- Email: [email protected]
Quality of life with vitiligo: Comparison of male and female muslim patients in Iran
GENDER MEDICINE/VOL.
3, No. 2, 2 0 0 6
Quality of Life with Vitiligo: Comparison of Male and Female Muslim Patients in Iran Leili B o r i m n e j a d , PhD1; Z o h r e h Parsa Yekta, PhD2; Alireza N i k b a k h t - N a s r a b a d i , PhD2; a n d Alireza Firooz, MD 3 ISchool of Nursing and Midwifery, Iran University of Medical Sciences, Tehran, Iran; 2School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran; and 3Center for Research and Training in Skin Diseases and Leprosy, Tehran University of Medical Sciences, Tehran, Iran
ABSTRACT
B a c k g r o u n d : Vitiligo is a chronic pigmentary disorder of the skin that, although not life threatening, may considerably influence the psychological well-being of patients. It has been suggested that vitiligo patients suffer from low self-esteem, poor body image, and poor quality of life (QOL). Objective: The aim of this study was to explore and compare QOL in male and female patients with vitiligo in Iran. Methods: To obtain the patients' self-assessment of QOL, we used a 17-item multiple-choice questionnaire based on the Dermatology Life Quality Index (DLQI). All statistics used 2-way analysis of variance comparisons with an m-risk of 5%. DLQI scores were assessed using nonparametric comparisons, and qualitative variables were compared with ~2 testing. Categorical regression analyses were also used as an exploratory aim. Results: A total of 77 Muslim patients with vitiligo (53 females, 24 males; mean age, 29.3 years) were included in this survey. The mean (SD) DLQI score of 42.9 (11.4) for females was lower than that of 51.6 (8.8) for males (P = 0.002). Female patients experienced significantly more impairment of general and psychological health (P < 0.003), social relationships (P < 0.02), and sexual activity (P < 0.001) than did male patients. Conclusions: This study indicates the specific areas of patients' lives that are most affected by vitiligo. Gender and location of disease independently affect QOL in Muslim patients in Iran. Women with vitiligo experience greater QOL impairment than their male counterparts. (Gend Med. 2006;3: 124-130) Copyright © 2006 Excerpta Medica, Inc. Key w o r d s : vitiligo, quality of life, Dermatology Life Quality Index. Accepted for publication February 3, 2006. Printed in the USA. Reproduction in whole or part is not permitted.
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L. Borimnejad et al.
INTRODUCTION Vitiligo is a disorder involving a progressive depigmentation of the skin, and although n o t life threatening or physically incapacitating, m a y considerably influence the psychological well-being of patients. 1 It has been suggested that vitiligo patients suffer from low self-esteem, poor b o d y image, and poor quality of life (QOL). Several studies have examined the extent to w h i c h dermatologic illnesses affect psychosocial well-being and vice versa. 2,3 Kent and al-Abadie 4 found high levels of distress in a postal survey of 614 patients with vitiligo compared with the general population. In a survey of 80 Iranian patients, Firooz et al s observed that vitiligo strongly affected self-esteem in 57.5% of respondents. From the patient's perspective, the social and emotional impact of a skin condition m a y be substantial. The sense of being stigmatized or being different from others is a c o m m o n reaction and m a y affect a person's interpersonal and social behavior. Individuals with cutaneous illnesses that are visible to others tend to be perceived as different from those whose appearance is unremarkable. Indeed, because of the social significance of the skin's appearance, 6 the stigmatization experienced b y people with skin diseases m a y be the same as, or even more severe than, that experienced b y people with other b o d y afflictions. 7 Young w o m e n w h o m a y be candidates for arranged marriages are most seriously affected b y cutaneous illnesses. Cultural beliefs also influence perception of self and others, and m a y add to the distress of individuals with skin disorders. For example, w h e n someone is labeled "unclean" or "contagious," people m a y discontinue their relationship with the affected person. A w o m a n w h o develops vitiligo after marriage m a y have marital problems that might possibly end in divorce. 8 Better understanding of the gender-related aspects of living with chronic diseases m a y be helpful for physicians and nurses involved in the long-term care of people with skin disorders. 9 The aim of the present study was to explore and compare various aspects of QOL in male and female patients with vitiligo.
