Introduction
Alopecia areata (AA) is a common, autoimmune disorder that causes non-scarring hair loss. Recent studies suggest that it affects approximately 2% of the global population, all age and ethnic groups, with no visible gender predilection [1–3]. The clinical presentation of AA varies, ranging from small well-circumscribed patches of hair loss to the extensive involvement of the scalp known as alopecia totalis, or even the entire body referred to as alopecia universalis. Additionally, nail changes may also manifest in some cases [4, 5].
Numerous studies have also demonstrated that AA can have a significant impact on an individual’s quality of life (QoL), affecting not only their physical appearance but also their emotional wellbeing, self-esteem and social interactions. Due to concerns about their appearance, individuals with AA may withdraw from social activities and experience feelings of stigmatization [6–9]. Furthermore, the connection between AA and mental health issues, such as depression and anxiety has also been well-documented [10].
Over the years, there has been a growing interest in using tools to evaluate the QoL of patients with various medical conditions. These tools have enabled healthcare professionals to observe the impact of specific diseases on a patient’s social activities, wellbeing or professional activities [9, 11]. Currently, there are numerous dermatology-specific questionnaires designed to assess the impact of skin diseases and dermatological conditions on a person’s quality of life. They include the Dermatology Life Quality Index (DLQI) questionnaire, which was created in 1994 by Finlay et al. It is a tool widely used in dermatology research and clinical practice to evaluate the subjective burden of skin disorders from the patient’s perspective [12]. Currently there are also other more specific tools available that are used to evaluate the quality of life of patients with scalp diseases, such as Scalpdex or Hairdex [13, 14]. However it is important to note that these instruments were originally created to assess the QoL of patients with various scalp conditions, not exclusively for those with AA, and may not adequately reflect the specific psychological and social challenges that these patients are facing.
Therefore in 2013, Fabbrocini et al. introduced the Alopecia Areata-Quality of Life Index Questionnaire (AA-QLI), a specifically designed instrument to evaluate the impact of AA on the QoL of affected individuals [15].
Material and methods
The Polish version of the AA-QLI questionnaire was translated and validated in accordance with international standards. The permission to translate the questionnaire was granted by the Fabbrocini copyright holders.
Translation and validation
Initially, the original English version of the AA-QLI questionnaire was translated into Polish by two independent translators who had no prior exposure to the questionnaire. These initial translations were then compared to create a more precise third version. Afterwards, a bilingual expert in the field assessed the three translated versions to identify any inconsistencies and created a unified version. Subsequently, back-translation from the Polish version was conducted, and the results of the reverse translation were discussed with the author of the original version of the questionnaire. The collaborative effort resulted in the creation of the Polish version of the AA-QLI questionnaire.
In the following phase, a cognitive debriefing was conducted to evaluate the questionnaire’s clarity and wording. The questionnaire was administered to a group of 6 female patients with an age range from 21 to 44 (mean ± SD: 35.33 ±7.67). Participants were asked to evaluate the clarity and wording of the questions, and the time required to complete the questionnaire was documented. Notably, none of the respondents raised any concerns, provided comments, or suggested changes. Consequently, the questionnaire was approved for the next stage without any need for modifications.
The next step involved the validation of AA-QLI. The questionnaire was distributed to a group of 21 adult patients, 15 females and 6 males, diagnosed with AA with a various severity of disease (from mild to severe, according to Alopecia Areata Scale [16]). The diagnosis was made clinically and established using trichoscopy by an experienced dermatologist [17]. The mean age of participants was 30.62 ±7.95 years (ranged from 19 to 44 years). The mean age of females was 31.7 ±7.7 years and males was 28.0 ±8.0 years.
All patients were requested to complete the questionnaire twice with a 5-day interval between administrations, to assess test-retest intrarater reliability. This specific timeframe was chosen to minimize the likelihood of patients recalling their previous responses while simultaneously maintaining the stability of clinical severity in AA.
In addition to AA-QLI, all participants were also asked to complete the Polish version of the DLQI [18] which served as a reference questionnaire to assess convergent validity. The DLQI was chosen as it was the pioneering survey aimed to evaluate the quality of life specifically in dermatology patients and is at present a predominant instrument used among individuals in dermatological studies.
Statistical analysis
The obtained results were subjected to statistical analysis. The Shapiro-Wilk normality test was used to determine the normality of variable distribution. To evaluate the internal consistency of the Polish version of AA-QLI, Cronbach alpha (α) coefficient was used. Cronbach α coefficient of at least 0.7 indicates the good internal consistency of the questionnaire, whereas ≥ 0.9 may suggest that some questions of the questionnaire may be redundant [19]. Additionally, the correlations between the responses to each question and the total questionnaire score were calculated using Spearman’s correlation coefficient. The assessment of the test-retest reliability (reproducibility) of the Polish version of AA-QLI was evaluated based on the intraclass correlation coefficient (ICC) by the comparison of responses to each question given by the same individual on day 1 and day 5. ICC values > 0.7 are considered as acceptable, whereas > 0.9 stand for very good reliability of the questionnaire [20]. Additionally, correlations between responses to each question from the first and second completion of the questionnaire were evaluated using Spearman’s correlation coefficient and Wilcoxon test was used to assess the presence of any significant differences in responses. The relationship between the total score of AA-QLI and total score of DLQI completed by each individual was assessed using Spearman’s correlation coefficient, for evaluation of convergent validity. All statistical analyses were performed using R 3.6.1 Windows software and Statistica 13.1 (Dell Inc. Tulusa, USA) for the assumed level of significance p-value < 0.05 (probability of type I error less than 5%).
