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

Abstract

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. 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. 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.