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How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP)
Oral Oncology (2006) 42, 726– 734
available at www.sciencedirect.com
journal homepage: http://intl.elsevierhealth.com/journals/oron/
How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP) C.D. Llewellyn
a,*
, M. McGurk b, J. Weinman
a
a
Health Psychology Section, Division of Psychology, Institute of Psychiatry (Guy’s Campus) King’s College London, SE1 9RT, UK b Department of Oral Surgery, Guy’s Hospital NHS Trust, London SE1 9RT, UK Received 7 November 2005; received in revised form 18 November 2005; accepted 22 November 2005
KEYWORDS
Summary Recent UK government recommendations state that high quality information must be provided for cancer patients. The objectives of this study were firstly, to explore how satisfied head and neck cancer (HNC) patients were with information provided about their illness and treatment, in order to identify areas of improvement. Secondly, to assess the extent to which satisfaction with information before treatment was predictive of long-term outcomes. Patients completed the satisfaction with information profile (SCIP), the Hospital Anxiety and Depression Scale (HADS) and the SF-12 Health Survey (SF-12v2) before treatment (n = 82), 1 month after the end of treatment (n = 68) and 6–8 months later (n = 50). Patients were generally satisfied with information, however key areas of improvement were identified, such as the provision of information about support groups, where to go for financial advice and the longterm affects of treatment on ability to work, physical functioning and QoL. Satisfaction with information before treatment was predictive of depression and Mental Component Summary scores (HR-QoL) 6–8 months after the end of treatment. This study highlights the need for tailored information provision and the impact on longitudinal outcomes of satisfying patient’s needs for information prior to treatment. c 2005 Elsevier Ltd. All rights reserved.
Satisfaction with information; Head and neck cancer; SCIP; HR-QoL; Depression
* Corresponding author. Present address: Division of Primary Care & Public Health, Brighton & Sussex Medical School, Mayfield House, Falmer, Brighton, BN1 9PH, UK. Tel.: +44 (0) 1273 642187; fax: +44 (0) 1273 644440. E-mail address: [email protected] (C.D. Llewellyn).
1368-8375/$ - see front matter c 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.oraloncology.2005.11.013
HNC patients’ levels of satisfaction with information
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Introduction
Methods
Recent United Kingdom Department of Health recommendations1 state that NHS Trusts and cancer services must provide high quality information for cancer patients. Research indicates that cancer patients are being provided with good generic information,2 however, cancer patients frequently report a mismatch between the level of information supplied and their individual informational requirements.3,4 Evidence indicates that lower levels of anxiety and depression are experienced by well-informed individuals,5 despite this there is a tendency for clinicians to focus on clinical and treatment issues. Some of the uncertainty and psychological pressures could be lessened with information that matches patient needs. For example, not all patients want extensive information about their condition and treatment at every stage of their illness.6 Alternatively, patients undergoing surgery often experience considerable anxiety if they receive too little information or information that cannot be fully understood.7 The majority of written pre-operative instructions are not understood by patients,8 and only 60% of cancer patients can correctly describe their treatment.9 Patients’ information needs vary and despite attempts at providing adequate information, many patients are not prepared for aspects of treatment and recovery. After treatment, some patients report that their experiences were not as expected due to the lack of information.3 It has previously been suggested that the provision of information should be tailored to meet the needs of the individual, and although a certain minimum standard is required by all, the extent should depend on individual requirements.10 The importance of individualised information provision has been supported by The National Cancer Alliance,11 who highlighted that information generally provided was inadequate for patients’ needs. Other studies, also underline the lack of satisfaction regarding information provision12,13 and suggest that HNC patients require more information on the impact of treatment and treatment options rather than specific details of the operation itself. In addition, more supportive information about access to help and solutions is required.14 Unmet informational needs and low satisfaction with information provided are related to unfavourable patient outcomes, such as, lower HR-QoL and higher levels of depression and anxiety.12,14 Therefore, it is clearly important to address unmet informational needs prior to treatment.
Procedure and participants
Objectives and hypothesis The objectives of this study were to assess HNC patients’ levels of satisfaction with information on illness and treatment, and to assess whether patients’ ratings significantly changed after treatment. It was anticipated that key areas could then be identified for improvement. Secondly, the extent to which satisfaction with information before treatment was predictive of long-term outcomes was assessed. The following hypothesis was tested: ‘Lower levels of satisfaction with information pre-treatment will be associated with worse outcomes after treatment’.
In the period July 2003 to July 2004, consecutive, newly diagnosed patients with confirmed SCC of the head and neck, were recruited prospectively from four hospitals in the South East of England following LREC approval and informed consent. Baseline data were obtained in the period between diagnosis and prior to treatment through self-completed questionnaires and medical records. Patients were required to complete measures 1 month after the end of treatment and again 6–8 months later. Measures The satisfaction with information profile (SCIP).15 The General Health Survey Questionnaire, Short Form 1216 (SF-12v2).à The Hospital Anxiety and Depression Scale17 (HADS).§
Analysis Change in satisfaction over time was assessed by examining individual items of the questionnaire in addition to subscales. This provided an opportunity to detect change in specific areas important to HNC patients and, secondly, to assess the direction of change that could be masked by analysis at the subscale level. Binary data (items 1–14 of the satisfaction with the amount and content of information subscale) were tested using McNemar tests for repeated measures. Wilcoxen Signed Ranks tests for two-related samples were conducted on ordinal data (items 15–21 of the satisfaction with the type and timing of information subscale) (see Appendix A). If low satisfaction with information pre-treatment (unmet needs for information) affected psychological well-being after treatment, the SCIP would correlate with high scores of emotional distress and QoL. Cross-lag Spearman correlation coefficients were calculated between satisfaction with information scores, and depression, anxiety, SF-12 PCS and MCS scores, 6–8 months after treatment. All tests were 2-tailed. Significantly correlated variables were entered into multiple linear regression models using a stepwise entry method, in order to assess how much of the variance in each The SCIP is a new measure described in more detail elsewhere15 to assess the extent to which HNC patients are satisfied with information received about their cancer treatment and the consequences of treatment (see Appendix 1). Higher scores indicate higher satisfaction. à The SF-12 is a multipurpose short-form consisting of 12 items. Similar to the SF-36, the SF-12 is a generic measure and version 2 results in two aggregate scores of ‘Physical Component Summary’ (PCS) and ‘Mental Component Summary’ (MCS). Higher scores represent better functioning. § The HADS a widely used and validated scale, was used to provide a brief measure of anxiety and depression. Higher scores indicate greater depression. Scores can range from 0 to 21 with scores of 11 or more indicating probable psychological morbidity.
728 of the outcome measures could be explained by satisfaction with information. Models contained respective outcome scores at baseline and also included any treatment related or socio-demographic factors found to be associated with the outcome measure. Variables were entered in the regression analyses at p < 0.05 and removed from the model at p > 0.10. Stepwise methods of variable entry were chosen, for exploratory purposes and as hypotheses were not explicitly theory driven. The following clinical and socio-demographic variables were dichotomised: Stage of cancer (early vs. advanced), marital status (living with partner vs. living alone), ethnicity (white vs. non-white) and highest qualification (none/O’ levels vs. further education and above). Site of cancer, treating hospital and type of treatment were dummy coded. Skewed depression scores were successfully transformed using a square root transformation.
