Palliative care needs among outpatient adults with cystic fibrosis: Baseline data from the Improving Life with CF trial.

Autor: DiFiglia S; MJHS Institute for Innovation in Palliative Care, New York, NY, United States. Electronic address: sdifigli@mjhs.org., Georgiopoulos AM; Department of Psychiatry, Massachusetts General Hospital, Boston, MA, United States., Portenoy R; MJHS Institute for Innovation in Palliative Care, New York, NY, United States; Departments of Family and Social Medicine and Neurology, Albert Einstein College of Medicine, Bronx, NY, United States., Seng E; Ferkauf Graduate School of Psychology, New York, NY, United States; Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, United States., Berdella M; Lenox Hill Hospital Northwell Health, New York, NY, United States., Friedman D; Department of Psychiatry, Massachusetts General Hospital, Boston, MA, United States., Kier C; Stony Brook Medicine, Stony Brook, NY, United States., Linnemann RW; Emory University School of Medicine, Atlanta, GA, United States; Children's Healthcare of Atlanta, Atlanta, GA, United States., Middour-Oxler B; Emory University School of Medicine, Atlanta, GA, United States; Children's Healthcare of Atlanta, Atlanta, GA, United States., Walker P; Lenox Hill Hospital Northwell Health, New York, NY, United States., Wang J; Feinstein Institute for Medical Research, New Hyde Park, NY, United States., Yonker LM; Pulmonary Division, Massachusetts General Hospital for Children, Boston, MA, United States., Buehler B; Emory University School of Medicine, Atlanta, GA, United States; Children's Healthcare of Atlanta, Atlanta, GA, United States., Chaudhary N; Department of Pediatrics, Massachusetts General Hospital, Boston, MA, United States., Esposito C; Feinstein Institute for Medical Research, New Hyde Park, NY, United States., Frantzen T; Feinstein Institute for Medical Research, New Hyde Park, NY, United States., Henthorne K; Feinstein Institute for Medical Research, New Hyde Park, NY, United States., Plachta A; Lenox Hill Hospital Northwell Health, New York, NY, United States., Pollinger S; Department of Pediatrics, Massachusetts General Hospital, Boston, MA, United States., Stables-Carney T; Stony Brook Medicine, Stony Brook, NY, United States., Trentacoste J; Feinstein Institute for Medical Research, New Hyde Park, NY, United States., Dhingra L; MJHS Institute for Innovation in Palliative Care, New York, NY, United States; Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY, United States.

Publikováno v: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society [J Cyst Fibros] 2024 Jul; Vol. 23 (4), pp. 804-810. Date of Electronic Publication: 2023 Nov 10.

Clinical update: Development and Validation of a Patient Needs Assessment Tool (PNAT) for Oncology Clinicians. Coyle, N., Layman-Goldstein, M., Passik, S., Fishman, B. and Portenoy, R. (1996)Cancer Nursing19(2), 81–92

Autor: William Breitbart, Donna B. Greenberg, Ann Cull

Publikováno v: Psycho-Oncology. 6:76-76

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::0ce783412c8f2eac154e85b20b4e4e69
https://doi.org/10.1002/(sici)1099-1611(199703)6:1<76::aid-pon3259>3.0.co

Addressing Symptom Burden and Palliative Care Needs in Cystic Fibrosis: A Narrative Review of the Literature.

Autor: DiFiglia S; MJHS Institute for Innovation in Palliative Care, New York, NY 10006, USA., Dhingra L; MJHS Institute for Innovation in Palliative Care, New York, NY 10006, USA.; Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY 10461, USA., Georgiopoulos AM; Department of Psychiatry, Massachusetts General Hospital, Boston, MA 02114, USA.; Harvard Medical School, Boston, MA 02115, USA., Papia K; Cystic Fibrosis Center, Northwell Health, New Hyde Park, NY 11042, USA., Sullivan E; Cystic Fibrosis Center, Northwell Health, New Hyde Park, NY 11042, USA., Plachta A; Cystic Fibrosis Center, Lennox Hill, New York, NY 10021, USA., Boccio C; Cystic Fibrosis Center, Northwell Health, New Hyde Park, NY 11042, USA., Portenoy R; MJHS Institute for Innovation in Palliative Care, New York, NY 10006, USA.; Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY 10461, USA.; Department of Neurology, Albert Einstein College of Medicine, Bronx, NY 10461, USA., Basile M; Feinstein Institutes for Medical Research, Northwell Health, Manhasset, NY 11030, USA.

