ABSTRACT
INTRODUCTION: In response to the increasing complexity of care for patients with bleeding disorders, we established new clinical teams for our hemophilia treatment center (HTC). AIMS: We undertook a quality improvement project to improve the coordination and communication with our patients by establishing primary assignments of clinical staff to individual patients (primary teams). METHODS: A quality improvement project group was formed that established the goals and assignment of primary teams. Patients were surveyed for their knowledge of their primary teams as well as their ability to schedule and contact their primary providers. As a measure of the effects on clinical staff, a balancing survey was also conducted among providers impacted by the clinical assignment of teams. RESULTS: Our results demonstrate improvements across both coordination and communication as reported by patients. Additionally, the assignment of primary teams was met with high satisfaction and improvement in coordination and communication as reported by the clinical staff members of the HTC. CONCLUSIONS: Initiation of a quality improvement project and the creation of a primary team system were feasible at a large HTC and resulted in improvements in both patient-reported and staff-reported outcomes of coordination and communication of care.
Subject(s)
Blood Coagulation Disorders/psychology , Quality Improvement , Adolescent , Adult , Blood Coagulation Disorders/diagnosis , Humans , Patient-Centered Care , Quality Improvement/organization & administration , Surveys and Questionnaires , Young AdultSubject(s)
Factor VIII/therapeutic use , Hemophilia A/drug therapy , Hemorrhage/prevention & control , Practice Guidelines as Topic/standards , Premedication/methods , Adolescent , Child , Child, Preschool , Female , Hemophilia A/pathology , Humans , Infant , Male , Primary Prevention , Prognosis , Time-to-TreatmentABSTRACT
INTRODUCTION: Patient satisfaction with health care is a key quality metric, associated with adherence and better outcomes. However, satisfaction with US Hemophilia Treatment Centers (HTC) is unknown. AIM: To assess patient satisfaction with US Hemophilia Treatment Centers. METHODS: A nationally uniform survey was conducted using the US HTC Network's regional infrastructure. Satisfaction with multidisciplinary team members, services and care processes was assessed. The anonymous survey, in English and Spanish, was disseminated to 28 289 households. Data were aggregated using 4 standard US Census regions. RESULTS: 5006 individuals (17.7%) who obtained care from 133 (96.4%) of 138 HTCs in 2014 responded. Satisfaction with overall HTC care at 'always' or 'usually' (A/U) levels ranged 94.2%-97.9% regardless of patient gender, age, race, ethnicity, language, diagnosis, severity, region or frequency of HTC contact. A/U satisfaction with HTC haematologist, nurse, social worker or physical therapist, individually, ranged 95.1%-97.3% nationally. A/U satisfaction with three HTC services was 89.5%-96.9% and 94.9%-98.0% for five HTC care processes nationally. Regional satisfaction at A/U levels was at least 87.0%. Nationally, 26.4% and 21.2% rated insurance and language, respectively, as A/U problems in getting needed HTC services. CONCLUSION: Patient satisfaction with US Hemophilia Treatment Center care, multi-disciplinary teams, services and processes was consistently high, documenting the value patients place on HTCs. The successful survey administration demonstrates the capability of the Network's regional infrastructure. Access to the US HTC Network is particularly critical to ongoing health in this new era of novel and gene therapies.
