Dataset Information

Quality of Life in Adolescents and Young Adults: The Role of Symptom Burden.

ABSTRACT:

Context

Adolescents and young adults (AYAs) with cancer report worse health-related quality of life (HRQOL) than other age groups. Symptom burden is a modifiable predictor of HRQOL.

Objectives

The objective of this study was to identify which symptoms are most burdensome to AYAs with advanced cancer.

Methods

In this observational study, English-speaking individuals aged 12-25 years undergoing treatment for advanced cancer completed assessments of symptom burden (Memorial Symptom Assessment Scale) and HRQOL (Pediatric Quality of Life Inventory Generic Form and Cancer Module; minimal clinically important difference 4.4). We dichotomized participants as having low (<7) or high (≥7) symptom prevalence. Mixed regression models estimated HRQOL differences between groups. For individual symptoms, unadjusted mixed models estimated HRQOL reductions.

Results

N = 58 AYAs completed baseline surveys. The median age was 17 years (IQR 15-19), 58% were male, 59% identified as white, and 44% were diagnosed with leukemia/lymphoma. High symptom prevalence was associated with a mean generic HRQOL 7 points lower (95% CI: -11, -3; P < 0.01) and cancer-specific HRQOL score 12 points lower (95% CI: -17, -7; P < 0.01) than low symptom prevalence. The most prevalent symptoms were fatigue (71%), pain (58%), and difficulty sleeping (58%). Fatigue (-8), difficulty concentrating (-7), and mouth sores (-6) were associated with the greatest generic HRQOL score reductions. Dysphagia (-12), difficulty concentrating (-12), and sadness (-11) were associated with the greatest cancer-specific HRQOL score reductions.

Conclusion

The symptom experience among AYAs with advanced cancer is unique. Separate evaluation of AYA's symptoms may optimize management and improve HRQOL.

SUBMITTER: Steineck A

PROVIDER: S-EPMC9378571 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Quality of Life in Adolescents and Young Adults: The Role of Symptom Burden.

Steineck Angela A Bradford Miranda C MC O'Daffer Alison A Fladeboe Kaitlyn M KM O'Donnell Maeve B MB Scott Samantha S Yi-Frazier Joyce P JP Rosenberg Abby R AR

Journal of pain and symptom management 20220529 3

<h4>Context</h4>Adolescents and young adults (AYAs) with cancer report worse health-related quality of life (HRQOL) than other age groups. Symptom burden is a modifiable predictor of HRQOL.<h4>Objectives</h4>The objective of this study was to identify which symptoms are most burdensome to AYAs with advanced cancer.<h4>Methods</h4>In this observational study, English-speaking individuals aged 12-25 years undergoing treatment for advanced cancer completed assessments of symptom burden (Memorial Sy ...[more]

PMID: 35649460

Similar Datasets

Project description:ImportanceUnderstanding how wealth influences the end-of-life experience is crucial for improving patient care and policy, particularly with regard to symptom burden.ObjectiveTo examine the prevalence of 12 end-of-life symptoms by wealth categories; the association between wealth and a composite measure of high symptom burden; and whether this association is mediated by multimorbidity, functional impairment, or dementia.Design, setting, and participantsThis cohort study used data from the Health and Retirement Study (HRS), a nationally representative survey of older adults in the US, on decedents who died between January 1, 2000, and February 28, 2021, from proxy-reported exit interviews through February 28, 2021. Decedents were HRS participants aged 65 years or older who had completed a core interview within 24 months before death and had a proxy-reported exit interview. The data analysis was performed from October 6, 2023, through November 26, 2024.ExposuresWealth (assets opposed to income) was categorized into low (bottom quartile, <$6000), medium (middle 2 quartiles, $6000-$120 000), and high (top quartile, >$120 000).Main outcomes and measuresThe presence of 12 individual end-of-life symptoms and a composite measure of high symptom burden (≥7 symptoms) were analyzed using modified Poisson regression. Mediators included multimorbidity, functional impairment, and dementia. Models were adjusted for age, sex, marital status, race and ethnicity, education, childhood socioeconomic status, HRS proxy respondent relationship, location of death, survey timing, year of death, and private insurance.ResultsOf 8976 decedents (mean [SD] age, 81.3 [8.6] years; 4927 women [55.1%] women) in the cohort, 2197 (22.5%) were included in the low wealth category, 4534 (50.5%) in the medium wealth category, and 2245 (27.1%) in the high wealth category. Decedents with lower wealth had a higher prevalence of end-of-life symptoms. High symptom burden was most common in the low wealth group (800 decedents [37.0%]) vs the medium (1301 decedents [28.0%]) and high wealth (512 decedents [23.2%]) groups. Low wealth was associated with a significantly increased risk of high symptom burden vs medium wealth (adjusted risk ratio, 0.79; 95% CI, 0.73-0.87) and high wealth (adjusted risk ratio, 0.71; 95% CI, 0.63-0.79). Multimorbidity, functional impairment, and dementia were more common in the low wealth group and mediated this association, with functional impairment being the strongest mediator.Conclusions and relevanceThis cohort study found that lower wealth was associated with a higher symptom burden at the end of life, mediated in part by higher rates of multimorbidity, functional impairment, and dementia. These findings highlight the need for policies and programs to support patients with lower financial resources to improve end-of-life experiences and mitigate wealth disparities.

Dataset Information

Quality of Life in Adolescents and Young Adults: The Role of Symptom Burden.

Context

Objectives

Methods

Results

Conclusion

Publications

Quality of Life in Adolescents and Young Adults: The Role of Symptom Burden.

Similar Datasets

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