Reference Library

Clinical Care Guidelines. Cff.org. https://www.cff.org/Care/Clinical-Care-Guidelines/ Published 2021. Accessed July 14, 2021.

Kavalieratos D, Georgiopoulos AM, Dhingra L, et al. Models of palliative care delivery for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed consensus guidelines. J Palliat Med. 2021;24(1): 18-30. doi:10.1089/jpm.2020.0311.
Dellon EP, Goggin J, Chen E, et al. Defining palliative care in cystic fibrosis: a Delphi study.
J Cyst Fibros. 2018;17(3): 416-421. doi:10.1016/j.jcf.2017.10.011.
Dhingra L, Portenoy R, Abdullah, R, et al. Creating a CF primary palliative care intervention. Pediatr Pulmonol. 2020;55(suppl): S235. https://onlinelibrary.wiley.com/doi/epdf/10.1002/ppul.25089. Published October 6, 2020. Accessed July 14, 2021.
Dhingra L, Walker P, Berdella M, et al. Addressing the burden of illness in adults with cystic fibrosis with screening and triage: an early intervention model of palliative care. J Cyst Fibros. 2020;19(2): 262-270. doi:10.1016/j.jcf.2019.08.009.
Friedman D, Linnemann RW, Altstein LL, et al. The CF-CARES primary palliative care model: a CF-specific structured assessment of symptoms, distress, and coping. J Cyst Fibros. 2018;17(1): 71-77. doi:10.1016/j.jcf.2017.02.011.
Friedman D, Linnemann RW, Altstein LL, et al. Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis. Pediatr Pulmonol. 2019;54(7): 984-992. doi:10.1002/ppul.24311.
Linnemann RW, O’Malley PJ, Friedman D, et al. Development and evaluation of a palliative care curriculum for cystic fibrosis healthcare providers. J Cyst Fibros. 2016;15(1):90-95. doi: 10.1016/j.jcf.2015.03.005.
Middour-Oxler B, Dhingra L, Georgiopoulos AM, et al. Improving assessment for CF pediatric palliative care: Initial development of the ADAPT-CF Communication Guide with children and caregivers. Poster to be presented at: The North American Cystic Fibrosis Conference; September 30, 2021-October 2, 2021; San Antonio, TX.

Basile M, Jojan L, Hobler MR, et al. Assessing practices, beliefs, and attitudes about palliative care among people with cystic fibrosis, their caregivers, and clinicians: Results of a content analysis [published online ahead of print, 2021 Apr 20]. J Palliat Med. 2021;10.1089/jpm.2020.0725. doi:10.1089/jpm.2020.0725.
Dellon EP, Basile M, Hobler MR, et al. Palliative care needs of individuals with cystic fibrosis: Perspectives of multiple stakeholders. J Palliat Med. 2020;23(7):957-963. doi:10.1089/jpm.2019.0464.
Trandel ET, Kavalieratos D, Basile M, et al. Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members. Pediatr Pulmonol. 2020;55(8):2017-2024. doi:10.1002/ppul.24806.
Basile M, Dhingra L, DiFiglia S, et al. Development of a CF primary palliative care intervention: Perceptions and preferences of individuals with CF and family caregivers. Poster to be presented at: The North American Cystic Fibrosis Conference; September 30, 2021-October 2, 2021; San Antonio, TX.

Jandaghi G, Firoozi M, Zia-Tohidi A. Psychological interventions for depression and anxiety: a systematic review and meta-analysis of Iranian chronic pain trials. Health Promot Perspect. 2020;10(3): 180-191. Published 2020 Jul 12. doi:10.34172/hpp.2020.31.
Lin YC, Ly H, Golianu B. Acupuncture pain management for patients with cystic fibrosis: a pilot study. Am J Chin Med. 2005;33(1):151-156. doi:10.1142/S0192415X05002758.
Majeed MH, Ali AA, Sudak DM. Mindfulness-based interventions for chronic pain: Evidence and applications. Asian J Psychiatr. 2018;32:79-83. doi: 10.1016/j.ajp.2017.11.025.
Stenekes SJ, Hughes A, Grégoire MC, et al. Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis. J Pain Symptom Manage. 2009;38(6):837-848. doi: 10.1016/j.jpainsymman.2009.04.029.

