Abstract
Background:
Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent.
Objective:
To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors.
Methods:
This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support.
Results:
Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%).
Discussion:
The FamilyStrong Program is among the first “real world” oncology clinic-based formal support services for advance cancer family caregivers.
Introduction
There are an estimated 2.8 million family and close friends who care for someone with cancer in the United States. 1 Providing unpaid support to a family member or friend with cancer can be extraordinarily stressful, 2 time consuming, 3 and include the daily performance of numerous complex medical and nursing tasks for which individuals are not formally trained. 4 While cancer centers and palliative care services play a central role in the care of patients, a report by the National Academy of Medicine on family caregiving highlights that the existence of clinic-based formal support services for caregivers that proactively screen, assess, and provide structured support are sparse and nearly nonexistent, 5 despite the growing list of effective evidence-based interventions.6–9
To address this need and to become a pioneer among U.S. health care systems, the Caregiver and Bereavement Support (CBS) Service was officially established within the Center for Palliative and Supportive Care at the University of Alabama at Birmingham (UAB) in October 2017. The CBS Service functions as a clinical incubator for ambulatory services and the greater UAB Health System that provides individual departments and patient service lines with implementation consultation and assistance with start-up, training, and programmatic development of formal support services for family caregivers that are integrated within each hospital department's existing work flow and personnel.
The CBS Service is led by two codirectors (J.N.D.-O, G.R.W.), with strategic direction and guidance provided by an interdisciplinary steering committee that includes palliative care, oncology, nursing, medicine, social work, chaplaincy, psychology, navigation, marketing, and health care administration, as well as family caregivers. The strategic mission of the CBS Service is to optimize the well-being and support skills of family members whose day-to-day lives are affected by someone close to them dealing with serious life-threatening illness from diagnosis through grief and bereavement.
Among the first major initiatives of the CBS Service was a partnership with the UAB Division of Neuro-Oncology within the Department of Neurology to pilot test a palliative care nurse-led distress screening service, called FamilyStrong, for family caregivers of patients with newly-diagnosed glioblastoma, a caregiver population with known high stress and burden.10,11 The purpose of this article is to describe the FamilyStrong service and the first-year experiences and outcomes of piloting the service with neuro-oncology patients' family caregivers.
Methods
Design
This is a retrospective evaluation of operational outcomes of the UAB Neuro-Oncology FamilyStrong Service using UAB Center for Palliative and Supportive Care clinical databases from August 2018 to December 2019. The UAB Institutional Review Board reviewed and approved this evaluation.
The UAB neuro-oncology FamilyStrong service
The FamilyStrong service is based conceptually on caregiver assessment domains recommended by the Family Caregiver Alliance, 12 guidelines for psychosocial and bereavement support of family caregivers in palliative care,13,14 and on the Pearlin Stress Process Model of Family Caregiving. 15 Operational principles and format of the service (e.g., assessment, work flow, charting practices, legal, and compliance) were developed based on early palliative care caregiver intervention work by members of the CBS Steering Committee16,17 and through consultation with and site visit observations of the Gordon Murray Caregiver Program at the University of California–San Francisco, one of the few other clinic-based formal support services for family caregivers in the United States.
The FamilyStrong service began enrolling caregivers in August 2018. FamilyStrong is led by a palliative care-trained nurse (S.T.) who works approximately one day/week on the service, has board certification in hospice and palliative care nursing, and has 14 years of experience in home hospice and three years of experience in early palliative care telehealth. Every one to two weeks, the nurse reviews the outpatient clinic schedules and notes in the electronic medical record of partnering neuro-oncologists for patients with recently-diagnosed grade IV brain tumors.
After obtaining permission from the patient's neuro-oncologist, the nurse approaches patients and their accompanying family members in the waiting room prior their outpatient appointment to describe and enroll interested family members into the FamilyStrong program. As part of enrollment, patients sign a UAB legal and compliance-approved waiver form allowing FamilyStrong staff to interact with family members for the purposes of obtaining family support, information, and resources.
