Feasbility of Informed Choices: A Decision Aid for Cystic Fibrosis Adults and Their Surrogates in Lung Transplant and Mechanical Ventilation

Polo, Jennifer; Basile, Melissa; Wang, Janice; Hadjiliadis, Denis; Goggin, Jessica; Zhang, Meng; Hajizadeh, Negin

doi:10.1016/j.chest.2020.08.1198

Cited by 2 publications

(10 citation statements)

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“…85%–100% of patients would recommend the PDA to someone else 35,37,42 . All three studies including clinician participants found that the majority considered the PDA acceptable 35,38,39 . Patzer et al.…”

Section: Resultsmentioning

confidence: 99%

“…Three studies reported on decisional conflict, a standardized measure of uncertainty around a decision 38,39,42 . Vandeheem et al 42 .…”

Section: Resultsmentioning

confidence: 99%

“…Pritchard et al 40 had a high risk-of-bias due to the pragmatic study design (staff determining study enrolment were influenced by time limitations). Two studies were abstracts 33,39,47 the PDA and those who declined were used as the comparison group).…”

Section: Risk-of-bias Assessmentmentioning

confidence: 99%

“…35,37,42 All three studies including clinician participants found that the majority considered the PDA acceptable. 35,38,39 Note: For RCT the knowledge before and after use of intervention is reported for PDA compared to controls. This is the same for non-randomized studies however as they cannot be compared they are reported separately.…”

Section: Acceptabilitymentioning

confidence: 99%

“…Despite this, the effectiveness of PDAs for transplantation has not been systematically analyzed, thus it is unclear whether they are effective in this field. There are an increasing number of PDAs for organ transplantation including some in current use 32–47 . It is therefore necessary to assess whether PDAs are effective for knowledge and decisions about organ transplantation.…”

Section: Introductionmentioning

confidence: 99%

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Do patient decision aids help people who are facing decisions about solid organ transplantation? A systematic review

Irish

Weightman

Hersch

et al. 2023

Clinical Transplantation

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Background Decisions about solid organ transplantation are complex. Patient decision aids (PDAs) enhance traditional education, by improving knowledge and supporting patients to align their values with treatments. There are increasing numbers of transplantation PDAs, however, it is unclear whether these are effective. We conducted a systematic review of studies assessing the impact of PDA use in transplantation. Methods We searched the Cochrane Register of Controlled Trials, CINAHL, EMBASE, MEDLINE, and PsycINFO databases from database inception to October 26, 2020. We included primary studies of solid organ transplantation PDAs defined by the International Patient Decision Aids Standards. All comparators and reported outcomes were included. Mean difference in knowledge (before vs. after) was standardized on a 100‐point scale. Pooled‐effect for PDAs was calculated and compared to the standard of care for randomized controlled trials (RCTs) and meta‐analyzed using random effects. Analysis of all other outcomes was limited due to heterogeneity (PROSPERO registration, CRD42020215940). Results Seven thousand four hundred and sixty‐three studies were screened, 163 underwent full‐text review, and 15 studies with 4278 participants were included. Nine studies were RCTs. Seven RCTs assessed knowledge; all demonstrated increased knowledge with PDA use (mean difference, 8.01;95%CI 4.69–11.34, p < .00001). There were many other outcomes, including behavior and acceptability, but these were too heterogenous and infrequently assessed for meaningful synthesis. Conclusions This review found that PDAs increase knowledge compared to standard education, though the effect size is small. PDAs are mostly considered acceptable; however, it is difficult to determine whether they improve other decision‐making components due to the limited evidence about non‐knowledge‐based outcomes.

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Section: Resultsmentioning

confidence: 99%

“…Three studies reported on decisional conflict, a standardized measure of uncertainty around a decision 38,39,42 . Vandeheem et al 42 .…”

Section: Resultsmentioning

confidence: 99%

Section: Risk-of-bias Assessmentmentioning

confidence: 99%

Section: Acceptabilitymentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Do patient decision aids help people who are facing decisions about solid organ transplantation? A systematic review

Irish

Weightman

Hersch

et al. 2023

Clinical Transplantation

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Take on transplant: human-centered design of a patient education tool to facilitate informed discussions about lung transplant among people with cystic fibrosis

Hartzler

Bartlett

Hobler

et al. 2022

Journal of the American Medical Informatics Association

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Objective Lung transplant (LTx) saves lives in cystic fibrosis (CF). However, many potential candidates express uncertainty about LTx and die before receiving this treatment. CF guidelines recommend LTx education and clinical discussions well before the need for LTx arises, but limited patient resources exist. Materials and Methods We engaged people with CF and CF physicians in human-centered design of “Take On Transplant” (TOT), a web-based education tool to prepare patients for LTx discussions. Across 3 phases, needs assessment, design groups, and iterative user testing of TOT, we refined TOT from wireframe prototypes, to an interactive website, to a fully functional intervention ready for clinical trials. Results Fifty-five people with CF and 105 physicians identified information needs to prepare for LTx discussions. Design groups (n = 14 participants) then established core requirements: didactic education (“Resource Library”), patient narratives (“CF Stories”), frequently asked questions (“FAQ”), and self-assessment to tailor content (“My CF Stage”). Iterative usability testing (n = 39) optimized the design of CF Stories and prototype layout. We then developed the TOT website and demonstrated feasibility and preliminary efficacy of use through 2-week field testing (n = 9). Discussion Our human-centered design process provided guidance for educational tools to serve the evolving needs of potential LTx candidates. Our findings support the process of patient deliberation as a foundation for shared decision-making in CF, and inform educational tools that could potentially translate beyond LTx. Conclusion TOT fills a critical gap in preparing people with CF for shared decision-making about LTx and may serve as a model for educational tools for other preference-sensitive decisions.

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Feasbility of Informed Choices: A Decision Aid for Cystic Fibrosis Adults and Their Surrogates in Lung Transplant and Mechanical Ventilation

Cited by 2 publications

References 0 publications

Do patient decision aids help people who are facing decisions about solid organ transplantation? A systematic review

Do patient decision aids help people who are facing decisions about solid organ transplantation? A systematic review

Take on transplant: human-centered design of a patient education tool to facilitate informed discussions about lung transplant among people with cystic fibrosis

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