PATIENTS AND METHODS Our s t u d y was c o n d u c t e d from March to N o v e m b e r 2005 at the dermatology outpatient clinics of Tehran University of Medical Sciences in Iran. The institutional ethical c o m m i t t e e approved the study protocol. Patients with vitiligo selected by convenience sampling were included in a self-report survey. Exclusion criteria were age <15 years (at 15 years of age, one can vote or marry in Iran), history of psychosis, or other systemic disorders. All participants were Muslims. Patients were invited to sign an informed consent form, complete a questionnaire, and return it to the dermatologist during the visit. The 17-item multiple-choice questionnaire was based on the Dermatology Life Quality Index (DLQI) 1° and also requested demographic data (age, sex, marital status, education level) and vitiligo characteristics (treatment used, duration and location of disease) (Appendix). Aghaei et a111 have n o t e d the reliability and validity of the Persian version of the DLQI questionnaire for measuring the effects of vitiligo on QOL. Questions were included on general well-being and psychological health4; education; social, interpersonal, and sexual relationships12; and spirituality/ religious practices. 2 Questions about family relationships and spirituality/religious practices were construed to fit the cultural context of our study population. To quantify the different dimensions of QOL, we scored the answers on a 4-point scale (1 = very much, 2 -- a lot, 3 -- a little, 4 -- n o t at all). The m a x i m u m and m i n i m u m scores for the questionnaire were 68 and 17 points, respectively. All data were collected and analyzed using the Statistical Package for Social Sciences, version 11.5 (SPSS Inc., Chicago, Illinois). All statistics used 2-way analysis of variance comparisons with an a-risk of 5%. DLQI scores were assessed using nonparametric comparisons, and qualitative variables were compared with ~2 testing. Categorical regression analyses were also used as an exploratory aim.
RESULTS Demographic and disease-related characteristics of the study sample (53 females, 24 males) are 125
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given in Table I. The overall mean (SD) DLQI score of 42.9 (11.4) for females was lower than that of 51.6 (8.8) for males (P -- 0.002). Female patients with vitiligo experienced significantly more QOL impairment of their general and psychological health (P < 0.003) than did their male counterparts. Other aspects of daily life significantly more affected in females than in males were interpersonal and social relationships (P < 0.02) and sexual activity (P < 0.001). Eighteen of the male patients stated that the disease had no effect on interpersonal and social relationships. Whereas all married m e n denied that the disease had any effect on their sexual activities, 12 of the married w o m e n expressed having problems with these activities. Forty of the m e n and w o m e n did not have problems with getting married. Of the female patients surveyed, 21 had experienced major negative effects on education and job opportunities compared with 4 of the male patients (P < 0.001). Vitiligo had only a m i n o r negative effect on spiritual/religious activities. Some patients reported positive effects on spirituality (6 women, 2 men), others stated that vitiligo inhibited t h e m from performing prayers publicly (11 women, 3 men). Mean scores for responses to the modified DLQI questions b y b o t h male and female pa-
tient groups are shown in Table II. Categorical regression analysis identified gender as the most important predictor of DLQI score (P < 0.001), and location of disease was the second most important factor (P < 0.006).
DISCUSSION QOL research in vitiligo has always focused o n the impact of either disease or different treatm e n t s o n social, psychological, a n d physical well-being. 12,13 Our study focused o n gender differences in QOL a m o n g Iranian Muslim patients with vitiligo. The m o s t i m p o r t a n t finding was that w o m e n with vitiligo experienced significantly lower QOL t h a n did m e n w i t h vitiligo. In a postal survey of 119 patients with vitiligo, O n g e n a e et a114 also f o u n d t h a t w o m e n with vitiligo experienced significantly m o r e QOL i m p a i r m e n t t h a n did m e n w i t h t h e disease. However, o t h e r studies observed n o relationship b e t w e e n DLQI responses and gender. 4,1s In a survey of 78 patients, O n g e n a e et a112 n o t e d that w o m e n were more embarrassed and self-conscious a b o u t t h e disease, m o r e impaired in their daily routine, and m o r e influenced in their choice of clothing t h a n were men. Furthermore, w o m e n m o r e t h a n m e n were similarly b o t h e r e d b y a variety of derma-
Table I. Demographic and disease-related characteristics of male and female patients with vitiligo. Females (n = 53)
Males (n ~ 24)
Total (N = 77)
29 24
14 10
28.2 31.8
Mean age, y
28.2
31.8
29.3
Mean education, y
Characteristic Marital status, no. of patients Married Single
11.7
11.7
11.7
Mean disease duration, y
9.0
8.7
8.9
Location of disease,* no. of patients Visible 1Nonvisible
36 13
17 5
53 18
*Data are missing for 4 female and 2 male patients who did not respond to this question. tThe visible area was defined according to islamic and Iranian cultural traditions, which limit the amount of skin permitted to be displayed in public. Men may leave the head, neck, hands, and forearms uncovered, but women should cover all of the body except the face and hands.
