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Study of patient satisfaction with chemotherapy nursing care
Study of patient satisfaction with chemotherapy nursing care John Sitzia, Neil Wood
This paper reports the results of a study of patient satisfaction with chemotherapy care atWorthing Hospital, UK. Patient satisfaction levels were generally high in the 173 patients who provided data, with 97% of patients happy with the service overall. Overall satisfaction was strongly associated with patient compliance. Satisfaction was expressed most consistently with chemotherapy nursing care, while lower satisfaction levels were associated with patient information in particular. Information on sideeffects was the foremost area of dissatisfaction with nursing care, and one in four patients expressed dissatisfaction with the information provided by the doctor at diagnosis.Treatment environment also emerged as an unsatisfactory area for a minority of patients.These results support previous findings that patients are strongly influenced by nurses' interpersonal manner, and that, above all, ambulatory chemotherapy patients want emotional and practical support. K e ~ o r d s : patient satisfaction, nurse-patient relations, nursing care, chemotherapy, day care, ambulatory chemotherapy
Studie (Jber die Zufriedenheit yon Krebspatienten mit der Pf/ege bei Chemotherapie Diese Arbeit berichtet (]ber die Ergebnisse einer Stuclie Liber die Zufriedenheit yon Patienten mit der Pflege bei Chemotherapie am Worthing-Krankenhaus, GB. Unter den 173 Patienten, die Angaben dazu machten, war die Patientenzufriedenheit generell hoch, wobei 97% der Patienten mit dem allgemeinen Service sehr zufrieden waren. Die allgemeine Zufridenheit stand in starkem Zusammenhang mit der Compliance der Patienten. Die gr66te Zufriedenheit wurde Libereinstimmend im Zusammenhang mit der Pflege bei Chemotherapie ge~ul]ert, wobei die Patienteninformation im besonderen weniger zufriedenstellte. Die Informationen Liber Nebenwirkungen waren dabei das am wenigsten zufriedenstellend erlebte Gebiet der pflegerischen Versorgung. AuBerdem driJckte einer yon vier Patienten Unzufriedenheit mit den Informationen aus, die ihm vom Ar-zt bei der Diagnosenmitteilunggegeben wurden. FOr eine Minderheit der Patienten stellte sich auch clas Umfeld der Behandlung als Ursache for Unzufrieclenheit dar. Diese Ergebnisse best~tigen frLihere Untersuchungen, nach denen Patienten stark von den zwischenmenschlichen Verhaltensweisen des Pflegepersonals beeinfluBt werden und dab ambulante Chemotherapiepatientenvor allem anderen emotionale uncl praktische UnterstiJtzung wiJnschen.
Estudio de/nivel de satisfacci6n en pacientes que reciben cuidados de enfermefia al recibir quimioterapia
John Sitzia BA, MPhil, Researcher,Worthin 8 Nursing Development Unit,Worthing Hospital, Lyndhurst Road, Worthing BNII 2DH, UK Neil W o o d bl/X PhD, Senior Lecturer, Health Sciences Research Centre, Chichester Institute, College Lane, Chichester PO 19 4PE, UK Correspondence and offprint requests to: John Sitzia
Este articulo muestra los resultados de un estudJo sobre el nivel de satJsfacci6n del pacJente que redJbe quimioterapia realizado en el Worthing Hospital, de Reino Unido Los niveles de satisfacci6n en los pacientes fueron generalmente altos, de los 173 pacientes que entraron en el estudio, 97% de los pacientes se mostraron contentos con los cuidado ofrecidos por el personal. En general, la satisfacci6n rue asociada fuertemente con la complacencia del propio paciente. Los niveles de satisfacci6n se mostraron mas elevados con los cuJdadosde enfermeria al poner quimioterapia, mientras que los niveles mas bajo fueron asociados con la informaci6n dada al paciente en particular. Informaci6n sobre los efectos secundarios fue el area de mayor insatJsfacci6n con los cuidados de enfermeria, I de cada 4 pacientes expresaron insatisfaccJ6ncon la informaci6n dada pot el m~dico en el diagn6stJco. El ambiente donde se da el tratamiento tambi6n aparece como un area de insatisfacci'pn para una minoria de pacientes. Estos resultados aportan fundamentos prevJos de que los pacientes son fuertemente influidos pot la forma interpersonal de set enfermeria, y sobretodo nos informan que, pacientes que reciben quimioterapia de forma ambulatoria Io que mas desean es tener soporte emocional y practico.
EuropeanJournal of Oncology Nursing 2 (3) 142 153© Harcourt Brace & Co. Ltd 1998
Study of patientsatisfactionwith chemotherapy nursing care 143
INTRODUCTION Assessment of health-service-user satisfaction fulfils a number of valuable functions. Satisfaction research can describe health services from the users' point of view, identify strengths and weaknesses in service provision and contribute to a strategy of health-care evaluation. Some commentators suggest all satisfaction research is evaluative. However, true evaluation is a measurement of performance against pre-defined objectives (Coulter 1991, Bond & Thomas 1992), and much satisfaction research is descriptive. Patient satisfaction is a neglected area in cancer care. It may be that cancer practitioners see satisfaction work as solely evaluative, and feel that satisfaction is unimportant relative to indicators such as treatment response, survival and quality of life. This attitude negates the clear association between patient satisfaction and compliance reported from a variety of health-care settings (Pekarik 1992, Coyne et al 1995, Harris et al 1995, Weingarten et al 1995). It is interesting to note that while the volume of literature describing developments in cancer treatment is vast and ever-expanding, virtually no work has examined compliance with these treatments beyond assessment of treatment toxicity. No published rates for patient refusal of cancer treatment could be found, but dissatisfaction with conventional care as distinct from anxiety or pessimism regarding conventional therapies - may be a factor in the growing interest in non-conventional cancer therapies (Downer et al 1994). Of most importance when considering satisfaction, it has been found that cancer patients' perceptions, rather than actual health status, influence compliance behaviour (Given 1991).
Components of chemotherapy care A search of major health literature databases CINAHL, British Nursing Index, EMBASE, MedLine and PsycLIT - identified no literature specifically addressing chemotherapy patient sarisfaction, and few concerned with satisfaction assessments in more general samples of people with cancer. Therefore, studies exploring issues relevant to satisfaction were reviewed, including psychosocial issues in cancer care, patient acceptance of health care, cancer care facilities, management of side-effects and health professional-patient relations. Four aspects, or 'components', of chemotherapy care relevant to patient satisfaction were identified. 'Interpersonal' care includes communication, staff attitude and empathic behaviour, and is of great significance to the patient's psychological wellbeing. Interpersonal care is recognized as the most important satisfaction component in many healthcare settings (Abramowitz et al 1987, Rubin 1990), and has been found to correlate most strongly with
satisfaction with cancer nursing care (Burton & Parker 1994, Galbraith 1995). Tishelman (1994) found that almost all nursing incidents described by patients as 'exceptionally good' involved kindness, friendliness and emotional support, and Krishnasamy (1996) found emotionally supportive behaviours to be the most frequently identified 'helpful nurse interactions' reported by patients with cancer. Unfortunately, dissatisfaction with interpersonal care appears common among cancer patients. Communication in oncology nursing has been characterized by avoidance, poor appreciation of patients' needs and a small amount of information-giving (Fernsler 1986, MacLeod Clark & Sims 1988). Recent studies have found that both doctors and nurses typically withhold information, fail to provide explanations and block patients from disclosing their problems, using verbal behaviours such as conversational tactics (Dodd et al 1992, Wilkinson 1992, Lerman et al 1993). A 1994 literature review on the psychological support role of the cancer nurse concluded that a low level of attention is generally given to the social and psychological aspects of illness (Hanson 1994). This is particularly worrying in the chemotherapy context, as the experience is associated with a range of psychosocial problems such as anxiety and depression (Peterson & Popkin 1980, Gobel & Donovan 1987, Lobert & Correia 1992, Wujcik 1992, Bottomley 1996). A second component of satisfaction concerns the technical aspects of care. In chemotherapy care, these include drug administration, and assessment and management of side-effects (JCCO 1994, Tanghe et al 1994). Effective management of side-effects is critical to both the patient's quality of life and to compliance (Hoagland et al 1983, Buccheri et al 1989, Morrow et al 1991, Tierney et al 1992, Winningham et al 1994). It is again important to stress that compliance is determined not by the simple occurrence of side-effects but by the patient's ability to cope, which in turn is largely influenced by the support provided by health professionals (Richardson et al 1988, Ellis 1991, Given 1991). The third element of care relevant to satisfaction is patient education and information. This is important throughout diagnosis, treatment and follow-up. Satisfactory patient education has been associated with enhanced recovery after surgery or out-patient procedures, improved adherence to a chemotherapeutic regime, reduced anxiety and enhanced ability to cope with symptoms (Dodd & Mood 1981, Richardson et al 1988, Ellis 1991, Fernsler & Cannon 1991, Richardson & O'Sullivan 1991). Dissatisfaction with this component appears widespread. A review of cancer nursing studies concluded that around one third of patients with cancer express dissatisfaction with the information they receive regarding their treatment and nursing care (Wilkinson 1992). The sucEuropeanJournol o£ OncologyNursinE 2(3), i42-I 53
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cess of cancer charities in providing essential information via telephone also reflects an inadequacy in the information provided by treatment centres (Venn et al 1996). Dissatisfaction is generally associated with 'routine' information-giving; experimental educational interventions tend to be associated with far greater patient benefits. For example, Burish and Tope (1992) found an enhanced education package reduced conditioned side-effects and negative feelings, and improved general coping ability. Two further components of satisfaction are concerned with service logistics. Clinic access and treatment environment are important not only in practical terms but also in relation to patients' anxiety and anxiety-related symptoms, such as anticipatory nausea and vomiting. The association between treatment environment and patient anxiety is complex and not fully understood. It has been explained most commonly through classical conditioning theory, which associates anticipatory symptoms such as anxiety and nausea with stimuli in the chemotherapy environment, such as sounds, smells and the sight of the chemotherapy equipment (Redd & Andrykowski 1982, Meyerowitz et al 1983, Nerenz et al 1986, Andrykowski et al 1988, Morrow & Dobkin 1988, Pickett 1991). Maintaining a clean, comfortable, odour-free treatment environment may help (Scogna & Smalley 1979). This area has hardly been investigated in satisfaction terms. Poor accessibility may also cause anxiety. Greenwood (1993) pointed out that poor parking facilities can lead to lateness and increased anxiety in day-case patients. Concurring findings come fi'om a study in which patients ranked 'trouble finding somewhere to park' 12th in a list of 73 problems associated with chemotherapy (Coates et al 1983), So, the literature review confirmed that: (1) patient satisfaction is important in this context, (2) chemotherapy patient satisfaction is almost completely unexplored, and (3) several areas relevant to satisfaction can be identified. This study was concerned with further investigation of these satisfaction issues using a sample of chemotherapy patients attending the Day Ward at Worthing Hospital. A previous phase of data analysis from this project was concerned with providing a clearer taxonomy of components of satisfaction in this context (Sitzia & Wood 1998b). This analysis confirmed the five components identified via literature review, but, in addition, multidisciplinary teamwork was identified as an important issue. The primary aims of this study were to identify areas of notable satisfaction or dissatisfaction, to determine the influence of patient characteristics on satisfaction levels and to determine which components correlate most strongly with overall satisfaction. Europeon journal of" Ontology Nursing2(3), 14~[53
PATIENTS A N D M E T H O D S Study setting The study setting was Edburton Day Ward at Worthing Hospital, UK. This is a medical day unit providing a range of treatments. Approximately 75% of patient activity is haematology or oncologyrelated. Intravenous chemotherapy administration forms 20% of the workload, with an average of 140 patient episodes per month. Chemotherapy is administered by a team of 10 nurses, who always work in pairs when giving chemotherapy. The most common diseases treated are cancers of the breast and bowel, and lymphomas.
