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- Evaluation of pain, dyspnea, and goals of care among adults with cystic fibrosis: a comprehensive palliative care survey.Am J Hosp Palliat Care. 2017; 34: 347-352https://doi.org/10.1177/1049909116629135
- The CF-CARES primary palliative care model: a CF-specific structured assessment of symptoms, distress, and coping.J Cyst Fibros. 2018; 17: 71-77https://doi.org/10.1016/j.jcf.2017.02.011
- Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of the international depression epidemiological study across nine countries.Thorax. 2014; 69: 1090-1097https://doi.org/10.1136/thoraxjnl-2014-205983
- The psychological burden of cystic fibrosis.Curr Opin Pulm Med. 2016; 22: 187-191https://doi.org/10.1097/MCP.0000000000000244
- Self-reported physical and psychological symptom burden in adults with cystic fibrosis.J Pain Symptom Manag. 2008; 35: 372-380https://doi.org/10.1016/j.jpainsymman.2007.06.005
- Symptom burden and unmet existential needs in adults with cystic fibrosis.West J Nurs Res. 2019; 41: 1448-1464https://doi.org/10.1177/0193945919852585
Trandel ET, Kavalieratos D, Basile M, Hobler MR, Georgiopoulos AM, Chen E, Goggin JL, Goss CH, Hempstead SE,Faro A, Dellon EP. Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members. Pediatricpulmonology. 2020 Aug;55(8):2017–24.
- Prevalence of unmet palliative care needs in adults with cystic fibrosis.J Cyst Fibros. 2020; 19: 394-401https://doi.org/10.1016/j.jcf.2019.11.010
- Assessment of acute and chronic pain symptoms in children with cystic fibrosis.Pediatr Pulmonol. 2005; 40: 330-335https://doi.org/10.1002/ppul.20292
- Descriptions of the pain experience in adults and adolescents with cystic fibrosis.Pain Manag Nurs. 2018; 19 (Epub 2018 Mar 1. PMID:29501357PMCID: PMC6385861): 340-347https://doi.org/10.1016/j.pmn.2017.11.011
- Pain impacts on quality of life and interferes with treatment in adults with cystic fibrosis.Physiother Res Int. 2012; 17 (Epub 2011 Oct 25. PMID:22025449): 132-141https://doi.org/10.1002/pri.524
- Pain is a common problem affecting clinical outcomes in adults with cystic fibrosis.Chest. 2011; 140: 1598-1603https://doi.org/10.1378/chest.11-0132
- Satisfaction and effectiveness of opioid pain management among adults with cystic fibrosis: a mixed methods study.J Cyst Fibros. 2022; 21 (Epub 2021 Jul 10. PMID:34257058PMCID: PMC8743300): e15-e22https://doi.org/10.1016/j.jcf.2021.06.007
- Family caregiver perspectives on symptoms and treatments for patients dying from complications of cystic fibrosis.J Pain Symptom Manag. 2010; 40: 829-837https://doi.org/10.1016/j.jpainsymman.2010.03.024
- Brief assessment of adult cancer patients’ perceived needs: development and validation of the 34-item supportive care needs survey (SCNS-SF34).J Eval Clin Pract. 2009; 15: 602-606
- Associations between demographic characteristics and unmet supportive care needs in adults with cystic fibrosis.BMJ Support Pall Car. 2022; 12: e281-e284
- Palliative care skills in CF: perspectives of adults with CF, caregivers, and CF care team members.Pediatr Pulmonol. 2020; 55: 2017-2024https://doi.org/10.1002/ppul.24806
- Palliative care needs of individuals with cystic fibrosis: perspectives of multiple stakeholders.J Palliat Med. 2020; 23: 957-963https://doi.org/10.1089/jpm.20219.0464
- Thematic analysis: striving to meet the trustworthiness criteria.Int J Qual Methods. 2017; https://doi.org/10.1177/1609406917733847
- Realizing the dream of molecularly targeted therapies for cystic fibrosis.N Engl J Med. 2019; 381: 1863-1865