Abstract
Context
Early, concurrent palliative care interventions in chronic obstructive pulmonary disease
(COPD) are limited. Project EPIC (Early Palliative Care In COPD) is a multiphase mixed methods study working to fill
this gap.
Objectives
To conduct a formative and summative evaluation of EPIC, a telephonic nurse coach-led
early palliative care intervention for COPD adapted from the ENABLE© intervention
in cancer.
Methods
Phase I Formative Evaluation: Patients with moderate-to-very-severe COPD, family caregivers, and pulmonary and
palliative care clinicians rated the acceptability and feasibility of EPIC (≥4 out
of five on a Likert-scale survey). Phase II Summative Evaluation: Patients and family caregivers in Phase I participated in a pilot of the three month
EPIC prototype to evaluate intervention and data collection feasibility (≥70% completion)
and to seek qualitative feedback.
Results
Phase I Formative Evaluation: Patients (n=10), family caregivers (n=10), pulmonary clinicians (n=6), and palliative care clinicians (n=6) found EPIC acceptable and feasible to support adaptation, while priority early
palliative care needs in COPD from our prior research mapped well to the EPIC prototype.
Phase II Summative Evaluation: Patients (n=5; ages 49–72, 40% moderate COPD, 40% Black) and their family caregivers (n=5; ages 51–73, 40% Black) completed 100% of EPIC prototype components, including weekly
telephone sessions, a one month follow-up call, Advance Directive, palliative care
clinic attendance, and 95% of monthly phone data collection sessions. Feedback from
participants about EPIC was all positive.
Conclusion
EPIC was acceptable and feasible in patients with COPD and their family caregivers.
Larger feasibility and effectiveness trials are warranted.
Key Words
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pain and Symptom ManagementAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
Morrison RS, Meier DM, Rogers M, et al. America's care of serious illness: 2019 state-by-state report card on access to palliative care in our nation's hospitals. Center to Advance Palliative Care. 2019. Accessed online from https://reportcard.capc.org.
- Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease.Lancet. 2017; 390: 988-1002https://doi.org/10.1016/S0140-6736(17)32127-X
- The role of palliative care in COPD.Chest. 2022; 161: 1250-1262https://doi.org/10.1016/j.chest.2021.10.032
- Utilization of palliative care in patients with end-stage chronic obstructive pulmonary disease on home oxygen: national trends and barriers to care in the United States.Chest. 2016; https://doi.org/10.1016/j.chest.2016.06.023
- Quality of end-of-life care provided to patients with different serious illnesses.JAMA Intern Med. 2016; https://doi.org/10.1001/jamainternmed.2016.1200
- Palliative care early in the care continuum among patients with serious respiratory illness: an official ATS/AAHPM/HPNA/SWHPN policy statement.Am J Respir Crit Care Med. 2022; 206: e44-e69https://doi.org/10.1164/rccm.202207-1262ST
- Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the project ENABLE II randomized controlled trial.JAMA. 2009; 302: 741-749https://doi.org/10.1001/jama.2009.1198
- The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions.Palliat Support Care. 2009; 7: 75-86https://doi.org/10.1017/S1478951509000108
- The chronic care model: congruency and predictors among primary care patients with osteoarthritis.Qual Saf Health Care. 2008; 17: 442-446https://doi.org/10.1136/qshc.2007.022822
- Family caregiver depressive symptom and grief outcomes from the ENABLE III randomized controlled trial.J Pain Symptom Manage. 2016; https://doi.org/10.1016/j.jpainsymman.2016.03.014
- Translating and testing the ENABLE: CHF-PC concurrent palliative care model for older adults with heart failure and their family caregivers.J Palliat Med. 2014; 17: 995-1004https://doi.org/10.1089/jpm.2013.0680
- A formative evaluation of patient and family caregiver perspectives on early palliative care in COPD across disease severity.Annals of the American Thoracic Society, 2019https://doi.org/10.1513/AnnalsATS.201902-112OC
- Effect of an early palliative care telehealth intervention vs usual care on patients with heart failure: the ENABLE CHF-PC randomized clinical trial.JAMA Intern Med. 2020; 180: 1203-1213https://doi.org/10.1001/jamainternmed.2020.2861
- Effects of a telehealth early palliative care intervention for family caregivers of persons with advanced heart failure: the ENABLE CHF-PC randomized clinical trial.JAMA Netw Open. 2020; 3e202583https://doi.org/10.1001/jamanetworkopen.2020.2583
- Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial.J Clin Oncol. 2015; 33: 1446-1452https://doi.org/10.1200/JCO.2014.58.7824
- Applying human-centered design to refinement of the jumpstart guide, a clinician- and patient-facing goals-of-care discussion priming tool.J Pain Symptom Manage. 2021; 62: 1283-1288https://doi.org/10.1016/j.jpainsymman.2021.06.012
- Development of a framework and tool to facilitate cost-of-care conversations with patients during prenatal care.Ann Intern Med. 2019; 170: S62-S69https://doi.org/10.7326/M18-2207
- A qualitative study of pulmonary and palliative care clinician perspectives on early palliative care in chronic obstructive pulmonary disease.J Palliat Med. 2020; 23: 513-526https://doi.org/10.1089/jpm.2019.0355
