Effect of an integrated support programme on the concerns and wellbeing of women with breast cancer: A national service evaluation

Article Outline

• Abstract
• 1. Introduction
• 2. Materials & methods
  • 2.1. Study design
  • 2.2. Measure Yourself Concerns and Wellbeing (MyCaW) questionnaire
  • 2.3. Study population and data collection
  • 2.4. Data analysis
  • 2.5. Quantitative data
  • 2.6. Qualitative data
• 3. Results
  • 3.1. Response rates
  • 3.2. Main concerns
  • 3.3. Concern and wellbeing scores
  • 3.4. Other things affecting health
  • 3.5. Most important aspects of The Haven
  • 3.6. Therapies used to address concerns
• 4. Discussion
  • 4.1. Limitations of study
• 5. Conclusions
• Conflict of interest
  • Disclosures
• Acknowledgements
• References
• Copyright

Abstract 

Purpose

To carry out a national service evaluation of the integrated cancer support programme offered by The Haven using the Measure Yourself Concerns and Wellbeing (MYCaW) outcome questionnaire.

Methods

Breast cancer survivors who visited one of three Haven centres in the UK completed the MYCaW questionnaire before and after 6 one-hour complementary therapy sessions.

Results

Statistically significant decreases in mean baseline scores (indicating improvement) for concerns and wellbeing were observed after treatment: concern 1 (5.09 ± 1.04 vs 3.17 ± 1.60, p < 0.0001, n = 402), concern 2 (4.69 ± 1.08 vs 3.08 ± 1.56, p < 0.0001, n = 372), and wellbeing (3.30 ± 1.41 vs 2.63 ± 1.28, p < 0.0001, n = 402). The therapies most commonly used were acupuncture, nutrition, massage and aromatherapy, shiatsu, counselling and reflexology. After therapy, 91% of reported scores (n = 328) rated the concern as being a little better, much better or gone.

Conclusions

These findings suggest that women with breast cancer find the Haven integrated support programme valuable for addressing their main concerns and improving their feeling of wellbeing.

Keywords: Breast cancer, MYCaW, Concerns, Wellbeing, Complementary therapies

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1. Introduction 

Patients with cancer are increasingly turning to complementary medicine, including biologically-based e.g. herbal medicine and nutrition, energy, touch and mind-body therapies, to use alongside standard cancer treatments.¹, ², ³ Furthermore, women diagnosed with breast cancer have been reported to use complementary therapies more frequently than individuals diagnosed with other cancers, up to 80% use being reported in a study by Boon et al.⁴ The main reasons for this use include the belief that they may boost the immune system, reduce disease symptoms and side effects of cancer treatment, redress emotional imbalances resulting from diagnosis and treatment, and/or increase the efficacy of standard cancer treatments.

Evidence is accumulating to support the beneficial effects of a range of different complementary therapies on physical and emotional problems experienced by breast cancer patients. A recent systematic review of the use of acupoint stimulation for the management of therapy-related adverse events in patients with breast cancer showed a beneficial effect of acupressure on the P6 acupoint for chemotherapy-induced nausea and vomiting.⁵ Furthermore, quality of life, mood state and/or wellbeing have been demonstrated to be significantly improved in randomised controlled trials of breast cancer survivors treated with mindfulness-based stress reduction, reflexology, scalp massage and Medical Qigong.⁶, ⁷, ⁸ Medical Qigong also significantly reduced fatigue and inflammation.⁸

The combination of complementary therapies with standard cancer treatment has been termed integrative oncology/medicine. Such an approach is not widely available in the UK through the NHS, and is more commonly provided by charitable organisations. The Haven is a charity that offers an integrated programme consisting of information, emotional support, and complementary therapies to help people through the experience of breast cancer. It has three Haven centres in London, Leeds and Hereford, and an outreach programme, The Haven at Home, to extend these support services to anyone in the UK affected by breast cancer. Since 2004, The Haven has routinely employed the Measure Yourself Concerns and Wellbeing (MYCaW) questionnaire to evaluate its support programme. Analysis of data collected between 2004 and 2006 from the Haven centres in London and Hereford (n = 255) showed that psychological and emotional concerns predominated in women diagnosed with breast cancer. Furthermore, the mean changes in scores for their two main self-selected concerns and for wellbeing suggested highly statistically significant improvements (p < 0.0005) post-intervention compared to baseline.⁹, ¹⁰