Publikováno v: Life (Basel, Switzerland) [Life (Basel)] 2023 Jul 25; Vol. 13 (8). Date of Electronic Publication: 2023 Jul 25.

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

Autor: Basile MJ; Feinstein Institutes for Medical Research, Northwell Health, New York, NY, USA., Dhingra L; MJHS Institute for Innovation in Palliative Care, New York, NY, USA.; Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, NY, USA., DiFiglia S; MJHS Institute for Innovation in Palliative Care, New York, NY, USA., Polo J; Feinstein Institutes for Medical Research, Northwell Health, New York, NY, USA., Portenoy R; MJHS Institute for Innovation in Palliative Care, New York, NY, USA.; Department of Family and Social Medicine, Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA., Wang J; Division of Pulmonary, Critical Care and Sleep Medicine, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, NY, USA., Walker P; Department of Pulmonary Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Middour-Oxler B; Division of Pulmonary, Asthma, Cystic Fibrosis and Sleep, Department of Pediatrics, Emory University, Atlanta, GA, USA.; Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, GA, USA., Linnemann RW; Division of Pulmonary, Asthma, Cystic Fibrosis and Sleep, Department of Pediatrics, Emory University, Atlanta, GA, USA.; Department of Pediatrics, Children's Healthcare of Atlanta, Atlanta, GA, USA., Kier C; Department of Pediatrics, Stony Brook University Medical Center, Stony Brook, NY, USA., Friedman D; Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA.; Department of Psychiatry, Harvard Medical School, Boston, MA, USA., Berdella M; Department of Pulmonary Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Abdullah R; Department of Pediatrics, Stony Brook University Medical Center, Stony Brook, NY, USA., Yonker LM; Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA.; Pulmonary Division, Massachusetts General Hospital for Children, Boston, MA, USA., Markovitz M; Keck Medicine of University of Southern California, Los Angeles, California, USA (retired)., Hadjiliadis D; Division of Pulmonary and Critical Care Medicine, Department of Medicine, Hospital of the University of Pennsylvania, Philadelphia, PA, USA., Shiffman M; Community Stakeholder, New York, NY, USA., Fischer F; Community Stakeholder, New York, NY, USA., Pollinger S; Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA., Hardcastle M; Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA., Chaudhary N; Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA., Georgiopoulos AM; Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA.; Department of Psychiatry, Harvard Medical School, Boston, MA, USA.

Publikováno v: Journal of patient experience [J Patient Exp] 2023 Mar 15; Vol. 10, pp. 23743735231161486. Date of Electronic Publication: 2023 Mar 15 (Print Publication: 2023).

411 The Improving Life with Cystic Fibrosis multisite implementation trial for primary palliative care intervention in U.S. cystic fibrosis centers: initial uptake and feasibility data

Autor: DiFiglia, S., Georgiopoulos, A., Portenoy, R., Chaudhary, N., Yonker, L., Wang, J., Walker, P., Middour-Oxler, B., Linnemann, R., Kier, C., Friedman, D., Diener, B., Berdella, M., Weinstein, S., Trentacoste, J., Stables-Carney, T., Roncone, S., Pollinger, S., Plachta, A., Henthorne, K., Frantzen, T., Esposito, C., Buehler, B., Dhingra, L.

Publikováno v: In Journal of Cystic Fibrosis October 2023 22 Supplement 3:S213-S213