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Nurse-led outpatient clinics in oncology care – Patient satisfaction, information and continuity of care
European Journal of Oncology Nursing xxx (2015) 1e7
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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care Catharina Bau Berglund a, Eva Gustafsson a, Hemming Johansson a, b, Mia Bergenmar a, b, * a b
Department of Oncology, Karolinska University Hospital, SE-171 76 Stockholm, Sweden Department of Oncology-Pathology, Karolinska Institutet, Karolinska University Hospital, SE-171 78 Stockholm, Sweden
a r t i c l e i n f o
a b s t r a c t
Article history: Received 24 August 2014 Received in revised form 8 January 2015 Accepted 11 May 2015
Purpose: The aims of the present study were to investigate patients' satisfaction with nurse-led clinics, patients' perception of received information and associations between continuity of care and satisfaction with information. Methods: Questionnaires on patient satisfaction were sent to consecutive samples of patients after they attended a nurse-led clinic at the Department of Oncology, Karolinska University Hospital in 2007, 2009, 2011 and 2013. Patients' perceptions of received information were evaluated in 2011 and 2013, by the EORTC QLQ-INFO25. Data on registered continuity of care were retrieved from the patients' medical record. Results: A total of 962 patients responded (79%) to one of the four surveys. Patients' satisfaction with nurse-led clinics was stable over time. More than 90% rated nurses' interpersonal manners and the care at the clinic as “good”, the waiting time as “acceptable”, and the length of appointments as “sufficient”. Over 90% responded that it was important to meet the same nurse and 62% reported they actually did so and 52% stated they were assigned a named nurse navigator. More than 75% rated the information at their latest visit at a nurse-led clinic as “completely” sufficient. However, 48% expressed wish for more information “during the current disease”. No statistical significant associations were found between “satisfaction with information” and continuity of care. Conclusions: Patients' satisfaction with nurse-led clinics was stable over time with generally high figures with the exception for continuity of care and information, areas in which improvements are needed. The wide variety in information needs might require a person-centred approach. © 2015 Elsevier Ltd. All rights reserved.
Keywords: Nurse-led clinics Oncology care Patient satisfaction Patient information EORTC QLQ-INFO25 Continuity of care Questionnaire
Introduction Patients' experiences are considered valuable indicators in the evaluation of the quality of care and important end points in quality dart et al., 2010). Patient satisassessment at many hospitals (Bre faction has been defined as the patient's evaluation of the care, including both actual experiences and the patient's characteristics dart, 2001). Although much empirical work has been per(Bre formed, there are gaps in the theoretical underpinning regarding the concept patient satisfaction (Sitzia and Wood, 1997; Ware et al., 1983; Williams, 1994). Nevertheless, positive associations have been reported between high levels of patient satisfaction with care,
* Corresponding author. Department of Oncology, Karolinska University Hospital, SE-171 76 Stockholm, Sweden. E-mail addresses: [email protected] (C.B. Berglund), eva.g. [email protected] (E. Gustafsson), [email protected] (H. Johansson), [email protected] (M. Bergenmar).
adherence to treatment and health outcomes (Borras et al., 2001; Gupta et al., 2013). Communication/information and continuity of care have been identified as important factors for patient dissatisfaction in addition to waiting time, duration of consultations, availability and €ila € et al., 2008). Questionnaires being used for accessibility (Sa measuring patient satisfaction within oncology outpatient settings commonly include items comprising of education, the possibility of making choices and continuity of care, reflecting their importance dart et al., 2014). Despite the usually high levels of patient (Bre satisfaction with care, patients often report deficiencies in patient information. Having access to correct, comprehensible information is a prerequisite for making informed decisions. Additionally, adequately informed patients report lower levels of anxiety and better quality of life (Cox et al., 2006; Davies et al., 2008; Husson et al., 2011). Meeting patients' information needs have been described as a core component in cancer care (Harrison et al., 2009). Yet, it has been shown that health care providers usually
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Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
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C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7
underestimate patients information needs (Caprici et al., 2005). Positive associations between reduced health information needs and experienced continuity of care have been reported among cancer patients (King et al., 2008). Improvement of the continuity of care was one of the main requests from outpatients with cancer (Bergenmar et al., 2006). Continuity of care has been defined in several ways but usually with insufficient conceptual clarity. Consequently, continuity of care has been measured in many different ways (Reid et al., 2002). However, the following prerequisites need to be met in order to fulfil the lowest common denominator; care have been provided over time and received and experienced by an individual patient (Reid et al., 2002). During cancer treatment, actions should be taken to increase the consistency of staff and information (Barnet and Shaw, 2013). In the “National cancer strategy for the future”, it was formulated that every cancer patient should be assigned a named nurse navigator who is responsible for keeping the patient informed and ensure the patient's involvement and influence in their care (Swedish Government Official Reports SOU, 2009:11). During the last decades, there has been a considerable shift from inpatient admissions to outpatient visits within cancer care. In addition, the rapid development of treatments within oncology continuously requires new care interventions to meet patients' needs and to ensure their safety. Different strategies have been tested in order to meet patients' needs, e.g. follow-up by telephone and at nurse-led clinics (Cusack and Taylor, 2010; Lewis et al., 2009). At the Department of Oncology, Karolinska University Hospital, Solna, nurse-led clinics currently account for about 15% of outpatient care episodes, excluding radiotherapy and ambulatory chemotherapy. Nurse-led clinics are embedded in the clinical pathway for patients during their course of treatment at the Department of Oncology and patients attending the nurse-led clinics are undergoing curative, adjuvant or palliative treatments. Nurses perform symptom controls, controls of side effects and skin examinations; they administer treatment; they inform, support and educate patients and families before and during oncological treatment. Surveys to show patients' perception of nurse-led clinics have been performed every two years since 2007 in order to evaluate how patients' needs are met in terms of satisfaction, information and continuity of care (Sitzia and Wood, 1997). The main objectives of this study were to investigate: Patients' satisfaction with nurse-led clinics over time Patients' perception of received information Associations between continuity of care and satisfaction with information The agreement between patient reported and registered continuity of care
the fourth during two weeks in 2013 (n ¼ 287). During the two most recent surveys, patients were asked also to complete the questionnaire EORTC QLQ-INFO25, as described below. Registered continuity of care, i.e. date and nurse, was retrieved from the electronic medical files of patients who completed the EORTC QLQINFO25 in the 2011 survey. Instruments The questionnaire measuring patients' satisfaction was originally developed for the patientephysician outpatient encounter. It proved to capture changes in patient satisfaction over time (Bergenmar et al., 2006). The questionnaire has since been adapted to the patient-nurse outpatient encounter (Gustafsson, 2008). It consists of 12 multiple-choice items, including items concerning waiting time, continuity of care, length of visit, information, interpersonal manner and fulfilment of expectations (Table 1). The patients were asked to respond to the questionnaire, keeping their last visit at the nurse-led clinic in mind. Two questions about nurse navigator and time as patient at the Department of Oncology were added to the 2013 survey. The questionnaire measuring patients' perception of received information was developed within the European Organization for Research and Treatment of Cancer's Quality of Life Group. The questionnaire EORTC QLQ-INFO25 consists of 25-items about the information received about the disease (4 items), medical tests (3 items), treatment (6 items) and other services (4 items), and 8 single items (different places of care, self care strategies, written information, information on CD or tape/video, satisfaction with received information, wish for more or less information and if the information overall had been helpful). Response format is a fourpoint scale from 1 (“Not at all”) to 4 (“Very much”). Four items have response format “Yes” or “No”. The EORTC QLQ-INFO25 is a validated module suitable for clinical practice and research (Arraras et al., 2010). The time frame is “during the current disease or treatment period”. Patient reported and registered continuity of care Patients responding that they had met the same nurse as at their previous appointment, see Table 1, question 3, fulfilled our definition of patient reported continuity of care. Patients' registered continuity of care was measured by controlling each patient's electronic file regarding completed contacts with nurses one year back in time from the date of the visit the patients evaluated in the patient satisfaction questionnaire. In addition, the type of contact was registered (i.e. visit or telephone) and which specific nurse the patient been in contact with.