Since the findings of this study were published, a new Haven centre was opened in 2008 in Leeds. To investigate whether the Visitors (breast cancer patients) to all three Haven centres consistently perceived improvement in their main concerns and wellbeing after receiving the integrated Haven support programme, a service evaluation was conducted during the period April 2007 to September 2009 using the self-report MYCaW questionnaire. Furthermore, feedback was also collected from Visitors on the type and effectiveness of therapies used to address their concerns, an aspect of the Haven programme that was not explored in the earlier clinical evaluation. This information will be used to tailor the support programme provided by the Haven centres to the needs of women diagnosed with breast cancer.

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2. Materials & methods 

2.1. Study design 

This study was an internal service evaluation of women with breast cancer who attended the Haven centres in London, Leeds and Hereford. Informed consent was given by the Visitors for their personal data to be held and processed (in accordance with the Data Protection Act), and for the collection of their feedback of treatment programmes they received. As this was not a research project, it was not subject to research ethical approval.

2.2. Measure Yourself Concerns and Wellbeing (MyCaW) questionnaire 

MYCaW is a short, patient-centred outcome questionnaire suitable for measuring the effects of cancer support services involving complementary therapies. Based upon the validated MYMOP questionnaire, it was developed over a 6-year period with repeated adaptation, piloting and monitoring.⁹ Paterson et al have demonstrated good face validity and content validity; however, formal validation of construct and concurrent validity of MYCaW remains to be carried out.⁹

The questionnaire is completed with some guidance on the first occasion, and then subsequently self-completed. Respondents are initially asked to write down one or two concerns or problems that they need help with, and then to rate them, and their general feeling of wellbeing at the time, on a score of 1 (not bothering me at all) to 6 (bothers me greatly). On the follow-up questionnaire, they are asked to rate again these same concerns or problems, and their general feeling of wellbeing, without seeing their original scores. In addition, they are asked whether there are other things in their lives that may be affecting their health, and what they considered were the most important aspects of their treatment at the Haven.

On the MYCaW follow-up form used between April 2007 and March 2009, the respondents were additionally asked to name two therapies that made each of the two main concerns better or worse, and to rate the effect of each therapy on a 7-point scale ranging from “worst ever” to “gone”. These adaptations were included with the permission of Dr Charlotte Paterson.⁹ In response to user feedback, these questions were simplified on the follow-up forms used from April to September 2009. Respondents were asked to name which therapy/therapies had helped concerns 1 and 2, but not to rate them, and were invited to make any other comments.

2.3. Study population and data collection 

All women with breast cancer, before, after or at various stages of cancer treatment, who self-referred to The Haven centres in London and Hereford during the period April 2007 to September 2009, and the Leeds centre (which opened in Oct 2008) from October 2008 to September 2009, were studied. The Visitors to the Haven centres were 83–98% white, reflecting the ethnicity of the local populations, with 30–51% aged under 50 years, and 45–63% aged 50–69 years. As this was a service evaluation, additional socio-demographic and disease/treatment data was not collected. Previously obtained information (unpublished) regarding the disease characteristics of Visitors has shown that just under one-third had been diagnosed with stages 0 and I, two-thirds with stages II and III, and 3% with stage IV breast cancer.

The Haven programme consists of support, information and a range of different complementary therapies to help people through the experience of breast cancer. A personalised programme of care, involving individual therapy assessments and reviews conducted by experienced specialist nurses and therapists, is agreed in consultation with each individual based upon the concerns that they feel need to be addressed. Therapies available include nutrition, counselling, touch therapies, mind-body and medical herbalism, plus various groups and classes.

