Information needs of adolescent and young adult cancer patients and their parent-carers

Abstract

These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

Psychosocial issues for adolescent and young adult cancer patients in a global context: A forward‐looking approach

“…Sex, sexuality, gender identity, and fertility are separate and distinct topics that are often confounded in regard to AYAs. Among these, clinical attention to fertility is emphasized, and rightfully so given evidence of unmet oncofertility needs reported by AYAs . However, addressing and distinguishing AYA needs with regard to sexual function, behavior, sexual orientation, and gender identification are less well understood.…”

Understanding, measuring, and addressing the financial impact of cancer on adolescents and young adults

“…Additionally, research on interventions or strategies to address financial toxicity is lacking, despite AYAs with cancer identifying financial burden as a salient concern . Many AYAs and their caregivers report unmet information needs related to financial support . The complexity of financial burden and its impact on health outcomes warrants a multifaceted intervention approach.…”

“…56 Many AYAs and their caregivers report unmet information needs related to financial support. 57,58 The complexity of financial burden and its impact on health outcomes warrants a multifaceted intervention approach. Francoeur 59 proposed the following three financial intervention approaches for patients with cancer and their families: (1) provide education about cost-saving financial methods and decision making; (2) improve and expand referrals to financial assistance programs and community resources; and (3) enhance coping and adaptation strategies to manage financial stress (Table 3).…”

Oncofertility—An emerging discipline rather than a special consideration

“…The reproductive survivorship needs of patients with cancer are well described, but oncofertility care in survivorship is not well integrated into standard care. Cancer survivors need reproductive care in many ways such as disclosure of the infertility risk of past treatment and discussion about FP procedures carried out already, and opportunities for FP in the survivorship period . Discussions about sexual health, sexual dysfunction, preventative reproductive health (cervical smears and human papillomavirus vaccination) and management of hormonal insufficiency in male and female cancer survivors are important, and so is the assessment of reproductive potential following gonadotoxic treatment.…”

“…Cancer survivors need reproductive care in many ways such as disclosure of the infertility risk of past treatment and discussion about FP procedures carried out already, and opportunities for FP in the survivorship period. 90 Discussions about sexual health, sexual dysfunction, preventative reproductive health (cervical smears and human papillomavirus vaccination) and management of hormonal insufficiency in male and female cancer survivors are important, and so is the assessment of reproductive potential following gonadotoxic treatment. A significant number of patients with cancer will not have FP at diagnosis and the reproductive follow-up after cancer treatment is complete may give a window of opportunity for FP.…”