Document Type : Original Article
Authors
- . Mohammad Mahdi Parvizi 1
- . Kamran Bagheri Lankarani 2
- . Farhad Handjani 3
- . Sulmaz Ghahramani 4
- . Zahra Parvizi 5
- . Sara Rousta 6
1 Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran, Health Policy Research Center, Institute of Health, Shiraz University of Medical Sciences, Shiraz, Iran
2 Health Policy Research Center, Institute of Health, Shiraz University of Medical Sciences, Shiraz, Iran
3 Molecular Dermatology Research Center, Shiraz University of Medical Sciences, Shiraz, IranDepartment of Dermatology, School of Medicine, Shiraz University of Medical Sciences, Shiraz, Iran
4 Health Policy Research Center, Institute of Health, Shiraz University of Medical Sciences, Shiraz, Iran,
5 Health Policy Research Center, Institute of Health, Shiraz University of Medical Sciences, Shiraz, Iran, Administration of Laboratories Office, Vice Chancellor of Treatment, Shiraz University of Medical Sciences, Shiraz, Iran
6 Department of Medical-Surgical Nursing, Fatemeh (PBUH) School of Nursing and Midwifery, Shiraz University of Medical Sciences, Shiraz, Iran
Abstract
INTRODUCTION: Health literacy is a set of different skills, including reading, listening, analyzing,
deciding, and applying these skills related to health status. Epidermolysis bullosa (EB) is a rare
hereditary genetic disease which affects several aspects of the life of patients and their families. The
aim of this study was to assess the health literacy of patients with EB in Iran.
MATERIALS AND METHODS: Thirty‑three patients from Iran with EB, aged above 15 years-old,
were enrolled in the study. Iranian Health Literacy Questionnaire, which measures health literacy in
five domains including reading, access, perception, assessment, and decision-making skills, was
used for collecting the data. SPSS analytical software, version 22, was used for statistical analysis.
RESULTS: In total, 19 (57.6%) patients were male and 14 (42.4%) female with an age range of
15-41 years. Nineteen (57.6%) patients had inadequate health literacy in reading skills. One‑third of
patients had enough health literacy in the realm of access, and two‑thirds were excellent in perception.
Overall, there was no significant correlation between the level of health literacy with age (P = 0.92),
sex (P = 0.55), race (P = 0.58), and educational level (P = 0.51) of the patients.
CONCLUSION: The majority of the patients had inadequate health literacy in reading skills while
these patients had acceptable health literacy in perception, assessment, and decision‑making skills.
Improvement of health literacy of these patients should be a priority for health policy makers with the
aim of increasing their quality of life and decreasing their personal and social problems.
Keywords
Heagerty A, et al. The classification of inherited epidermolysis
bullosa (EB): Report of the Third International Consensus Meetingon Diagnosis and Classification of EB. J Am Acad Dermatol
2008;58:931‑50.
2. Eswara U. Dystrophic epidermolysis bullosa in a child. Contemp
Clin Dent 2012;3:90‑2.
3. Fine JD, Bruckner‑Tuderman L, Eady RA, Bauer EA, Bauer JW,
Has C, et al. Inherited epidermolysis bullosa: Updated
recommendations on diagnosis and classification. J Am Acad
Dermatol 2014;70:1103‑26.
4. Fine JD. Inherited epidermolysis bullosa. Orphanet J Rare Dis
2010;5:12.
5. Küttner V, Mack C, Rigbolt KT, Kern JS, Schilling O, Busch H,
et al. Global remodelling of cellular microenvironment due to
loss of collagen VII. Mol Syst Biol 2013;9:657.
6. Kelly‑Mancuso G, Kopelan B, Azizkhan RG, Lucky AW.
Junctional epidermolysis bullosa incidence and survival: 5‑year
experience of the Dystrophic Epidermolysis Bullosa Research
Association of America (DebRA) nurse educator, 2007 to 2011.
Pediatr Dermatol 2014;31:159‑62.
7. Parvizi MM, Namazi MR. Tranilast can be a useful addition to
the limited anti‑epidermolysis bullosa weaponry. Adv Pharm
Bull 2017;7:1‑2.