The baseline MYCaW questionnaire was administered during the initial therapy assessment (before any therapies were received); the follow-up form during a review appointment following 6 h/units of individual therapies. This time point was chosen because it represents the average length of therapy time received by Visitors to the Haven centres. The programme is flexible so that it can be fitted in around courses of medical treatment; the time taken for Visitors to complete the therapies varied between 3 and 12 months.

2.4. Data analysis 

The quantitative MYCaW scores and qualitative data from the three Haven centres were analysed separately, and as combined data.

2.5. Quantitative data 

The baseline and post-treatment scores for concern 1, concern 2 and wellbeing were compared using the Wilcoxon signed rank test with a cut-off value for statistical significance of p = 0.05 (two-tailed). This non-parametric statistical test was used as the data may be considered ordinal rather than interval. Respondents were included in the analysis if they had scored both concern 1 and wellbeing on both baseline and follow-up MYCaW forms (the second concern was considered optional). Where scores were missing for concern 1 or wellbeing at follow-up (n = 7), a standard procedure of carrying forward the previous value was employed.¹¹ This gives a conservative estimate assuming no change from the previous score. The mean change in scores for concern 1, concern 2 and wellbeing were also calculated with 95% confidence intervals.

2.6. Qualitative data 

The MYCaW concerns 1 and 2, and answers to the questions “other things affecting your health?” and “what has been most important for you?” were coded by one of the authors (JH) using the framework of categories described by Polley et al.¹² This framework was developed specifically to aid analysis of qualitative data collected using the MYCaW questionnaire from patients with cancer (including Visitors to the London and Hereford Haven centres), with validation of content and language by a service-user focus group and an inter-rater reliability score of 0.85.¹² The coding process involved comparison of the responses received with the categories listed in the framework, and allocation of the most appropriate code; the answers received in the present service evaluation generally fitted well into this framework.

The frequency of responses in the different categories and supercategories were then calculated for the concerns 1 and 2 combined, and for the two open-ended questions.

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3. Results 

3.1. Response rates 

A total of 1527 (London, n = 963; Hereford, n = 210; Leeds, n = 354) baseline MYCaW forms were completed by Visitors to the three Haven centres. The overall response rate for the follow-up forms was 27% (n = 411) with higher response rates in London (28%) and Hereford (34%) than in Leeds (20%). Nine forms were excluded because of missing data or parts of the form filled out incorrectly. This resulted in eligible baseline and follow-up data for a total of 402 women with breast cancer.

The reasons for MYCaW follow-up forms not being completed at the London Haven were investigated. The main reason (43%) was that Visitors had left the treatment programme before receiving 6 units of individual therapies (the cut-off point chosen for re-evaluation) or a review, whilst a further 27% were still undergoing their treatment programme when the data was analysed. Other reasons for not completing the follow-up form were that, having completed treatment, a review appointment was due (11%), or a review had been carried out, but the form was not completed (17%). In addition, 2% of the Visitors who had completed the initial MYCaW form had died before the follow-up was due.

3.2. Main concerns 

During their first assessment, respondents were asked to list up to two main concerns with which they would like help. A total of 2911 concerns were recorded from 1524 Visitors to the three Haven centres (3 of the 1527 Visitors did not state their concerns); these were subdivided into four supercategories using a published framework.¹² The highest proportion of concerns (48%) were psychological and emotional, whilst physical, wellbeing and hospital cancer treatment concerns constituted 23%, 17% and 11%, respectively. Psychological and emotional concerns predominated at each of the Haven centres, although physical concerns were higher in Hereford (31%), and wellbeing (12%) and hospital (7%) concerns lower in Leeds than in the combined data for all centres.

