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.