Evaluation of the Quality of Life of Patients with Myasthenia Gravis in Greece
Abstract
:1. Introduction
2. Materials and Methods
2.1. Inclusion Criteria
2.2. Questionnaire
2.3. Translation and Cultural Adaptation of the MG-QOL15r Scale
2.4. Data Curation and Statistical Analysis
3. Results
3.1. Demographic Data and Everyday Life
3.2. Health-Related and Disease-Specific Data
3.3. MG-QOL15r
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Question (Q) | Answer Choices | Responses—N (%) | MG-QOL15rscore [Mean ± SD; Median(IQR)] or Correlation between MG-QOL15r Score and Variable (rs) | p Value |
---|---|---|---|---|
Q20. Biological sex | a. Male b. Female c. I do not wish to answer | 22 (22.20) 76 (76.80) 1 (1) | a: 12.10 ± 7.50 b: 14.10 ± 7.60 | 0.29 |
Q21. Year of birth | Date | Median age (IQR): 48.50 ± 16 | 0.005 | 1 |
Q22. Marital status | a. Never married b. Married c. Divorced/separated d. Widowed e. I do not wish to answer | 30 (30.30) 57 (57.60) 7 (7.10) 5 (5.10) - | a + c + d: 13.40 ± 8.20 b: 13.50 ± 7.40 | 0.92 |
Q23. How many children do you have? | Open response | Median number (IQR): 1 (2) | Have children: 14.10 ± 7.50 No children: 12.50 ± 8.10 | 0.31 |
Q24. How many people do you currently live with? | Open response | Median number (IQR): 2 (1) | Living with others: 14.10 ± 7.50 Living alone: 11.90 ± 8.10 | 0.21 |
Q25. Select your educational level | a. I have not finished primary school b. Primary school c. Secondary school d. High school e. College/Vocational training f. University g. Postgraduate studies h. I do not know/I do not wish to answer | - 2 (2) 2 (2) 29 (29.30) 17 (17.20) 34 (34.30) 15 (15.20) - | b + c + d: 13.90 ± 8.30 e + f + g: 13.20 ± 7.40 | 0.70 |
Q26. In which prefecture are you currently living in? | a. Open response b. I do not wish to answer | Attica: 53 (53.50) Rest of Greece: 38 (38.40) I do not wish to answer: 8 (8.10) | Attica: 13.20 ± 7.60 Rest of Greece: 14.20 ± 8.30 | 0.50 |
Q27. What is your employment status? | a. Self-employed b. Employee c. Working without compensation in the family business d. Retired e. Unemployed f. Student/Housework g. Other h. I do not wish to answer | 16 (16.20) 33 (33.30) 2 (2) 34 (34.30) 10 (10.10) 2 (2) 1 (1) 1 (1) | - | - |
Q28. Which of the following better described your insurance coverage? | a. Public b. Private c. Private and public d. No insurance e. Coverage for indigent people f. I do not wish to answer | 78 (78.80) 4 (4) 13 (13.10) 3 (3) - 1 (1) | Mean rank a: 51.20 b: 91.50 c: 29.70 d: 34.70 | <0.01 |
Q30. Which of the following better describes the economic status of your household? | a. Very severe financial challenges b. Severe financial challenges c. Some financial challenges d. Good financial status e. Very good financial status f. Excellent financial status g. I do not know/I do not wish to answer | 9 (9.10) 24 (24.20) 35 (35.40) 18 (18.20) 10 (10.10) 2 (2) 1 (1) | Mean rank a + b: 65.10 c + d: 44.40 e + f: 29.40 | <0.01 |
Question (Q) | Answer Choices | Responses—N (%) | MG-QOL15r Score [Mean ± SD; Median(IQR)] | p Value |
---|---|---|---|---|
Q1. How would you describe your everyday life with MG? | a. No change in everyday routine b. Mild restriction in everyday routine c. Severe restriction of everyday routine d. Inability to perform everyday routine without help | 19 (19.20) 53 (53.50) 26 (26.30) 1 (1) | a + b: 10.80 ± 6.60 c + d: 20.70 ± 5.50 | <0.01 |
