Quality of Life Measurement for Vitiligo: Is It Important?

Tengku Noorsharifa Dayang Bestari Sinar

, Nelva Karmila Jusuf

Department of Dermatology & Venereology, Universitas Sumatera Utara

Universitas Sumatera Utara Hospital, Medan

Keywords: Vitiligo, Quality of Life, SkinDex-29

Abstract: Introduction: Vitiligo is a chronic skin disease characterized by skin depigmentation caused by melanocytes

destruction. Vitiligo could be considered as a psychosomatic disorder, which means physical and

psychological factors concomitantly are involved in appearance, progression, relapse and remission of

vitiligo. Vitiligo has a remarkable impact on patient’s Quality of Life (QoL). Case: A 20-years-old girl,

initially presented with milky white patches in the back of her neck and right shoulder since 5 years ago.

There was no itch, pain or anesthesia. There was no family history of this disease or other autoimmune

diseases. She suffers a psychological stress caused by her vitiligo and she has a low self-esteem,

embarrassment and anxiety. From dermatological examination, on the colli posterior and acromial dextra

there was depigmentation macules, numular-plaque sized, circrumscribed and leucotrichia in colli posterior.

SkinDex-29 score showed a severe impact in patient’s QoL. The patient treated with tacrolimus 0.1%

ointment and had an improvement both in lesions and QoL. Discussion: Measuring the QoL is important in

the management of vitiligo patient. QoL can be measured with QoL indexes, such as SkinDex-29 that

evaluate three domains: symptoms, psychosocial and emotional status. Establishing a good doctor–patient

relationship to multidisciplinary approach for the patient’s compliance and a better outcome of the

treatment. Conclusion: Vitiligo has devastating psychosocial effects that have great impacts on the patient’s

quality of life. Holistic approach is important to manage vitiligo patient, not only for treated the clinical

aspect but also evaluate the QoL of the patient from time to time.

1 INTRODUCTION

Vitiligo is a chronic skin disease characterized by

skin depigmentation caused by melanocytes

destruction (Bishoi et al, 2018). Prevalence of

vitiligo around 0.1-2% in world population (Iannella

et al, 2016). In 2012-2015, Department of

Dermatology & Venereology, H. Adam Malik

Medan General Hospital prevalence of vitiligo is

8.5%-16.1% (Jusuf, 2017). There is four hypothesis

of vitiligo pathogenesis; (1) autoimunne hypothesis,

(2) neurohumoral hypothesis, (3) autotoxic

hypothesis, (4) chemicals exposure. In neurohumoral

hypothesis, there is role of catecholamines,

neuropeptide Y, and proopiomelanocortin (POMC)

peptides that make melanocytes destructions (Birlea

et al, 2012; Speeckaert et al, 2016).

Treatments for vitiligo are topical, physical,

systemic and surgery. Whereas, the first line topical

treatment is topical corticosteroids or calcineurin

inhibitors. Quality of Life (QoL) has become an

important aspect of patient’s health care and the

impact of disorders on the QoL is important in the

holistic understanding of diseases. Therefore,

vitiligo could be considered as a psychosomatic

disorder, which means physical and psychological

factors concomitantly are involved in appearance,

progression, relapse and remission of vitiligo.

Vitiligo became a large burden on patients’s lives

and many patients suffer from shame and

embarrassment, low self-confidence, and social

isolation (Hedayat et al, 2016).

The World Health Organization (WHO) deﬁned

QoL as individuals’ perceptions of their position in

life in the context of the culture and value systems in

which they live and in relation to their goals,

expectations, standards and concerns (Mitrevska et

al, 2012). Health-related quality of life (HRQL)

reflects patient’s evaluation of the impact of disease

and treatment on their physical, psychological, and

social functioning and wellbeing (Prinsen et al,

1945). Measuring QoL can be done into three

domains that agree with the health deﬁnition of

420

Sinar, T. and Jusuf, N.

Quality of Life Measurement for Vitiligo: Is It Important?.

DOI: 10.5220/0009990704200424

In Proceedings of the 2nd International Conference on Tropical Medicine and Infectious Disease (ICTROMI 2019), pages 420-424

ISBN: 978-989-758-469-5

WHO: physical functioning (symptoms, functional

difﬁculties), psychological state (emotional and

cognitive functions), and social interaction (work,

daily activities, public relations) (Mitrevska et al,

2012).

