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How Do Claims‐Based Measures of End‐of‐Life Care Compare to Family Ratings of Care Quality?

OBJECTIVES: Assess whether frequently‐used claims‐based end‐of‐life (EOL) measures are associated with higher ratings of care quality. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: Deceased fee‐for‐service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after‐death survey (n = 2,559).

Fri, 06/03/2022 - 14:52

Family rules, routines, and caregiver distress during the first year of pediatric cancer treatment

Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic.

Mon, 05/30/2022 - 16:26

Family factors and health‐related quality of life within 6 months of completion of childhood cancer treatment

Objective: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment‐related variables, family factors (family functioning, caregiver health‐related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors.

Mon, 05/30/2022 - 11:40

Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid

Background: In cancers with a chronic phase, patients and family caregivers face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate the consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members.

Wed, 02/02/2022 - 12:30

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

Background: This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. Methods: A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Findings: Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted.

Mon, 01/31/2022 - 15:02

Caring ability of urban and rural family caregivers: association with overburden, stress and coping

Objective: To correlate caring ability with overburden, stress and coping of urban and rural family caregivers of patients undergoing cancer treatment. Method: Crosssectional study, carried out in a referral hospital for cancer treatment, with urban and rural caregivers who responded the following instruments: questionnaire of sociodemographic characterization of the caregiver and the care provided, Perceived Stress scale, Burden Interview scale and Brief COPE. Pearson’s correlation test was used for statistical analysis, with a significance level ≤5%.

Thu, 01/27/2022 - 11:57

Caregiver distress and quality of life in primary caregivers of oncology patients in active treatment and follow‐up

Objective: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow‐up. Methods: This cross‐sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver‐reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index—Cancer (CQOLC).

Mon, 01/24/2022 - 12:46

The mutual impact and moderating factors of quality of life between advanced cancer patients and their family caregivers

Purpose: Cancer and its treatment can affect quality of life (QOL) in cancer patient and family caregiver dyads. However, the factors influencing dyad QOL remain inconclusive. Our study was designed to (i) assess dyads’ QOL, and examine the relationship between the QOL of cancer patients and that of their family caregivers, and (ii) investigate factors that may modify this relationship. Methods: Participants comprised 641 cancer patient-family caregiver dyads.

Tue, 04/06/2021 - 10:57

Caregiver engagement practices in National Cancer Institute Clinical Oncology Research Program settings: Implications for research to advance the field

Background Supportive care interventions have demonstrated benefits for both informal and/or family cancer caregivers and their patients, but uptake generally is poor. To the authors' knowledge, little is known regarding the availability of supportive care services in community oncology practices, as well as engagement practices to connect caregivers with these services.

Wed, 03/10/2021 - 17:40