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IIR 14-346 – HSR&D Study

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IIR 14-346
Palliative Care to Improve Quality of Life in CHF and COPD
David Bekelman MD MPH
Rocky Mountain Regional VA Medical Center, Aurora, CO
Aurora, CO
Funding Period: July 2016 - December 2020

Chronic heart failure (CHF), interstitial lung disease (pulmonary fibrosis or ILD) and chronic obstructive pulmonary disease (COPD) have commonalities that make them ideal for early palliative care provided alongside disease-specific treatments. Quality of life is reduced in these illnesses because, despite disease-specific treatments, the same symptoms (e.g., shortness of breath, fatigue) often persist in CHF, ILD and COPD. Quality of life is also reduced because between 50-60% of patients with these illnesses have clinically significant depressive symptoms. Finally, few Veterans with these illnesses engage in advance care planning.

We will conduct a hybrid effectiveness and implementation study to determine whether the benefits of early palliative care extend to CHF, ILD, and COPD.

Aim 1: Determine the effect of the Advancing Symptom Alleviation with Palliative Treatment (ADAPT) intervention on (a) quality of life as a primary outcome, and (b) depression, symptom burden, advance care planning communication and documentation, disease-specific health status, emergency department visits, hospitalizations, and mortality as secondary outcomes.

Aim 2: Examine the implementation of the ADAPT intervention.

Aim 2a: Assess the degree, barriers, and facilitators of implementation of various intervention components. Identify which intervention components and processes are most critical from the perspectives of patients, intervention team members, and primary care providers whose patients received the intervention.

Aim 2b. Evaluate the resources (e.g., personnel time and other costs) associated with the intervention, and estimate the resources needed for implementation and maintenance of the ADAPT program in other VA settings.

The study will be conducted at the VA Eastern Colorado and Puget Sound Health Care systems. We will enroll 300 Veterans with CHF, ILD or COPD who have poor quality of life and are at risk for hospitalization or death. Randomization will occur at the patient level with 1:1 randomization of patients to intervention or control groups.

The ADAPT intervention consists of the following components: (1) algorithm-guided management of breathlessness, fatigue, pain, and sleep disturbance provided by a nurse; the algorithms supplement disease-focused treatments with palliative and behavioral treatments; (2) a structured psychosocial care program targeting adjustment to illness and depression, provided by a social worker; and (3) engagement of patients and providers in advance care planning. The nurse and social worker are teamed with a palliative care specialist and primary care provider in brief weekly meetings. The team is integrated into primary care through ADAPT nurse interaction with primary care providers and through electronic medical record (CPRS) communication.

The primary outcome is the difference in patient-reported Function Assessment of Chronic Illness Therapy-General (FACT-G) score at 6 months. For Aim 2, we will conduct a mixed method evaluation to assess intervention implementation. Data will be collected from the intervention database, patient interviews, email surveys of primary care providers, and interviews and notes from the intervention team.

Accrual for this clinical trial is ongoing. There are no findings yet.

This project is significant for Veterans because it addresses CHF, ILD and COPD, serious illnesses which together affect 15-25% of Veterans and are the top two reasons for VA medical hospitalizations. The proposed study will impact clinical care for Veterans with CHF or COPD by testing an innovative, theory-driven palliative symptom management, psychosocial care, and advance care planning intervention to improve quality of life and provision of care according to Veterans goals and preferences. By improving symptoms and depression, and providing care aligned with Veterans goals and preferences, the intervention could achieve the "triple aim" by improving quality of life while reducing health care utilization (emergency department visits, hospitalizations) and the costs they incur.


