Physical activity and nutritional supportive care needs following a sarcoma diagnosis: barriers and opportunities for rare cancer survivorship care

Background: People with primary bone and soft tissue sarcoma are a unique and vulnerable population at high risk of physical dysfunction and disability. Treatment often leads to complex challenges, including pain, limited mobility, and loss of function. Exercise has the potential to improve strength and function, reduce disability, and improve quality of life. Nutrition plays a crucial role in supporting recovery and immune function, and enhancing treatment outcomes. Yet, limited research has explored physical activity and nutritional needs of people with sarcoma. Aim: To explore the physical activity and nutritional supportive care needs of people living with sarcoma from the perspectives of people with sarcoma, their carers, and HCPs. Method: A phenomenological approach was employed to understand lived experiences of people with sarcoma and their carers focusing on what physical activity and nutritional supportive care people received. Semi-structured interviews and focus groups were conducted with people with sarcoma, carers, and healthcare professionals. Multiple perspectives were included to understand the current clinical landscape for people experiencing sarcoma and healthcare professionals. Reflexive thematic analysis was used to draw meaning from the data and information power informed sample size. Results: We interviewed 46 participants (people with sarcoma n = 18, current carers n = 10, bereaved carers n = 3, and healthcare professionals n = 15) who emphasised the need for more information and support for physical activity and nutrition. Five themes were identified: Physical impact of sarcoma; Uncertainty about looking after the person with sarcoma; Needing rehabilitation support; Creating a new normal; and, Physical activity and healthy diet promote psychosocial well-being. Conclusion: As sarcoma substantially impacts physical functioning, it is essential that sarcoma-specific physical activity and nutrition information and supports are available and tailored to individuals. Multidisciplinary teams should provide ongoing physical activity and nutritional supportive care from diagnosis and throughout survivorship to improve health outcomes and QoL for people with sarcoma.