Patients From July 1994 to January 1996, 248 patients received ambulatory intravenous chemotherapy on the Day Ward. Patients aged under 18 (n = 7) and patients who commenced treatment elsewhere (n = 6) were excluded. The remaining 235 patients formed the target population. Nursing staff considered 24 patients to be too distressed and/or ill - due to disease or side-effects - to complete a questionnaire. A further 11 patients were ineligible as they had been involved in the pilot testing of the questionnaire. Therefore, 200 patients were eligible for data collection.
Data collection The study instrument was the Worthing Chemotherapy Satisfaction Questionnaire (WCSQ). This is a self-report questionnaire with 47 items. Twenty seven are satisfaction questions, using either a 100 mm VisualAnalogue Scale (VAS) or a 5-point adjectival scale. The instrument also contains four prompts for comments. The instrument displays reasonable reliability and validity (Sitzia & Wood 1998b). Questionnaires were distributed in two ways: (1) face-to-face, handed to the patient by nursing staff, with a stamped self-addressed envelope (SSAE) to return the questionnaire; (2) by mail to the patient's home, with a SSAE and a covering letter. If no response was obtained within approximately a month, a second questionnaire was sent.
Data analysis Quantitative data were analysed using SPSS. Nominal or ordinal data were analysed using chi square, Mann Whitney U or Kruskal-Wallis H tests. Interval level data, unless severely skewed, were analysed using Student's t-test or one-way analysis of variance (ANOVA). Qualitative data were analysed using a constant comparative method of content analysis (Field & Morse 1985). QSR NUDeIST software was used for qualitative data
Study of patient satisfaction with chemotherapy nursing care coding and categorization. Each sentence of text was defined as a 'text unit'.
Assessment of'overall' satisfaction 'Overall' satisfaction for each respondent was assessed in two ways: (1) by a single 'global' item and (2) by a composite score (Henley & Davis 1967). The score was derived by calculating the mean average of the results of individual satisfaction items for each of six components, with each item scored from 1 (low satisfaction) to 5 (high satisfaction). The sum of these averages formed the composite score. Therefore, the minimum possible score was 6 and the maximum 30. Associations between individual items and these two indicators were evaluated using the Spearman rank correlation coefficient.
RESULTS
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in a number of respects. First, participants were younger than non-participants (mean difference = 3.9 years, 95% confidence interval -- 7.7 to 0.2 years). ANOVA identified only the 'too ill' subgroup as having a significantly higher age than the respondent group (mean -- 62.8 years). Second, 68% of the participant group were solid tumour patients whereas 52% of the non-participant group were solid tumour patients. The 'too ill' and the 'missed' sub-groups had the smallest proportions of solid tumour patients, 42% and 40% respectively. Third, 29% of non-participants, as opposed to 56% of participants, were involved in a concurrent study at the site assessing side-effects. None of the 'missed' sub-group were involved, only 21% of the 'too ill' group were involved and only 29% of nonresponders were involved. Finally, 88% of participants survived at least 6 months post-chemotherapy whereas only 53% of non-participants survived 6 months. The greatest difference was between participants and the 'too ill' sub-group, of whom only 12% survived to 6 months.
Sample characteristics Due to administrative error, 10 of the 200 eligible patients were not asked to complete a questionnaire. A further 17 patients failed to return a completed questionnaire. The response rate was 86% including 'missed' patients, 91% excluding 'missed' patients. Participants formed 74% of the study population. Table 1 presents participant and non-participant characteristics. 'Regime frequency' indicates the number of visits per month to the ward for chemotherapy treatment. 'Regime toxicity' data refer to a regime toxicity rating from 1 (low toxicity) to 3 (high toxicity). 'Non-compliance' was defined narrowly as premature cessation of chemotherapy at a patient's request due to severity of experienced side-effects. The two groups differed
Characteristic n Age in years Gender Regime frequency Regime toxicity
Diagnosis Non compliant Involved in other clinical studies Survived 6 months post-chemotherapy
mean [standard deviation] range female male median days per month high medium low solid tumour haematological
Accessibility 96% of the sample felt that chemotherapy appointment times suited their needs 'very well' or 'fairly well'. 83% of respondents stated that Worthing Hospital was accessible; however, only 54% had 'no problem' getting to the hospital. 93% of those who reported an access problem had arrived by private car rather than other means (Z2 = 14.95, P < 0.001). Parking at the hospital was cited as a problem by 52% of those arriving by car.
Ward environment 43% of patients commenced treatment within 15 minutes of arrival on the ward, and a further 44%
Participants
Non-participants
n(%)
n(%)
173 56.2 [ 13. I] 21-84 120 (69%) 53 (3 I%) 2 65 (38%) 72 (42%) 36 (21%) I 17 (68%) 56 (32%) 5 (3%) 97 (56%)
62 60.1 [12.1] 34~85 39 (63%) 23 (37%) 2 23 (37%)
153 (88%)
33 (53%)
Test result t = 2.0, P < 0.05 Z 2 = 0.6, n.s. U = 5037, n.s. Z 2 = 5. I, n.s.
18 (29%) 21 (34%) 32 (52%) 30 (48%) 2 (3%) 18 (29%)
Z 2 = 4.4, P < 0.05 Z ~ = 0.0, n.s. Z 2 = 13.7, P < 0.01 Z 2 = 34.3, P < 0.01
n.s.: not significant. EuropeQnjournol of OntologyNursing2(3), 142-153
146 EurapeanJournal of OntologyNursing waited between 15 and 30 minutes. 21% of patients were less than satisfied with their waiting time. Dissatisfaction was strongly associated with longer waiting times (%2 = 45.9, P < 0.0001). 92% of the sample were happy with the level of privacy while receiving chemotherapy on the ward. 66% of respondents expressed a preference for receiving chemotherapy 'in public' on the open ward, 7% expressed a preference for a curtained cubicle and 27% expressed no preference. 26% of patients felt 'very' or 'fairly' anxious while receiving chemotherapy. Dissatisfaction with privacy was strongly associated with anxiety (H = 13.5, P < 0.01). 25% of text units concerned ward environment, one in five of which expressed dissatisfaction. These comments were mostly concerned with the ward not being purpose-built, not being cancer-dedicated and being busy. This was linked to heightened anxiety by some patients, for example: The Day Ward is often very busy leading to a longer wait than anticipated for treatment. This seems to be due to lack of staff. Seeing the staff have to rush increases the anxiousness of people to be treated. I would appreciate a separate waiting room that we were able to sit in when awaiting treatment.
aspects of the lack of privacy and high levels of activity, such as the following: The proximity of patients with problems is supportive to me,
similar
I imagine more privacy could be involved in a less pleasant environment.
Interpersonal aspects of care Six 'interpersonal nursing care' items were assessed by VAS (Table 2). The item assessing satisfaction with 'reassurance and support' recorded the highest mean score, the item 'concern for your privacy when talking about your personal details' the lowest. The mean average score for the six items was 66.9 (SD = 28.0). Two further items used a 5-point scale to ask whether nurses and consultants could be 'more approachable'. Whereas only 3 patients (2%) felt that their nurses could be more approachable, 32 (19%) agreed that their consultants could be more approachable. 37% of text units referred to the interpersonal aspects of nursing care, less than 3% of which expressed dissatisfaction. Dissatisfaction was expressed over privacy and lack of time, as exemplified in these comments: When taking personal details on first visit, I feel this should be done more privately.
This anxiety seems, in part, a concern for safety when receiving chemotherapy:
The nurses are unsatisfactory only when it comes to privacy.
Chemotherapy was being given in the corridor of the Day Ward. The porter just walked past with his large trolley while I was sitting there having chemo. I never felt so exposed and very anxious.
The fact that 97% of relevant comments were favourable supported the high levels of satisfaction in the quantitative data. Comments covered two areas: nurses' empathy and nurses' attitude. 'Empathy' comments used words such as 'supportive', 'sensitive' and 'understanding', for example:
The Day Ward is obviously not purpose-built. I think patients would be happier in a specially constructed ward. However, 80% of comments regarding ward environment were favourable. Many noted positive
I have been given the best treatment possible. The nursing staff are caring, kind, dedicated people. To them the patient comes first in all respects.
N u r s i n g care i t e m
mean
SD
Interpersonal care items: Reassurance and support Having time to tall< to you Appreciation of your individual needs Concern for your relatives/friends Concern for privacy when giving treatment Concern for privacy when discussingpersonal details.
76.2 75.9 71,5 65.0 58.8 57.0
27.5 26.7 29,5 33.5 33,4 34,3
Technical care items: Technical skill in giving chemotherapy Help given in controlling or reducing side-effects Awareness of side effects Medical knowledge of your problem.
78.3 71.1 70.6 68.1
26.3 30.3 31.1 31.1
Europeanjournal of Ontology Nutsing 2(3), 142-153
Study of patient satisfaction with chemotherapy nursing care In my opinion the Day Ward nurses give the best attention and reassurance possible. I cannot say how much they have helped during my treatment. 'Attitude' comments used words such as 'cheerful', 'friendly' and 'nice': Everyone is so friendly and cheerful they put me at ease. All the staff are very friendly and do the utmost in making me feel relaxed. Twenty units (4% of all text units) were specifically concerned with physician care. Seventeen of these were unfavourable. A lack of empathy from the physician at critical times was one theme: Initially more information and reassurance needed. In my case I saw a doctor I had never seen before who said 'Yes, you have cancerous cells. We will arrange an appointment for you.' I was in and out in three minutes. I had no support from the surgeon and his SHO and found him and his team very dismissive and unsympathetic. Poor communication skills and inadequate appreciation of the importance of information for patients were another theme: One must be given all opportunities to be told as soon as possible and not left to guess what problems they have. Very hard on your side of the fence. The consultant I was under at that time, I felt I was dragging information from him. Finally, lack of time to talk in consultations was commented upon: I feel that at the initial appointment where the diagnosis is first discussed and information is given, more time should be allowed for the patient as this can be a traumatic, distressing appointment. The consultants continually have a full waiting room.
Technical aspects of care Four VAS items assessed technical aspects of nursing care. As with the 'interpersonal' items, responses to these items were skewed towards high values (Table 2). Nurses' 'technical skill in giving chemotherapy' achieved the highest scores, 'medical knowledge of your problem' the lowest. Thirty-nine text units (7% of all units) addressed technical aspects of nursing care, 30 of which expressed satisfaction. Most comments were nonspecific, referring to the nurses as 'efficient' or 'professional' or describing the treatment as 'excellent', 'first class' and so on. Comments referring to details in chemotherapy administration procedures are particularly noteworthy:
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The treatment I received, and the method and care it was administered with, was excellent. The staff are putting patients at ease all the time, at the same time double checking the medication. An excellent system. The treatment I have had was similar to that received 2 years ago at R - - , except that at Worthing a nurse sat with me all the time which was a bonus. Nine comments expressed 'dissatisfaction'. One was concerned with cannulation skills, the others with side-effects: Could do with a lot more help controlling and reducing side-effects of chemo. More information in controlling or reducing side-effects and details of medication that can help control side-effects in the early stages.
