Measuring What Matters to Children With Medical Complexity and Their Families.

The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) was designed with a foundational commitment to partnership with family leaders to codesign and improve systems of care and supports for CMC and their families - this fundamental commitment was essential to the CMC CoIIN's measurement strategy. In this paper, we examine key learnings from partnering with family leaders from interdisciplinary state teams in the CMC CoIIN to identify and define quantitative quality improvement measures to improve care and support for CMC and their families, including quality of life, well-being, and flourishing; unmet health needs; and support systems such as medical home, patient and family engagement, and shared plans of care. Codesigning the CMC CoIIN measurement strategy with family leaders greatly enhanced our measurement approach and provided numerous unique learning opportunities for the CMC CoIIN's project team and state teams.

Linking Parent Confidence and Hospitalization through Mobile Health: A Multisite Pilot Study.

OBJECTIVE: To evaluate the associations between parent confidence in avoiding hospitalization and subsequent hospitalization in children with medical complexity (CMC); and feasibility/acceptability of a texting platform, Assessing Confidence at Times of Increased Vulnerability (ACTIV), to collect repeated measures of parent confidence. STUDY DESIGN: This prospective cohort study purposively sampled parent-child dyads (n = 75) in 1 of 3 complex care programs for demographic diversity to pilot test ACTIV for 3 months. At random days/times every 2 weeks, parents received text messages asking them to rate confidence in their child avoiding hospitalization in the next month, from 1 (not confident) to 10 (fully confident). Unadjusted and adjusted generalized estimating equations with repeated measures evaluated associations between confidence and hospitalization in the next 14 days. Post-study questionnaires and focus groups assessed ACTIV's feasibility/acceptability. RESULTS: Parents were 77.3% mothers and 20% Spanish-speaking. Texting response rate was 95.6%. Eighteen hospitalizations occurred within 14 days after texting, median (IQR) 8 (2-10) days. When confidence was <5 vs ≥5, adjusted odds (95% CI) of hospitalization within 2 weeks were 4.02 (1.20-13.51) times greater. Almost all (96.8%) reported no burden texting, one-third desired more frequent texts, and 93.7% were very likely to continue texting. Focus groups explored the meaning of responses and suggested ACTIV improvements. CONCLUSIONS: In this demographically diverse multicenter pilot, low parent confidence predicted impending CMC hospitalization. Text messaging was feasible and acceptable. Future work will test efficacy of real-time interventions triggered by parent-reported low confidence.

Families of Children With Medical Complexity: A View From the Front Lines.

This article, written by a group of experienced parents of children with medical complexity (CMC), provides an overview of the demands of managing care from their unique perspective. The article articulates why attention to understanding the challenges that families of CMC face with a fragmented health care system, inadequate health insurance coverage, deficits in the delivery of medical care, and problems accessing other critical services (as well as lack of support for children and adolescents in developing and exercising self-management skills) are vital to efforts to improve the current system and positively impact the life course of vulnerable populations. The authors discuss the financial and intangible costs experienced by families of CMC and other stakeholders (including providers, payers, and others), as well as the benefits that can result when effective, flexible, comanaged team-based care coordination is provided within the environment that is the most natural locus of care for the family. The authors detail the role of policy strategies that provide protections for CMC and the importance of family-led advocacy and support organizations in helping families "on the front lines." Throughout the article, the case is made that families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for CMC. The experiences of families of CMC should inform and guide efforts to improve systems of care, thus positively impacting the life course of this vulnerable population.

Validation of New Quality Measures for Transitions Between Sites of Care.