Results Sample characteristics The sample consisted of 82 newly diagnosed HNC patients (76% response rate) of which 66% were male (mean age 60 (SD = 13) range 23–89 years) (Table 1). AJCC stages of disease were evenly distributed. There were no statistical differences in age, gender, ethnicity, stage and site of cancer, between those that participated and those that did not (Table 1). At 1 month follow-up (T2), 68 patients responded (83%), and at 6–8 month follow-up (T3), 50 patients responded (61%). 6% of patients died during the study, 17% had recurrences, 2% entered palliative care, and one patient had severe complications after surgery. Table 2 shows the socio-demographic and clinical characteristics of the follow-up samples. There were no significant differences between the sample of patients at follow-up and baseline, excluding stage of cancer, which was found to be higher in patients that were not included at T2 and T3 time-points and treatment type in patients assessed at T3.
Levels of satisfaction before and after treatment Satisfaction scores (amount and content of information subscale) were negatively skewed pre- (median = 11; mean = 9.9; SD = 9.9) and post-treatment (median = 11; mean = 10.1; SD = 4) with ranges of 14. Satisfaction scores with the type and timing of information were more normally distributed with a pre-treatment range of 13 (mean = 28.8; SD = 3.5) and post-treatment range of 21 (mean = 27.4; SD = 5.1).
Lack of information pre-treatment Many patients reported that they had not received information about a number of aspects related to their illness and treatment (Table 3). The worse information deficits were: where to go for financial support, access to patient support groups, what to do about treatment side-effects, how the
C.D. Llewellyn et al. treatment would affect ability to work, and how treatment may affect QoL and functioning long-term.
Lack of information post-treatment Areas of insufficient information were similar to those reported pre-treatment but 60% of follow-up patients reported they had not received information regarding financial support (Table 3). The possibility of further treatment being needed in the future had not been discussed with a large proportion of patients, and a third had still not received any information regarding support groups.
Is there any further information you wish you had received? A content analysis of the responses from the open ended question, ‘is there any further information you wish you had received?’ showed key areas that had been omitted during the information giving process. Fifty-two percent of the pre-treatment sample required no further information at the time compared with 31% of post-treatment patients. Areas of interest ranged from; more detail on the physical effects of treatment, to more information on the long-term effects of treatment and the likely length of recovery. The analysis also highlights that patients were not fully informed before treatment of some of the specific side-effects of treatment (both related to surgery and radiotherapy) and the severity of surgery. Analysis demonstrated that scores on the subscale of Satisfaction with the Type and Timing of information were significantly lower post-treatment than pre-treatment (z = 2.13, p < 0.05). Lower satisfaction with information after treatment was reported by 48% of the patients (n = 31) and only 27% reported higher levels of satisfaction post-treatment (n = 17). There was no change in satisfaction levels in 25% of the patients (n = 16). There was a significant reduction in levels of satisfaction in key areas after treatment (for example, the usefulness of the information to the patient (z = 2.01, p < 0.05), the detail of the information (z = 2.99, p < 0.005) and, the understanding of the information (z = 1.97, p < 0.05)). Satisfaction with the ‘amount and content’ of the information was lower posttreatment in 36% (n = 22) of the sample, although 42% (n = 25) reported higher satisfaction after treatment compared to pre-treatment levels. There was no change in 22% of the sample (n = 13).
Are pre-treatment levels of satisfaction associated with long-term outcomes? It was hypothesised that lower levels of satisfaction with information pre-treatment would be associated with worse outcomes 6–8 months after treatment. Approximately half the variance in depression after treatment could be accounted for by depression at baseline, satisfaction with the amount and content of information pre-treatment and stage of cancer (R2 = 0.53; adj. R2 = 0.49; F = 14.07; df = 3.38; p < 0.001), indicating that higher depression scores after treatment were predicted by higher depression scores and less satisfaction with information at baseline,
HNC patients’ levels of satisfaction with information Table 1
729
Socio-demographic and clinical characteristics of participants and non-participants at baseline Participants (n = 82) n (%)
Non-participants (n = 26) n (%)
Test statisticb
Gender Male Female
54 (66) 28 (34)
16 (61.5) 10 (38.5)
v2 = 0.16; p = 0.69
Age (yrs) Mean (SD) Range
59.9 (12.5) 23–89
63.0 (13.3) 26–81
t(106) = 1.08; p = 0.28
Ethnicity White Other
75 (92) 7 (8)
23 (89)a 2 (8)
Crame ´r’s V = 0.17; p = 0.20
Marital status Single/widowed/divorced Married/cohabiting
32 (39) 50 (61)
–a
–
Highest qualificationa None GCSE/O’ level GCE/A’ level Higher education Degree or higher
27 15 11 10 16
(33) (18) (13) (12) (20)
–a
–
AJCC stage of cancer Stage 1 Stage 2 Stage 3 Stage 4a–c
19 20 12 26
(23)a (24) (15) (32)
5 6 5 8
Stage dichotomised Early stage (1 & 2) Advanced stage (3 & 4)
Characteristic
(19)a (23) (19) (31)
Crame ´r’s V = 0.10; p = 0.96
39 (47)a 38 (47)
11 (42)a 13 (50)
Crame ´r’s V = 0.04; p = 0.68
Treatment planned Surgery only (S) Radiotherapy only (RT) S & RT RT & Chemotherapy (CT) S & RT & CT
22 (27) 21 (26) 26 (31) 9 (11) 4 (5)
–a
–
Site of cancer (ICD-10 code) Lip (C00) Tongue (C01 & 2) Floor of mouth (C04) Palate (C05) Other & unspecified parts of mouth (C06) Parotid/salivary gland (C07 & 8) Tonsil (C09) Oropharynx (C10) Nasopharynx (C11) Hypopharynx (C13) Laryngeal/glottic (C32) Skin (non-melanoma) (C44) Thyroid (C73)
4 (5) 19 (23) 12 (15) 2 (2) 4 (5) 2 (2) 7 (9) 12 (15) – 1 (1) 17 (21) 2 (2) –
2 (8) 3 (12) 6 (23) 1 (4) – – 2 (8) 2 (8) 2 (8) – 5 (19) 1 (4) 1 (8)
a b
Crame ´r’s V = 0.39; p = 0.30
Data missing/unobtainable. Independent t-tests, v2-tests and Crame ´r’s V-tests.
and more advanced stages of cancer (Table 4). Mental Component Summary scores were predicted by MCS baseline
scores, satisfaction with the amount and content of information pre-treatment, and stage of cancer (R2 = 0.34; adj.
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C.D. Llewellyn et al.
