Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer

Abstract

Objective Health‐related quality of life (HRQoL) concerns of adolescents and young adults (AYAs) aged 14–25 years were compared with those of older adults (26–60 years) with cancer. Methods AYAs and older adults receiving curative intent treatment or supportive palliative care for cancer were recruited from eight research centres across Europe. Participants used a rating scale to score the relevance and importance of a list of 77 issues covering 10 areas of HRQoL concern: symptoms; activity restrictions; social; emotional; body image; self‐appraisals; outlook on life; lifestyle; treatment‐related and life beyond treatment. Results HRQoL issues were reviewed by 33 AYAs and 25 older adults. Several issues were recognised as relevant and important across all age groups: symptoms, emotional impact, outlook on life, lifestyle and treatment‐related. A number of issues were more relevant or important to AYAs including interrupted education, greater motivation to achieve academic goals, increased maturity, boredom, fertility and change in living situation. Conclusion While there is overlap in several of the HRQoL concerns across the age span, it is important that HRQoL measures used with AYAs capture the diverse and unique psychosocial aspects of this developmental stage.

Impact of cancer on school, work, and financial independence among adolescents and young adults

“…[3][4][5][6] Cancer can be especially disruptive to education and employment opportunities for AYA patients. 3,[7][8][9] This interruption in their developing lives can lead adolescent patients with cancer to feel a longing for normalcy, especially as they observe friends pursuing and achieving goals that they cannot attain. 10,11 Similarly, cancer causes many financial setbacks for AYA patients.…”

Unravelling the heterogeneity of soft tissue and bone sarcoma patients’ health-related quality of life: a systematic literature review with focus on tumour location

“…Full paper studies reported in English and published in 2000 or later were included if: (1) the objective was to describe HRQoL of patients with sarcoma; (2) patients had an age at sarcoma diagnosis of ≥15 years, as previous research has shown that patient-reported outcome measures (PROMs) that were developed for adults are applicable to adolescents and young adults(AYAs). 20 …”

“…Full paper studies reported in English and published in 2000 or later were included if: (1) the objective was to describe HRQoL of patients with sarcoma; (2) patients had an age at sarcoma diagnosis of ≥15 years, as previous research has shown that patient-reported outcome measures (PROMs) that were developed for adults are applicable to adolescents and young adults(AYAs). 20 Studies were excluded: (1) if they presented data of a study sample that included patients with gastrointestinal stromal tumours, desmoid-type fibromatosis, giant cell tumours, tenosynovial giant cell tumour formerly known as pigmented villonodular synovitis, Kaposi sarcoma, carcinosarcoma or benign bone or soft tissue lesions that comprised >20% of the total population; (2) if the study sample consisted of multiple cancer types including sarcoma but the HRQoL outcomes for patients with sarcoma could not be extracted; (3) if they presented data of fewer than 10 patients with sarcoma and (4) if they presented physician-reported outcome data (eg, Musculoskeletal Tumour Society Score). The described selection criteria were applied to the hits.…”

Transitioning adolescent and young adult cancer care research out of its adolescence

“…For example Specific barriers to AYA entering clinical trials are now characterised (Fern, Lewandowski, Coxon, & Whelan, ) Patient and health service organisational factors that underpin advanced disease at AYA cancer presentation are increasingly understood (Herbert et al, ) Biological differences between apparently similar cancers in AYA and other age groups are described in some areas (Tricoli et al, ) The specific healthcare professional competencies required for working with AYA are characterised (Taylor et al, ) The social difficulties of AYA with cancer are specifically and systematically described (Warner et al, ). The unmet needs of AYA have been frequently described and differ relatively little during the cancer trajectory (Lea et al, ). In this edition, Darlington et al comprehensively describe how specific AYA needs can influence the quality of life (Sodergren et al, ). …”

“…In this edition, Sodergren et al comprehensively describe how specific AYA needs can influence the quality of life (Sodergren et al, 2018).…”