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Table II. Comparison of mean scores* from a Dermatology Life Quality Index-based questionnaire surveying male and female patients with vitiligo. Area Affected
Females (n = 53)
Males (n = 24)
General healtht Embarrassmentt Daily activityt Clothing t Social activityt Leisuret Sports Work/schoolt Sexual relationshipt Partner Treatment Personal relationshipt Family relationship Performance of prayers Spirituality Civil rights Overwhelmed t Marriageability
2.071 2.094 2.773 2.113 2.377 2.641 3.094 2.641 2.490 2.471 2.943 2.981 2.735 1.339 2.723 3.207 1.603 2.867
2.916 2.583 3.625 2.916 3.083 3.500 3.416 3.208 3.166 2.958 3.333 3.625 3.208 1.290 2.925 3.666 2.040 3.125
*Answers were scored on a 4-point scale: 1 = very much, 2 = a lot, 3 = a little, 4 = not at all. tp < 0.05.
to1ogic conditions studied in a primary care setting. 15 We also determined that w o m e n with vitiligo experienced sexual relationship impairment significantly more so t h a n did men. This subject has not been addressed before (as determined b y a literature search of the PubMed database) with the exception of Porter et al, 7 w h o reported that vitiligo had a negative impact on sexual relationships. Involvement of the visible area* readily impaired w o m e n ' s QOL. The psychosocial consequences of disfiguring skin lesions, such as port wine stains, have been reported. 15 W o m e n with facial lesions are especially prone to psychiatric *The visible area was defined according to Islamic and Iranian cultural traditions, which limit the amount of skin permitted to be displayed in public. Men may leave the head, neck, hands, and forearms uncovered, but women should cover all of the body except the face and hands.
morbidity, 16,17 b u t Gupta 18 f o u n d the same psychiatric morbidity with c o m m o n skin diseases in b o t h sexes. We did not observe any significant relationship b e t w e e n the spiritual/religious aspects of life and vitiligo, although other studies have identified a positive relationship b e t w e e n them. 19,20 Owing to the small sample size and the sampling method, the findings of this study m a y n o t be generalizable to all patients. All of the participants in our study were Iranian Muslims, and Ongenae et a121 have n o t e d the effect of culture on QOL. Also, attitude toward vitiligo differs in different cultures. 22 Self-consciousness, t h e reaction of others, researcher p o i n t of view--all these m a y affect the QOL index. Future studies might involve larger numbers of participants recruited from different regions as well as different ethnic groups. A longitudinal study, measuring QOL at various stages of illness, could help to identify changes in needs as well as to further examine the relationships b e t w e e n sociodemographic and clinical factors and QOL.
CONCLUSIONS This s t u d y indicates the specific areas of patients' lives that are most affected b y vitiligo. Gender and location of disease i n d e p e n d e n t l y affect QOL. In this study population, QOL impairment in female patients with vitiligo was greater than that of their male counterparts. Consequently, physicians should pay particular attention to the full impact of vitiligo, especially in w o m e n , and be aware that psychological support is necessary. It is important to recognize and address the psychological c o m p o n e n t s of this disease to improve patients' QOL and to obtain better treatment response.
ACKNOWLEDGMENTS The authors wish to t h a n k Professor A.Y. Finlay for permission to use the DLQI. We are grateful for the assistance of the Center for Research and Training in Skin Diseases and Leprosy, the vice chancellor for research of Tehran University of Medical Sciences, and all the individuals w h o participated in the study. 127
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REFERENCES 1. Heason S, Kent G. Vitiligo: More than a skin disease. Sheffield, UK: University of Sheffield; 2001. Available at: http://www.shef.ac.uk/socst/Shop/ heason.pdf. 2. Thompson AR, Kent G, Smith JA. Living with vitiligo: Dealing with difference. Br J Health Psychol. 2002; 7:213-225. 3. Rumsey N, Clarke A, White P, et al. Altered body image: Appearance-related concerns of people with visible disfigurement, l Adv Nurs. 2004;48:443-453. 4. Kent G, al-Abadie M. Factors affecting responses on Dermatology Life Quality Index items among vitiligo sufferers. Clin Exp Dermatol. 1996;21:330-333. 5. Firooz A, Bouzari N, Fallah N, et al. What patients with vitiligo believe about their condition. Int J Dermatol. 2004;43:811-814. 6. Papadopoulos L, Bor R, Legg C. Coping with the disfiguring effects of vitiligo: A preliminary investigation into the effects of cognitive-behavioural therapy. Br J Med Psychol. 1999;72:385-396. 7. Porter JR, Beuf AH, Lerner AB, Nordlund JJ: The effect of vitiligo on sexual relationships. J Am Acad Dermatol. 1990;22:221-222. 8. Parsad D, Dogra S, Kanwar AJ. Quality of life in patients with vitiligo. Health Qual Life Outcomes. 2003;1:58. 9. Harlow D, Poyner T, Finlay AY, Dykes PJ. Impaired quality of life of adults with skin disease in primary care. Br J Dermatol. 2000;143:979-982. 10. Finlay AY, Khan G. Dermatology Life Quality Index (DLQI): A simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19:210-216. 11. Aghaei S, Sodaifi M, Jafari P, et al. DLQI scores in vitiligo: Reliability and validity of the Persian version. BMC Dermatol. 2004;4:8. 12. Ongenae K, Dierckxsens L, Brochez L, et al. Quality of life and stigmatization profile in a
