Exploring patient experience of rehabilitation within the surgical pathway for lower limb soft tissue sarcoma in the UK: A single-centre study

Dean, Lucy; Cowan-Dickie, Siobhan; Strauss, Dirk C.; Humphrey, Pauline; Cramp, Fiona

Abstract

The primary treatment for localised soft tissue sarcoma (STS) is surgery. Surgery for lower limb sarcoma is associated with poorer functional outcomes than other anatomical sites. Rehabilitation is essential, yet provision is not standardised, and patient experience of current service delivery is unknown. This study therefore aimed to explore patients’ experiences of rehabilitation in the surgical pathway for lower limb STS at a United Kingdom (UK) specialist centre.

Methods
A qualitative, descriptive phenomenological study was undertaken to explore patients’ rehabilitation experiences. Eight patients who had undergone lower limb STS surgery at a specialist centre were purposively sampled. Data were collected through semi-structured interviews and analysed using thematic analysis.

Results
Three main themes were identified: (1) Accessing the right services at the right time. Participants described good access to inpatient rehabilitation post-operatively but delays and challenges in accessing local services affected continuity of care. Rehabilitation gaps pre-operatively, and in facilitating return to meaningful activities, were described; (2) “Communication is key” — providing knowledge and support to navigate uncertainty. Unclear and unrealistic expectations of recovery were challenging. Communication was key to patients feeling supported and facilitating access to rehabilitation; (3) The importance of person-centred rehabilitation. Collaborative, person-centred rehabilitation optimised motivation and engagement.

Conclusion
Participants experienced good access to inpatient rehabilitation post-operatively. In contrast, gaps and delays at other timepoints led to missed opportunities to support preparation for, and recovery from, surgery. A multidisciplinary approach across settings from diagnosis, to deliver person-centred rehabilitation, may improve access, expectation management and continuity of care.

• Journal Article Type: Article
• Acceptance Date: Jan 22, 2025
• Online Publication Date: Feb 1, 2025
• Publication Date: Feb 1, 2025
• Deposit Date: Feb 3, 2025
• Publicly Available Date: Feb 4, 2025
• Journal: Supportive Care in Cancer
• Print ISSN: 0941-4355
• Electronic ISSN: 1433-7339
• Publisher: Springer (part of Springer Nature)
• Peer Reviewed: Peer Reviewed
• Volume: 33
• Issue: 2
• Article Number: 139
• DOI: https://doi.org/10.1007/s00520-025-09199-x
• Keywords: Patient experience, Sarcoma, Lower limb, Rehabilitation
• Public URL: https://uwe-repository.worktribe.com/output/13714044
• Additional Information: Received: 26 February 2024; Accepted: 22 January 2025; First Online: 1 February 2025; : ; : Ethical approvals were granted by the Royal Marsden Hospital’s Service Evaluation Committee (SE1243) and the University of the West of England Research Ethics Committee (HAS.22.12.043).; : Informed consent was gained from all the participants as outlined in the manuscript.; : Informed consent was gained for the publication of anonymised data, including quotes taken from semi-structured interviews.; : The authors declare no competing interests.