Table 2 Socio-demographic and clinical characteristics of follow-up samples and statistical analysis comparing patient samples at follow-up with sample at baseline Follow-up sample at T2 (n = 68) n (%)
Test statisticb
Follow-up sample at T3 (n = 50) n (%)
Test statisticb
Gender Male Female
44 (65) 24 (35)
v2 = 0.23; p = 0.63
29 (58) 21 (42)
v2 = 3.51; p = 0.06
Age (yrs) Mean (SD) Range
59.6 (13.10) 23–89
t(80) = 2.74; p = 0.65
60.94 (12.67)
t(80) = 1.17; p = 0.34
Ethnicity White Other
62 (91) 6 (9)
Crame ´r’s V = 0.02; p = 0.84
47 (94) 3 (6)
Crame ´r’s V = 0.11; p = 0.30
Marital status Single/widowed/divorced Married/cohabiting
28 (41) 40 (59)
Crame ´r’s V = 0.10; p = 0.38
22 (44) 28 (56)
Crame ´r’s V = 0.13; p = 0.25
Highest qualificationa None GCSE/O’ level GCE/A’ level Higher education Degree or higher
21 (31) 2 (18) 8 (12) 9 (13) 14 (21)
Crame ´r’s V = 0.17; p = 0.88
15 (30) 8 (16) 4 (8) 9 (18) 11 (22)
Crame ´r’s V = 0.31; p = 0.30
AJCC Stage of cancera Stage 1 Stage 2 Stage 3 Stage 4a–c
19 16 12 16
(28) (24) (18) (24)
Crame ´r’s V = 0.48; p = 0.003
17 (34) 11 (22) 10 (20) 7 (14)
Crame ´r’s V = 0.53; p = 0.001
Stage dichotomiseda Early stage (1 & 2) Advanced stage (3 & 4)
35 (52) 28 (41)
Crame ´r’s V = 0.21; p = 0.07
28 (56) 17 (34)
Crame ´r’s V = 0.27; p = 0.02
Treatment Surgery only (S) Radiotherapy only (RT) S & RT RT & Chemotherapy (CT) S & RT & CT
20 (29) 17 (25) 21 (31) 6 (9) 4 (6)
Crame ´r’s V = 0.26; p = 0.26
18 (36) 14 (28) 12 (24) 4 (8) 2 (4)
Crame ´r’s V = 0.36; p = 0.03
Characteristic
Site of cancer (ICD-10 code) Lip (C00) Tongue (C01 & 2) Floor of mouth (C04) Palate (C05) Other & unspecified parts of mouth (C06) Parotid/salivary gland (C07 & 8) Tonsil (C09) Oropharynx (C10) Hypopharynx (C13) Laryngeal/glottic (C32) Skin (non-melanoma) (C44) a
3 (4) 17 (25) 12 (18) 2 (3) 4 (6)
Crame ´r’s V = 0.39; p = 0.34
3 (6) 12 (24) 7 (14) 2 (4) 4 (8)
2 (3)
1 (2)
5 (7) 7 (10) 1 (2) 14 (21) 1 (2)
4 (8) 5 (10) 1 (2) 10 (20) 1 (2)
Crame ´r’s V = 0.33; p = 0.61
Data missing/unobtainable. Independent t-tests, v2-tests and Crame ´r’s V-tests comparing respondents at each time point with drop-outs from original baseline sample. b
HNC patients’ levels of satisfaction with information Table 3
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Number of participants who did not receive any information, based on SCIP items
SCIP item
Not supplied with any information pre-treatment (n = 82) n (%)
Not supplied with any information post treatment (n = 68) n (%)
Who to ask/where to go for financial support Patient support groups for you and your partner What you should do if you experience side-effects Whether your treatment interferes with other medications you may be taking How your treatment may impact on your quality of life over the next year Whether you may need further treatment in future The effects of treatment on your ability to work What the risks of you experiencing complications are The long-term impact of treatment on functioning How long you expect recovery to take What the risks of you experiencing side-effects are Whether the treatment has any unwanted side-effects How you may expect to feel immediately after treatment The effect of treatment on your appearance
64 43 41 37
41 23 19 21
Table 4 Predictive factors of depression 6–8 months after treatment (n = 42) Predictive factors assessed at baseline
Std b
Baseline depression scores Satisfaction with amount and content of information Stage of cancer
0.43** –0.34** 1.09*
Overall model: R2 = 0.53; adj. R2 = 0.49; F = 14.07; df = 3.38.*** * p 6 0.01. ** p < 0.005. *** p < 0.001.
Table 5 Predictive factors of Mental Component Summary (MCS) scores 6–8 months after treatment (n = 42) Predictive factors assessed at baseline
2
Std b 0.33* 0.32*
Baseline MCS scores Satisfaction with amount and content of information Stage of cancer
0.29* 2
Overall model: R = 0.34; adj. R = 0.28; F = 6.42; df = 3.38.** * p < 0.05. ** p < 0.001.
R2 = 0.28; F = 6.42; df = 3.38; p < 0.001), indicating better mental functioning was predicted by better mental functioning and higher levels of satisfaction with information at baseline, and earlier tumour stages (Table 5). Longitudinal PCS or anxiety scores were not associated with satisfaction with information.
(78) (52) (50) (45)
(60) (34) (28) (31)
35 (43)
34 (50)
30 29 29 26 22 19 18 15 15
29 21 17 19 18 4 5 5 15
(37) (35) (35) (32) (27) (23) (22) (18) (18)
(43) (31) (25) (28) (26) (6) (7) (7) (22)
Discussion The informational needs of HNC patients pre- and post-treatment In general patients were found to be satisfied with the information given to them pre-treatment, although variability existed within the distribution of scores. Despite this good level of satisfaction, the study demonstrated that many patients had not received information about many aspects of their life expected to be affected by their illness and treatment. One of the commonest areas neglected was where to go for financial advice (78% of the sample). Of greater concern were the results of the survey 1 month after treatment had finished. Nearly two-thirds of patients replied that they had still not received any information about financial support or where to go for financial advice. It could be argued that the NHS does not have a responsibility for providing information about the non-medical consequences of illness, however, treatment for HNC can last for many months and the financial repercussions can be severe if not expected. Patients could easily be informed of other organisations that could offer further advice or even simply advised that finances should be organised prior to treatment. Analysis of the open-ended questions, demonstrated that patients required more information after treatment. Whether this was as a result of not being provided the information prior to treatment, or whether needs had changed is unknown. Key topics identified for future improvement included more information on the long-term effects of treatment and length of recovery. It also appears from comments that some patients were not fully informed of common side-effects of both surgery and radiotherapy and issues relating to the anticipated severity of surgery. These findings are supported by a qualitative study,3 in which it was demonstrated that patients were not always fully informed
732 of the likely consequences of treatment and the likelihood of complications. Another key area for improvement was in the provision of information about support groups. Over half of the current sample had not received any information about support groups prior to their treatment and a third reported the same 1 month after treatment. A report by The King’s Fund (1997) found that many HNC patients did not know of the existence of support groups and that some professionals did not advertise support groups as patients did not ask for them.18 Local support groups specifically for HNC patients and partners exist at many of the recruiting sites, and information about these could be supplied regardless of whether patients explicitly ask or appear to have difficulties coping. None of the participants replied that they had received too much information when asked after treatment. Recent publications have highlighted the mismatch between the type of information provided and what patients desire.12,14 HNC patients want to be provided with more information about the impact of their treatment, whereas clinicians have been reported as concentrating too much on the specific details of the operation.12 Similarly, it has been suggested that written information about cancer and its management should reinforce and supplement information obtained from health professionals.19
The relationship between pre-treatment satisfaction with information and longitudinal outcomes It was hypothesised that lower levels of satisfaction with information would be associated with worse outcomes after treatment. It was found that patients who reported lower levels of emotional functioning and higher levels of depression were less satisfied with the information received before treatment. In line with our findings, the few published studies assessing levels of satisfaction with information, have demonstrated significant associations between satisfaction and outcomes such as HR-QoL20 and rehabilitation.21 It is interesting to note that our study found that satisfaction with information impacted more strongly on mental health rather than physical functioning, which may have important implications for reducing depression long-term.
