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Nearly 25% of AYA Sarcoma Survivors Reported Impaired Social Functioning


Over a quarter of adolescent or young adult patients diagnosed with sarcomas will have difficulties financially, romantically for an extended period after diagnosis.

A recent study reports that adolescent or young adult sarcoma survivors have a higher risk of impaired social functioning after diagnosis, due in part to the rarity and intense treatment plans associated with this specific tumor.

“Social functioning in (adolescents and young adults) is often researched in common cancers or in cancer in general, yet this provides insights for (adolescents and young adults) with rare cancer that comes with additional obstacles,” the researchers wrote in the study published in the journal Cancer.

Sarcomas are a rare tumor type that originates in the bones or soft connective tissues. Although they make up approximately 1% of all cancer diagnoses in adults, sarcomas consist of 11% of cancer diagnoses in patients younger than 29 years, according to the study’s introduction. Due to the unique social, emotional and financial challenges adolescents and young adults may experience in general, a cancer diagnosis at this time may be considered particularly difficult to cope with.

Data were gathered from patients with sarcoma ages 18 to 39 years old who completed questionnaires assessing their social functioning. Patients were anywhere from two to 10 years since receiving a sarcoma diagnosis and had completed at least one line of treatment.

A total of 176 patients (45% men) completed the social functioning survey. In addition, 58% of patients had soft tissue sarcoma, meaning the tumor develops in muscle, fat, blood vessels, nerves or tendons instead of bone.

Based on responses on the questionnaires, 49 patients were considered to have impaired social functioning. Nearly half of patients (53.6%) in the study had stage 1 disease, but most of those with impaired social functioning had stage 2 disease (38.8%) followed by stage 1 sarcoma (32.7%).

Patients with comorbidities were also more likely to report impaired social functioning, with the most common being back pain, depression, asthma and thyroid disease.

Patients responded to a variety of statements with “disagree,” “neutral” or “agree.” Questions the impaired social functioning group were much more likely to agree with than those in the regular social functioning group include the following topics:

  • Preferring to spend time alone (63.3% versus 19%),
  • Interference with social activities (71.4% versus 14.3%),
  • Interference with relationships with family or friends (44.9% versus 4.8%),
  • Lost interest in social activities with other people (57.1% versus 12.7%) and
  • No longer have things in common with family or friends (46.9% versus 7.1%).

The main risk factors for impaired social functioning after diagnosis study authors identified were older age at time of diagnosis, comorbidities and disease stage 2 or higher, unemployment, lifestyle change due to financial difficulties and not being sexually active. In a more specific analysis of the data, researchers determined that unemployment and having to make lifestyle changes based on financial issues related to a patient’s cancer diagnosis or treatment were factors that likely determined impaired social functioning.

“These results emphasize the importance of follow-up care for patients with sarcoma that is not only disease-oriented but also focuses on age as well as psychological and social domains,” the study authors wrote.

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