Costs and impact of disease in adults with sickle cell disease: a pilot study.

ABSTRACT: We assessed the feasibility to estimate illness burden in adults with SCD, investigated factors associated with health-related quality of life (HRQoL), and estimated societal burden. We recruited 32 participants and collected data on fatigue, HRQoL, and work productivity and activity impairment via patient survey. Health care utilization was abstracted for the 12 months before enrollment using medical chart review. Mean age was 36.7 years; 84.4% of participants had hemoglobin SS or Sßthal0 disease, and 81.3% reported chronic pain (experiencing pain on ≥3 days per week in the past 6 months). Mean EQ-5D-3L visual analogue scale score was 63.4 and the index score was 0.79. The mean fatigue score was 57.9. Higher fatigue score was correlated with lower EQ-5D index score (correlation coefficient r = -0.35; P = .049) and Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) scores, including pain (r = -0.47; P = .006), sleep (r = -0.38; P = .03), and emotion scores (r = -0.79; P < .0001). The number of hospitalizations was negatively correlated with HRQoL (all P < .05). Patients who reported chronic pain had significantly lower mean ASCQ-Me sleep scores (48.3 vs 57.1; P = .04) and EQ-5D index scores (0.72 vs 0.89; P = .002) than those without chronic pain. Mean estimated annual per person costs were $51 779 (median, $36 366) for total costs, $7619 ($0) for indirect costs (estimated from lost earnings of participants), and $44 160 ($31 873) for medical costs. Fatigue, SCD complications, hospitalization, and chronic pain negatively affected HRQoL. This sample experienced a high economic burden, largely from outpatient doctor visits.

Explanatory Journeys: Visualising to Understand and Explain Administrative Justice Paths of Redress.

Administrative justice concerns the relationships between individuals and the state. It includes redress and complaints on decisions of a child's education, social care, licensing, planning, environment, housing and homelessness. However, if someone has a complaint or an issue, it is challenging for people to understand different possible redress paths and explore what path is suitable for their situation. Explanatory visualisation has the potential to display these paths of redress in a clear way, such that people can see, understand and explore their options. The visualisation challenge is further complicated because information is spread across many documents, laws, guidance and policies and requires judicial interpretation. Consequently, there is not a single database of paths of redress. In this work we present how we have co-designed a system to visualise administrative justice paths of redress. Simultaneously, we classify, collate and organise the underpinning data, from expert workshops, heuristic evaluation and expert critical reflection. We make four contributions: (i) an application design study of the explanatory visualisation tool (Artemus), (ii) coordinated and co-design approach to aggregating the data, (iii) two in-depth case studies in housing and education demonstrating explanatory paths of redress in administrative law, and (iv) reflections on the expert co-design process and expert data gathering and explanatory visualisation for administrative justice and law.