General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey
Abstract
:1. Introduction
- Examine care characteristics of rare disease patients; and
- Examine the importance of rare diseases in general practice by its caseload, i.e., the number of cases in the SGP network, its estimated prevalence in the Belgian general practice population and by comparing the GP-encounter frequency among rare disease patients in the SGP and the Belgian general practice population. We also compared patients’ age in the two populations.
2. Materials and Methods
2.1. Settings and Participants
2.2. Data Collection
2.3. Measurements
2.3.1. The Patient Level
2.3.2. The Level of the Sentinel General Practices
2.4. Analysis
3. Results
3.1. Study Participation of the Sentinel General Practices
3.2. Personal and Care Characteristics of the Sample of Rare Disease Patients
3.3. Caseload by Sentinel General Practices
3.4. General Practitioner Encounter Frequency by Rare Disease Patients Compared to the Total General Practice Population
3.5. Prevalence of Rare Disease Patients in Belgian General Practice
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Variable | Median (IQR) | n/N (%) |
---|---|---|
Patient age (N = 121) | 44 (24–60) | - |
Number of GP–patient encounters in 2015 (N = 118) | 5 (3–10) | - |
Number of care contacts (with other health professionals) about patient in 2015 (N = 112) | 2 (1–5) | - |
Length of patient-GP relation in years (N = 112) | 14 (5–19) | - |
Duration of disease (symptoms) in years (N = 97) | 8 (3–16) | - |
Patient gender: female | - | 71/120 (59.2) |
GP was first caregiver seen for rare disease (symptoms) | - | 41/111 (36.9) |
Diagnosis was confirmed | - | 116/117 (99.2) |
Diagnostic delay (≥1 year between first suspicion and confirmation of diagnosis) | - | 23/94 (24.5) |
GP referred patient to facility where diagnosis was established | - | 43/120 (35.8) |
Reasons(s) why GP referral was unnecessary/unsuccessful | ||
Diagnosis was already known | - | 40/77 (52.0) |
Referral by another caregiver or self-referral | - | 24/77 (31.2) |
GP had first referred to other care facility | - | 6/77 (7.9) |
GP’s medical knowledge of disease is (very) good | - | 34/116 (29.3) |
Usefulness of Orphanet information about the patient’s rare disease is not applicable/no use | - | 103/121 (85.1) |
Rate Ratio for Number of Cases (95% Confidence Intervals (CI)) | Adjusted Rate Ratio for Number of Cases (95% CI) 2,3 | |
---|---|---|
SGP gender composition (N = 110) | ||
<50% men | No significant model obtained | |
≥50% men | ||
SGP age composition (N = 110) | ||
<median | No significant model obtained | |
≥median | ||
Region (N = 111) | ||
Wallonia or Brussels | No significant model obtained | |
Flanders | ||
Population density of SGP municipality (N = 111) | ||
Low or mixed | 1.84 (1.12–3.00) | |
High | ref | |
Use of certified electronic health records (EHR (N = 110) | ||
Yes | 4.05 (1.55–10.60) | 2.85 (1.09–7.45) |
No | ref | Ref |
Practice organization (N = 111) | ||
Group practice | 2.37 (1.50–3.76) | 2.05 (1.29–3.28) |
Solo practice | ref | ref |
Number of reporting (trainee) GPs (N = 110) | ||
>1 | 1.76 (0.97–3.18) | |
1 | ref | |
Number of weekly patient contacts in 2015 (N = 111) | ||
≥median | No significant model obtained | |
<median |
General Practice Population (BCHI) | SGP Rare Disease Population | ||
---|---|---|---|
N = 208,029 | N = 121 1 | ||
Age groups (4) | Mean number of GP encounters (95% CI) 2 | ||
≤24 | 3.3 (3.3–3.4) | 6.0 (2.6–9.4) | |
25–44 | 4.1 (4.1–4.2) | 8.4 (6.0–10.8) | |
45–64 | 5.3 (5.3–5.3) | 7.3 (5.6–9.0) | |
≥65 | 8.9 (8.8–8.9) | 8.2 (5.9–10.5) | |
Total | 5.4 (5.4–5.4) | 7.3 (6.1–8.5) | |
Age groups (4) | Age distribution [Column % (95% CI)] 2 | ||
≤24 | 23.8 (23.6–24.0) | 28.1 (20.3–37.0) | |
25–44 | 24.1 (23.9–24.3) | 23.1 (16.0–31.7) | |
45–64 | 28.5 (28.3–28.7) | 35.5 (27.0–44.8) | |
≥65 | 23.6 (23.4–23.7) | 13.2 (7.8–20.6) | |
Total | 100% | 100% |
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Boffin, N.; Swinnen, E.; Wens, J.; Urbina, M.; Van der Heyden, J.; Van Casteren, V. General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey. Int. J. Environ. Res. Public Health 2018, 15, 1180. https://doi.org/10.3390/ijerph15061180
Boffin N, Swinnen E, Wens J, Urbina M, Van der Heyden J, Van Casteren V. General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey. International Journal of Environmental Research and Public Health. 2018; 15(6):1180. https://doi.org/10.3390/ijerph15061180
Chicago/Turabian StyleBoffin, Nicole, Elfriede Swinnen, Johan Wens, Montse Urbina, Johan Van der Heyden, and Viviane Van Casteren. 2018. "General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey" International Journal of Environmental Research and Public Health 15, no. 6: 1180. https://doi.org/10.3390/ijerph15061180
APA StyleBoffin, N., Swinnen, E., Wens, J., Urbina, M., Van der Heyden, J., & Van Casteren, V. (2018). General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey. International Journal of Environmental Research and Public Health, 15(6), 1180. https://doi.org/10.3390/ijerph15061180