Patient information On diagnosis, disease-related information was provided in almost all cases by consultants: 94% of patients received verbal information, 3% of whom also received written information. 6% of respondents (n = 10) stated that the consultant had provided no information about their disease. 76% of the sample were 'fairly happy' or 'very happy' with the level of information received. 15% of the sample (n = 24) were either 'fairly unhappy' or 'very unhappy'. There was a strong association between satisfaction with information on diagnosis and 'approachability' of the consultant (Z~ = 13.5, P < 0.001). Chemotherapy-related information was provided by both consultants and nurses. 82% of patients received either verbal or written information from the consultant, and 60% received either verbal or written information from Day Ward nurses. Three patients stated that they received no information from any hospital source. Two questions assessed satisfaction with chemotherapy-related information. In response to the first, 85% of patients were either 'fairly happy' or 'very happy' with the information received. Seven patients (5%) were either 'fairly unhappy' or 'very unhappy'. The second question was a VAS item which assessed satisfaction with the 'explanation of procedures and treatment' provided by Day Ward nurses. The mean score was 63.4 (SD = 32.3). Two 5-point ordinal items assessed satisfaction with information on side-effects. 85% of patients (n = 145) were 'very happy' or 'fairly happy' with 'practical advice about side-effects when they occur'. Three patients (2%) were 'very unhappy', a further seven (4%) 'fairly unhappy'. Fewer patients, 79%, were happy with the advice given regarding self-care between chemotherapy cycles. 26% of the 563 text units commented upon patient information. Unlike all the other themes in the qualitative data, only a minority of relevant units Europeanjournal of OncologyNursing 2(3), 142 153
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(44%) expressed satisfaction. Satisfied comments covered both diagnosis-related and treatmentrelated information: The effects and treatment were given to me verbally plus an audio tape of the interview. I don't see how it can be improved. Very satisfied with information given and the opportunity to talk quite openly. Dissatisfied comments covered four aspects of care: prognosis/progress, regime/drags, side-effects and information-giving procedures. The overriding complaint was the lack of clear, detailed information at every stage of treatment, as these examples illustrate: I wish the information given about my problem was explained in more detail and what chances of the cancer recurring is. Overall I am happy with the service provided although I am still totally ignorant of everything that has happened. I would have liked to have had the choice of having had everything explained to me in detail. I could have asked more but everyone is so busy and it isn't always easy to know exactly what to ask. Patients should be told exactly what chemo/radiation entails and not just 'This is the treatment you will have' but what one expects to have to face. I personally learnt more from a good friend than I did from hospital. I would have liked more written information on the chemotherapy that I was having - type of drugs, length of treatment. I would prefer more in depth information on the side-effects of the drugs I am being given.
Multidisciplinary t e a m w o r k 20% of respondents (n = 33) felt the multidisciplinary framework for care at Worthing Hospital could be improved, with a further 29 patients expressing no opinion. This component was the subject of 4% of all comments, three-quarters of which were not favourable. Poor inter-departmental communication and poor integration of services were highlighted:
83% of respondents stated they were 'very happy' overall, with a further 14% 'fairly happy'. A histogram showing the distribution of composite score values is presented as Figure 1. The mean score was 24.1 (SD = 3.8). Spearman correlations were used to determine which of the six components correlated most highly with the composite score (Table 3). The strongest correlation was with technical aspects of care (P = 0.66), the weakest with clinic accessibility (9 = 0.37). However, the mean correlation for interpersonal aspects of nursing care was 9 = 0.68. The 'global' item and the composite score had a (Spearman) correlation of P = 0.47.
Determinants of satisfaction No associations were found between satisfaction in any component and the following patient characteristics: age, diagnosis, regime toxicity, number of previous visits to the ward or 6-month survival postchemotherapy. Men's scores were lower than women's for all interpersonal nursing care items except for the items regarding privacy. This difference was significant for nurses' 'reassurance and support' (mean difference = 11.2, t -- 2.3, P < 0.05). Three characteristics showed more consistent associations. Firstly, higher levels of chemotherapyrelated anxiety were associated with dissatisfaction with two aspects of ward environment: level of privacy on the ward (Z2 = 13.2, P < 0.001) and being treated among other patients (Z2 = 5.7, P < 0.05). More anxious patients (n = 78) were also significantly less satisfied than more relaxed patients (n = 94) with chemotherapy nurses' concern for privacy when discussing personal details (mean difference = 18.6, t = 3.5, P < 0.01) and concern for privacy when giving chemotherapy (mean difference -- 13.4, t = 2.6, P < 0.01). Secondly, patients who were also participants in the concurrent study of chemotherapy side-effects (n = 97) were more satisfied than non-participants (n = 76) with almost every aspect of chemotherapy
30,
I appreciate that my surgeon and oncologist communicated with each other but was confused when one thought I had 'a mass' in my abdomen whilst the other thought it was probably 'lots of little bits'. Blood test, consultation, and treatment should be on the same day. The various departments do not seem to dovetail together sufficiently.
g
lO,
m
~E z
0 6.0
'Overall' satisfaction The 'global' item which assessed satisfaction on a 5-point adjectival scale produced very high scores. EuropeanJournal of Ontology Nursing 2(3),
142-- 153
m
20,
n n
Composite
12.0
ITU I 18.0
24.0
satisfaction score
Figure I Histogram of composite satisfactionscore (minimumpossible= O, maximumpossible= 30).
30.0
Study of patient satisfaction with chemotherapy nursing care
Component
Number of items
Correlation with composite score Range
Mean
Accessibility Ward environment Interpersonal care
3 3 9
Technical care
4
Patient information Multidisciplinaryteamwork
5 I
0.30 0.41 0.42-0.45 0.42 0.71 0.61 0.70 0.49 0.73 -
0.37 0.44 0.60 0.66 0.59 0.63
nursing care. This difference reached statistical significance in three items: nurses' technical skill in giving chemotherapy (mean difference = 12.4, t = 2.9, P < 0.01), reassurance and support (mean difference = 9.6, t = 2.2, P < 0.05) and nurses 'having time to talk to you' (mean difference = 9.3, t = 2.1, P < 0.05). Finally, patients who were non-compliant (n = 5) were less satisfied with all aspects of nursing care than patients who were compliant (n = 172). Significant differences were recorded in: nurses' technical skill in giving chemotherapy (mean difference = 24.9, t -- 2.1, P < 0.05), nurses' medical knowledge of your problem (mean difference = 50.4, t = 3.7, P < 0.01), reassurance and support (mean difference = 25.0, t = 2.0, P < 0.05), nurses' awareness of side-effects (mean difference = 53.7, t -- 4.0, P < 0.01) and help given in controlling sideeffects (mean difference = 49.3, t = 3.7, P < 0.01). Non-compliant patients were also less satisfied with every area of patient information. The difference in satisfaction with 'practical advice on what to do about side-effects' was statistically significant (U = 142, P < 0.01). A significant difference in overall satisfaction (composite score) was found in two characteristics. A weak difference was found with anxiety: more anxious patients recorded a significantly lower composite score than did less anxious patients (mean difference = 1.3, t = 2.2, P < 0.05). A stronger difference was found with compliance, with non-compliant patients far less satisfied overall than compliant patients (mean difference = 6.0, t -- 3.5, P < 0.01).
DISCUSSION
An instrument with acceptable validity and reliabilIty was used in this study (Sitzia & Wood 1998b). The response rate is high for a satisfaction study (Sitzia & Wood 1998a). The study population was restricted to adult patients with common cancers receiving intravenous out-patient treatment with common regimes. These patients form the bulk of the chemotherapy workload in cancer units in the
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UK. These results are not generalizable to patients with less common diseases who typically receive treatment in a cancer centre. The fact that only 12% of very ill or distressed patients survived 6 months post-chemotherapy endorses the decision of nursing staff to exclude these patients from the study. Very ill patients are commonly omitted from satisfaction surveys. Some commentators believe this group is inherently likely to be less satisfied and so their exclusion skews satisfaction data (Rubin 1990). This is a complex issue but it is worth noting that in this study there were no significant differences in the satisfaction levels of those respondents who survived 6 months (n = 153) and those who did not (n = 20). The results of this study clearly suggest that satisfaction levels are generally high among this group of ambulatory chemotherapy patients in that most patients are satisfied with most aspects of care. This general satisfaction is perhaps to be expected in cancer care: cancer patients need to believe that their care providers are highly skilled and fully dedicated because their lives literally depend on their healthcare team (Blanchard et al 1990). Satisfaction was expressed most consistently with chemotherapy nursing care, while patient informarion in particular was associated with lower sarisfaction levels. Patient information generally appears a significant weak point in chemotherapy care, particularly with regard to side-effects. One problem in providing side-effects information is the scarcity of published regime-specific data, such as patterns in prevalence and severity. Another often-cited problem is that cytotoxic agents are unpredictable, and so, sensibly, information is as vague as possible. A more general problem is that different patients want different levels of information and participation in medical decision-making. There is evidence to support the model of blunters and monitors in the chemotherapy context (Gard et al 1988, Lerman et al 1990, Steptoe et al 1991). These problems are not easily resolved and deserve substantial investigation. It is clear that satisfaction with information also depends on good communication from, and between, health professionals. In this study, sideeffects related information was foremost among Europeanjournal of OncologyNursing 2(3), 142-~53
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areas of dissatisfaction with nursing care. 15% of patients were less than happy with the practical advice for treatment of side-effects, and 21% with advice for self-care during chemotherapy. 56% of comments regarding information (including sideeffects information) expressed dissatisfaction. Comments indicate two perceived misjudgements on the part of nursing staff: they underestimated the severity of the side-effects and overestimated patients' ability to cope. These characteristics were also reported by Fernsler (1986). The quantitative data indicated that dissatisfaction was most evident in the non-compliant patients, and patients' comments suggest that satisfaction is also related to the patient's perception of the effort being made by the nursing staff to help with side-effects, rather than any objective success in controlling symptoms. In line with the findings of Richardson and colleagues (1988) and Ellis (1991), these results lead to the conclusion that satisfaction is determined not by objective success in side-effects management but by the patient's perception that health-care staff have invested time and effort in that management. Dissatisfaction was more widespread with information from doctors than from nursing staff. A quarter of patients were dissatisfied with information at diagnosis, and one in five felt their consultant could be more approachable. Patients' comments clearly showed that dissatisfaction, when present, was profound. Traditionally, few health-care professionals receive training in communication skills. Thompson reported that many physicians acquire a consultation style early in their career and use the same style lbr every patient, regardless of individual needs or preferences (Thompson 1984). Fallowfield (1996) identified four reasons for oncologists' failure to communicate effectively: a lack of awareness of communication problems; fear of unleashing difficult emotions; fear of being blamed; and poor training in communication skills. In recent years, communication training has become recognized as a primary component of medical education in the UK, and therefore it may be hoped that future physicians will, as a matter of course, 'bring to their work the skills and attitudes of caring ... above all, sensitive and open inter-personal communication' (Myerscough 1992). Poor communication was identified as the sole problem with the multidisciplinary team, with a small number of patients receiving contradictory pieces of information. This fragmentation is not uncommon and is largely due to NHS hospital services traditionally being organized around clinicians (Allsop 1996). However, this system is changing, as reflected by the emphasis on a patientcentred approach and structured multidisciplinary links in the Calman-Hine report for the reorganization of cancer services in the UK (Doll 1995). It is also worth noting that the US model of 'managed care', designed to ensure coordination of care across disciplines, is attracting interest in acute settings in the UK (Benton 1995). EuropeanJournal of OncologyNursing2(3), 142--153
Among the most interesting results from this study are those for determinants of satisfaction. One surprising result was that satisfaction appeared unaffected by respondent age, which is regarded as the most consistent determinant of satisfaction. The current results suggest that age is not associated with satisfaction in the ambulatory chemotherapy context. It was also surprising that men were less satisfied than women with interpersonal aspects of nursing care, as gender does not appear influential in other contexts. One hypothesis is that the chemotherapy nursing staff, who were all female, simply empathized more readily with female patients. A second explanation - and the two are not mutually exclusive - is that nursing staff did not perceive male patients as needing the same amount of interpersonal care as female patients. Of course, it may be that there is no actual difference in care but that, for some reason, men are less satisfied. This is a complex area, as illustrated by the work of Reid-Ponte (1992). Reid-Ponte found that the more skilled the nurse was in 'perceiving, feeling and listening', the more distress the patient experienced. Reid-Ponte's explanation was that although the empathic nurse elicits" more distress, this does not necessarily mean the nurse is alleviating the distress. It may be that the chemotherapy nurse's role is not to alleviate suffering but to recognize symptoms of psychological distress and to refer the patient for specialized support. In short, caring behaviour may engender patient satisfaction but may not be the most effective intervention for the patient's problem. A significant proportion of patients, 42%, did not feel relaxed while receiving chemotherapy. There was a clear association between pre-treatment anxiety and dissatisfaction with privacy. As anxiety in the chemotherapy context is firmly associated with symptom distress, it is fair to hypothesize that anxious patients regarded lack of privacy as a contributory factor to distress. Patients' comments seem to establish that high activity on the ward, the 'hustle and bustle', was associated with anxiety. However, in addition to physical surroundings, the role of nurses' interpersonal skills in constructing a 'good environment' was clearly identified. The results for treatment environment should be carefully considered by chemotherapy nurses. In particular, although only 7% of this sample preferred to be treated in private, with respondents clearly stating the support gained from mixing with other patients, a choice between 'private' and 'public' administration is clearly desirable. These results suggest that it is important that chemotherapy staff be aware of each patient's anxiety state and take measures to reduce this anxiety wherever possible. Given the evidence linking environmental stimuli with anxiety and psychosomatic symptoms, it is puzzling that no experimental or indeed theoretical work on chemotherapy treatment environment appears to have been carried out. Such work is important and long overdue.
