Validation of the Malay Version of Autoimmune Bullous Disease

Quality of Life (ABQOL) Questionnaire

E. W. Y. Yap

, S. E. Choon

, D. F. Murrell

, K. E. Tey

, Subramaniam P.

Department of Dermatology, Hospital Sultanah Aminah Johor Bahru, Johor, Malaysia

Murrell, Dedee F, Department of Dermatology, St George Hospital, Sydney, Australia

Subramaniam, Premaa, Clinical Research Centre, Hospital Sultanah Aminah Johor Bahru, Malaysia

Keywords: Autoimmune blistering disease, Quality of life, Malay

Abstract: Autoimmune blistering diseases (AIBD) represent a group of rare and chronic disorders with significant

impact on quality of life (QoL). This study aimed to assess the validity and reliability of the Malay

translation of the autoimmune bullous disease quality of life (ABQOL) questionnaire. This is a cross-

sectional, questionnaire based study involving 75 patients with AIBD. The Malay version of ABQOL was

produced by forward-backward translation of the original ABQOL. This was then administered to the

recruited patients along with validated Malay versions of Dermatology Life Quality Index (DLQI) and Short

Form Health Survey (SF-36) questionnaires. Validity was evaluated across a range of indices and reliability

was assessed using internal consistency and test-retest methods. Internal consistency and test-retest

reliability were high (Cronbach alpha= 0.940, r= 0.89). The Malay ABQOL had high correlation with the

DLQI (r=0.73. p<0.001) and moderate correlation with the SF-36 (r=0.50, p<0.001). It also correlated

moderately with PDAI and BPDAI disease severity scores (r=0.47, p<0.001, and r=0.60, p= 0.002). There

was no significant difference in proportion of insensitive items between the ABQOL versus DLQI, and

ABQOL versus SF-36. This study is limited by single study site with small sample size. We failed to

include the whole spectrum of AIBDs. In conclusion, the Malay ABQOL is a valid and reliable tool for

assessing QoL in AIBD patients.

1 INTRODUCTION

Autoimmune blistering diseases (AIBD) represent a

group of rare and chronic condition which causes

significant distress to those suffering from it.

Clinical subtypes are dependent on the protein sites

within the keratinocyte membrane and dermo-

epidermal junction to which pathogenic auto-

antibodies target. Regardless of subtype, AIBD

cause enormous physical and psychological burden.

(Sebaratnam et al., 2012)

Quality of life (QoL) assessment tools take

intoconsiderationpatients'perspectivesoftheir

disease and treatment, their perceived need for

healthcare,andtheirpreferencesfortreatment

and outcomes (Carr & Higginson, 2001). Being

patient centred, aspects of patients’ health status that

are significant for the patient, but may not correlate

with clinical severity can be better identified with

the use of QoL assessment tools. In the past, QoL

issues amongst patients have frequently been

overlooked by clinicians due to various reasons,

amongst which include time constrains and

difficulty in interpreting as compared to laboratory

parameters. However, this had begun to change as

doctors and researchers started recognizing QoL as

outcome measures in clinical trials (Renzi et al.,

2005). Over the past two decades, multiple attempts

of evaluating AIBD’s impact on quality of life

(QoL) have been conducted in various parts of the

world, mostly using generic and skin specific QoL

questionnaires. Some of these include The Medical

Outcome Study 36-item Short-form Survey (SF-36),

Dermatology Life Quality Index (DLQI), Skindex

and 12-item General Health Questionnaire (GHQ-

12). Although all of these studies consistently

reported negative QoL impact, the generic nature of

these questionnaires may have limitations in

capturing small changes affecting AIBD patients

(Terrab et al., 2005; Tabolli et al., 2008; Paradisi et

al., 2012; Ghodsi et al., 2012).

This had led to the

formulation of the Autoimmune Bullous Disease

Yap, E., Choon, S., Murrell, D., Tey, K. and P., S.

Validation of the Malay Version of Autoimmune Bullous Disease Quality of Life (ABQOL) Questionnaire.

DOI: 10.5220/0008150300400043

In Proceedings of the 23rd Regional Conference of Dermatology (RCD 2018), pages 40-43

ISBN: 978-989-758-494-7

Quality of Life (ABQOL) questionnaire by the

Australian panel of bullous experts, which is 17-item

questionnaire looking at impact of autoimmune

bullous disease on QoL (Sebaratnam et al., 2013).

There is paucity of Malaysian data regarding AIBD

impact on QoL which is partly contributed by the

lack of validated AIBD-specific QoL instruments,

particularly in the Malay language. Thus, the

purpose of this study is to translate and adapt the

ABQOL questionnaire into Malay and evaluate its

validity and reliability in the Malaysian context.

2 METHODS

Patients Selection

Patients with histologically confirmed diagnosis of

AIBD with self-professed proficiency in Malay

language, at least 18 years old and able to give

informed consent were recruited.

Translation of questionnaire

Permission to translate and use the ABQOL

questionnaire was obtained from the authors who

developed them.

The questionnaire was forward

translated to Malay by a certified translation agency

in Malaysia. The Malay questionnaire was then

reviewed by a group of doctors who are proficient in

the language to ensure cultural relevance. Following

that, the translated questionnaire was given to a

different translation agency which had no access to

the original ABQOL to be back-translated. The

back-translated version was then reviewed against

the original by the original authors of the ABQOL.

Discrepancies found between the forward and

backward translations were resolved between the

authors of the original ABQOL, principal

investigator, and the 2 independent translation

agencies.

