Implementing a Clinic-Based Telehealth Support Service (FamilyStrong) for Family Caregivers of Individuals with Grade IV Brain Tumors

Dionne‐Odom, J. Nicholas; Williams, Grant R.; Warren, Paula; Tims, Sheri; Huang, Chao-Hui; Taylor, Richard A.; Ledbetter, Leslie; Lever, Trevor; Mitchell, Kelsey; Thompson, Moneka; Dosse, Chinara; Engler, Sally; Holmes, Amy P.; Connelley, Billy; Hicks, Jennifer; Bakitas, Marie; Nabors, Burt; Tucker, Rodney

doi:10.1089/jpm.2020.0178

Cited by 18 publications

(29 citation statements)

References 17 publications

(20 reference statements)

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“…We found that we could increase scalability while maintaining high-quality support for family caregivers using a lay navigation model of telehealth support. Dionne-Odom and colleagues [42][43][44][45][46][47] developed Project ENABLE Cornerstone based on a series of studies examining cancer family caregivers' needs, especially in Black and rural underserved populations. In Cornerstone, trained lay navigators are overseen by specialist palliative care clinicians and provide family care partners with a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, selfcare, and preparing for the future/advance care planning.…”

Section: Providing Evidence-based Palliative Care Via Telehealthmentioning

confidence: 99%

Telehealth Strategies to Support Patients and Families Across the Cancer Trajectory

Bakitas

Cheville

Mulvey

et al. 2021

American Society of Clinical Oncology Educational Book

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Effective delivery of cancer care via telehealth requires a planned care system that accounts for myriad patient, provider, and practice/cancer center resources before, during, and after the care episode. Telehealth is broadly defined as a method to have virtual, bidirectional communication between patients and providers. Telehealth can include methods such as audio-only, video-consultation, and tele-monitoring, which can occur in a synchronous, asynchronous, or blended format. The purpose of this review is to present common foundational principles for providing clinical cancer care via telehealth, followed by an overview of three distinct examples of comprehensive telehealth programs that have been developed to meet the needs of patients and families across the cancer trajectory, including survivorship, rehabilitation, and palliative care phases. The programs described are exemplars that were developed and implemented prior to the coronavirus pandemic, so they reflect many years of planning and evidence. Lessons learned include the need for ongoing patient support, clinician training, and cancer health system/practice programmatic considerations such as billing, scheduling, reimbursement, software, and hardware/platform security. Although the COVID-19 pandemic produced an explosive shift in regulations and implementation, sustainability of these changes may not be long-term. Nevertheless, a permanent shift in cancer care to include telehealth is likely here to stay.

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Section: Providing Evidence-based Palliative Care Via Telehealthmentioning

confidence: 99%

Telehealth Strategies to Support Patients and Families Across the Cancer Trajectory

Bakitas

Cheville

Mulvey

et al. 2021

American Society of Clinical Oncology Educational Book

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“…These weekly sessions were followed by monthly check‐in calls for 24 weeks to address any new or ongoing issues. All calls included caregiver distress screening, which we adapted in our prior work from National Comprehensive Cancer Network patient distress screening 21,26 . Coaches facilitated problem‐solving and goal‐setting support for caregivers who desired assistance with issues noted in distress screening 27 .…”

Section: Methodsmentioning

confidence: 99%

A lay navigator‐led, early palliative care intervention for African American and rural family caregivers of individuals with advanced cancer (Project Cornerstone): Results of a pilot randomized trial

Dionne-Odom

Azuero

Taylor

et al. 2021

Cancer

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Background The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone—a lay navigator‐led, early palliative care telehealth intervention for African American/Black and/or rural‐dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188). Methods This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid‐tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20‐minute to 60‐minute telehealth coaching sessions plus monthly follow‐up for 24 weeks, reviewing skills in stress management, self‐care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks. Results Sixty‐three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, −2.29; Cohen d, −0.32). The mean between‐group difference scores in caregiver quality of life was −1.56 (usual care − intervention; d, −0.07). Similar outcome results were observed for patient participants. Conclusions The authors piloted ENABLE Cornerstone, an intervention for African American and rural‐dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising. Lay Summary To date, very few programs have been developed to support under‐resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented.

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“…While one study of 600 stage IV cancer patients and 346 caregivers demonstrated that patients found communication with physicians to be well-executed compared to caregivers' opinions, both groups reported worse perceptions of physician communication and care coordination when anxious ( 105 ). Dionne-Odom et al examined outcomes following implementation of a clinic-based telemedicine support system (FamilyStrong) for caregivers of patients with grade IV brain tumors ( 106 ). A palliative care nurse interfaced with caregivers on a weekly basis, evaluating for distress and advocating for various support services, including local counseling services and coordinating with the primary neuro-oncology team for patient care needs.…”

Section: Role Of Multidisciplinary Care and Palliative/supportive Car...mentioning

confidence: 99%

Quality of Life and Role of Palliative and Supportive Care for Patients With Brain Metastases and Caregivers: A Review

Colón

Lim

2022

Front. Neurol.

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Brain metastases (BM) are the most commonly diagnosed secondary brain lesions in adults, influencing these patients' symptoms and treatment courses. With improvements in oncologic treatments, patients with BM are now living longer with their advanced cancers, and issues pertaining to quality of life become more pressing. The American Society of Clinical Oncology has recommended early implementation of palliative care for cancer patients, though incorporation and implementation of palliative and other supportive services in the setting of true multidisciplinary care requires additional attention and research for patients with intracranial metastases. We review the physical, cognitive, and psychosocial challenges patients with BM and their caregivers face during their cancer course as well as the current published research on quality of life metrics relating to this patient population and the diverse roles specialty palliative care, rehabilitation services, and other healthcare providers play in a comprehensive multidisciplinary care model.

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Implementing a Clinic-Based Telehealth Support Service (FamilyStrong) for Family Caregivers of Individuals with Grade IV Brain Tumors

Cited by 18 publications

References 17 publications

Telehealth Strategies to Support Patients and Families Across the Cancer Trajectory

Telehealth Strategies to Support Patients and Families Across the Cancer Trajectory

A lay navigator‐led, early palliative care intervention for African American and rural family caregivers of individuals with advanced cancer (Project Cornerstone): Results of a pilot randomized trial

Quality of Life and Role of Palliative and Supportive Care for Patients With Brain Metastases and Caregivers: A Review

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