RESUMEN
Children with severe Group 1 pulmonary arterial hypertension (PAH) have an unpredictable response to subcutaneous treprostinil (TRE) therapy, which may be influenced by age, disease severity, or other unknown variables at time of initiation. In this retrospective single-center cohort study, we hypothesized that younger age at TRE initiation, early hemodynamic response (a decrease in pulmonary vascular resistance by ≥30% at follow-up catheterization), and less severe baseline hemodynamics (Rp:Rs < 1.1) would each be associated with better clinical outcomes. In 40 pediatric patients with Group I PAH aged 17 days-18 years treated with subcutaneous TRE, younger age (cut-off of 6-years of age, AUC 0.824) at TRE initiation was associated with superior 5-year freedom from adverse events (94% vs. 39%, p = 0.002), better WHO functional class (I or II: 88% vs. 39% p = 0.003), and better echocardiographic indices of right ventricular function at most recent follow-up. Neither early hemodynamic response nor less severe baseline hemodynamics were associated with better outcomes. Patients who did not have a significant early hemodynamic response to TRE by first follow-up catheterization were unlikely to show subsequent improvement in PVRi (1/8, 13%). These findings may help clinicians counsel families and guide clinical decision making regarding the timing of advanced therapies.
RESUMEN
PURPOSE: The study of patient satisfaction is a rapidly emerging area of importance within health care. High levels of patient satisfaction are associated with exceptional physician-patient communication, superior patient compliance, reduced risk of medical malpractice, and economic benefit in the value-based purchasing era. To our knowledge, no previous reports have evaluated methods to improve the patient experience within the pediatric hematology-oncology (PHO) outpatient clinic. METHODS: Patient satisfaction was measured using returned Press-Ganey surveys at Blank Children's Hospital PHO outpatient clinic (UnityPoint Health). The aim of this study was to raise the overall patient satisfaction score to the 75th percentile and raise the care provider score (CP) to the 90th percentile nationally. After analyzing data from 2013, interventions were implemented in January 2014, including weekly review of returned surveys, review of goals and progress at monthly staff meetings, distribution of written materials addressing deficiencies, score transparency among providers, provider use of Web-based patient satisfaction training modules, devotion of additional efforts to address less satisfied demographics (new patient consultations), and more liberal use of service recovery techniques. RESULTS: In the PHO outpatient clinic, overall patient satisfaction improved from the 56th to 97th percentile. Care provider scores improved from the 70th to 99 th percentile. For new patients, overall satisfaction improved from the 27th to 92 nd percentile, and care provider scores improved from the 29th to 98 th percentile. CONCLUSION: Patient satisfaction was improved in a midsize PHO clinic by implementing provider- and staff-driven initiatives. A combination of minor behavioral changes among care providers and staff in conjunction with systems-related modifications drove improvement.