For many 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 clinicians might facilitate the discussion of QoL-items, resulting in improved QoL.
Women with stage I-IIIB breast cancer treated with chemotherapy were included in this randomised study. All respondents completed questionnaires regarding QoL, illness perceptions, self-efficacy, satisfaction with communication, and distress at three moments. Women in the experimental arm completed ‘the Care Notebook’ (CNB) questionnaire, assessing QoL, 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 latest QoL 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.
presented here are drawn from a collaborative study between Japan and the Netherlands. From July 2012 to May 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<.01). There were no differences in patient management, QoL, illness perceptions or distress. Patients in the experimental arm had higher scores on satisfaction with communication (p<.05). All patients perceived high self-efficacy in interacting with HCP. Patients in the intervention condition perceived the tool as user-friendly and a valuable addition to regular care.
Use of the QoL-monitor ‘The Care Notebook’ resulted in more frequent discussion of psychosocial and disease-specific issues, associated with high levels of patients’ satisfaction. However, patient management and patients’ QoL were unaffected by the intervention.
Clinical trial identification
Legal entity responsible for the study
Leiden University Medical Center.
This study was supported by a grant of the Dutch Pink Ribbon Foundation and from Pfizer, Japan.
All authors have declared no conflicts of interest.