Methods
Statistical methods and considerations
Patients, measurement points and procedures
Responses to the patients' satisfaction questionnaires were categorized as shown in Table 1. Responses to question 3 (see Table 1) were used to determine patient reported continuity of care, by firstly excluding any new patients and then calculating the fraction of patients who responded “yes”. Registered continuity of care was defined as “good” if patients had registered contact with the same nurse at the last two follow-up appointments in their medical records. In the analysis, comparing patient reported continuity of care with registered continuity of care, telephone contacts were excluded. Responses to the items included in the EORTC QLQ-INFO25 were linearly transformed to scales, ranging from 0 to 100, according to the EORTC manual (Fayers et al., 2002). Higher scores, represent having received more information, wishes for more
Surveys of patients' perception of nurse-led outpatient care were performed at the Department of Oncology, Karolinska University Hospital, Solna in 2007, 2009, 2011 and 2013. An information letter, questionnaire and a pre-paid envelope were sent to all patients who had attended the nurse-led clinics shortly after their visit. The letter informed patients about confidentiality and that it was voluntary to respond. One reminder was sent to those not responding within two weeks. Patients who did not want to participate were advised to return the questionnaire uncompleted in order to avoid a reminder. The first survey was carried out during three weeks in 2007 (n ¼ 142), the second during four weeks in 2009 (n ¼ 362), the third during three weeks in 2011 (n ¼ 421) and
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7 Table 1 Items, response categories and grouping of response categories measuring patients' perception of their visit at the nurse-led clinic. Item
Response categories
Compiled categories
1. For how long after your appointed time did you have to wait to meet your nurse? <15 min <15 min 15e30 min 15 min 30e45 min 15 min 45e60 min 15 min >60 min 15 min 2. How did you consider your waiting time? Far too long Too long Too long Too long Acceptable Acceptable I did not have to wait Acceptable 3. Did you meet the same nurse as you did at your previous appointment? This is the first visit Excluded Yes Yes No No 4. How important is it to you, to meet the same nurse at every visit at the nurse-led clinic? Not important at all Not important at all Of some importance Important Quite important Important Very important Important 5. For how long did you meet the nurse at the nurse-led clinic? <5 min <15 min 5e15 min <15 min 15e30 min 15 min 30e45 min 15 min >45 min 15 min 6. Did you get sufficient time for your appointment? Yes Sufficient No, it was a little too short No No, it was far too short No No, it was too long No 7. Did you get answers to your questions? Completely Completely Partly Insufficient Hardly Insufficient Not at all Insufficient I did not have any questions Excluded 8. Was the information you received during today's appointment at the nurse-led clinic sufficient? Completely Completely Partly No Hardly No Not at all No I did not receive any information Excluded I received too much information Excluded 9. How did you consider the nurse's interpersonal manner? Very good Good Good Good Neither good, nor bad Not good enough Bad Not good enough Very bad Not good enough 10. To what extent were your expectations on your visit at the nurse-led clinic fulfilled? Very high High High High Neither high, nor low Not high enough Low Not high enough Very low Not high enough I did not have any expectations Excluded 11. What did you think of the care at the clinic today? Very good Good Good Good Neither good, nor bad Not good enough Bad Not good enough Very bad Not good enough 12. Would you recommend the nurse-led clinic at the Department of Oncology to a friend in your situation? Never No Probably not No Maybe No Absolutely Yes
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information and higher satisfaction with information. In the analysis of continuity of care and satisfaction with information, the item “Were you satisfied with the amount of information received” the 4-point response scale was dichotomized into “satisfied” (very much) and “less satisfied” (quite a bit, a little and not at all). This was made to distinguish those who were clearly “satisfied” with the information from those who were “less satisfied” as this item did not identify dissatisfaction. Distributional differences for continuous variables were estimated and tested using linear regression models. Differences in categorical data were tested using the chi-square test of independence. Binary categorical outcomes were modelled using unconditional logistic regression. Agreement between patient reported continuity of care and registered continuity of care was evaluated using the kappa statistic. The 95% confidence interval for this statistic was estimated using the bootstrap technique with 1000 replicates. All reported p-values are two-sided. Due to multiple testing the level of statistical significance was set to 0.01 to avoid type I errors. The study was approved by the Regional Ethical Review Board, Stockholm (2006/1501-31, 2012/1927-31/1). Results In Fig. 1, the sources of data, i.e. questionnaires and information from patients' medical records, by year and response rates are presented. The results of patients' satisfaction with nurse-led clinics are based on data from 962 patients (79%) who responded in one of the four surveys, which have been performed regularly every second year, starting in 2007. The fractions of missing values were between 3 and 4%, for responders, on all 12 items. Patients' characteristics Age, gender, diagnostic group and type of visit by year of measurement are presented in Table 2. Over time, the fraction of visits at the nurse-led clinic categorized as a follow-up visit increased from 32% (2007) to 52% (2013) (p < 0.01). In the latest survey, 46% of respondents reported they had been patients at the Department of Oncology for less than one year. A total of 52% of the patients stated they had been assigned a named nurse navigator and 39% responded that their last appointment at the nurse-led clinic was with their named nurse navigator. Responders versus non-responders The age distribution among responders and non-responders differed statistically significant (p < 0.01) with more responders being in the older age groups and more non-responders in the younger age group. There was no difference in the proportion of men and women between responders and non-responders. A statistically significant difference (<0.01) between the diagnostic groups were found with a higher proportion of non-responders among patients with head/neck-, skin-, lung- or brain tumours and a higher proportion of responders with urological tumours. In addition, statistically significant higher proportion of nonresponders was found among those attending the nurse-led clinic for “follow-up” and there were more responders among patients attending the nurse-led clinic for “information” (p < 0.01). Patient satisfaction Waiting time, time for the visit, interpersonal manners, expectations Percentages of patients who responded in the compiled response categories, at the four time points of measurement are
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
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Fig. 1. Sources of data by year and response rates.
Table 2 Age, gender, diagnose group and type of visit for the total sample by year of measurement. Factor*
2007 n ¼ 142
2009 n ¼ 362
2011 n ¼ 421
2013 n ¼ 287
7 38 141 150 25
12 37 157 182 33
5 35 87 139 20
(%) Age 18e29 years 30e44 years 45e64 years 65e79 years 80 years Gender Female Diagnostic group “Breast cancer and Sarcoma” “Gastro-Intestinal tumours” “Gynecological tumours” “Head/Neck-, Skin-, Lung- and Brain tumours” “Urological tumours” Type of visit “Information” “Treatment” “Follow-up” *
5 16 65 52 4
(4) (11) (46) (37) (3)
(2) (11) (39) (42) (7)
(3) (9) (37) (43) (8)
73 (51)
182 (50)
208 (50)
41 23 3 42 33
54 46 28 87 147
83 40 29 129 140
(29) (16) (2) (30) (23)
39 (28) 57 (40) 46 (32)
(15) (13) (8) (24) (41)
139 (38) 124 (34) 99 (27)
(2) (12) (30) (49) (7)
152 (56)
(20) (10) (7) (31) (33)
61 17 31 92 85
89 (21) 111 (27) 219 (52)
(21) (6) (11) (32) (30)
50 (18) 88 (31) 147 (52)
Data are missing for some factors. Missing data are excluded in the calculation of percentages.
