Table 2 Characteristics of the 115 selected studies
Characteristics | Number of studies (%) | |
|---|---|---|
Study participants | ||
Group 1 (patients, families, caregivers, and patient organizations) | 77 | (67.0) |
Group 2 (specialists, GPs, and other healthcare professionals [HCPs]) | 18 | (15.7) |
Group 3 (others, including the public) | 7 | (6.1) |
Mixed | 13 | (11.3) |
Study locations | ||
Europe | 46 | (40.0) |
North America | 40 | (34.8) |
Asia | 6 | (5.2) |
Oceania | 7 | (6.1) |
South America | 2 | (1.7) |
Mixed | 14 | (12.2) |
Types of RD | ||
Unspecified | 46 | (40.0) |
Endocrine, nutritional, or metabolic diseases (stem code #05) | 20 | (17.4) |
Nervous system diseases (stem code #08) | 11 | (9.6) |
Developmental anomalies (stem code #20) | 10 | (8.7) |
Immune system diseases (stem code #04) | 8 | (7.0) |
Diseases related to blood or blood-forming organs (stem code #03) | 5 | (4.3) |
Mixed | 5 | (4.3) |
Visual system diseases (stem code #09) | 2 | (1.7) |
Circulatory system diseases (stem code #11) | 2 | (1.7) |
Skin diseases (stem code #14) | 2 | (1.7) |
Musculoskeletal system or connective tissue diseases (stem code #15) | 2 | (1.7) |
Genitourinary system diseases (stem code #16) | 1 | (0.9) |
Neoplasms (stem code #02) | 1 | (0.9) |
Study topics | ||
Experience | 74 | (64.3) |
Opinions | 24 | (20.9) |
Knowledge | 9 | (7.8) |
Prevalence | 8 | (7.0) |
Study methodologies | ||
Quantitative | 89 | (77.4) |
Qualitative | 1 | (0.9) |
Mixed | 25 | (21.7) |
Publication year | ||
2016–2020 | 83 | (72.2) |
2011–2015 | 25 | (21.7) |
2002–2010 | 7 | (6.1) |