Literature DB >> 31003953

Addressing lung transplant with adults with cystic fibrosis: A qualitative analysis of patients' perspectives and experiences.

Kathleen J Ramos1, Mara R Hobler2, Ruth A Engelberg2, J Randall Curtis2, Miriam I Zander3, Shacole S Howard4, Christopher H Goss5, Moira L Aitken4.   

Abstract

Referral for lung transplantation is a complex process that typically begins with a discussion in cystic fibrosis (CF) clinic. We performed a secondary analysis of interviews conducted at the University of Washington CF Clinic as part of a study of unmet palliative care needs, June 2015 - January 2016, among adults with moderate-to-severe CF-related lung disease. Content analysis methods were used to identify themes related to discussion of lung transplant in CF clinic. Thirty-two of 48 interviews (67%) addressed transplant. An individual's willingness to discuss transplant was not necessarily related to the degree of lung function impairment. Patients reported reliance on CF physicians as a source of accurate information about transplant. Individuals with CF sometimes reported feeling too old or not worthy of transplant. Many had apprehensive or ambivalent feelings towards transplant. Patient-identified barriers and facilitators to lung transplant discussions can inform physicians as they discuss transplant in CF clinic.
Copyright © 2019. Published by Elsevier B.V.

Entities:  

Year:  2019        PMID: 31003953      PMCID: PMC6545257          DOI: 10.1016/j.jcf.2019.04.007

Source DB:  PubMed          Journal:  J Cyst Fibros        ISSN: 1569-1993            Impact factor:   5.482


  10 in total

Review 1.  Content analysis: review of methods and their applications in nutrition education.

Authors:  Nancy L Kondracki; Nancy S Wellman; Daniel R Amundson
Journal:  J Nutr Educ Behav       Date:  2002 Jul-Aug       Impact factor: 3.045

2.  Three approaches to qualitative content analysis.

Authors:  Hsiu-Fang Hsieh; Sarah E Shannon
Journal:  Qual Health Res       Date:  2005-11

3.  The International Thoracic Organ Transplant Registry of the International Society for Heart and Lung Transplantation: Thirty-fifth adult lung and heart-lung transplant report-2018; Focus theme: Multiorgan Transplantation.

Authors:  Daniel C Chambers; Wida S Cherikh; Samuel B Goldfarb; Don Hayes; Anna Y Kucheryavaya; Alice E Toll; Kiran K Khush; Bronwyn J Levvey; Bruno Meiser; Joseph W Rossano; Josef Stehlik
Journal:  J Heart Lung Transplant       Date:  2018-08-11       Impact factor: 10.247

Review 4.  Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines.

Authors:  Kathleen J Ramos; Patrick J Smith; Edward F McKone; Joseph M Pilewski; Amy Lucy; Sarah E Hempstead; Erin Tallarico; Albert Faro; Daniel B Rosenbluth; Alice L Gray; Jordan M Dunitz
Journal:  J Cyst Fibros       Date:  2019-03-27       Impact factor: 5.482

Review 5.  A consensus document for the selection of lung transplant candidates: 2014--an update from the Pulmonary Transplantation Council of the International Society for Heart and Lung Transplantation.

Authors:  David Weill; Christian Benden; Paul A Corris; John H Dark; R Duane Davis; Shaf Keshavjee; David J Lederer; Michael J Mulligan; G Alexander Patterson; Lianne G Singer; Greg I Snell; Geert M Verleden; Martin R Zamora; Allan R Glanville
Journal:  J Heart Lung Transplant       Date:  2014-06-26       Impact factor: 10.247

6.  Causes of death in French cystic fibrosis patients: The need for improvement in transplantation referral strategies!

Authors:  Clémence Martin; Cécile Hamard; Reem Kanaan; Véronique Boussaud; Dominique Grenet; Michel Abély; Dominique Hubert; Anne Munck; Lydie Lemonnier; Pierre-Régis Burgel
Journal:  J Cyst Fibros       Date:  2015-09-26       Impact factor: 5.482

7.  Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs.

