The Impact of the COVID-19 Pandemic on the Perception of Health and Treatment-Related Issues among Patients with Phenylketonuria in Poland—The Results of a National Online Survey
Abstract
:1. Introduction
2. Materials and Methods
3. Results
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
References
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Characteristics | n/N (%) |
---|---|
Number of patients | 571 |
Patient gender | |
Female | 296 (51.8) |
Male | 275 (48.2) |
Mean age (SD) | 14.77 (12.6) |
Age range | 0.17–53 |
Missing age data | 4 (0.7) |
Number of patients >26 years under parents’ supervision | 42 (7.4) |
Questionnaire filled in by parents | 424 (74.3) |
Questionnaire filled in by patients | 147 (25.7) |
Quarantined | 11 (1.9) |
Self-reported Phe levels before the pandemic | |
As recommended | 363 (63.6) |
Slightly too high | 174 (30.5) |
Far too high | 34 (5.9) |
Self-reported Phe levels during the pandemic lockdown | |
Increased considerably | 27 (4.7) |
Increased slightly | 95 (16.6) |
Remained the same | 302 (52.9) |
Decreased slightly | 75 (13.1) |
Decreased considerably | 18 (3.2) |
No tests in lockdown period | 54 (9.5) |
Distance between household and the clinic | |
In our city | 102 (17.9) |
Less than 50 km | 112 (19.6) |
50–100 km | 128 (22.4) |
More than 100 km | 229 (40.1) |
Mode of travel to clinic | |
Own car | 453 (79.3) |
Rented car | 15 (2.6) |
City transport | 45 (7.9) |
Train or intercity bus | 45 (7.9) |
Several trains or buses | 13 (2.3) |
Travel time to doctor | |
Less than 0.5 h | 105 (18.4) |
0.5–1 h | 153 (26.8) |
1–2 h | 174 (30.5) |
2–3 h | 91 (15.9) |
More than 3 h | 48 (8.4) |
Phone Contact Frequency | ||
---|---|---|
Group 1 (Patients with Regular Phone Contact with PKU Doctor/Dietitian before Pandemic) vs. Group 3 (Patients with Occasional/No Contact) | Group 2 (Patients with Several Phone Contacts with PKU Doctor/Dietitian before Pandemic) vs. Group 3 (Patients with Occasional/No Contact) | |
Were you satisfied with the remote contact? | ||
OR | 22.47 | 8.30 |
95% CI | 12.57–40.14 | 5.34–12.90 |
p | <0.0001 | <0.0001 |
Would you like to have remote contact in the future? | ||
OR | 2.35 | 1.98 |
95% CI | 1.54–3.59 | 1.34–2.93 |
p | <0.0001 | 0.0003 |
Travel Time to the Centre | ||
---|---|---|
How Long Does It Take to Get to Your Doctor? | ||
>3 h to the Doctor vs. All Others | >2 h vs. <1 h | |
OR | 2.17 | 1.77 |
95% CI | 1.19–3.96 | 1.17–2.69 |
p | 0.0057 | 0.0037 |
Self-Reported Phe Levels (Normal vs. Abnormal) | ||||
---|---|---|---|---|
Satisfaction with Remote Contact | Problems in Contacting a Specialist | No Tests during the Pandemic | Positive Opinion on Remote Contact as a Means of Treating PKU | |
OR | 1.56 | 0.59 | 0.42 | 1.68 |
95% CI | 1.10–2.22 | 0.40–0.87 | 0.24–0.76 | 1.10–2.56 |
p | 0.0063 | 0.0034 | 0.0020 | 0.0080 |
Social Interactions (Declarations) | |||||
---|---|---|---|---|---|
Limited Low-Phe Product Availability | Limited Phe-Free Formula Availability | Worse Dietary Compliance | Need to Contact Other Parents/Patients | Problems in Contacting a Specialist | |
OR | 2.00 | 1.87 | 2.03 | 1.97 | 1.55 |
95% CI | 1.42–2.84 | 1.24–2.64 | 1.24–3.35 | 1.22–3.19 | 1.06–0.27 |
p | <0.0001 | <0.0001 | <0.0001 | 0.0028 | 0.0016 |
Social Interactions (Declaration/Report) | |||||
an Increase of Phe Concentrations | Other Than PKU-Related Health Problems | ||||
OR | 1.95 | 3.67 | |||
95% CI | 1.23–3.10 | 1.75–7.69 | |||
p | 0.0023 | 0.0003 |
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Walkowiak, D.; Mikołuć, B.; Mozrzymas, R.; Kałużny, Ł.; Didycz, B.; Korycińska-Chaaban, D.; Patalan, M.; Jagłowska, J.; Chrobot, A.; Starostecka, E.; et al. The Impact of the COVID-19 Pandemic on the Perception of Health and Treatment-Related Issues among Patients with Phenylketonuria in Poland—The Results of a National Online Survey. Int. J. Environ. Res. Public Health 2021, 18, 6399. https://doi.org/10.3390/ijerph18126399
Walkowiak D, Mikołuć B, Mozrzymas R, Kałużny Ł, Didycz B, Korycińska-Chaaban D, Patalan M, Jagłowska J, Chrobot A, Starostecka E, et al. The Impact of the COVID-19 Pandemic on the Perception of Health and Treatment-Related Issues among Patients with Phenylketonuria in Poland—The Results of a National Online Survey. International Journal of Environmental Research and Public Health. 2021; 18(12):6399. https://doi.org/10.3390/ijerph18126399
Chicago/Turabian StyleWalkowiak, Dariusz, Bożena Mikołuć, Renata Mozrzymas, Łukasz Kałużny, Bożena Didycz, Dorota Korycińska-Chaaban, Michał Patalan, Joanna Jagłowska, Agnieszka Chrobot, Ewa Starostecka, and et al. 2021. "The Impact of the COVID-19 Pandemic on the Perception of Health and Treatment-Related Issues among Patients with Phenylketonuria in Poland—The Results of a National Online Survey" International Journal of Environmental Research and Public Health 18, no. 12: 6399. https://doi.org/10.3390/ijerph18126399