Incorporating patient and caregiver feedback into lung transplant referral guidelines for individuals with cystic fibrosis—Preliminary findings from a novel paradigm

Smith, Patrick J.; Dunitz, Jordan M.; Lucy, Amy; Hempstead, Sarah E.; Tallarico, Erin; Faro, Albert; Pilewski, Joseph M.; Ramos, Kathleen J.

doi:10.1111/ctr.14038

Cited by 10 publications

(17 citation statements)

References 37 publications

(46 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…All participants felt that the information they received was appropriate for them. In contrast, a recent study of patients with cystic fibrosis undergoing transplantation identified the need to offer more detailed information to broaden their understanding of the situation, and also the need for greater coordination in treatment transition issues, earlier introduction of the transplant option, and broader social support (Smith et al, 2020 ). These differences are likely to be related to the point in the care process at which the study is carried out, since the perception of our participants may differ pre‐ and post‐transplant.…”

Section: Discussionmentioning

confidence: 99%

Expectations of patients awaiting lung transplantation: A qualitative study

et al. 2023

View full text Add to dashboard Cite

Aim The main aim of the present study is to examine the expectations and feelings of people awaiting lung transplantation. Background The assessment of the benefits of lung transplant should consider, among other things, the subjective perceptions of patients about the procedure, especially in relation to the context and to their values, goals and expectations. This is an issue that has not been studied in depth, especially in Spain. Design Exploratory qualitative study. Methods Data were collected through semi‐structured interviews during the period of being on the waiting list for transplantation. Thematic analysis of the data was supported by the Atlas.ti software. Results The study population comprised 16 patients awaiting lung transplant, a number sufficient to reach data saturation. Four categories were identified to describe patients' feelings and expectations: (1) reasons for undergoing the transplant, (2) expectations about life post‐transplant, (3) emotional state, and (4) relationship with the healthcare team. Conclusions Patients have high expectations of lung transplantation. They see it as offering them a second chance at life, although the future creates uncertainty. The healthcare professionals are identified as key actors, providing essential support and information throughout the various stages of the process. Future research should explore recipients' experiences of lung transplant at later stages. Relevance to clinical practice It is important to adapt care through all the lung transplant process, which is accompanied by intense and complex emotions since the beginning. Thus, providing social and psychological support from the beginning may contribute to their health status, helping them deal with all the emotions and feelings experienced, and find balance between expectations and reality. Patient or public contribution Sixteen patients awaiting lung transplant were interviewed. Interview transcripts were returned to participants to check for accuracy with their experiences.

show abstract

Section: Discussionmentioning

confidence: 99%

Expectations of patients awaiting lung transplantation: A qualitative study

et al. 2023

View full text Add to dashboard Cite

show abstract

“…30 Conversely, encouraging research is emerging regarding the significant and positive impact of CFTR modulators elexacaftor/tezacaftor/ ivacaftor and ivacaftor (Trikafta and Kalydeco, Vertex Pharmaceuticals Incorporated) on many facets of self, including self-image, selfconfidence, autonomy, and physical self-esteem. 31,32 Interestingly however one study reports expression of concerns regarding drug dependency and body representation changes in a small number of participants. 32 Future CF self-concept research needs to factor in the era of CFTR modulator care to ensure self-concept understanding F I G U R E 2 Self-concept dimensions.…”

Section: Self-concept and Health-related Outcomesmentioning

confidence: 99%

“…Not specified Lung transplanted Smith et al 31 Clinical strategies to enhance self-efficacy surrounding lung transplantation process: 1. Early transplant conversations when patients are healthier may decrease anticipatory fear and facilitate proactive engagement with transplant providers once appropriate.…”

Section: Clinical Recommendations Sample and Authorsmentioning

confidence: 99%

“…31 Patients with a "CF fighter" identity can be encouraged to channel this into transplant-related preparation, with reference to public figures with "fighter" personalities that can be easily delineated from their disease, such as Muhammad Ali (Parkinson's Disease). 31 The power of peer support during the lung transplant process, and in fact generally, is also viewed as a prominent tool for enhancing self-esteem and self-identity. 31,41 Online peer communication provides a safe place for patients to discuss concerns and strategies for living with CF, normalize feelings and share emotional and social experiences.…”

Section: Enhancing Self-esteem and Self-identitymentioning

confidence: 99%

“…31 The power of peer support during the lung transplant process, and in fact generally, is also viewed as a prominent tool for enhancing self-esteem and self-identity. 31,41 Online peer communication provides a safe place for patients to discuss concerns and strategies for living with CF, normalize feelings and share emotional and social experiences. 41 T A B L E 1 (Continued)…”

