Satisfaction and Trust
Participants indicated an increased level of general satisfaction with care was associated with a higher level of trust when evaluating care provided by the PCP (r=0.76, p=0.001) or the adult hematologist (r=0.72, p<0.001) (Figure 1A and 1B). Additionally, there were higher levels of general satisfaction associated with increased communication with either adult provider (PCP r=0.78 p<0.001 and hematologist r=0.7 p< 0.001) as well as improved access to care (PCP r=0.65 p=0.003 and hematologist r=0.49 p=0.025). When assessing the relationship between trust and communication, it was noted that higher scores on the communication scale were associated with increased trust in the provider for both the PCP (r=0.67 p=0.004) and hematologist (r=0.84 p<0.001) (Figure 2A and 2B) although no statistically significant association was noted between trust and access to care. Participants were noted to have higher levels of trust in the hematologist when compared to the PCP trending towards statistical significance, mean trust scores 76.5 vs 64.2, (p=0.058). However, there was no difference in their sub-scores in general satisfaction, communication, or access to care when comparing these two groups.
Regarding transition experience, those participants that expressed that they felt extremely prepared for transition were noted to have higher levels of general satisfaction (r=0.6 p=0.028) and trust (r=0.51 p=0.05) with their PCP as well as higher levels of trust in their hematologist (r=0.49 p=0.035). Participants’ residential location impacted their perception of care from their hematologist. Those residing in the Metro and South Bay areas had significantly lower levels of both trust (median 57.96, p=0.004 Metro and median 56.83, p=0.002 South Bay) and general satisfaction (median 2.5, p=0.016 Metro and median 2, p<0.001 South Bay) when compared to the other areas in LA County.
One third of patients that indicated they are connected to a PCP had positive comments regarding their providers knowledge of their SCD and the care they received with that provider. Half of participants that indicated a connection to an adult hematologist had positive feedback including sentiments that their hematologist is a dedicated provider, knowledgeable about SCD, and resourceful in coordinating patients’ medical care. However, about one third of patients were concerned about their hematologists’ lack of knowledge regarding SCD, lack of trust in the medical care they received, and felt that the only service provided was medication refills.