Value-Based Health Care (VBHC) in Sickle Cell Disease: A Dutch Initiative

Abstract

Background: Value-based health care (VBHC) according to Porter et al. is a novel approach that aims to improve health care by identifying and systematically measuring both medical and patient-centered health care outcome. Thus, including the well-being of the patient as related to physical and mental status, social functioning, and occupational consequences. By applying generic and disease specific outcome measures, health care providers are able to benchmark their center with others in order to compare care strategies and outcome, and to make informed choices with regard to optimization of care, necessary investments and possible cost reductions. Erasmus University Medical Center aims to apply this system in 80% of the disease expert centers in the upcoming three years.SickleCell Disease (SCD) is a chronic hereditary disease characterized by severe anemia, unpredictable episodes of extreme pain, cumulative organ damage and high health care utilization rates. In addition, multiple psychosocial problems influence complexity of health care delivery. Therefore, SCD is an excellent model to explore the effects of VBHC. Our hospital has a large Comprehensive Sickle Cell Care Centre.Aim: To identify ten outcome measures in SCD patients and the validated tools to quantify these measures. This is not possible without definition of baseline patient characteristics of influence on patient outcome.Methods: In six well-prepared sessions, our multidisciplinary team, including both adult and pediatric care takers defined relevant patient outcome measures and most important patient characteristics, in live sessions and surveys in collaboration with patients and parents.Results: Ten outcome measures were identified (Table 1) and discussed with patients and parents. Eight patient characteristics were defined with effect on outcome (Table 2). Eight validated tools to quantify outcome measures were described (Table 3). Specific tools and evaluation modes will be integrated into electronic patient files (Table 3).Conclusions: We believe VBHC is a valuable strategy to optimize patient care and to facilitate informed decision making with regard to health care investments. We have made a first step by identification of patient outcome measures and important baseline patient characteristics according to VBHC methodology. The coming year, outcome will be measured, thus enabling comparisons in the near future with other (inter)national centers.Table 1Overview of most relevant patient outcome measuresMortalityAnxietyVeno-occlusive crises per yearAdmissions per yearPain related to veno-occlusive crisesCaregiver burdenComplicationsQuality of lifeSocial functioningSelf-efficacyTable 2Overview of baseline patient characteristicsGenotypeAgeBorn < or >January 2007*Socio-economic statusHemoglobin levelCommunicationComorbidityMode of treatmentTreatment exclusively in University Medical Center*Neonatal screening for SCD was implemented >January 1st, 2007Table 3Overview of tools to quantify patient outcome measuresTarget groupToolPatient Outcome MeasuresAll agesElectronic patient file· Mortality · Complications · Admissions per year · Veno-occlusive crises per year · 'Door-to-needle-time Emergency Department>18 yrs8-18 yrs0-4 yrsEQ-5D- 5 level version (EQ-5D-5L) Pediatric Quality of Life Inventory (PEDsQL)TNO-AZL Preschool children Quality of Life (TAPQOL)· Quality of life · Social functioning · Anxiety and insecurity<18 yrs>18 yrsHealth Care Related Quality of Life (CAREQOL-7D) Long-term Orientation (LTO)· Caregiver burdenAll agesVisual Analogue Scale (VAS)· Pain related to veno-occlusive crisis>18 yrHospital Anxiety and Depression Scale (HADS)· Anxiety and insecurityAll agesSickle Cell Self-Efficacy Scale (SCSES)· Self-efficacy DisclosuresCnossen:Pfizer: Other: travel funding, Research Funding; Baxter: Other: Travel Funding, Research Funding; Bayer: Other: travel funding, Research Funding; CSL Behring: Other: travel funding, Research Funding; Novo Nordisk: Research Funding; Novartis: Research Funding.