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Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): quality of life and service use results

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posted on 2023-09-13, 09:28 authored by Valerie JenkinsValerie Jenkins, Lucy Matthews, I Solis-Trapala, H Gage, Shirley MayShirley May, P Williams, D Bloomfield, C Zammit, D Elwell-Sutton, D Betal, J Finlay, K Nicholson, M Kothari, R Santos, E Stewart, S Bell, F McKinna, M Teoh

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) / patient-initiated follow-up (PIFU) 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.

Chemotherapy patients or those with high psychological morbidity or were unable to carry out normal activities had the highest service costs. Over the 12months 68.2% participants phoned/emailed breast care nurses, 53.3% visited a hospital breast clinician.

Conclusion: The data suggest that chemotherapy patients and/or those with heightened psychological morbiditymight benefit from closer monitoring and/or supportive interventions whilst on the SSM/PIFU pathway. Reduced access due to Covid-19 could have affected service use.


Publication status

  • Published

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  • Published version


Supportive Care in Cancer




Springer Nature



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Department affiliated with

  • BSMS Publications
  • Sussex Health Outcomes Research & Education in Cancer (SHORE-C) Publications

Full text available

  • Yes

Peer reviewed?

  • Yes