8. Kho YC, Rhodes LM, Robertson SJ, Su J, Varigos G, Robertson I,
et al. Epidemiology of epidermolysis bullosa in the antipodes:
The Australasian Epidermolysis Bullosa Registry with a focus
on Herlitz junctional epidermolysis bullosa. Arch Dermatol
2010;146:635‑40.
9. McKenna KE, Walsh MY, Bingham EA. Epidermolysis bullosa in
Northern Ireland. Br J Dermatol 1992;127:318‑21.
10. Fine JD, Mellerio JE. Extracutaneous manifestations and
complications of inherited epidermolysis bullosa: Part II. Other
organs. J Am Acad Dermatol 2009;61:387‑402.
11. Montazeri A. Health Literacy for Iranian Adults (HELIA):
Develoment and psychometric properties. Payesh 2014;13:589‑99.
12. Peerson A, Saunders M. Health literacy revisited: What do we
mean and why does it matter? Health Promot Int 2009;24:285‑96.
13. Sihota S, Lennard L. Health literacy: Being able to make the most
of health. London: National Consumer Council; 2004.
14. Haghdoost AA, Rakhshani F, Aarabi M, Montazeri A, Tavousi M,
Solimanian A, et al. Iranian Health Literacy Questionnaire (IHLQ):
An Instrument for measuring health literacy in Iran. Iran Red
Crescent Med J 2015;17:e25831.
15. Tappe MK, Galer‑Unti RA. Health educators’ role in promoting
health literacy and advocacy for the 21st century. J Sch Health
2001;71:477‑82.
16. Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM,
Green D, et al. Functional health literacy and the risk of hospital
admission among Medicare managed care enrollees. Am J Public
Health 2002;92:1278‑83.
17. Baker DW, Parker RM, Williams MV, Clark WS, Nurss J. The
relationship of patient reading ability to self‑reported health and
use of health services. Am J Public Health 1997;87:1027‑30.
18. Elder C, Barber M, Staples M, Osborne RH, Clerehan R,
Buchbinder R. Assessing health literacy: A new domain for
collaboration between language testers and health professionals.
Lang Assess Q 2012;9:205‑24.
19. Sebaratnam DF, Frew JW, Davatchi F, Murrell DF.
Quality‑of‑life measurement in blistering diseases. Dermatol
Clin 2012;30:301‑7, ix.
20. Williams M, Parker RM, Baker DW,Coates W, Nurss J. The
impact of inadequate functional health literacy on patients’
understanding of diagnosis, prescribed medications, and
compliance. Acad Emerg Med 1995;2:386..
21. Paasche‑Orlow MK, Parker RM, Gazmararian JA,
Nielsen‑Bohlman LT, Rudd RR. The prevalence of limited health
literacy. J Gen Intern Med 2005;20:175‑84.
22. von Wagner C, Knight K, Steptoe A, Wardle J. Functional health
literacy and health‑promoting behaviour in a national sample of
British adults. J Epidemiol Community Health 2007;61:1086‑90.
23. Javadzade H, Sharifirad G, Reisi M, Tavassoli E, Rajati F.
Health literacy among adults of Isfahan. Iran J Health Syst Res
2013;9:540‑9.
24. Mollakhalili H, Papi A, Zare‑Farashbandi F, Sharifirad G,
HasanZadeh A. A survey on health literacy of inpatient’s
educational hospitals of Isfahan University of Medical Sciences
in 2012. J Educ Health Promot 2014;3:66.
25. Tehrani Banihashemi S, Amir Khani A, Haghdoust A,
Alavian M, Asghari Fard H, Baradaran H. Health literacy in
five province and relative effective factors. Strides Dev Med
Educ 2007;4:1‑9.
26. Powers BJ, Trinh JV, Bosworth HB. Can this patient read and
understand written health information? JAMA 2010;304:76‑84.
27. Van Wart M. Dynamics of Leadership in Public Service: Theory
and Practice.New Yourk: Routledge; 2014.
28. Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K,
Coates WC, et al. Inadequate functional health literacy among
patients at two public hospitals. JAMA 1995;274:1677‑82.
)