Correlates of financial toxicity in adult cancer patients and their informal caregivers.
Ontology highlight
ABSTRACT: Background
Financial toxicity is commonly reported by cancer patients, but few studies have assessed caregiver perceptions. We aimed to validate the modified Comprehensive Score for Financial Toxicity (COST) in cancer caregivers, identify factors associated with financial toxicity in both patients and caregivers, and assess the association of caregiver financial toxicity with patient and caregiver outcomes.Methods
Using a convenience sampling method, 100 dyads of adult cancer patients and a primary caregiver visiting outpatient oncology clinics (Jan-Sep 2019) were recruited. We assessed the internal consistency and convergent and divergent validity of the modified COST. Multivariable analyses identified correlates of financial toxicity. Association of financial toxicity with care non-adherence, lifestyle-altering behaviors (e.g., home refinance/sale, retirement/saving account withdrawal), and quality of life (QOL) was investigated.Results
Recruited patient vs. caregiver characteristics were as follows: mean age: 60.6 vs. 56.5; 34% vs. 46.4% female; 79% vs. 81.4% white. The caregiver COST measure demonstrated high internal consistency (Cronbach α = 0.91). In patients, older age (B, 0.3 [95% CI, 0.1-0.4]) and higher annual household income (B, 14.3 [95% CI, 9.3-19.4]) correlated with lower financial toxicity (P < 0.05). In caregivers, lower patient financial toxicity (B, 0.4 [95% CI, 0.2-0.6]) and cancer stages 1-3 (compared to stage 4) (B, 4.6 [95% CI, 0.4-8.8]) correlated with lower financial toxicity (P < 0.05). Increased caregiver financial toxicity correlated with higher care non-adherence in patients, increased lifestyle-altering behaviors, and lower QOL in patients and caregivers (P < 0.05).Conclusion
The COST measure can also be used to assess caregiver financial toxicity. Caregivers' financial toxicity was associated with negative outcomes for both dyad members.
SUBMITTER: Sadigh G
PROVIDER: S-EPMC8639637 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:Previous studies have found that cancer patients undergoing chemotherapy can effectively manage their own symptoms when given tailored advice. This approach, however, may challenge patients with poor performance status and/or emotional distress. Our goal is to test an automated intervention that engages a friend or family member to support a patient through chemotherapy.We describe the design and rationale of a randomized, controlled trial to assess the efficacy of 10 weeks of web-based caregiver alerts and tailored advice for helping a patient manage symptoms related to chemotherapy. The study aims to test the primary hypothesis that patients whose caregivers receive alerts and tailored advice will report less frequent and less severe symptoms at 10 and 14 weeks when compared to patients in the control arm; similarly, they will report better physical function, fewer outpatient visits and hospitalizations related to symptoms, and greater adherence to chemotherapy. 300 patients with solid tumors undergoing chemotherapy at two Veteran Administration oncology clinics reporting any symptom at a severity of ?4 and a willing informal caregiver will be assigned to either 10 weeks of automated telephonic symptom assessment (ATSA) alone, or 10 weeks of ATSA plus web-based notification of symptom severity and problem solving advice to their chosen caregiver. Patients and caregivers will be surveyed at intake, 10 weeks and 14 weeks. Both groups will receive standard oncology, hospice, and palliative care.Patients undergoing chemotherapy experience many symptoms that they may be able to manage with the support of an activated caregiver. This intervention uses readily available technology to improve patient caregiver communication about symptoms and caregiver knowledge of symptom management. If successful, it could substantially improve the quality of life of veterans and their families during the stresses of chemotherapy without substantially increasing the cost of care.NCT00983892.
| S-EPMC3295676 | biostudies-literature
Project description:BackgroundFew studies have assessed the financial impact of cancer diagnosis on patients and caregivers in diverse clinical settings. S1417CD, led by the SWOG Cancer Research Network, is the first prospective longitudinal cohort study assessing financial outcomes conducted in the NCI Community Oncology Research Program (NCORP). We report our experience navigating design and implementation barriers.MethodsPatients age ≥ 18 within 120 days of metastatic colorectal cancer diagnosis were considered eligible and invited to identify a caregiver to participate in an optional substudy. Measures include 1) patient and caregiver surveys assessing financial status, caregiver burden, and quality of life and 2) patient credit reports obtained from the credit agency TransUnion through a linkage requiring social security numbers and secure data transfer processes. The primary endpoint is incidence of treatment-related financial hardship, defined as one or more of the following: debt accrual, selling or refinancing home, ≥20% income decline, or borrowing money. Accrual goal was n = 374 patients in 3 years.ResultsS1417CD activated on Apr 1, 2016 and closed on Feb 1, 2019 after reaching its accrual goal sooner than anticipated. A total of 380 patients (median age 59.7 years) and 155 caregivers enrolled across 548 clinical sites. Credit data were not obtainable for 76 (20%) patients due to early death, lack of credit, or inability to match records.ConclusionsRobust accrual to S1417CD demonstrates patients' and caregivers' willingness to improve understanding of financial toxicity despite perceived barriers such as embarrassment and fears that disclosing financial status could influence treatment recommendations.