Table 3 Patients perception of their visit at the nurse-led clinic, presented as percentages of responding patients in the compiled category, by year of measurement. 2007
2009
2011
2013
Waiting time <15 min Waiting time “Acceptable” Length of appointment <15 min “Sufficient” length of appointment
82 91 46 96
84 95 43 97
84 94 36 96
82 94 45 97
“Good” interpersonal manner by the appointed nurse “Good” care, overall at the clinic “Highly” met expectations on the nurse-led visit “Absolutely” recommend the nurse-led clinic
99 93 87 92
99 98 90 94
97 96 89 95
99 99 92 95
“Completely”, response to questions “Completely”, sufficient information
74 81
78 81
76 74
73 74
“Yes”, met the same nurse “Important” to meet the same nurse
57 89
67 91
65 90
53 93
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7
displayed in Table 3. The completion rates of items in the questionnaire for responders were between 97 and 98%. The presented percentages are based on the response categories in Table 1, nonresponders were excluded. Taken the results from all four surveys together, more than 80% of the patients reported the waiting time to be less than 15 min, over 90% rated their waiting time as “acceptable” and more than 95% of the patients rated the length of time for the visit as “sufficient”. A total of 32 patients left these items uncompleted. Patients rated their nurses' interpersonal manner highly; 84% “very good” and 14% “good”. The fraction that responded “neither good, nor bad” or “bad” was less than 2% and none used the category “very bad”. The proportion of patients who rated the care at the outpatient clinic as “not good enough” decreased from 7% (2007) to 2% (2013), however, not statistically significantly and 32 patients did not complete this item. A high proportion of patients (90%) reported that their expectations on the nurse-led visit was met to a high degree, however, 42 patients reported they did not have any expectations (excluded, see Table 1) and 26 left this item unanswered. A small fraction of patients, 5% (n ¼ 52), expressed doubtfulness regarding whether they would, recommend the nurse-led clinic to a friend; 48 patients responded “maybe” and 4 responded “probably not”. None responded “never” and 43 patients did not respond to this item.
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common reported. The mean scale score for how useful patients considered the information reached 67 on a 0e100 scale. No associations were found between “satisfaction with information” and gender or age, or between “wish for further information” and gender or age. A higher fraction (74%) of “new” patients (<1 year as patient at the Department of Oncology) reported having received written information compared to those who had been patients for >1 year (53%). No other associations were found between received information and time as patient (<1 year vs. >1 year) at the Department of Oncology. Continuity of care and associations of satisfaction with information Overall, the proportion of first time visits at the nurse-led clinic was 27% (n ¼ 251). This response category was excluded when the patient reported continuity of care was calculated. The average patient reported continuity of care at the four points of measurement was 62%. There were no statistically significant changes over time in patient reported continuity of care or in proportion of patients who responded that continuity of care was “very important” (36%) or “quite important” (40%). In Table 3, percentage of responses in the compiled categories, at the four points of measurement is shown. In Fig. 3 “Satisfaction with information” is presented divided by patient reported continuity of care. No statistically significant associations were found between patients reported continuity of care and “satisfaction with information” or between time as patient (<1 year vs. >1 year) at the Department of Oncology and “satisfaction with information”.
Information Summarizing the four surveys, 632 patients (76%) reported they received “complete” answers to their question and 188 patients (23%) responded “partial”. A total of 94 patients stated they did not have any questions (excluded, see Table 1) and 36 patients left this item incomplete. A total of 696 patients (77%) rated the information they received at the nurse-led clinic as “completely” sufficient, 194 patients (21%) as “partly” sufficient. Fifteen patients reported they did not receive any information at the visit and 6 patients responded that they received too much information (excluded, see Table 1). Patients who participated in the surveys during 2011 and 2013 completed the EORTC QLQ-INFO25. The overall response rate to the QLQ-INFO25 questionnaire was 68e72%. Mean scale scores for the information subscales are presented by year in Fig. 2. No statistically significantly differences between the two points of measurements were found. In 2011, 50% of responding patients expressed a wish for further information and the corresponding figure for the 2013 survey was 46%. Out of the 195 patients who completed the EORTC QLQ-INFO25 in the latest survey, 64 patients (33%) responded to the open-ended item on what subjects they wanted more information about. The responses revealed a diversity of wishes for further information with “side effects” being the most
Data on registered continuity of care was retrieved from the patients' medical records for those who responded to the EORTC QLQ-INFO25 questionnaire in 2011, and who had more than one visit at the nurse-led clinic (n ¼ 233). In total, these 233 patients generated 1552 contacts with the nurse-led clinic during one year, including telephone follow-up. A total of 951 contacts (61%) were carried out during a four-month period. By including only the five latest contacts, 60% (n ¼ 925) of the total visits were captured, the corresponding figure by including the 10 latest visits were 82% (n ¼ 1279). Patient reported continuity of care, i.e. reported having met the same nurse as at their previous appointment, in the 2011 survey was 65%. Registered continuity of care was categorized as “good” if the patient was in contact with the same nurse during the two last contacts and this criterion was met by 140 (60%) of the 233 patients
Fig. 2. Mean scale scores for the information subscales by year of measurement.
Fig. 3. Responses to the item “Were you satisfied with the amount of information you received?” by continuity of care (patient reported).
Agreements between patient reported and registered continuity of care
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
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C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7
with more than one registered contact. When calculating the agreement between patient reported continuity of care and registered continuity of care, telephone contacts were excluded. This was done in order to make the registered data comparable to the item in the questionnaire “Did you meet the same nurse as you did at your previous appointment?”. A total of 182 patients from the 2011 survey were included in the analyses resulting in patient reported continuity of care of 68% (n ¼ 124) and registered continuity of care of 60% (n ¼ 110). The overall agreement between patient reported continuity of care and registered continuity of care was 0.79 with the corresponding kappa statistics 0.55 (CI: 0.42e0.67). Discussion The findings in the present study are based on the responses from four consecutive samples of patients at nurse-led clinics who completed questionnaires on satisfaction shortly after their visit. Patients' perceptions of the nurse-led clinic were stable over time. Of the 962 responding patients, more than 90% rated their waiting time as “acceptable”, the length of the appointment as “sufficient”, their nurse's interpersonal manners and the care at the clinic as “good”. Reported deficiencies concerned information and continuity of care. The items assessing information at the nurse-led clinic revealed that almost a quarter of the patients reported insufficiencies regarding the information received and responses to their questions. In addition, about half of the patients wanted more information “during the current disease or treatment period”. No statistically significant associations were found between continuity of care and satisfaction with information. In addition, a moderate agreement between patient reported and registered continuity of care was found. The reported amount of information was over 60 on a 0e100 scale for “treatments” and “written information”; below 60 for “the disease” and “medical tests”; and below 40 for “self care strategies”, “other services” and “different places of care” with comparable figures in other studies (Arraras et al., 2010; Bergenmar et al., 2014; Majumder et al., 2014). Even though the optimal