Section: Enhancing Self-esteem and Self-identitymentioning

confidence: 99%

See 2 more Smart Citations

Me, myself, and I: A systematic review of cystic fibrosis and self‐concept

Harrigan,

Jessup,

Bennett

et al. 2024

Pediatric Pulmonology

View full text Add to dashboard Cite

Given extensive pertinent disease factors and evolving medical treatments, this systematic review explores qualitative and quantitative cystic fibrosis (CF) research surrounding self‐concept, an overarching perception of self. Research methodologies, self‐concept dimensions, prominent self‐concept findings and clinical recommendations are identified. Preferred Reporting Items for Systematic Review and Meta‐analyses guidelines were applied. PubMed, Scopus, Medline, Psycinfo, CINAHL (ebsco), and CENTRAL Cochrane electronic databases were searched from 2012 to 2022. Methodological quality was assessed using the critical appraisal skills program. Data‐based convergent synthesis was applied to analyze and report on qualitative and quantitative studies in parallel. Thirty‐seven publications met the inclusion criteria, most of which employed a cross‐sectional, single‐center design within an adolescent and adult population. Self‐efficacy, self‐esteem, and self‐identity studies were dimensions of self‐concept identified, with studies relating to self‐efficacy surrounding physical health management most prevalent. All three dimensions were positively associated with improved treatment adherence and psychosocial health. Efficacy tested intervention programs to enhance self‐concept are limited; however, an extensive range of clinical recommendations are offered, highlighting the importance of clinician self‐concept awareness, quality clinician–patient conversations and online CF peer‐support. Self‐concept is an important mechanism to optimize patient outcomes. Further CF self‐concept research is required, particularly multicenter, longitudinal, and interventional studies. Early childhood, post lung transplant and the older adult CF population in particular, lack research attention. Given the potential impact of rapidly evolving CF transmembrane conductance regulator modulator drugs on many aspects of self, future self‐concept research beyond the dimension of self‐efficacy may be beneficial.

show abstract

A survey of cystic fibrosis physicians' views on lung transplant referral in the era of elexacaftor/tezacaftor/ivacaftor

Burdis,

Milinic,

Bartlett

et al. 2024

Pediatric Pulmonology

View full text Add to dashboard Cite

RationaleIn 2015, a survey of cystic fibrosis (CF) physicians showed significant gaps in lung transplant (LTx) referral knowledge. Subsequently, LTx referral guidelines for people with CF were published, and elexacaftor/tezacaftor/ivacaftor (ETI) became available for >80% of people in the United States (US). We sought to assess physicians’ LTx referral knowledge and self‐reported referral practices.MethodsCF center directors in the US were surveyed about LTx. Questions addressed transplant referral indications, contraindications, testing, and the impact of ETI on referral timing. Thematic analysis was used to assess responses to open‐ended questions.ResultsThere were 110/309 (36%) responses. Respondents identified several referral indications, including rapid decline in FEV1 (93%), recurrent hemoptysis (80%), hypoxemia (79%), and pulmonary hypertension (75%). Over 70% of respondents reported using oximetry, echocardiogram, and blood gas to assess disease severity. Respondents were more likely to find early LTx discussions useful for patients not on modulators versus on modulators (87% vs. 63%, p < .005). Most respondents (66%) reported delaying LTx referral for some patients with FEV1 30%–40% who met criteria, while 26% had delayed referral for patients with FEV1 < 30%. Uncertainty regarding optimal LTx referral timing for patients on ETI was a prominent theme of the qualitative analysis.ConclusionsWhile physician knowledge about LTx referral indications appears improved since the CF referral guidelines were published, uncertainty about referral timing is pervasive, and the guidelines will need to be updated as more data become available about the long‐term effectiveness of ETI in advanced lung disease.

show abstract

Incorporating patient and caregiver feedback into lung transplant referral guidelines for individuals with cystic fibrosis—Preliminary findings from a novel paradigm

Cited by 10 publications

References 37 publications

Expectations of patients awaiting lung transplantation: A qualitative study

Expectations of patients awaiting lung transplantation: A qualitative study

Me, myself, and I: A systematic review of cystic fibrosis and self‐concept

A survey of cystic fibrosis physicians' views on lung transplant referral in the era of elexacaftor/tezacaftor/ivacaftor

Contact Info

Product

Resources

About