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The aim of this study is to evaluate quality of life in four domains (physical, emotional, social, and school) in pediatric patients with pulmonary hypertension (PH) using a validated survey (PedsQL). This is a prospective cohort study of pediatric patients aged 2–18 years with PH. Parents of all children and patients aged 8–18 years with appropriate developmental capacity completed the PedsQL survey in the clinic. Results were compared with published norms for pediatric patients, those with congenital heart disease (CHD) and cancer. Thirty-three children were enrolled yielding 32 parent and 18 patient self-reports: seven patients were aged 2–4 years; three were aged 5–7 years; 11 were aged 8–12 years, and 12 were aged 13–18 years. Twenty-one patients were classified as World Health Organization (WHO) Group I pulmonary arterial hypertension (PAH), 11 WHO Group III PH due to lung disease, and one WHO Group V with segmental PH. Thirteen patients were NYHA functional class (FC) 1, 12 were FC 2, eight were FC 3, and none were FC 4. The PH cohort had significantly lower scores than healthy children in all domains on both parent and self-report. The PH cohort also had significantly lower scores than patients with CHD (parent report: total, physical, social, school; patient self-report: total, physical, school) and cancer (parent report: school; patient self-report: physical, school). Close to 50% of participants reported at risk scores in each domain. The quality of life in pediatric PH patients assessed by PedsQL revealed functional impairment in multiple domains. Administration of the PedsQL during outpatient encounters may provide an easy, reproducible method to assess quality of life and direct referral for interventional services.

Nurses have a critical role in family development of competencies for giving care to very low birth-weight infants. However, current information-based methods of preparation may be inadequate for competency development. This article describes a continuing education program designed to strengthen nurses’ support of families in developing caregiving competencies through processes of guided participation. Program effectiveness was explored with: (1) a survey of participant and non-participant nurse satisfaction with family work and with organizational resources and practices; (2) a description of relationship and caregiving competencies for mothers who had and had not received guided participation; and (3) a review of mothers’ reports of their experience either with or without guided participation. Organizational arrangements and mechanisms for establishing guided participation practice within an agency, including ongoing reflective supervision sessions, peer collaboration, and documentation of competency development, are discussed.

Background: Colorectal cancer (CRC) screening is effective in the prevention and early detection of cancer. Implementing evidence-based screening guidelines remains a challenge, especially in Federally Qualified Health Centers (FQHCs), where current rates (43%) are lower than national goals (80%), and even lower in populations with limited English proficiency (LEP) who experience increased barriers to care related to systemic inequities. Methods: This quality improvement (QI) initiative began in 2016, focused on utilizing patient navigation and practice facilitation to addressing systemic inequities and barriers to care to increase CRC screening rates at an urban FQHC, with two clinical locations (the intervention and control sites) serving a diverse population through culturally tailored education and navigation. Results: Between August 2016 and December 2018, CRC screening rates increased significantly from 31% to 59% at the intervention site (p < 0.001), with the most notable change in patients with LEP. Since 2018 through December 2022, navigation and practice facilitation expanded to all clinics, and the overall CRC screening rates continued to increase from 43% to 50%, demonstrating the effectiveness of patient navigation to address systemic inequities. Conclusions: This multilevel intervention addressed structural inequities and barriers to care by implementing evidence-based guidelines into practice, and combining patient navigation and practice facilitation to successfully increase the CRC screening rates at this FQHC.