amount of information is unknown there is undoubtedly room for improvements regarding information. A mean scale score for “satisfaction with information” below 70 and the fact that half of the patients, wanted more information strengthen this assumption. However, information needs are individual and changes over time, making it necessary to increase information exchange and decrease information transfer (Lee and Garvin, 2003; Zucca et al., 2014). Despite that “side effects” was the single most common information request among the small fraction of patients who wrote on what they wanted more information about, the wide variety of information wishes underlines the need to take on a more person-centred approach to information. No associations were found between “satisfaction with information” and “wish for further information” on the one hand, and gender or age on the other hand. These results are partly consistent and partly conflicting with other studies in which EORTC QLQINFO25 have been used. In a large international study, men were found to be more satisfied with information received (Arraras et al., 2010). Age was associated with satisfaction in a study on women who had completed curative radiotherapy for breast cancer, with younger women being less satisfied with information received (Bergenmar et al., 2014). In a study on patients who had undergone curative radiotherapy for prostate cancer, no associations between age and satisfaction with information was found (Majumder et al., 2014). Wish for more information was associated with younger age and female gender (Arraras et al., 2010). However, despite the same instrument being used, these studies represent different samples with regard to setting (in- and outpatient and single site
vs. multi-center), point of measurement, diagnosis and gender that might contribute to explaining similarities and differences. Patients' reports on the importance of being able to meet the same nurse at the appointments at the nurse-led clinic remained high and stable over the four measurements, indicating the significance of continuity of care. The fraction of patients who reported having met the same nurse as at their previous appointment ranged from 53% to 67%. Following the results from the first assessment in 2007 with a patient reported continuity of care of 57%, targeted efforts to increase continuity of care at the nurse-led clinics were carried out. At the second assessment (2009), patient reported continuity of care had increased to 67%. However, at the latest assessment (2013), patient reported continuity of care was 53%. These figures are similar to patient reported continuity of care at physician-led clinics (Bergenmar et al., 2006). The patient reported continuity of care represents patients' perception of having met the same person as at their previous appointment. Interestingly, the registered continuity of care was lower, despite including booked and completed telephone follow-up and the agreement between patient reported and registered continuity of care was moderate. The assumption of increased opportunities for information exchange and thereby higher levels of satisfaction with information among patients who reported continuity of care failed to be true. Still, considering the variety of health care providers of different professions cancer patients meet during their disease trajectory, it could be beneficial and worth striving for to minimize the number of persons involved (Barnet and Shaw, 2013). However, the concept continuity of care is complex, constituted by three different but closely related types of continuity of care: informational continuity of care, relational continuity of care and management continuity of care (Reid et al., 2002). Reid et al. (2002) conclude “continuity of care is the products of stable providerepatient relationship, the use of relevant information on previous care, and an application of consistent strategies to manage health problems”. Patients' experiences of continuity of care, as an outcome of care, rather than something provided was suggested by King et al. (2008), and associations between experienced continuity of care and health information needs were found. Yet, despite that improved patienteprovider communication resulted in higher experienced continuity of care this did not influence patients' strong preference to see their regular physician (Velikova et al., 2010). In the present study, only about half of the patients reported they had a named nurse navigator. The responsibilities for nurse navigators include most components identified to be of importance for patients' experience of continuity of care (Swedish Government Official Reports SOU, 2009:11). To what extent these responsibilities are fulfilled is to our knowledge unknown. Nurse navigators have key positions in cancer care (Case, 2011), and an increase of patients assigned and aware of having a named nurse navigator should be an improvement in experienced continuity of care. Whether this also will translate into minimizing the number of individuals the patients meet remains to be seen. The strengths of this study include the consecutive samples, the quite high response rates, use of a validated instrument, consistency in the procedure of measurement and the combination of patient reported data and registered data. Weaknesses of this study primarily concern the statistically significant lower response rate among younger patients and patients with head/neck-, skin-, lungor brain tumours. This is consistent with results from Nguyen et al. (2014) who showed that patients with lung or head and neck cancers were more likely to be non-responders to follow-up assessments in their study. They also found that patients with head and neck cancer were the least satisfied with the information provided and speculated whether this was related to treatment and
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7
side effects in this diagnostic group (Nguyen et al., 2014). Younger age has been associated with having received more information and wish for more information (Arraras et al., 2010; Husson et al., 2013). Regarding satisfaction with information the data is conflicting, with higher satisfaction among younger patients in a large population based study that included both genders and lower satisfaction among the younger women in a study of women with breast cancer (Bergenmar et al., 2014). However, the reasons for declining participation in this study are unknown, but the results must be interpreted cautiously for younger patients and patients with head/neck-, skin-, lung- or brain tumours. One of the natural limitations of questionnaire surveys are that no assumptions of patients' reasoning regarding e.g. information and continuity of care can be made. The design of the present study precludes any causal relationships but despite the overall high levels of satisfaction, suggestions for improvements include renewed efforts to minimize the number of health care professionals patients meet and an increased awareness of the importance of information exchange. Conclusions and implications for oncology nursing practice In conclusion, patients' satisfaction with nurse-led clinics was stable over time with generally high figures with the exception for continuity of care and information. About half of the patients wished for more information and patients' “satisfaction with information” were below 70, on a 0e100 scale, reflecting room for improvement regarding information. No statistically significant associations were found between “satisfaction with information” and patient reported continuity of care. Improvements in the assignment of, and patients' awareness of a named nurse navigator are warranted. A more person-centred approach, e.g. increase of information exchange, is needed in order to meet the wide variety of patients' information needs and preferences. Conflicts of interest None declared. Acknowledgements We thank Karolinska University Hospital, Department of Oncology for support and research time. References Arraras, J.I., Greimel, E., Sezer, O., Chie, W.-C., Bergenmar, M., Constantini, A., et al., 2010. An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients. European Journal of Cancer 46, 2726e2738. Barnet, M., Shaw, T., 2013. What do consumers see as important in the continuity of their care? Supportive Care Cancer 21, 2637e2642. n, U., Lidbrink, E., Bergh, J., Brandberg, Y., 2006. Improvements Bergenmar, M., Nyle in patient satisfaction at an outpatient clinic for patients with breast cancer. Acta Oncologica 45, 550e558. Bergenmar, M., Johansson, H., Sharp, L., 2014. Patients' perception of information after completion of adjuvant radiotherapy for breast cancer. European Journal of Oncology Nursing 18, 305e309. Borras, J.M., Sanchez-Hernandez, A., Navarro, M., Martinez, M., Mendez, E., Ponton, J.L., et al., 2001. Compliance, satisfaction, and quality of life of patients with colorectal cancer receiving home chemotherapy or outpatient treatment: a randomised controlled trial. British Medical Journal 322 (7290), 826.