Study procedures

Medical records of recruited patients were reviewed

to verify diagnosis of AIBD, duration of disease and

treatment regimens. This was followed by a

complete physical examination evaluating severity

and stage of AIBD. All patients recruited were asked

to fill up 3 patient-administered questionnaires. The

questionnaires involved are the validated Malay

translations of:

a. Dermatology Life Quality Index (DLQI)

(Finlay & Khan, 1994)

b. The Medical Outcome Study 36-item Short-

form Survey (SF-36) (Ware & Sherbourne,

1992)

c. Treatment of Autoimmune Bullous Disease

Quality of Life (ABQOL) (Sebaratnam et al.,

2013)

Twenty-one out of the 75 patients recruited were

required to return to the clinic 10-14 days after

completion of the questionnaires for a repeat

TABQOL questionnaire.

3 RESULT

Seventy-five patients with AIBD were recruited

from May 2014 to January 2015. Mean age of

patients was 54.7+15.6 years. Twenty four patients

were male and 51 were female. There were 30

Malay patients, thirty Chinese patients, fourteen

Indian patients and 1 patient of other race. Thirty-

five patients had pemphigus vulgaris, seventeen had

pemphigus foliaceous and 23 had bullous

pemphigoid. Patients’ responses to questions within

the Malay ABQOL were illustrated in Figure 2.

Effects of gender, age group, disease duration,

autoimmune bullous disease (AIBD) subtypes and

treatment grade on ABQOL scores were summarised

in Table 1. Measures of validity and reliability of the

Malay translation of ABQOL is summarised in

Table 2.

Table 1: Effects of gender, age group, disease duration,

autoimmune bullous disease (AIBD) subtypes and

treatment grade on ABQOL scores

ABQOL

scores

(IQR)

p-value

Gender Male 12.5 (22.0) 0.941

Female 11.0 (15.0)

Age <55 18.0 (17.0)

p<0.001

>55 9.0 (14.0)

Disease

Duration

<6 months 21.0 (26.0)

p=0.012

>6 months 10.5 (14.0)

AIBD

subtype

Pemphigus 15.5 (16.0)

p=0.001

Pemphigoid 7.0 (8.0)

Ethnic

group

Malay 18.5 (15.0)

p<0.001

Chinese 7.5 (10.0)

Malay 18.5 (15.0) p=0.562

Indian 17.0 (28.0)

Chinese 7.5 (10.0)

p=0.025

Indian 18.5 (15.0)

p-values generated using Mann-Whitney test

Validation of the Malay Version of Autoimmune Bullous Disease Quality of Life (ABQOL) Questionnaire

Figure 1 : Responses of patients (in percentage) to questions in the Malay ABQOL (n=75)

Table 2: Validity and reliability of the Malay translation of

ABQOL

Methods Results

Face and content

validity

Forward-

backward

translation,

resolution of

discrepancies by

author and owner

of the original

questionnaire

Acceptable

Convergent

validity

Correlation with

PDAI

Correlation with

BPDAI

Correlation with

DLQI

Correlation with

SF-36

r= 0.47,

p<0.001

r= 0.60,

p=0.002

r= 0.73,

p<0.001

r= -0.50,

p<0.001

Discriminant

validity

(Fisher exact test)

DLQI

SF-36

p= 0.758

p= 0.803

Internal

consistency

Cronbach’s alpha α= 0.940,

p<0.001

Test-retest

reliability

ICC r=0.89

4 DISCUSSION

Averyhighlevelofinternalconsistencyandtest‐

retest reliability was found, confirming findings

of the English version of ABQOL (Sebaratnam et

al., 2013). The Malay ABQOL correlated highly

withtheDLQIbutmoderatelywiththeSF‐36.In

boththepemphigusandpemphigoidgroupof

patients, the ABQOL correlated moderately with

diseaseseverity.theseresultssuggestedthatthe

degreetowhichpatient’sQoLwasaffectedmay

notbedependentonclinicalseverityalone.Other

factors contribute as well, including patient

demographic characteristics,thenaturalhistory

and site of skin disorders, and time to diagnosis

(Tabolli et al., 2008).

Unlike the results of the original authors, who

had proven that the English ABQOL questionnaire is

more sensitive than the DLQI and SF-36 in

capturing the effects on QoL caused by changes in

the clinical status (Sebaratnam et al., 2013), we

found all 3 tools equally good. There were 10

insensitive items in the Malay version of ABQOL,

which is 3 items more compared to the original

version of ABQOL. Questions pertaining to sexual

activity, interpersonal relationships and workplace

or school discrimination had the highest percentage

of respondents with scores of zero (73.3%, 81.3%

and 81.3% respectively). We felt the Asian culture

may have played a role here. Sex and sexuality is not

comfortably discussed amongst many Asians

(Nicolosi et al., 2004). Besides, many Asians

emphasises the importance of family harmony and

interpersonal relationships, and the high value of

education and hard work. Saving face – the ability to

preserve the public appearance of the patient and

family for the sake of community propriety is

extremely important to most Asian groups (Kramer

et al., 2002). This may have accounted for the low

scores of these questions.

notatall/never alittle/sometimes

RCD 2018 - The 23rd Regional Conference of Dermatology 2018

5 CONCLUSION

The Malay version of AABQOL is a valid and

reliable tool in measuring impact of AIBD on

patient’s quality of life (QoL).

ACKNOWLEDGEMENT

We would like to thank Persatuan Dermatologi

Malaysia (PDM) for awarding a grant for this

research.

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Validation of the Malay Version of Autoimmune Bullous Disease Quality of Life (ABQOL) Questionnaire