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PURPOSE: To explain the needs for rehabilitation of patients with bone sarcoma before and after surgical resection and reconstruction with megaprosthesis. MATERIALS AND METHODS: We performed a qualitative study following constructivist grounded theory principles. We purposefully recruited rich cases. Data were collected using semi-structured interviews and analyzed with grounded theory data-analysis. Initial, focused, and theoretical coding were first performed independently by two authors and followed by discussion in consensus meetings with all authors. Ultimately, a conceptual model was created. RESULTS: Thirteen participants were interviewed between March and May 2023. Seven theoretical codes were found. The first is the need to achieve a new normal, being able to function with their medical history and megaprosthesis in a new normal life. Two key values patients needed were being understood and being prepared. Four important conditions that patients needed were: optimal conditions for rehabilitation, a trustworthy physical therapist, a clear closure from rehabilitation, and access to expertise in the hospital. The core category was achieving a new normal. CONCLUSIONS: Patients with bone sarcoma need rehabilitation to achieve a new normal life. With the understanding of needs regarding rehabilitation now gained, the care for patients with bone sarcoma should be better tailored.
Bone sarcoma is a life threatening, disabling disease requiring intensive medical treatment.The goal of rehabilitation should be to help patients achieve a new normal.Rehabilitation professionals will need to acquire the additional knowledge and relevant skills to treat patients.Rehabilitation professionals should prepare the patients by providing clear and uniform information about their rehabilitation.
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INTRODUCTION: Sarcomas are rare tumours with considerable heterogeneity. Early and accurate diagnosis is important to optimise patient outcomes in terms of local disease control, overall survival (OS) and health-related quality of life (HRQoL). Time to diagnosis is variable in bone as well as soft tissue sarcoma. Possible factors for a long time from first symptom to diagnosis (the total interval) include patient, tumour and healthcare characteristics, but until now the most relevant risk factors and its association with outcomes remain unknown. Our study aims to (1) quantify total interval, the time interval from first symptom until (histological) diagnosis; (2) identify factors associated with interval length and (3) determine the association between total interval and HRQoL, stage and tumour size at diagnosis, progression-free survival (PFS) and OS. METHODS AND ANALYSIS: We will conduct a longitudinal, prospective, international, multicentre cohort study among patients aged ≥18 years with newly diagnosed bone or soft tissue sarcoma at eight centres (three in UK, five in The Netherlands). Patients will be asked to complete questionnaires at five points in time; one at diagnosis and at follow-up points of 3, 6, 12 and 24 months. Questionnaire data is collected within the Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry: an international data management system for collection of patient-reported outcomes. Clinical data will be extracted from patient records. The primary endpoint is HRQoL at diagnosis, measured with the EORTC QLQ-C30. Secondary endpoints are stage and tumour size at diagnosis, PFS, OS, additional patient-reported outcomes, such as quality-adjusted life years and psychological distress. ETHICS AND DISSEMINATION: Ethical approval was given by the Health Research Authority and Research Ethics Committee for the United Kingdom (18/WA/0096) and medical ethical committee of Radboudumc for The Netherlands (2017-3881). Results will be presented in peer-reviewed journals and presented at meetings. TRIAL REGISTRATION NUMBER: NCT03441906.