impact of vitiligo on day to day life of vitiligo patients

INDIAN SOCIAL WORK CONGRESS 2013 (23-25 February, 2013)

University Conference Centre, University of Delhi

Impact of Vitiligo on The Quality of Life (QoL) of Vitiligo Patients

By

Dhirendra PatelMSW,MBA, Mcom,LLB


1. Introduction 2. Meaning3. Characteristices of Vitiligo4. International Position5. Impact 6. DLQI7. Analysis8. Conclusion 9. Future Need


Introduction:– Vitiligo is an acquired disease characterized by skin depigmentation,

due to destruction or malfunction of melanocytes (cells that produce melanin). It is present worldwide, and its prevalence in different countries ranges from less than 0.1% to more than 8% of general population (1% in the United States and in Europe);thus, it can be estimated that approximately 100 million people in the world are affected.

– Despite these data, worldwide awareness and knowledge of vitiligo are often rather inadequate, and several misconceptions prevent a correct approach to this disease:


As some studies suggest, a significant number of patients identifies as possible causes poor medical care, personal behavior, diet, pollution, even “fate” or “evil eye”, and has doubts or wrong ideas about contagiousness;

Moreover, in many countries vitiligo is confused with leprosy. Even general physicians sometimes contribute to misinformation, by telling patients that there is no cure and no treatment is effective and/or classifying vitiligo as a purely aesthetic problem, not worth of research or treatment.

Although the disease does not produce direct physical impairment, it may considerably influence the psychological well-being of the patients.


Meaning:-– Vitiligo is a skin condition in which there is a loss of brown color (pigment) from areas of

skin, resulting in irregular white patches that feel like normal skin.

– Vitiligo is a common, acquired, discoloration of the skin, characterized by well-circumscribed ivory or chalky white macules which are flush to the skin surface.

– Vitiligo is an important skin disease having major impact on quality of life of patients, many of whom feel distressed and stigmatized by their condition. Society greets vitiligo patients in much the same way as it does any one else who appears to be different. They are started at or subjected to whispered comments, antagonism, insult or isolation. The chronic nature of disease, long term treatment, lack of uniform effective therapy and unpredictable course of disease is usually very demoralizing for patients suffering from vitiligo. It is important to recognize and deal with psychological components of this disease to improve their quality of life and to obtain a better treatment response.


Characteristics of Vitiligo:– Occurs in all global regions and ethnic groups with same

frequency– Affects 0.5-1.0% of the population– Affects males & females equally– Approximately 100 million people in the world are affected.– Frequent in family units with 7% incidence– There are various types of vitiligo classified by physicians– There are multiple therapies with marginal success– Can result in severe psychological, social & sexual problems


International:

World Vitiligo Day--- Every Year June 25.

• First World Vitiligo Day (also defined as “Vitiligo Awareness Day” or “Vitiligo Purple Fun day”, from the color chosen as Vitiligo Awareness Color) was observed on June 25, 2011. The choice of June 25 as World Vitiligo Day is a memorial to the popular artist Michael Jackson, who suffered from vitiligo since 1986 until his death, occurred on June 25, 2009.

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Vitiligo Associations:• Italian Vitiligo Society• Korean Vitiligo Association• Spanish Association of Vitiligo Patients• SSPV+ La Societe Suisse du Psoriasis et du Vitiligo• Vitiligo Society UK• Vitiligo Weblap(Hungarian) • AFB Association Francaise du Vitiligo

• Deutscher Vitiligo-Bund e.V. (Germany)

http://www.vitiligo-korea.org/index.htm

http://www.aspavit.com/

http://www.spvg.ch/

http://www.vitiligosociety.eu/index.html

http://www.vitiligo-web.fw.hu/



http://www.afvitiligo.com/

http://www.vitiligo-bund.de/


• Research:National Vitiligo Foundation, Inc. (NVFI)

Support:• Vitiligo Support International (VSI)

• Vitiligo Support and Awareness Foundation (VITSAF)

Children:

• American Vitiligo Research Foundation (AVRF)

http://www.nvfi.org/

http://www.nvfi.org/

http://www.vitiligosupport.org/



http://www.vitsaf.org/

http://www.avrf.org/

http://www.avrf.org/


Forum Discussions (1,719)– California Support Group– 110 membersLatest Activity: Feb 2Trying to get everyone with vitiligo a little closer to

each other... for that special shoulder to lean on =)– Texas Vitiligo Group– 99 membersLatest Activity: yesterday– A place to meet other people living in Texas for support. A place to tell your story, learn

from others and support one another.– Vitiligo Support Group for Washington State– 30 membersLatest Activity: Oct 3, 2012Vitiligo Support Group for Washington State. The

focus for this group is on effective treatment methods/options. Success Stories Welcome!