Q2. If you answered “c” or “d” in Q1, who provides help with your everyday routine? | a. Someone who lives with me—household member b. Partner or relative who does not live with me c. Someone who does not live with me and is not compensated for help (e.g., neighbor, friend, colleague) d. Someone who is paid for help by me e. Someone in the context of an organized help program f. Other g. I do not wish to answer a + b a + c | 14/27 3/27 3/27 3/27 1/27 - 1/27 1/27 1/27 | - | - |
Q3. How would you rate the level of interest of others in your everyday life? | a. None b. Minimal c. Moderate d. High e. I do not know/I am not sure f. I do not wish to answer | 12 (12.10) 23 (23.20) 33 (33.30) 23 (23.20) 5 (5.10) 3 (3) | a + b: 12.50 ± 7.00 c + d: 14.10 ± 8.30 | 0.35 |
Q4. How easy is it to obtain help from your neighbor/s if needed? | a. Very difficult b. Difficult c. Possible d. Easy e. Very easy f. I do not wish to answer | 33 (33.30) 29 (29.30) 26 (26.30) 5 (5.10) 4 (4) 2 (2) | a + b: 14.10 ± 7.30 c: 13.10 ± 8.40 d + e: 10.20 ± 9.00 | 0.37 |
Q5. How many people can you count on when facing important personal issues? | a. 0 b. 1–2 c. 3–5 d. 6+ e. I do not know/I do not wish to answer | 2 (2) 45 (45.50) 39 (39.40) 13 (13.10) - | a: 18.00 ± 4.20 b: 14.80 ± 7.90 c: 11.50 ± 6.80 d: 14.00 ± 8.90 | 0.20 |
Q6. In the last year, did you need more emotional support when compared to the past? | a. Yes b. No c. I do not know/I do not wish to answer | 67 (67.70) 31 (31.30) 1 (1) | a: 15.10 ± 7.60 b: 10.10 ± 6.90 | <0.01 |
Q29. Has your MG diagnosis affected your employment status? | a. No b. Decreased hours c. Changed job d. I am not able to work due to MG e. Retired due to disability | 27 (27.30) 14 (14.10) 12 (12.10) 16 (16.20) 22 (22.20) | Mean rank a: 28.50 b: 49.40 c: 41.30 d: 67.40 e: 52.30 | p < 0.01 |
Q31. During the last 12 months, how greatly do you believe that the healthcare costs associated with MG affected your household economic status? | a. No effect b. Minor effect c. Some effect d. Important effect e. Very important effect f. I do not know g. I do not wish to answer | 14 (14.10) 39 (39.40) 24 (24.20) 11 (11.10) 7 (7.10) 1 (1) 3 (3) | a + b: 11.60 ± 7.30 c: 15.20 ± 7.30 d + e: 18.30 ± 7.00 | <0.01 |
Question (Q) | Answer Choices | Responses—N (%) | MG-QOL15r Score [Mean ± SD; Median (IQR)] | p Value |
---|---|---|---|---|
Q7. How would you rate your general health status at the moment? | a. Very bad b. Bad c. Moderate d. Good e. Very good f. I do not know/I do not wish to answer | 5 (5.10) 14 (14.10) 40 (40.40) 32 (32.30) 7 (7.10) 1 (1) | Mean rank a + b: 64.50 c: 58.50 d + e: 33.00 | <0.01 |
Q8. Rate your health on a scale of 0–100 (0: near death, 100: excellent) | 0–100 | Median (IQR): 67 (30) | −0.60 | <0.01 |
Q10. When did you receive your MG diagnosis? (year) | Date | Median time from diagnosis in years (IQR): 13 (13.50) | −0.15 | 0.16 |
Q11. I suffer from | a. Ocular myasthenia b. Generalized myasthenia | 13 (13.10) 86 (86.90) | a: 5.90 ± 5.40 b: 14.60 ± 7.30 | <0.01 |
