Monitoring quality of life in Dutch women with breast cancer: The Care Notebook study

Abstract

Background: Formany patients the diagnosis and treatment of cancer are associated with negative consequences for their physical, psychological and social well‐being. However, patients' needs for care cannot be addressed unless they are recognized by healthcare providers (HCP). The use of quality of life (QoL) assessments with feedback to cliniciansmight facilitate the discussion of QoL‐items, resulting in improved QoL. Methods:Women with stage I‐IIIB breast cancer treated with chemotherapy were included in this randomised study. All respondents completed questionnaires regardingQoL, illness perceptions, self‐efficacy, satisfaction with communication, and distress at threemoments. Women in the experimental arm completed 'the CareNotebook' (CNB) questionnaire, assessingQoL, distress and care needs before every hospital visit. Results were automatically stored and presented in patients'medical files. From the 2nd visit onwards, patients and HCPs received a copy of the latestQoL overview before the consultation. Women in the control arm received care as usual. Audio‐recordings were used to investigate effects on communication and patient management. Results: presented here are drawn froma collaborative study between Japan and the Netherlands. From July 2012 toMay 2016, 60 out of 113 Dutch patients were randomized to the experimental arm. In the experimental condition,more QoL‐items 'were discussed (0.7 items each visit, p=.04), compared with the control condition, especially regarding disease‐specific and psychosocial issues (p