Results
The Polish version of the AA-QLI questionnaire was completed by 21 patients suffering from AA on day 1 and day 5. On average, it took less than 5 min for the respondents to complete the questionnaire. No difficulties were reported in understanding the questions, indicating that the Polish translation of AA-QLI is comprehensible for Polish-speaking patients.
The Cronbach α coefficients based on the first completion of the questionnaire was 0.86, which indicates a high internal consistency of the Polish version of AA-QLI and that questionnaire items are interrelated but not redundant. Furthermore, there were statistically significant positive correlations between each question score and total questionnaire score (with the exception of question 9 and 21) (Table 1). The Cronbach α coefficient based on the second completion of the questionnaire was similar to this from the first completion (α = 0.87).
Table 1
Correlations of each question score and total score of the Polish version of the AA-QLI questionnaire
ICC coefficient was 0.93, which indicates very good reproducibility (test-retest reliability) of the Polish version of AA-QLI. There were statistically significant positive correlations between each question score obtained during the first and the second completion of the Polish version of the questionnaire (Table 2). Furthermore, no statistically significant differences were found between each question score during the first and second completion of the questionnaire as assessed with Wilcoxon test (p > 0.05).
Table 2
Correlations between each question score obtained during the first and second completion of the questionnaire
The total score of AA-QLI was positively correlated with the total score of DLQI (R = 0.49; p = 0.024) indicating that the higher score of AA-QLI was associated with the higher score of DLQI.
The presented results indicate satisfactory internal consistency and reproducibility of the Polish version of the AA-QLI questionnaire.
The Polish version of AA-QLI is presented in Appendix 1.
Discussion
AA is regarded as the most common cause of non-scarring hair loss [21]. AA can result in a noticeable change in one’s physical appearance, which may lead to a decrease in self-esteem. Individuals with AA may experience feelings of self-consciousness, especially if the hair loss is extensive or occurs in visible areas. While there are treatment options available for AA, they may not always be effective. The burden of ongoing treatments and the uncertainty of outcomes can add to the stress experienced by individuals with the condition and also may contribute to the development of depression or anxiety [22–25]. Simultaneously, it has been observed that psychiatric disorders or stress can act as triggers for the onset and exacerbation of AA and the negative consequences of the condition may further contribute to or worsen psychological issues [26–28]. Therefore, recognizing the psychological impact of AA is crucial for both affected individuals and healthcare professionals thus developing tailored questionnaires for AA patients to evaluate their quality of life, taking into consideration their unique challenges and needs is so important.
The AA-QLI questionnaire is an instrument developed specifically for AA patients. The questionnaire is divided into two parts. The first part encompasses questions related to age, gender, age of disease onset, time of the last relapse, and the percentage of the affected skin. The second part consists of a total of 21 questions, categorized into three sections: subjective symptoms, relationship, and objective signs. Patients provide responses on a scale ranging from 1 (not affected at all) to 4 (highly affected), reflecting their experiences over the last month. The cumulative score can range from 21 to 84. This questionnaire contains questions that address particular aspects of quality of life which may be distinct to this condition.
The present study describes the process of the formation and validation of the Polish version of the AA-QLI questionnaire. The analysis of internal consistency between the questions of the questionnaire was assessed using Cronbach α coefficient and showed good internal consistency of the Polish version of the AA-QLI questionnaire. Statistically significant, positive correlations between the results obtained for each question separately and for a total AA-QLI score were found.
The analysis of the reproducibility (test-retest intrarater reliability) of the questionnaire was performed, based on the responses from the first and second completions of the questionnaire with an interval of 5 days. The reliability of the questionnaire, evaluated using ICC with the value of 0.93 was very good. Further, no statistically significant differences were observed between each question score during the first and second completion of the questionnaire. These data indicate a very good reliability (reproducibility) of the Polish version of the AA-QLI questionnaire. The evaluation of convergent validity showed a positive correlation between AA-QLI and established DLQI scores. However this correlation was not strong which may result from the fact that DLQI is a tool for various dermatological conditions and is not specific for scalp diseases.
The English version of the AA-QLI questionnaire is used both in clinical practice and scientific research, however it has limitations for Polish-speaking individuals with AA. Recently, the Persian version of the AA-QLI questionnaire has been created and validated by Nasimi et al. [29]. Their results have shown an appropriate validity, internal stability (α = 0.91) and the reliability of the Persian version of the questionnaire [29].
Conclusions
The Polish version of the AA-QLI questionnaire can be used in both clinical practice and research by Polish-speaking patients and clinicians. It seems crucial to continuously assess the QoL of individuals affected by AA, particularly using AA-specific questionnaires. These tools provide valuable insights into patients’ unique experiences. The results can help build a robust support system as this condition extends beyond physical condition. Recognizing and addressing the emotional impact and seeking support are essential components of managing the overall wellbeing of those living with AA. The Polish version of the AA-QLI questionnaire enables the recognition and assessment of the impact of AA on psychological, emotional and social aspects of quality of life in Polish-speaking individuals suffering from AA.
