Courtney Harold Van Houtven, Katherine E M Miller, Hailey J James, Ryan Blunt, Wenhan Zhang, Abigail Cadua Mariani, Sydney Rose, Gerard P Alolod, Maureen Wilson-Genderson, Valerie A Smith, Maria D Thomson, Laura A Siminoff
{"title":"Economic costs of family caregiving for persons with advanced stage cancer: a longitudinal cohort study.","authors":"Courtney Harold Van Houtven, Katherine E M Miller, Hailey J James, Ryan Blunt, Wenhan Zhang, Abigail Cadua Mariani, Sydney Rose, Gerard P Alolod, Maureen Wilson-Genderson, Valerie A Smith, Maria D Thomson, Laura A Siminoff","doi":"10.1007/s11764-023-01462-6","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>To form a multifaceted picture of family caregiver economic costs in advanced cancer.</p><p><strong>Methods: </strong>A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h.</p><p><strong>Results: </strong>One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation.</p><p><strong>Conclusions: </strong>Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs.</p><p><strong>Implications for cancer survivors: </strong>Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"227-241"},"PeriodicalIF":3.1000,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Cancer Survivorship","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s11764-023-01462-6","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/10/12 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Purpose: To form a multifaceted picture of family caregiver economic costs in advanced cancer.
Methods: A multi-site cohort study collected prospective longitudinal data from caregivers of patients with advanced solid tumor cancers. Caregiver survey and out-of-pocket (OOP) receipt data were collected biweekly in-person for up to 24 weeks. Economic cost measures attributed to caregiving were as follows: amount of OOP costs, debt accrual, perceived economic situation, and working for pay. Descriptive analysis illustrates economic outcomes over time. Generalized linear mixed effects models asses the association of objective burden and economic outcomes, controlling for subjective burden and other factors. Objective burden is number of activities and instrumental activities of daily living (ADL/IADL) tasks, all caregiving tasks, and amount of time spent caregiving over 24 h.
Results: One hundred ninety-eight caregivers, 41% identifying as Black, were followed for a mean period of 16 weeks. Median 2-week out-of-pocket costs were $111. One-third of caregivers incurred debt to care for the patient and 24% reported being in an adverse economic situation. Whereas 49.5% reported working at study visit 1, 28.6% of caregivers at the last study visit reported working. In adjusted analysis, a higher number of caregiving tasks overall and ADL/IADL tasks specifically were associated with lower out-of-pocket expenses, a lower likelihood of working, and a higher likelihood of incurring debt and reporting an adverse economic situation.
Conclusions: Most caregivers of cancer patients with advanced stage disease experienced direct and indirect economic costs.
Implications for cancer survivors: Results support the need to find solutions to lessen economic costs for caregivers of persons with advanced cancer.
期刊介绍:
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.