Adherence to Cysteamine Therapy Among Patients Diagnosed with Cystinosis in Saudi Arabia: A Prospective Cohort Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Population
2.2. Data Collection
2.3. Statistical Analysis
3. Results
3.1. Patient Recruitment and Baseline Characteristics
3.2. Evaluating the Level of Adherence: MMAS-8 Responses
3.3. Evaluating the Level of Adherence: MPR Analysis
3.4. Evaluating the Health-Related QoL: SF-36 Responses
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
References
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Mean + SD * | |
---|---|
Age (years) | 19.04 + 6.78 |
Weights (Kg) | 41.3 + 14.09 |
Height (cm) | 137.74 + 18.12 |
N (%) | |
Gender | |
Male | 9 (36) |
Female | 16 (64) |
Cysteamine therapy | |
Oral (IR) | 23 (92) |
Eye drops | 13 (52) |
Patient No. | Item 1 | Item 2 | Item 3 | Item 4 | Item 5 | Item 6 | Item 7 | Item 8 | Overall |
---|---|---|---|---|---|---|---|---|---|
1 | No (1) | No (1) | No (1) | No (1) | Yes (1) | No (1) | No (1) | Never/rarely (1) | 8 |
2 | No (1) | No (1) | No (1) | No (1) | Yes (1) | No (1) | Yes (0) | Never/rarely (1) | 7 |
3 | No (1) | No (1) | No (1) | Yes (0) | Yes (1) | No (1) | No (1) | Never/rarely (1) | 7 |
4 | No (1) | No (1) | No (1) | No (1) | Yes (1) | No (1) | Yes (0) | Never/rarely (1) | 7 |
5 | No (1) | No (1) | No (1) | No (1) | Yes (1) | No (1) | Yes (0) | Never/rarely (1) | 7 |
6 | Yes (0) | Yes (0) | No (1) | No (1) | Yes (1) | No (1) | Yes (0) | Sometimes (0.5) | 4.5 |
7 | Yes (0) | No (1) | Yes (0) | Yes (0) | No (0) | No (1) | No (1) | Sometimes (0.5) | 3.5 |
8 | No (1) | No (1) | No (1) | No (1) | Yes (1) | No (1) | No (1) | Never/rarely (1) | 8 |
9 | No (1) | Yes (0) | No (1) | No (1) | No (0) | No (1) | No (1) | Never/rarely (1) | 6 |
10 | No (1) | Yes (0) | No (1) | No (1) | Yes (1) | No (1) | Yes (0) | Never/rarely (1) | 6 |
11 | No (1) | No (1) | No (1) | No (1) | Yes (1) | No (1) | No (1) | Never/rarely (1) | 8 |
12 | Yes (0) | No (1) | Yes (0) | No (1) | Yes (1) | Yes (0) | Yes (0) | Sometimes (0.5) | 3.5 |
13 | Yes (0) | No (1) | No (1) | No (1) | Yes (1) | Yes (0) | Yes (0) | Sometimes (0.5) | 4.5 |
14 | No (1) | No (1) | Yes (0) | No (1) | Yes (1) | No (1) | No (1) | Sometimes (0.5) | 6.5 |
15 | No (1) | No (1) | No (1) | No (1) | Yes (1) | No (1) | No (1) | Never/rarely (1) | 8 |
MPR | Oral Cysteamine (n = 23 Patients) N (%) | Cysteamine Eye Drops (n = 13 Patients) N (%) |
---|---|---|
Less than 50% | 5 (21.7) | 5 (21.7) |
50 to 75% | 3 (13) | 3 (13) |
76 to 95% | 5 (21.7) | 5 (21.7) |
96 to 100% | 6 (26.1) | 6 (26.1) |
More than 100%
| 4 (17.4) 0 (0) | 4 (17.4) 0 (0) |
Scale | Mean + STD |
---|---|
Physical functioning | 77.73 ± 32.39 |
Limitations due to physical health | 71.59 ± 39.9 |
Limitations due to emotional problems | 80.3 ± 39.39 |
Energy/fatigue | 69.32 ± 24.89 |
Emotional well-being | 82.55 ± 20.6 |
Social functioning | 59.66 ± 24.38 |
Pain | 75 ± 24.64 |
General health | 74.55 + 24 |
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Algasem, R.; Zainy, N.; Alsabban, E.; Almojalli, H.; Alhasan, K.; Ali, T.; Broering, D.; Aleid, H. Adherence to Cysteamine Therapy Among Patients Diagnosed with Cystinosis in Saudi Arabia: A Prospective Cohort Study. Pharmacy 2024, 12, 123. https://doi.org/10.3390/pharmacy12040123
Algasem R, Zainy N, Alsabban E, Almojalli H, Alhasan K, Ali T, Broering D, Aleid H. Adherence to Cysteamine Therapy Among Patients Diagnosed with Cystinosis in Saudi Arabia: A Prospective Cohort Study. Pharmacy. 2024; 12(4):123. https://doi.org/10.3390/pharmacy12040123
Chicago/Turabian StyleAlgasem, Reem, Nedaa Zainy, Essam Alsabban, Hamad Almojalli, Khalid Alhasan, Tariq Ali, Deiter Broering, and Hassan Aleid. 2024. "Adherence to Cysteamine Therapy Among Patients Diagnosed with Cystinosis in Saudi Arabia: A Prospective Cohort Study" Pharmacy 12, no. 4: 123. https://doi.org/10.3390/pharmacy12040123