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dart, A., 2001. Assessment of Satisfaction with Cancer Care: Development, CrossBre cultural Psychometric Analysis and Application of a Comprehensive Instrument. Faculty of Medicine, Thesis. University of Amsterdam, Amsterdam. dart, A., Sultan, S., Regnault, A., 2010. Patient satisfaction instruments for cancer Bre clinical research or practice. Expert Reviews Pharmacoeconomics Outcomes Research 10, 129e141. dart, A., Kop, J.-L., Efficare, F., Beadeau, A., Brito, T., Dolbeault, S., et al., 2015. Bre Quality of care in the oncology outpatient setting from patients' perspective: a systematic review of questionnaires' content and psychometric performance. Psycho-Oncology 24, 382e394. Caprici, C., Feldman-Stewart, D., Mandoliti, G., Brundage, M., Belluco, G., Magnani, K., 2005. Information priorities of Italian early-stage prostate cancer patients and of their health-care professionals. Patient Education and Counseling 56, 174e181. Case, M.A., 2011. Oncology nurse navigator. Clinical Journal of Oncology Nursing 15, 33e40. Cusack, M., Taylor, C., 2010. A literature review of the potential of telephone followup in colorectal cancer. Journal of Clinical Nursing 19, 2394e2405. Cox, A., Jenkins, V., Catt, S., Langridge, C., Fallowfield, L., 2006. Information needs and experiences: an audit of UK cancer patients. European Journal of Oncology Nursing 10 (4), 263e272. Davies, N.J., Kinman, G., Thomas, R.J., Bailey, T., 2008. Information satisfaction in breast and prostate cancer patients: implications for quality of life. PsychoOncology 17, 1048e1052. Fayers, P., Aaronson, N.K., Bjordal, K., Groenvold, M., Curran, D., Bottomley, A., 2002. EORTC QLQ-C30. Scoring Manual, third ed. EORTC, Brussels. Gupta, D., Lis, C.G., Rodeghier, M., 2013. Can patient experience with service quality predict survival in colorectal cancer? Journal of Healthcare Quality 35, 37e43. Gustafsson, E., 2008. Patients' Satisfaction with Nurse Led Care in Oncology Outpatient Clinics (Master's thesis). Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Stockholm. Harrison, J.D., Young, J.M., Price, M.A., Butow, P.N., Solomon, M.J., 2009. What are the unmet supportive care needs of people with cancer? A systematic review. Supportive Care Cancer 17, 1117e1128. Husson, O., Mols, F., van der Poll-Franse, L., 2011. The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Annals of Oncology 22, 761e772. Husson, O., Thong, M.S.Y., Mols, F., Oerlemans, S., Kaptein, A.A., van der PollFranse, L., 2013. Illness perceptions in cancer survivors: what is the role of information provision? Psycho-Oncology 22, 490e498. King, M., Jones, L., Richardson, A., Murad, S., Irving, A., Aslett, H., et al., 2008. The relationship between patients' experiences of continuity of cancer care and health outcomes: a mixed method study. British Journal of Cancer 98, 529e536. Lee, R.G., Garvin, T., 2003. Moving from information transfer to information exchange in health and health care. Social Sciences and Medicine 56, 449e464. Lewis, R., Neal, R.D., Williams, N.H., France, B., Wilkinson, C., Hendry, M., et al., 2009. Nurse-led vs. conventional physician-led follow-up for patients with cancer: a systematic review. Journal of Advanced Nursing 65, 706e723. Majumder, K., Brandberg, Y., Johansson, H., Nilsson, S., Bergenmar, M., 2014. Less satisfaction with information in patients with prostate cancer treated with surgery and salvage radiotherapy compared with patients treated with curative radiotherapy alone, despite similar health-related quality of life. Clinical Genitourinary Cancer 3, e71ee82. dart, A., Monnier, A., Bosset, J.-F., Mercier, M., 2014. Nguyen, T.V., Anota, A., Bre A longitudinal analysis of patient satisfaction with care and quality of life in ambulatory oncology based on the OUT-PATSAT35 questionnaire. BioMed Central Cancer 14, 42. Reid, R., Haggerty, J., McKendry, R., 2002. Defusing the Confusion: Concepts and Measures of Continuity of Healthcare. Final report. Canadian Health Service Research Foundation, Ottawa. Sitzia, J., Wood, N., 1997. Patient satisfaction: a review of issues and concepts. Social Sciences and Medicine 45, 1829e1843. Swedish Government Official Reports SOU, 2009:11. A National Cancer Strategy for the Future. www.regeringen.se/social/cancerstrategi. €, T., Mattila, E., Kaila, M., Aalto, P., Kaunonen, M., 2008. Measuring patient S€ aila assessment of the quality of outpatient care: a systematic review. Journal of Evaluation in Clinical Practice 14, 148e154. Velikova, G., Keding, A., Harley, C., Cocks, K., Booth, L., Smith, A.B., et al., 2010. Patients report improvement in continuity of care when quality of life assessment are used routinely in oncology practice: secondary outcomes of a randomised controlled trial. European Journal of Cancer 46, 2381e2388. Ware, E.J., Snyder, M.K., Wright, W.R., Davies, A.R., 1983. Defining and measuring patient satisfaction with medical care. Evaluation and Programme Planning 6, 247e263. Williams, B., 1994. Patient satisfaction: a valid concept? Social Sciences and Medicine 38, 509e516. Zucca, A., Sanson-Fisher, R., Waller, A., Carey, M., 2014. Patient-centred care: making cancer treatment centres accountable. Supportive Care Cancer 22, 1989e1997.
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Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care Catharina Bau Berglund a, Eva Gustafsson a, Hemming Johansson a, b, Mia Bergenmar a, b, * a b
Department of Oncology, Karolinska University Hospital, SE-171 76 Stockholm, Sweden Department of Oncology-Pathology, Karolinska Institutet, Karolinska University Hospital, SE-171 78 Stockholm, Sweden
a r t i c l e i n f o
a b s t r a c t
Article history: Received 24 August 2014 Received in revised form 8 January 2015 Accepted 11 May 2015
Purpose: The aims of the present study were to investigate patients' satisfaction with nurse-led clinics, patients' perception of received information and associations between continuity of care and satisfaction with information. Methods: Questionnaires on patient satisfaction were sent to consecutive samples of patients after they attended a nurse-led clinic at the Department of Oncology, Karolinska University Hospital in 2007, 2009, 2011 and 2013. Patients' perceptions of received information were evaluated in 2011 and 2013, by the EORTC QLQ-INFO25. Data on registered continuity of care were retrieved from the patients' medical record. Results: A total of 962 patients responded (79%) to one of the four surveys. Patients' satisfaction with nurse-led clinics was stable over time. More than 90% rated nurses' interpersonal manners and the care at the clinic as “good”, the waiting time as “acceptable”, and the length of appointments as “sufficient”. Over 90% responded that it was important to meet the same nurse and 62% reported they actually did so and 52% stated they were assigned a named nurse navigator. More than 75% rated the information at their latest visit at a nurse-led clinic as “completely” sufficient. However, 48% expressed wish for more information “during the current disease”. No statistical significant associations were found between “satisfaction with information” and continuity of care. Conclusions: Patients' satisfaction with nurse-led clinics was stable over time with generally high figures with the exception for continuity of care and information, areas in which improvements are needed. The wide variety in information needs might require a person-centred approach. © 2015 Elsevier Ltd. All rights reserved.
Keywords: Nurse-led clinics Oncology care Patient satisfaction Patient information EORTC QLQ-INFO25 Continuity of care Questionnaire
Introduction Patients' experiences are considered valuable indicators in the evaluation of the quality of care and important end points in quality dart et al., 2010). Patient satisassessment at many hospitals (Bre faction has been defined as the patient's evaluation of the care, including both actual experiences and the patient's characteristics dart, 2001). Although much empirical work has been per(Bre formed, there are gaps in the theoretical underpinning regarding the concept patient satisfaction (Sitzia and Wood, 1997; Ware et al., 1983; Williams, 1994). Nevertheless, positive associations have been reported between high levels of patient satisfaction with care,
* Corresponding author. Department of Oncology, Karolinska University Hospital, SE-171 76 Stockholm, Sweden. E-mail addresses: [email protected] (C.B. Berglund), eva.g. [email protected] (E. Gustafsson), [email protected] (H. Johansson), [email protected] (M. Bergenmar).