Colombo C, Ellemunter H, Houwen R, et al. Guidelines for the diagnosis and management of distal intestinal obstruction syndrome in cystic fibrosis patients. J Cyst Fibros. 2011;10 Suppl 2:S24-S28. doi: 10.1016/S1569-1993(11)60005-2.
Freedman S, Wilschanski M. Best practices in the management of the gastrointestinal aspects of cystic fibrosis. J Cyst Fibros. 2017;(suppl 16): 2S1-S94. Published November 2017. Accessed July 14, 2021.https://www.sciencedirect.com/journal/journal-of-cystic-fibrosis/vol/16/suppl/S2.

Dore MP, Maragkoudakis E, Fraley K, et al. Diet, lifestyle and gender in gastro-esophageal reflux disease. Dig Dis Sci. 2008;53(8): 2027-2032. doi:10.1007/s10620-007-0108-7.
Freedman S, Wilschanski M. Best practices in the management of the gastrointestinal aspects of cystic fibrosis. J Cyst Fibros. 2017;(suppl 16): 2S1-S94. Published November 2017. Accessed July 14, 2021.https://www.sciencedirect.com/journal/journal-of-cystic-fibrosis/vol/16/suppl/S2

Freedman S, Wilschanski M. Best practices in the management of the gastrointestinal aspects of cystic fibrosis. J Cyst Fibros. 2017;(suppl 16): 2S1-S94. Published November 2017. Accessed July 14, 2021. https://www.sciencedirect.com/journal/journal-of-cystic-fibrosis/vol/16/suppl/S2.
Zorba P, Ozdemir L. The preliminary effects of massage and inhalation aromatherapy on chemotherapy-induced acute nausea and vomiting: a quasi-randomized controlled pilot trial. Cancer Nurs. 2018;41(5): 359-366. doi:10.1097/NCC.0000000000000496

Bartley BL, Schwartz CE, Stark RB, et al. Lung transplant referral practice patterns: a survey of cystic fibrosis physicians and general pulmonologists. BMC Pulm Med. 2020;20(1): 58. Published 2020 Mar 4. doi:10.1186/s12890-020-1067-4.
Floto RA, Olivier KN, Saiman L, et al. US Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus recommendations for the management of non-tuberculous mycobacteria in individuals with cystic fibrosis. Thorax. 2016;71 Suppl 1(Suppl 1):i1-i22. doi: 10.1136/thoraxjnl-2015-207360.
Kapnadak SG, Dimango E, Hadjiliadis D, et al. Cystic Fibrosis Foundation consensus guidelines for the care of individuals with advanced cystic fibrosis lung disease. J Cyst Fibros. 2020;19(3): 344-354. doi:10.1016/j.jcf.2020.02.015.
Mogayzel PJ Jr, Naureckas ET, Robinson KA, et al. Cystic Fibrosis Foundation pulmonary guideline. pharmacologic approaches to prevention and eradication of initial Pseudomonas aeruginosa infection. Ann Am Thorac Soc. 2014;11(10): 1640-1650. doi: 10.1513/AnnalsATS.201404-166OC.
Mogayzel PJ Jr, Naureckas ET, Robinson KA, et al. Cystic fibrosis pulmonary guidelines. Chronic medications for maintenance of lung health. Am J Respir Crit Care Med. 2013;187(7): 680-689. doi: 10.1164/rccm.201207-1160oe
Ramos KJ, Smith PJ, McKone EF, et al. Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines. J Cyst Fibros. 2019;18(3): 321-333. doi:10.1016/j.jcf.2019.03.002.

