“Working the system”: The experience of being a primary care patient

Health care providers and system administrators are in the midst of a paradigm shift; moving from paternalism toward an egalitarian approach. For patient centred care to occur, health care providers must prioritize patient needs; provide information regarding treatments while taking patient preferences and expectations into account. While there is literature regarding patient centredness, there is less information from the patient perspective about the experience of being a patient and the influence on behaviour. Using phenomenological research methods and the theory of planned behaviour as a theoretical framework, this study addressed the questions, a) what is the essence of being a primary health care patient, and b) what influence do beliefs, attitudes, and experience have on people’s behaviour as a patient? Nineteen individuals participated. Seven shared elements of being a primary health care patient were identified and contributed to the development of a composite vignette. The patient experience was a socially oriented, governed and reinforced cyclical process. Patients described themselves as actively engaged in their health care – “working the system” to get what they needed, when they needed it. Patients changed their beliefs, attitudes and behaviour as a result of experiences with their physicians, and their perceived success or failure in acquiring the best health care possible. Being a patient was not a single, observable behaviour, but rather a set of contextually dependent strategies patients’ directed at the specific goal of getting the best healthcare possible. The theory of planned behaviour was unsuitable for understanding patients’ beliefs, attitudes and behaviour

Coordinated Health Care Interventions for Childhood Asthma Gaps in Outcomes (CHICAGO) plan

Background: Evidence-based strategies to improve outcomes in minority children with uncontrolled asthma discharged from the emergency department (ED) are needed. Objectives: This multicenter pragmatic clinical trial was designed to compare an ED-only intervention (decision support tool), an ED-only intervention and home visits by community health workers for 6 months (ED-plus-home), and enhanced usual care (UC). Methods: Children aged 5 to 11 years with uncontrolled asthma were enrolled. The change over 6 months in the Patient-Reported Outcomes Measurement Information System Asthma Impact Scale score in children and Satisfaction with Participation in Social Roles score in caregivers were the primary outcomes. The secondary outcomes included guideline-recommended ED discharge care and self-management. Results: Recruitment was significantly lower than expected (373 vs 640 expected). Of the 373 children (64% Black and 31% Latino children), only 63% completed the 6-month follow-up visit. In multivariable analyses that accounted for missing data, the adjusted odds ratios and 98% CIs for differences in Asthma Impact Scores or caregivers’ Satisfaction with Participation in Social Roles scores were not significant. However, guideline-recommended ED discharge care was significantly improved in the intervention groups versus in the UC group, and self-management behaviors were significantly improved in the ED-plus-home group versus in the ED-only and UC groups. Conclusions: The ED-based interventions did not significantly improve the primary clinical outcomes, although the study was likely underpowered. Although guideline-recommended ED discharge care and self-management did improve, their effect on clinical outcomes needs further study