Once enrolled, the palliative care nurse has caregivers provide basic demographic information and begins performing distress screening either in person or by telephone on an approximately monthly basis. FamilyStrong distress screening uses a caregiver distress thermometer (Fig. 1) adapted from the National Comprehensive Cancer Network (NCCN) Patient Distress Thermometer 18 and based on similar other published caregiver screening measures,19,20 feedback from the UAB CBS Service Steering Committee, and the first author's (J.N.D.-O.) intervention trial work. 17
UAB caregiver and bereavement support service family distress thermometer. UAB, University of Alabama at Birmingham.
Caregivers are asked on a scale from 0 (no distress) to 10 (extreme distress) what their distress level has been over the past week. If 4 or higher, the nurse asks caregivers to identify what problems from the problem list on the distress screening tool have been bothering them, including which problem bothers them the most and what problems they would like assistance with. Based on identified problems, the nurse then provides vetted educational materials from UAB, local, or national organizations (e.g., American Cancer Society, Family Caregiver Alliance) and/or referrals to existing internal and external services (e.g., psychosocial services, financial counseling, community support groups). Reflective of follow-up protocols in NCCN patient distress screening, 18 if distress thermometer scores are less than 4, then the nurse follows up with the caregiver to perform a new distress screening in four to six weeks. If the score is 4 to 7, the nurse offers to follow-up with the family member in the next seven days to do a follow-up screening; if 8 or higher, the nurse offers to follow up in 48 hours.
In addition to distress screening, the FamilyStrong nurse also performs a comprehensive assessment at enrollment and every three months. The assessment includes: a short depression and anxiety screen (the Patient Health Questionnaire-2 and General Anxiety Disorder-2), caregiver resource use questions (e.g., assistance with shopping, cooking, transportation; time off work; out-of-pocket costs), caregiver-reported patient resource use questions (e.g., hospital and ICU days, ED admissions, advance directive completion), and prognostic and treatment understanding questions (e.g., likelihood that your relative will be cured of cancer). For patients who died, an afterdeath assessment was completed to assess end-of-life health care utilization (e.g., time in ICU, hospital before death, receipt of cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings before death) and caregiver distress. These comprehensive and afterdeath assessments are intended to be both a quality metric of the program's effectiveness and a prompt for conversations with the FamilyStrong nurse about possible additional educational and referral services that may be of interest to the caregiver.
Additional oversight of the service included weekly case review with the CBS Codirectors, a board certified hospice and palliative care advanced practice nurse (J.N.D.-O.) and gastrointestinal oncologist with specialty training in geriatrics (G.R.W.), and the Division Director of the UAB Division of Neurology (B.N.). FamilyStrong enrollment and operational metrics were also presented to the CBS Service Steering Committee for feedback and recommendations on an every other month basis.
Data sources
We report data from two sources: the hospital electronic medical record to report patient demographic characteristics (age, gender, and race) and the UAB Center for Palliative and Supportive Care CBS Service database, in which the nurse documented caregiver demographics, all encounters, distress screenings, and both comprehensive and afterdeath assessments.
Analysis
All data were exported into Excel, deidentified, and analyzed using the Statistical Package for Social Sciences, Version 25 (SPSS, Inc., Chicago, IL). All computations are presented as descriptive statistics, including raw totals and percentages, means or medians, standard deviations, and ranges.
Results
Demographics
From August 2018 to December 2019, a total of 53 caregivers were enrolled into the FamilyStrong Service. Enrolled caregiver characteristics are shown in Table 1. Family caregivers were on average 53.5 years old (SD: 13.0, range: 26–74) and predominantly female (n = 33 [62.3%]), White (n = 45 [84.9%]), college educated (n = 28 [52.8%]), and the spouse/partner of the patient (n = 42 [79.3%]). Caregivers provided support to patients an average of 11.2 hours per day, and most (n = 46 [86.8%]) provided this support every day of the week. As shown in Table 2, all patients had WHO grade IV brain cancer and were on average 51.9 years old (SD: 13.9, range: 21–72). Just over half were male (n = 31 [58.5%]), and most were White (n = 46 [86.8%]).
