How to capture patients' concerns and related changes: comparing the MYCaW questionnaire, semi-structured interview and a priority list of outcome areas

Objectives: To compare the capacity of the MYCaW questionnaire, a priority list of concerns covered by validated questionnaires, and semi-structured interviews to identify patients' personalized concerns and related changes.

Design: In a pragmatic trial on the effectiveness of energy healing as rehabilitation after colorectal cancer, a sub-sample of 31 participants completed the MYCaW questionnaire and the priority list and were interviewed before, during and after the treatment period.

Setting: Treatments were provided in healers' clinics in Denmark.

Main outcome measures: For each participant convergences and divergences of the outcome measures are identified, and strengths and weaknesses of the three methods in regard to capturing personalized concerns and changes are discussed.

Results: Three patterns were identified: (1) in the intervention groups concerns stated in MYCaW were adjusted after experience with the treatment, while concerns stated in interviews and the priority list remained stable throughout the study; (2) emotional concerns were reported more often in interviews than in MYCaW, physical concerns were predominant in MYCaW, and quality of life was marked as a primary concern most frequently on the priority list; (3) participants reported greater improvement in interviews than in MYCaW.

Conclusions: Relevant concerns in the MYCaW questionnaire seem to require that participants are well acquainted with the treatment under study. The priority list directs participants to particular areas of concerns and markings are stable. Interviews are well suited to disclose concerns regarding sensitive issues, e.g. anxiety of relapse, and experiences of subtle, non-specific changes.