What makes health services usable?: Insights from a qualitative study of caregivers of children with disabilities.

BACKGROUND: The concept of usability from the field of user-centered design addresses the extent to which a system is easy to use, including under extreme conditions. Apart from applications to technologies, however, little attention has been given to understanding what shapes usability of health services more generally. Health service usability may impact the extent to which patients avail themselves of and benefit from those services. PURPOSE: The aim of the study was to develop the concept of usability as it applies to health services, particularly for a high-need, complex patient population. APPROACH: We conducted interviews and focus groups with 66 caregivers of children with disabilities and analyzed data through inductive coding and constant comparison. RESULTS: We find that before health services can be rendered usable for patients with complex health conditions, work is often required to develop trusting relationships with individual providers and to manage time demands and attendant challenges of physical access. In addition, our findings show that actions crucial to receiving benefits from one service often entail difficult tradeoffs either with other services or with other important features in the patient's life-world. Finally, we propose the concept of configuration to capture the complex interdependent arrangement of connections to multiple health services, often for multiple household members, and other life-world factors (e.g., employment, transportation, living conditions). These configurations are dynamic, fragile, and vulnerable to shocks-events that destabilize them, often negatively impacting the relative usability of services and of the entire configuration. Collectively, these findings illustrate health service usability as a relational, situated, emergent property rather than an inherent feature of the service itself. PRACTICE IMPLICATIONS: System-centered design perspectives produce services that are usable for the mythical "ideal" user. To be truly "patient centered," designs must "decenter" the health service and recognize it as one component of the patient's life-world configuration.

How does being part of a pediatric accountable care organization impact health service use for children with disabilities?

OBJECTIVE: To examine the impact of a Medicaid-serving pediatric accountable care organization (ACO) on health service use by children who qualify for Medicaid by virtue of a disability under the "aged, blind, and disabled" (ABD) eligibility criteria. DATA SOURCES/STUDY SETTING: We evaluated a 2013 Ohio policy change that effectively moved ABD Medicaid children into an ACO model of care using Ohio Medicaid administrative claims data for years 2011-2016. STUDY DESIGN: We used a difference-in-difference design to examine changes in patterns of health care service use by ABD-enrolled children before and after enrolling in an ACO compared with ABD-enrolled children enrolled in non-ACO managed care plans. DATA COLLECTION/EXTRACTION METHODS: We identified 17 356 children who resided in 34 of 88 counties as the ACO "intervention" group and 47 026 ABD-enrolled children who resided outside of the ACO region as non-ACO controls. PRINCIPAL FINDINGS: Being part of the ACO increased adolescent preventative service and decreased use of ADHD medications as compared to similar children in non-ACO capitated managed care plans. Relative home health service use decreased for children in the ACO. CONCLUSIONS: Our overall results indicate that being part of an ACO may improve quality in certain areas, such as adolescent well-child visits, though there may be room for improvement in other areas considered important by patients and their families such as home health service.

Satisfaction With Care Coordination for Families of Children With Disabilities.

INTRODUCTION: Children with disabilities have significant health care needs, and receipt of care coordinator services may reduce caregiver burdens. The present study assessed caregivers' experience and satisfaction with care coordination. METHOD: Caregivers of Medicaid-enrolled children with disabilities (n = 2,061) completed a survey (online or by telephone) collecting information on the caregivers' experiences and satisfaction with care coordination using the Family Experiences with Coordination of Care questionnaire. RESULTS: Eighty percent of caregivers with a care coordinator reported receiving help making specialist appointments, and 71% reported help obtaining community services. Caregivers who reported that the care coordinator helped with specialist appointments or was knowledgeable, supportive, and advocating for children had increased odds of satisfaction (odds ratio = 3.46, 95% confidence interval = [1.01, 11.77] and odds ratio = 1.07, 95% confidence interval = [1.03, 1.11], respectively). DISCUSSION: Findings show opportunities for improving care coordination in Medicaid-enrolled children with disabilities and that some specific elements of care coordination may enhance caregiver satisfaction with care.

Design of a randomized clinical trial of a colorectal cancer screening decision aid to promote appropriate screening in community-dwelling older adults.

BACKGROUND: Appropriate colorectal cancer screening in older adults should be aligned with the likelihood of net benefit. In general, patient decision aids improve knowledge and values clarity, but in older adults, they may also help patients identify their individual likelihood of benefit and foster individualized decision-making. We report on the design of a randomized clinical trial to understand the effects of a patient decision aid on appropriate colorectal cancer screening. This report includes a description of the baseline characteristics of participants. METHODS: English-speaking primary care patients aged 70-84 years who were not currently up to date with screening were recruited into a randomized clinical trial comparing a tailored colorectal cancer screening decision aid with an attention control. The intervention group received a decision aid that included a values clarification exercise and individualized decision-making worksheet, while the control group received an educational pamphlet on safe driving behaviors. The primary outcome was appropriate screening at 6 months based on chart review. We used a composite measure to define appropriate screening as screening for participants in good health, a discussion about screening for patients in intermediate health, and no screening for patients in poor health. Health state was objectively determined using patients' Charlson Comorbidity Index score and age. RESULTS: A total of 14 practices in central North Carolina participated as part of a practice-based research network. In total, 424 patients were recruited to participate and completed a baseline visit. Overall, 79% of participants were White and 58% female, with a mean age of 76.8 years. Patient characteristics between groups were similar by age, gender, race, education, insurance coverage, or work status. Overall, 70% had some college education or more, 57% were married, and virtually all had Medicare insurance (90%). The three primary medical conditions among the cohort were a history of diabetes, pneumonia, and cancer (28%, 26%, and 21%, respectively). CONCLUSION: We designed a randomized clinical trial to test a novel use of a patient decision aid to promote appropriate colorectal cancer screening and have recruited a diverse study population that seems similar between the intervention and control groups. The study should be able to determine the ability of a patient decision aid to increase individualized and appropriate colorectal cancer screening.