Dataset Information

Supporting breast cancer screening decisions for caregivers of older women with dementia: study protocol for a randomized controlled trial.

ABSTRACT: BACKGROUND:Alzheimer's disease and related dementias (ADRD) impact a woman's life expectancy and her ability to participate in medical decision-making about breast cancer screening, necessitating the involvement of family caregivers. Making decisions about mammography screening for women with ADRD is stressful. There are no data that suggest that breast cancer screening helps women with ADRD live longer or better. Decision aids may improve the quality of decision-making about mammography for ADRD patients and may inform family caregivers about the risks, benefits, and need for decision-making around mammography screening. METHODS/DESIGN:The Decisions about Cancer Screening in Alzheimer's Disease (DECAD) trial, a randomized controlled clinical trial, will enroll 426 dyads of older women with ADRD (?75 years) and a family caregiver from clinics and primary-care practices in Indiana to test a novel, evidence-based decision aid. This decision aid includes information about the impact of ADRD on life expectancy, the benefit of mammograms, and the impact on the quality of life for older women with ADRD. Dyads will be randomized to receive the decision aid or active control information about home safety. This trial will examine the effect on the caregiver's decisional conflict (primary outcome) and the caregiver's decision-making self-efficacy (secondary outcome). A second follow-up at 15 months will include a brief, semi-structured interview with the caregiver regarding the patient's experience with mammograms and decision-making about mammograms. At the same time, a review of the patient's electronic medical record (EMR) will look at discussions about mammography with their primary-care physician and mammogram orders, receipt, results, and burden (e.g., additional diagnostic procedures due to false-positive results, identification of an abnormality on the screening exam but further work-up declined, and identification of a clinically unimportant cancer). A third follow-up at 24 months will extract EMR data on mammogram orders, occurrences, results, and the burden of mammograms. DISCUSSION:We hypothesize that caregivers who receive the decision aid will have lower levels of decisional conflict and higher levels of decision-making self-efficacy compared to the control group. We also hypothesize that the DECAD decision aid will reduce mammography use among older women with ADRD. TRIAL REGISTRATION:Clinical Trials Register, NCT03282097 . Registered on 13 September 2017.

SUBMITTER: Fowler NR

PROVIDER: S-EPMC6292112 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Supporting breast cancer screening decisions for caregivers of older women with dementia: study protocol for a randomized controlled trial.

Fowler Nicole R NR Schonberg Mara A MA Sachs Greg A GA Schwartz Peter H PH Gao Sujuan S Lane Kathleen A KA Inger Lev L Torke Alexia M AM

Trials 20181212 1

<h4>Background</h4>Alzheimer's disease and related dementias (ADRD) impact a woman's life expectancy and her ability to participate in medical decision-making about breast cancer screening, necessitating the involvement of family caregivers. Making decisions about mammography screening for women with ADRD is stressful. There are no data that suggest that breast cancer screening helps women with ADRD live longer or better. Decision aids may improve the quality of decision-making about mammography ...[more]

PMID: 30541634

Similar Datasets

Project description:Background and Objectives:The number of persons living with dementia (PLWD) in the United States will reach 16 million by 2050. Behavioral and psychological symptoms of dementia challenge family caregivers and contribute to negative caregiver outcomes such as burden and depression. Available technology can support the delivery of effective interventions to families providing dementia care at home. The Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) randomized controlled trial evaluated the effects of a telehealth intervention on caregiver outcomes. Research Design and Methods:The FamTechCare intervention provides tailored dementia-care strategies to in-home caregivers based on video recordings caregivers submit of challenging care situations. An expert team reviews the videos and provides individualized interventions weekly for the experimental group. In the telephone-support attention control group, caregivers receive feedback from an interventionist via the telephone based on caregiver retrospective recall of care challenges. Effects of the intervention on caregiver outcomes, including burden, depression, sleep disturbance, competence, desire to institutionalize the PLWD, and caregiver reaction to behavioral symptoms were evaluated by fitting linear mixed regression models to changes in the outcomes measured at 1 and 3 months. Results:FamTechCare caregivers (n = 42) had greater reductions in depression (p = .012) and gains in competence (p = .033) after 3 months compared to the attention control group (n = 41). Living in rural areas was associated with a reduction in depression for FamTechCare caregivers (p = .002). Higher level of education was associated with greater improvements or lesser declines in burden, competence, and reaction to behavioral symptoms for both the FamTechCare and attention control caregivers. Discussion and Implications:This research demonstrated benefits of using available technology to link families to dementia care experts using video-recording technology. It provides a foundation for future research testing telehealth interventions, tailored based on rich contextual data to support families, including those in rural or remote locations.

