Young sarcoma survivors’ chronic health and functional issues highlight gaps in clinical practice

Adolescent and young adult (AYA) cancer survivors, including sarcoma survivors, face chronic health issues and functional impairment. Their multifaceted needs that change with age require specialized and transition care programmes – a gap to be bridged in clinical practice. 

“By 45 years of age, AYA cancer survivors have 2.2 times the risk of having chronic health conditions compared with age-matched siblings without a history of cancer,” said Dr Yin-Ting Cheung, School of Pharmacy, Chinese University of Hong Kong (CUHK), at the 4^th CUHK Sarcoma Masterclass. [Lancet Oncol 2020;21:421-435]

AYA cancer survivors are also at increased risk of adverse mental health outcomes, with a higher rate of outpatient mental health visits at 5 years after diagnosis vs controls (rate ratio [RR], 1.29; 95 percent confidence interval [CI], 1.08 to 1.54). Notably, the visit rates were substantially higher among survivors treated at adult vs paediatric centres. [J Clin Oncol 2021;399:1010-1019]

“At >5 years after sarcoma diagnosis, 17 percent of adolescent survivors were treated with psychoactive medications,” Cheung pointed out. “The RRs for use of antidepressants and opioids were 3.10 [95 percent CI, 1.43 to 6.71] and 3.81 [95 percent CI, 2.11 to 6.88], respectively, for sarcoma survivors vs sibling controls.” [JNCI Cancer Spectr 2020;4:pkaa05]

In addition, osteosarcoma survivors are at risk of adverse neurocognitive outcomes associated with chronic health conditions and neurotoxic therapies. [JAMA Oncol 2016;2:201-208; J Natl Cancer Inst 2018;110:411-419]

“In our survey of 90 AYA sarcoma survivors in Hong Kong, 11–17 percent showed cognitive impairment in terms of sustained attention and impulsivity/inhibition,” reported Cheung.

Cheung’s ongoing study included 47 soft tissue sarcoma survivors and 46 osteosarcoma survivors (male, 48 percent; mean age at diagnosis, 15.4 years; mean age at evaluation, 27.5 years) surveyed at a mean time of 12.3 years since diagnosis.

“Our results also showed behavioural problems and issues with satisfaction or perception of body image among the AYA sarcoma survivors,” said Cheung.

Findings from these studies highlight the need for specialized survivorship programmes covering transition to adult care, fertility preservation, integrative oncology, patient empowerment and evaluation of patient-reported outcomes.

“Lack of access to specialized AYA cancer care is an issue in Asia,” said Cheung. “A survey of 268 oncology practitioners in 22 Asian countries showed that only a minority had access to education or training mentors [36.9 percent], or to age-specific specialist nursing [28.4 percent].” [ESMO Open 2019;4:e000467]

“In another survey of 12 representatives of institutions providing care for paediatric/adolescent cancer patients in China, survivors’ lack of awareness of treatment-related late effects was identified as an important patient-related barrier to survivorship care,” Cheung noted. [JCO Glob Oncol 2021;7:261-276]

“Referral pathways and multidisciplinary service should be established at the beginning of the continuum to facilitate transition care for these patients,” she suggested.

“Likewise, information on fertility preservation should be provided early,” she noted. “Studies in Japan and Hong Kong showed inadequate information for AYA cancer survivors on treatment-related fertility and fertility preservation. Among clinicians in Hong Kong, only 45.6 percent of those surveyed were familiar with fertility preservation, and 68.3 percent had never referred a cancer patient for fertility preservation.” [Reprod Med Biol 2018;18:97-104; Hong Kong Med J 2017;23:556-561; Hong Kong Med J 2017;23:552-553]

“Increased popularity of traditional, complementary and integrative medicine [TCIM] highlights the importance of evidence-based integrative oncology, including education and checking for drug-TCIM interactions in clinical practice,” Cheung added.

In Cheung’s study in 339 AYA cancer survivors in Hong Kong, 52.2 percent reported TCIM use. “Most TCIM users were >25 years of age. Potential drug-TCIM interactions were detected in 34 percent of survivors on long-term prescription medications, but only a minority sought advice from oncologists,” she reported.