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Open Access Kiprono et al., 1:5http://dx.doi.org/10.4172/scientificreports.283 Research ArticleOpen Access Open Access Scientific Reports Scientific Reports Open Access Volume 1 • Issue 5 • 2012 Keywords: Quality o lie; Albinism; Arica Introduction Oculocutaneous albinism comprises a group o heterogeneouspigmentary disorders with an autosomal inheritance. Tere areour types o oculocutaneous albinism with OCA 2 being the mostcommon type in Arica [1]. Phenotypically, the condition presentwith depigmentation o the skin, the hair and the eyes due to reducedlevels- or complete lack o melanin. Te prevalence o albinism inArica is estimated to range between 1 in 15,000 in the East Centralstate o Nigeria [2] to 1 in 1,000 among the onga tribe o Zimbabwe[3]. Luande et al [4] reported a prevalence o 1 in 1,400 in anzania.People with oculocutaneous albinism lack melanin protection andthereore, are susceptible to the harmul eects o the equatorial sun[5]. Moreover, they also ace social discrimination and problems inacceptance and social integration into the black community because o their appearance [1]. Materials and Methods Tis study was conducted at the Regional Dermatology rainingCentre-albino outreach clinics. A total o 149 individuals with albinismwere recruited at 14 outreach clinics. All individuals with albinismolder than 15 years and able to assess their quality o lie participated.Ethical approval was obtained rom the Kilimanjaro Christian MedicalCollege research and ethics committee and an inormed written consentwas obtained rom all the participants. An interviewer administeredquestionnaire was used to collect the data. Te questionnaire consistedo ve sections covering the ollowing aspects:a) Socio-demographic characteristics: A study-specic questionnaireaddressing the socio-demographic aspect.b) Eect on education: Te questionnaire consisted o ve questionsto assess the level o education and social problems experiencedat primary- and secondary schools. Te participants were askedto retrospectively assess the eect o their skin color and eyesighton their perormance and discrimination they had encountered atschool.c) Eect on relationship: Te questionnaire had six questions assessingthe marital status, marital problems associated with albinism,developing and maintaining relationships and relationship withother amily members.d) Eect on work and employment: A total o ve questions assessingthe employment status and urther exploring the challenges acedby albinos who are sel- or ormally employed in their community.e) Dermatology Lie Quality Index (DLQI) Score: Patient-basedmeasurement o quality o lie was obtained by using a validatedNigerian version o the DLQI Questionnaire [6]. Tis questionnairewas designed or use by adults (older than 16 years). DLQIquestionnaire is short and easily understood. All the participantswere requested to score their experience on the questionnaire. Results A total o 149 individuals participated in this study. Teir mean age *Corresponding author: Samson Kimaiyo Kiprono, P.O. Box 8332, Moshi,Tanzania, Tel: +254 722 521 673, Email:
[email protected] Received June 18, 2012; Published August 28, 2012 Citation: Kiprono SK, Joseph LN, Naafs B, ChaulaBM (2012) Quality of Life andPeople with Albinism in Tanzania: More than Only A Loss of Pigment . 1: 283.doi: 10.4172/scientifcreports.2 83 Copyright: © 2012 Kiprono SK, et al. This is an open-access article distributedunder the terms of the Creative Commons Attribution License, which permits un-restricted use, distribution, and reproduction in any medium, provided the srcinalauthor and source are credited. Abstract Background: Occulocutaneous albinism type II (OCA2) is the most common type of albinism in Sub-Saharan Africa. People with albinism have poor vision and they are highly susceptible to skin cancers. The lackof understanding of the cause of albinism as led to numerous superstitions that limit their social acceptance andintegration into their communities. The aim of this study was to assess the quality of life of people with albinism atthe time of albino killings in Tanzania. Methods: This was a cross-sectional study conducted in 14 Regional Dermatology Training Center outreachclinics in Northern Tanzania. Dermatology Life quality Index (DLQI) questionnaire was used to obtain DLQI scores. Asemi-structured questionnaire was used to collect data on education, work, relationships and sun protection. Results: A total of 149 people with albinism were recruited with a mean age of 32.2 years. The mean DLQIscore was 13.1 (95% CI=12.4 - 13.9). Half (49.6%) of the participants were discriminated at school. A total of 138participants were eligible for marriage, however 52.2% were still single. Albinism was reported as the reason for separation or divorce in 50% (9) of those who were separated or divorced. Discrimination during employment wasreported by 46.6% (31) of those who are unemployed. Conclusion: People with albinism have very poor quality of life. They face discrimination and challenges inintegrating into the community. Quality of Life and People with Albinism in Tanzania: More than Only ALoss of Pigment Samson Kimaiyo Kiprono 1 *, Lucumay Nanyori Joseph 2 , Bernard Naafs 1,3 and Baraka Michael Chaula 1 1 Department of Dermatology, Regional Dermatology Training Center, Box 8332 Moshi, Tanzania 2 Kilimanjaro Christian Medical College, Tumaini University, Box Moshi Tanzania 3 Stichting Tropendermatologie, 8485 KN Munnekeburen, The Netherlands Citation: Kiprono SK, Joseph LN, Naafs B, ChaulaBM (2012) Quality of Life and People with Albinism in Tanzania: More than Only A Loss of Pigment . 