The development of a new Quality of Life measure for Japanese female breast cancer patients with lymphoedema

The main research question is to investigate how perceptions of information provision are associated with the Quality of Life. Three studies were conducted, with participants being recruited from self-help groups in Japan. First a symptom checklist and physical discomfort scale in lymphoedema was developed. Test-retest reliability and the internal structure of the scale were investigated by a prospective study. Second, a qualitative study was conducted in order to explore perceptions of lymphoedema and how they were formed in the society. A dual analytic approach was applied to primary transcripts: thematic analysis and conceptual analysis using symbolic interactionism. Based on the findings of the conceptual analysis, a psycho-social discomfort scale was developed. Psychometric properties were investigated. The WHO QoL-BREF Japanese version was used to check criterion validity in a cross-sectional survey study. Test-retest reliabilities of the check list and physical discomfort scale were acceptable. Perceptions of information provision at diagnosis and loss of strength were associated with reported discomfort. The qualitative analysis revealed cognitive and emotional processes in breast cancer and lymphoedema. Experiences of lymphoedema were often interpreted in breast cancer contexts. The third study showed that the "breast cancer" subscales of the psycho-social discomfort scale had good internal consistency, and good convergent and divergent validity. However, the lymphoedema subscales had a weak internal structure. ‘Perceptions of information provision’ were associated with the ‘resources to live with breast cancer’ subscale. In conclusion, the validity of the symptom checklist, physical discomfort scales and breast cancer subscales were acceptable. Since the lymphoedema subscales had a weak internal structure, further work is needed in the development of the measure.