Journal Articles

  1. Portz JD, Ford KL, Doyon K, Bekelman DB, Boxer RS, Kutner JS, Czaja S, Bull S. Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care. Journal of pain and symptom management. 2020 Jun 29.
  2. Portz JD, Lum HD, Bull S, Boxer RS, Bekelman DB, Ford KL, Gleason K, Casillas A, Bayliss EA. Perceptions of Patient Portal Use for Advance Directive Documentation among Older Adults with Multiple Chronic Conditions. Journal of Social Work in End-of-Life & Palliative Care. 2020 Jun 1; 1-12.
  3. Hadler RA, Curtis BR, Ikejiani DZ, Bekelman DB, Harinstein M, Bakitas MA, Hess R, Arnold RM, Kavalieratos D. "I'd Have to Basically Be on My Deathbed": Heart Failure Patients' Perceptions of and Preferences for Palliative Care. Journal of palliative medicine. 2020 Jul 1; 23(7):915-921.
  4. Bekelman DB, Fink RM, Sannes T, Kline DM, Borrayo EA, Turvey C, Fischer SM. Puente para cuidar (bridge to caring): A palliative care patient navigator and counseling intervention to improve distress in Latino/as with advanced cancer. Psycho-oncology. 2020 Apr 1; 29(4):688-695.
  5. Bekelman DB, Knoepke CE, Turvey C. Identifying critical psychotherapy targets in serious cardiac conditions: The importance of addressing coping with symptoms, healthcare navigation, and social support. Palliative & supportive care. 2019 Oct 1; 17(5):531-535.
  6. Dickman Portz J, Ford K, Bekelman DB, Boxer RS, Kutner JS, Czaja S, Elsbernd K, Bull S. "We're Taking Something So Human and Trying to Digitize": Provider Recommendations for mHealth in Palliative Care. Journal of palliative medicine. 2020 Feb 1; 23(2):240-247.
  7. Graney BA, Au DH, Barón AE, Cheng A, Combs SA, Glorioso TJ, Paden G, Parsons EC, Rabin BA, Ritzwoller DP, Stonecipher JJ, Turvey C, Welsh CH, Bekelman DB. Advancing Symptom Alleviation with Palliative Treatment (ADAPT) trial to improve quality of life: a study protocol for a randomized clinical trial. Trials. 2019 Jun 13; 20(1):355.
  8. Portz JD, Fruhauf C, Bull S, Boxer RS, Bekelman DB, Casillas A, Gleason K, Bayliss EA. "Call a Teenager… That's What I Do!" - Grandchildren Help Older Adults Use New Technologies: Qualitative Study. JMIR aging. 2019 Jun 6; 2(1):e13713.
  9. Bekelman DB. Improving Primary and Specialist Palliative Care in Cardiovascular Disease. JAMA Network Open. 2019 May 3; 2(5):e192356.
  10. Portz JD, Bayliss EA, Bull S, Boxer RS, Bekelman DB, Gleason K, Czaja S. Using the Technology Acceptance Model to Explore User Experience, Intent to Use, and Use Behavior of a Patient Portal Among Older Adults With Multiple Chronic Conditions: Descriptive Qualitative Study. Journal of medical Internet research. 2019 Apr 8; 21(4):e11604.
  11. Buck HG, Bekelman D, Cameron J, Chung M, Hooker S, Pucciarelli G, Stromberg A, Riegel B, Vellone E. A body of work, a missed opportunity: Dyadic research in older adults. Journal of the American Geriatrics Society. 2019 Apr 1; 67(4):854-855.
  12. Portz JD, Cognetta S, Bekelman DB. Potential Technology Development for Palliative Care. Journal of palliative medicine. 2018 Jul 1; 21(7):899-900.
  13. Bekelman DB, Allen LA, McBryde CF, Hattler B, Fairclough DL, Havranek EP, Turvey C, Meek PM. Effect of a Collaborative Care Intervention vs Usual Care on Health Status of Patients With Chronic Heart Failure: The CASA Randomized Clinical Trial. JAMA internal medicine. 2018 Apr 1; 178(4):511-519.
  14. Bekelman DB, Johnson-Koenke R, Bowles DW, Fischer SM. Improving Early Palliative Care with a Scalable, Stepped Peer Navigator and Social Work Intervention: A Single-Arm Clinical Trial. Journal of palliative medicine. 2018 Jul 1; 21(7):1011-1016.
  15. Kavalieratos D, Gelfman LP, Tycon LE, Riegel B, Bekelman DB, Ikejiani DZ, Goldstein N, Kimmel SE, Bakitas MA, Arnold RM. Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities. Journal of the American College of Cardiology. 2017 Oct 10; 70(15):1919-1930.
  16. Bekelman DB, Johnson-Koenke R, Ahluwalia SC, Walling AM, Peterson J, Sudore RL. Development and Feasibility of a Structured Goals of Care Communication Guide. Journal of palliative medicine. 2017 Sep 1; 20(9):1004-1012.

DRA: Aging, Older Veterans' Health and Care, Cardiovascular Disease, Lung Disorders
DRE: Treatment - Implementation
Keywords: End-of-Life, Implementation, Symptom Management
MeSH Terms: none

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