| S-EPMC8171354 | biostudies-literature
Project description:IntroductionFinancial toxicity (FT) is a growing concern among cancer survivors that adversely affects the quality of life and survival. Individuals diagnosed with aggressive cancers are often at a greater risk of experiencing FT. The objectives of this study were to estimate FT among prostate cancer (PCa) survivors after 10-15 years of diagnosis, assess the relationship between PCa aggressiveness at diagnosis and FT, and examine whether current cancer treatment status mediates the relationship between PCa aggressiveness and FT.MethodsPCa patients enrolled in the North Carolina-Louisiana Prostate Cancer Project (PCaP) were recontacted for long-term follow-up. The prevalence of FT in the PCaP cohort was estimated. FT was estimated using the COmprehensive Score for Financial Toxicity, a validated measure of FT. The direct effect of PCa aggressiveness and an indirect effect through current cancer treatment on FT was examined using causal mediation analysis.ResultsMore than one-third of PCa patients reported experiencing FT. PCa aggressiveness was significantly independently associated with high FT; high aggressive PCa at diagnosis had more than twice the risk of experiencing FT than those with low or intermediate aggressive PCa (adjusted odds ratio [aOR] = 2.13, 95% CI = 1.14-3.96). The proportion of the effect of PCa aggressiveness on FT, mediated by treatment status, was 10%, however, the adjusted odds ratio did not indicate significant evidence of mediation by treatment status (aOR = 1.05, 95% CI = 0.95-1.20).ConclusionsAggressive PCa was associated with high FT. Future studies should collect more information about the characteristics of men with high FT and identify additional risk factors of FT.
| S-EPMC10087487 | biostudies-literature
Project description:BackgroundAlmost half of the patients with cancer report cancer-related financial hardship, termed "financial toxicity" (FT), which affects health-related quality of life, care retention, and, in extreme cases, mortality. This increasingly prevalent hardship warrants urgent intervention. Financial navigation (FN) targets FT by systematically identifying patients at high risk, assessing eligibility for existing resources, clarifying treatment cost expectations, and working with patients and caregivers to develop a plan to cope with cancer costs. This trial seeks to (1) identify FN implementation determinants and implementation outcomes, and (2) evaluate the effectiveness of FN in improving patient outcomes.MethodsThe Lessening the Impact of Financial Toxicity (LIFT) study is a multi-site Phase 2 clinical trial. We use a pre-/post- single-arm intervention to examine the effect of FN on FT in adults with cancer. The LIFT trial is being conducted at nine oncology care settings across North Carolina in the United States. Sites vary in geography (five rural, four non-rural), size (21-974 inpatient beds), and ownership structure (governmental, non-profit). The study will enroll 780 patients total over approximately 2 years. Eligible patients must be 18 years or older, have a confirmed cancer diagnosis (any type) within the past 5 years or be living with advanced disease, and screen positive for cancer-related financial distress. LIFT will be delivered by full- or part-time financial navigators and consists of 3 components: (1) systematic FT screening identification and comprehensive intake assessment; (2) connecting patients experiencing FT to financial support resources via trained oncology financial navigators; and (3) ongoing check-ins and electronic tracking of patients' progress and outcomes by financial navigators. We will measure intervention effectiveness by evaluating change in FT (via the validated Comprehensive Score of Financial Toxicity, or COST instrument) (primary outcome), as well as health-related quality of life (PROMIS Global Health Questionnaire), and patient-reported delayed or forgone care due to cost. We also assess patient- and stakeholder-reported implementation and service outcomes post-intervention, including uptake, fidelity, acceptability, cost, patient-centeredness, and timeliness.DiscussionThis study adds to the growing evidence on FN by evaluating its implementation and effectiveness across diverse oncology care settings.Trial registrationClinicalTrials.gov NCT04931251. Registered on June 18, 2021.
| S-EPMC9527389 | biostudies-literature
Project description:PurposeCancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.MethodsSeven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.ResultsSocial consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.ConclusionsSocial consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.
| S-EPMC6394690 | biostudies-literature
Project description:BackgroundThis systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.MethodsTen electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.ResultsFifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.ConclusionBoth advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.
| S-EPMC6057056 | biostudies-literature
Project description:Financial toxicity (FT) has been used to describe patients' whole economic experience that negatively impacts their well-being. FT's adverse effects on patients' health outcomes have been reported by reviews conducted in Western countries. However, these findings may not apply to patients in China. This review aimed to analyze existing data on the measures, prevalence, risk factors, and health-related consequences of FT in China. We searched 10 databases in May 2021 and again in January 2022 using Medical Subject Headings terms and free text. We also searched the reference lists of included articles. Two reviewers independently screened the studies, extracted the data, and assessed the quality of the included studies using the Joanna Briggs Institute Critical Appraisal Checklist. Thirty-one articles describing 30 studies were included in the analysis. Various FT measures were identified, but the number of validated measures was limited. The prevalence of material, psychological, and behavioral FT was 6%-78%, 61%-84%, and 10%-79%, respectively. We identified common risk factors and health-related consequences associated with FT similar to those reported in previous reviews. We also identified several potential risk factors (eg, increased length of hospital stay and larger household size) and consequences (patients' self-perceived burden) in a limited number of studies. Our findings show an urgent need for more data on the prevalence, risk factors, and health-related consequences associated with FT in Chinese cancer patients, and these data must be generated using validated measures.
