JAV-Raras: Assessing and Communicating Value of Care with Patient-Centered Outcomes and Time-Driven Activity-Based Costing Method: Analysis of Osteogenesis Imperfecta in Brazilian Public Healthcare System

Author(s)

Gargano L1, Montero GF2, Salvador BC3, Schwartz ID4, Ogata G5, Félix T4, Nita M5, JAV-Raras Study Group P2
1MAPESolutions, São Paulo, SP, Brazil, 2MAPESolutions, São Paulo, PR, Brazil, 3MAPESolutions, Curitiba, PR, Brazil, 4Hospital de Clinicas de Porto Alegre, Porto Alegre, Brazil, 5MAPESolutions, SÃO PAULO, SP, Brazil

Objective: Evolving towards Value-based healthcare (VBHC) requires monitoring patient-centered outcomes (PCO) per currency spent on providing care. Despite those efforts, communication of value is still a challenge. Here we assess and communicate the value of Osteogenesis Imperfecta (OI) patients’ care.

Methods: The “Value of Healthcare Journey for Patients With Rare Diseases Project” (JAV-Raras) is a nationwide cohort study for assessment of PCO and cost of rare diseases. Adults patients with OI under active clinical follow-up in Brazilian medical centers were recruited and quality of life (QoL) was assessed through the Short Form Health Survey 36 (SF-36). Time-Driven Activity-Based Costing (TDABC) method was used to measure all costs incurred in an OI patient's journey according to clinical practice in each medical center. A radar-chart was builded to communicate the value of care with the mean of each SF-36 domain and a mean cost on different axes, equally scaled from 0-100, with better outcomes next to 100. A reciprocal cost method was used to plot costs on that scale.

Results: 18 patients with a range of age 19 - 69 years presenting different degrees of mobility answered the questionnaire. The mean score of SF-36 domains was, Role-emotional: 46.2, Role-physical: 65.2, Social Functioning: 48.5, Physical Functioning: 45.9, Bodily Pain: 34.5, General Health: 47.5, Mental Health: 58.0 and Vitality: 53.6. The mean cost of an OI patients’ one-year journey was USD 2,863.7 ranked as 45.8 (reciprocal cost).

Conclusion: Here we assess the value of care for OI and implement a proper way to communicate those results, with a visual of outcomes and costs that can guide patient-centered decision-making.

Conference/Value in Health Info

2022-05, ISPOR 2022, Washington, DC, USA

Value in Health, Volume 25, Issue 6, S1 (June 2022)

Code

PCR95

Topic

Economic Evaluation, Patient-Centered Research, Study Approaches

Topic Subcategory

Novel & Social Elements of Value, Patient-reported Outcomes & Quality of Life Outcomes, Prospective Observational Studies

Disease

Musculoskeletal Disorders, Rare and Orphan Diseases

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