Care models in the management of haemophilia: a systematic review

Abstract

Background Haemophilia care is commonly provided via multidisciplinary specialized management. To date, there has been no systematic assessment of the impact of haemophilia care delivery models on patient-important outcomes. Objective To conduct a systematic review of published studies assessing the effects of the integrated care model for persons with haemophilia (PWH). Search methods We searched MEDLINE, EMBASE and CINAHL up to April 22, 2015, contacted experts in the field, and reviewed reference lists. Selection criteria Randomized and non-randomized studies of PWH or carriers, focusing mainly on the assessment of care models on delivery. Data collection and analysis Two investigators independently screened title, abstract, and full text of retrieved articles for inclusion. Risk of bias and overall quality of evidence was assessed using Cochrane’s ACROBAT-NRSI tool and GRADE respectively. Relative risks, mean differences, proportions, and means and their variability were calculated as appropriate. Results 27 non-randomized studies were included: eight comparative and 19 non-comparative studies. We found low- to very low-quality evidence that in comparison to other models of care, integrated care may reduce mortality, hospitalizations and emergency room visits, may lead to fewer missed days of school and work, and may increase knowledge seeking. Conclusion Our comprehensive review found low- to very low-quality evidence from a limited number of non-randomized studies assessing the impact of haemophilia care models on some patient-important outcomes. While the available evidence suggests that adoption of the integrated care model may provide benefit to PWH, further high-quality research in the field is needed.

Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data

“…As with many other chronic, rare diseases, haemophilia care is heavily dependent on the availability of costly resources [10] and a structured multi-professional care model [11][12][13][14][15][16] that is not provided homogeneously everywhere. Many patients are not identified and are untreated [9].…”

Optimizing patient flow in a multidisciplinary haemophilia clinic using quality improvement methodology

“…When caring for children with complex medical conditions, a multidisciplinary approach improves patient outcomes . Efficient clinic work‐flow in such settings benefits patients and staff.…”

“…When caring for children with complex medical conditions, a multidisciplinary approach improves patient outcomes. [2][3][4] Efficient clinic work-flow in such settings benefits patients and staff. With a collaborative multidisciplinary team and use of QI science, multidisciplinary clinics can be optimized.…”

“…Multidisciplinary clinics are known to promote accessible and effective comprehensive care, improving outcomes in patients with chronic disease . Haemophilia treatment centres (HTCs) also provide surveillance for disease complications and access to research opportunities during clinic visits.…”

Haemophilia care in Latin America: Assessment and perspectives

“…The objectives of the World Federation of Haemophilia (2015‐2017) have been to develop standards of care that allow the use of available evidence to improve PWH treatment. Recent publications have highlighted the importance of establishing quality indicators in the care of haemophilia, with the purpose of applying them in multiple contexts …”