{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T01:56:46Z","timestamp":1777859806685,"version":"3.51.4"},"reference-count":36,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2023,1,1]],"date-time":"2023-01-01T00:00:00Z","timestamp":1672531200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000897","name":"Cystic Fibrosis Foundation","doi-asserted-by":"publisher","award":["GEORGI19QI0"],"award-info":[{"award-number":["GEORGI19QI0"]}],"id":[{"id":"10.13039\/100000897","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Patient Experience"],"published-print":{"date-parts":[[2023,1]]},"abstract":"<jats:p>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 (\u201c Improving Life with CF\u201d) 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.<\/jats:p>","DOI":"10.1177\/23743735231161486","type":"journal-article","created":{"date-parts":[[2023,3,16]],"date-time":"2023-03-16T02:55:00Z","timestamp":1678935300000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences"],"prefix":"10.1177","volume":"10","author":[{"given":"Melissa J","family":"Basile","sequence":"first","affiliation":[{"name":"Feinstein Institutes for Medical Research, Northwell Health, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lara","family":"Dhingra","sequence":"additional","affiliation":[{"name":"MJHS Institute for Innovation in Palliative Care, New York, NY, USA"},{"name":"Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6288-701X","authenticated-orcid":false,"given":"Stephanie","family":"DiFiglia","sequence":"additional","affiliation":[{"name":"MJHS Institute for Innovation in Palliative Care, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Polo","sequence":"additional","affiliation":[{"name":"Feinstein Institutes for Medical Research, Northwell Health, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Russell","family":"Portenoy","sequence":"additional","affiliation":[{"name":"MJHS Institute for Innovation in Palliative Care, New York, NY, USA"},{"name":"Department of Family and Social Medicine, Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Janice","family":"Wang","sequence":"additional","affiliation":[{"name":"Division of Pulmonary, Critical Care and Sleep Medicine, Donald and Barbara Zucker School of Medicine at Hofstra\/Northwell, New Hyde Park, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Patricia","family":"Walker","sequence":"additional","affiliation":[{"name":"Department of Pulmonary Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5343-7386","authenticated-orcid":false,"given":"Brandi","family":"Middour-Oxler","sequence":"additional","affiliation":[{"name":"Division of Pulmonary, Asthma, Cystic Fibrosis and Sleep, Department of Pediatrics, Emory University, Atlanta, GA, USA"},{"name":"Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, GA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel W","family":"Linnemann","sequence":"additional","affiliation":[{"name":"Division of Pulmonary, Asthma, Cystic Fibrosis and Sleep, Department of Pediatrics, Emory University, Atlanta, GA, USA"},{"name":"Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, GA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Kier","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Stony Brook University Medical Center, Stony Brook, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Deborah","family":"Friedman","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA"},{"name":"Department of Psychiatry, Harvard Medical School, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Berdella","sequence":"additional","affiliation":[{"name":"Department of Pulmonary Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert","family":"Abdullah","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Stony Brook University Medical Center, Stony Brook, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lael M","family":"Yonker","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA"},{"name":"Pulmonary Division, Massachusetts General Hospital for Children, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martha","family":"Markovitz","sequence":"additional","affiliation":[{"name":"Keck Medicine of University of Southern California, Los Angeles, California, USA (retired)"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Denis","family":"Hadjiliadis","sequence":"additional","affiliation":[{"name":"Division of Pulmonary and Critical Care Medicine, Department of Medicine, Hospital of the University of Pennsylvania, Philadelphia, PA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Melissa","family":"Shiffman","sequence":"additional","affiliation":[{"name":"Community Stakeholder, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francine","family":"Fischer","sequence":"additional","affiliation":[{"name":"Community Stakeholder, New York, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sophie","family":"Pollinger","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Margot","family":"Hardcastle","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nivedita","family":"Chaudhary","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna M","family":"Georgiopoulos","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA"},{"name":"Department of Psychiatry, Harvard Medical School, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2023,3,15]]},"reference":[{"key":"bibr1-23743735231161486","doi-asserted-by":"publisher","DOI":"10.5582\/irdr.2017.01043"},{"key":"bibr2-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1016\/j.chc.2010.01.004"},{"key":"bibr3-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2014.12.015"},{"key":"bibr4-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-030-42382-7_21"},{"key":"bibr5-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2019.11.010"},{"key":"bibr6-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2017.10.011"},{"key":"bibr7-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1111\/famp.12538"},{"key":"bibr8-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1099-0496(199702)23:2<95::AID-PPUL4>3.0.CO;2-N"},{"key":"bibr9-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1378\/chest.12-1404"},{"key":"bibr10-23743735231161486","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2019.0464"},{"key":"bibr11-23743735231161486","unstructured":"Cystic 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