Authors:  Mara R Hobler; Ruth A Engelberg; J Randall Curtis; Kathleen J Ramos; Miriam I Zander; Shacole S Howard; Christopher H Goss; Moira L Aitken
Journal:  J Palliat Med       Date:  2018-01-03       Impact factor: 2.947

8.  Understanding the treatment preferences of seriously ill patients.

Authors:  Terri R Fried; Elizabeth H Bradley; Virginia R Towle; Heather Allore
Journal:  N Engl J Med       Date:  2002-04-04       Impact factor: 91.245

9.  Barriers and Facilitators to Scaling Up Outpatient Palliative Care.

Authors:  David B Bekelman; Borsika A Rabin; Carolyn T Nowels; Anju Sahay; Paul A Heidenreich; Stacy M Fischer; Deborah S Main
Journal:  J Palliat Med       Date:  2016-03-14       Impact factor: 2.947

10.  Cystic fibrosis physicians' perspectives on the timing of referral for lung transplant evaluation: a survey of physicians in the United States.

Authors:  Kathleen J Ramos; Ranjani Somayaji; Erika D Lease; Christopher H Goss; Moira L Aitken
Journal:  BMC Pulm Med       Date:  2017-01-19       Impact factor: 3.317

  10 in total
  5 in total

1.  Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences.

Authors:  Ann L Jennerich; Mara R Hobler; Rashmi K Sharma; Ruth A Engelberg; J Randall Curtis
Journal:  Chest       Date:  2020-06-02       Impact factor: 9.410

2.  Incorporating patient and caregiver feedback into lung transplant referral guidelines for individuals with cystic fibrosis-Preliminary findings from a novel paradigm.

Authors:  Patrick J Smith; Jordan M Dunitz; Amy Lucy; Sarah E Hempstead; Erin Tallarico; Albert Faro; Joseph M Pilewski; Kathleen J Ramos
Journal:  Clin Transplant       Date:  2020-08-17       Impact factor: 2.863

Review 3.  The future of cystic fibrosis care: a global perspective.

Authors:  Scott C Bell; Marcus A Mall; Hector Gutierrez; Milan Macek; Susan Madge; Jane C Davies; Pierre-Régis Burgel; Elizabeth Tullis; Claudio Castaños; Carlo Castellani; Catherine A Byrnes; Fiona Cathcart; Sanjay H Chotirmall; Rebecca Cosgriff; Irmgard Eichler; Isabelle Fajac; Christopher H Goss; Pavel Drevinek; Philip M Farrell; Anna M Gravelle; Trudy Havermans; Nicole Mayer-Hamblett; Nataliya Kashirskaya; Eitan Kerem; Joseph L Mathew; Edward F McKone; Lutz Naehrlich; Samya Z Nasr; Gabriela R Oates; Ciaran O'Neill; Ulrike Pypops; Karen S Raraigh; Steven M Rowe; Kevin W Southern; Sheila Sivam; Anne L Stephenson; Marco Zampoli; Felix Ratjen
Journal:  Lancet Respir Med       Date:  2019-09-27       Impact factor: 30.700

4.  Lung transplant referral practice patterns: a survey of cystic fibrosis physicians and general pulmonologists.

Authors:  Bethany L Bartley; Carolyn E Schwartz; Roland B Stark; Anna M Georgiopoulos; Deborah Friedman; Christopher J Richards; Henry L Dorkin; T Bernard Kinane; Isabel P Neuringer; Lael M Yonker
Journal:  BMC Pulm Med       Date:  2020-03-04       Impact factor: 3.317

5.  Focusing on the penultimate step: increasing early lung transplant discussion in cystic fibrosis clinic to prepare patients for referral.

Authors:  Bethany L Bartley; Anita St John; Isabel P Neuringer; Brian M Cummings; Lael M Yonker
Journal:  BMJ Open Qual       Date:  2020-10
  5 in total

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