Study of patient satisfaction with chemotherapy nursing care The difference in satisfaction with nursing care between participants and non-participants in the concurrent side-effects study is intriguing. T h e sole observable difference in care for the two groups was that the participants were asked to complete a sideeffects questionnaire after e a c h cycle of chemotherapy. It m u s t be a s s u m e d that this 'additional' attention e n h a n c e d patients' positive perceptions of both interpersonal and technical aspects of care, but it seems i n c o n g r u o u s that n o differences appear in the results directly related to side-effects, m o s t notably nurses' 'awareness of side-effects or other problems you m a y b e e x p e r i e n c i n g ' . These results m a y in fact b e a manifestation of the H a w t h o r n e Effect: the additional attention implicit in the data collection process and the apparent concern of the nurses about the patient's side-effects have led to a positive perception, not of the nurses' awareness of side-effects but o f the nurses' concern for the patient (LeVois et al 1981). Several models to i n f o r m patient satisfaction results have b e e n proposed (Sitzia & Wood 1997). These results seem appropriate to two. First, the results support the affective m o d e l o f satisfaction (Korsch et al 1968). This m o d e l proposes that health care is primarily an emotional experience for patients, particularly those with serious illness, and so satisfaction is assessed primarily on the health professional's interpersonal b e h a v i o u r such as emotional support, level o f interest in b o t h medical and personal p r o b l e m s and time spent w i t h the patients. This model of affective b e h a v i o u r concluded that ' d e v o t i o n ' is the m o s t i m p o r t a n t aspect of care for m a n y patients, contributing more than any other to patient satisfaction. Second, the results of this study support the 'discrepancy' m o d e l (Williams 1994). This model argues that 'the expression of dis/satisfaction is g o v e r n e d primarily b y (negative) expectations as to w h a t will/should not h a p p e n ... It is likely that expressions of satisfaction will occur assuming n o negative expectations h a v e been transgressed. As a result we w o u l d expect a wide r a n g e of b e h a v i o u r to be permissible with only socially extreme behaviour causing dissatisfaction' (Williams 1994). In conclusion, this study revealed high levels of satisfaction. Patients do appear to discriminate between various aspects of care, supporting the m u l t i d i m e n s i o n a l m o d e l of patient satisfaction in this context. The m o s t notable area of dissatisfaction was patient information and education. Levels of satisfaction with c h e m o t h e r a p y nursing care were high. S o c i o d e m o g r a p h i c characteristics appear not to determine satisfaction in this context; however, patient compliance and anxiety do influence satisfaction in some areas. This study strongly supports previous work w h i c h indicates that, above all, patients with cancer are influenced b y nurses' interpersonal m a n n e r (Kadner 1994, T i s h e l m a n 1994, Halldrrsd6ttir & H a m r i n 1997, T h o m a s et al 1997). A m b u l a t o r y c h e m o t h e r a p y patients w a n t emotional
I 51
and practical support; they want their concerns to b e listened to and their questions to b e answered. It remains the responsibility of the c h e m o t h e r a p y nurse to ensure these needs are met.
ACKNOWLEDGEMENTS
The authors would like to thank the patients who took part in the study and the nursing staff of Edburton Day Ward Nursing Development Unit at Worthing Hospital for assistance with collection of data. This study was undertaken by one of us (JS) as part fulfilment of the requirements for the degree of MPhil at the University of Southampton.
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Abralnowitz S, et al (1987) Analyzing patient satisfaction:a multianalytic approach. Quality Review Bulletin 13:122-130 Allsop J (1996) Health Policy and the NHS. Longman, London Andrykowski M A, et al (1988) Prevalence, predictors, and course of anticipatory nausea in women receiving adjuvant chemotherapy for breast cancer. Cancer 62: 2607-2613 Benton D (1995) The role of managed care in overcoming fragmentation. Nursing Times 91 : 25-27 Blanchard C G, et al (1990) Physician behaviors, patient perceptions, and patient characteristics as predictors of satisfaction of hospitalized adult cancer patients. Cancer 65:186-192 Bond S, Thomas L H (1992) Measuring patients' satisfaction with nursing care. Journal of Advanced Nursing 17:52-63 Bottomley A (1996) Group cognitive behavioural therapy interventions with cancer patients: a review of the literature. European Journal of Cancer Care 5:143-146 Buccheri G F, et al (1989) Continuation of chemotherapy versus supportive care alone in patients with inoperable non-small cell lung cancer and stable disease after two or three cycles of MACC. Cancer 63:428-432 Burish T G, Tope D M (1992) Psychological techniques for controlling the adverse side-effects of cancer chemotherapy: findings from a decade of research. Journal of Pain and Symptom Management 7:287-301 Burton M V, Parker R W (1994) Satisfaction of breast cancer patients with their medical and psychological care. Journal of Psychosocial Oncology 12:41-63 Coates A, et al (1983) On the receiving end patient perception of the side-effects of cancer chemotherapy. European Journal of Cancer and Clinical Oncology 19: 203-208 Coulter A (1991 ) Evaluating the outcomes of health care. In: Gabe J et al (eds) The Sociology of the Health Service. Routledge, London Coyne T, et al (1995) Dietary satisfaction correlated with adherence in the modification of diet in renal disease study. Journal of the American Dietetic Association 95: 1301 1306 Department of Health (1995) A Policy Framework for Commissioning Cancer Services. HMSO, London Dodd M J, Mood D W (1981) Chemotherapy: helping patients know the drugs they are receiving and their possible side effects. Cancer Nursing 4:311 318
Editor's Note
A paper describing the development and testing of the Worthing Chemotherapy Satisfaction Questionnaire will be published in Volume 3 of European Journal of Oncology Nursing. Europeanjournol of Ontology Nursillg 2(3), t4~153
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Dodd M J, et al (1992) Outpatient chemotherapy: patients' and family members' concerns and coping strategies. Public Health Nursing 9 : 3 7 4 4 Downer S M, et al (1994) Pursuit and practice of complementary therapies by cancer patients receiving conventional treatment. British Medical Journal 309: 86-89 Ellis J (1991) How adolescents cope with cancer and its treatment. American Journal of Maternal Child Nursing 16:157-160 Fallowfield L (1996) It's good to talk: improving the communication skills of doctors. Oral presentation, BACUP Conference, Brighton Fernsler J (1986) A comparison of patient and nurse perceptions of patients' self-care deficits associated with cancer chemotherapy. Cancer Nursing 9:50-57 Fernsler J I, Cannon C A (1991 ) The whys of patient education. Seminars in Oncology Nursing 7 : 7 9 - 8 6 Field P A, Morse J M (1985 ) Nursing research: the application of qualitative approaches. Chapman and Hall, London Galbraith M E (1995) What kind of social support do cancer patients get from nurses? Cancer Nursing l 8:362-367 Gard D, et al (1988) Sensitizing effects of pre treatment measures on cancer chemotherapy nausea and vomiting. Journal of Consulting and Clinical Psychology 56: 80-84 Given B (1991) Compliance and health promotion behaviors. In: Baird S B e t al (eds) Cancer Nursing: A Comprehensive Textbook. WB Sannders, Philadelphia Gobel B H, Donovan M I (1987) Symptom distress: depression and anxiety. Seminars in Oncology Nursing 3:267-276 Greenwood M (1993) Patients' views of oral day surgery. British Dental Journal 175:130-132 Halld6rsd6ttir S, Hamrin E (1997) Caring and uncaring encounters within nursing and health care from the cancer patient's perspective. Cancer Nursing 20: 120-128 Hanson E (1994)An exploration of the taken-for-granted world of the cancer nurse in relation to stress and the person with cancer. Journal of Advanced Nursing 19: 12-20 Harris L E, et al (1995) Correlates of health care satisfaction in inner-city patients with hypertension and chronic renal insufficiency. Social Science and Medicine 41 : 1639-1645 Henley B, Davis M S (1967) Satisfaction and dissatisfaction: a study of the chronically ill aged patient. Journal of Health and Social Behavior 8:65-75 Hoagland A C, et al (1983) Oncologists' views of cancer patient noncompliance. American Journal of Clinical Oncology 6:239-244 JCCO (Joint Council for Clinical Oncology) (1994) Quality Control in Cancer Chemotherapy: Managerial and Procedural Aspects. Royal College of Physicians and Royal College of Radiologists, London Kadner K (1994) Therapeutic intimacy in nursing. Journal of Advanced Nursing 19:215-2 l 8 Korsch B, et al (1968) Gaps in doctor-patient communication. 1 : Doctor-patient interaction and patient satisfaction. Pediatrics 42:855-871 Krishnasamy M (1996) What do cancer patients identify as supportive and unsupportive behaviour of nurses? A pilot study. European Journal of Cancer Care 5: 103-110 Lerman C, et al (1990) Effects of coping style and relaxation on cancer chemotherapy side-effects and emotional responses. Cancer Nursing 13:308-315 Lerman C, et al (1993) Communication between patients with cancer and health care providers. Cancer 72: 2612-2620 LeVois M, et al (I 981 ) Artifact in client satisfaction
