The Rising Challenge of Poor Health Literacy of Patients with Systemic Sclerosis: Preliminary Data Identify Important Unmet Needs in an Italian Cohort
Abstract
:1. Introduction
2. Materials and Methods
2.1. Data Collection and Procedures
2.2. Instruments
2.3. Statistical Analysis
2.4. Ethical Considerations
3. Results
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Public Involvement Statement
Guidelines and Standards Statement
Conflicts of Interest
References
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Gender (female), n (%) | 56 (98.2) |
Age (years), M (SD) | 59.22 (13.2) |
Age groups, n (%) | |
>70 years | 12 (21.1) |
51–70 years | 30 (52.6) |
31–50 years | 14 (24.6) |
Civil status (married/partnered), n (%) | 42 (73.7) |
Occupation (unemployed/retired), n (%) | 38 (67.9) |
Education (<9 years), n (%) | 20 (35.1) |
Have children, n (%) | 43 (75.4) |
Years from diagnosis, n (%) | |
<10 | 15 (26.3) |
≥10 | 32 (56.1) |
Time at symptom onset (years), M (SD) | 19.0 (10.5) |
HL level, n, % | |
Inadequate (0–8) | 17 (29.8) |
Problematic (9–12) | 19 (33.3) |
Adequate (13–16) | 21 (36.8) |
Total score, mean (SD) | 10.61 (3.75) |
Domain | Items | M (SD) | Do Not Know/ Refusal n (%) | Very Difficult n (%) | Fairly Difficult n (%) | Fairly Easy n (%) | Very Easy n (%) |
---|---|---|---|---|---|---|---|
On a scale from very easy to very difficult, how easy would you say it is to: | |||||||
(1) Find information on treatments of illnesses that concern you? | 2.28 (0.98) | 4 (7) | 5 (8.8) | 23 (40.4) | 21 (36.8) | 4 (7) | |
(2) Find out where to get professional help when you are ill? | 2.58 (0.91) | 2 (3.5) | 2 (3.5) | 22 (38.6) | 23 (40.4) | 8 (14.4) | |
(3) Understand what your doctor says to you? | 3.00 (0.71) | 0 (0) | 2 (3.5) | 8 (14) | 35 (61.4) | 12 (21.1) | |
Health care domain | (4) Understand your doctor’s or pharmacist’s instruction on how to take a prescribed medicine? | 3.19 (0.67) | 0 (0) | 1 (1.8) | 5 (8.8) | 33 (57.9) | 18 (31.6) |
(5) Judge when you may need to get a second opinion from another doctor? | 2.12 (1.18) | 10 (17.5) | 3 (5.3) | 17 (29.8) | 24 (42.1) | 3 (5.3) | |
(6) Use information the doctor gives you to make decisions about your illness? | 2.82 (0.97) | 3 (5.3) | 1 (1.8) | 11 (19.3) | 30 (52.6) | 12 (21.1) | |
(7) Follow instructions from your doctor or pharmacist? | 3.25 (0.71) | 1 (1.8) | 0 (0) | 3 (5.3) | 33 (57.9) | 20 (35.1) | |
(8) Find information on how to manage mental health problems like stress or depression? | 2.09 (1.12) | 8 (14) | 5 (8.8) | 22 (38.6) | 18 (31.6) | 4 (7) | |
(9) Understand health warnings about behavior such as smoking, low physical activity and drinking too much? | 3.30 (1.13) | 4 (7) | 1 (1.8) | 3 (5.3) | 15 (26.3) | 34 (59.6) | |
Disease prevention domain | (10) Understand why you need health screenings? | 3.58 (0.80) | 1 (1.8) | 1 (1.8) | 2 (3.5) | 13 (22.8) | 40 (70.2) |
(11) Judge if the information on health risks in the media is reliable? | 2.21 (1.08) | 6 (10.5) | 7 (12.3) | 16 (28.1) | 25 (43.9) | 3 (5.3) | |
(12) Decide how you can protect yourself from illness based on information in the media? | 2.28 (1.16) | 6 (10.5) | 9 (15.8) | 10 (17.5) | 27 (47.4) | 5 (8.8) | |
(13) Find out about activities that are good for your mental well-being? | 2.60 (1.08) | 5 (8.8) | 2 (3.5) | 13 (22.8) | 28 (49.1) | 9 (15.8) | |
(14) Understand advice on health from family members or friends? | 2.23 (1.17) | 9 (15.8) | 3 (5.3) | 14 (24.6) | 28 (49.1) | 3 (5.3) | |
Disease promotion domain | (15) Understand information in the media on how to get healthier? | 2.44 (1.21) | 7 (12.3) | 3 (5.3) | 15 (26.3) | 22 (38.6) | 10 (17.5) |
(16) Judge which everyday behavior is related to your health? | 3.02 (0.94) | 2 (3.5) | 1 (1.8) | 9 (15.8) | 27 (47.4) | 18 (31.6) |
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El Aoufy, K.; Melis, M.R.; Iovino, P.; Bambi, S.; Lorini, C.; Bonaccorsi, G.; Galetti, I.; Garbagnati, C.; Canziani, P.; Tonolo, S.; et al. The Rising Challenge of Poor Health Literacy of Patients with Systemic Sclerosis: Preliminary Data Identify Important Unmet Needs in an Italian Cohort. Nurs. Rep. 2024, 14, 556-565. https://doi.org/10.3390/nursrep14010043
El Aoufy K, Melis MR, Iovino P, Bambi S, Lorini C, Bonaccorsi G, Galetti I, Garbagnati C, Canziani P, Tonolo S, et al. The Rising Challenge of Poor Health Literacy of Patients with Systemic Sclerosis: Preliminary Data Identify Important Unmet Needs in an Italian Cohort. Nursing Reports. 2024; 14(1):556-565. https://doi.org/10.3390/nursrep14010043
Chicago/Turabian StyleEl Aoufy, Khadija, Maria Ramona Melis, Paolo Iovino, Stefano Bambi, Chiara Lorini, Guglielmo Bonaccorsi, Ilaria Galetti, Carla Garbagnati, Paola Canziani, Silvia Tonolo, and et al. 2024. "The Rising Challenge of Poor Health Literacy of Patients with Systemic Sclerosis: Preliminary Data Identify Important Unmet Needs in an Italian Cohort" Nursing Reports 14, no. 1: 556-565. https://doi.org/10.3390/nursrep14010043
APA StyleEl Aoufy, K., Melis, M. R., Iovino, P., Bambi, S., Lorini, C., Bonaccorsi, G., Galetti, I., Garbagnati, C., Canziani, P., Tonolo, S., Mitola, M., Guiducci, S., Furst, D. E., Matucci-Cerinic, M., Rasero, L., & Bellando-Randone, S. (2024). The Rising Challenge of Poor Health Literacy of Patients with Systemic Sclerosis: Preliminary Data Identify Important Unmet Needs in an Italian Cohort. Nursing Reports, 14(1), 556-565. https://doi.org/10.3390/nursrep14010043