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Sarcoma patients say they need more non-medical guidance

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Healthcare experiences differ greatly based on the age, with young adults with sarcoma wanting more non-medical guidance and support groups, according to a study.

In this study, 1099 patients with sarcoma completed a questionnaire on their experience with the healthcare system, satisfaction with care, information needs, patient and diagnostic intervals, and received supportive care between 2 to 10 years after their sarcoma diagnosis.

Respondents were grouped according to age. A total of 186 respondents were between the ages of 18 and 39 years (adolescents and young adults), 748 respondents were between the ages of 40 and 69 years (older adults), and 165 respondents were ≥70 years (elderly).

Patient and diagnostic intervals were >1 month for more than half of responders and 97% reported having their information needs met.

Adolescents and young adults reported having the longest patient and diagnostic intervals. They also reported having more desire for patient support groups and non-medical guidance.

Drabbe C, Grünhagen DJ, Van Houdt WJ, et al. Diagnosed with a rare cancer: experiences of adult sarcoma survivors with the healthcare system-results from the SURVSARC Study. Cancers (Basel). 2021;DOI: 10.3390/cancers13040679. PMID: 33567553.