ohort of vitiligo patients and effect of the use of camouflage. Dermatology. 2005;210:279-285. 13. Tjioe M, Otero ME, van de Kerkhof PC, Gerritsen MJ. Quality of life in vitiligo patients after treatment with long-term narrowband ultraviolet B phototherapy. J Eur Acad Dermatol Venereol. 2005; 19:56-60. 14. Ongenae K, Van Geel N, De Schepper S, Naeyaert JM. Effect of vitiligo on self-reported healthrelated quality of life. Br l Dermatol. 2005;152: 1165-1172. 15. Troilius A, Wrangsjo B, Ljunggren B. Patients with port-wine stains and their psychosocial reactions after photothermolytic treatment. Dermatol Surg. 2000;26:190-196. 16. Parsad D, Pandhi R, Dogra S, et al. Dermatology Life Quality Index score in vitiligo and its impact on the treatment outcome. Br J Dermatol. 2003; 148:373-374. 17. Renzi C, Picardi A, Abeni D, et al. Association of dissatisfaction with care and psychiatric morbidity with poor treatment compliance. Arch DermatoL 2002;138:337-342. 18. Gupta MA. Psychosocial aspects of c o m m o n skin diseases. Can Faro Physician. 2002;48:660-662, 668670. 19. Koenig HG. Religion, spirituality, and medicine: Research findings and implications for clinical practice. South Med J. 2004;97:1194-1200. 20. Seeman TE, Dubin LF, Seeman M. Religiosity/ spirituality and health. A critical review of the evidence for biological pathways. Am Psychol. 2003;58:53-63. 21. Ongenae K, Beelaert L, van Geel N, Naeyaert JM. Psychosocial effects of vitiligo. J Eur Acad Dermatol Venereol. 2006;20:1-8. 22. Kopera D. Historical aspects and definition of vitiligo. Clin Dermatol. 1997;15:841-843. (continued on next page)
Address c o r r e s p o n d e n c e to: Leili Borimnejad, PhD, School of Nursing a n d Midwifery, Iran University of Medical Sciences, Rashid Yasemi Street, V a n a k SQ, Tehran, Iran. E-mail: [email protected]
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Appendix. Dermatology Life Quality Index Questionnaire. r H~SpltQl ~ "
.
.
.
.
.
.
.
.
.
.
Name ....... i
......
.............
........... ~Mar~ status ..... Education level l.
Score D
~ratlo. of viti!igo Sex Location of involved skin
Treatment
The aim of this questionnaire is to measure how much your skin problem has affected your life OVER THE LAST WEEK. Please check one box for each question. 1. How would you describe your general health?
Excellent Good Average Bad
[] [] [] []
2. Over the last week, how embarrassed or self-conscious have you been because of your skin?
Very much A lot A little Not at all
[] [] [] []
3. Over the last week, how much has your skin interfered with going shopping or looking after your home or garden?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
4. Over the last week, how much has your skin influenced the clothes you wear?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
5. Over the last week, how much has your skin affected any social activities?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
6. Over the last week, how much has your skin affected any leisure activities?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
7. Over the last week, how much has your skin made it difficult for you to do any sport?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
8. a. Over the last week, has your skin prevented you from working or studying?
Yes No Not relevant Very much A lot A little
[] [] [] [] [] []
b. If "Yes," over the last week how much has your skin been a problem at work or when studying?
(continued)
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Appendix. (Continued) 9. a. Over the last week, how much has your skin created sexual problems with your partner?
b. Over the last week, how much has your skin created problems affecting your partner?
10. Over the last week, how much of a problem was the treatment of your skin, for example, by making your home messy or by taking up time?
11. Over the last week, how much has your skin created problems with your close friends?
12. Over the last week, how much has your skin created problems with your relatives?
13. Over the last week, how much has your skin problem kept you from performing your prayers?
14. a. Has your skin problem had any effect on your spirituality?
b. How much of an effect?
