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Factors affecting quality of life in patients with vitiligo Part 2

Patients and methods

Participants and settings

A nationwide questionnaire-based study was conducted in 21 hospitals and clinics in Korea from July 2015 to June 2016. All patients aged ≥ 20 years diagnosed with vitiligo by dermatologists, and who provided written informed consent prior to the survey were enrolled. We restricted the participants to adult patients, because different questionnaires should be applied to children and adults. We explored demographic characteristics and vitiligo phenotypes and determined Skindex-29 scores. All patients first completed the questionnaires in paper-and-pencil format, and dermatologists then confirmed the clinical profiles after interviewing and examining the patients. The study protocol was designed in accordance with the Declaration of Helsinki and was approved by the institutional review board of each hospital.

Demographic characteristics

Demographic characteristics recorded included age, sex, marital status (single or married) and educational background (elementary school graduate, middle school graduate, high school graduate or college graduate).

Vitiligo phenotypes

The vitiligo phenotypes included subtype (segmental or nonsegmental), disease duration (< 1, 1–4, 5–9 or ≥ 10 years), affected body surface area (BSA; < 05, 05–09, 1–4, 5–9, 10–19 or ≥ 20%), involvement of visible body parts (yes or no) and the particular body parts involved (face and neck, scalp, upper extremities, lower extremities, trunk and genital area).

The Skindex-29 questionnaire

QoL was assessed using the Korean version of Skindex-29. This instrument is employed extensively to measure the effects of skin disease on a patient’s life;8,9 the Korean version was cross-culturally adapted by Ahn et al.10 The semantic equivalence of all back-translated items has been confirmed,10 and the Korean version has been validated by several previous studies.11–13 The questionnaire contains 29 items exploring the influence of skin disease on daily life using a five-point scale: 0 (never), 1 (rarely), 2 (sometimes), 3 (often) and 4 (all the time). The responses were transformed into linear scores varying from 0 (no effect) to 100 (effect always experienced). Each item belongs to one of three domains (symptoms, functioning and emotions); the scores of the three domains were calculated as the mean score of the items included in each domain.

The major items affecting patients with vitiligo

The proportions of patients affected by each item (sometimes, often and all the time) were calculated. The items of most concern were identified based on the answers.

Quality-of-life impairment

The outcomes of the study were mild or severe impairment of QoL, as determined by each domain (symptoms, functioning and emotions) of Skindex-29. Mild and severe QoL impairments were defined using the cut-off scores suggested by Prinsen et al.:14,15 ≥ 39 (mild) and ≥ 52 (severe) for symptoms, ≥ 21 (mild) and ≥ 37 (severe) for functioning, and ≥ 24 (mild) and ≥ 39 (severe) for emotions.

Statistical analyses

Absolute and percentage frequencies were determined for categorical variables, and position (mean and median) and scattering (SD, range) were described for continuous variables. Univariate and multivariate logistic regression analyses were sequentially performed to identify the factors independently associated with QoL impairment in each domain of Skindex29. All analyses were performed using R 3.3.1 (R Foundation for Statistical Computing, Vienna, Austria).

Results

In total, 1123 patients with vitiligo were recruited from 21 hospitals and clinics. Of the participants, 609 (542%) were male and 514 female (458%), with a mean age of 498  152 years (range 20–84). The median duration of disease was 30 years (range 0–60). The detailed clinical characteristics of the enrolled patients are summarized in Table 1.

The results of Skindex-29

The Skindex-29 items of most concern to patients with vitiligo were as follows: no. 13: I worry that my skin condition may get worse (746% of patients); no. 3: I worry that my skin condition may be serious (629%); no. 22: My skin condition is a problem for the people I love (556%); and no. 6: My skin condition makes me feel depressed (535%) (Table 2).

Impaired quality of life and associated factors in terms of the symptoms domain

Of the patients with vitiligo, 146% (164 of 1123) had mild and 52% (58 of 1123) had severe QoL impairment in terms of the symptoms domain (Fig. 1). On multivariate logistic

Table 1 The clinical characteristics of the 1123 patients with vitiligo included in the present study

 

 

 

 

 

 

regression modelling, the involvement of visible body parts (OR 153) and a larger affected BSA (compared with < 05%; 5–9%: OR 278, 10–19%: OR 284 and ≥ 20%: OR 469) were associated with mild symptom impairment (Table 3). A larger affected BSA was also associated with severe symptom impairment (compared with < 05%; ≥ 20%: OR 810).