Tailoring information to individual’s needs Written materials provided for HNC patients typically consist of generic information, often in the form of pamphlets or booklets and are designed for generic use amongst all patients with HNC. Although these materials are a cost-effective method for providing valuable information, it could be argued that their one-size fits all approach is not sensitive to the variation that exists between people in their desire for and understanding of information.22 Satisfaction with information has been shown to influence long-term outcomes after treatment. With this in mind and, as recommended by other authors,13,2 it would seem judicious to assess HNC patients needs for information on an individual basis.
C.D. Llewellyn et al. Research focusing on tailored communication interventions to change health behaviours can easily be applied to tailored information for patients undergoing treatment for cancer. Studies have shown that matching health education materials or messages to patient’s psychological characteristics (commonly coping style) have been found to be more effective in promoting behaviour change in a wide range of areas than non-tailored materials.23,24 In addition, tailored communications may also be appropriate for HNC patients post-treatment to address any functional and emotional difficulties they may have. However, more research is needed to identify the circumstances in which tailored communications are most and least effective.
Limitations The finding of a lack of information prior to treatment is perhaps not surprising as it is possible that some of the patients may have received information after completing the first questionnaire. Information is typically ‘trickled’ down over time as a result of contact with different health care professionals. Due to contact with many different professionals at different sites, it has also previously been noted that this can be a source of conflicting information and omissions.12 When collecting the data for the present study, an effort was made to only distribute questionnaires to patients on their second or third visit, despite the short-time period between diagnosis and treatment. This was for a number of reasons, but primarily to ensure that patients had been seen by a consultant a few times in order to gain an understanding of their illness and treatment. It is equally likely that the patients in the post-treatment group were skewed towards higher levels of satisfaction as they were probably feeling less ill than patients who dropped out of the study. Unfortunately, it is not known how satisfied these patients were after treatment and it is likely that these patients are at higher risk of worse outcomes than those remaining in the study.
Conclusions The main objectives of this study were to assess patients’ satisfaction with information given to them before treatment, in order to identify key areas for future improvement. In addition, the investigation into the extent to which satisfaction with information pre-treatment was predictive of longitudinal outcomes could assist with the targeting of appropriate interventions pre-treatment, with the aim of enhancing patient outcomes over time. An additional positive aspect of enhancing patient satisfaction with information, by providing a good match between the provision of information and patients’ requirements, is the promotion of partnership between the patient and the health care professional. The need for good communication between health professionals and patients is emphasised in current NHS policy25 and also serves to aid the decision making process and self-management by empowering the patient.26
HNC patients’ levels of satisfaction with information
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Acknowledgements CDL was supported by a grant received from Guy’s and St Thomas’ Charitable Foundation (R020216). Thanks to all
the patients who assisted with this project and consultants at Guy’s & St Thomas’ Hospitals, The Royal Sussex County Hospital and The Royal Marsden Hospital, in the UK for supporting this work.
Appendix A Items included in the satisfaction with cancer information profile (SCIP)a Subscale
Do you feel as if you have received enough information about:
Too much
About right
Too little
None wanted
Satisfaction with the amount and content of information
Whether the treatment has any unwanted side-effects What the risks of you experiencing side-effects are What the risks of you experiencing complications are What you should do if you experience unwanted side-effects Whether your treatment interferes with other medicines you may be taking How you may expect to feel immediately after treatment The effects of treatment on your ability to work Who to ask/where to go for possible financial support Whether you may need further treatment in the future The effect of treatment on your appearance The long-term impact of treatment on functioning (daily activities) How long you expect recovery to take How your treatment may impact on your quality of life over the next year Patient support groups for you and your partner
Score: 0
1
0
1
Overall, how would you rate the following:
Very satisfied
The usefulness of the information to you The usefulness of the information to your partner/family The amount of written information supplied The amount of verbal information supplied The timing at which you received information The detail of the information given to you How understandable the information was to you
Score: 5
Satisfaction with the type and timing of information
a
Possible subscale score: 0–14
Satisfied
Neither
Dissatisfied
Very dissatisfied
4
3
2
1
Possible subscale score: 7–35
Actual questionnaire is formatted differently. This gives a representation of the items, sections and scoring for information only.
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References 1. Department of Health. The NHS plan: a plan for investment, a plan for reform. London: HMSO, 2000. 2. Semple CJ, McGowan B. Need for appropriate written information for patients, with particular reference to head and neck cancer. J Clin Nursing 2002;11(5):585–93. 3. Llewellyn CD, McGurk M, Weinman J. Striking the right balance: a qualitative pilot study examining the role of information on the development of expectations in patients treated for head and neck cancer. Psych Health Med 2005;10(2):180–93. 4. Ziegler L, Newell R, Stafford N, Lewin R. A literature review of head and neck cancer patients information needs, experiences and views regarding decision making. Eur J Cancer Care 2004;13:119–26. 5. Fallowfield LJ, Baum M, Maguire GP. Effects of breast conservation on psychological morbidity associated with diagnosis and treatment of early breast cancer. Br Med J 1986;293:1331–4. 6. Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K. Cancer patients’ information needs and information seeking behaviour: in depth interview study. Br Med J 2000;320:909–13. 7. Krupat E, Fancey M, Cleary PD. Information and its impact on satisfaction among surgical patients. Social Sci Med 2000;51:1817–25. 8. Livingston L. Study shows preoperative instructions often not understood by patients. Same Day Surgery 1989;13:123–4. 9. Cassileth RB, Zupkis RV, Sutton-Smith K, March V. Informed consent–why are its goals imperfectly realized? New England J Med 1980;302:869–900. 10. Weinman J. Providing written information for patients: psychological considerations. J Roy Soc Med 1990;83:303–5. 11. National Cancer Alliance Head and neck cancer patients views and experiences. 2002. NCA Report no. 3. 12. Edwards D. Head and neck cancer services: views of patients, their families and professionals. Br J Oral Maxillofac Surgery 1998;36:99–102. 13. Newell R, Ziegler L, Stafford N, Lewin RJ. The information needs of head and neck cancer patients prior to surgery. Ann Roy College Surgeons England 2004;86:407–10.
