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. HF interventions have not specifically targeted patients' symptom burden, comorbid depression, and adjustment to a limited and uncertain future. While palliative care is often thought of as being applicable only to dying patients, its focus on alleviating symptoms, addressing psychosocial comorbidity, and helping patients live with serious illness may benefit veterans before they reach the terminal stage of their illness. Accordingly, the research aims of this CDA application are to develop and conduct preliminary testing of a palliative care intervention for veterans with HF.
Aim 1. Quantify symptom management needs in a large cohort of veterans with HF.
(1a) Determine prevalence of and distress from prototypical HF symptoms (e.g., shortness of breath, fatigue) and other symptoms (e.g., pain, constipation, nausea)
(1b) Examine the relationship between symptoms and quality of life outcomes to inform development of the palliative care intervention
Aim 2. Conduct a qualitative study to learn what supportive care would help reduce distress and improve quality of life in veterans with symptomatic HF and their informal caregivers.
Aim 3. Build on Aims 1 and 2 to conduct a pilot implementation of palliative care in HF.
Aim 1: Measures of symptoms, anxiety, quality of life and spiritual well-being were added to the Patient Centered Disease Management for Heart Failure Trial (CCN 06-068). Symptom prevalence, symptom distress, and number of symptoms reported will be analyzed using descriptive statistics. The relationship between symptoms and quality of life outcomes will be analyzed using multivariable regression models.
Aim 2: We interviewed 33 adult outpatients with symptomatic HF using purposive sampling and 20 of their family caregivers. Interviews were transcribed verbatim and analyzed using the constant comparative method. We described participants' major concerns and needs and explored whether and how palliative care would be useful to them.
Aim 3: We conducted a pilot randomized controlled trial to examine the acceptability and feasibility of a palliative care intervention for patients with HF. Feasibility was measured using the cohort retention rate, medical recommendation implementation rate, missing data, and quality of care. Acceptability was measured using an end-of-study semi-structured participant interview. In addition, a developmental formative evaluation was conducted by interviewing VA health care providers and leaders to identify facilitators and barriers of intervention implementation.
Not yet available.
This research will contribute to our understanding of how to improve quality of life for the large and growing number of veterans with HF and their informal (family) caregivers. The intervention being tested has the potential to improve veteran well-being while reducing hospitalizations and VA costs. It is likely to be generalizable to other chronic conditions with similar symptoms and illness trajectories, such as chronic lung disease. I am collaborating with CHF-QUERI on these endeavors to foster collaboration with VA operations and to facilitate implementation and dissemination of my work.
External Links for this Project
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- Burke RE, Jones J, Ho PM, Bekelman DB. Caregivers' perceived roles in caring for patients with heart failure: what do clinicians need to know? Journal of cardiac failure. 2014 Oct 1; 20(10):731-8. [view]
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- Fischer SM, Bekelman D, Bailey FA. Family Assessment of Quality of Care in the Last Month of Life. JAMA internal medicine. 2016 Aug 1; 176(8):1102-4. [view]
- Bekelman DB, Nowels CT, Retrum JH, Allen LA, Shakar S, Hutt E, Heyborne T, Main DS, Kutner JS. Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs. Journal of palliative medicine. 2011 Dec 1; 14(12):1317-24. [view]
- Peterson PN, Shetterly SM, Clarke CL, Bekelman DB, Chan PS, Allen LA, Matlock DD, Magid DJ, Masoudi FA. Health literacy and outcomes among patients with heart failure. JAMA. 2011 Apr 27; 305(16):1695-701. [view]
- Bradley SM, Stanislawski MA, Bekelman DB, Monteith LL, Cohen BE, Schilling JH, Hunt SC, Milek D, Maddox TM, Ho PM, Shore S, Varosy PD, Matthieu MM, Rumsfeld JS. Invasive coronary procedure use and outcomes among veterans with posttraumatic stress disorder: insights from the Veterans Affairs Clinical Assessment, Reporting, and Tracking Program. American heart journal. 2014 Sep 1; 168(3):381-390.e6. [view]
- Bekelman DB, Nowels CT, Allen LA, Shakar S, Kutner JS, Matlock DD. Outpatient palliative care for chronic heart failure: a case series. Journal of palliative medicine. 2011 Jul 1; 14(7):815-21. [view]
- Boersma I, Jones J, Carter J, Bekelman D, Miyasaki J, Kutner J, Kluger B. Parkinson disease patients' perspectives on palliative care needs: What are they telling us? Neurology. Clinical practice. 2016 Jun 1; 6(3):209-219. [view]
- 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. [view]
- Retrum JH, Nowels CT, Bekelman DB. Patient and caregiver congruence: the importance of dyads in heart failure care. The Journal of cardiovascular nursing. 2013 Mar 1; 28(2):129-36. [view]
- Matlock DD, Nowels CT, Bekelman DB. Patient perspectives on decision making in heart failure. Journal of cardiac failure. 2010 Oct 1; 16(10):823-6. [view]
- Bekelman DB, Plomondon ME, Sullivan MD, Nelson K, Hattler B, McBryde C, Lehmann KG, Potfay J, Heidenreich P, Rumsfeld JS. Patient-centered disease management (PCDM) for heart failure: study protocol for a randomised controlled trial. BMC cardiovascular disorders. 2013 Jul 9; 13:49. [view]
- Bekelman DB, Plomondon ME, Carey EP, Sullivan MD, Nelson KM, Hattler B, McBryde CF, Lehmann KG, Gianola K, Heidenreich PA, Rumsfeld JS. Primary Results of the Patient-Centered Disease Management (PCDM) for Heart Failure Study: A Randomized Clinical Trial. JAMA internal medicine. 2015 May 1; 175(5):725-32. [view]
- 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. [view]
- Jones J, Nowels CT, Sudore R, Ahluwalia S, Bekelman DB. The future as a series of transitions: qualitative study of heart failure patients and their informal caregivers. Journal of general internal medicine. 2015 Feb 1; 30(2):176-82. [view]
- Hoth KF, Wamboldt FS, Ford DW, Sandhaus RA, Strange C, Bekelman DB, Holm KE. The social environment and illness uncertainty in chronic obstructive pulmonary disease. International Journal of Behavioral Medicine. 2015 Apr 1; 22(2):223-32. [view]
- Lum HD, Jones J, Lahoff D, Allen LA, Bekelman DB, Kutner JS, Matlock DD. Unique challenges of hospice for patients with heart failure: A qualitative study of hospice clinicians. American heart journal. 2015 Sep 1; 170(3):524-30.e3. [view]
- Bekelman D, Peterson J, Johnson RA. Expanding the Reach of Palliative Care to Heart Failure: The CASA Randomized Clinical Trial Intervention and Study Population. Poster session presented at: American Public Health Association Annual Meeting and Exposition; 2016 Oct 30; Denver, CO. [view]
- Bekelman D, Nowels C, Ahluwalia S, Jones J. Living with the future of chronic heart failure. Poster session presented at: VA HSR&D National Meeting; 2011 Feb 16; Washington, DC. [view]
Health Systems, Cardiovascular Disease
Chronic heart failure