Impaired quality of life and associated factors in terms of the functioning domain

Of the patients with vitiligo, 488% (548 of 1123) had mild and 282% (317 of 1123) had severe QoL impairment in terms of the functioning domain. The factors associated with

Table 2 The Skindex-29 items that affected > 25% of patients with vitiligo

Affected

Items (in order of frequency)                        patients     Domain

13. I worry that my skin condition may          746%         Emotions get worse

3. I worry that my skin condition may            629%         Emotions be serious

22. My skin condition is a problem for          556%                Functioning the people I love

6. My skin condition makes me feel               535%         Emotions depressed

9. I worry about getting scars from my           498%         Emotions skin condition

12. I am ashamed of my skin condition        497%       Emotions

28. I am annoyed by my skin condition        476%       Emotions

5. My skin condition affects my social           450%                Functioning life

15. I am angry about my skin condition        448%       Emotions

24. My skin is sensitive                                 433%          Symptoms

4. My skin condition makes it hard to            427%                Functioning work or do hobbies

21. I am embarrassed by my skin 410%         Emotions condition

19. My skin is irritated                                  379%          Symptoms

23. I am frustrated by my skin condition      356%       Emotions

20. My skin condition affects my 354%         Functioning interactions with others

11. My skin condition affects how close       328%       Functioning

I can be with those I love

17. My skin condition makes showing           305%                Functioning affection difficult

26. I am humiliated by my skin    296%         Emotions condition

10. My skin itches                                         291%          Symptoms

14. I tend to do things by myself  275%         Functioning because of my skin condition

30. My skin condition makes me tired          264%       Functioning

8. I tend to stay at home because of my          263%                Functioning skin condition

 

Source

 

Factors affecting quality of life in patients with vitiligo Part 1

Correspondence

Gwang Seong Choi.

E-mail: garden@inha.ac.kr

Accepted for publication

4 April 2017

Funding sources

This study was supported by the Vitiligo Research Grant of the Korean Dermatological Association.

Conflicts of interest

None declared.

*Plain language summary available online

DOI 10.1111/bjd.15560

Background Little is known about factors affecting the quality of life (QoL) of patients with vitiligo, and previous studies have shown conflicting results. Objectives To explore the QoL of patients with vitiligo and to identify factors affecting QoL.

Methods A nationwide questionnaire-based study was conducted with 1123 patients with vitiligo recruited from 21 hospitals in Korea from July 2015 to June 2016. Data were collected using a structured questionnaire for demographic information and the Skindex-29 instrument. Mild or severely impaired QoL in patients with vitiligo was assessed according to each domain (symptoms, functioning and emotions) of Skindex-29. Multivariate logistic regression analyses were performed to determine the factors associated with QoL.

Results Of the enrolled participants, 609 were male and 514 female, with a mean age of 498 years (range 20–84). The median duration of disease was 30 years (range 0–60). Using multivariate logistic regression modelling, the involvement of visible body parts and a larger affected body surface area were consistently associated with QoL impairment in all three domains of Skindex-29. Additionally, the QoL of patients aged 20–59 years, who potentially had a more active social life than older patients, was associated with functional impairment. Furthermore, a higher educational background was associated with emotional impairment.

238              British Journal of Dermatology (2018) 178, pp238–244

Conclusions A multitude of factors significantly influence the QoL of patients with vitiligo. A better appreciation of these factors would help the management of these patients.

What’s already known about this topic?

  • Quality of life is highly impaired in patients with vitiligo.

What does this study add?

  • The involvement of visible body parts and a larger affect6ed body surface area were consistently associated with impaired symptoms, functioning and emotions.
  • Vitiligo with nonvisible lesions also considerably compromises quality of life; vitiligo should not be regarded as a cosmetic problem.
  • Patients aged 20–59 years experienced significant functional impairment, and those with a higher educational background had more impairment in their emotions.

