Palliative care in patients with cystic fibrosis: A systematic review
Keywords:
Palliative care, cystic fibrosis, quality of life, psychosocial supportAbstract
Palliative care consists of supportive treatments focused on terminally ill patients and their families. Therefore, the objective of this systematic review was to analyze the role of palliative care in patients with cystic fibrosis through a systematic review to identify approaches, intervention strategies, and benefits. The methodology was based on a systematic review using the PRISMA method, consulting the SciELO, Redalyc, PubMed, Scopus, and Dialnet databases, which allowed for the selection of 12 studies in English and Spanish between 2020 and 2025. The results revealed that the approaches applied in palliative care comprehensively addressed the physical, social, emotional, and spiritual dimensions, together with advance planning and interviews to recognize patients' symptoms; the strategies used in the application of palliative care during routine care included the use of validated tools such as IPOS, emotional and psychosocial support through groups, pharmacological management, counseling, and therapies; the reported benefits included early detection of needs, reduction of pain, fatigue, and stress, emotional well-being, as well as empowerment in decision-making for both patients and family members, improving quality of life.
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Basile, M., Dhingra, L., & Georgiopoulos, A. (2023). Development of a cystic fibrosis primary palliative care intervention: Qualitative analysis of patient and family caregiver preferences. Journal of Patient Experience, 2(8), 1–10. https://doi.org/10.1177/23743735231161486
Cruz, J., Goyes, R., & Galarza, C. (2024). La fibrosis quística, una enfermedad pulmonar: Patogenia y objetivos terapéuticos actualizados. Revista UNIANDES de Ciencias de la Salud, 7(1), 71–86. https://doi.org/10.61154/rucs.v7i1.3381
Dellon, E., Basile, M., Hobler, M., Georgiopoulos, A., Chen, E., Goggin, J., & Kavalieratos, D. (2021). Palliative care needs of individuals with cystic fibrosis: Perspectives of multiple stakeholders. Journal of Palliative Medicine, 23(7), 957–963. https://doi.org/10.1089/jpm.2019.0464
Diab, L., & Zamarrón, E. (2023). Fibrosis quística: Epidemiología, clínica, diagnóstico y tratamiento. Medicina Clínica, 161(9), 389–396. https://doi.org/10.1016/j.medcli.2023.06.006
DiFiglia, S., Dhingra, L., Georgiopoulos, A., Papia, K., & Sullivan, E. (2024). Palliative care needs among outpatient adults with cystic fibrosis: Baseline data from the Improving Life with CF trial. Journal of Cystic Fibrosis, 24(4), 804–810. https://doi.org/10.1016/j.jcf.2023.10.018
Georgiopoulos, A., DiFiglia, S., Seng, E., Portenoy, R., Chaudhary, N., Wei, R., & L., D. (2024). Validation of the integrated palliative care outcome scale (IPOS) in adults with cystic fibrosis. Pediatric Pulmonology, 59(11), 2857–2866. https://doi.org/10.1002/ppul.27143
Guo, J., Garratt, A., & Hill, A. (2022). Tasas mundiales de diagnóstico y tratamiento eficaz de la fibrosis quística. Journal of Cystic Fibrosis, 21(3), 456–462. https://doi.org/10.1016/j.jcf.2022.01.009
Kavalieratos, D., Georgiopoulos, A., Dhingra, L., Basile, M., Rabinowitz, E., Hempstead, S., & Dellon, E. (2021). Models of palliative care delivery for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed consensus guidelines. Journal of Palliative Medicine, 24(1), 18–30. https://doi.org/10.1089/jpm.2020.0311
Keyeux, G., Sánchez, D., Garavito, P., Stand, I., Rodas, C., Bienvenu, T., & Barón, O. (2025). Estudios moleculares en pacientes colombianos con fibrosis quística. Acta Médica Colombiana, 22(4), 167–173. https://www.actamedicacolombiana.com/ojs/index.php/actamed/article/view/4163
Kurita, P., Eidemak, I., Pressier, T., Larsen, S., Sjøgren, P., & Lykke, C. (2024). Palliative care needs in cystic fibrosis: Hospital survey. BMJ Supportive & Palliative Care. https://doi.org/10.1136/spcare-2024-005318
Lowers, J., Dellon, E., Stephenson, A., Arnold, R., Althouse, A., Jeong, K., & Hovater, C. (2022). Models of palliative care delivery for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed consensus guidelines. BMJ Open Respiratory Research, 9(1), e001381. https://doi.org/10.1136/bmjresp-2022-001381
Marmor, M., Jonas, A., Mirza, A., Rad, E., Wong, H., & Aslakson, R. (2020). Opportunities to Improve Utilization of Palliative Care Among Adults With Cystic Fibrosis: A Systematic Review. Journal of Pain and Symptom Management, 58(6), 1100–1112. https://doi.org/10.1016/j.jpainsymman.2019.08.017
Oare, K., Jo Klein, S., Veatch, M., Gibson, K., Kass, D., & Nouraie, M. (2021). Nurse-Led Palliative Care Clinical Trial Improves Knowledge and Preparedness in Caregivers of Patients with Idiopathic Pulmonary Fibrosis. Annals of the American Thoracic Society, 18(11), 1–18. https://doi.org/10.1513/AnnalsATS.202012-1494OC
Organización Mundial de la Salud. (2021). Cuidados paliativos [Reporte]. https://www.paho.org/es/temas/cuidados-paliativos
Ramos, J., Barreto, R., Almeida, R., Caldas, Y., & Dos Santos, M. (2024). Cuidados paliativos en pacientes con fibrosis quística: Una revisión integradora. Revista Destaques Acadêmicos, 16(3), 308–321. https://www.univates.br/revistas/index.php/destaques/article/view/3859
Trandel, E., Pilewski, J., Dellon, E. P., Moreines, L., Arnold, R., Hoydich, Z., & Kavalieratos, D. (2020). Prevalence of unmet palliative care needs in adults with cystic fibrosis. Journal of Cystic Fibrosis, 19(3), 394–401. https://doi.org/10.1016/j.jcf.2019.11.010
Zuloaga, N., Vivallos, N., Faúndez, R., González, M., Navarro, E., & Chávez, E. (2021). Manifestaciones gastrointestinales en fibrosis quística en una población pediátrica. Andes Pediátrica, 92(4), 526–533. https://doi.org/10.32641/andespediatr.v92i4.2693
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Copyright (c) 2025 Alexandra Maribel Salcán-Lemache, Carmen Victoria Molina-Calle, Diego Raúl Bonifaz-Díaz

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