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assessment: experience in community mental health settings. Evaluation and Program Planning 4:139-150 Lobert 8, Correia J J (1992) Antimitotics in cancer chemotherapy. Cancer Nursing 15:22-33 MacLeod Clark J, Sims S (1988) Communication with patients and relatives. In: Tiffany R, Webb P (eds) Ontology for Nurses and Health Care Professionals. Volume 2: Care and support. Harper and Row, London Meyerowitz B, et al (1983) Quality of life for breast cancer patients receiving adjuvant chemotherapy. American Journal of Nursing 83:232-235 Morrow G R, Dobkin P L (1988) Anticipatory nausea and vomiting in cancer patients undergoing chemotherapy Ireatment: prevalence, etiology, and behavioural interventions. Clinical Psychology Review 8:517-556 Morrow G R, et al (1991) Predicting development of anticipatory nausea in cancer patients: prospective examination of eight clinical characteristics. Journal of Pain and Symptom Management 6:215-223 Myerscough P R (1992) Talking with patients: a basic clinical skill. Oxford University Press, Oxford Nerenz D R, et al (1986) Anxiety and drug taste as predictors of anticipatory nausea in cancer chemotherapy. Journal of Clinical Oncology 4:224-233 Pekarik G (1992) Relationship of clients' reasons for dropping out of treatment to outcome and satisfaction. Journal of Clinical Psychology 48:91-98 Peterson L G, Popkin M K (1980) Neuropsychiatric effects of chemotherapeutic agents for cancer. Psychosomatics 21:141-153 Pickett M (1991) Determinants of anticipatory nausea and anticipatory vomiting in adults receiving cancer chemotherapy. Cancer Nursing 14:334 343 Redd W 14, Andrykowski M A (1982) Behavioural intervention in cancer treatment. Controlling aversion reactions to chemotherapy. Journal of Consulting and Clinical Psychology 50:1018-1029 Reid-Ponte P (1992) Distress in cancer patients and primary nurses' empathy skills. Cancer Nursing 15:283 292 Richardson J L, et al (1988) The influence of symptoms of disease and side-effects of treatment on compliance with cancer therapy. Journal of Clinical Oncology 6: 1746-1751 Richardson M, O' Sullivan S (1991 ) Preoperation interviews: a nursing intervention to reduce patients' anxiety. Australian Journal of Advanced Nursing 8 : 3 - 5 Rubin H R (1990) Can patients evaluate the quality of hospital care? Medical Care Review 47:267-326 Scogna D M, Smalley R V (1979) Chemotherapy-induced nausea and vomiting. American Journal of Nursing 79: 1562-1564 Sitzia J, Wood N (1997) Patient satisfaction: a review of issues and concepts. Social Science & Medicine 45: 1829 1843 Sitzia J, Wood N (1998a) Response rate in patient satisfaction research: an analysis of 210 published studies. International Journal of Quality in Health Care 10:31t-317 Sitzia J, Wood N (1998b) Development and evaluation of a questionnaire to assess patient satisfaction with chemotherapy nursing care. European Journal of Oncology Nursing (in press) Steptoe A et al (1991) Satisfaction with communication, medical knowledge, and coping style in patients with metastatic cancer. Social Science and Medicine 32: 627-632 Tanghe A et al (1994) Role of nurses in cancer chemotherapy administration. Retrospective record analysis to improve role performance. European Journal of Cancer Care 3: 169-174 Thomas S et al (1997) Is it worth the wait? A survey of patients' satisfaction with an oncology outpatient clinic. European Journal of Cancer Care 6:50-58
Study of patient satisfaction with c h e m o t h e r a p y nursing care Thompson J (1984) Communicating with patients. In: Fitzpatrick R (ed) The Experience of Illness. Tavistock, London Tierney A J, et al (1992) Knowledge, expectations and experiences of patients receiving chemotherapy for breast cancer. Scandinavian Journal of the Caring Sciences 6:75-80 Tishelman C (1994) Cancer patients' hopes and expectations of nursing practice in Stockholm. Scandinavian Journal of the Caring Sciences 8:213-222 Venn M J, et al (1996) The experience and impact of contacting a cancer information service. European Journal of Cancer Care 5:38-42
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Weingarten S R, et at (1995) A study of patient satisfaction and adherence to preventative care practice guidelines. American Journal of Medicine 99:590 596 Wilkinson S (1992) Good communication in cancer nursing. Nursing Standard 7 : 3 5 - 3 9 Williams B (1994) Patient satisfaction: a valid concept? Social Science and Medicine 38:509-516 Winningham M L, et al (1994) Fatigue and the cancer experience: the state of the knowledge. Oncology Nursing Forum 21 : 23-36 Wujcik D (1992) Current research in side-effects of highdose chemotherapy. Seminars in Oncology Nursing 8: 102-112
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This paper reports the results of a study of patient satisfaction with chemotherapy care atWorthing Hospital, UK. Patient satisfaction levels were generally high in the 173 patients who provided data, with 97% of patients happy with the service overall. Overall satisfaction was strongly associated with patient compliance. Satisfaction was expressed most consistently with chemotherapy nursing care, while lower satisfaction levels were associated with patient information in particular. Information on sideeffects was the foremost area of dissatisfaction with nursing care, and one in four patients expressed dissatisfaction with the information provided by the doctor at diagnosis.Treatment environment also emerged as an unsatisfactory area for a minority of patients.These results support previous findings that patients are strongly influenced by nurses' interpersonal manner, and that, above all, ambulatory chemotherapy patients want emotional and practical support. K e ~ o r d s : patient satisfaction, nurse-patient relations, nursing care, chemotherapy, day care, ambulatory chemotherapy
Studie (Jber die Zufriedenheit yon Krebspatienten mit der Pf/ege bei Chemotherapie Diese Arbeit berichtet (]ber die Ergebnisse einer Stuclie Liber die Zufriedenheit yon Patienten mit der Pflege bei Chemotherapie am Worthing-Krankenhaus, GB. Unter den 173 Patienten, die Angaben dazu machten, war die Patientenzufriedenheit generell hoch, wobei 97% der Patienten mit dem allgemeinen Service sehr zufrieden waren. Die allgemeine Zufridenheit stand in starkem Zusammenhang mit der Compliance der Patienten. Die gr66te Zufriedenheit wurde Libereinstimmend im Zusammenhang mit der Pflege bei Chemotherapie ge~ul]ert, wobei die Patienteninformation im besonderen weniger zufriedenstellte. Die Informationen Liber Nebenwirkungen waren dabei das am wenigsten zufriedenstellend erlebte Gebiet der pflegerischen Versorgung. AuBerdem driJckte einer yon vier Patienten Unzufriedenheit mit den Informationen aus, die ihm vom Ar-zt bei der Diagnosenmitteilunggegeben wurden. FOr eine Minderheit der Patienten stellte sich auch clas Umfeld der Behandlung als Ursache for Unzufrieclenheit dar. Diese Ergebnisse best~tigen frLihere Untersuchungen, nach denen Patienten stark von den zwischenmenschlichen Verhaltensweisen des Pflegepersonals beeinfluBt werden und dab ambulante Chemotherapiepatientenvor allem anderen emotionale uncl praktische UnterstiJtzung wiJnschen.
Estudio de/nivel de satisfacci6n en pacientes que reciben cuidados de enfermefia al recibir quimioterapia
John Sitzia BA, MPhil, Researcher,Worthin 8 Nursing Development Unit,Worthing Hospital, Lyndhurst Road, Worthing BNII 2DH, UK Neil W o o d bl/X PhD, Senior Lecturer, Health Sciences Research Centre, Chichester Institute, College Lane, Chichester PO 19 4PE, UK Correspondence and offprint requests to: John Sitzia
Este articulo muestra los resultados de un estudJo sobre el nivel de satJsfacci6n del pacJente que redJbe quimioterapia realizado en el Worthing Hospital, de Reino Unido Los niveles de satisfacci6n en los pacientes fueron generalmente altos, de los 173 pacientes que entraron en el estudio, 97% de los pacientes se mostraron contentos con los cuidado ofrecidos por el personal. En general, la satisfacci6n rue asociada fuertemente con la complacencia del propio paciente. Los niveles de satisfacci6n se mostraron mas elevados con los cuJdadosde enfermeria al poner quimioterapia, mientras que los niveles mas bajo fueron asociados con la informaci6n dada al paciente en particular. Informaci6n sobre los efectos secundarios fue el area de mayor insatJsfacci6n con los cuidados de enfermeria, I de cada 4 pacientes expresaron insatisfaccJ6ncon la informaci6n dada pot el m~dico en el diagn6stJco. El ambiente donde se da el tratamiento tambi6n aparece como un area de insatisfacci'pn para una minoria de pacientes. Estos resultados aportan fundamentos prevJos de que los pacientes son fuertemente influidos pot la forma interpersonal de set enfermeria, y sobretodo nos informan que, pacientes que reciben quimioterapia de forma ambulatoria Io que mas desean es tener soporte emocional y practico.
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Study of patientsatisfactionwith chemotherapy nursing care 143
INTRODUCTION Assessment of health-service-user satisfaction fulfils a number of valuable functions. Satisfaction research can describe health services from the users' point of view, identify strengths and weaknesses in service provision and contribute to a strategy of health-care evaluation. Some commentators suggest all satisfaction research is evaluative. However, true evaluation is a measurement of performance against pre-defined objectives (Coulter 1991, Bond & Thomas 1992), and much satisfaction research is descriptive. Patient satisfaction is a neglected area in cancer care. It may be that cancer practitioners see satisfaction work as solely evaluative, and feel that satisfaction is unimportant relative to indicators such as treatment response, survival and quality of life. This attitude negates the clear association between patient satisfaction and compliance reported from a variety of health-care settings (Pekarik 1992, Coyne et al 1995, Harris et al 1995, Weingarten et al 1995). It is interesting to note that while the volume of literature describing developments in cancer treatment is vast and ever-expanding, virtually no work has examined compliance with these treatments beyond assessment of treatment toxicity. No published rates for patient refusal of cancer treatment could be found, but dissatisfaction with conventional care as distinct from anxiety or pessimism regarding conventional therapies - may be a factor in the growing interest in non-conventional cancer therapies (Downer et al 1994). Of most importance when considering satisfaction, it has been found that cancer patients' perceptions, rather than actual health status, influence compliance behaviour (Given 1991).