C.D. Llewellyn et al. 14. Mesters I, van den Borne B, De Boer M, Pruyn J. Measuring information needs among cancer patients. Patient Educ Counsel 2001;43:253–62. 15. Llewellyn CD, Horne R, McGurk, M, Weinman J. Development and preliminary validation of a new measure to assess satisfaction with information amongst head and neck cancer patients: the satisfaction with cancer information profile (SCIP) Head Neck, in press. 16. Ware JE, Kosinski M, Turner-Bowker DM, Gandek B. How to score version 2 of the SF-12 Health Survey (with a supplement documenting Version 1). Lincoln: RI: QualityMetric Incorporated, 2002. 17. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psych Scand 1983;67:361–70. 18. Edwards D. Face to face: patient, relative and professional views of head and neck cancer care. 1997. 19. Ramirez AJ, Richards GJG, Rees WM, O’Neill WM, Wilkinson S, Young H, et al. Effective communication in oncology. J Cancer Care 1994;3:84–93. 20. Yu CL, Fielding R, Chan CL, Sham JS. Chinese nasopharyngeal carcinoma patients treated with radiotherapy: association between satisfaction with information provided and quality of life. Cancer 2001;92(8):2126–35. 21. De Boer MF, Pruyn JFA, VandenBorne B, Knegt PP, Ryckman RM, Verwoerd CDA. Rehabilitation outcomes of long-term survivors treated for head and neck cancer. Head Neck 1995;17(6): 503–15. 22. Kreuter MW, Strecher VJ, Glassman B. One size does not fit all: the case for tailoring cancer prevention materials. Ann Behav Med 1999;21:276–83. 23. Bull FC, Kreuter MW, Scharff DP. Effects of tailored, personalised, and general materials on physical activity. Patient Educ Counsel 1999;36:181–92. 24. Prochaska JO, DiClemente CC, Velicer WF, Rossi JS. Standardised, individualised, interactive and personalised self-help programs for smoking cessation. Health Psychol 1993;12: 399–405. 25. NHS Centre for Reviews and Dissemination. Effective health care informing, communicating and sharing decisions with people who have cancer. Plymouth: Latimer Trend Ltd.; 2000. 26. Grahn G. Patient information as a necessary therapeutic intervention. Eur J Cancer Care 1996;5(suppl. 1):1–8.
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How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP) C.D. Llewellyn
a,*
, M. McGurk b, J. Weinman
a
a
Health Psychology Section, Division of Psychology, Institute of Psychiatry (Guy’s Campus) King’s College London, SE1 9RT, UK b Department of Oral Surgery, Guy’s Hospital NHS Trust, London SE1 9RT, UK Received 7 November 2005; received in revised form 18 November 2005; accepted 22 November 2005
KEYWORDS
Summary Recent UK government recommendations state that high quality information must be provided for cancer patients. The objectives of this study were firstly, to explore how satisfied head and neck cancer (HNC) patients were with information provided about their illness and treatment, in order to identify areas of improvement. Secondly, to assess the extent to which satisfaction with information before treatment was predictive of long-term outcomes. Patients completed the satisfaction with information profile (SCIP), the Hospital Anxiety and Depression Scale (HADS) and the SF-12 Health Survey (SF-12v2) before treatment (n = 82), 1 month after the end of treatment (n = 68) and 6–8 months later (n = 50). Patients were generally satisfied with information, however key areas of improvement were identified, such as the provision of information about support groups, where to go for financial advice and the longterm affects of treatment on ability to work, physical functioning and QoL. Satisfaction with information before treatment was predictive of depression and Mental Component Summary scores (HR-QoL) 6–8 months after the end of treatment. This study highlights the need for tailored information provision and the impact on longitudinal outcomes of satisfying patient’s needs for information prior to treatment. c 2005 Elsevier Ltd. All rights reserved.
Satisfaction with information; Head and neck cancer; SCIP; HR-QoL; Depression
* Corresponding author. Present address: Division of Primary Care & Public Health, Brighton & Sussex Medical School, Mayfield House, Falmer, Brighton, BN1 9PH, UK. Tel.: +44 (0) 1273 642187; fax: +44 (0) 1273 644440. E-mail address: [email protected] (C.D. Llewellyn).
1368-8375/$ - see front matter c 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.oraloncology.2005.11.013
HNC patients’ levels of satisfaction with information
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Introduction
Methods
Recent United Kingdom Department of Health recommendations1 state that NHS Trusts and cancer services must provide high quality information for cancer patients. Research indicates that cancer patients are being provided with good generic information,2 however, cancer patients frequently report a mismatch between the level of information supplied and their individual informational requirements.3,4 Evidence indicates that lower levels of anxiety and depression are experienced by well-informed individuals,5 despite this there is a tendency for clinicians to focus on clinical and treatment issues. Some of the uncertainty and psychological pressures could be lessened with information that matches patient needs. For example, not all patients want extensive information about their condition and treatment at every stage of their illness.6 Alternatively, patients undergoing surgery often experience considerable anxiety if they receive too little information or information that cannot be fully understood.7 The majority of written pre-operative instructions are not understood by patients,8 and only 60% of cancer patients can correctly describe their treatment.9 Patients’ information needs vary and despite attempts at providing adequate information, many patients are not prepared for aspects of treatment and recovery. After treatment, some patients report that their experiences were not as expected due to the lack of information.3 It has previously been suggested that the provision of information should be tailored to meet the needs of the individual, and although a certain minimum standard is required by all, the extent should depend on individual requirements.10 The importance of individualised information provision has been supported by The National Cancer Alliance,11 who highlighted that information generally provided was inadequate for patients’ needs. Other studies, also underline the lack of satisfaction regarding information provision12,13 and suggest that HNC patients require more information on the impact of treatment and treatment options rather than specific details of the operation itself. In addition, more supportive information about access to help and solutions is required.14 Unmet informational needs and low satisfaction with information provided are related to unfavourable patient outcomes, such as, lower HR-QoL and higher levels of depression and anxiety.12,14 Therefore, it is clearly important to address unmet informational needs prior to treatment.
Procedure and participants
Objectives and hypothesis The objectives of this study were to assess HNC patients’ levels of satisfaction with information on illness and treatment, and to assess whether patients’ ratings significantly changed after treatment. It was anticipated that key areas could then be identified for improvement. Secondly, the extent to which satisfaction with information before treatment was predictive of long-term outcomes was assessed. The following hypothesis was tested: ‘Lower levels of satisfaction with information pre-treatment will be associated with worse outcomes after treatment’.