1: 283. doi: 10.4172/scientifcreports.2 83 Page 2 of 3 Volume 1 • Issue 5 • 2012 was 32.2 years (SD ± 11.91) with male: emale ratio o 1:1.04. Siblingswith albinism was reported by 86 (57.7%) o the respondents. Temean DLQL Score was 13.1(95% CI 12.4-13.9), which reected a very high eect on their lie. Detailed analysis on the eect on quality o lieshowed that, there was a mild eect in 3 (2.0%) respondents, whereasthe eect was moderate in 45 (30.2%) respondents, high in 90 (60.4% )respondents and very high in 11(7.4%) o the respondents. Efect on education Te eect o albinism on education is summarized in able 1. It canbe seen that 83 (55.7%) o the respondents had primary education, 12(8.1%) had not received any ormal education. Albinism was reportedby 89 (59.7%) o the respondents to have had some eect in their schoolperormance. Eect o eye- sight on school perormance was severe in101 (67.8%) o the respondents, whereas there was no eect in only eight o the respondents. Discrimination was not experienced in schoolby 75 (50.3%) o the respondents. Efect on relationship A total o 138 respondents were eligible or marriage as shown onable 2. However, 72 (52.2%) were single, 39(28.3%) were married and18(13.0%) were either separated or divorced. wenty (51.3% o the39 married respondents had problems with their partners because o their skin. Similarly, 9 (50%) o 18 separated or divorced respondentsreported that their skin was the main reason or separation or divorce.A majority (120, 80.5%) o the respondents had no problems developinga relationship, whereas 17(11.4%) had a lot o diculties in developinga relationship because o albinism. One hundred and twenty three(82.5%) o the 149 respondents with albinism had no problems withtheir amily members, but 9 (6%) o the 149 respondents had severeproblems. Fear o harm rom other people was reported by 50 (33.6%)o the 149 respondents, although only 26(17.4%) o the 149 respondentselt that they had no adequate protection. Efect on employment A majority (128, 85.9%) were eligible or employment o which 68(53.1%) were unemployed, whereas 51(39.8%) were sel- employed and9 (7.0%) ormally employed. Tirty one (46.6%) o the 68 unemployedrespondents reported discrimination or employment because o their skin. Hal (30) o the employed had many challenges in theirwork associated with sun exposure and eyesight. Another 6 (10%)experienced discrimination at work place. Efect o sun protective methods Sunscreens and protective clothing were used by the people withalbinism to minimize sun damage. Sunscreens had been used by 146(98%) o the 149 respondents and protective clothing was observed in128 (86%). Itching afer using sunscreens was reported by 25 (17.1%)o the 146 respondents, whereas 21 (14.4%) were uncomortable withtheir appearance afer using sunscreen especially the white color. Sunprotective clothing were reported to interere with work or schoolby 26 (17.4%) o the 149 respondents, whereas 25 (16.8%) o the 149respondents were uncomortable with their protective clothing inpublic. Discussion Albinism is a genetic disorder that aects individuals psychologically.Te result reported here showed that albinism had a very high eect onthe quality o lie o the respondents. Daily activities, perormance atschool and at work were aected by poor eyesight and sun exposure.Te mean DLQI was higher than that reported or psoriasis and vitiligo[7]. Tere is more psychosocial eect o albinism on work, schooland personal relationship than in those conditions, which may be liethreatening.Te mean age o 32.2 years o the respondents in this study washigher than that reported in previous studies in which the lie expectancy o individuals with albinism was shorter and was lower than 30 years[5,8]. An outreach skin care programs or those with albinism has beenin orce or more than a decade. Te programs continuously oer healtheducation, community awareness and early treatment o skin cancers.Eective programs that prevent and treat skin cancers in the rural areasmay increase the lie expectancy. Lund et al [9] reported that peoplewith albinism in the rural low resource settings were highly susceptibleto skin cancer and were expected to have a lower lie expectancy.Formal education presents a challenge to people with albinism. TeEducational perormance o majority (99.95%) was aected by pooreyesight. Te prevalence o albinism in secondary and primary schoolchildren in Zimbabwe was reported to be similar [10]. However, in thisstudy 55.7% o the respondents had received only primary education.Tis study included both old and young generation and most o the Aspect NumberPercentageLevel of education No formal education128.1Primary8355.7Secondary3926.2Higher1510.1 Effect of skin problem on school performance No effect4832.2Slightly3523.5Marked5436.2No Formal education128.1 Stopped school due to albinism associated reasons Yes2919.5No10872.5No formal education128.1 Discrimination in school Not at all7550.3Occasionally 3523.5 Always2718.1No formal education128.1 Effect of eyesight school performance No effect85.4Slightly2818.8Marked10167.8No formal education128.1 Table 1: Education characteristics and associated factors of 149 respondents af-fected by albinism in Tanzania Aspect NumberPercentMarital status Not eligible (Still in school)117.4Married3926.2Single72 48.3Divorced/separated1812.1Widowed9 6.0 Problems in marital relationship due to albinism Not at all1912.8Slightly74.7Marked138.7Not applicable11073.8 Albinism as a reason for separation or divorce Yes96.0No96.0Not applicable13187.9 Problems developing relations because of albinism Not at all12080.5Slightly128.1Marked1711.4 Table 2: effect of albinism on relationship and marriage of 149 respondents withalbinism in Tanzania Citation: Kiprono SK, Joseph LN, Naafs B, ChaulaBM (2012) Quality of Life and People with Albinism in Tanzania: More than Only A Loss of Pigment . 