FamilyStrong Family Caregiver Demographic and Background Characteristics (N = 53)
GAD, Generalized Anxiety Disorder; SD, standard deviation.
Patient Demographic and Background Characteristics (N = 53)
Operational outcomes
FamilyStrong operational metrics are shown in Table 3. As of the end of December 2019, the CBS FamilyStrong nurse had completed 277 phone calls (excluding missed calls and voicemails) with 53 enrolled family caregivers. Of the 277 phone calls, 235 included a distress thermometer screening that averaged 11.4 minutes/call. Enrolled individuals received an average of 4.4 distress screenings (although many continued to be active in the program as of December 2019). Of the 235 distress thermometer screenings, 107 (45.5%) indicated instances of moderate distress with scores ranging from 4 to 7 and 31 (13.2%) indicated high distress with scores ranging from 8 to 10.
FamilyStrong Operational Metrics (August 2018–December 2019; N = 53)
ACP, advance care planning; UAB, University of Alabama at Birmingham.
A wide range of distress screening problems (see Fig. 1 for all problem categories) were endorsed as most bothersome and/or most in need of assistance with. Out of the 35 possible distress thermometer problem categories, 28 were endorsed at least once by one or more caregivers. The most frequently endorsed problems that bothered caregivers the most were issues related to their relative's health condition and symptoms (n = 27 [51%]), work (n = 12 [23%]), the effort and time spent assisting with the patient's activities of daily living (n = 11 [21%]), coordinating care/services (n = 10 [19%]), and planning for the future/advance care planning (n = 10 [19%]). The most frequently endorsed problems that caregivers wanted assistance with were issues related to their relative's health condition and symptoms (n = 15 [28%]), coordinating care/services (n = 11 [21%]), planning for the future/advance care planning (n = 9 [17%]), and sadness (n = 9 [17%]).
Out of 53 caregivers, 47 (89%) completed at least one comprehensive assessment. In total, 61 comprehensive assessments were performed by the palliative care nurse, which on average took 25.8 minutes to complete. Eleven (21%) caregivers completed afterdeath assessments that took on average 31.8 minutes to complete.
Based on distress screenings and assessments, a total of 211 documented actions of caregiver assistance were provided by the palliative care nurse. This included 68 documented instances of providing emotional support (e.g., conveying empathy, validating and normalizing emotions), 58 instances of providing information (e.g., lists of support groups, local durable medical equipment providers) or educational material, 41 communications (e.g., by e-mail, electronic medical record messaging, or phone) to the neuro-oncology care team to relay information about patient and caregiver issues, 20 instances of providing problem-solving and/or action planning support, 15 referrals to UAB counselors and/or pastoral services, and 9 referrals to external services/supports (e.g., durable medical equipment vendors, community-based support groups).
Discussion
In health systems across the United States, there are very few structured clinic-based services to systematically assess, support, and train family who provide complex medical care to relatives with serious illness.5,21 We implemented a nurse-led telehealth clinic-based support service for family caregivers of patients recently diagnosed with WHO grade IV brain cancer (FamilyStrong) that provides distress screening and support from initial diagnosis through grief and bereavement. Our first-year operational results show that an integrated formal support service that proactively identifies and enrolls caregivers was able to address a wide range of distressing caregiving problems and respond with time efficient yet personalized emotional, educational, problem solving, and referral support.