15. Are your civil rights equivalent to that of a healthy citizen's?
16. Are you overwhelmed by your skin problem?
17. How much has your skin created problems with getting married?
*Adapted with permission)°
130
Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Positive Negative Not at all Not relevant Very much A lot A little Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant
[] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] []
3, No. 2, 2 0 0 6
Quality of Life with Vitiligo: Comparison of Male and Female Muslim Patients in Iran Leili B o r i m n e j a d , PhD1; Z o h r e h Parsa Yekta, PhD2; Alireza N i k b a k h t - N a s r a b a d i , PhD2; a n d Alireza Firooz, MD 3 ISchool of Nursing and Midwifery, Iran University of Medical Sciences, Tehran, Iran; 2School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran; and 3Center for Research and Training in Skin Diseases and Leprosy, Tehran University of Medical Sciences, Tehran, Iran
ABSTRACT
B a c k g r o u n d : Vitiligo is a chronic pigmentary disorder of the skin that, although not life threatening, may considerably influence the psychological well-being of patients. It has been suggested that vitiligo patients suffer from low self-esteem, poor body image, and poor quality of life (QOL). Objective: The aim of this study was to explore and compare QOL in male and female patients with vitiligo in Iran. Methods: To obtain the patients' self-assessment of QOL, we used a 17-item multiple-choice questionnaire based on the Dermatology Life Quality Index (DLQI). All statistics used 2-way analysis of variance comparisons with an m-risk of 5%. DLQI scores were assessed using nonparametric comparisons, and qualitative variables were compared with ~2 testing. Categorical regression analyses were also used as an exploratory aim. Results: A total of 77 Muslim patients with vitiligo (53 females, 24 males; mean age, 29.3 years) were included in this survey. The mean (SD) DLQI score of 42.9 (11.4) for females was lower than that of 51.6 (8.8) for males (P = 0.002). Female patients experienced significantly more impairment of general and psychological health (P < 0.003), social relationships (P < 0.02), and sexual activity (P < 0.001) than did male patients. Conclusions: This study indicates the specific areas of patients' lives that are most affected by vitiligo. Gender and location of disease independently affect QOL in Muslim patients in Iran. Women with vitiligo experience greater QOL impairment than their male counterparts. (Gend Med. 2006;3: 124-130) Copyright © 2006 Excerpta Medica, Inc. Key w o r d s : vitiligo, quality of life, Dermatology Life Quality Index. Accepted for publication February 3, 2006. Printed in the USA. Reproduction in whole or part is not permitted.
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Copyright© 2006 ExcerptaMedica, Inc.
L. Borimnejad et al.
INTRODUCTION Vitiligo is a disorder involving a progressive depigmentation of the skin, and although n o t life threatening or physically incapacitating, m a y considerably influence the psychological well-being of patients. 1 It has been suggested that vitiligo patients suffer from low self-esteem, poor b o d y image, and poor quality of life (QOL). Several studies have examined the extent to w h i c h dermatologic illnesses affect psychosocial well-being and vice versa. 2,3 Kent and al-Abadie 4 found high levels of distress in a postal survey of 614 patients with vitiligo compared with the general population. In a survey of 80 Iranian patients, Firooz et al s observed that vitiligo strongly affected self-esteem in 57.5% of respondents. From the patient's perspective, the social and emotional impact of a skin condition m a y be substantial. The sense of being stigmatized or being different from others is a c o m m o n reaction and m a y affect a person's interpersonal and social behavior. Individuals with cutaneous illnesses that are visible to others tend to be perceived as different from those whose appearance is unremarkable. Indeed, because of the social significance of the skin's appearance, 6 the stigmatization experienced b y people with skin diseases m a y be the same as, or even more severe than, that experienced b y people with other b o d y afflictions. 7 Young w o m e n w h o m a y be candidates for arranged marriages are most seriously affected b y cutaneous illnesses. Cultural beliefs also influence perception of self and others, and m a y add to the distress of individuals with skin disorders. For example, w h e n someone is labeled "unclean" or "contagious," people m a y discontinue their relationship with the affected person. A w o m a n w h o develops vitiligo after marriage m a y have marital problems that might possibly end in divorce. 8 Better understanding of the gender-related aspects of living with chronic diseases m a y be helpful for physicians and nurses involved in the long-term care of people with skin disorders. 9 The aim of the present study was to explore and compare various aspects of QOL in male and female patients with vitiligo.