1: 283. doi: 10.4172/scientifcreports.2 83 Page 3 of 3 Volume 1 • Issue 5 • 2012 older people with albinism during their school age attended normalmainstream schools, which lacked special provisions or poor eyesightand with teachers who were not trained to handle such children thereby severely limiting their perormance in school.People with albinism ace social problems both at school and intheir community. Te social problems range rom name calling tobeing treated as an outcast [11]. Almost hal o respondents in thisstudy reported discrimination at school, which was worse among theolder generation. Te increased community awareness and setting- upo special schools similar to that in South Arica where the requency o pupils in mainstream schools was lower than that in the generalpopulation since most o the aected children attend special schools[9] whereby stigma and discrimination were reduced. However, specialschools or people with albinism may be counter-productive i it leadsto isolation and stigmatization. Tereore, maximum eorts should bemade to allow children with albinism to grow and interact with otherchildren.Te cultural belies and the lack o awareness on the genetictransmission o albinism make it dicult or people with albinism toestablish and maintain relationships. In anzania [12] and Malawi [13]there are many superstitions surrounding albinism and the majority in the community ail to realize that, albinism is a genetic disorder.Te albino killings and the ear o harm has an adverse eect on socialinteraction with strangers. In Nigeria people with albinism were oundto be emotionally unstable with less assertive personalities [14] whichmay inuence the type o riends such individuals have.Te ritual killing o individuals with albinism in anzania wasbased on belies that body parts o albinos can be used in ceremoniesto increase material wealth. Although none o such killings occurrednear the region where this study was conducted, 33.5% o people withalbinism were living in constant ear o harm. Te government o anzania publicly condemned such killings and pledged to prosecuteall the individuals or groups who were involved in such ritual killingsand provide adequate protection to those with albinism. Despite all thegovernment eorts 17.4% still eel that they are not adequately protectedbecause the killings still continue afer governmental intervention,which was not reassuring or those with albinism.Te rate o unemployment in anzania is high and people withalbinism are at a higher disadvantage. Tis arises rom people whodo not wish any physical and/or social contact with albinos. I work environment or those who are employed is non- supportive, then itlimits individuals with albinism rom achieving their ull potential [15].In the rural areas most people are armers or work in inormal sectors.Te work is carried out in the open under direct sun or prolongedperiods predisposing albinos to skin cancer. Direct bright sunlightalso worsens their already poor eyesight making it dicult or themto undertake activities such as tailoring, which requires good eyesight.Regular use o sunscreen and protective clothing is importantin minimizing sun damage. However, previous studies reportedthat sunscreens were too expensive or regular use [1,16]. Most o the respondents in this study used sunscreens, which were providedby regular mobile clinics. However, a minority o the respondentscomplained o skin irritation and cosmetic appearance especially thosethat produced a white color. Commercially available sunscreens are tooexpensive to be provided or long- term use and thus unsustainable.Local production o sunscreens, which also takes into account the localenvironment and patient preerence may be a solution. Te sunscreensor use in hot and dry climates should possess properties that are water-and sweat-resistant [17]. Similarly irritation because o the dryingeect o ethanol or oily nature determines their preerence [16]. Teuse o ully covering clothing with a wide brimmed hat in hot anddry environment is uncomortable. Tis is worse or those working ininormal sector under direct sunlight. In anzania, wearing o hat inrural areas or schools is not common. Conclusion People with albinism are aced with enormous challenges under theequatorial sun. Teir quality o lie is severely aected and worsenedby the lack o community awareness, cultural belies and superstitionswithin the society. Poor perormance in the ormal education anda discriminating work environment results in an economically disadvantaged group o individuals that is enguled in a viscous circle o isolation and poverty. Governments and communities should identiy the weak areas in this circle in order to improve the quality o lie o their citizens with albinism. Acknowledgment Dr B. Tank is thanked for correcting the English References 1. Lund PM (2005) Oculocutaneous albinism in southern Africa: population structure, health and genetic care. Ann Hum Biol 32: 168-173.2. Okoro A (1975) Albinism in Nigeria: A clinical and social study. Br J Dermatol 92(5):485-492.3. 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