Chronic heart failure (HF) is a leading cause of disability, hospitalization, death, and costs in the VA. HF is characterized by bothersome and persistent symptoms (e.g., shortness of breath and fatigue), depression, and an uncertain illness course with high mortality. However, HF interventions have not specifically targeted patients' symptom burden, comorbid depression, and adjustment to a limited and uncertain future.
The objectives of this study were to (1) quantify symptom management needs in a large cohort of veterans with HF, and (2) develop and conduct preliminary testing of a supportive care intervention for veterans with HF.
We added measures to the VA Merit Review (CCN 06-068-3) trial "Patient-Centered Disease Management for HF" (PCDM trial) to (1) determine the prevalence of and distress from prototypical HF symptoms (e.g., shortness of breath, fatigue) and other symptoms (e.g., pain, constipation, nausea) and to (2) examine the relationship between symptoms and quality of life outcomes. These results contributed to the development of the intervention which included (1) palliative symptom management of fatigue, breathlessness, depression and pain, and (2) a psychosocial intervention to help patients adjust to the limitations and uncertain future of HF.
In order to determine whether the proposed intervention above met heart failure patient and family caregiver needs, and added to the disease management that had been tested in the PCDM trial, we used qualitative interviews of a convenience sample of patients with heart failure and their informal (family) caregivers who were completing the intervention arm of the PCDM trial.
Dr. Bekelman was funded by QUERI RRP 11-239 to conduct a a pilot study of the intervention. We are used qualitative and quantitative methods to: (1) determine feasibility (participation rates, cohort retention, acceptability, and satisfaction), (2) determine intervention provider adherence to the standardized study protocol, and (3) estimate intervention effects by measuring health status, depression, and symptoms before and 3-months after the intervention.
Study 1: PCDM trial symptom/quality of life analyses
One paper is in draft form. This paper examines whether diverse physicial symptoms, spiritual well-being, and depression are independent predictors of heart failure-specific health status over 1 year. We found that these patient-reported factors explain 29% of the variance in health status after adjusting for demographic and clinical covariates. This finding highlights the opportunity to determine whether addressing these aspects of the patient experience can improve health status in heart failure.
We are in the analysis phase for a second paper. The goals of this paper are to identify trajectory patters of patient-reported health status in chronic heart failure, and to identify potentially modifiable predictors of health status trajectory patters in chronic heart failure. To answer these research questions, we will use growth mixture modeling. This will add to current work by identifying patients who are at highest risk of declining or persistently poor health status, and what modifiable factors could be addressed to potentially improve health status in high risk subpopulations. By providing this information, this publication will provide data for interventions and grant proposals to identify and target those with poor health status trajectory patterns in heart failure. In addition, this project will provide the empirical framework to tailor palliative care interventions/resources to health status trajectory patterns in heart failure.
Study 2: POST-PCDM TRIAL INTERVIEWS
12 patient interviews and 7 family caregiver interviews were completed. Overall, both supported the proposed intervention. To improve quality of life, patients identified the importance of addressing a variety of symptoms not traditionally associated with heart failure, such as pain. They also confirmed that adjusting to the limitations of illness was important, a key component of the proposed intervention. Nearly all patients rated the likelihood of participating in the nurse component of the intervention as between 8 and 10 out of 10 (10 meaning the most likely to participate, 0 meaning the least likely). Nearly all patients rated the likelihood of participating in the social work component of the intervention as between 9 and 10. This data was used as preliminary data for VA QUERI RRP 11-239.
Study 3. PILOT STUDY
One paper has been published in the Journal of Palliative Medicine (Bekelman DB et al, 2014). This paper reported on the the feasibility and acceptability of CASA. 17 patients participated in the study. Participants were male with a median age of 63 years. One withdrew early and there were <5% missing data. Overall, 81% of 102 collaborative care team medical recommendations were implemented. All participants who screened positive for depression were either treated for depression or thought to not have a depressive disorder. In the qualitative interviews, patients reported a positive experience and provided several constructive critiques.
We concluded that the CASA intervention was feasible based on participant enrollment, cohort retention, implementation of medical recommendations, minimal missing data, and acceptability. Several intervention changes were made based on participant feedback.
A second paper describing intervention implementation issues is under review. We conducted semi-structured qualitative interviews with health care providers and local, regional, and national operational health system leaders from the Veterans Administration (VA) health care system. The CASA intervention was described to participants and interviewees were asked a set of implementation relevant semi-structured questions developed using all five major domains from the Consolidated Framework for Implementation Science (CFIR) (i.e., intervention, inner and outer setting, individuals, process). Interviews were analyzed using an iterative team-based directed content analysis.
Seventeen of 23 providers and leaders (74%) who were contacted participated in the study. Most providers and leaders perceived the CASA intervention as high priority and meeting an important need in the VA given the high health care utilization and costs in heart failure and its patient-centeredness. The lack of performance measures for patient-centered care processes and outcomes related to heart failure was perceived as a potential barrier to intervention implementation. Intervention features viewed as important for successful implementation included having strong coordination and communication with providers, ease of integration into ongoing programs, and evidence of improving quality of care and cost-effectiveness. Participants also provided constructive feedback on intervention structure, content, and processes, issues are not explicitly described in CFIR.
We concluded that factors perceived by stakeholders as facilitating CASA's adoption and implementation included: CASA's close alignment with other local programs, evidence that makes a strong clinical and business case for CASA, and flexibility and ease of integration of CASA into current structures and processes. The lack of patient-centered performance measures for CASA's target condition, heart failure, was viewed as a potential barrier to its adoption. We also thought that expanding CFIR to include an explicit assessment of intervention structure, content, and process could improve CFIR's usefulness.
This funding allowed Dr. Bekelman to develop and conduct pilot testing of a novel intervention to improve quality of life in Veterans with heart failure. In addition, using project funds, Dr. Bekelman found new information on ways to improve quality of life in heart failure. During the project period, Dr. Bekelman successfully obtained funding to examine the effectiveness of the intervention (NIH R01NR013422). These findings are useful to VA providers because they address the clinical care of Veterans with advanced heart failure. The findings are useful to Veterans as they address issues important for Veterans, such as improving symptoms and living with illness.
- Kluger BM, Shattuck J, Berk J, Sebring K, Jones W, Brunetti F, Fairmont I, Bowles DW, Sillau S, Bekelman DB. Defining Palliative Care Needs in Parkinson's Disease. Movement disorders clinical practice. 2019 Feb 1; 6(2):125-131.
- Bekelman DB, Rabin BA, Nowels CT, Sahay A, Heidenreich PA, Fischer SM, Main DS. Barriers and Facilitators to Scaling Up Outpatient Palliative Care. Journal of palliative medicine. 2016 Apr 1; 19(4):456-9.
- Jones J, McDermott CM, Nowels CT, Matlock DD, Bekelman DB. The experience of fatigue as a distressing symptom of heart failure. Heart & lung : the journal of critical care. 2012 Sep 1; 41(5):484-91.
- Matlock DD, Nowels CT, Masoudi FA, Sauer WH, Bekelman DB, Main DS, Kutner JS. Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study. Pacing and Clinical Electrophysiology. 2011 Dec 1; 34(12):1634-44.