adherence to treatment and health outcomes (Borras et al., 2001; Gupta et al., 2013). Communication/information and continuity of care have been identified as important factors for patient dissatisfaction in addition to waiting time, duration of consultations, availability and €ila € et al., 2008). Questionnaires being used for accessibility (Sa measuring patient satisfaction within oncology outpatient settings commonly include items comprising of education, the possibility of making choices and continuity of care, reflecting their importance dart et al., 2014). Despite the usually high levels of patient (Bre satisfaction with care, patients often report deficiencies in patient information. Having access to correct, comprehensible information is a prerequisite for making informed decisions. Additionally, adequately informed patients report lower levels of anxiety and better quality of life (Cox et al., 2006; Davies et al., 2008; Husson et al., 2011). Meeting patients' information needs have been described as a core component in cancer care (Harrison et al., 2009). Yet, it has been shown that health care providers usually
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Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
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underestimate patients information needs (Caprici et al., 2005). Positive associations between reduced health information needs and experienced continuity of care have been reported among cancer patients (King et al., 2008). Improvement of the continuity of care was one of the main requests from outpatients with cancer (Bergenmar et al., 2006). Continuity of care has been defined in several ways but usually with insufficient conceptual clarity. Consequently, continuity of care has been measured in many different ways (Reid et al., 2002). However, the following prerequisites need to be met in order to fulfil the lowest common denominator; care have been provided over time and received and experienced by an individual patient (Reid et al., 2002). During cancer treatment, actions should be taken to increase the consistency of staff and information (Barnet and Shaw, 2013). In the “National cancer strategy for the future”, it was formulated that every cancer patient should be assigned a named nurse navigator who is responsible for keeping the patient informed and ensure the patient's involvement and influence in their care (Swedish Government Official Reports SOU, 2009:11). During the last decades, there has been a considerable shift from inpatient admissions to outpatient visits within cancer care. In addition, the rapid development of treatments within oncology continuously requires new care interventions to meet patients' needs and to ensure their safety. Different strategies have been tested in order to meet patients' needs, e.g. follow-up by telephone and at nurse-led clinics (Cusack and Taylor, 2010; Lewis et al., 2009). At the Department of Oncology, Karolinska University Hospital, Solna, nurse-led clinics currently account for about 15% of outpatient care episodes, excluding radiotherapy and ambulatory chemotherapy. Nurse-led clinics are embedded in the clinical pathway for patients during their course of treatment at the Department of Oncology and patients attending the nurse-led clinics are undergoing curative, adjuvant or palliative treatments. Nurses perform symptom controls, controls of side effects and skin examinations; they administer treatment; they inform, support and educate patients and families before and during oncological treatment. Surveys to show patients' perception of nurse-led clinics have been performed every two years since 2007 in order to evaluate how patients' needs are met in terms of satisfaction, information and continuity of care (Sitzia and Wood, 1997). The main objectives of this study were to investigate: Patients' satisfaction with nurse-led clinics over time Patients' perception of received information Associations between continuity of care and satisfaction with information The agreement between patient reported and registered continuity of care
the fourth during two weeks in 2013 (n ¼ 287). During the two most recent surveys, patients were asked also to complete the questionnaire EORTC QLQ-INFO25, as described below. Registered continuity of care, i.e. date and nurse, was retrieved from the electronic medical files of patients who completed the EORTC QLQINFO25 in the 2011 survey. Instruments The questionnaire measuring patients' satisfaction was originally developed for the patientephysician outpatient encounter. It proved to capture changes in patient satisfaction over time (Bergenmar et al., 2006). The questionnaire has since been adapted to the patient-nurse outpatient encounter (Gustafsson, 2008). It consists of 12 multiple-choice items, including items concerning waiting time, continuity of care, length of visit, information, interpersonal manner and fulfilment of expectations (Table 1). The patients were asked to respond to the questionnaire, keeping their last visit at the nurse-led clinic in mind. Two questions about nurse navigator and time as patient at the Department of Oncology were added to the 2013 survey. The questionnaire measuring patients' perception of received information was developed within the European Organization for Research and Treatment of Cancer's Quality of Life Group. The questionnaire EORTC QLQ-INFO25 consists of 25-items about the information received about the disease (4 items), medical tests (3 items), treatment (6 items) and other services (4 items), and 8 single items (different places of care, self care strategies, written information, information on CD or tape/video, satisfaction with received information, wish for more or less information and if the information overall had been helpful). Response format is a fourpoint scale from 1 (“Not at all”) to 4 (“Very much”). Four items have response format “Yes” or “No”. The EORTC QLQ-INFO25 is a validated module suitable for clinical practice and research (Arraras et al., 2010). The time frame is “during the current disease or treatment period”. Patient reported and registered continuity of care Patients responding that they had met the same nurse as at their previous appointment, see Table 1, question 3, fulfilled our definition of patient reported continuity of care. Patients' registered continuity of care was measured by controlling each patient's electronic file regarding completed contacts with nurses one year back in time from the date of the visit the patients evaluated in the patient satisfaction questionnaire. In addition, the type of contact was registered (i.e. visit or telephone) and which specific nurse the patient been in contact with.
Methods
Statistical methods and considerations
Patients, measurement points and procedures
Responses to the patients' satisfaction questionnaires were categorized as shown in Table 1. Responses to question 3 (see Table 1) were used to determine patient reported continuity of care, by firstly excluding any new patients and then calculating the fraction of patients who responded “yes”. Registered continuity of care was defined as “good” if patients had registered contact with the same nurse at the last two follow-up appointments in their medical records. In the analysis, comparing patient reported continuity of care with registered continuity of care, telephone contacts were excluded. Responses to the items included in the EORTC QLQ-INFO25 were linearly transformed to scales, ranging from 0 to 100, according to the EORTC manual (Fayers et al., 2002). Higher scores, represent having received more information, wishes for more
Surveys of patients' perception of nurse-led outpatient care were performed at the Department of Oncology, Karolinska University Hospital, Solna in 2007, 2009, 2011 and 2013. An information letter, questionnaire and a pre-paid envelope were sent to all patients who had attended the nurse-led clinics shortly after their visit. The letter informed patients about confidentiality and that it was voluntary to respond. One reminder was sent to those not responding within two weeks. Patients who did not want to participate were advised to return the questionnaire uncompleted in order to avoid a reminder. The first survey was carried out during three weeks in 2007 (n ¼ 142), the second during four weeks in 2009 (n ¼ 362), the third during three weeks in 2011 (n ¼ 421) and
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7 Table 1 Items, response categories and grouping of response categories measuring patients' perception of their visit at the nurse-led clinic. Item
Response categories
Compiled categories
1. For how long after your appointed time did you have to wait to meet your nurse? <15 min <15 min 15e30 min 15 min 30e45 min 15 min 45e60 min 15 min >60 min 15 min 2. How did you consider your waiting time? Far too long Too long Too long Too long Acceptable Acceptable I did not have to wait Acceptable 3. Did you meet the same nurse as you did at your previous appointment? This is the first visit Excluded Yes Yes No No 4. How important is it to you, to meet the same nurse at every visit at the nurse-led clinic? Not important at all Not important at all Of some importance Important Quite important Important Very important Important 5. For how long did you meet the nurse at the nurse-led clinic? <5 min <15 min 5e15 min <15 min 15e30 min 15 min 30e45 min 15 min >45 min 15 min 6. Did you get sufficient time for your appointment? Yes Sufficient No, it was a little too short No No, it was far too short No No, it was too long No 7. Did you get answers to your questions? Completely Completely Partly Insufficient Hardly Insufficient Not at all Insufficient I did not have any questions Excluded 8. Was the information you received during today's appointment at the nurse-led clinic sufficient? Completely Completely Partly No Hardly No Not at all No I did not receive any information Excluded I received too much information Excluded 9. How did you consider the nurse's interpersonal manner? Very good Good Good Good Neither good, nor bad Not good enough Bad Not good enough Very bad Not good enough 10. To what extent were your expectations on your visit at the nurse-led clinic fulfilled? Very high High High High Neither high, nor low Not high enough Low Not high enough Very low Not high enough I did not have any expectations Excluded 11. What did you think of the care at the clinic today? Very good Good Good Good Neither good, nor bad Not good enough Bad Not good enough Very bad Not good enough 12. Would you recommend the nurse-led clinic at the Department of Oncology to a friend in your situation? Never No Probably not No Maybe No Absolutely Yes
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information and higher satisfaction with information. In the analysis of continuity of care and satisfaction with information, the item “Were you satisfied with the amount of information received” the 4-point response scale was dichotomized into “satisfied” (very much) and “less satisfied” (quite a bit, a little and not at all). This was made to distinguish those who were clearly “satisfied” with the information from those who were “less satisfied” as this item did not identify dissatisfaction. Distributional differences for continuous variables were estimated and tested using linear regression models. Differences in categorical data were tested using the chi-square test of independence. Binary categorical outcomes were modelled using unconditional logistic regression. Agreement between patient reported continuity of care and registered continuity of care was evaluated using the kappa statistic. The 95% confidence interval for this statistic was estimated using the bootstrap technique with 1000 replicates. All reported p-values are two-sided. Due to multiple testing the level of statistical significance was set to 0.01 to avoid type I errors. The study was approved by the Regional Ethical Review Board, Stockholm (2006/1501-31, 2012/1927-31/1). Results In Fig. 1, the sources of data, i.e. questionnaires and information from patients' medical records, by year and response rates are presented. The results of patients' satisfaction with nurse-led clinics are based on data from 962 patients (79%) who responded in one of the four surveys, which have been performed regularly every second year, starting in 2007. The fractions of missing values were between 3 and 4%, for responders, on all 12 items. Patients' characteristics Age, gender, diagnostic group and type of visit by year of measurement are presented in Table 2. Over time, the fraction of visits at the nurse-led clinic categorized as a follow-up visit increased from 32% (2007) to 52% (2013) (p < 0.01). In the latest survey, 46% of respondents reported they had been patients at the Department of Oncology for less than one year. A total of 52% of the patients stated they had been assigned a named nurse navigator and 39% responded that their last appointment at the nurse-led clinic was with their named nurse navigator. Responders versus non-responders The age distribution among responders and non-responders differed statistically significant (p < 0.01) with more responders being in the older age groups and more non-responders in the younger age group. There was no difference in the proportion of men and women between responders and non-responders. A statistically significant difference (<0.01) between the diagnostic groups were found with a higher proportion of non-responders among patients with head/neck-, skin-, lung- or brain tumours and a higher proportion of responders with urological tumours. In addition, statistically significant higher proportion of nonresponders was found among those attending the nurse-led clinic for “follow-up” and there were more responders among patients attending the nurse-led clinic for “information” (p < 0.01). Patient satisfaction Waiting time, time for the visit, interpersonal manners, expectations Percentages of patients who responded in the compiled response categories, at the four time points of measurement are
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
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Fig. 1. Sources of data by year and response rates.