- The COPE intervention for caregivers of patients with heart failure: an adapted intervention.J Hosp Palliat Nurs. 2013; 15https://doi.org/10.1097/NJH.0b013e31827777fb
- Addressing patient emotional and existential needs during serious illness: results of the outlook randomized controlled trial.J Pain Symptom Manage. 2017; 54: 898-908https://doi.org/10.1016/j.jpainsymman.2017.06.003
- Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study.J Pain Symptom Manage. 2014; 48 (569–81 e1)https://doi.org/10.1016/j.jpainsymman.2013.11.011
- Validation of the distress thermometer in patients with advanced cancer receiving specialist palliative care in a hospice setting.Palliat Med. 2020; 269216320954339https://doi.org/10.1177/0269216320954339
- National consensus project clinical practice guidelines for quality palliative care guidelines.J Palliat Med. 2018; https://doi.org/10.1089/jpm.2018.0431
- Educate, nurture, advise, before life ends comprehensive heartcare for patients and caregivers (ENABLE CHF-PC): study protocol for a randomized controlled trial.Trials. 2018; 19: 422https://doi.org/10.1186/s13063-018-2770-9
- INSPIRED' approaches to better care for patients with advanced COPD.Clin Invest Med. 2013; 36: E114-E120
- INSPIRED' COPD outreach program: doing the right things right.Clin Invest Med. 2014; 37: E311-E319
- Proactive palliative care for patients with COPD (PROLONG): a pragmatic cluster controlled trial.Int J Chron Obstruct Pulmon Dis. 2017; 12: 2795-2806https://doi.org/10.2147/COPD.S141974
- Early-Integrated Palliative home care and standard care for end-stage COPD (EPIC): a phase II pilot RCT testing feasibility, acceptability and effectiveness.J Pain Symptom Manage. 2019; https://doi.org/10.1016/j.jpainsymman.2019.09.012
- Patient coping strategies in COPD across disease severity and quality of life: a qualitative study.NPJ Primary Care Respir Med. 2016; 26: 16051https://doi.org/10.1038/npjpcrm.2016.51
- Nurse-led palliative care clinical trial improves knowledge and preparedness in caregivers of patients with idiopathic pulmonary fibrosis.Ann Am Thorac Soc. 2021; 18: 1811-1821https://doi.org/10.1513/AnnalsATS.202012-1494OC
- Using patients and their caregivers feedback to develop ENABLE CHF-PC: an early palliative care intervention for advanced heart failure.J Palliat Care. 2019; 34: 103-110https://doi.org/10.1177/0825859718785231
- Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial.BMC Palliat Care. 2017; 16: 45https://doi.org/10.1186/s12904-017-0226-8
- Implementation of a palliative hospital-centered spiritual and psychological telehealth system during COVID-19 pandemic.J Pain Symptom Manage. 2021; 62: 1015-1019https://doi.org/10.1016/j.jpainsymman.2021.04.016
- An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: the CASCADE pilot factorial trial.J Pain Symptom Manage. 2022; 63: 11-22https://doi.org/10.1016/j.jpainsymman.2021.07.023
- Patients' experiences of telehealth in palliative home care: scoping review.J Med Internet Res. 2020; 22: e16218https://doi.org/10.2196/16218
- Caregiver-assisted coping skills training for patients with COPD: background, design, and methodological issues for the INSPIRE-II study.Clin Trials. 2009; 6: 172-184https://doi.org/10.1177/1740774509102565
- Effects of a caregiver educational program on interactions between family caregivers and patients with advanced COPD.Home Healthc Now. 2022; 40: 75-81https://doi.org/10.1097/NHH.0000000000001049
- Relative responsiveness of the Chronic Respiratory Questionnaire, St. Georges Respiratory Questionnaire and four other health-related quality of life instruments for patients with chronic lung disease.Respiratory medicine. 2007; 101: 308-316https://doi.org/10.1016/j.rmed.2006.04.023
- Patient assessment of chronic illness care (PACIC) and improved patient-centered outcomes for chronic conditions.J Gen Intern Med. 2008; 23: 77-80https://doi.org/10.1007/s11606-007-0452-5
- Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items.Qual Life Res. 2009; 18: 873-880https://doi.org/10.1007/s11136-009-9496-9
- Item banks for measuring emotional distress from the patient-reported outcomes measurement information system (PROMIS(R)): depression, anxiety, and anger.Assessment. 2011; 18: 263-283https://doi.org/10.1177/1073191111411667
- Life-Space mobility and clinical outcomes in COPD.Int J Chron Obstruct Pulmon Dis. 2018; 13: 2731-2738https://doi.org/10.2147/COPD.S170887
- Characteristics of dyadic care types among patients living with multiple chronic conditions and their informal caregivers.J Adv Nurs. 2021; 77: 4768-4781https://doi.org/10.1111/jan.15033
- The seven-item short form of the dyadic adjustment scale: further evidence for construct validity.Am J Fam Ther. 2001; 29: 324-335https://doi.org/10.1080/01926180126501
- Measurement and the analysis of burden.Res Aging. 1985; 7: 137-152https://doi.org/10.1177/0164027585007001007
- The impact of elder health, caregiver involvement, and global stress on two dimensions of caregiver burden.J Gerontol. 1991; 46: S9-19
- Measuring positive caregiving experiences in family caregivers of nursing home residents: a comparison of the positive experiences scale, gain in alzheimer care instrument, and positive aspects of caregiving questionnaire.Geriatr Gerontol Int. 2021; 21: 636-643https://doi.org/10.1111/ggi.14210
Article info
Publication history
Published online: December 06, 2022
Accepted:
November 29,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.