PATIENTS AND METHODS Our s t u d y was c o n d u c t e d from March to N o v e m b e r 2005 at the dermatology outpatient clinics of Tehran University of Medical Sciences in Iran. The institutional ethical c o m m i t t e e approved the study protocol. Patients with vitiligo selected by convenience sampling were included in a self-report survey. Exclusion criteria were age <15 years (at 15 years of age, one can vote or marry in Iran), history of psychosis, or other systemic disorders. All participants were Muslims. Patients were invited to sign an informed consent form, complete a questionnaire, and return it to the dermatologist during the visit. The 17-item multiple-choice questionnaire was based on the Dermatology Life Quality Index (DLQI) 1° and also requested demographic data (age, sex, marital status, education level) and vitiligo characteristics (treatment used, duration and location of disease) (Appendix). Aghaei et a111 have n o t e d the reliability and validity of the Persian version of the DLQI questionnaire for measuring the effects of vitiligo on QOL. Questions were included on general well-being and psychological health4; education; social, interpersonal, and sexual relationships12; and spirituality/ religious practices. 2 Questions about family relationships and spirituality/religious practices were construed to fit the cultural context of our study population. To quantify the different dimensions of QOL, we scored the answers on a 4-point scale (1 = very much, 2 -- a lot, 3 -- a little, 4 -- n o t at all). The m a x i m u m and m i n i m u m scores for the questionnaire were 68 and 17 points, respectively. All data were collected and analyzed using the Statistical Package for Social Sciences, version 11.5 (SPSS Inc., Chicago, Illinois). All statistics used 2-way analysis of variance comparisons with an a-risk of 5%. DLQI scores were assessed using nonparametric comparisons, and qualitative variables were compared with ~2 testing. Categorical regression analyses were also used as an exploratory aim.
RESULTS Demographic and disease-related characteristics of the study sample (53 females, 24 males) are 125
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given in Table I. The overall mean (SD) DLQI score of 42.9 (11.4) for females was lower than that of 51.6 (8.8) for males (P -- 0.002). Female patients with vitiligo experienced significantly more QOL impairment of their general and psychological health (P < 0.003) than did their male counterparts. Other aspects of daily life significantly more affected in females than in males were interpersonal and social relationships (P < 0.02) and sexual activity (P < 0.001). Eighteen of the male patients stated that the disease had no effect on interpersonal and social relationships. Whereas all married m e n denied that the disease had any effect on their sexual activities, 12 of the married w o m e n expressed having problems with these activities. Forty of the m e n and w o m e n did not have problems with getting married. Of the female patients surveyed, 21 had experienced major negative effects on education and job opportunities compared with 4 of the male patients (P < 0.001). Vitiligo had only a m i n o r negative effect on spiritual/religious activities. Some patients reported positive effects on spirituality (6 women, 2 men), others stated that vitiligo inhibited t h e m from performing prayers publicly (11 women, 3 men). Mean scores for responses to the modified DLQI questions b y b o t h male and female pa-
tient groups are shown in Table II. Categorical regression analysis identified gender as the most important predictor of DLQI score (P < 0.001), and location of disease was the second most important factor (P < 0.006).
DISCUSSION QOL research in vitiligo has always focused o n the impact of either disease or different treatm e n t s o n social, psychological, a n d physical well-being. 12,13 Our study focused o n gender differences in QOL a m o n g Iranian Muslim patients with vitiligo. The m o s t i m p o r t a n t finding was that w o m e n with vitiligo experienced significantly lower QOL t h a n did m e n w i t h vitiligo. In a postal survey of 119 patients with vitiligo, O n g e n a e et a114 also f o u n d t h a t w o m e n with vitiligo experienced significantly m o r e QOL i m p a i r m e n t t h a n did m e n w i t h t h e disease. However, o t h e r studies observed n o relationship b e t w e e n DLQI responses and gender. 4,1s In a survey of 78 patients, O n g e n a e et a112 n o t e d that w o m e n were more embarrassed and self-conscious a b o u t t h e disease, m o r e impaired in their daily routine, and m o r e influenced in their choice of clothing t h a n were men. Furthermore, w o m e n m o r e t h a n m e n were similarly b o t h e r e d b y a variety of derma-
Table I. Demographic and disease-related characteristics of male and female patients with vitiligo. Females (n = 53)
Males (n ~ 24)
Total (N = 77)
29 24
14 10
28.2 31.8
Mean age, y
28.2
31.8
29.3
Mean education, y
Characteristic Marital status, no. of patients Married Single
11.7
11.7
11.7
Mean disease duration, y
9.0
8.7
8.9
Location of disease,* no. of patients Visible 1Nonvisible
36 13
17 5
53 18
*Data are missing for 4 female and 2 male patients who did not respond to this question. tThe visible area was defined according to islamic and Iranian cultural traditions, which limit the amount of skin permitted to be displayed in public. Men may leave the head, neck, hands, and forearms uncovered, but women should cover all of the body except the face and hands.
