The Needs and Experiences of Post-Treatment Adolescent and Young Adult Cancer Survivors

Abstract

(1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (≥18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18–34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1–3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0–9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0–6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0–5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.

Preferences for exercise and physical activity support in adolescent and young adult cancer survivors: a cross-sectional survey

“…The complex mechanisms underlying these sequelae make them difficult to prevent and treat, often leading to chronic impairments in physical functioning and quality of life [ 4 ]. For example, highly burdensome health issues in AYAs like cancer-related cardiovascular disease [ 5 ], fatigue [ 6 ] and psychological distress [ 7 ] are known to be caused and influenced by interactions between cancer-, behavioural- and life stage-related physical and psychosocial factors [ 8 – 12 ]. Importantly, there is a growing body of evidence that multi-system interventions, like exercise, are among the most effective therapies to mitigate and reverse adverse effects associated with cancer and its treatment [ 13 – 15 ].…”

Biopsychosocial Factors Associated with Supportive Care Needs in Canadian Adolescent and Young Adult Cancer Survivors

“…Out of the 13,258 completed surveys, 575 respondents were AYAs between the ages of 18 and 34. Further detail regarding the survey development, sample selection, and survey dissemination is available in Fitch et al, 2018 [24], and Jones et al, 2021 [20].…”

“…Despite calls for the development of specialized follow-up care and survivorship programs for this unique population [18][19][20][21], many AYA survivorship issues continue to be poorly managed [18], leading to unmet supportive care needs and concerns. Research on AYA cancer survivors remains underrepresented in the literature [18], and there is little evidence to inform the care of AYAs survivors, particularly in the follow-up survivorship period, when unmet needs are often at their highest [22].…”

“…Previous studies have reported that up to half of AYA cancer survivors report unmet informational and services needs [19,23]. These needs can be physical, emotional, or practical in nature [20]. Identifying AYA cancer survivors who have higher numbers of needs and who are at risk of not having those needs met can aid oncology teams in identifying and referring them to appropriate programs and interventions.…”

Use of active video games with or without videoconferencing on health outcomes in adolescent and young adult cancer survivors: a systematic review

“…Cancer and cancer-related treatment are associated with a myriad of deleterious short-and long-term side effects that can negatively impact physical function and accelerate functional decline [7]. Notably, a recent study on AYA cancer survivors indicated a high rate of physical concerns (88%) and emotional concerns (79%), yet fewer than 50% reported that their concerns have been addressed by their healthcare team [8].…”