Our findings highlight how widely caregiver needs can vary, even when limited to a single cancer type and grade, and yet, how a brief distress screening can quickly identify caregiving issues. The FamilyStrong palliative care nurse addressed 28 different problem categories and, in response, provided a range of supportive actions, including offering emotional support, providing basic information and education, communicating with the neuro-oncology care team, providing problem-solving support, and facilitating internal and external referrals. The ability to address and respond to this wide range of caregiver issues was facilitated expeditiously by a brief distress screening tool adapted for family caregivers. Our success in integrating comprehensive and yet efficient caregiver assessment answers one of the priority translation-to-practice challenges highlighted by the National Academy of Medicine 5 and others. 21
The implementation and design of the FamilyStrong Service demonstrates a number of strong features that enhance its feasibility and potential for widespread scalability and “real world” uptake. First, this program was able to service a sizable cohort of family caregivers (n = 53) from diagnosis through grief and bereavement and deliver a robust amount of assistance (211 documented actions of caregiver assistance) by a nurse working only one day a week. Given the scope of the problems assessed and services delivered, we believe that this service could be seamlessly integrated into the normal workflow of a social worker or clinical care coordinator who already spends considerable time working with families as part of routine care. Even lay navigators or community health workers, with appropriate supervision, could potentially lead this service as has been demonstrated by ourselves and others in a research context.17,22
Second, the distress screening and support encounter was brief and time efficient, taking on average only 11½ minutes per encounter. Furthermore, because of the largely telehealth delivery approach, the timing of the calls could be arranged at a time convenient for both the nurse and the caregiver. Third, the types of support given often leveraged already existing services and supports, such as referrals to UAB counseling and financial assistance services. Hence, the FamilyStrong Service model synergizes with existing resources without unnecessarily duplicating or competing with related services.
The experiences gained from implementing the FamilyStrong Service offer invaluable operational insight to others interested in developing services for family caregivers. First, we learned that there are limitations with what can and cannot be assessed and intervened on with family caregivers because of the simple fact that they are not technically “patients” who fall under the scope of practice guidelines for licensed health care professionals (although family members can certainly be referred to providers and counselors and be officially admitted as a patient in the system). We would recommend that individuals consult with their institution's legal and compliance departments to vet and adapt distress screening tools and support protocols, presenting and highlighting the service as an extension of patient and family-centered care.
Second, documentation of caregiver encounters is necessary and yet can be challenging to build into the electronic medical record system. We recommend that individuals develop working relations with their health system IT departments to strategize how caregiver encounter information can be recorded and stored. We would also recommend tracking the outcomes of referrals and communications with entities outside of the program, such as the oncology team, to further ascertain how different problem areas are being managed, which our own program has planned to track going forward.
Third, one of the largest barriers to integrating formal caregiver support is the lack of reimbursement and payment mechanisms.5,21 Hence, consistent with national recommendations, we believe that it is important for a caregiving support service to record patient health care utilization and other patient outcomes to have data to show impact on patients and examine potential cost savings. 23 This was largely (although not wholly) the purpose of our comprehensive and afterdeath assessments with our participating family caregivers. Because this evaluation focuses on the operational outcomes of FamilyStrong, we do not report these data here; however, they are being presented to UAB Health System department leaders and administrators to garner long-term institutional support for the service. Based, in part, on these data, the UAB neuro-oncology clinic was able to apply for and received support to hire a full-time social worker who will be taking over the FamilyStrong Service in 2020 and beyond.
Conclusions
We implemented one of the first scalable “real world” clinic-based proactive support services for family caregivers of patients with grade IV brain cancers. This represents a significant first step in overcoming major obstacles to translating evidence-based caregiver interventions into clinical settings and practice. Supporting and sustaining further efforts like these is critical in the coming decades as we increasingly rely on family caregivers to be the frontline lay “workforce” providing complex care to a growing population of individuals with advanced cancers.
Footnotes
Acknowledgments
The authors are sincerely grateful to the leaders and staff of the UCSF Gordon Murray Caregiver Program, including Susan Chang, MD, Margaretta Page, RN, MS, and Rosemary Rossi, MSW, for guidance and consultation in development of the UAB CBS Service.
Disclaimer
The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Funding Information
Dr. Dionne-Odom is supported by the National Institute of Nursing Research (R00NR015903), the National Cancer Institute (R37CA252868), the National Palliative Care Research Center (no grant no.), and the Gordon and Betty Moore Foundation (no grant no.). Dr. Williams is supported by the National Cancer Institute (K08CA234225).
Author Disclosure Statement
No competing financial interests exist.