The well-established Skindex-29 is a three-

dimensional, dermatology-specific HRQL

questionnaire. Twenty-nine items are combined to

form three domains: symptoms, emotions, and

functioning. The domain scores and an overall score

are expressed on a 100-point scale, with higher

scores indicating lower levels of quality of life

(Prinsen et al, 1945). Study of Jusuf et al, at

Department of Dermatology & Venereology of H.

Adam Malik General Hospital Medan, among 30

vitiligo patients were evaluated for QoL using

SkinDex-29. Most of patients’s QoL were in

moderately affected (70%) (Jusuf et al, 2018).

Measuring QoL is important for evaluation of

nonclinical aspects of the disease, discovery of

functional and psychological limitations and in

choosing treatment for initial phase of the disease.

2 CASE

A 20-years-old girl, initially presented with milky

white patches in the back of her neck and right

shoulder since 1 years ago. Five years ago, there was

a white patch in the back of her neck in the size of

coin. The patch became wider and the hair around it

became white too. Around 1 year ago, the patch

appears in her right shoulder. There was no itch,

pain or anesthesia. There was no family history of

disease like this or other autoimmune diseases.

She suffers from a psychological stress due to

often glared by others or avoided for fear of

infection or for disgust by others and even said it’s a

jinx. This make her has a low self-esteem,

embarrassment and anxiety. She got discrimination

from her big family when they gathered and she

always got a negative stigma about her skin

condition.

On general examination, the respiratory rate,

blood pressure and heart rate is normal. On

dermatologic examination on the colli posterior and

acromial dextra there was depigmentation macules,

5 cm x 4 cm x 3cm in size, circrumscribed (Fig.1).

There was leucotrichia in colli posterior. There is no

disability of sensibility and no nerves enlargement.

For her low self-esteem problem, we use SkinDex-

29 questionnaires for measure her QoL and got total

score is 110 with linear score is 75.86 which is have

severe impact in patient’s QoL.

Patient different diagnosed with vitiligo,

hypopigmentation post inflammation, leprosy.

Patient was treated with clobetasol propionate 0.05%

cream twice daily. We educated patient about the

disease and give encouragement to her

psychological stress. We also suggested her to avoid

physical trauma to prevent new lesion.

Figure 1. Macula depigmentation; (A and B) colli posterior, (C and D) right acromial. From the first follow-up (after 2

months treatment), there is no changes in size or color (Fig.2). No new patches. The treatment was changed with tacrolimus

0.1% ointment twice daily.

Quality of Life Measurement for Vitiligo: Is It Important?

421

Figure 2. 1

follow-up after 2 months treatment. No changes in depigmentation macules (A, B and C)

From the second follow-up (after 2 months

treatment), there are changes in colors but not in size

(Fig.3). The lesion became pinkish. No new lesion.

The treatment continued with tacrolimus 0.1%

ointment twice daily.

Figure 3. 2

follow-up after 2 months treatment. Depigmentation macules became eritematous (A and B).

From the third follow-up (after 2 months

treatment) macule in right shoulder became smaller

(Fig.4). No new lesion. We check the QoL and got

the SkinDex-29 total score is 55 with linear score is

37.9 which is moderate impact in QoL. The

treatment continued with tacrolimus 0.1% ointment

twice daily.

Figure 4. 3

follow-up after 2 months treatment. Depigmentation macules became smaller (A and B).

3 DISCUSSION

The diagnose of vitiligo in this case based on clinical

history, physical and dermatological examination.

Vitiligo is an acquired, chronic, pigmentary disorder

characterized by the progressive loss of cutaneus

melanocytes ad abnormality in their normal

function, resulting in hypopigmentated skin areas

which progressively become amelanotic.

(Gianfaldoni et al, 2018)

On the basis of the

polymorphic distribution, extension, and number of

ICTROMI 2019 - The 2nd International Conference on Tropical Medicine and Infectious Disease

422

white patches, vitiligo is classified into generalized

(vulgaris, acrofacial, mixed), universalis, and

localized (focal, segmental, and mucosal)

types.(Birlea et al,2012) The clinical manifestation

of vitiligo is the appearance of acquired milk-white

macules with fairly homogeneous depigmentation

and well-defined. (Birlea et al,2012) From our case

that, the milk-white macule first appear in colli

posterior.