 

Vitiligo is a chronic depigmentation disorder characterized by well-demarcated white macules and patches, reflecting selective melanocyte destruction. The condition affects 05–2% of the population and remains a major challenge in dermatology.1 Although vitiligo is generally asymptomatic, it profoundly impacts quality of life (QoL).2 Many patients with vitiligo experience stigmatization, low self-esteem and social isolation; even normal daily living may be compromised by the unusual appearance of patients.3 Nevertheless, vitiligo is often regarded as a cosmetic issue, and impairment of QoL tends to be underestimated.4

Major effort should be made to induce repigmentation in patients with vitiligo; however, treatment is not always successful.5,6 Furthermore, the clinical course is unpredictable, and patients frequently encounter recurrence and spread throughout their lifespan.7 Therefore, it is also important to manage the psychosocial impact of the disease, and clinicians should understand the factors associated with QoL impairment when treating patients with vitiligo.

Although a number of studies have already shown that QoL is highly impaired in patients with vitiligo, the factors influencing QoL have rarely been investigated in large populations. We conducted a nationwide questionnaire-based survey of QoL in patients with vitiligo. The factors associated with QoL impairment were examined from the viewpoints of symptoms, functioning and emotions.

Patients and methods

Participants and settings

A nationwide questionnaire-based study was conducted in 21 hospitals and clinics in Korea from July 2015 to June 2016. All patients aged ≥ 20 years diagnosed with vitiligo by dermatologists, and who provided written informed consent prior to the survey were enrolled. We restricted the participants to adult patients, because different questionnaires should be applied to children and adults. We explored demographic characteristics and vitiligo phenotypes and determined Skindex-29 scores. All patients first completed the questionnaires in paper-and-pencil format, and dermatologists then confirmed the clinical profiles after interviewing and examining the patients. The study protocol was designed in accordance with the Declaration of Helsinki and was approved by the institutional review board of each hospital.

Demographic characteristics

Demographic characteristics recorded included age, sex, marital status (single or married) and educational background (elementary school graduate, middle school graduate, high school graduate or college graduate).

Vitiligo phenotypes

The vitiligo phenotypes included subtype (segmental or nonsegmental), disease duration (< 1, 1–4, 5–9 or ≥ 10 years), affected body surface area (BSA; < 05, 05–09, 1–4, 5–9, 10–19 or ≥ 20%), involvement of visible body parts (yes or no) and the particular body parts involved (face and neck, scalp, upper extremities, lower extremities, trunk and genital area).

The Skindex-29 questionnaire

QoL was assessed using the Korean version of Skindex-29. This instrument is employed extensively to measure the effects of skin disease on a patient’s life;8,9 the Korean version was cross-culturally adapted by Ahn et al.10 The semantic equivalence of all back-translated items has been confirmed,10 and the Korean version has been validated by several previous studies.11–13 The questionnaire contains 29 items exploring the influence of skin disease on daily life using a five-point scale: 0 (never), 1 (rarely), 2 (sometimes), 3 (often) and 4 (all the time). The responses were transformed into linear scores varying from 0 (no effect) to 100 (effect always experienced). Each item belongs to one of three domains (symptoms, functioning and emotions); the scores of the three domains were calculated as the mean score of the items included in each domain.

The major items affecting patients with vitiligo

The proportions of patients affected by each item (sometimes, often and all the time) were calculated. The items of most concern were identified based on the answers.

Quality-of-life impairment

The outcomes of the study were mild or severe impairment of QoL, as determined by each domain (symptoms, functioning and emotions) of Skindex-29. Mild and severe QoL impairments were defined using the cut-off scores suggested by Prinsen et al.:14,15 ≥ 39 (mild) and ≥ 52 (severe) for symptoms, ≥ 21 (mild) and ≥ 37 (severe) for functioning, and ≥ 24 (mild) and ≥ 39 (severe) for emotions.

Statistical analyses

Absolute and percentage frequencies were determined for categorical variables, and position (mean and median) and scattering (SD, range) were described for continuous variables. Univariate and multivariate logistic regression analyses were sequentially performed to identify the factors independently associated with QoL impairment in each domain of Skindex29. All analyses were performed using R 3.3.1 (R Foundation for Statistical Computing, Vienna, Austria).

 

Source