Spanish Speaking Caregiver of Children with Complex Illness Differ from English on Pedsql and Cahps Instruments

Background: Children with medical complexity (CMC) pose a unique challenge to systems because of the range of complexities they present, their need for more comprehensive care, and their greater impact on family caregivers. Innovative systems of care that include social work and other social supports may increase the quality of care for medically complex children. Latinos are the largest and second-fastest growing minority population in the United States. Spanish-speaking-only children with medical complexity (CMC) and their families are more likely to receive ineffective care and least likely of any ethnic group to receive patient/family-centered care, making them one of the most vulnerable groups in healthcare in the U.S.

Purpose: a primary care model expected to offer more effective, coordinated, and comprehensive care for children with medical complexity and their families enrolled children in a randomized controlled trial (RCT). Expected outcomes include increased family satisfaction and increased quality of life for the patient/child and their family. The purpose of analysis was to review the differences between Spanish-speaking-only and English speaking families of children with medical complexity in family satisfaction and quality of life at 12 months.

Methods: Of 280 families enrolled, 152 completed instruments at baseline and 12 months (42% Spanish/58% English). Control group continued in usual care (with their current primary care physician). Intervention group was enrolled in an innovative model of primary care that included social work access as well as other social support services. Expected outcomes included increase in family satisfaction (measured with the CAHPS Child Primary Care instrument and qualitative interview), and increase in family quality of life (measured with the Peds QL Impact on Family Module and qualitative interview). However, for this analysis we did not consider the RCT status of the participants, but grouped them as one cohort and then divided them by language, English or Spanish. Qualitative interviews were conducted at baseline with 20 Spanish-speaking and 20 English-speaking families.

Results: At Baseline, in eight of eight domains (physical functioning, emotional functioning, social functioning, cognitive functioning, communication, worry, daily activities, and family functioning) on the PedsQL, statistically significant differences were seen between groups (English/Spanish) (p<.03). On the CAHPS instrument significant differences were  found (p<.01) in two of six domains: Attention to Child's Growth and Advice on Child Safety. On both instruments, endorsed responses seem to support higher functioning (higher family quality of life) and higher quality of service for Spanish-speaking families. Qualitative analysis is pending.

Conclusions and Implications: The differences between English & Spanish, especially on the PedsQL are remarkable. Spanish speaking tend to endorse more positive responses, even given their more vulnerable status within healthcare settings. These findings indicate a potential  area of further exploration for social scientists. Ongoing analysis of qualitative interviews may elucidate this phenomenon. This research is important to effective assessment of Spanish-speaking populations. Given the vulnerability of this population, under-assessing the impact of a child's illness on the family could result in policy and funding changes that adversely affect Spanish-speaking only families.