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Table II. Comparison of mean scores* from a Dermatology Life Quality Index-based questionnaire surveying male and female patients with vitiligo. Area Affected
Females (n = 53)
Males (n = 24)
General healtht Embarrassmentt Daily activityt Clothing t Social activityt Leisuret Sports Work/schoolt Sexual relationshipt Partner Treatment Personal relationshipt Family relationship Performance of prayers Spirituality Civil rights Overwhelmed t Marriageability
2.071 2.094 2.773 2.113 2.377 2.641 3.094 2.641 2.490 2.471 2.943 2.981 2.735 1.339 2.723 3.207 1.603 2.867
2.916 2.583 3.625 2.916 3.083 3.500 3.416 3.208 3.166 2.958 3.333 3.625 3.208 1.290 2.925 3.666 2.040 3.125
*Answers were scored on a 4-point scale: 1 = very much, 2 = a lot, 3 = a little, 4 = not at all. tp < 0.05.
to1ogic conditions studied in a primary care setting. 15 We also determined that w o m e n with vitiligo experienced sexual relationship impairment significantly more so t h a n did men. This subject has not been addressed before (as determined b y a literature search of the PubMed database) with the exception of Porter et al, 7 w h o reported that vitiligo had a negative impact on sexual relationships. Involvement of the visible area* readily impaired w o m e n ' s QOL. The psychosocial consequences of disfiguring skin lesions, such as port wine stains, have been reported. 15 W o m e n with facial lesions are especially prone to psychiatric *The visible area was defined according to Islamic and Iranian cultural traditions, which limit the amount of skin permitted to be displayed in public. Men may leave the head, neck, hands, and forearms uncovered, but women should cover all of the body except the face and hands.
morbidity, 16,17 b u t Gupta 18 f o u n d the same psychiatric morbidity with c o m m o n skin diseases in b o t h sexes. We did not observe any significant relationship b e t w e e n the spiritual/religious aspects of life and vitiligo, although other studies have identified a positive relationship b e t w e e n them. 19,20 Owing to the small sample size and the sampling method, the findings of this study m a y n o t be generalizable to all patients. All of the participants in our study were Iranian Muslims, and Ongenae et a121 have n o t e d the effect of culture on QOL. Also, attitude toward vitiligo differs in different cultures. 22 Self-consciousness, t h e reaction of others, researcher p o i n t of view--all these m a y affect the QOL index. Future studies might involve larger numbers of participants recruited from different regions as well as different ethnic groups. A longitudinal study, measuring QOL at various stages of illness, could help to identify changes in needs as well as to further examine the relationships b e t w e e n sociodemographic and clinical factors and QOL.
CONCLUSIONS This s t u d y indicates the specific areas of patients' lives that are most affected b y vitiligo. Gender and location of disease i n d e p e n d e n t l y affect QOL. In this study population, QOL impairment in female patients with vitiligo was greater than that of their male counterparts. Consequently, physicians should pay particular attention to the full impact of vitiligo, especially in w o m e n , and be aware that psychological support is necessary. It is important to recognize and address the psychological c o m p o n e n t s of this disease to improve patients' QOL and to obtain better treatment response.
ACKNOWLEDGMENTS The authors wish to t h a n k Professor A.Y. Finlay for permission to use the DLQI. We are grateful for the assistance of the Center for Research and Training in Skin Diseases and Leprosy, the vice chancellor for research of Tehran University of Medical Sciences, and all the individuals w h o participated in the study. 127
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REFERENCES 1. Heason S, Kent G. Vitiligo: More than a skin disease. Sheffield, UK: University of Sheffield; 2001. Available at: http://www.shef.ac.uk/socst/Shop/ heason.pdf. 2. Thompson AR, Kent G, Smith JA. Living with vitiligo: Dealing with difference. Br J Health Psychol. 2002; 7:213-225. 3. Rumsey N, Clarke A, White P, et al. Altered body image: Appearance-related concerns of people with visible disfigurement, l Adv Nurs. 2004;48:443-453. 4. Kent G, al-Abadie M. Factors affecting responses on Dermatology Life Quality Index items among vitiligo sufferers. Clin Exp Dermatol. 1996;21:330-333. 5. Firooz A, Bouzari N, Fallah N, et al. What patients with vitiligo believe about their condition. Int J Dermatol. 2004;43:811-814. 6. Papadopoulos L, Bor R, Legg C. Coping with the disfiguring effects of vitiligo: A preliminary investigation into the effects of cognitive-behavioural therapy. Br J Med Psychol. 1999;72:385-396. 7. Porter JR, Beuf AH, Lerner AB, Nordlund JJ: The effect of vitiligo on sexual relationships. J Am Acad Dermatol. 1990;22:221-222. 8. Parsad D, Dogra S, Kanwar AJ. Quality of life in patients with vitiligo. Health Qual Life Outcomes. 2003;1:58. 9. Harlow D, Poyner T, Finlay AY, Dykes PJ. Impaired quality of life of adults with skin disease in primary care. Br J Dermatol. 2000;143:979-982. 10. Finlay AY, Khan G. Dermatology Life Quality Index (DLQI): A simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19:210-216. 11. Aghaei S, Sodaifi M, Jafari P, et al. DLQI scores in vitiligo: Reliability and validity of the Persian version. BMC Dermatol. 2004;4:8. 12. Ongenae K, Dierckxsens L, Brochez L, et al. Quality of life and stigmatization profile in a
