Abstract
PRAGMATIC Main Paper: “Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): Quality of Life and Service Use Results”These data are csv files of responses from 110 patients together with tables and figures illustrating results. Patients entered demographic details at baseline and completed five quality of life questionnaires and a service use questionnaire over 5 time points – baseline, 3, 6, 9 and 12 months.The quality of life questionnaires were FACT-B, PRRS, GSE, GHQ-12 and EQ-5D-5L.Patients were offered the option of completing a paper questionnaire booklet or completing online at each time point. You can also view pdfs of the baseline questionnaire booklet and the three-month service use questionnaire.Purpose: To describe trends and explore factors associated with quality of life (QoL) and psychological morbidity and assess Breast Cancer (BC) health service use over a 12-month period for patients joining the supported self-management (SSM) pathway.Methods: Participants completed questionnaires at baseline, 3, 6, 9 and 12 months that measured QoL (FACT-B, EQ 5D-5L), self-efficacy (GSE), psychological morbidity (GHQ-12), roles and responsibilities (PRRS) and service use (cost diary).Results: 99/110 patients completed all timepoints, 32% (35/110) had received chemotherapy. The chemotherapy group had poorer QoL; FACT-B total score mean differences were 8.53 (95% CI: 3.42 to 13.64), 5.38 (95% CI: 0.17 to 10.58) and 8.00 (95% CI: 2.76 to 13.24) at 6, 9 and 12 months, respectively. The odds of psychological morbidity (GHQ12 >4) were 5.5-fold greater for those treated with chemotherapy. Financial and caring burdens (PRRS) were worse for this group (mean difference in change at 9 months 3.25 (95% CI: 0.42 to 6.07). GSE and GHQ-12 scores impacted FACT-B total scores, indicating QoL decline for those with high baseline psychological morbidity. Participants who had chemotherapy or high psychological morbidity or were unable to carry out normal activities and had highest service costs. Over the 12months 68.2% participants phoned/emailed breast care nurses, 53.3% visited a hospital breast clinician.Conclusion: The SSM pathway was suitable for most patients, but those who had received chemotherapy and/or had heightened psychological morbidity may benefit from closer monitoring and/or supportive interventions. Reduced access due to Covid-19 could have affected service use