The white macule is became larger and appear

in different region and she got a low self-esteem

from her skin condition. Depigmentation macules

can be triggered by psychologic stress and stimulate

hypothalamic-pituitary-adrenal (HPA) axis that

secret catecholamine. Catecholamine will bound to

-receptor in arterial wall of the skin and mucose

leading to epidermal– dermal hypoxia, and possibly

oxidized by different oxidative systems with

formation of quinones, semiquinone radicals, and

oxyradicals that destroyed melanocytes.(Mohammed

et al,2015)

Neural factors have a important role in vitiligo

onset and exacerbation. Keratinocytes can synthesis

and degraded catecholamine. Tyrosine was

converted into melanin and catecholamine type

neurotransmitters (neural signaling molecules that

control both central and peripheral nervous systems

by a tyrosine hydroxylase enzyme). Stress products

such as reactive oxygen species (ROS) can be

produced by exogenous and endogenous stimuli

such as catecholamine. In addition, abnormally

increased catecholamine can produce

vasoconstriction leading to epidermal– dermal

hypoxia, and possibly oxidized by different

oxidative systems with formation of quinones,

semiquinone radicals, and oxyradicals. However,

local and systemic high levels of H

produced by

catecholamine are able to alter calcium homeostasis,

so perturbing the uptake of l-phenylalanine, the

amino acid precursor of tyrosine in melanocytes. It

is reasonable to suggest that the increased levels of

these oxidative radicals from oxidation of

monoamine and their metabolites might contribute

to melanocyte damage in the early phase of

vitiligo.(El-Sayed et al,2018)

Vitiligo has a remarkable impact on QoL and

brings social stigma and some people belive it is

God’s punishment for the sins. We use quality of life

indexes for measure the QoL of the patient with

SkinDex-29. This index has twenty-nine items that

evaluate three domains: degree of symptoms,

psychosocial functioning and emotional status. The

possible answers are: never, rarely, sometimes,

often, and always, given in a scale from 1 to 5 points

respectively and the final score is established either

by total score or mean for items of each domain

(domain score). We use total score from Prinsen et

al that facilitate the application this index in clinical

practice, to round off the cutoffs for mild, moderate,

and severe impairment to ≥20, ≥30, and ≥40 points,

respectively, for the domain and overall scores.

Prinsen et al,2011;De Paula et al,2014)

The result

from this index is 75.86 which has severe impact in

patient’s QoL. This have 7 items for symptoms, 12

items for psychosocial functioning and 10 items

emotional status. From this index we can see that the

disease has a great impact in her emotional and

psychosocial function.

Psychosocial aspect is the most inﬂuent factor

that affects the QoL of vitiligo patients. It derives

from various subjective symptoms such as

depression, anxiety, anger, embarrassment, self

consciousness. Patients with vitiligo not only have

visible skin symptoms, but are often glared at or

even avoided for fear of infection or for disgust or

even describe as God’s punishment for the sins.

They experience discrimination from others and

believe that they do not receive adequate support

from their doctors. (Mitrevska et al, 2012;Al-

Mubarak et al,2011) This result a little different

from our patient, whereas our patient experienced all

of this especially from her big family.

Currently, no speciﬁc psychological therapeutic

intervention prevails based on published evidence.

Holistic approach is essential in dealing with vitiligo

because of the profound and the far-reaching effects

not only of the diseases, but also of treatments. It is

necessary to talk to patients and educate about the

disease also discuss the impact of their disease, how

they cope with it, and how they feel about it.

(Hedayat et al, 2016) The ﬁrst step of improvement

of QoL is establishing a good doctor–patient

relationship for the motivation of the therapy,

especially in phases of insufﬁcient success.

Multidisciplinary team approach can be helpful.

Symptoms of anxiety and depression should be

treated by a psychologist or even a psychiatrist.

Coping responses are related to the level of

selfesteem. (Hedayat et al, 2016;Mitrevska et al,

2012;Silververg et al,2014)

Patients appreciate the

opportunity to express difﬁculties related to their

disease and to be listened to and understood. Those

with a positive self image are better able to cope

with the effect of physical disabilities. From our

patient she has a severe QoL before, and after a 4

month treatment she can accept the disease and has

an improvement of her QoL. She also attend a

Quality of Life Measurement for Vitiligo: Is It Important?

423

higher education and not so low-self esteem and

proud of herself.

4 CONCLUSION

Vitiligo is considered as a psychosomatic disorder

and has a devastating psychosocial effect that have a

great impact on patient’s quality of life. Holistic

approach is essential to manage vitiligo patient, not

only to treated the clincal aspect but also it is

important to evaluate the QoL of the patient from

time to time.

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