Q12. If you answered “b” in the previous question, choose the stage of the disease that you are currently at | a. Initial b. Second c. Third d. Terminal e. I do not know f. I do not wish to answer | 7 (7.10) 8 (8.10) 17 (17.20) 5 (5.10) 46 (46.50) 3 (3) | a: 11.70 ± 9.50 b: 11.50 ± 6.60 c: 18.80 ± 5.40 d: 22.80 ± 5.40 | <0.01 |
Q13. Which of the following is/are the most common symptom/s that you experience? | a. Muscle weakness b. Blepharoptosis c. Easy fatigue d. Respiratory distress e. Diplopia f. Other | 75 (75.80) 44 (44.40) 79 (79.80) 34 (34.30) 44 (44.40) 8 (8.10) | - | - |
Q14. Do you have myasthenic crises? | a. Yes b. No c. I do not know/I do not wish to answer | 34 (34.30) 60 (60.60) 5 (5.10) | a: 17.10 ± 6.80 b: 11.20 ± 7.30 | <0.01 |
Q15. If you answered “a” in the previous question, how many episodes did you have in the last 3 months? | a. Number b. I do not know/I do not wish to answer | 0 episodes: 13/34 1 episode: 10/34 2 episodes: 3/34 4 episodes: 2/34 9 episodes: 1/34 15 episodes: 1/34 20 episodes: 1/34 25 episodes: 2/34 I do not know/I do not wish to answer: 1/34 | - | - |
Q16. Do you take any medications for MG? | a. Yes b. No c. I do not wish to answer | 94 (94.90) 5 (5.10) - | - | - |
Q17. If you answered “a” in the previous question, choose the appropriate answer | a. Only pyridostigmine b. Pyridostigmine and cortisol c. Pyridostigmine, cortisol and an immunosuppresant d. Other e. I do not know/I do not wish to answer | 24/94 22/94 36/94 12/94 - | a: 12.00 ± 7.60 b: 11.70 ± 8.00 c: 15.40 ± 6.90 d: 14.70 ± 7.40 No drug: 12.00 ± 12.10 | 0.30 (also no statistically significant difference between those that were receiving and not receiving cortisol) |
Q18. Do you have any other chronic health conditions? (>6 months) | a. Yes b. No c. I do not know/I do not wish to answer | 54 (54.50) 38 (38.40) 7 (7.10) | a: 14.60 ± 7.20 b: 11.50 ± 8.20 | 0.05 |
Q19. Do you have a disability percentage greater than 50% as a result of MG? | a. Yes b. No c. I do not wish to answer | 58 (58.60) 34 (34.30) 7 (7.10) | a. 15.70 ± 6.50 b. 10.10 ± 8.70 | <0.01 |
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Aggelina, A.; Karampli, E.; Mavrovounis, G.; Boutsikos, I.; Pantazopoulos, I.; Kakavas, S.; Pavi, E.; Athanasakis, K. Evaluation of the Quality of Life of Patients with Myasthenia Gravis in Greece. J. Pers. Med. 2023, 13, 1130. https://doi.org/10.3390/jpm13071130
Aggelina A, Karampli E, Mavrovounis G, Boutsikos I, Pantazopoulos I, Kakavas S, Pavi E, Athanasakis K. Evaluation of the Quality of Life of Patients with Myasthenia Gravis in Greece. Journal of Personalized Medicine. 2023; 13(7):1130. https://doi.org/10.3390/jpm13071130
Chicago/Turabian StyleAggelina, Afrodite, Eleftheria Karampli, Georgios Mavrovounis, Ioannis Boutsikos, Ioannis Pantazopoulos, Sotirios Kakavas, Elpida Pavi, and Kostas Athanasakis. 2023. "Evaluation of the Quality of Life of Patients with Myasthenia Gravis in Greece" Journal of Personalized Medicine 13, no. 7: 1130. https://doi.org/10.3390/jpm13071130
APA StyleAggelina, A., Karampli, E., Mavrovounis, G., Boutsikos, I., Pantazopoulos, I., Kakavas, S., Pavi, E., & Athanasakis, K. (2023). Evaluation of the Quality of Life of Patients with Myasthenia Gravis in Greece. Journal of Personalized Medicine, 13(7), 1130. https://doi.org/10.3390/jpm13071130