The four supercategories were further subdivided into different subcategories. The highest scoring subcategories were fear and anxiety (psychological and emotional), physical problems and poor energy (physical), mind/body (wellbeing) and side effects of chemotherapy and cancer treatment generally (hospital cancer treatment) (Table 1).

Table 1. Supercategories of main concerns: highest scoring subcategories.

3.3. Concern and wellbeing scores 

Highly significant decreases in mean baseline scores (indicating improvement) for concerns and wellbeing were observed after treatment for the pooled data from the three Haven centres (Table 2, Fig. 1). For concern 1, the baseline score of 5.09 ± 1.04 (mean ± SD) decreased to 3.17 ± 1.60 (p < 0.0001, n = 402), for concern 2, from 4.69 ± 1.08 to 3.08 ± 1.56 (p < 0.0001, n = 372), and for wellbeing, from 3.30 ± 1.41 to 2.63 ± 1.28 (p < 0.0001, n = 402). The mean change in scores for concern 1, concern 2 and wellbeing were 1.92 (95% CI, 1.76–2.08), 1.60 (95% CI, 1.42–1.77), and 0.67 (95% CI, 0.51–0.82), respectively. The decrease in mean scores was also highly significant for each of the Haven centres analysed individually (Table 2).

Table 2. MyCaW concerns and wellbeing scores for the Haven centres, combined and individually.

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• Fig. 1 

  Concern and wellbeing scores, before and after treatment, for Visitors to the London, Hereford and Leeds Haven centres combined. ∗ Differences between baseline and post-treatment were statistically significant for concern 1, p < 0.0001, concern 2, p < 0.0001, and wellbeing, p < 0.0001.

The changes to concerns 1 and 2 were also likely to be clinically significant to the individuals concerned.¹³, ¹⁴

3.4. Other things affecting health 

A total of 251 of the 402 respondents identified other things affecting their health. The responses given were subdivided into six supercategories using an analytic framework that included both positive and negative influences on health¹² (Fig. 2). Half of the responses came under the supercategories of “awareness of wellbeing” (26%) and “health issues” (24%), 16% related to their work situation and 15% to social support. The highest scoring subcategories included one positive (an improved awareness of wellbeing), and three negative categories (family, work and cancer-related problems), which together accounted for almost half of the responses.

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• Fig. 2 

  Supercategories of other factors affecting health.

Similar results to the pooled data were observed for each of the Haven centres.

3.5. Most important aspects of The Haven 

A total of 365 respondents provided information on what they felt were the most important aspects of The Haven to them personally. The responses were subdivided into 10 categories, 9 of which were of a generally positive nature and one for negative feedback. An additional non-specific category covered any aspects that were not included in the other 10 categories.¹² The most frequently cited categories were of the appreciation of the Haven and its resources (27%), individual and group therapies (22%), and support and understanding received (18%) (Fig. 3). These categories were also prominent in the responses from each of the individual Haven centres, but more Visitors to the Hereford and Leeds centres listed support and understanding received (30%) than appreciation of the Haven and its resources (19 and 12%, respectively).

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• Fig. 3 

  Important aspects of The Haven for its Visitors.

Only one negative comment was received which related to the cancellation of appointments and difficulties getting appointments with therapists.

3.6. Therapies used to address concerns 

A total of 334 respondents (London, n = 233; Hereford, n = 47; Leeds, n = 54) provided feedback on the therapies they had received to address their concerns. Of the range of 27 different therapies offered as part of the Haven programme, the six therapies most commonly employed overall, in order of frequency, were acupuncture, nutrition, massage and aromatherapy, shiatsu, counselling and reflexology. These therapies were also the most frequently used at the individual Haven centres. In addition, hypnotherapy was frequently chosen by Visitors to the Leeds Haven, but not by those at the other two Haven centres. The therapies used most frequently to address each of the four main supercategories of concerns experienced by the respondents are shown in Table 3.

Table 3. Most frequently used therapies to treat concerns defined by supercategories.

On the first version of the follow-up form (used from April 2007 to March 2009), Visitors were asked to rate the impact of up to two therapies they had received on each of their stated concerns on a scale from one (concern is at its worst ever) to seven (concern has gone). A total of 328 respondents completed this part of the form, giving a total of 995 scores. More than half of the scores (55%) rated the concern as being much better, 33% a little better and 3% gone. Only 0.8% rated the concern as being a little or much worse after treatment, and 8% as unchanged.

Additional data relating to the usefulness of therapies to address Visitor’s concerns was also collected using a feedback form completed by 276 Visitors to the three Haven centres at the end of their course of individual therapies, from June 2009 onwards. In contrast to the MYCaW data, the responses cited predominately physical problems, particularly nutrition and hot flushes/night sweats, accounting for 51% of the issues that were of concern to Visitors. In addition, 39% of the issue were psychological in nature, with fear and anxiety the most frequently listed. The 6 most commonly used therapies were the same as described above, although nutrition was more frequently chosen than acupuncture, reflecting the increase in nutritional problems. When asked to rate how much a particular course of therapy helped with the problems they had listed as “very much”, “moderately” or “not at all”, 86% of respondents (n = 258) stated that the therapy that they had received had been very helpful. Furthermore, 89% believed the therapy that they had received was essential for their recovery from breast cancer, and over 99% (n = 206) indicated that they would recommend the therapy to other women with breast cancer.

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4. Discussion 

This service evaluation has measured the effects of an integrated cancer support programme offered by The Haven at its three day centres on the main concerns and wellbeing of breast cancer survivors, as reported by them. This is a larger follow-up of an initial service evaluation carried out at the two Haven centres in London and Hereford in 2004–2006, which used the patient-centred MYCaW questionnaire to provide both qualitative and quantitative data to describe and measure individualised experiences and outcomes.¹⁰ In common with the earlier study, the main concerns of Visitors to each of the Haven centres were identified as being predominately psychological and emotional, followed by concerns related to physical, wellbeing and hospital cancer treatment issues. In both studies, a highly statistically significant improvement in mean scores for concerns 1, concern 2 and wellbeing was observed after a mean of 6 h of therapy. Previous studies with similar 7-point scales indicate that a change of 0.7–1.0 is likely to be clinically significant, suggesting that the changes in main concerns reported here are likely to be highly clinically significant to the individuals concerned.¹³, ¹⁴ Thus a total of 657 breast cancer survivors (earlier study, n = 255; present study, n = 402), in three different locations in the UK have reported, via the MYCaW questionnaire, that they find the Haven programme beneficial for addressing their major concerns and wellbeing. Furthermore, the similarity between the findings at the Leeds Haven centre with those (both previous and current) of the other two Haven centres suggests that the Haven programme can be successfully transferred to different locations around the country with consistent results.

The individual therapies most frequently used to address the womens’ concerns were acupuncture, nutrition, massage and aromatherapy, shiatsu, counselling and reflexology. However, it is likely that factors such as the choice of therapy by Visitors, recommendations from Haven staff based on research evidence, and a therapy’s availability may all be factors contributing to its frequency of use. The impact of the therapies on concerns was less than might have been anticipated from the highly significant change in concern scores, with 55% of scores rating the concern as much better, and 33% rating the concern as a little better. This may be partially explained by the negative effects of family, work and cancer-related issues on the respondents’ health, as reported in the open question about other factors affecting health in the follow-up questionnaire.¹² There is also the possibility that the therapy chosen was not the most effective to meet a specific need, or that 6 sessions were insufficient to address their concerns. Individuals may vary in their rate of response to a therapy and the length of treatment time needed to gain beneficial effects. In particular, psychological and emotional issues are often complex and may require a more long-term approach to treatment. The wording of one of the questions on the follow-up form may also be of relevance. The respondents were asked on the first version of the follow-up form to rate up to 2 therapies, for each concern, on a scale that went from “worst ever” to “gone”. Thus, for any particular concern there could conceivably have been one therapy that made the problem much better, and a second that had only a small beneficial effect. Since the scores were pooled, this may have had the effect of diluting out the degree of positive effects obtained. With hindsight, it may therefore have been better to have asked the respondent which therapy was the most effective for their concern, rather than which therapies made the problem better or worse.