Components of chemotherapy care A search of major health literature databases CINAHL, British Nursing Index, EMBASE, MedLine and PsycLIT - identified no literature specifically addressing chemotherapy patient sarisfaction, and few concerned with satisfaction assessments in more general samples of people with cancer. Therefore, studies exploring issues relevant to satisfaction were reviewed, including psychosocial issues in cancer care, patient acceptance of health care, cancer care facilities, management of side-effects and health professional-patient relations. Four aspects, or 'components', of chemotherapy care relevant to patient satisfaction were identified. 'Interpersonal' care includes communication, staff attitude and empathic behaviour, and is of great significance to the patient's psychological wellbeing. Interpersonal care is recognized as the most important satisfaction component in many healthcare settings (Abramowitz et al 1987, Rubin 1990), and has been found to correlate most strongly with
satisfaction with cancer nursing care (Burton & Parker 1994, Galbraith 1995). Tishelman (1994) found that almost all nursing incidents described by patients as 'exceptionally good' involved kindness, friendliness and emotional support, and Krishnasamy (1996) found emotionally supportive behaviours to be the most frequently identified 'helpful nurse interactions' reported by patients with cancer. Unfortunately, dissatisfaction with interpersonal care appears common among cancer patients. Communication in oncology nursing has been characterized by avoidance, poor appreciation of patients' needs and a small amount of information-giving (Fernsler 1986, MacLeod Clark & Sims 1988). Recent studies have found that both doctors and nurses typically withhold information, fail to provide explanations and block patients from disclosing their problems, using verbal behaviours such as conversational tactics (Dodd et al 1992, Wilkinson 1992, Lerman et al 1993). A 1994 literature review on the psychological support role of the cancer nurse concluded that a low level of attention is generally given to the social and psychological aspects of illness (Hanson 1994). This is particularly worrying in the chemotherapy context, as the experience is associated with a range of psychosocial problems such as anxiety and depression (Peterson & Popkin 1980, Gobel & Donovan 1987, Lobert & Correia 1992, Wujcik 1992, Bottomley 1996). A second component of satisfaction concerns the technical aspects of care. In chemotherapy care, these include drug administration, and assessment and management of side-effects (JCCO 1994, Tanghe et al 1994). Effective management of side-effects is critical to both the patient's quality of life and to compliance (Hoagland et al 1983, Buccheri et al 1989, Morrow et al 1991, Tierney et al 1992, Winningham et al 1994). It is again important to stress that compliance is determined not by the simple occurrence of side-effects but by the patient's ability to cope, which in turn is largely influenced by the support provided by health professionals (Richardson et al 1988, Ellis 1991, Given 1991). The third element of care relevant to satisfaction is patient education and information. This is important throughout diagnosis, treatment and follow-up. Satisfactory patient education has been associated with enhanced recovery after surgery or out-patient procedures, improved adherence to a chemotherapeutic regime, reduced anxiety and enhanced ability to cope with symptoms (Dodd & Mood 1981, Richardson et al 1988, Ellis 1991, Fernsler & Cannon 1991, Richardson & O'Sullivan 1991). Dissatisfaction with this component appears widespread. A review of cancer nursing studies concluded that around one third of patients with cancer express dissatisfaction with the information they receive regarding their treatment and nursing care (Wilkinson 1992). The sucEuropeanJournol o£ OncologyNursinE 2(3), i42-I 53
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cess of cancer charities in providing essential information via telephone also reflects an inadequacy in the information provided by treatment centres (Venn et al 1996). Dissatisfaction is generally associated with 'routine' information-giving; experimental educational interventions tend to be associated with far greater patient benefits. For example, Burish and Tope (1992) found an enhanced education package reduced conditioned side-effects and negative feelings, and improved general coping ability. Two further components of satisfaction are concerned with service logistics. Clinic access and treatment environment are important not only in practical terms but also in relation to patients' anxiety and anxiety-related symptoms, such as anticipatory nausea and vomiting. The association between treatment environment and patient anxiety is complex and not fully understood. It has been explained most commonly through classical conditioning theory, which associates anticipatory symptoms such as anxiety and nausea with stimuli in the chemotherapy environment, such as sounds, smells and the sight of the chemotherapy equipment (Redd & Andrykowski 1982, Meyerowitz et al 1983, Nerenz et al 1986, Andrykowski et al 1988, Morrow & Dobkin 1988, Pickett 1991). Maintaining a clean, comfortable, odour-free treatment environment may help (Scogna & Smalley 1979). This area has hardly been investigated in satisfaction terms. Poor accessibility may also cause anxiety. Greenwood (1993) pointed out that poor parking facilities can lead to lateness and increased anxiety in day-case patients. Concurring findings come fi'om a study in which patients ranked 'trouble finding somewhere to park' 12th in a list of 73 problems associated with chemotherapy (Coates et al 1983), So, the literature review confirmed that: (1) patient satisfaction is important in this context, (2) chemotherapy patient satisfaction is almost completely unexplored, and (3) several areas relevant to satisfaction can be identified. This study was concerned with further investigation of these satisfaction issues using a sample of chemotherapy patients attending the Day Ward at Worthing Hospital. A previous phase of data analysis from this project was concerned with providing a clearer taxonomy of components of satisfaction in this context (Sitzia & Wood 1998b). This analysis confirmed the five components identified via literature review, but, in addition, multidisciplinary teamwork was identified as an important issue. The primary aims of this study were to identify areas of notable satisfaction or dissatisfaction, to determine the influence of patient characteristics on satisfaction levels and to determine which components correlate most strongly with overall satisfaction. Europeon journal of" Ontology Nursing2(3), 14~[53
PATIENTS A N D M E T H O D S Study setting The study setting was Edburton Day Ward at Worthing Hospital, UK. This is a medical day unit providing a range of treatments. Approximately 75% of patient activity is haematology or oncologyrelated. Intravenous chemotherapy administration forms 20% of the workload, with an average of 140 patient episodes per month. Chemotherapy is administered by a team of 10 nurses, who always work in pairs when giving chemotherapy. The most common diseases treated are cancers of the breast and bowel, and lymphomas.
Patients From July 1994 to January 1996, 248 patients received ambulatory intravenous chemotherapy on the Day Ward. Patients aged under 18 (n = 7) and patients who commenced treatment elsewhere (n = 6) were excluded. The remaining 235 patients formed the target population. Nursing staff considered 24 patients to be too distressed and/or ill - due to disease or side-effects - to complete a questionnaire. A further 11 patients were ineligible as they had been involved in the pilot testing of the questionnaire. Therefore, 200 patients were eligible for data collection.
Data collection The study instrument was the Worthing Chemotherapy Satisfaction Questionnaire (WCSQ). This is a self-report questionnaire with 47 items. Twenty seven are satisfaction questions, using either a 100 mm VisualAnalogue Scale (VAS) or a 5-point adjectival scale. The instrument also contains four prompts for comments. The instrument displays reasonable reliability and validity (Sitzia & Wood 1998b). Questionnaires were distributed in two ways: (1) face-to-face, handed to the patient by nursing staff, with a stamped self-addressed envelope (SSAE) to return the questionnaire; (2) by mail to the patient's home, with a SSAE and a covering letter. If no response was obtained within approximately a month, a second questionnaire was sent.
Data analysis Quantitative data were analysed using SPSS. Nominal or ordinal data were analysed using chi square, Mann Whitney U or Kruskal-Wallis H tests. Interval level data, unless severely skewed, were analysed using Student's t-test or one-way analysis of variance (ANOVA). Qualitative data were analysed using a constant comparative method of content analysis (Field & Morse 1985). QSR NUDeIST software was used for qualitative data
Study of patient satisfaction with chemotherapy nursing care coding and categorization. Each sentence of text was defined as a 'text unit'.
Assessment of'overall' satisfaction 'Overall' satisfaction for each respondent was assessed in two ways: (1) by a single 'global' item and (2) by a composite score (Henley & Davis 1967). The score was derived by calculating the mean average of the results of individual satisfaction items for each of six components, with each item scored from 1 (low satisfaction) to 5 (high satisfaction). The sum of these averages formed the composite score. Therefore, the minimum possible score was 6 and the maximum 30. Associations between individual items and these two indicators were evaluated using the Spearman rank correlation coefficient.
RESULTS
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in a number of respects. First, participants were younger than non-participants (mean difference = 3.9 years, 95% confidence interval -- 7.7 to 0.2 years). ANOVA identified only the 'too ill' subgroup as having a significantly higher age than the respondent group (mean -- 62.8 years). Second, 68% of the participant group were solid tumour patients whereas 52% of the non-participant group were solid tumour patients. The 'too ill' and the 'missed' sub-groups had the smallest proportions of solid tumour patients, 42% and 40% respectively. Third, 29% of non-participants, as opposed to 56% of participants, were involved in a concurrent study at the site assessing side-effects. None of the 'missed' sub-group were involved, only 21% of the 'too ill' group were involved and only 29% of nonresponders were involved. Finally, 88% of participants survived at least 6 months post-chemotherapy whereas only 53% of non-participants survived 6 months. The greatest difference was between participants and the 'too ill' sub-group, of whom only 12% survived to 6 months.
Sample characteristics Due to administrative error, 10 of the 200 eligible patients were not asked to complete a questionnaire. A further 17 patients failed to return a completed questionnaire. The response rate was 86% including 'missed' patients, 91% excluding 'missed' patients. Participants formed 74% of the study population. Table 1 presents participant and non-participant characteristics. 'Regime frequency' indicates the number of visits per month to the ward for chemotherapy treatment. 'Regime toxicity' data refer to a regime toxicity rating from 1 (low toxicity) to 3 (high toxicity). 'Non-compliance' was defined narrowly as premature cessation of chemotherapy at a patient's request due to severity of experienced side-effects. The two groups differed
Characteristic n Age in years Gender Regime frequency Regime toxicity
Diagnosis Non compliant Involved in other clinical studies Survived 6 months post-chemotherapy
mean [standard deviation] range female male median days per month high medium low solid tumour haematological
Accessibility 96% of the sample felt that chemotherapy appointment times suited their needs 'very well' or 'fairly well'. 83% of respondents stated that Worthing Hospital was accessible; however, only 54% had 'no problem' getting to the hospital. 93% of those who reported an access problem had arrived by private car rather than other means (Z2 = 14.95, P < 0.001). Parking at the hospital was cited as a problem by 52% of those arriving by car.
Ward environment 43% of patients commenced treatment within 15 minutes of arrival on the ward, and a further 44%
Participants
Non-participants
n(%)
n(%)
173 56.2 [ 13. I] 21-84 120 (69%) 53 (3 I%) 2 65 (38%) 72 (42%) 36 (21%) I 17 (68%) 56 (32%) 5 (3%) 97 (56%)
62 60.1 [12.1] 34~85 39 (63%) 23 (37%) 2 23 (37%)
153 (88%)
33 (53%)
Test result t = 2.0, P < 0.05 Z 2 = 0.6, n.s. U = 5037, n.s. Z 2 = 5. I, n.s.
18 (29%) 21 (34%) 32 (52%) 30 (48%) 2 (3%) 18 (29%)
Z 2 = 4.4, P < 0.05 Z ~ = 0.0, n.s. Z 2 = 13.7, P < 0.01 Z 2 = 34.3, P < 0.01
n.s.: not significant. EuropeQnjournol of OntologyNursing2(3), 142-153
146 EurapeanJournal of OntologyNursing waited between 15 and 30 minutes. 21% of patients were less than satisfied with their waiting time. Dissatisfaction was strongly associated with longer waiting times (%2 = 45.9, P < 0.0001). 92% of the sample were happy with the level of privacy while receiving chemotherapy on the ward. 66% of respondents expressed a preference for receiving chemotherapy 'in public' on the open ward, 7% expressed a preference for a curtained cubicle and 27% expressed no preference. 26% of patients felt 'very' or 'fairly' anxious while receiving chemotherapy. Dissatisfaction with privacy was strongly associated with anxiety (H = 13.5, P < 0.01). 25% of text units concerned ward environment, one in five of which expressed dissatisfaction. These comments were mostly concerned with the ward not being purpose-built, not being cancer-dedicated and being busy. This was linked to heightened anxiety by some patients, for example: The Day Ward is often very busy leading to a longer wait than anticipated for treatment. This seems to be due to lack of staff. Seeing the staff have to rush increases the anxiousness of people to be treated. I would appreciate a separate waiting room that we were able to sit in when awaiting treatment.
aspects of the lack of privacy and high levels of activity, such as the following: The proximity of patients with problems is supportive to me,
similar
I imagine more privacy could be involved in a less pleasant environment.