Project description:IntroductionAs the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in elder care, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance to the elderly, and to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the elder care policy environment.Methods and analysisGiven the vast and multidisciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O'Malley that entails six stages, including: (1) identifying the research question(s); (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; (6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible. We will pursue an iterative integrated knowledge translation (iKT) strategy engaging our knowledge users through all stages of the review.Ethics and disseminationBy adopting an iKT strategy we will ensure our knowledge users directly contribute to the project's policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada's English language informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies. Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.

Project description:BACKGROUND:Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. OBJECTIVE:In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. METHODS:We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. RESULTS:We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. CONCLUSIONS:Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

Project description:BACKGROUND:Patients with Alzheimer's disease and related dementias (ADRD) and traumatic brain injury (TBI) and their caregivers require cognitive and behavioral symptom management, interdisciplinary care, support for caregivers, and seamless care coordination between providers. Caring for someone with ADRD or TBI is associated with higher rates of psychological morbidity and burden, social isolation, financial hardship, and deterioration of physical health. Tremendous need exists for primary care-based interventions that concurrently address the care needs of dyads and aim to improve care and outcomes for both individuals with ADRD and TBI and their family caregivers. METHODS:The Aging Brain Care Acquiring New Skills While Enhancing Remaining Strengths (ABC ANSWERS) study is a randomized controlled trial that tests the effectiveness of an intervention based on two evidence-based programs that have been developed for and previously tested in populations with ADRD, TBI, stroke, and late-life depression and/or who have survived an intensive care unit stay. This study includes 200 dyads comprised of a veteran with a diagnosis of ADRD or TBI and the veteran's primary informal caregiver. Dyads are randomized to receive the ABC ANSWERS intervention or routine Veterans Health Administration (VHA) primary care with a standardized educational and resource information packet. Data collection occurs at baseline and three follow-up time points (3?months, 6?months, and 12?months). The primary outcome is caregiver quality of life (QoL). A secondary measure for the caregiver is caregiver burden. Secondary measures for both the veteran and caregiver include symptoms of depression and anxiety. DISCUSSION:The ABC ANSWERS intervention integrates common features of an evidence-based collaborative care model for brain health while concurrently attending to the implementation barriers of delivering care and skills to dyads. We hypothesize that caregivers in dyads randomized to the ABC ANSWERS program will experience higher levels of QoL and lower levels of depression, anxiety, dyadic strain, and caregiver burden at 12?months than those receiving usual VHA primary care. TRIAL REGISTRATION:ClinicalTrials.gov, NCT03397667. Registered on 12 January 2018.

Project description:INTRODUCTION:Shared decision making is an interpersonal process whereby healthcare providers collaborate with and support patients in decision-making. Older adults receiving home care need support with decision-making. We will explore what older adults receiving home care and their caregivers need for making better health-related decisions. METHODS AND ANALYSIS:This two-phase sequential exploratory mixed methods study will be conducted in a pan-Canadian healthcare organisation, SE Health. First, we will create a participant advisory group to advise us throughout the research process. In phase 1 (qualitative), we will recruit a convenience sample of 15-30 older adults and caregivers receiving home care to participate in open-ended semi-structured interviews. Phase 1 participants will be invited to share what health-related decisions they face at home and what they need for making better decisions. In phase 2 (quantitative), interdisciplinary health and social care providers will be invited to answer a web-based survey to share their views on the decisional needs of older adults and their caregivers. The survey will include questions informed by findings from qualitative interviews in phase 1, and a workbook for assessing decisional needs based on the Ottawa Decision Support Framework. Finally, qualitative and quantitative results will be triangulated (by methods, investigator, theory and source) to develop a comprehensive understanding of decision-making needs from the perspective of older adults, caregivers and health and social care providers. We will use the quality of mixed methods studies in health services research guidelines and the Checklist for Reporting the Results of Internet E-Surveys checklist. ETHICS AND DISSEMINATION:Ethics approval was obtained from the research ethics boards at Southlake Regional Health Centre and Université Laval. This study will inform the design of decision support interventions. Further dissemination plans include summary briefs for study participants, tailored reports for home care decision makers and policy makers, and peer-reviewed publications. TRIAL REGISTRATION NUMBER:NCT04327830.

