A service evaluation of an integrated model of palliative care of cystic fibrosis

Palliative Medicine
Stephen J BourkeRachel Quibell

Abstract

Patients with advanced cystic fibrosis have severe symptoms with a complex trajectory of exacerbations and recovery. They are often awaiting lung transplantation, and many die without receiving specialist palliative care. We introduced an integrated model whereby palliative specialists joined the cystic fibrosis team to provide palliative care in parallel with standard care. A service evaluation of this model of care was undertaken in a prospective case series documenting symptoms and outcomes, the views of the cystic fibrosis team and the experience of the palliative specialists. Over 3 years, 28 (10%) of 282 patients attending the cystic fibrosis centre had specialist palliative care. They had advanced lung disease (mean forced expiratory volume in 1 s (FEV1) = 0.86 L (25% predicted)), and 17 died: 6 were on a transplant waiting list at death; 10 were unsuitable and 1 died post transplantation. All who died over these 3 years had specialist palliative care. Four patients had successful transplants. Assessment showed a high prevalence of breathlessness, cough, pain, vomiting and fatigue, with a significant impact on daily life. The cystic fibrosis team rated this model of care highly, felt that palliative care should be member...Continue Reading

References

Apr 1, 1995·Palliative Medicine·J E EllershawL C Boys
May 8, 2007·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Elisabeth P DellonTerry L Noah
Aug 23, 2008·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Annemarie LeeBrenda Button
Mar 30, 2011·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Maxine BraithwaiteJohn Wilson
Jun 17, 2011·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Dorota SandsSusan Madge
Aug 28, 2012·Chest·Rebecca E ColmanLianne G Singer
May 27, 2014·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Alan R SmythSue Wolfe
Dec 20, 2014·Palliative Medicine·Mohana KarlekarBonnie Slovis

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Citations

Oct 5, 2017·American Journal of Transplantation : Official Journal of the American Society of Transplantation and the American Society of Transplant Surgeons·K WentlandtE Kaya
Jul 4, 2019·Western Journal of Nursing Research·Elizabeth T TrandelDio Kavalieratos
Apr 4, 2020·Progress in Transplantation : Official Publication, North American Transplant Coordinators Organization ... [et Al.]·Patricia C PawlowMary Ersek
Dec 22, 2019·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Elizabeth T TrandelDio Kavalieratos

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Methods Mentioned

BETA
cognitive behavioural therapy

Software Mentioned

PaCA

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