Distinct Features of Psychosocial Distress of Adolescents and Young Adults with Cancer Compared to Adults at Diagnosis: Patient-Reported Domains of Concern

Abstract

Purpose: Adolescents and young adults (AYA) (18-40) are a population of patients with cancer, who have distinctive developmental and psychosocial pressures. Using validated distress screening tools, we investigated psychosocial needs of AYA compared to older adults with cancer at diagnosis. Methods: AYA and older adult patients from British Columbia, Canada, between 2011 and 2016, who completed the Canadian Problem Checklist (CPC) and the PsychoSocial Screen for Cancer-Revised (PSSCAN-R) within 6 months of their cancer diagnosis were included in the study. Emotional, informational, physical, practical, social, and spiritual domain concerns are identified using the CPC. Psychosocial needs and distress are evaluated using the PSSCAN-R. Baseline demographics were obtained from the cancer registry. Based on gender, primary tumor site, and presence of metastasis, a 3:1 case match was performed with older adults (>40 years old). Statistical analyses included Chi square and Fisher's exact tests. Results: Two thousand and forty five AYA were case matched with 6050 older adults. Majority of patients were female (61.9%), and at diagnosis, 12.1% had metastatic disease. Top three tumor types were breast (20.4%), lymphoma (11.5%), and gastrointestinal (10.8%). The top five concerns for AYA (% AYA, % adults) were fear/worry (56.6, 42.9), understanding of illness (47.6, 41.4), sleep (35.2, 28.9), sadness (34.1, 20.0), and finances (33.8, 15.0). AYA reported higher symptoms of anxiety at baseline (% AYA, % older adults), both moderate (26.0, 19.9) and severe (26.6, 17.1) p < 0.01. Conclusion: Significant differences in psychosocial needs for AYA were seen at diagnosis across multiple domains, specifically, higher emotional, informational, physical, and financial distress. Development of supportive programming geared toward these domains early at diagnosis could benefit this distinct population.

Intensity and Prevalence of Psychological Distress in Cancer Inpatients: Cross-Sectional Study Using New Case-Finding Criteria for the Hospital Anxiety and Depression Scale

“…Our finding of gender differences in anxiety but not in depression only partially corroborates a previous study that reported gender differences in mental health ( De Girolamo et al, 2006 ), and conflicts with previous studies that reported higher depressive states in females than males ( Linden et al, 2012 ; Muzzatti et al, 2018 ). Younger participants in this study had less anxiety and depression than older patients, in accordance with one previous study ( Sellick and Edwardson, 2007 ) but conflicting with other studies that found either higher depression and anxiety in younger patients ( Linden et al, 2012 ; Naik et al, 2020 ; Smrke et al, 2020 ) or no age-related differences ( Annunziata et al, 2012 ). For instance, the prevalence of moderate (26 vs. 20%) and severe (27 vs. 17%) distress was higher in 18–40-year-old cancer patients within 6 months of their diagnosis than in older patients ( Smrke et al, 2020 ).…”

“…Younger participants in this study had less anxiety and depression than older patients, in accordance with one previous study ( Sellick and Edwardson, 2007 ) but conflicting with other studies that found either higher depression and anxiety in younger patients ( Linden et al, 2012 ; Naik et al, 2020 ; Smrke et al, 2020 ) or no age-related differences ( Annunziata et al, 2012 ). For instance, the prevalence of moderate (26 vs. 20%) and severe (27 vs. 17%) distress was higher in 18–40-year-old cancer patients within 6 months of their diagnosis than in older patients ( Smrke et al, 2020 ). Burgoyne et al (2015) compared the distress levels of cancer patients aged 18–39, 40–64, and 65–90 years, and found that the youngest group had higher cancer-related distress than the oldest one but similar distress levels to the middle-aged group.…”

How dignity‐related distress interacts with quality of life in young adult patients with cancer during the active treatment stage: A network analysis

“…First and foremost, our results highlighted the central role of developmental distress since consistent results were found in its centrality and its interplay with QoL in three networks. A Canadian study found that most concerns reported by AYAs fall into practical areas such as work/school and finances 24 . The consensus is that AYAs all belong to a specific age group with the life purpose of independence and development.…”

Addressing distress management challenges: Recommendations from the consensus panel of the American Psychosocial Oncology Society and the Association of Oncology Social Work

“…We recommend that pediatric and AYA patients receive regular, ongoing psychosocial screening and that AYA patients are given the opportunity for care planning away from caregivers to promote privacy. Screening and assessment should include areas specific to the unique stressors of the AYA population, such as the following domains: emotional, physical, spiritual, social (peers, family, romantic), practical (education, career development, employment), and informational (fertility and healthy lifestyle behaviors—safe sex and tobacco, alcohol, and substance abuse) 93 …”

“…Screening and assessment should include areas specific to the unique stressors of the AYA population, such as the following domains: emotional, physical, spiritual, social (peers, family, romantic), practical (education, career development, employment), and informational (fertility and healthy lifestyle behaviors-safe sex and tobacco, alcohol, and substance abuse). 93…”