– Vitiligo in Pennsylvania– 48 membersLatest Activity: Oct 26, 2012When u think there is no one in your area to

talk to with the same problems,thoughts or questions...– London Vitiligo Support Group– 117 membersLatest Activity: Feb 6Support group for people living in Southeast UK.

http://www.vitiligofriends.org/group/californiasupportgroup

http://www.vitiligofriends.org/group/texasvitiligosupportgroup

http://www.vitiligofriends.org/group/VitiligoCures

http://www.vitiligofriends.org/group/vitiligoinpennsylvania

http://www.vitiligofriends.org/group/londonvitiligosupportgroup


– Southwestern Ohio Vitiligo Friends– 41 membersLatest Activity: Sep 1, 2012This is a group for people in

the southwestern Ohio area (Dayton, Cincinnati, Hamilton, etc.) who have vitiligo or a friend/family member with the…

– National Vitiligo Foundation Friends– 63 membersLatest Activity: Dec 24, 2012For people with an interest in

sharing their skills, time, and passion to help the NVF achieve its goals.– Vitiligo Awareness– 206 membersLatest Activity: Jan 29Working to promote broader

awareness of Vitiligo– Parents' Corner– 131 membersLatest Activity: Feb 2Discussion group for parents of

children with Vitiligo

http://www.vitiligofriends.org/group/southwesternohiovitiligofriends

http://www.vitiligofriends.org/group/nationalvitiligofoundationfriends


• International Groups (90)• African Americans with Vitiligo

• 152 membersLatest Activity: Oct 26, 2012

• African Americans with Vitiligo is dedicated to embracing and encouraging everyone suffering with Vitiligo.

• UNIVERSAL VITILIGO NETWORK

• 39 membersLatest Activity: Jan 14GO TO http://universalvitiligo.ning.com/

• M.A.D. (Multiple Autoimmune Diseases)

• 19 membersLatest Activity: Jan 21This is a group for those with multiple autoimmune diseases. Find people who deal with the

same conditions, share treatments and support. Welcome.

• Georgia support group

• 15 membersLatest Activity: Sep 25, 2012

• Canadian Vitiligo Friends

• 9 membersLatest Activity: Jul 10, 2012

• Support group for people living in Canada and locally in Waterloo region, Ontario. A place to tell your story, discuss effective

treatment…


• Delaware Vitiligo Support & Awareness• 23 membersLatest Activity: Feb 13Dover, Delaware Meetings, Workshops, Educate the communities, give support

to others with Vitiligo.• Vitiligo...and then some!• 33 membersLatest Activity: May 21, 2011I know this site is for people w/ Vitiligo, but I made this group so

everyone can learn more about each other beyond the Vitiligo as well. Feel free…• New York/Jersey Vitiligo• 71 membersLatest Activity: Dec 19, 2012New York/Jersey Vitiligo Group• Vitiligo in Louisiana• 9 membersLatest Activity: Jan 22For those of us in the Cajun/Creole state living with vitiligo!• California Support Group• 110 membersLatest Activity: Feb 2Trying to get everyone with vitiligo a little closer to each other... for that special

shoulder to lean on =)• Texas Vitiligo Group• 99 membersLatest Activity: yesterday• A place to meet other people living in Texas for support. A place to tell your story, learn from others and support

one another.• segmental,nonsegmental vitiligo (now &then)• 9 membersLatest Activity: Jan 3• disscussion regarding the topic only!