In the period July 2003 to July 2004, consecutive, newly diagnosed patients with confirmed SCC of the head and neck, were recruited prospectively from four hospitals in the South East of England following LREC approval and informed consent. Baseline data were obtained in the period between diagnosis and prior to treatment through self-completed questionnaires and medical records. Patients were required to complete measures 1 month after the end of treatment and again 6–8 months later. Measures The satisfaction with information profile (SCIP).15 The General Health Survey Questionnaire, Short Form 1216 (SF-12v2).à The Hospital Anxiety and Depression Scale17 (HADS).§
Analysis Change in satisfaction over time was assessed by examining individual items of the questionnaire in addition to subscales. This provided an opportunity to detect change in specific areas important to HNC patients and, secondly, to assess the direction of change that could be masked by analysis at the subscale level. Binary data (items 1–14 of the satisfaction with the amount and content of information subscale) were tested using McNemar tests for repeated measures. Wilcoxen Signed Ranks tests for two-related samples were conducted on ordinal data (items 15–21 of the satisfaction with the type and timing of information subscale) (see Appendix A). If low satisfaction with information pre-treatment (unmet needs for information) affected psychological well-being after treatment, the SCIP would correlate with high scores of emotional distress and QoL. Cross-lag Spearman correlation coefficients were calculated between satisfaction with information scores, and depression, anxiety, SF-12 PCS and MCS scores, 6–8 months after treatment. All tests were 2-tailed. Significantly correlated variables were entered into multiple linear regression models using a stepwise entry method, in order to assess how much of the variance in each The SCIP is a new measure described in more detail elsewhere15 to assess the extent to which HNC patients are satisfied with information received about their cancer treatment and the consequences of treatment (see Appendix 1). Higher scores indicate higher satisfaction. à The SF-12 is a multipurpose short-form consisting of 12 items. Similar to the SF-36, the SF-12 is a generic measure and version 2 results in two aggregate scores of ‘Physical Component Summary’ (PCS) and ‘Mental Component Summary’ (MCS). Higher scores represent better functioning. § The HADS a widely used and validated scale, was used to provide a brief measure of anxiety and depression. Higher scores indicate greater depression. Scores can range from 0 to 21 with scores of 11 or more indicating probable psychological morbidity.
728 of the outcome measures could be explained by satisfaction with information. Models contained respective outcome scores at baseline and also included any treatment related or socio-demographic factors found to be associated with the outcome measure. Variables were entered in the regression analyses at p < 0.05 and removed from the model at p > 0.10. Stepwise methods of variable entry were chosen, for exploratory purposes and as hypotheses were not explicitly theory driven. The following clinical and socio-demographic variables were dichotomised: Stage of cancer (early vs. advanced), marital status (living with partner vs. living alone), ethnicity (white vs. non-white) and highest qualification (none/O’ levels vs. further education and above). Site of cancer, treating hospital and type of treatment were dummy coded. Skewed depression scores were successfully transformed using a square root transformation.
Results Sample characteristics The sample consisted of 82 newly diagnosed HNC patients (76% response rate) of which 66% were male (mean age 60 (SD = 13) range 23–89 years) (Table 1). AJCC stages of disease were evenly distributed. There were no statistical differences in age, gender, ethnicity, stage and site of cancer, between those that participated and those that did not (Table 1). At 1 month follow-up (T2), 68 patients responded (83%), and at 6–8 month follow-up (T3), 50 patients responded (61%). 6% of patients died during the study, 17% had recurrences, 2% entered palliative care, and one patient had severe complications after surgery. Table 2 shows the socio-demographic and clinical characteristics of the follow-up samples. There were no significant differences between the sample of patients at follow-up and baseline, excluding stage of cancer, which was found to be higher in patients that were not included at T2 and T3 time-points and treatment type in patients assessed at T3.
Levels of satisfaction before and after treatment Satisfaction scores (amount and content of information subscale) were negatively skewed pre- (median = 11; mean = 9.9; SD = 9.9) and post-treatment (median = 11; mean = 10.1; SD = 4) with ranges of 14. Satisfaction scores with the type and timing of information were more normally distributed with a pre-treatment range of 13 (mean = 28.8; SD = 3.5) and post-treatment range of 21 (mean = 27.4; SD = 5.1).
Lack of information pre-treatment Many patients reported that they had not received information about a number of aspects related to their illness and treatment (Table 3). The worse information deficits were: where to go for financial support, access to patient support groups, what to do about treatment side-effects, how the
C.D. Llewellyn et al. treatment would affect ability to work, and how treatment may affect QoL and functioning long-term.
Lack of information post-treatment Areas of insufficient information were similar to those reported pre-treatment but 60% of follow-up patients reported they had not received information regarding financial support (Table 3). The possibility of further treatment being needed in the future had not been discussed with a large proportion of patients, and a third had still not received any information regarding support groups.
Is there any further information you wish you had received? A content analysis of the responses from the open ended question, ‘is there any further information you wish you had received?’ showed key areas that had been omitted during the information giving process. Fifty-two percent of the pre-treatment sample required no further information at the time compared with 31% of post-treatment patients. Areas of interest ranged from; more detail on the physical effects of treatment, to more information on the long-term effects of treatment and the likely length of recovery. The analysis also highlights that patients were not fully informed before treatment of some of the specific side-effects of treatment (both related to surgery and radiotherapy) and the severity of surgery. Analysis demonstrated that scores on the subscale of Satisfaction with the Type and Timing of information were significantly lower post-treatment than pre-treatment (z = 2.13, p < 0.05). Lower satisfaction with information after treatment was reported by 48% of the patients (n = 31) and only 27% reported higher levels of satisfaction post-treatment (n = 17). There was no change in satisfaction levels in 25% of the patients (n = 16). There was a significant reduction in levels of satisfaction in key areas after treatment (for example, the usefulness of the information to the patient (z = 2.01, p < 0.05), the detail of the information (z = 2.99, p < 0.005) and, the understanding of the information (z = 1.97, p < 0.05)). Satisfaction with the ‘amount and content’ of the information was lower posttreatment in 36% (n = 22) of the sample, although 42% (n = 25) reported higher satisfaction after treatment compared to pre-treatment levels. There was no change in 22% of the sample (n = 13).