Project description:INTRODUCTION:Exercise interventions have been widely investigated in patients with cancer and demonstrate beneficial effects. However, intervention studies that include older women with breast cancer exercising during medical treatment are scarce. Hence, the aim of this study is to investigate the effect of a 12-week exercise-based intervention in older women (?65 years) with breast cancer receiving (neo)adjuvant or first-line or second-line systemic therapy. METHODS AND ANALYSIS:This is a single-centre, two-armed randomised controlled trial. We anticipate including 100 patients, who will be randomised 1:1 to exercise-based intervention or control stratified by treatment setting ((neo)adjuvant or metastatic) and treatment (chemotherapy or endocrine therapy + cyclin-dependent kinase (CDK) 4/6 inhibitors). The intervention group will receive standard oncological treatment and a 12-week supervised exercise-based intervention comprising a progressive resistance exercise programme two times per week, a protein supplement after exercise and a home-based walking programme based on daily step counts. The control group will receive standard oncological treatment. Assessments will be performed at baseline and 6, 12 and 24 weeks after start of the intervention. Primary outcome is physical function, measured by the 30-second Chair Stand Test. Secondary outcomes are feasibility (compliance and adherence to intervention), objective and patient-reported functional measures (6-meter and 10-meter gait speed; 6-min Walk Test; Handgrip Strength; Stair Climb Test; Physical Activity Questionnaire), symptom burden and well-being (MD Anderson Symptom Inventory; Hospital Anxiety and Depression Scale), quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 and B23), body composition (dual-energy X-ray absorptiometry scan), side effects, inflammatory biomarkers, hospitalisation and survival. ETHICS AND DISSEMINATION:The protocol was reviewed and accepted by the Scientific Ethics Review Committee of the Capital Region of Denmark, 17 June 2018 (VEK ref.: H-18021013). Trial results will be submitted for publication in a peer-reviewed journal and presented on conferences, in oncology wards, exercise centres in municipalities and patient organisations, ensuring dissemination to relevant stakeholders. TRIAL REGISTRATION NUMBER:https://clinicaltrials.gov/ on 3 September 2018. Identifier: NCT03656731.

Project description:BackgroundIt is often only when the initial signs of exhaustion appear that caregivers first may engage in help-seeking behavior, but it is difficult for them to know which is the most appropriate formal service in their situation. Electronic health (eHealth) can support caregivers in keeping the older person they are caring for at home, but few eHealth tools designed for supporting the process of help-seeking by caregivers of functionally impaired older persons have been developed using a co-design approach.ObjectiveThis paper aims to describe the protocol of a project that tries to assist caregivers to target their needs and those of the older person they support early in their help-seeking process, and guide them effectively to the formal service most appropriate for their situation. This project aims to answer the following questions: (1) What type of tool can better support caregivers to identify their needs and those of the older person they are caring for and then refer them to an appropriate formal service? and (2) What information should be found in such a tool?MethodsThis study presents a description of the process of an ongoing multicenter research project based on a co-design approach, which includes 3 phases (1) identification of caregivers' needs in terms of tools to support their help-seeking behavior, (2) development of a tool, and (3) evaluation of its usability.ResultsThe project began in January 2016 with the ethics application for the 3 phases of the project. For phase 1, recruitment began in December 2016 and ended in September 2017. Phase 2 began in the spring of 2017 and ended in June 2018. All the co-design sessions have been completed. Phase 3 of the project will begin in September 2018.ConclusionsAlthough there are some challenges associated with this type of methodology, the methodology still remains relevant, as it involves future users in the development of a tool, which increases the chances that the tool will meet the users' needs.International registered report identifier (irrid)DERR1-10.2196/11634.

Dataset Information

Supporting breast cancer screening decisions for caregivers of older women with dementia: study protocol for a randomized controlled trial.

Publications

Supporting breast cancer screening decisions for caregivers of older women with dementia: study protocol for a randomized controlled trial.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets