Effect of an integrated support programme on the concerns and wellbeing of women with breast cancer: A national service evaluation
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.
Section snippets
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.
Measure Yourself Concerns and Wellbeing (MyCaW) questionnaire
MYCaW is a short, patient-centred outcome questionnaire
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
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
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.
Conflict of interest
None.
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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What can a third sector organisation provide for people with breast cancer that public health services cannot? Developing support services in response to service evaluation
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2016, Complementary Therapies in Clinical PracticeHow to capture patients' concerns and related changes: Comparing the MYCaW questionnaire, semi-structured interview and a priority list of outcome areas
2014, Complementary Therapies in MedicineCitation Excerpt :A patient-centered outcome questionnaire, it aims to encompass aims, values and treatment effects prioritized by individuals, and to enable each individual to provide an unambiguous assessment of change over time.10,11 The MYCaW questionnaire has been used in several cancer support centers in studies without control groups and as a tool for reporting and scoring concerns to be responded to by the treatment.10–16 MYCaW allows participants to formulate concerns in their own words for which they hope the treatment can provide relief.