The Experience of Parents of Hospitalized Children Living With Medical Complexity

Abstract

BACKGROUND AND OBJECTIVES Children living with medical complexity (CMC) experience frequent hospital admissions. Validated patient-reported experience measures may inform care improvements in this cohort. Our objectives were to examine the comprehensive inpatient experience of CMC by using a validated patient-reported experience measure and compare the results with all other respondents at 2 academic pediatric hospitals in a western Canadian province. METHODS Parents completed the Child Hospital Consumer Assessment of Healthcare Providers and Systems survey. Surveys were linked with inpatient records, and an accepted case definition was used to extract records pertaining to CMC. Results were reported as percent in “top box,” represented by the most positive answer choice to each measure. Odds of reporting a top box response were calculated while controlling for demographic and clinical features. RESULTS From October 2015 to March 2019, 4197 surveys (1515 CMC; 2682 non-CMC) were collected. Among CMC, the highest-rated measures pertained to being kept informed while in the emergency department, a willingness to recommend the hospital, and parents having a clear understanding of their role in their child’s care. The lowest-rated measures pertained to preventing mistakes and reporting concerns and the quietness of the hospital room at night. Compared with others, parents of CMC reported lower raw results on 20 of the 28 measures. They also reported lower a odds of reporting a top box score on 2 measures and higher odds on 1. CONCLUSIONS Parents of CMC revealed many perceived gaps. These findings can be used to inform strategies to improve care among CMC and policies to support the care of CMC and their families.

How to analyze and link patient experience surveys with administrative data to drive health service improvement -- examples from Alberta, Canada

“…In another report, we showed that women who were hospitalized due to ischaemic heart disease reported a worse experience on over half of the 37 survey questions examined, when compared with their male counterparts [ 39 ]. Similarly, we showed that parents of hospitalized children living with medical complexity reported a poorer experience on over 70% of the survey questions, when compared with parents of other hospitalized children [ 40 ]. Recently, we showed that adults who were hospitalized during the early months of the COVID-19 pandemic reported experiences that were in many aspects, better that those who were hospitalized during the previous year (pre-pandemic) [ 36 ].…”

“…Experience of parents of hospitalized children living with medical complexity (CMC) [40] Examine the comprehensive inpatient experience of CMC, and compare the results with all other respondents at two academic pediatric hospitals.…”