BACKGROUND AND OBJECTIVE: Assessing and improving the quality of transitions to home from the emergency department (ED) or hospital is critical for patient safety. Our objective was to validate 8 newly developed caregiver-reported measures of transition quality. METHODS: This prospective observational study included 1086 caregiver survey respondents whose children had an ED visit (n = 523) or hospitalization (n = 563) at Seattle Children's Hospital in 2014. Caregivers were contacted to complete 2 surveys. The first survey included the newly developed transition quality measures and multiple validation measures including modified versions of Child Hospital Consumer Assessments of Healthcare Providers and Systems (HCAHPS) composites, assessing communication and discharge planning. The second survey (administered 30 days later) included questions about follow-up appointments and ED return visits and readmissions. Using multivariate regression, we examined associations between the newly developed transition quality measures and each validation measure. RESULTS: All transition quality measures were significantly associated with ≥1 validation measures. The hospital-to-home transition measure assessing whether discharge instructions were easy to understand, were useful, and contained necessary follow-up information had the largest association with the Child HCAHPS nurse-parent and doctor-parent communication composites (ß = 55.6; 95% confidence interval, 43 to 68.3; and ß = 48.3; 95% confidence interval, 36.3 to 60.3, respectively, scaled to reflect change associated with a 0 to 100 change in the transition measure score). CONCLUSIONS: Newly developed quality measures for pediatric ED- and hospital-to-home transitions were significantly and positively associated with previously validated measures of caregiver experience. These new measures may be useful for assessing and improving on the quality of ED- and hospital-to-home transitions.

Development and Pilot Testing of Caregiver-Reported Pediatric Quality Measures for Transitions Between Sites of Care.

BACKGROUND: Few measures exist to assess pediatric transition quality between care settings. The study objective was to develop and pilot test caregiver-reported quality measures for pediatric hospital and emergency department (ED) to home transitions. METHODS: On the basis of an evidence review, we developed draft caregiver-reported quality measures for transitions between sites of care. Using the RAND-UCLA Modified Delphi method, a multistakeholder panel endorsed measures for further development. Measures were operationalized into 2 surveys, which were administered to caregivers of patients (n = 2839) discharged from Seattle Children's Hospital between July 1 and September 1, 2014. Caregivers were randomized to mail or telephone survey mode. Measure scores were computed as a percentage of eligible caregivers who endorsed receiving the indicated care. Differences in scores were examined according to survey mode and caregiver characteristics. RESULTS: The Delphi panel endorsed 6 of 8 hospital to home transition measures and 2 of 3 ED to home transitions measures. Scores differed significantly according to mode for 1 measure. Caregivers with lower levels of educational attainment and/or Spanish-speaking caregivers reported significantly higher scores on 3 of the measures. The largest difference was reported for the measure that assessed whether caregivers received assistance with scheduling follow-up appointments; 92% score for caregivers with lower educational attainment versus 79% for caregivers with higher educational attainment (P < .001). CONCLUSIONS: We developed 8 new, evidence-based quality measures to assess transition quality from the perspective of caregivers. Pilot testing of these measures in a single institution yielded valuable insights for future testing and implementation of these measures.

Quality Measures to Assess Care Transitions for Hospitalized Children.

BACKGROUND: Transitions between sites of care are inherent to all hospitalizations, yet we lack pediatric-specific transitions-of-care quality measures. We describe the development and validation of new transitions-of-care quality measures obtained from medical record data. METHODS: After an evidence review, a multistakeholder panel prioritized quality measures by using the RAND/University of California, Los Angeles modified Delphi method. Three measures were endorsed, operationalized, and field-tested at 3 children's hospitals and 2 community hospitals: quality of hospital-to-home transition record content, timeliness of discharge communication between inpatient and outpatient providers, and ICU-to-floor transition note quality. Summary scores were calculated on a scale from 0 to 100; higher scores indicated better quality. We examined between-hospital variation in scores, associations of hospital-to-home transition quality scores with readmission and emergency department return visit rates, and associations of ICU-to-floor transition quality scores with ICU readmission and length of stay. RESULTS: A total of 927 charts from 5 hospitals were reviewed. Mean quality scores were 65.5 (SD 18.1) for the hospital-to-home transition record measure, 33.3 (SD 47.1) for the discharge communication measure, and 64.9 (SD 47.1) for the ICU-to-floor transition measure. The mean adjusted hospital-to-home transition summary score was 61.2 (SD 17.1), with significant variation in scores between hospitals (P < .001). Hospital-to-home transition quality scores were not associated with readmissions or emergency department return visits. ICU-to-floor transition note quality scores were not associated with ICU readmissions or hospital length of stay. CONCLUSIONS: These quality measures were feasible to implement in diverse settings and varied across hospitals. The development of these measures is an important step toward standardized evaluation of the quality of pediatric transitional care.