Group-based medical mistrust in genomic medicine: Associations with patient and provider perceptions of a specialty clinical encounter

Investigating associations between group-based medical mistrust (GBMM) and perceptions of patient-provider encounters can identify one mechanism through which GBMM may influence health outcomes and serve as a barrier to equitable health care. This study investigated associations between GBMM reported by caregivers of children with a possible genetic condition and caregivers’ and providers’ perceptions of a specialty care appointment discussing diagnostic plans. Caregivers (N = 177) completed the GBMM scale and other measures before their child’s initial specialty clinic visit. After the visit, caregivers reported their perceptions of the visit, including patient centeredness and satisfaction with care. Providers (N = 6) reported their perceptions of patient engagement. Multivariable linear regression showed that higher caregiver GBMM was associated with caregivers’ lower satisfaction with care (P < .01) and more negative perceptions of every domain of patient centeredness (P = .001-.04). Multilevel modeling showed that higher caregiver GBMM was associated with more negative provider perceptions of caregivers’ preparedness to participate in care (P = .03), likely treatment compliance (P = .03), and relevance of questions asked during visit (P = .04). Our findings extend evidence for detrimental effects of GBMM on patient satisfaction to caregivers of pediatric patients and offer new evidence for associations with health care providers’ perceptions of caregivers’ engagement with care.