Lung transplant referral considerations for individuals with cystic fibrosis.

PURPOSE OF REVIEW: The cystic fibrosis (CF) Foundation issued guidelines to promote timely lung transplant referral for people with cystic fibrosis (pwCF) in 2019. Since then more has been published to help refine this complex decision. The goal of this review is to summarize the recent literature informing disease severity in CF, barriers to referral for pwCF and guide timely and appropriate lung transplant referrals. RECENT FINDINGS: Existing guidelines utilize the degree of airflow limitation as the primary criteria to refer for lung transplant, yet this variable has some prognostic uncertainty. Novel prognostic tools may provide more reliable metrics for predicting who with CF is at greatest risk of dying from their lung disease and could be used as an indicator for when to refer. In addition, updated analyses of national registry data have highlighted the significance of hemoptysis, low body mass index, and extra-pulmonary organ failure, as important prognostic markers. PwCF with these complications have historically been under-referred for lung transplant despite data suggesting lung transplant can be safe for some in these populations. Early referral should be considered in the presence of these complications. SUMMARY: This review builds on existing guidelines by incorporating novel data to better determine when lung transplant referral is most appropriate. Improved prognostic tools are still needed to decrease the chances of pwCF dying without consideration of lung transplant. It is still unclear how novel therapies for CF may change the need and timing for lung transplant referral.

Uncertainty and Communication Preferences Among Patients Undergoing Lung Transplant Evaluation: A Mixed-Methods Study.

OBJECTIVE: Higher uncertainty is associated with poorer quality of life and may be impacted by clinician communication about the future. We determined how patients undergoing lung transplant evaluation experience uncertainty and communication about the future from clinicians. METHODS: We performed a convergent parallel mixed-methods study using a cross-sectional survey and semistructured interviews. Patients undergoing lung transplant evaluation at the University of Colorado and the University of Washington answered questions about future communication and completed the Mishel Uncertainty in Illness Scale-Adult (MUIS-A; range 33-165, higher scores indicate more uncertainty). Interviews were analyzed using content analysis. Integration of survey and interview results occurred during data interpretation. RESULTS: A total of 101 patients completed the survey (response rate: 47%). Twelve survey participants completed interviews. In the survey, most patients identified changing family roles as important (76%), which was infrequently discussed with clinicians (31%). Most patients (86%) worried about the quality of their life in the future, and 74% said that not knowing what to expect in the future prevented them from making plans. The mean MUIS-A score was 85.5 (standard deviation 15.3). Interviews revealed three themes: (1) uncertainty of the future distresses participants; (2) participants want practical information from clinicians; and (3) communication preferences vary among participants. CONCLUSION: Participants experienced distressing uncertainty and wanted information about the future. Communication topics that were important to participants were not always addressed by physicians. Clinicians should address how chronic lung disease and lung transplant can directly impact patients' lives and support patients to cope with uncertainty.

Understanding the language barriers to translating informed consent documents for maternal health trials in Zambia: a qualitative study.

OBJECTIVE: Providing comprehensible information is essential to the process of valid informed consent. Recruitment materials designed by sponsoring institutions in English-speaking, high-income countries are commonly translated for use in global health studies in other countries; however, key concepts are often missed, misunderstood or 'lost in translation'. The aim of this study was to explore the language barriers to informed consent, focusing on the challenges of translating recruitment materials for maternal health studies into Zambian languages. DESIGN: We used a qualitative approach, which incorporated a multistakeholder workshop (11 participants), in-depth interviews with researchers and translators (8 participants) and two community-based focus groups with volunteers from community advisory boards (20 participants). Content analysis was used to identify terms commonly occurring in recruitment materials prior to the workshop. The framework analysis approach was used to analyse interview data, and a simple inductive thematic analysis approach was used to analyse focus group data. SETTING: The study was based in Lusaka, Zambia. RESULTS: The workshop highlighted difficulties in translating research terms and pregnancy-specific terms, as well as widespread concern that current templates are too long, use overly formal language and are designed with little input from local teams. Framework analysis of in-depth interviews identified barriers to participant understanding relating to design and development of recruitment materials, language, local context and communication styles. Focus group participants confirmed these findings and suggested potential solutions to ensure the language and content of recruitment materials can be better understood. CONCLUSION: Our findings demonstrate that the way in which recruitment materials are currently designed, translated and disseminated may not enable potential trial participants to fully understand the information provided. Instead of using overly complex institutional templates, recruitment materials should be created through an iterative and interactive process that provides truly comprehensible information in a format appropriate for its intended participants.