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

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PurposeThe 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.MethodsA 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.ResultsThree 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.ConclusionParticipants 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.