Using a quality of life (QoL)-monitor: preliminary results of a randomized trial in Dutch patients with early breast cancer

Abstract

Purpose The diagnosis and treatment of cancer negatively affect patients’ physical, functional and psychological wellbeing. Patients’ needs for care cannot be addressed unless they are recognized by healthcare providers (HCPs). The use of quality of life (QoL) assessments with feedback to HCPs might facilitate the identification and discussion of QoL-topics. Methods 113 patients with stage I–IIIB breast cancer treated with chemotherapy were included in this randomized controlled trial. Patients were randomly allocated to receive either usual care, or usual care with an intervention consisting of a QoL-monitor assessing QoL, distress and care needs before every chemotherapy cycle visit. Patients completed questionnaires regarding QoL, illness perceptions, self-efficacy, and satisfaction with communication. From the 2nd visit onwards, patients in the intervention arm and their HCPs received a copy of the QoL overview and results were shown in patients’ medical files. Audio-recordings and patients’ self-reports were used to investigate effects on communication, patient management and patient-wellbeing. A composite score for communication was calculated by summing the number of QoL-topics discussed during each consultation. Results Use of the QoL-monitor resulted in a higher communication score (0.7 topics increase per visit, p = 0.04), especially regarding the disease-specific and psychosocial issues (p < 0.01). There were no differences in patient management, QoL, illness perceptions or distress. Patients in the experimental arm (n = 60) had higher scores on satisfaction with communication (p < 0.05). Conclusions Use of a QoL-monitor during chemotherapy in patients with early breast cancer might result in a more frequent discussion of QoL-topics, associated with high levels of patients’ satisfaction.

Perceptions of Japanese and Dutch women with early breast cancer about monitoring their quality of life

“…We have previously shown in this trial that there were some small differences in reporting the items that were discussed between observers that evaluated the content of audio-recordings of consultations and patients who completed the questionnaires. 8 Regarding clinical practice implications, this study shows that despite the small differences in reporting psychosocial aspects of their disease and patient-physician communication, Japanese and Dutch patients are committed to participate in QoL-research. Modern oncology care in Japan is moving in the direction of what applies in Western societies, namely a focus on shared-decision making, QoL, self-management, patient-reported outcomes and patient-physician communication.…”

“…The detailed study design has been previously reported. 8 In brief, this open-label, multicentre study investigated the effects of introducing a QoL-monitor on aspects of communication, medical care and patient outcomes. The primary objective of this study was to assess the extent to which QoL-topics were discussed.…”

“…The communication checklist used in the present study was an adapted version of the checklist designed by Hilarius et al 30 and was validated in an investigation by our research team. 8 It consists of 19 questions that refer to a specific symptom (e.g. pain, nausea, sleeping problems) or domain of functioning (e.g., physical and emotional functioning).…”

“…Evaluation of the QoL-monitor was carried out with a selfdeveloped questionnaire, consisting of 7 items. 8,24 All sociodemographic and clinical characteristics were obtained from patients' medical records.…”

“…Empirically, our research group and Greenhalgh et al published papers on how feedback of PRO-data to patients and physicians resulted in facilitating the discussion of quality of life (QoL) issues and heighten physicians' awareness of patients' quality of life (QoL). 8,9 Major steps in PRO-research have involved studies that show how PRO-data helped to predict patient survival, strongly reinforcing the value of monitoring PROs in the care of patients with cancer. [10][11][12][13][14] PROs in cancer care are determined by a wealth of factors, e.g., clinical, sociodemographic, and psychological factors.…”