• Vitiligo Friends Group of Bangladesh• 13 membersLatest Activity: Oct 4, 2012• LGBTQ - Vitiligo Support• 8 membersLatest Activity: Jan 10• This group was created as a safe place for all LGBTQ and our straight allies to come together and

support those of us who have - or love someone…• Support Georgia• 2 membersLatest Activity: Sep 24, 2012• Helping each other with Vitiligo in the state of Georgia. Were all different, but yet were all the

same.• south indian vitiligo friends• 7 membersLatest Activity: Dec 18, 2012• JustFlawed• 11 membersLatest Activity: Nov 10, 2012• Perfectly Flawed is a network for persons dealing with Vitiligo. We are dedicated to focusing on

issues surrounding the disease. The goal is to…• SA• 3 membersLatest Activity: Aug 30, 2012


QoL Issues Physical Disfigurement can cause:– Discrimination– Poor treatment by: peers, teachers, friends, strangers,

employers– Stares & rude comments– Strained social & sexual relationships– Low self-esteem– Feelings of inferiority– Stigmatization– Human Rights Violations


Data Samples Specification:– Gender – Age Range– Disease Duration

1) Gender: (1250)– Male-------716– Female----534

2) Age Range: – Minimum age 18 year– Maximum Age 60 year

3) Disease Duration: – Minimum Disease Duration 1 month– Maximum Disease duration-----36 months


Use of Dermatology Life Quality Index ( DLQI)– A copy of Dermatology Life Quality Index ( DLQI) given

to each participants in the research.

– All participants were given in depth understanding of DLQI.

– Question in DLQI were asked on one to one bases by myself.

– The data collection processes divided in 4 days were the organization was having their pre schedule medical camp.


DLQI Questions Categories

No Question No Related Categories for questions

1 1 and 2 Symptoms and feelings Questions

2 3 and 4 Daily activities Questions

3 5 and 6 Leisure Questions

4 7 Work and School Question

5 8 and 9 Personal relationship Questions

6 10 Treatment Question


DLQI Answers Options and Associated Score

No Scoring Criteria Score/Point

1 Very much 3

2 A lot 2

3 A little 1

4 Not at all 0

5 Not relevant 0

6 Question unanswered 0


Meaning of DLQI Scores

No Point Meaning of Score

1 0-1 no effect at all on patient's life

2 2-5 small effect on patient's life

3 6-10 moderate effect on patient's life

4 11-20 very large effect on patient's life

5 21-30 extremely large effect on patient's life


Inclusion criteria:– Patients from following states and Union

Teritories of India were part of respondent patients list. Daman and Diu, Delhi, Gujarat, Madhya Pradesh, Maharashtra, Rajasthan.

– Adult patients above age of 18 years of either gender.

– Patients with depigmentation due to vitiligo.


Exclusion criteria:– Foreign (= not Indian) patients.– Children (<18).– Patients with depigmentation caused by

chemicals, burns or other diseases.– Question Number 9 of DLQI was not asked as per

the request from the organization.


Data Analyses : 1. Gender wise analysis of Participants 2. Age Group and Gender wise Analyses of Data3. Disease Duration and Male & Female Patients 4. Age and Disease Duration5. Age, Gender and Disease Duration6. Dermatology Life Quality Index (DLQI) Score and Male Vitiligo

Patients only7. Dermatology Life Quality Index (DLQI) Score and Female Vitiligo

Patients only8. Dermatology Life Quality Index (DLQI) Score for Male and Female

Vitiligo Patients9. Disease Duration and Dermatology Life Quality Index (DLQI) Score10. Dermatology Life Quality Index (DLQI) Score and All Vitiligo

Patients/ Respondents


Findings:1) Overall Findings:2) With Effects on Patients Life:3) With Disease Duration:4)With Male and Female:


1) Overall Findings:– Disease Duration and Effect on patients life is directly associated.

– Effect is extremely large during first six month; it means society is not accepting people with vitiligo.

– Even upto 12 month, the acceptance is not that much that’s why around 45% peoples response is that their life is very large to extremely large effect on their life.

– 18% of respondents said that Vitiligo is having extremely large effect on their life.

– 27% of respondents said that Vitiligo is having very large effect on their life.

– 31% of respondents said that VItiligo is having moderate effect on their life.

– 23% of respondents said that vitiligo is having small effect on their life.

– Only 1% respondent said that Vitiligo is not having any effect on their life.