Emotional Wellness. CFF.org. https://www.cff.org/Life-With-CF/Daily-Life/Emotional-Wellness/. Published 2021. Accessed July 14, 2021.
Georgiopoulos AM, Christon LM, Filigno SS, et al. Promoting emotional wellness in children with CF, part II: Mental health assessment and intervention. Pediatr Pulmonol. 2021;56 Suppl 1: S107-S122. doi:10.1002/ppul.24977
Mental Health Working Group | European Cystic Fibrosis Society (ECFS). Ecfs.eu. https://www.ecfs.eu/mental-health-working-group. Published 2021. Accessed May 28, 2021
Prieur MG, Christon LM, Mueller A, et al. Promoting emotional wellness in children with cystic fibrosis, Part I: Child and family resilience. Pediatr Pulmonol. 2021;56 Suppl 1:S97-S106. doi: 10.1002/ppul.24958.
Quittner AL, Abbott J, Georgiopoulos AM, et al. International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety. Thorax. 2016;71(1): 26-34. doi: 10.1136/thoraxjnl-2015-207488.
Smith BA, Georgiopoulos AM, & Quittner, et al. Maintaining mental health and function for the long run in cystic fibrosis Pediatric Pulmonology. 2016; 51(S44), S71–S78. doi-org.treadwell.idm.oclc.org/10.1002/ppul.23522.

Freedman SD, Wilschanski M (eds.) Best Practices in the Management of the Gastrointestinal Aspects of Cystic Fibrosis. J Cyst Fibros. 2017 Nov;16 Suppl.

Sloan DH, Hannum SM, DeGroot L, et al. Advance care planning shared decision-making tools for non-cancer chronic serious illness: a mixed method systematic review. [published online ahead of print, 2021 Feb 15]. Am J Hosp Palliat Care. 2021;1049909121995416. doi: 10.1177/1049909121995416.
Austin CA, Mohottige D, Sudore RL, et al. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med. 2015;175(7):1213-1221. doi: 10.1001/jamainternmed.2015.1679.
Oczkowski SJ, Chung HO, Hanvey L, et al. Communication tools for end-of-life decision-making in ambulatory care settings: a systematic review and meta-analysis. [published correction appears in PLoS One. 2018 Sep 7;13(9): e0203911]. PLoS One. 2016;11(4): e0150671. Published 2016 Apr 27. doi: 10.1371/journal.pone.0150671.
Chung HO, Oczkowski SJ, Hanvey L, et al. Educational interventions to train healthcare professionals in end-of-life communication: a systematic review and meta-analysis. BMC Med Educ. 2016;16:131. Published 2016 Apr 29. doi: 10.1186/s12909-016-0653-x.
Jain N, Bernacki RE. Goals of care conversations in serious illness: a practical guide. Med Clin North Am. 2020;104(3): 375-389. doi: 10.1016/j.mcna.2019.12.001.
Dy SM, Waldfogel JM, Sloan DH, et al. Integrating palliative care in ambulatory care of noncancer serious chronic illness [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); February 2021.

Wojtaszczyk A, Glajchen M, Portenoy RK, et al Trajectories of caregiver burden in families of adult cystic fibrosis patients. Palliat Support Care. 2018;16(6): 732-740. doi: 10.1017/S1478951517000918.
Glajchen M, Kornblith A, Homel P, et al. Development of a Brief Assessment Scale for Caregivers of the medically ill. J Pain Symptom Manage. 2005;29(3): 245-254. doi: 10.1016/j.jpainsymman.2004.06.017.
Besier T, Goldbeck L. Anxiety and depression in adolescents with CF and their caregivers. J Cyst Fibros. 2011;10(6): 435-42. doi: 10.1016/j.jcf.2011.06.012
Quittner AL, Goldbeck L, Abbott J, et al. 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(12): 1090-7. doi: 10.1136/thoraxjnl-2014-205983.
Trandel ET, Kavalieratos D, Basile M, et al. Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members. Pediatr Pulmonol. 2020;55(8): 2017-2024. doi: 10.1002/ppul.24806.
Glajchen M. Physical well-being of oncology caregivers: an important quality-of-life domain. Semin Oncol Nurs. 2012;28(4): 226-235. doi: 10.1016/j.soncn.2012.09.005.
Kim Y, Wellisch DK, Spillers RL, et al. Psychological distress of female cancer caregivers: effects of type of cancer and caregivers’ spirituality. Support Care Cancer. 2007;15(12): 1367-1374. doi: 10.1007/s00520-007-0265-4.

Provider Education

CF Foundation Guidelines

Palliative Care in CF

Perceptions about Palliative Care in CF Care

Management of Pain

Management of Constipation and Diarrhea

Management of Heartburn and Reflux

Management of Nausea and Vomiting

Management of Dyspnea and Pulmonary Conditions

Management of Depression and Anxiety

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Serious Illness Discussions

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