Interpersonal aspects of care Six 'interpersonal nursing care' items were assessed by VAS (Table 2). The item assessing satisfaction with 'reassurance and support' recorded the highest mean score, the item 'concern for your privacy when talking about your personal details' the lowest. The mean average score for the six items was 66.9 (SD = 28.0). Two further items used a 5-point scale to ask whether nurses and consultants could be 'more approachable'. Whereas only 3 patients (2%) felt that their nurses could be more approachable, 32 (19%) agreed that their consultants could be more approachable. 37% of text units referred to the interpersonal aspects of nursing care, less than 3% of which expressed dissatisfaction. Dissatisfaction was expressed over privacy and lack of time, as exemplified in these comments: When taking personal details on first visit, I feel this should be done more privately.
This anxiety seems, in part, a concern for safety when receiving chemotherapy:
The nurses are unsatisfactory only when it comes to privacy.
Chemotherapy was being given in the corridor of the Day Ward. The porter just walked past with his large trolley while I was sitting there having chemo. I never felt so exposed and very anxious.
The fact that 97% of relevant comments were favourable supported the high levels of satisfaction in the quantitative data. Comments covered two areas: nurses' empathy and nurses' attitude. 'Empathy' comments used words such as 'supportive', 'sensitive' and 'understanding', for example:
The Day Ward is obviously not purpose-built. I think patients would be happier in a specially constructed ward. However, 80% of comments regarding ward environment were favourable. Many noted positive
I have been given the best treatment possible. The nursing staff are caring, kind, dedicated people. To them the patient comes first in all respects.
N u r s i n g care i t e m
mean
SD
Interpersonal care items: Reassurance and support Having time to tall< to you Appreciation of your individual needs Concern for your relatives/friends Concern for privacy when giving treatment Concern for privacy when discussingpersonal details.
76.2 75.9 71,5 65.0 58.8 57.0
27.5 26.7 29,5 33.5 33,4 34,3
Technical care items: Technical skill in giving chemotherapy Help given in controlling or reducing side-effects Awareness of side effects Medical knowledge of your problem.
78.3 71.1 70.6 68.1
26.3 30.3 31.1 31.1
Europeanjournal of Ontology Nutsing 2(3), 142-153
Study of patient satisfaction with chemotherapy nursing care In my opinion the Day Ward nurses give the best attention and reassurance possible. I cannot say how much they have helped during my treatment. 'Attitude' comments used words such as 'cheerful', 'friendly' and 'nice': Everyone is so friendly and cheerful they put me at ease. All the staff are very friendly and do the utmost in making me feel relaxed. Twenty units (4% of all text units) were specifically concerned with physician care. Seventeen of these were unfavourable. A lack of empathy from the physician at critical times was one theme: Initially more information and reassurance needed. In my case I saw a doctor I had never seen before who said 'Yes, you have cancerous cells. We will arrange an appointment for you.' I was in and out in three minutes. I had no support from the surgeon and his SHO and found him and his team very dismissive and unsympathetic. Poor communication skills and inadequate appreciation of the importance of information for patients were another theme: One must be given all opportunities to be told as soon as possible and not left to guess what problems they have. Very hard on your side of the fence. The consultant I was under at that time, I felt I was dragging information from him. Finally, lack of time to talk in consultations was commented upon: I feel that at the initial appointment where the diagnosis is first discussed and information is given, more time should be allowed for the patient as this can be a traumatic, distressing appointment. The consultants continually have a full waiting room.
Technical aspects of care Four VAS items assessed technical aspects of nursing care. As with the 'interpersonal' items, responses to these items were skewed towards high values (Table 2). Nurses' 'technical skill in giving chemotherapy' achieved the highest scores, 'medical knowledge of your problem' the lowest. Thirty-nine text units (7% of all units) addressed technical aspects of nursing care, 30 of which expressed satisfaction. Most comments were nonspecific, referring to the nurses as 'efficient' or 'professional' or describing the treatment as 'excellent', 'first class' and so on. Comments referring to details in chemotherapy administration procedures are particularly noteworthy:
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The treatment I received, and the method and care it was administered with, was excellent. The staff are putting patients at ease all the time, at the same time double checking the medication. An excellent system. The treatment I have had was similar to that received 2 years ago at R - - , except that at Worthing a nurse sat with me all the time which was a bonus. Nine comments expressed 'dissatisfaction'. One was concerned with cannulation skills, the others with side-effects: Could do with a lot more help controlling and reducing side-effects of chemo. More information in controlling or reducing side-effects and details of medication that can help control side-effects in the early stages.
Patient information On diagnosis, disease-related information was provided in almost all cases by consultants: 94% of patients received verbal information, 3% of whom also received written information. 6% of respondents (n = 10) stated that the consultant had provided no information about their disease. 76% of the sample were 'fairly happy' or 'very happy' with the level of information received. 15% of the sample (n = 24) were either 'fairly unhappy' or 'very unhappy'. There was a strong association between satisfaction with information on diagnosis and 'approachability' of the consultant (Z~ = 13.5, P < 0.001). Chemotherapy-related information was provided by both consultants and nurses. 82% of patients received either verbal or written information from the consultant, and 60% received either verbal or written information from Day Ward nurses. Three patients stated that they received no information from any hospital source. Two questions assessed satisfaction with chemotherapy-related information. In response to the first, 85% of patients were either 'fairly happy' or 'very happy' with the information received. Seven patients (5%) were either 'fairly unhappy' or 'very unhappy'. The second question was a VAS item which assessed satisfaction with the 'explanation of procedures and treatment' provided by Day Ward nurses. The mean score was 63.4 (SD = 32.3). Two 5-point ordinal items assessed satisfaction with information on side-effects. 85% of patients (n = 145) were 'very happy' or 'fairly happy' with 'practical advice about side-effects when they occur'. Three patients (2%) were 'very unhappy', a further seven (4%) 'fairly unhappy'. Fewer patients, 79%, were happy with the advice given regarding self-care between chemotherapy cycles. 26% of the 563 text units commented upon patient information. Unlike all the other themes in the qualitative data, only a minority of relevant units Europeanjournal of OncologyNursing 2(3), 142 153
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(44%) expressed satisfaction. Satisfied comments covered both diagnosis-related and treatmentrelated information: The effects and treatment were given to me verbally plus an audio tape of the interview. I don't see how it can be improved. Very satisfied with information given and the opportunity to talk quite openly. Dissatisfied comments covered four aspects of care: prognosis/progress, regime/drags, side-effects and information-giving procedures. The overriding complaint was the lack of clear, detailed information at every stage of treatment, as these examples illustrate: I wish the information given about my problem was explained in more detail and what chances of the cancer recurring is. Overall I am happy with the service provided although I am still totally ignorant of everything that has happened. I would have liked to have had the choice of having had everything explained to me in detail. I could have asked more but everyone is so busy and it isn't always easy to know exactly what to ask. Patients should be told exactly what chemo/radiation entails and not just 'This is the treatment you will have' but what one expects to have to face. I personally learnt more from a good friend than I did from hospital. I would have liked more written information on the chemotherapy that I was having - type of drugs, length of treatment. I would prefer more in depth information on the side-effects of the drugs I am being given.
Multidisciplinary t e a m w o r k 20% of respondents (n = 33) felt the multidisciplinary framework for care at Worthing Hospital could be improved, with a further 29 patients expressing no opinion. This component was the subject of 4% of all comments, three-quarters of which were not favourable. Poor inter-departmental communication and poor integration of services were highlighted:
83% of respondents stated they were 'very happy' overall, with a further 14% 'fairly happy'. A histogram showing the distribution of composite score values is presented as Figure 1. The mean score was 24.1 (SD = 3.8). Spearman correlations were used to determine which of the six components correlated most highly with the composite score (Table 3). The strongest correlation was with technical aspects of care (P = 0.66), the weakest with clinic accessibility (9 = 0.37). However, the mean correlation for interpersonal aspects of nursing care was 9 = 0.68. The 'global' item and the composite score had a (Spearman) correlation of P = 0.47.
Determinants of satisfaction No associations were found between satisfaction in any component and the following patient characteristics: age, diagnosis, regime toxicity, number of previous visits to the ward or 6-month survival postchemotherapy. Men's scores were lower than women's for all interpersonal nursing care items except for the items regarding privacy. This difference was significant for nurses' 'reassurance and support' (mean difference = 11.2, t -- 2.3, P < 0.05). Three characteristics showed more consistent associations. Firstly, higher levels of chemotherapyrelated anxiety were associated with dissatisfaction with two aspects of ward environment: level of privacy on the ward (Z2 = 13.2, P < 0.001) and being treated among other patients (Z2 = 5.7, P < 0.05). More anxious patients (n = 78) were also significantly less satisfied than more relaxed patients (n = 94) with chemotherapy nurses' concern for privacy when discussing personal details (mean difference = 18.6, t = 3.5, P < 0.01) and concern for privacy when giving chemotherapy (mean difference -- 13.4, t = 2.6, P < 0.01). Secondly, patients who were also participants in the concurrent study of chemotherapy side-effects (n = 97) were more satisfied than non-participants (n = 76) with almost every aspect of chemotherapy
30,
I appreciate that my surgeon and oncologist communicated with each other but was confused when one thought I had 'a mass' in my abdomen whilst the other thought it was probably 'lots of little bits'. Blood test, consultation, and treatment should be on the same day. The various departments do not seem to dovetail together sufficiently.
g
lO,
m
~E z
0 6.0
'Overall' satisfaction The 'global' item which assessed satisfaction on a 5-point adjectival scale produced very high scores. EuropeanJournal of Ontology Nursing 2(3),
142-- 153
m
20,
n n
Composite
12.0
ITU I 18.0
24.0
satisfaction score
Figure I Histogram of composite satisfactionscore (minimumpossible= O, maximumpossible= 30).
