Implementation of the International Consortium of Health Outcomes Measurement CHD standard set in patients undergoing pulmonary valve replacement.

BACKGROUND: Despite the burden of CHD, a high cost and utilization condition, an implementation of long-term outcome measures is lacking. The objective of this study is to pilot the implementation of the International Consortium of Health Outcomes Measurement CHD standard set in patients undergoing pulmonary valve replacement, a procedure performed in mostly well patients with diverse CHD. METHODS: Patients ≥ 8 years old undergoing catheterization-based pulmonary valve replacement were approached via various approaches for patient-reported outcomes, with a follow-up assessment at 3 months post-procedure. Implementation strategy analysis was performed via a hybrid type 2 design. RESULTS: Of the 74 patients undergoing pulmonary valve replacement, 32 completed initial patient-reported outcomes with variable response rates by strategy (email and in-person explanation 100%, email only 54%, and email followed by text/call 64%). Ages ranged 8-67 years (mean 30). Pre-procedurally, 34% had symptomatic arrhythmias, which improved post-procedure. For those in school, 43% missed ≥ 6 days per year, and over half had work absenteeism. Financial concerns were reported in 34%. Patients reported high satisfaction with life (50% [n = 16]) and health-related quality of life (90% [n = 26]). Depression symptoms were reported in 84% (n = 27) and anxiety in 62.5% (n = 18), with tendency towards improvement post-procedurally. CONCLUSION: Pilot implementation of the International Consortium of Health Outcomes Measurement CHD standard set in pulmonary valve replacement patients reveals a significant burden of disease not previously reported. Barriers to the implementation include a sustainable, automated system for patient-reported outcome collection and infrastructure to assess in real time. This provides an example of implementing cardiac outcomes set in clinical practice.

Association between the "Timed Up and Go Test" at transplant evaluation and outcomes after kidney transplantation.

BACKGROUND: Studies have demonstrated the Timed Up and Go Test's (TUGT) ability to forecast postoperative outcomes for several surgical specialties. Evaluations of the TUGT for waitlist and posttransplant outcomes have yet to be examined in kidney transplantation. OBJECTIVE: To assess the prognostic utility of the TUGT and its associations with waitlist and posttransplant outcomes for kidney transplant candidates. DESIGN AND METHODS: Single-center, prospective study of 518 patients who performed TUGT during their transplant evaluation between 9/1/2013-11/30/2014. TUGT times were evaluated as a continuous variable or 3-level discrete categorical variable with TUGT times categorized as long (>9 seconds), average (8-9 seconds), or short (5-8 seconds). RESULTS: Transplanted individuals had shorter TUGT times than those who remained on the waitlist (8.99 vs 9.79 seconds, P < 0.001). Bivariable and multivariable logistic regression showed that after adjusting for age, there was no association between TUGT times and probability of waitlist removal (OR 0.997 [0.814-1.221]), prolonged length of stay posttransplant (OR 1.113 [0.958-1.306] for deceased donor, OR 0.983 [0.757-1.277] for living donor), and 30-day readmissions (OR 0.984 [0.845-1.146] for deceased donor, OR 1.254 [0.976-1.613] for living donor). CONCLUSIONS: The TUGT was not associated with waitlist removal or prolonged hospitalization for kidney transplant candidates. Alternative assessments of global health, such as functional status or frailty, should be considered for evaluation of potential kidney transplant candidates.

Patients prioritize waitlist over posttransplant outcomes when evaluating kidney transplant centers.

Factors that patients value when choosing a transplant center have not been well studied. In order to guide the improvement of patient-facing materials, we conducted an anonymous electronic survey of patients that assessed the relative importance of patient experience, practical considerations, transplant center reputation, center experience, and waitlist when selecting a transplant center. A total of 409 respondents completed the survey, of whom 68% were kidney transplant recipients and 32% had chronic kidney disease or were on dialysis. Participants had mean age 56 ± 12 years and were predominantly female (61%), white (79%), and had an associate's degree or higher (68%). Participants most often prioritized waitlist when evaluating transplant centers (transplanted 26%, chronic kidney disease 40%), and waitlist was almost twice as likely as outcomes to be ranked most important (30% vs 17%). Education level and transplant status were significantly associated with factors used for center prioritization. Waitlisted respondents most commonly (48%) relied on physicians for information when selecting a center, while a minority cited transplant-specific organizations. In order to improve shared decision-making, materials outlining center-specific waitlist features should be prioritized. Novel patient-oriented metrics for measuring transplant center quality that align with patient priorities must be explored.