Determinants of health-related quality-of-life in adult survivors of childhood cancer: integrating personal and societal values through a health utility approach

Horan, Madeline R.; Srivastava, Deo Kumar; Bhakta, Nickhill; Ehrhardt, Matthew J.; Brinkman, Tara M.; Baker, Justin N.; Yasui, Yutaka; Krull, Kevin R.; Ness, Kirsten K.; Robison, Leslie L.; Hudson, Melissa M.; Huang, I‐Chan

doi:10.1016/j.eclinm.2023.101921

Cited by 9 publications

(2 citation statements)

References 26 publications

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“…Two multinomial logistic regression models analyzed characteristics of global cumulative symptom burden and burden of each symptom. Model 1 included personal risk factors (eg, survivor’s age and diagnosis) 20 , 21 and contextual risk factors (ie, family conflict, neighborhood deprivation, and caregiver anxiety) of greater symptom burden. Model 2 added survivor’s meaning/purpose to the risk factors in model 1.…”

Section: Methodsmentioning

confidence: 99%

Multilevel Characteristics of Cumulative Symptom Burden in Young Survivors of Childhood Cancer

Horan,

Srivastava,

Choi

et al. 2024

JAMA Netw Open

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ImportanceSymptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied.ObjectiveTo examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL).Design, Setting, and ParticipantsA cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024.ExposuresDiagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose.Main Outcomes and MeasuresNovel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations.ResultsAmong 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, −0.60; 95% CI, −0.87 to −0.32) and moderate/high (d, −0.98; 95% CI, −1.53 to −0.43) general pain, moderate/high numbness (d, −0.99; 95% CI, −1.69 to −0.29), and moderate/high worry (d, −0.55; 95% CI, −0.99 to −0.11) were associated with lower HRQOL.Conclusions and RelevanceIn this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.

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Section: Methodsmentioning

confidence: 99%

Multilevel Characteristics of Cumulative Symptom Burden in Young Survivors of Childhood Cancer

Horan,

Srivastava,

Choi

et al. 2024

JAMA Netw Open

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“…Over the past decade, many national/regional groups and cancer institutions have initiated large prospective cohort studies and registries to characterize the health and psychosocial outcomes of childhood cancer survivors. These chronic consequences of childhood cancer treatment negatively impact the physical and psychosocial wellbeing of pediatric cancer survivors and emphasize cancer survivorship as an unmet need [54,55]. However, it is important to note that these registries reflect the effects of conventional anti-cancer therapies (chemotherapy/radiotherapy) and may not reflect the trajectories of survivorship comorbidities associated with novel anti-cancer therapies, such as immunotherapy.…”

Section: Survivorship and Life After Cancer Therapymentioning

confidence: 99%

Supportive Care in Pediatric Oncology: Opportunities and Future Directions

Freedman,

Beeler,

Bowers

et al. 2023

Cancers

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The optimization of outcomes for pediatric cancer patients relies on the successful advancement of supportive care to ease the treatment burden and mitigate the long-term impacts of cancer therapy. Advancing pediatric supportive care requires research prioritization as well as the development and implementation of innovations. Like the prevailing theme throughout pediatric oncology, there is a clear need for personalized or precision approaches that are consistent, evidence-based, and guided by clinical practice guidelines. By incorporating technology and datasets, we can address questions which may not be feasible to explore in clinical trials. Now is the time to listen to patients’ voices by using patient-reported outcomes (PROs) to ensure that their contributions and experiences inform clinical care plans. Furthermore, while the extrapolation of knowledge and approaches from adult populations may suffice in the absence of pediatric-specific evidence, there is a critical need to specifically understand and implement elements of general and developmental pediatrics like growth, nutrition, development, and physical activity into care. Increased research funding for pediatric supportive care is critical to address resource availability, equity, and disparities across the globe. Our patients deserve to enjoy healthy, productive lives with optimized and enriched supportive care that spans the spectrum from diagnosis to survivorship.

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Burden of Childhood Cancer and the Social and Economic Challenges in Adulthood

Hernádfői,

Koch,

Kói

et al. 2024

JAMA Pediatr

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ImportanceSignificant advancements in pediatric oncology have led to a continuously growing population of survivors. Although extensive research is being conducted on the short-, medium-, and long-term somatic effects, reports on psychosocial reintegration are often conflicting; therefore, there is an urgent need to synthesize the evidence to obtain the clearest understanding and the most comprehensive answer.ObjectiveTo provide a comprehensive review and analysis of the socioeconomic attainment of childhood cancer survivors (CCSs) compared with their unaffected peers.Data SourcesA systematic review and meta-analysis was conducted using data obtained from a comprehensive search of MEDLINE (via PubMed), Embase, and CENTRAL (Cochrane Central Register of Controlled Trials) databases on October 23, 2021; the search was updated until July 31, 2023.Study SelectionEligible articles reported on educational attainment, employment, family formation, quality of life (QoL), or health-risk behavior-related outcomes of CCSs, and compared them with their unaffected peers. Study selection was performed in duplicate by 4 blinded independent coauthors.Data Extraction and SynthesisData extraction was performed in duplicate by 4 independent authors following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Outcome measures were odds ratios (ORs) and mean differences with 95% CIs; data were pooled using a random-effects model.ResultsThe search identified 43 913 articles, 280 of which were eligible for analysis, reporting data on a total of 389 502 survivors. CCSs were less likely to complete higher levels of education (OR, 0.69; 95% CI, 0.40-1.18), had higher odds of health-related unemployment (OR, 2.94; 95% CI, 1.90-4.57), and showed lower rates of marriage (OR, 0.72; 95% CI, 0.63-0.84) and parenthood (OR, 0.60; 95% CI, 0.49-0.74) compared with population-based controls.Conclusion and RelevanceStudy findings suggest that CCSs face several socioeconomic difficulties; as a result, the next goal of pediatric oncology should be to minimize adverse effects, as well as to provide lifelong survivorship support aimed at maximizing social reintegration.

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Determinants of health-related quality-of-life in adult survivors of childhood cancer: integrating personal and societal values through a health utility approach

Cited by 9 publications

References 26 publications

Multilevel Characteristics of Cumulative Symptom Burden in Young Survivors of Childhood Cancer

Multilevel Characteristics of Cumulative Symptom Burden in Young Survivors of Childhood Cancer

Supportive Care in Pediatric Oncology: Opportunities and Future Directions

Burden of Childhood Cancer and the Social and Economic Challenges in Adulthood

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