Are pre-treatment levels of satisfaction associated with long-term outcomes? It was hypothesised that lower levels of satisfaction with information pre-treatment would be associated with worse outcomes 6–8 months after treatment. Approximately half the variance in depression after treatment could be accounted for by depression at baseline, satisfaction with the amount and content of information pre-treatment and stage of cancer (R2 = 0.53; adj. R2 = 0.49; F = 14.07; df = 3.38; p < 0.001), indicating that higher depression scores after treatment were predicted by higher depression scores and less satisfaction with information at baseline,
HNC patients’ levels of satisfaction with information Table 1
729
Socio-demographic and clinical characteristics of participants and non-participants at baseline Participants (n = 82) n (%)
Non-participants (n = 26) n (%)
Test statisticb
Gender Male Female
54 (66) 28 (34)
16 (61.5) 10 (38.5)
v2 = 0.16; p = 0.69
Age (yrs) Mean (SD) Range
59.9 (12.5) 23–89
63.0 (13.3) 26–81
t(106) = 1.08; p = 0.28
Ethnicity White Other
75 (92) 7 (8)
23 (89)a 2 (8)
Crame ´r’s V = 0.17; p = 0.20
Marital status Single/widowed/divorced Married/cohabiting
32 (39) 50 (61)
–a
–
Highest qualificationa None GCSE/O’ level GCE/A’ level Higher education Degree or higher
27 15 11 10 16
(33) (18) (13) (12) (20)
–a
–
AJCC stage of cancer Stage 1 Stage 2 Stage 3 Stage 4a–c
19 20 12 26
(23)a (24) (15) (32)
5 6 5 8
Stage dichotomised Early stage (1 & 2) Advanced stage (3 & 4)
Characteristic
(19)a (23) (19) (31)
Crame ´r’s V = 0.10; p = 0.96
39 (47)a 38 (47)
11 (42)a 13 (50)
Crame ´r’s V = 0.04; p = 0.68
Treatment planned Surgery only (S) Radiotherapy only (RT) S & RT RT & Chemotherapy (CT) S & RT & CT
22 (27) 21 (26) 26 (31) 9 (11) 4 (5)
–a
–
Site of cancer (ICD-10 code) Lip (C00) Tongue (C01 & 2) Floor of mouth (C04) Palate (C05) Other & unspecified parts of mouth (C06) Parotid/salivary gland (C07 & 8) Tonsil (C09) Oropharynx (C10) Nasopharynx (C11) Hypopharynx (C13) Laryngeal/glottic (C32) Skin (non-melanoma) (C44) Thyroid (C73)
4 (5) 19 (23) 12 (15) 2 (2) 4 (5) 2 (2) 7 (9) 12 (15) – 1 (1) 17 (21) 2 (2) –
2 (8) 3 (12) 6 (23) 1 (4) – – 2 (8) 2 (8) 2 (8) – 5 (19) 1 (4) 1 (8)
a b
Crame ´r’s V = 0.39; p = 0.30
Data missing/unobtainable. Independent t-tests, v2-tests and Crame ´r’s V-tests.
and more advanced stages of cancer (Table 4). Mental Component Summary scores were predicted by MCS baseline
scores, satisfaction with the amount and content of information pre-treatment, and stage of cancer (R2 = 0.34; adj.
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C.D. Llewellyn et al.
Table 2 Socio-demographic and clinical characteristics of follow-up samples and statistical analysis comparing patient samples at follow-up with sample at baseline Follow-up sample at T2 (n = 68) n (%)
Test statisticb
Follow-up sample at T3 (n = 50) n (%)
Test statisticb
Gender Male Female
44 (65) 24 (35)
v2 = 0.23; p = 0.63
29 (58) 21 (42)
v2 = 3.51; p = 0.06
Age (yrs) Mean (SD) Range
59.6 (13.10) 23–89
t(80) = 2.74; p = 0.65
60.94 (12.67)
t(80) = 1.17; p = 0.34
Ethnicity White Other
62 (91) 6 (9)
Crame ´r’s V = 0.02; p = 0.84
47 (94) 3 (6)
Crame ´r’s V = 0.11; p = 0.30
Marital status Single/widowed/divorced Married/cohabiting
28 (41) 40 (59)
Crame ´r’s V = 0.10; p = 0.38
22 (44) 28 (56)
Crame ´r’s V = 0.13; p = 0.25
Highest qualificationa None GCSE/O’ level GCE/A’ level Higher education Degree or higher
21 (31) 2 (18) 8 (12) 9 (13) 14 (21)
Crame ´r’s V = 0.17; p = 0.88
15 (30) 8 (16) 4 (8) 9 (18) 11 (22)
Crame ´r’s V = 0.31; p = 0.30
AJCC Stage of cancera Stage 1 Stage 2 Stage 3 Stage 4a–c
19 16 12 16
(28) (24) (18) (24)
Crame ´r’s V = 0.48; p = 0.003
17 (34) 11 (22) 10 (20) 7 (14)
Crame ´r’s V = 0.53; p = 0.001
Stage dichotomiseda Early stage (1 & 2) Advanced stage (3 & 4)
35 (52) 28 (41)
Crame ´r’s V = 0.21; p = 0.07
28 (56) 17 (34)
Crame ´r’s V = 0.27; p = 0.02
Treatment Surgery only (S) Radiotherapy only (RT) S & RT RT & Chemotherapy (CT) S & RT & CT
20 (29) 17 (25) 21 (31) 6 (9) 4 (6)
Crame ´r’s V = 0.26; p = 0.26
18 (36) 14 (28) 12 (24) 4 (8) 2 (4)
Crame ´r’s V = 0.36; p = 0.03
Characteristic
Site of cancer (ICD-10 code) Lip (C00) Tongue (C01 & 2) Floor of mouth (C04) Palate (C05) Other & unspecified parts of mouth (C06) Parotid/salivary gland (C07 & 8) Tonsil (C09) Oropharynx (C10) Hypopharynx (C13) Laryngeal/glottic (C32) Skin (non-melanoma) (C44) a
3 (4) 17 (25) 12 (18) 2 (3) 4 (6)
Crame ´r’s V = 0.39; p = 0.34
3 (6) 12 (24) 7 (14) 2 (4) 4 (8)
2 (3)
1 (2)
5 (7) 7 (10) 1 (2) 14 (21) 1 (2)
4 (8) 5 (10) 1 (2) 10 (20) 1 (2)
Crame ´r’s V = 0.33; p = 0.61
Data missing/unobtainable. Independent t-tests, v2-tests and Crame ´r’s V-tests comparing respondents at each time point with drop-outs from original baseline sample. b
HNC patients’ levels of satisfaction with information Table 3
731
Number of participants who did not receive any information, based on SCIP items
SCIP item
Not supplied with any information pre-treatment (n = 82) n (%)
Not supplied with any information post treatment (n = 68) n (%)
Who to ask/where to go for financial support Patient support groups for you and your partner What you should do if you experience side-effects Whether your treatment interferes with other medications you may be taking How your treatment may impact on your quality of life over the next year Whether you may need further treatment in future The effects of treatment on your ability to work What the risks of you experiencing complications are The long-term impact of treatment on functioning How long you expect recovery to take What the risks of you experiencing side-effects are Whether the treatment has any unwanted side-effects How you may expect to feel immediately after treatment The effect of treatment on your appearance
64 43 41 37
41 23 19 21
Table 4 Predictive factors of depression 6–8 months after treatment (n = 42) Predictive factors assessed at baseline
Std b
Baseline depression scores Satisfaction with amount and content of information Stage of cancer
0.43** –0.34** 1.09*
Overall model: R2 = 0.53; adj. R2 = 0.49; F = 14.07; df = 3.38.*** * p 6 0.01. ** p < 0.005. *** p < 0.001.
Table 5 Predictive factors of Mental Component Summary (MCS) scores 6–8 months after treatment (n = 42) Predictive factors assessed at baseline
2
Std b 0.33* 0.32*
Baseline MCS scores Satisfaction with amount and content of information Stage of cancer
0.29* 2
Overall model: R = 0.34; adj. R = 0.28; F = 6.42; df = 3.38.** * p < 0.05. ** p < 0.001.
R2 = 0.28; F = 6.42; df = 3.38; p < 0.001), indicating better mental functioning was predicted by better mental functioning and higher levels of satisfaction with information at baseline, and earlier tumour stages (Table 5). Longitudinal PCS or anxiety scores were not associated with satisfaction with information.