– If we add 18% and 27% means 45% of respondent said that Vitiligo is having very large to extremely large effect on their life.


2) With Effects on Patients Life:– Extremely Large Effect on Patients Life----18% respondents

said this.– Very Large Effect on Patients Life----------27% respondents

said this– Moderate Effect on Patients Life----------31% respondents

said this– Small Effect on Patients Life---------------23% respondents

said this– No Effect on Patients Life------------1% respondent said this


3) With Disease Duration:• 1-6 month Disease Duraiton analyses

– 77% respondent that is 193 vitiligo patients out of 250 respondent belong to 1-6 month disease duration gave 21-30 DLQI Score which means vitiligo is having extremely large effect on their life.

– Remaining 23% that is 57 vitiligo patients out of 250 respondents belong to 1-6 month disease duration gave 11-20 DLQI Score which means vitiligo is having very large effect on patient’s life.

– None of the respondent out of 250 respondents belongs to 1-6 month disease duration score between 6-10 DLQI Score.



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• 7-12 months Disease Duration Analyses– 74% respondent that is 184 vitiligo patients out of 250 respondents

belong to 7-12 month disease duration gave 11-20 DLQI score which means vitilgo is having very large effect on their life.

– 16% respondent that is 40 vitiligo patients out of 250 respondent belong to 7-12 month disease duration gave 21-30 DLQI Score which means vitiligo is having extremely large effect on their life.

– 10% respondent that is 26 vitiligo patients out of 250 respondent belong to 7-12 month disease duration gave 6-10 DLQI Score which means vitiligo is having moderate effect on their life.



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belong to13-18 month disease duration gave 6-10 DLQI score which means vitilgo is having moderate effect on their life.

– 31% respondent that is 78 vitiligo patients out of 250 respondents belong to 13-18 month disease duration gave 11-20 DLQI score which means vitilgo is having very large effect on their life.

– 7% respondent that is 18 vitiligo patients out of 250 respondents belong to 13-18 month disease duration gave 2-5 DLQI Score which means vitiligo is having small effect on their life.





belong to19-24 month disease duration gave 6-10 DLQI score which means vitilgo is having moderate effect on their life.

– 30% respondent that is 76 vitiligo patients out of 250 respondents belong to 19-24 month disease duration gave 2-5 DLQI score which means vitilgo is having small effect on their life.

– 6% respondent that is 16 vitiligo patients out of 250 respondents belong to 19-24 month disease duration gave 11-20 DLQI Score which means vitiligo is having very large effect on their life.



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belong to25-36 month disease duration gave 2-5 DLQI score which means vitilgo is having small effect on their life.

– 19% respondent that is 47 vitiligo patients out of 250 respondents belong to 25-36 month disease duration gave 6-10 DLQI score which means vitilgo is having moderate effect on their life.

– 6% respondent that is 15 vitiligo patients out of 250 respondents belong to 25-36 month disease duration gave 0-1 DLQI Score which means vitiligo is having no effect at all on their life.




4)With Male and Female: • 20% male that is 145 male vitiligo patients gave 21-30 DLQI Score

means vitiligo is having extremely large effect on their life.• 17% female that is 88 female vitiligo patients gave 21-30 DLQI Score

means vitiligo is having extremely large effect on their life.• 27% male that is 190 male vitiligo patients gave 11-20 DLQI Score

means vitiligo is having very large effect on their life.• 27% female that is 145 female vitiligo patients gave 11-20 DLQI

Score means vitiligo is having very large effect on their life.• 29% male that is 209 male vitligo patients gave 6-10 DLQI Score

means vitiligo is having moderate effect on their life.• 33% female that is 176 female vitligo patients gave 6-10 DLQI Score

means vitiligo is having moderate effect on their life.


• 23% male that is 164 male vitiligo patients gave 2-5 DLQI Score means vitiligo is having small effect on their life.

• 22% female that is 118 female vitiligo patients gave 2-5 DLQI Score means vitiligo is having small effect on their life.

• Only 1% male that is 8 male vitiligo patients gave 0-1 DLQI Score means vitiligo is having no effect on their life.

• Only 1% female that 7 female vitiligo patients gave 0-1 DLQI Score means vitiligo is having no effect on their life.

