Review underpins poor functional outcomes in AYAs with bony sarcomas

In a scoping review examining the functional outcomes of individuals with bony sarcomas, adolescent and young adult oncology (AYAO) patients seem to fare worse than their healthy counterparts and bony sarcoma patients from various age groups.

“[AYAO patients] have poorer outcomes in all aspects – physical, social, and psychological in bony sarcoma survivorship, as many changes from disease and treatment are usually persistent and irreversible, with significant impact on mobility, function, and body image,” said the researchers.

Eighteen papers were included in the review. Of these, 12 were cross-sectional studies, five were prospective, and one was retrospective. [Chin Clin Oncol 2024;13:50]

A review of four studies found that physical function was significantly lower among sarcoma survivors compared to the general population. There is also evidence indicating that patients treated with amputation needed more aids and experienced poorer functional mobility than those who underwent limb salvage surgery.

“Factors affecting physical functioning included tumour location, as it will directly impact reconstructive options and physical function,” the researchers noted. Other factors influencing physical function included age, gender, pain, and the ability to manage the affected limb. [J Adolesc Young Adult Oncol 2019;8:291-296]

AYAO patients also experienced reduced emotional and cognitive functioning compared to their peers. [Cancer 2023;129:1419-1431] The most common issues include limitations in employment and social interactions during both treatment and post-treatment phases. [Eur J Cancer Care (Engl) 2017;doi:10.1111/ecc.12603; Eur J Oncol Nurs 2014;18:267-272; J Pediatr Hematol Oncol 2019;41:112-117]

“However, post-treatment, adolescents had high expectations [for] their future,” the researchers noted. In a cross-sectional study, long-term AYA bony sarcoma survivors (>20 years post-treatment) adapted well despite their physical limitations. [Cancer 2013;119:3727-3736]

Functional outcomes are vital

Sarcomas make up 1 percent of all adult malignancies and 7 percent of childhood malignancies. Although rare, sarcomas are more common among AYAs, affecting approximately 10–20 percent. [Cancer 2018;124:2045-2057; Pediatr Blood Cancer 2015;62:1616-1629]

The National Cancer Institute defines AYAO patients as cancer patients aged 15–39 years. [https://www.cancer.gov/types/aya/research/ayao-august-2006.pdf, accessed 24 June 2025] At this age, individuals are generally expected to be active and independent, considering the numerous things they manage around this period.

However, bony sarcomas can deprive AYAO patients of their mobility and independence. “Swelling and functional impairment can occur if the tumour has progressed through the cortex, causing periosteum distension [which, in turn, leads to] intense pain, swelling, and restricted mobility,” said the researchers.

Given the lack of institutions with dedicated AYAO care, the needs of AYAO patients are often overlooked. “AYAO patients have often been neglected and have been referred to as the ‘lost tribe’,” the researchers said.

As a result, AYAO patients generally experience worse outcomes than patients of other ages. [Cancer 2016;122:1009-1016] Long-term AYAO survivors are also at risk of developing other medical conditions caused by either the cancer itself or treatment-related side effects. [J Cancer Surviv 2013;7:523-534; Cancer 2012;118:4884-4891]

“[AYAO patients] are stricken with a cancer diagnosis during the prime of their lives, and it is essential to manage them holistically to preserve and maximize their functional outcomes,” said the researchers.

“In the care of AYAO patients with bony sarcomas, functional outcomes are even more important, as these will affect not only their health-related quality of life but also their activity levels and independence,” they added. Functional outcomes in AYAO patients also directly correlate with their self-confidence and future employment endeavours.

The investigators called for further research to monitor long-term post-treatment and survivorship outcomes in this group of patients.