Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences

Melissa J Basile¹, Lara Dhingra^{2

3}, Stephanie DiFiglia², Jennifer Polo¹, Russell Portenoy^{2

4}, Janice Wang⁵, Patricia Walker⁶, Brandi Middour-Oxler^{7

8}, Rachel W Linnemann^{7

8}, Catherine Kier⁹, Deborah Friedman^{10

11}, Maria Berdella⁶, Robert Abdullah⁹, Lael M Yonker^{10

12}, Martha Markovitz¹³, Denis Hadjiliadis¹⁴, Melissa Shiffman¹⁵, Francine Fischer¹⁵, Sophie Pollinger¹⁶, Margot Hardcastle¹⁶, Nivedita Chaudhary¹⁶, Anna M Georgiopoulos^{10

11}

Affiliations

¹ Feinstein Institutes for Medical Research, Northwell Health, New York, NY, USA.
² MJHS Institute for Innovation in Palliative Care, New York, NY, USA.
³ Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY, USA.
⁴ Department of Family and Social Medicine, Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA.
⁵ Division of Pulmonary, Critical Care and Sleep Medicine, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, NY, USA.
⁶ Department of Pulmonary Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
⁷ Division of Pulmonary, Asthma, Cystic Fibrosis and Sleep, Department of Pediatrics, Emory University, Atlanta, GA, USA.
⁸ Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, GA, USA.
⁹ Department of Pediatrics, Stony Brook University Medical Center, Stony Brook, NY, USA.
¹⁰ Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA.
¹¹ Department of Psychiatry, Harvard Medical School, Boston, MA, USA.
¹² Pulmonary Division, Massachusetts General Hospital for Children, Boston, MA, USA.
¹³ Keck Medicine of University of Southern California, Los Angeles, California, USA (retired).
¹⁴ Division of Pulmonary and Critical Care Medicine, Department of Medicine, Hospital of the University of Pennsylvania, Philadelphia, PA, USA.
¹⁵ Community Stakeholder, New York, NY, USA.
¹⁶ Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.

PMID: 36936380
PMCID: PMC10021085
DOI: 10.1177/23743735231161486

Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences

Melissa J Basile et al. J Patient Exp. 2023.

. 2023 Mar 15:10:23743735231161486.

doi: 10.1177/23743735231161486. eCollection 2023.

Authors

Affiliations

¹ Feinstein Institutes for Medical Research, Northwell Health, New York, NY, USA.
² MJHS Institute for Innovation in Palliative Care, New York, NY, USA.
³ Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY, USA.
⁴ Department of Family and Social Medicine, Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA.
⁵ Division of Pulmonary, Critical Care and Sleep Medicine, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, NY, USA.
⁶ Department of Pulmonary Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
⁷ Division of Pulmonary, Asthma, Cystic Fibrosis and Sleep, Department of Pediatrics, Emory University, Atlanta, GA, USA.
⁸ Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, GA, USA.
⁹ Department of Pediatrics, Stony Brook University Medical Center, Stony Brook, NY, USA.
¹⁰ Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA.
¹¹ Department of Psychiatry, Harvard Medical School, Boston, MA, USA.
¹² Pulmonary Division, Massachusetts General Hospital for Children, Boston, MA, USA.
¹³ Keck Medicine of University of Southern California, Los Angeles, California, USA (retired).
¹⁴ Division of Pulmonary and Critical Care Medicine, Department of Medicine, Hospital of the University of Pennsylvania, Philadelphia, PA, USA.
¹⁵ Community Stakeholder, New York, NY, USA.
¹⁶ Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.

PMID: 36936380
PMCID: PMC10021085
DOI: 10.1177/23743735231161486

Abstract

To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model ("Improving Life with CF") developed to standardize this care. We purposively sampled and interviewed 14 pwCF and caregivers from 5 Improving Life with CF study sites. Thematic analysis was guided by a priori codes using the National Consensus Project's Guidelines for Quality Palliative Care. Participants included 7 adults and 2 adolescents with CF (3 with advanced disease), 4 parents, 1 partner (7 women; 5 people of color). Few were familiar with palliative care. Illness burden was described in multiple domains, including physical (e.g., dyspnea, pain), psychological (e.g., anxiety), and social (e.g., family well-being; impact on work/school). Most preferred survey-based screening with care coordination by the CF team. Preferences for screening approaches varied. PwCF and caregivers experience illness burden and are receptive to a CF-team delivered primary palliative care screening-and-triage model with flexible processes.

Keywords: caregiver burden; cystic fibrosis; patient-centered research; primary palliative care; program development; qualitative research; quality of health care.

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Conflict of interest statement

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: MJB receives research support from the Cystic Fibrosis Foundation in addition to the submitted work, and a grant from a federal source (AHRQ 1R03HS026970-01A1), outside the submitted work. LD receives research support from the Cystic Fibrosis Foundation [GEORGI19QI0]. RP receives research support from NIH grants. JW reports grants from the Cystic Fibrosis Foundation (CFF); consultation fees from the Data Safety Monitoring Board of CFF, irrelevant to the submitted work. PW reports grants support from Cystic Fibrosis Foundation (CFF); consultation fees from Cystic Fibrosis Foundation (CFF); grant support from Vertex Pharmaceuticals, irrelevant to the submitted work. BMO reports grants from Cystic Fibrosis Foundation; consulting and travel reimbursement from CFF. RWL reports grants from the Cystic Fibrosis Foundation and Vertex Pharmaceuticals; consulting fees and serving on advisory boards for Vertex Pharmaceuticals, outside of the submitted work. DF reports grants from the Cystic Fibrosis Foundation (CFF), Dutch Cystic Fibrosis Foundation, and Vertex Pharmaceuticals, and travel reimbursement from the CFF. MB receives research support from the Cystic Fibrosis Foundation [GEORGI19QI0]. DH reports grants from the Cystic Fibrosis Foundation (CFF), NIH; consulting fees from ADAM Medical review; personnel fees from global CF conference, Metropolitan Jewish Health System and Astra Zeneca advisory board. AMG reports personal fees and travel reimbursement from Cystic Fibrosis Australia; grants, personal fees, and travel reimbursement from Cystic Fibrosis Foundation; grants from the Dutch Cystic Fibrosis Foundation; travel reimbursement from the European Cystic Fibrosis Society; personal fees from Johns Hopkins University/DKBmed; personal fees from Saudi Pediatric Pulmonology Association; grants and personal fees from Vertex Pharmaceuticals. The authors (SD, JP, CK, RA, LY, MM, MS, FF, SP, MH, NC) do not have any personal, professional, or financial conflicts of interest to disclose for this work. The authors did not work with or were otherwise influenced by any external sponsors for this work.

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Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences

Affiliations

Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences

Authors

Affiliations

Abstract

Conflict of interest statement

References

LinkOut - more resources

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