Measure Yourself Concerns and Wellbeing (MYCaW): An individualised questionnaire for evaluating outcome in cancer support care that includes complementary therapies

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Summary

Background and aim

Descriptive and experimental evaluations of cancer support services require an outcome questionnaire that is valid, responsive to change, feasible and interpretable. This paper describes the development of such a tool.

Development of the questionnaire

A validated individualised measure MYMOP was adapted and piloted in two centres, and a multidisciplinary research team used this experience to develop the new questionnaire, Measure Yourself Concerns and Wellbeing (MYCaW). MYCaW requires participants to nominate one or two concerns and, using a seven-point scale, to score these concerns and their general feeling of wellbeing. The follow-up questionnaire also includes the open question ‘Reflecting on your time with this Centre, what were the most important aspects for you?’

Investigating validity

During 2003 the two centres administered MYCaW to all new patients, before and after a course of treatment. Patients nominated concerns that spanned physical, emotional and psychosocial concerns. For patients completing follow-up questionnaires (n = 254 at the Cavendish Centre and n = 267 at the Bristol Cancer Help Centre), the mean change (S.D.) for the first concern score was 2.9 (1.63) and 1.91 (1.58) for the second concern score 2.5 (1.73)/1.77 (1.96) and for the wellbeing score 1.4 (1.8)/0.61 (1.52), respectively. The open question collected valuable extra data.

Discussion

MYCaW is a questionnaire that is appropriate for the service offered, acceptable to patients, practitioners and researchers, and is responsive to change. Further validation work is planned.

Section snippets

Background

Cancer support services have developed in response to the needs of people with cancer at all stages of their illness. They provide individualised patient-centred care that addresses spiritual, emotional, psychological and physical needs, and they often include complementary therapies and self-management techniques. In the UK, these services are provided in a number of different settings, which include multidisciplinary, independent clinic-based provision within NHS hospital care; hospice-based

Early pilots

The first work was done independently in two centres in the UK, The Cavendish Centre for Cancer Care in Sheffield and The Bristol Cancer Help Centre. Both centres made some changes to the MYMOP questionnaire and piloted their versions. The conclusions from these two projects were drawn together within a wider multidisciplinary team and led to the new questionnaire and further validation work. We will briefly describe the MYMOP questionnaire and these early pilots, before describing the new

Method

The MYCaW instrument has now been administered to patients and carers in each centre on a routine basis. This paper reports the findings from these exercises. At the Cavendish Centre for Cancer Care, the MYCaW questionnaire was used for the two years 2002 and 2003, with all new patients and carers. It was administered by the assessor towards the end of the first assessment interview and repeated at the follow-up assessment after the course of therapy. At the Bristol Cancer Help Centre MYCaW was

Discussion

The iterative process of several cycles of piloting, discussion and redesign has resulted in a questionnaire that is appropriate for the service offered, acceptable to patients, practitioners and researchers, and responsive to change. The goal of MYCaW as an individualised outcome tool is to give the patients a voice in assessing the impact of their care. This has been achieved by building on a previously validated patient-generated questionnaire and adding an open-ended question ‘Reflecting on

Acknowledgements

We are grateful to all the members of the MYCaW research team, including John Brazier, Jane Needham, Elaine Weatherley-Jones, Tony Webber and Jane Wilkinson. Our thanks also to staff and patients at the Cancer Support Centres that have used MYCaW and have provided feedback and encouragement.

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Research sponsor: There has been no external funding for this research. The work was supported by the MRC Health Services Research Collaboration.

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