(78) (52) (50) (45)
(60) (34) (28) (31)
35 (43)
34 (50)
30 29 29 26 22 19 18 15 15
29 21 17 19 18 4 5 5 15
(37) (35) (35) (32) (27) (23) (22) (18) (18)
(43) (31) (25) (28) (26) (6) (7) (7) (22)
Discussion The informational needs of HNC patients pre- and post-treatment In general patients were found to be satisfied with the information given to them pre-treatment, although variability existed within the distribution of scores. Despite this good level of satisfaction, the study demonstrated that many patients had not received information about many aspects of their life expected to be affected by their illness and treatment. One of the commonest areas neglected was where to go for financial advice (78% of the sample). Of greater concern were the results of the survey 1 month after treatment had finished. Nearly two-thirds of patients replied that they had still not received any information about financial support or where to go for financial advice. It could be argued that the NHS does not have a responsibility for providing information about the non-medical consequences of illness, however, treatment for HNC can last for many months and the financial repercussions can be severe if not expected. Patients could easily be informed of other organisations that could offer further advice or even simply advised that finances should be organised prior to treatment. Analysis of the open-ended questions, demonstrated that patients required more information after treatment. Whether this was as a result of not being provided the information prior to treatment, or whether needs had changed is unknown. Key topics identified for future improvement included more information on the long-term effects of treatment and length of recovery. It also appears from comments that some patients were not fully informed of common side-effects of both surgery and radiotherapy and issues relating to the anticipated severity of surgery. These findings are supported by a qualitative study,3 in which it was demonstrated that patients were not always fully informed
732 of the likely consequences of treatment and the likelihood of complications. Another key area for improvement was in the provision of information about support groups. Over half of the current sample had not received any information about support groups prior to their treatment and a third reported the same 1 month after treatment. A report by The King’s Fund (1997) found that many HNC patients did not know of the existence of support groups and that some professionals did not advertise support groups as patients did not ask for them.18 Local support groups specifically for HNC patients and partners exist at many of the recruiting sites, and information about these could be supplied regardless of whether patients explicitly ask or appear to have difficulties coping. None of the participants replied that they had received too much information when asked after treatment. Recent publications have highlighted the mismatch between the type of information provided and what patients desire.12,14 HNC patients want to be provided with more information about the impact of their treatment, whereas clinicians have been reported as concentrating too much on the specific details of the operation.12 Similarly, it has been suggested that written information about cancer and its management should reinforce and supplement information obtained from health professionals.19
The relationship between pre-treatment satisfaction with information and longitudinal outcomes It was hypothesised that lower levels of satisfaction with information would be associated with worse outcomes after treatment. It was found that patients who reported lower levels of emotional functioning and higher levels of depression were less satisfied with the information received before treatment. In line with our findings, the few published studies assessing levels of satisfaction with information, have demonstrated significant associations between satisfaction and outcomes such as HR-QoL20 and rehabilitation.21 It is interesting to note that our study found that satisfaction with information impacted more strongly on mental health rather than physical functioning, which may have important implications for reducing depression long-term.
Tailoring information to individual’s needs Written materials provided for HNC patients typically consist of generic information, often in the form of pamphlets or booklets and are designed for generic use amongst all patients with HNC. Although these materials are a cost-effective method for providing valuable information, it could be argued that their one-size fits all approach is not sensitive to the variation that exists between people in their desire for and understanding of information.22 Satisfaction with information has been shown to influence long-term outcomes after treatment. With this in mind and, as recommended by other authors,13,2 it would seem judicious to assess HNC patients needs for information on an individual basis.
C.D. Llewellyn et al. Research focusing on tailored communication interventions to change health behaviours can easily be applied to tailored information for patients undergoing treatment for cancer. Studies have shown that matching health education materials or messages to patient’s psychological characteristics (commonly coping style) have been found to be more effective in promoting behaviour change in a wide range of areas than non-tailored materials.23,24 In addition, tailored communications may also be appropriate for HNC patients post-treatment to address any functional and emotional difficulties they may have. However, more research is needed to identify the circumstances in which tailored communications are most and least effective.
Limitations The finding of a lack of information prior to treatment is perhaps not surprising as it is possible that some of the patients may have received information after completing the first questionnaire. Information is typically ‘trickled’ down over time as a result of contact with different health care professionals. Due to contact with many different professionals at different sites, it has also previously been noted that this can be a source of conflicting information and omissions.12 When collecting the data for the present study, an effort was made to only distribute questionnaires to patients on their second or third visit, despite the short-time period between diagnosis and treatment. This was for a number of reasons, but primarily to ensure that patients had been seen by a consultant a few times in order to gain an understanding of their illness and treatment. It is equally likely that the patients in the post-treatment group were skewed towards higher levels of satisfaction as they were probably feeling less ill than patients who dropped out of the study. Unfortunately, it is not known how satisfied these patients were after treatment and it is likely that these patients are at higher risk of worse outcomes than those remaining in the study.
Conclusions The main objectives of this study were to assess patients’ satisfaction with information given to them before treatment, in order to identify key areas for future improvement. In addition, the investigation into the extent to which satisfaction with information pre-treatment was predictive of longitudinal outcomes could assist with the targeting of appropriate interventions pre-treatment, with the aim of enhancing patient outcomes over time. An additional positive aspect of enhancing patient satisfaction with information, by providing a good match between the provision of information and patients’ requirements, is the promotion of partnership between the patient and the health care professional. The need for good communication between health professionals and patients is emphasised in current NHS policy25 and also serves to aid the decision making process and self-management by empowering the patient.26
HNC patients’ levels of satisfaction with information
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Acknowledgements CDL was supported by a grant received from Guy’s and St Thomas’ Charitable Foundation (R020216). Thanks to all
the patients who assisted with this project and consultants at Guy’s & St Thomas’ Hospitals, The Royal Sussex County Hospital and The Royal Marsden Hospital, in the UK for supporting this work.
Appendix A Items included in the satisfaction with cancer information profile (SCIP)a Subscale
Do you feel as if you have received enough information about:
Too much
About right
Too little
None wanted
Satisfaction with the amount and content of information
Whether the treatment has any unwanted side-effects What the risks of you experiencing side-effects are What the risks of you experiencing complications are What you should do if you experience unwanted side-effects Whether your treatment interferes with other medicines you may be taking How you may expect to feel immediately after treatment The effects of treatment on your ability to work Who to ask/where to go for possible financial support Whether you may need further treatment in the future The effect of treatment on your appearance The long-term impact of treatment on functioning (daily activities) How long you expect recovery to take How your treatment may impact on your quality of life over the next year Patient support groups for you and your partner
Score: 0
1
0
1
Overall, how would you rate the following:
Very satisfied
The usefulness of the information to you The usefulness of the information to your partner/family The amount of written information supplied The amount of verbal information supplied The timing at which you received information The detail of the information given to you How understandable the information was to you
Score: 5
Satisfaction with the type and timing of information
a
Possible subscale score: 0–14
Satisfied
Neither
Dissatisfied
Very dissatisfied
4
3
2
1
Possible subscale score: 7–35
Actual questionnaire is formatted differently. This gives a representation of the items, sections and scoring for information only.
734
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