Table 2 Age, gender, diagnose group and type of visit for the total sample by year of measurement. Factor*
2007 n ¼ 142
2009 n ¼ 362
2011 n ¼ 421
2013 n ¼ 287
7 38 141 150 25
12 37 157 182 33
5 35 87 139 20
(%) Age 18e29 years 30e44 years 45e64 years 65e79 years 80 years Gender Female Diagnostic group “Breast cancer and Sarcoma” “Gastro-Intestinal tumours” “Gynecological tumours” “Head/Neck-, Skin-, Lung- and Brain tumours” “Urological tumours” Type of visit “Information” “Treatment” “Follow-up” *
5 16 65 52 4
(4) (11) (46) (37) (3)
(2) (11) (39) (42) (7)
(3) (9) (37) (43) (8)
73 (51)
182 (50)
208 (50)
41 23 3 42 33
54 46 28 87 147
83 40 29 129 140
(29) (16) (2) (30) (23)
39 (28) 57 (40) 46 (32)
(15) (13) (8) (24) (41)
139 (38) 124 (34) 99 (27)
(2) (12) (30) (49) (7)
152 (56)
(20) (10) (7) (31) (33)
61 17 31 92 85
89 (21) 111 (27) 219 (52)
(21) (6) (11) (32) (30)
50 (18) 88 (31) 147 (52)
Data are missing for some factors. Missing data are excluded in the calculation of percentages.
Table 3 Patients perception of their visit at the nurse-led clinic, presented as percentages of responding patients in the compiled category, by year of measurement. 2007
2009
2011
2013
Waiting time <15 min Waiting time “Acceptable” Length of appointment <15 min “Sufficient” length of appointment
82 91 46 96
84 95 43 97
84 94 36 96
82 94 45 97
“Good” interpersonal manner by the appointed nurse “Good” care, overall at the clinic “Highly” met expectations on the nurse-led visit “Absolutely” recommend the nurse-led clinic
99 93 87 92
99 98 90 94
97 96 89 95
99 99 92 95
“Completely”, response to questions “Completely”, sufficient information
74 81
78 81
76 74
73 74
“Yes”, met the same nurse “Important” to meet the same nurse
57 89
67 91
65 90
53 93
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C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7
displayed in Table 3. The completion rates of items in the questionnaire for responders were between 97 and 98%. The presented percentages are based on the response categories in Table 1, nonresponders were excluded. Taken the results from all four surveys together, more than 80% of the patients reported the waiting time to be less than 15 min, over 90% rated their waiting time as “acceptable” and more than 95% of the patients rated the length of time for the visit as “sufficient”. A total of 32 patients left these items uncompleted. Patients rated their nurses' interpersonal manner highly; 84% “very good” and 14% “good”. The fraction that responded “neither good, nor bad” or “bad” was less than 2% and none used the category “very bad”. The proportion of patients who rated the care at the outpatient clinic as “not good enough” decreased from 7% (2007) to 2% (2013), however, not statistically significantly and 32 patients did not complete this item. A high proportion of patients (90%) reported that their expectations on the nurse-led visit was met to a high degree, however, 42 patients reported they did not have any expectations (excluded, see Table 1) and 26 left this item unanswered. A small fraction of patients, 5% (n ¼ 52), expressed doubtfulness regarding whether they would, recommend the nurse-led clinic to a friend; 48 patients responded “maybe” and 4 responded “probably not”. None responded “never” and 43 patients did not respond to this item.
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common reported. The mean scale score for how useful patients considered the information reached 67 on a 0e100 scale. No associations were found between “satisfaction with information” and gender or age, or between “wish for further information” and gender or age. A higher fraction (74%) of “new” patients (<1 year as patient at the Department of Oncology) reported having received written information compared to those who had been patients for >1 year (53%). No other associations were found between received information and time as patient (<1 year vs. >1 year) at the Department of Oncology. Continuity of care and associations of satisfaction with information Overall, the proportion of first time visits at the nurse-led clinic was 27% (n ¼ 251). This response category was excluded when the patient reported continuity of care was calculated. The average patient reported continuity of care at the four points of measurement was 62%. There were no statistically significant changes over time in patient reported continuity of care or in proportion of patients who responded that continuity of care was “very important” (36%) or “quite important” (40%). In Table 3, percentage of responses in the compiled categories, at the four points of measurement is shown. In Fig. 3 “Satisfaction with information” is presented divided by patient reported continuity of care. No statistically significant associations were found between patients reported continuity of care and “satisfaction with information” or between time as patient (<1 year vs. >1 year) at the Department of Oncology and “satisfaction with information”.
Information Summarizing the four surveys, 632 patients (76%) reported they received “complete” answers to their question and 188 patients (23%) responded “partial”. A total of 94 patients stated they did not have any questions (excluded, see Table 1) and 36 patients left this item incomplete. A total of 696 patients (77%) rated the information they received at the nurse-led clinic as “completely” sufficient, 194 patients (21%) as “partly” sufficient. Fifteen patients reported they did not receive any information at the visit and 6 patients responded that they received too much information (excluded, see Table 1). Patients who participated in the surveys during 2011 and 2013 completed the EORTC QLQ-INFO25. The overall response rate to the QLQ-INFO25 questionnaire was 68e72%. Mean scale scores for the information subscales are presented by year in Fig. 2. No statistically significantly differences between the two points of measurements were found. In 2011, 50% of responding patients expressed a wish for further information and the corresponding figure for the 2013 survey was 46%. Out of the 195 patients who completed the EORTC QLQ-INFO25 in the latest survey, 64 patients (33%) responded to the open-ended item on what subjects they wanted more information about. The responses revealed a diversity of wishes for further information with “side effects” being the most
Data on registered continuity of care was retrieved from the patients' medical records for those who responded to the EORTC QLQ-INFO25 questionnaire in 2011, and who had more than one visit at the nurse-led clinic (n ¼ 233). In total, these 233 patients generated 1552 contacts with the nurse-led clinic during one year, including telephone follow-up. A total of 951 contacts (61%) were carried out during a four-month period. By including only the five latest contacts, 60% (n ¼ 925) of the total visits were captured, the corresponding figure by including the 10 latest visits were 82% (n ¼ 1279). Patient reported continuity of care, i.e. reported having met the same nurse as at their previous appointment, in the 2011 survey was 65%. Registered continuity of care was categorized as “good” if the patient was in contact with the same nurse during the two last contacts and this criterion was met by 140 (60%) of the 233 patients
Fig. 2. Mean scale scores for the information subscales by year of measurement.
Fig. 3. Responses to the item “Were you satisfied with the amount of information you received?” by continuity of care (patient reported).