• If we add 27% that is 190 male who gave 11-20 and 20% that is 143 male who gave 21-30, than we can say 47% male that is 333 male vitiligo patients out of 716 gave more than 11 DLQI Score it means 47% or 333 male vitiligo patient out of 716 said that, vitiligo is having large effect on their life.

• If we add 27% that is 145 female who gave 11-20 and 17% that is 88 female who gave 21-30, than we can say 44% female that is 233 female vitiligo patients out of 534 gave more than 11 DLQI Score it means ,44% or 233 female vitiligo patients out of 534 said that, vitiligo is having large effect on their life.


Consequences:Vitiligo is thus an important skin disease having

major impact on the quality of life of patients suffering from vitiligo. Appearance of skin can condition an individual self-image, and any pathological alteration can have psychological consequences.We can divide the consequences or problems faced by vitiligo patients in the following major categories.– Psychological consequences – Financial loss– A child vitiligo patient– family and interpersonal relations of patient


Psychological consequences :

– Vitiligo Patients feel distressed and stigmatized by their condition.– They attract undue attention from the general public sometimes whispered comments,

antagonism and ostrisisam. – The self image of the vitiligo patients drops considerably and may lead to depression. – These patients often develop negative feeling about it, which are reinforced by their

experiences over a number of years. – Most patients of vitiligo report feelings of embarrassment, which can lead to a low self-esteem

and social isolation. – Vitiligo lesions over face may be particularly embarrassing and the frustration of resistant

lesions over exposed part of hands and feet can lead to anger and disillusionment. – Particularly in teenagers, mood disturbances including irritability and depression are common. – Patients with vitiligo are very sensitive to the way other perceives them and they will often

withdraw, because they anticipate being rejected. – Sometimes, strangers and even close friends can make extremely hurtful and humiliating

comments.


Financial loss to a vitiligo patients:– Patients with vitiligo often suffer financial loss because

they often have to take time off work to attend hospital appointments and treatment is ongoing in many cases.

– Vitiligo lesions over exposed sites can adversely affect a person's chances of getting a job at interview and so restrict career choices.

– Sometime Vitiligo Patients use expensive cream, matterial to hide their patches


Family and Interpersonal Relations:

– Vitiligo can also result in problems in interpersonal relations particularly as a result of depression and frustration.

– Patients often feel that their family members are not supportive or lack understanding.

– The chronic nature of disease, long term treatment, lack of uniform effective therapy and unpredictable course of disease is usually very demoralizing for patients suffering from vitiligo. Compliance for regular long term visits; side effects of immunosuppressive therapies, long term risk of photoaging and carcinogenesis with phototherapy are other limitations for vitiligo patients.


A Child Vitiligo Patient:

– Vitiligo beginning in childhood can be associated with significant psychological trauma that may have long lasting effects on the personal self-esteem of these children.

– Children with vitiligo usually avoid sport or restrict such activities.

– Children often lose vital days from school.– Parents of children with vitiligo may have to take time off their

work to regularly accompany them for hospital appointments. – Children with vitiligo deal with the disease well or be devastated

by it, often depending on the attitude of their parents, siblings, relatives, teachers, friends, baby sitters etc.


Conclusions: With the help of this research and its finding I recommend following– India is going towards 21st century but with the findings we can say that Vitiligo

is having a very large to extra large effect on patients life. It means society still not accepting vitiligo patients or people with such cosmetic problems.

– When disease is new, there are more problems face by vitiligo patients.

– Disease Duration is directly associated with the impact on patients life it

– New vitiligo disease extremely large effect on patients life.

– More old vitiligo disease less impact on patients life.

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Recommendations:• The findings of this study present a unique in-depth analysis of

people living with vitiligo and suggest there is a need for further research to explore cultural associations of disfigurement and of adjustment to chronic skin conditions. Furthermore, i suggest that in addition to individual therapeutic interventions there may be a need for community interventions aimed at dispelling myths and raising awareness of sources of support and treatment.

• It is also recommended that vitiligo patients require psychological treatment and counseling with the qualified counselor. In the first six month of the vitiligo disease patients require psychological treatment other than medical treatment.


Thank You

impact of vitiligo on day to day life of vitiligo patients

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