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A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors.

ABSTRACT:

Background

The National Cancer Institute has catalyzed research in adolescent and young adult (AYA) oncology by identifying the need for supportive care intervention studies and psychometrically robust health-related quality of life (HRQOL) measures. We evaluated progress toward these goals (1) examining changes in the number of registered psychosocial intervention trials being conducted with AYAs over time; (2) determining what domains of HRQOL were assessed across these intervention trials; and (3) identifying the most frequently used measures of HRQOL.

Methods

We conducted a systematic review of psychosocial intervention trials for AYAs registered on ClinicalTrials.gov from 2007 to 2021. Following identification of relevant trials, we extracted the outcome measures and determined whether they were measures of HRQOL and which HRQOL domains were evaluated. Descriptive statistics were used to summarize trial and outcome characteristics.

Results

We identified 93 studies that met our inclusion criteria and 326 HRQOL outcomes across studies. The average number of clinical trials conducted annually has increased from 2 (SD = 1) during the years of 2007-2014 to 11 (SD = 4) during the years of 2015-2021. 19 trials (20.4%) did not include a measure of HRQOL. HRQOL measures varied widely, and most evaluated psychological and physical domains. Of the 9 measures used 5 + times, none were developed to cover the full AYA age spectrum.

Conclusions

This review demonstrated that the number of AYA psychosocial intervention trials conducted annually has increased. However, it also revealed several important areas for additional work including: (1) ensuring psychosocial trials include HRQOL measures; (2) increasing the frequency of evaluation of underrepresented domains of HRQOL (e.g., body image, fertility/sexuality and spiritual); and (3) improving the validity and standardization of measures used to evaluate domains of HRQOL across AYA-focused trials to improve the field's ability to compare the impact of different psychosocial interventions on HRQOL outcomes.

SUBMITTER: Murphy KM

PROVIDER: S-EPMC10527433 | biostudies-literature | 2023 Aug

REPOSITORIES: biostudies-literature

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Publications

A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors.

Murphy Karly M KM Siembida Elizabeth E Lau Nancy N Berkman Amy A Roth Michael M Salsman John M JM

Critical reviews in oncology/hematology 20230602

<h4>Background</h4>The National Cancer Institute has catalyzed research in adolescent and young adult (AYA) oncology by identifying the need for supportive care intervention studies and psychometrically robust health-related quality of life (HRQOL) measures. We evaluated progress toward these goals (1) examining changes in the number of registered psychosocial intervention trials being conducted with AYAs over time; (2) determining what domains of HRQOL were assessed across these intervention tr ...[more]

PMID: 37269881

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Project description:BACKGROUND:Children with non-Hodgkin lymphoma (NHL) undergo treatment with central nervous system-directed therapy, the potentially neurotoxic effects of which have not been reported in NHL survivors. METHODS:NHL survivors (n = 187) participating in the St. Jude Lifetime Cohort who were 10 or more years from their diagnosis and were 18 years old or older underwent neurocognitive, emotional distress (Brief Symptom Inventory 18), and health-related quality of life (HRQOL) assessments (36-Item Short Form Health Survey). Age-adjusted z scores were compared with community controls (n = 181) and normative data. Treatment exposures were abstracted from medical records. Models adjusted for the age, sex, and time from diagnosis were used to calculate the risk of impairment. RESULTS:The mean ages at evaluation were similar for the survivors and the controls (35.7 ± 8.9 vs 35.5 ± 11.0 years; P = .86). Survivors were 25.2 ± 8.8 years from their diagnosis: 43 (23%) received cranial radiation, 70 (37%) received high-dose methotrexate, 40 (21%) received high-dose cytarabine, and 151 (81%) received intrathecal chemotherapy. Survivors' intelligence and attention were within normal limits; however, their memory, executive function, processing speed, and academics were impaired in comparison with both population norms and community controls (P values < .05). Treatment-related exposures were not associated with neurocognitive function; however, neurocognitive impairment was associated with lower educational attainment, unemployment, and occupational status (P values < .03). Slower processing speed and worse self-reported executive function were associated with symptoms of depression (P values ≤ .003) and poorer HRQOL (P values < .05). CONCLUSIONS:Adult survivors of childhood NHL experience impaired neurocognitive function, which is associated with lower social attainment and poor HRQOL. Early-detection and intervention strategies are recommended. Cancer 2017. © 2017 American Cancer Society.

Project description:ImportanceDepression is a leading cause of disability. The timing and persistence of depression may be differentially associated with long-term mental health and psychosocial outcomes.ObjectiveTo examine if depression symptoms during early and middle childhood and adolescence and persistent depression symptoms are associated with impaired young adult outcomes independent of early risk factors.Design, setting, and participantsData for this prospective, longitudinal cohort study were from the Québec Longitudinal Study of Child Development, a representative population-based Canadian birth cohort. The cohort consists of infants born from October 1, 1997, to July 31, 1998. This is an ongoing study; data are collected annually or every 2 years and include those ages 5 months to 21 years. The end date for the data in this study was June 30, 2019, and data analyses were performed from October 4, 2022, to January 3, 2024.ExposuresDepression symptoms were assessed using maternal reports in early childhood (ages 1.5 to 6 years) from 1999 to 2004, teacher reports in middle childhood (ages 7 to 12 years) from 2005 to 2010, and self-reports in adolescence (ages 13 to 17 years) from 2011 to 2015.Main outcomes and measuresThe primary outcome was depression symptoms at age 20 years, and secondary outcomes were indicators of psychosocial functioning (binge drinking; perceived stress; not being in education, employment, or training; social support; and experiencing online harrasment) at age 21 years. All outcomes were self-reported. Adult outcomes were reported by participants at ages 20 and 21 years from 2017 to 2019. Risk factors assessed when children were aged 5 months old were considered as covariates to assess the independent associations of childhood and adolescent depression symptoms with adult outcomes.ResultsThe cohort consisted of 2120 infants. The analytic sample size varied from 1118 to 1254 participants across outcomes (56.85% to 57.96% female). Concerning the primary outcome, adjusting for early risk factors and multiple testing, depression symptoms during adolescence were associated with higher levels of depression symptoms (β, 1.08 [95% CI, 0.84-1.32]; P < .001 unadjusted and Bonferroni adjusted) in young adulthood. Concerning the secondary outcomes, depression symptoms in adolescence were only associated with perceived stress (β, 3.63 [95% CI, 2.66-4.60]; P < .001 unadjusted and Bonferroni adjusted), while both middle-childhood (β, -1.58 [95% CI, -2.65 to -0.51]; P = .003 unadjusted and P < .001 Bonferroni adjusted) and adolescent (β, -1.97 [95% CI, -2.53 to -1.41]; P < .001 unadjusted and Bonferroni adjusted) depression symptoms were associated with lower levels of social support. There were no associations for binge drinking; not being in education, employment, or training; or experiencing online harrasment.Conclusions and relevanceIn this cohort study of Canadian children and adolescents, childhood and adolescent depression symptoms were associated with impaired adult psychosocial functioning. Interventions should aim to screen and monitor children and adolescents for depression to inform policymaking regarding young adult mental health and psychosocial outcomes.

Dataset Information

A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors.

Background

Methods

Results

Conclusions

Publications

A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors.

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