Abstract

Background and aims It has long been suspected that the rehabilitation available to patients with primary malignant bone sarcoma (PMBS) is not always adequate and appropriate to their needs. The National Specialised Commissioning Group (NSCG) commissioned the 2012–2013 Quality Improvement Development and Innovation Scheme (QIDIS) project (rehabilitation programme) to review the current rehabilitation services available to the PMBS patient groups at all five bone sarcoma specialist centres in England. Methods The 220 participating PMBS patients were provided with questionnaires, and clinicians at the participating centres were interviewed face-to-face. Patients were analysed in groups: upper limb and lower limb, and in the subgroups major and minor surgery. The groups were compared according to their preferences for rehabilitation interventions, the additional rehabilitation post-surgery that they felt was or would have been beneficial, and by their Toronto Extremity Salvage Scores (TESS). Results Out of the 220 questionnaires provided, 136 questionnaires were returned (a 62% response rate). This study identified the lack of the following factors to be associated with PMBS patients' rehabilitation and functional outcomes: equitable access to rehabilitation treatments; suitable rehabilitation admission; allied health professional (AHP) clinical progress reviews; a reliable and equitable referral system with robust referral criteria; a rehabilitation case coordinator; a nationally accepted functional outcome measure; and patients' involvement in the management of their rehabilitation to achieve the best possible outcome. Conclusions This study identified gaps in the current rehabilitation services for PMBS patients and makes several recommendations. The authors designed a postoperative model of rehabilitation, which identifies a number of target areas that may improve current rehabilitation services and enable rehabilitation professionals to assess a PMBS patient's needs to identify the most suitable rehabilitation programme for them.

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