30.0
Study of patient satisfaction with chemotherapy nursing care
Component
Number of items
Correlation with composite score Range
Mean
Accessibility Ward environment Interpersonal care
3 3 9
Technical care
4
Patient information Multidisciplinaryteamwork
5 I
0.30 0.41 0.42-0.45 0.42 0.71 0.61 0.70 0.49 0.73 -
0.37 0.44 0.60 0.66 0.59 0.63
nursing care. This difference reached statistical significance in three items: nurses' technical skill in giving chemotherapy (mean difference = 12.4, t = 2.9, P < 0.01), reassurance and support (mean difference = 9.6, t = 2.2, P < 0.05) and nurses 'having time to talk to you' (mean difference = 9.3, t = 2.1, P < 0.05). Finally, patients who were non-compliant (n = 5) were less satisfied with all aspects of nursing care than patients who were compliant (n = 172). Significant differences were recorded in: nurses' technical skill in giving chemotherapy (mean difference = 24.9, t -- 2.1, P < 0.05), nurses' medical knowledge of your problem (mean difference = 50.4, t = 3.7, P < 0.01), reassurance and support (mean difference = 25.0, t = 2.0, P < 0.05), nurses' awareness of side-effects (mean difference = 53.7, t -- 4.0, P < 0.01) and help given in controlling sideeffects (mean difference = 49.3, t = 3.7, P < 0.01). Non-compliant patients were also less satisfied with every area of patient information. The difference in satisfaction with 'practical advice on what to do about side-effects' was statistically significant (U = 142, P < 0.01). A significant difference in overall satisfaction (composite score) was found in two characteristics. A weak difference was found with anxiety: more anxious patients recorded a significantly lower composite score than did less anxious patients (mean difference = 1.3, t = 2.2, P < 0.05). A stronger difference was found with compliance, with non-compliant patients far less satisfied overall than compliant patients (mean difference = 6.0, t -- 3.5, P < 0.01).
DISCUSSION
An instrument with acceptable validity and reliabilIty was used in this study (Sitzia & Wood 1998b). The response rate is high for a satisfaction study (Sitzia & Wood 1998a). The study population was restricted to adult patients with common cancers receiving intravenous out-patient treatment with common regimes. These patients form the bulk of the chemotherapy workload in cancer units in the
149
UK. These results are not generalizable to patients with less common diseases who typically receive treatment in a cancer centre. The fact that only 12% of very ill or distressed patients survived 6 months post-chemotherapy endorses the decision of nursing staff to exclude these patients from the study. Very ill patients are commonly omitted from satisfaction surveys. Some commentators believe this group is inherently likely to be less satisfied and so their exclusion skews satisfaction data (Rubin 1990). This is a complex issue but it is worth noting that in this study there were no significant differences in the satisfaction levels of those respondents who survived 6 months (n = 153) and those who did not (n = 20). The results of this study clearly suggest that satisfaction levels are generally high among this group of ambulatory chemotherapy patients in that most patients are satisfied with most aspects of care. This general satisfaction is perhaps to be expected in cancer care: cancer patients need to believe that their care providers are highly skilled and fully dedicated because their lives literally depend on their healthcare team (Blanchard et al 1990). Satisfaction was expressed most consistently with chemotherapy nursing care, while patient informarion in particular was associated with lower sarisfaction levels. Patient information generally appears a significant weak point in chemotherapy care, particularly with regard to side-effects. One problem in providing side-effects information is the scarcity of published regime-specific data, such as patterns in prevalence and severity. Another often-cited problem is that cytotoxic agents are unpredictable, and so, sensibly, information is as vague as possible. A more general problem is that different patients want different levels of information and participation in medical decision-making. There is evidence to support the model of blunters and monitors in the chemotherapy context (Gard et al 1988, Lerman et al 1990, Steptoe et al 1991). These problems are not easily resolved and deserve substantial investigation. It is clear that satisfaction with information also depends on good communication from, and between, health professionals. In this study, sideeffects related information was foremost among Europeanjournal of OncologyNursing 2(3), 142-~53
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areas of dissatisfaction with nursing care. 15% of patients were less than happy with the practical advice for treatment of side-effects, and 21% with advice for self-care during chemotherapy. 56% of comments regarding information (including sideeffects information) expressed dissatisfaction. Comments indicate two perceived misjudgements on the part of nursing staff: they underestimated the severity of the side-effects and overestimated patients' ability to cope. These characteristics were also reported by Fernsler (1986). The quantitative data indicated that dissatisfaction was most evident in the non-compliant patients, and patients' comments suggest that satisfaction is also related to the patient's perception of the effort being made by the nursing staff to help with side-effects, rather than any objective success in controlling symptoms. In line with the findings of Richardson and colleagues (1988) and Ellis (1991), these results lead to the conclusion that satisfaction is determined not by objective success in side-effects management but by the patient's perception that health-care staff have invested time and effort in that management. Dissatisfaction was more widespread with information from doctors than from nursing staff. A quarter of patients were dissatisfied with information at diagnosis, and one in five felt their consultant could be more approachable. Patients' comments clearly showed that dissatisfaction, when present, was profound. Traditionally, few health-care professionals receive training in communication skills. Thompson reported that many physicians acquire a consultation style early in their career and use the same style lbr every patient, regardless of individual needs or preferences (Thompson 1984). Fallowfield (1996) identified four reasons for oncologists' failure to communicate effectively: a lack of awareness of communication problems; fear of unleashing difficult emotions; fear of being blamed; and poor training in communication skills. In recent years, communication training has become recognized as a primary component of medical education in the UK, and therefore it may be hoped that future physicians will, as a matter of course, 'bring to their work the skills and attitudes of caring ... above all, sensitive and open inter-personal communication' (Myerscough 1992). Poor communication was identified as the sole problem with the multidisciplinary team, with a small number of patients receiving contradictory pieces of information. This fragmentation is not uncommon and is largely due to NHS hospital services traditionally being organized around clinicians (Allsop 1996). However, this system is changing, as reflected by the emphasis on a patientcentred approach and structured multidisciplinary links in the Calman-Hine report for the reorganization of cancer services in the UK (Doll 1995). It is also worth noting that the US model of 'managed care', designed to ensure coordination of care across disciplines, is attracting interest in acute settings in the UK (Benton 1995). EuropeanJournal of OncologyNursing2(3), 142--153
Among the most interesting results from this study are those for determinants of satisfaction. One surprising result was that satisfaction appeared unaffected by respondent age, which is regarded as the most consistent determinant of satisfaction. The current results suggest that age is not associated with satisfaction in the ambulatory chemotherapy context. It was also surprising that men were less satisfied than women with interpersonal aspects of nursing care, as gender does not appear influential in other contexts. One hypothesis is that the chemotherapy nursing staff, who were all female, simply empathized more readily with female patients. A second explanation - and the two are not mutually exclusive - is that nursing staff did not perceive male patients as needing the same amount of interpersonal care as female patients. Of course, it may be that there is no actual difference in care but that, for some reason, men are less satisfied. This is a complex area, as illustrated by the work of Reid-Ponte (1992). Reid-Ponte found that the more skilled the nurse was in 'perceiving, feeling and listening', the more distress the patient experienced. Reid-Ponte's explanation was that although the empathic nurse elicits" more distress, this does not necessarily mean the nurse is alleviating the distress. It may be that the chemotherapy nurse's role is not to alleviate suffering but to recognize symptoms of psychological distress and to refer the patient for specialized support. In short, caring behaviour may engender patient satisfaction but may not be the most effective intervention for the patient's problem. A significant proportion of patients, 42%, did not feel relaxed while receiving chemotherapy. There was a clear association between pre-treatment anxiety and dissatisfaction with privacy. As anxiety in the chemotherapy context is firmly associated with symptom distress, it is fair to hypothesize that anxious patients regarded lack of privacy as a contributory factor to distress. Patients' comments seem to establish that high activity on the ward, the 'hustle and bustle', was associated with anxiety. However, in addition to physical surroundings, the role of nurses' interpersonal skills in constructing a 'good environment' was clearly identified. The results for treatment environment should be carefully considered by chemotherapy nurses. In particular, although only 7% of this sample preferred to be treated in private, with respondents clearly stating the support gained from mixing with other patients, a choice between 'private' and 'public' administration is clearly desirable. These results suggest that it is important that chemotherapy staff be aware of each patient's anxiety state and take measures to reduce this anxiety wherever possible. Given the evidence linking environmental stimuli with anxiety and psychosomatic symptoms, it is puzzling that no experimental or indeed theoretical work on chemotherapy treatment environment appears to have been carried out. Such work is important and long overdue.
Study of patient satisfaction with chemotherapy nursing care The difference in satisfaction with nursing care between participants and non-participants in the concurrent side-effects study is intriguing. T h e sole observable difference in care for the two groups was that the participants were asked to complete a sideeffects questionnaire after e a c h cycle of chemotherapy. It m u s t be a s s u m e d that this 'additional' attention e n h a n c e d patients' positive perceptions of both interpersonal and technical aspects of care, but it seems i n c o n g r u o u s that n o differences appear in the results directly related to side-effects, m o s t notably nurses' 'awareness of side-effects or other problems you m a y b e e x p e r i e n c i n g ' . These results m a y in fact b e a manifestation of the H a w t h o r n e Effect: the additional attention implicit in the data collection process and the apparent concern of the nurses about the patient's side-effects have led to a positive perception, not of the nurses' awareness of side-effects but o f the nurses' concern for the patient (LeVois et al 1981). Several models to i n f o r m patient satisfaction results have b e e n proposed (Sitzia & Wood 1997). These results seem appropriate to two. First, the results support the affective m o d e l o f satisfaction (Korsch et al 1968). This m o d e l proposes that health care is primarily an emotional experience for patients, particularly those with serious illness, and so satisfaction is assessed primarily on the health professional's interpersonal b e h a v i o u r such as emotional support, level o f interest in b o t h medical and personal p r o b l e m s and time spent w i t h the patients. This model of affective b e h a v i o u r concluded that ' d e v o t i o n ' is the m o s t i m p o r t a n t aspect of care for m a n y patients, contributing more than any other to patient satisfaction. Second, the results of this study support the 'discrepancy' m o d e l (Williams 1994). This model argues that 'the expression of dis/satisfaction is g o v e r n e d primarily b y (negative) expectations as to w h a t will/should not h a p p e n ... It is likely that expressions of satisfaction will occur assuming n o negative expectations h a v e been transgressed. As a result we w o u l d expect a wide r a n g e of b e h a v i o u r to be permissible with only socially extreme behaviour causing dissatisfaction' (Williams 1994). In conclusion, this study revealed high levels of satisfaction. Patients do appear to discriminate between various aspects of care, supporting the m u l t i d i m e n s i o n a l m o d e l of patient satisfaction in this context. The m o s t notable area of dissatisfaction was patient information and education. Levels of satisfaction with c h e m o t h e r a p y nursing care were high. S o c i o d e m o g r a p h i c characteristics appear not to determine satisfaction in this context; however, patient compliance and anxiety do influence satisfaction in some areas. This study strongly supports previous work w h i c h indicates that, above all, patients with cancer are influenced b y nurses' interpersonal m a n n e r (Kadner 1994, T i s h e l m a n 1994, Halldrrsd6ttir & H a m r i n 1997, T h o m a s et al 1997). A m b u l a t o r y c h e m o t h e r a p y patients w a n t emotional
I 51
and practical support; they want their concerns to b e listened to and their questions to b e answered. It remains the responsibility of the c h e m o t h e r a p y nurse to ensure these needs are met.
ACKNOWLEDGEMENTS
The authors would like to thank the patients who took part in the study and the nursing staff of Edburton Day Ward Nursing Development Unit at Worthing Hospital for assistance with collection of data. This study was undertaken by one of us (JS) as part fulfilment of the requirements for the degree of MPhil at the University of Southampton.
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Editor's Note
A paper describing the development and testing of the Worthing Chemotherapy Satisfaction Questionnaire will be published in Volume 3 of European Journal of Oncology Nursing. Europeanjournol of Ontology Nursillg 2(3), t4~153
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