Table 1.

Description of comparative non-randomized studies.

Study	Design	n	Country, sites	Population	Intervention	Control	Outcome(s) of interest
Arnold 2014 [48]	Cross-sectional Surveyed individuals identify their existing knowledge levels and gaps	104	Canada, three HTCs (from Eastern, Central and Western parts of Canada)	All patients were ≥18 years old 49% mild 13% moderate 29% severe (similar to Canadian distribution)	HTC attendance within the past 12 months	No HTC attendance within the past 12 months	Patient knowledge: Knowledge seeking over the past 12 months
Lazerson 1972 [26]	Before-after Patients compared prior to and after development of a comprehensive care centre	20 before 20 after	United States, NR (presumably, the Children’s Hospital at Stanford)	10 patients were 5–9 years old; 10 patients were 10- 17 years old All severe No inhibitors	The year 1970–1971 is the period during which all children were well established in the comprehensive care program	The year 1968 to 1969 was prior to the establishment of a comprehensive care program	Missed days of school or work: Number of days lost from school or work
Monahan 2011 [27]	Cross-sectional Universal Data Collection (UDC) data	6420	United States, −130 HTCs	All patients were ≤18 years old 50.2% severe 24.3% moderate 25.4% mild 14% reported having inhibitors	Patients who were frequent users (one or more visits per year)	Patients who were infrequent users (less than one visit per year, excluding the first visit) or only had a 1st visit to the HTC	Missed days of school or work: >11 days lost from school or work per year Joint damage or disease (and other measures of functional status): Decreased activity (work, school, recreational, and self-care) per year
Smith 1982 [39]	Before-after Patients compared prior to and after development of a Comprehensive Hemophilia Center	23 before 43 after	Hemophilia Center of Rhode Island, Rhode Island Hospital, Rhode Island, US	49% ≤16 years old 51% >16 years old 70% severe 30% moderately severe	Three years following the initiation of the Comprehensive Hemophilia Centre program	The year preceding the Comprehensive Hemophilia Centre program	Emergency room visits: Number of visits to the emergency room and walk-in clinic
Smith 1984 [27]	Before-after Patients compared prior to and after development of a Comprehensive Hemophilia Center	2112 before 4742 after	United States, 11 federally funded Comprehensive Hemophilia Centers	67% severe 33% mild or moderate	The fifth year following the initiation of the Comprehensive Hemophilia Centre program	The year preceding the Comprehensive Hemophilia Centre program	Missed days of school or work: Number of days lost from school or work Length of in-patient stay: Number of days spent as in-patient
Soucie 2000 [18]	Prospective cohort Hemophilia Surveillance System (HSS) data	2950	United States, HTCs in Colorado, Georgia, Louisiana, Massachusetts, New York, and Oklahoma	46% 0–19 years old 49% 20–59 years old 5% 60–70+ years old 42% severe 24% moderate 31% mild 5% reported having inhibitors 2% reporting having liver disease 25% reported having a positive HIV serostatus; 7% AIDS	Patients receiving care in HTCs	Patients received care primarily from private physicians or haematologists, hospital- and nonhospital-based clinics, only from hospitals or emergency rooms, or care from a variety of other sources	Mortality or survival: Mortality adjusted
Soucie 2001 [38]	Prospective cohort Hemophilia Surveillance System (HSS) data	2546	United States, HTCs in Colorado, Georgia, Louisiana, Massachusetts, New York, and Oklahoma	0–24 years old 41% 25–44 years old 45.4% ≥45 years old 13.7% 47% severe 23% moderate 28% mild 5.3% reported having inhibitors	Patients receiving care in HTCs	Patients received care primarily from private physicians or haematologists, hospital- and nonhospital-based clinics, only from hospitals or emergency rooms, or care from a variety of other sources	Emergency room visits: Number of people with at least one hospitalization over four years adjusted
Soucie 2004 [46]	Cross-sectional Universal Data Collection (UDC) data	4343	United States, −130 HTCs	All patients were ≤19 years old 21% mild 24% moderate 55% severe 10.8% reported having inhibitors	Patients who were frequent users (one or more visits per year)	Infrequent users (less than one visit per year)	Joint damage or disease (and other measures of functional status): Overall joint ROM

HTC, Hemophilia Treatment Center; ROM, range-of-motion.