Agreements between patient reported and registered continuity of care
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
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with more than one registered contact. When calculating the agreement between patient reported continuity of care and registered continuity of care, telephone contacts were excluded. This was done in order to make the registered data comparable to the item in the questionnaire “Did you meet the same nurse as you did at your previous appointment?”. A total of 182 patients from the 2011 survey were included in the analyses resulting in patient reported continuity of care of 68% (n ¼ 124) and registered continuity of care of 60% (n ¼ 110). The overall agreement between patient reported continuity of care and registered continuity of care was 0.79 with the corresponding kappa statistics 0.55 (CI: 0.42e0.67). Discussion The findings in the present study are based on the responses from four consecutive samples of patients at nurse-led clinics who completed questionnaires on satisfaction shortly after their visit. Patients' perceptions of the nurse-led clinic were stable over time. Of the 962 responding patients, more than 90% rated their waiting time as “acceptable”, the length of the appointment as “sufficient”, their nurse's interpersonal manners and the care at the clinic as “good”. Reported deficiencies concerned information and continuity of care. The items assessing information at the nurse-led clinic revealed that almost a quarter of the patients reported insufficiencies regarding the information received and responses to their questions. In addition, about half of the patients wanted more information “during the current disease or treatment period”. No statistically significant associations were found between continuity of care and satisfaction with information. In addition, a moderate agreement between patient reported and registered continuity of care was found. The reported amount of information was over 60 on a 0e100 scale for “treatments” and “written information”; below 60 for “the disease” and “medical tests”; and below 40 for “self care strategies”, “other services” and “different places of care” with comparable figures in other studies (Arraras et al., 2010; Bergenmar et al., 2014; Majumder et al., 2014). Even though the optimal amount of information is unknown there is undoubtedly room for improvements regarding information. A mean scale score for “satisfaction with information” below 70 and the fact that half of the patients, wanted more information strengthen this assumption. However, information needs are individual and changes over time, making it necessary to increase information exchange and decrease information transfer (Lee and Garvin, 2003; Zucca et al., 2014). Despite that “side effects” was the single most common information request among the small fraction of patients who wrote on what they wanted more information about, the wide variety of information wishes underlines the need to take on a more person-centred approach to information. No associations were found between “satisfaction with information” and “wish for further information” on the one hand, and gender or age on the other hand. These results are partly consistent and partly conflicting with other studies in which EORTC QLQINFO25 have been used. In a large international study, men were found to be more satisfied with information received (Arraras et al., 2010). Age was associated with satisfaction in a study on women who had completed curative radiotherapy for breast cancer, with younger women being less satisfied with information received (Bergenmar et al., 2014). In a study on patients who had undergone curative radiotherapy for prostate cancer, no associations between age and satisfaction with information was found (Majumder et al., 2014). Wish for more information was associated with younger age and female gender (Arraras et al., 2010). However, despite the same instrument being used, these studies represent different samples with regard to setting (in- and outpatient and single site
vs. multi-center), point of measurement, diagnosis and gender that might contribute to explaining similarities and differences. Patients' reports on the importance of being able to meet the same nurse at the appointments at the nurse-led clinic remained high and stable over the four measurements, indicating the significance of continuity of care. The fraction of patients who reported having met the same nurse as at their previous appointment ranged from 53% to 67%. Following the results from the first assessment in 2007 with a patient reported continuity of care of 57%, targeted efforts to increase continuity of care at the nurse-led clinics were carried out. At the second assessment (2009), patient reported continuity of care had increased to 67%. However, at the latest assessment (2013), patient reported continuity of care was 53%. These figures are similar to patient reported continuity of care at physician-led clinics (Bergenmar et al., 2006). The patient reported continuity of care represents patients' perception of having met the same person as at their previous appointment. Interestingly, the registered continuity of care was lower, despite including booked and completed telephone follow-up and the agreement between patient reported and registered continuity of care was moderate. The assumption of increased opportunities for information exchange and thereby higher levels of satisfaction with information among patients who reported continuity of care failed to be true. Still, considering the variety of health care providers of different professions cancer patients meet during their disease trajectory, it could be beneficial and worth striving for to minimize the number of persons involved (Barnet and Shaw, 2013). However, the concept continuity of care is complex, constituted by three different but closely related types of continuity of care: informational continuity of care, relational continuity of care and management continuity of care (Reid et al., 2002). Reid et al. (2002) conclude “continuity of care is the products of stable providerepatient relationship, the use of relevant information on previous care, and an application of consistent strategies to manage health problems”. Patients' experiences of continuity of care, as an outcome of care, rather than something provided was suggested by King et al. (2008), and associations between experienced continuity of care and health information needs were found. Yet, despite that improved patienteprovider communication resulted in higher experienced continuity of care this did not influence patients' strong preference to see their regular physician (Velikova et al., 2010). In the present study, only about half of the patients reported they had a named nurse navigator. The responsibilities for nurse navigators include most components identified to be of importance for patients' experience of continuity of care (Swedish Government Official Reports SOU, 2009:11). To what extent these responsibilities are fulfilled is to our knowledge unknown. Nurse navigators have key positions in cancer care (Case, 2011), and an increase of patients assigned and aware of having a named nurse navigator should be an improvement in experienced continuity of care. Whether this also will translate into minimizing the number of individuals the patients meet remains to be seen. The strengths of this study include the consecutive samples, the quite high response rates, use of a validated instrument, consistency in the procedure of measurement and the combination of patient reported data and registered data. Weaknesses of this study primarily concern the statistically significant lower response rate among younger patients and patients with head/neck-, skin-, lungor brain tumours. This is consistent with results from Nguyen et al. (2014) who showed that patients with lung or head and neck cancers were more likely to be non-responders to follow-up assessments in their study. They also found that patients with head and neck cancer were the least satisfied with the information provided and speculated whether this was related to treatment and
Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007
C.B. Berglund et al. / European Journal of Oncology Nursing xxx (2015) 1e7
side effects in this diagnostic group (Nguyen et al., 2014). Younger age has been associated with having received more information and wish for more information (Arraras et al., 2010; Husson et al., 2013). Regarding satisfaction with information the data is conflicting, with higher satisfaction among younger patients in a large population based study that included both genders and lower satisfaction among the younger women in a study of women with breast cancer (Bergenmar et al., 2014). However, the reasons for declining participation in this study are unknown, but the results must be interpreted cautiously for younger patients and patients with head/neck-, skin-, lung- or brain tumours. One of the natural limitations of questionnaire surveys are that no assumptions of patients' reasoning regarding e.g. information and continuity of care can be made. The design of the present study precludes any causal relationships but despite the overall high levels of satisfaction, suggestions for improvements include renewed efforts to minimize the number of health care professionals patients meet and an increased awareness of the importance of information exchange. Conclusions and implications for oncology nursing practice In conclusion, patients' satisfaction with nurse-led clinics was stable over time with generally high figures with the exception for continuity of care and information. About half of the patients wished for more information and patients' “satisfaction with information” were below 70, on a 0e100 scale, reflecting room for improvement regarding information. No statistically significant associations were found between “satisfaction with information” and patient reported continuity of care. Improvements in the assignment of, and patients' awareness of a named nurse navigator are warranted. A more person-centred approach, e.g. increase of information exchange, is needed in order to meet the wide variety of patients' information needs and preferences. Conflicts of interest None declared. Acknowledgements We thank Karolinska University Hospital, Department of Oncology for support and research time. References Arraras, J.I., Greimel, E., Sezer, O., Chie, W.-C., Bergenmar, M., Constantini, A., et al., 2010. An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients. European Journal of Cancer 46, 2726e2738. Barnet, M., Shaw, T., 2013. What do consumers see as important in the continuity of their care? Supportive Care Cancer 21, 2637e2642. n, U., Lidbrink, E., Bergh, J., Brandberg, Y., 2006. Improvements Bergenmar, M., Nyle in patient satisfaction at an outpatient clinic for patients with breast cancer. Acta Oncologica 45, 550e558. Bergenmar, M., Johansson, H., Sharp, L., 2014. Patients' perception of information after completion of adjuvant radiotherapy for breast cancer. European Journal of Oncology Nursing 18, 305e309. Borras, J.M., Sanchez-Hernandez, A., Navarro, M., Martinez, M., Mendez, E., Ponton, J.L., et al., 2001. Compliance, satisfaction, and quality of life of patients with colorectal cancer receiving home chemotherapy or outpatient treatment: a randomised controlled trial. British Medical Journal 322 (7290), 826.
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Please cite this article in press as: Berglund, C.B., et al., Nurse-led outpatient clinics in oncology care e Patient satisfaction, information and continuity of care, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.05.007