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

Abstract

In order for people with advanced Cystic Fibrosis (CF) to engage in advance care planning (ACP) about lung transplant and invasive mechanical ventilation (IMV), we designed the InformedChoices decision aid (DA) website.1 Herein, we present results of our DA feasibility study. METHODS: Adults with advanced CF (FEV1<40%), their surrogates and CF clinicians were enrolled in a multi-site study with 2 time points (T1/T2). At T1, patients completed surveys and viewed the DA with a clinician. 1 month later (T2), patients returned with a surrogate, completed surveys, and had an in-depth ACP discussion with a clinician using the DA. Patients also used the DA at home between visits. We assessed: changes in patient knowledge and decisional conflict at T1 and before/after T2, and feasibility and acceptability of the decision for patients, surrogates and clinicians post T2.

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

“…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.…”

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

“…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).…”

“…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.…”

“…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.…”