Diagnosed with a rare cancer: experiences of adult sarcoma survivors with the healthcare system-results from the SURVSARC study

Simple SummaryPatients with rare cancers face obstacles including delays in diagnosis, inadequate treatments and limited scientific evidence to guide decision making. These obstacles may have a unique impact on their experience with the healthcare system and might be different at various ages. Some aspects of care that shape the experience with the healthcare system include information needs, satisfaction with care and supportive care. Very little is known about these aspects of care, specifically for rare cancer patients. Sarcomas are prime examples of rare cancers and are diagnosed at all ages. In this study, we explored the experience of sarcoma patients (N = 1099) with the healthcare system and looked into detail at whether differences in experience existed between age groups. The results of this nationwide study showed that healthcare experiences differ per age group and we identified needs related to the rarity of these tumors, such as improvements concerning (non-)medical guidance and diagnostic intervals.The aim of this study was to explore the experience of rare cancer patients with the healthcare system and examine differences between age groups (adolescents and young adults (AYA, 18-39 years), older adults (OA, 40-69 years) and elderly (>= 70 years)). Dutch sarcoma patients, 2-10 years after diagnosis, completed a questionnaire on their experience with the healthcare system, satisfaction with care, information needs, patient and diagnostic intervals (first symptom to first doctor's visit and first doctor's visit to diagnosis, respectively) and received supportive care. In total, 1099 patients completed the questionnaire (response rate 58%): 186 AYAs, 748 OAs and 165 elderly. Many survivors experienced insufficient medical and non-medical guidance (32% and 38%), although satisfaction with care was rated good to excellent by 94%. Both patient and diagnostic intervals were >1 month for over half of the participants and information needs were largely met (97%). AYAs had the longest patient and diagnostic intervals, experienced the greatest lack of (non-)medical guidance, had more desire for patient support groups and used supportive care most often. This nationwide study among sarcoma survivors showed that healthcare experiences differ per age group and identified needs related to the rarity of these tumors, such as improvements concerning (non-)medical guidance and diagnostic intervals.Surgical oncolog