In support of the possibility that the findings represent an underestimate of the effects of the therapies given to treat Visitors’ concerns, feedback forms completed at the end of a Visitor’s course of individual therapy showed that 86% of respondents felt that the therapy that they had received had been very helpful for their problems. Furthermore, 89% believed the therapy that they had received was essential for their recovery from breast cancer. The therapies most commonly used were the same as for the MYCaW evaluation, although nutrition was more frequently chosen than acupuncture, reflecting an increase in nutritional problems.

The importance of psychological support for cancer survivors was recognized in the government’s Cancer Reform Strategy, and led to the launch of the National Cancer Survivorship Initiative (NCSI).¹⁵ To ensure that cancer survivors get the care and support they need, it is essential to ask individuals in this situation what type of support is important to them. The MYCaW questionnaire is a useful tool that allows such information to be collected, providing a more meaningful assessment of the effect of complementary therapies on patients’ concerns and wellbeing than quantitative analysis alone. The main responses to the open question “what is most important to you about The Haven?” were appreciation of the Haven and its resources, individual and group therapies, and support and understanding received. The collection of such information is important, not only for The Haven, but for all cancer support organisations so that they can tailor their programmes of care to meet the needs of cancer survivors who come to them for help.

4.1. Limitations of study 

There are some limitations of this study that may affect the validity of the results. Firstly, only 27% of the Visitors across the Haven centres completed a follow-up form to provide outcome data. This was somewhat lower than the response rates obtained in studies at other cancer support centres, which ranged from 38 to 62%.⁹, ¹⁰, ¹⁶, ¹⁷ The predominant reason for this low response rate was that almost half of the Visitors completed less than 6 therapy sessions (the threshold set for feedback collection), the explanations given for which included being too far to travel, work and/or family commitments, time restrictions and ill-health. It is possible that this may have led to a bias in the results, if those satisfied with the support programme were more highly represented in the follow-up group. However, although the follow-up response rate was much lower than in the previous study,¹⁰ the findings were very similar suggesting that the data may have been representative of the Visitors who attend the Haven centres.

Secondly, the study is a service evaluation, not a research project, and consequently has no control group. The significant improvements observed in this (and the previous) study may therefore be related to other factors apart from the support programme they received, such as the completion of side effect-causing medical treatment, a positive attitude to the benefits of complementary therapies, socio-demographic characteristics, stage of disease etc. The Visitors to the Haven centres refer themselves and so may be aware of the potential of complementary therapies, and/or to have experienced them in another setting, making them a biased population.

Thirdly, since the study is limited to the Visitors to the Haven centres it might be argued that these findings are not necessarily relevant to (breast) cancer survivors receiving complementary therapies in general. However, patients with various cancers (predominately breast cancer) attending a residential UK cancer support centre showed similar changes in scores to those of Visitors to The Haven, although there were some differences in the types of concerns described.¹⁰ Furthermore, evaluation of support programmes in other cancer support centres, and in a study of the effect of healing on cancer patients using MYCaW reported a similar degree of improvement in patients’ main concerns and wellbeing.⁹, ¹⁶, ¹⁷

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5. Conclusions 

The findings of this service evaluation suggest that women living with breast cancer in various parts of the UK find the Haven integrated support programme valuable for addressing their main concerns and improving their feeling of wellbeing. Randomised controlled trials are needed to confirm these findings at this and other cancer support centres.

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Conflict of interest 

None.

Disclosures 

None.

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Acknowledgements 

We thank all the Haven staff and Visitors who took part in this study, and Dr Marie Polley, University of Westminster for critical review of the manuscript.

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