WS18.4 Evaluation of transplantation information delivered to patients and their relatives by the professionals from cystic fibrosis centres and transplant centres and from transplanted peer-patients in France

Veríssimo, David; Perrin, Amandine; Pougneon-Bertrand, D.; Kanaan, R.; Kerbrat, M.; Rhun, Anne Le

doi:10.1016/s1569-1993(18)30223-6

Cited by 1 publication

(1 citation statement)

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“…Although the majority of these individuals were in the process of lung transplant assessment or had been declined for LTx, 39% of these potentially eligible individuals with CF had never been considered for transplant [2]. A subsequent survey of French centers [92] proposed an earlier structured approach to transplant assessment including improved patient and caregiver education and earlier discussions of transplant options. These studies, in countries with well-established transplant programs and specialized CF centers, highlight that transplant referral challenges are worldwide and that barriers to early referral need to be identified and overcome.…”

Section: International Considerationsmentioning

confidence: 99%

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

Ramos

Smith

McKone

et al. 2019

Journal of Cystic Fibrosis

185

145

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Objective: Provide recommendations to the cystic fibrosis (CF) community to facilitate timely referral for lung transplantation for individuals with CF. Methods: The CF Foundation organized a multidisciplinary committee to develop CF Lung Transplant Referral Consensus Guidelines. Three workgroups were formed: timing for transplant referral; modifiable barriers to transplant; and transition to transplant care. A focus group of lung transplant recipients with CF and spouses of CF recipients informed guideline development. Results: The committee formulated 21 recommendation statements based on literature review, committee member practices, focus group insights, and in response to public comment. Critical approaches to optimizing access to lung transplant include early discussion of this treatment option, assessment for modifiable barriers to transplant, and open communication between the CF and lung transplant centers. Conclusions: These guidelines will help CF providers counsel their patients and may reduce the number of individuals with CF who die without consideration for lung transplant.

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Section: International Considerationsmentioning

confidence: 99%