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

Jenkins, Valerie; Matthews, L; Solis-Trapala, I; Gage, H; May, S; Williams, P; Bloomfield, D; Zammit, C; Elwell-Sutton, D; Betal, D; Finlay, J; Nicholson, K; Kothari, M; Santos, R; Stewart, E; Bell, S; McKinna, F; Teoh, M

Authors

Valerie Jenkins

L Matthews

H Gage

S 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



Abstract

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 12 months, 68.2% participants phoned/emailed breast care nurses, and 53.3% visited a hospital breast clinician.

Conclusion
The data suggest that chemotherapy patients and/or those with heightened psychological morbidity might 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.

Citation

Jenkins, V., Matthews, L., Solis-Trapala, I., Gage, H., May, S., Williams, P., …Teoh, M. (2023). Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): quality of life and service use results. Supportive Care in Cancer, 31(10), Article 570. https://doi.org/10.1007/s00520-023-08002-z

Journal Article Type Article
Acceptance Date Aug 16, 2023
Online Publication Date Sep 12, 2023
Publication Date Oct 1, 2023
Deposit Date Sep 20, 2023
Publicly Available Date Sep 20, 2023
Journal Supportive Care in Cancer
Print ISSN 0941-4355
Electronic ISSN 1433-7339
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 31
Issue 10
Article Number 570
DOI https://doi.org/10.1007/s00520-023-08002-z
Keywords Breast cancer, Psychological morbidity, Supported self-management, Patient experience, Quality of survivorship, Quality of life

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Publisher Licence URL
https://creativecommons.org/licenses/by/4.0/

Copyright Statement
This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.






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