ohort of vitiligo patients and effect of the use of camouflage. Dermatology. 2005;210:279-285. 13. Tjioe M, Otero ME, van de Kerkhof PC, Gerritsen MJ. Quality of life in vitiligo patients after treatment with long-term narrowband ultraviolet B phototherapy. J Eur Acad Dermatol Venereol. 2005; 19:56-60. 14. Ongenae K, Van Geel N, De Schepper S, Naeyaert JM. Effect of vitiligo on self-reported healthrelated quality of life. Br l Dermatol. 2005;152: 1165-1172. 15. Troilius A, Wrangsjo B, Ljunggren B. Patients with port-wine stains and their psychosocial reactions after photothermolytic treatment. Dermatol Surg. 2000;26:190-196. 16. Parsad D, Pandhi R, Dogra S, et al. Dermatology Life Quality Index score in vitiligo and its impact on the treatment outcome. Br J Dermatol. 2003; 148:373-374. 17. Renzi C, Picardi A, Abeni D, et al. Association of dissatisfaction with care and psychiatric morbidity with poor treatment compliance. Arch DermatoL 2002;138:337-342. 18. Gupta MA. Psychosocial aspects of c o m m o n skin diseases. Can Faro Physician. 2002;48:660-662, 668670. 19. Koenig HG. Religion, spirituality, and medicine: Research findings and implications for clinical practice. South Med J. 2004;97:1194-1200. 20. Seeman TE, Dubin LF, Seeman M. Religiosity/ spirituality and health. A critical review of the evidence for biological pathways. Am Psychol. 2003;58:53-63. 21. Ongenae K, Beelaert L, van Geel N, Naeyaert JM. Psychosocial effects of vitiligo. J Eur Acad Dermatol Venereol. 2006;20:1-8. 22. Kopera D. Historical aspects and definition of vitiligo. Clin Dermatol. 1997;15:841-843. (continued on next page)
Address c o r r e s p o n d e n c e to: Leili Borimnejad, PhD, School of Nursing a n d Midwifery, Iran University of Medical Sciences, Rashid Yasemi Street, V a n a k SQ, Tehran, Iran. E-mail: [email protected]
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Appendix. Dermatology Life Quality Index Questionnaire. r H~SpltQl ~ "
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Name ....... i
......
.............
........... ~Mar~ status ..... Education level l.
Score D
~ratlo. of viti!igo Sex Location of involved skin
Treatment
The aim of this questionnaire is to measure how much your skin problem has affected your life OVER THE LAST WEEK. Please check one box for each question. 1. How would you describe your general health?
Excellent Good Average Bad
[] [] [] []
2. Over the last week, how embarrassed or self-conscious have you been because of your skin?
Very much A lot A little Not at all
[] [] [] []
3. Over the last week, how much has your skin interfered with going shopping or looking after your home or garden?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
4. Over the last week, how much has your skin influenced the clothes you wear?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
5. Over the last week, how much has your skin affected any social activities?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
6. Over the last week, how much has your skin affected any leisure activities?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
7. Over the last week, how much has your skin made it difficult for you to do any sport?
Very much A lot A little Not at all Not relevant
[] [] [] [] []
8. a. Over the last week, has your skin prevented you from working or studying?
Yes No Not relevant Very much A lot A little
[] [] [] [] [] []
b. If "Yes," over the last week how much has your skin been a problem at work or when studying?
(continued)
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Appendix. (Continued) 9. a. Over the last week, how much has your skin created sexual problems with your partner?
b. Over the last week, how much has your skin created problems affecting your partner?
10. Over the last week, how much of a problem was the treatment of your skin, for example, by making your home messy or by taking up time?
11. Over the last week, how much has your skin created problems with your close friends?
12. Over the last week, how much has your skin created problems with your relatives?
13. Over the last week, how much has your skin problem kept you from performing your prayers?
14. a. Has your skin problem had any effect on your spirituality?
b. How much of an effect?
15. Are your civil rights equivalent to that of a healthy citizen's?
16. Are you overwhelmed by your skin problem?
17. How much has your skin created problems with getting married?
*Adapted with permission)°
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Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Positive Negative Not at all Not relevant Very much A lot A little Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant Very much A lot A little Not at all Not relevant
[] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] [] []