| S-EPMC9184292 | biostudies-literature
Project description:IntroductionLung cancer has the second-ranked morbidity rate and the first-ranked mortality rate worldwide. With the progression of the cancer condition and the advancement of new treatments, the corresponding medical expenses have risen sharply. Nowadays, financial toxicity has become one of the most common concerns in patients with cancer. However, by far, the full landscape of studies on financial toxicity is unclear in patients with lung cancer. Thus, this scoping review aims to summarise the degree, affecting factors, outcomes and intervention strategies of financial toxicity in patients with lung cancer.Methods and analysisThis scoping review will be developed following the methodology described in the Joanna Briggs Institute Manual for Evidence Synthesis on scoping review protocol, which was based on Arksey and O'Malley's methodological framework, Levac et al's recommendations for applying this framework and Peters et al's enhancements of the framework. From the day of database building to 31 December 2021, 10 English databases will be searched in the 'Abstract' field with three key search terms: "Lung", "Cancer" and "Financial toxicity". The studies' screening and data extraction will be independently performed by two reviewers (MZ and RZ). Any disagreements between the two reviewers (MZ and RZ) will be resolved by consensus, and a third reviewer (BW) will be invited if necessary. The results will be analysed and presented using tables and figures. This scoping review will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist.Ethics and disseminationAn ethical approval is not required for this scoping review protocol, nor for the scoping review. The results of this scoping review will be disseminated through publication in a peer-reviewed journal or presentation at conferences.RegistrationThis scoping review protocol has been registered in the Open Science Framework (https://osf.io/ub45n/?view_only=bb93eb94e1434a0f8196b3b61cffcec2).
| S-EPMC9131061 | biostudies-literature
Project description:IntroductionInformal caregivers play a major role in the support and maintenance of community patients with severe psychiatric disorders. A pilot study showed that an individualised brief intervention such as the Ensemble programme leads to significant improvements in psychological health state and optimism.Methods and analysisThis randomised controlled trial aims to compare the efficacy of using Ensemble in improving informal caregivers' psychological health states and the ability to play an active role in their situations with that of support as usual. Improvements on the psychological health global index will be measured three times (T0-pre, T1-post and T3 2 months follow) with standardised questionnaires (the Global Severity Index of Brief Inventory Symptoms, the Life Orientation Test-Revised, the 36-item Medical Outcome Study Short-Form Health Survey and the French Zarit Burden Interview). Differences between groups in post-test and pretest values will be examined using an analysis of covariance for each outcome variable. The severity of illness measured by the Social and Occupational Functioning Assessment Scale will also be collected at T0 and T2 to compare eventual patient improvements. At the end of the programme, the experiences of the 20 patients participating in the Ensemble programme will be evaluated qualitatively.Ethics and disseminationThe research protocol received full authorisation from the Human Research Ethics Committee of the Vaud state, Switzerland. The principal paper will concern the results of the experimental design used to test the Ensemble programme. The research team will prioritise open access publications.Trial registration numberNCT04020497.
| S-EPMC7394301 | biostudies-literature
Project description:BackgroundSocial support is a key component in maintaining cancer caregiver well-being, and many resources exist to facilitate caregivers' use of social support (eg, cancer support groups). This study sought to determine how informal cancer caregivers use social resources over the course of caregiving.MethodsThe data are from the Comprehensive Health Enhancement Support System study of informal caregivers (n = 202) of patients with recently diagnosed lung cancer. Caregivers self-reported their sociodemographic and caregiving characteristics and social resource use over 6 months. Generalized additive models were used to assess social resource use over time, and generalized estimating equation logistic regression models were used to assess the correlates of social resource use.ResultsNearly two-thirds of caregivers reported any social resource use. The most prevalent social resources were faith-based groups (38%) and social clubs (30%). Only 1 in 4 caregivers participated in a formal resource such as counseling (11%) or a cancer support group (6%). Social resource use was lowest immediately after the diagnosis and increased over time. Formal resource use exhibited a nonlinear association with time such that formal resource use peaked approximately 9 to 10 months after the cancer diagnosis. Caregivers were more likely to report social resource use if the patient also reported social engagement.ConclusionsThis study has found that many cancer caregivers do not use social resources, although social resource use increases over time after the cancer diagnosis. Because of the association between social engagement and well-being, this information may inform future research and interventions to improve outcomes for cancer caregivers and their families.
| S-EPMC6952577 | biostudies-literature