CHAPTE R 9
CHAPTER 15 CHAPTER 15
118
1
TITLE
Quality of life in black South African women with alopecia: a pilot study.
RUNNING HEAD
Quality of life in black South African women with alopecia
KEY WORDS
Alopecia, quality of life, subjective symptoms, objective signs, relational impacts, composite indicators, partial least squares path modeling
WORD, TABLE AND FIGURE COUNT
Abstract 259
Text 1882
Tables 1 Figures 6
AUTHORS
N.C. Dlova1 G. Fabbrocini2 C. Lauro3 M. Spano3 A. Tosti4 R.J. Hift5
1Discipline of Dermatology, Nelson R Mandela School of Medicine, University of KwaZulu- Natal, Durban, South Africa.
2Division of Dermatology- Department di Medicine clinical e chirurgic, University of Naples Federico II, Napoli, Italy.
3Department of Economical and Statistical Sciences, University of Naples Federico II, Italy
4Department of Dermatology and Cutaneous Surgery, University of Miami Miller School of Medicine, Miami, Florida, USA
5School of Clinical Medicine, University of KwaZulu-Natal, Durban, South Africa.
119
2
CORRESPONDING AUTHOR
Dr N.C Dlova
Discipline of Dermatology
Nelson R Mandela School of Medicine University of KwaZulu-Natal
Private Bag X 7 Congella 4013 South Africa.
Telephone +27 -31-2604531 Fax +27 (31) 5666778
+27 (31) 3058332 E-mail [email protected]
FUNDING
Dr Ncoza Dlova is supported by a Discovery Foundation Academic fellowship award, a Dermatological Society of South Africa research grant, the University of KwaZulu-Natal (UKZN) College of Health Sciences Strategic Research Fund, the UKZN Competitive Research Fund, a National Research Foundation Indigenous Knowledge Systems grant, a Medical Education Partnership Initiative (MEPI) grant and is a Fellow of the UKZN Leadership and Equity Advancement Programme.
CONFLICT OF INTEREST
None
120
3
ABSTRACT Background
Alopecia has been shown to have a significant impact on quality of life, particularly in women.
There are however no data for African populations.
Objectives
To pilot an original questionnaire and a model-based methodology to measure the Quality of Life (QoL) and its determinants on a sample of black South African women of African ancestry affected by alopecia.
Methods
50 participants aged 21-79 were chosen at random from patients presenting to dermatologists with alopecia. We used an original questionnaire1 consisting of 24 questions grouped into three categories assessing the impact of subjective symptoms, objective signs and relational impact, each measured on a 4-level Likert scale. These were then combined using component based structural equation model2,3 to return a Quality of Life Index (QLI) and to rank the factors contributing to this.
Results
On a scale ranging from 0 (high QoL) to 100 (severely decreased QoL), we found a mean QLI score of 67.7. The negative impact of alopecia on QoL was higher in younger patients than older patients. The factors with the highest impact (as assessed by path coefficient, a measure of weighting) were those relating to the subjective experience of alopecia and self-image (56.3%), followed by those relevant to relationships and interaction with other people (34.8%).
The presence of objective symptoms and signs such as pruritus were of minor importance (8.9%).
Conclusions
Although not a life-threatening condition, alopecia may seriously impair QoL of African black women, particularly by inducing anxiety and reducing self-esteem. Health care practitioners should be mindful of this and intervene appropriately to mitigate this.
121
4
INTRODUCTION
Primary alopecia of the scalp is usually classified into scarring and non-scarring, and requires a good history, reliable clinical records, adequate biopsy and histopathological interpretation to make a definitive diagnosis4,5. It has been established that the most common type of hair loss in both sexes is androgenetic alopecia, and racial differences in the prevalence or pattern have been observed6.
Ascertaining the influence and impact of skin diseases on patients’ quality of life (QoL), using quality of life indicators, is important, and is now well established in dermatology1,7-11. Hair plays such a vital role in aesthetics that few skin conditions carry as much emotional burden as alopecia, especially in women6,12, some of whose emotions seem disproportionate to the degree of alopecia, indicating poor self-esteem and low QoL6,13-16. Such feelings can be easily aggravated by non-compassionate health care practitioners who may underestimate the impact of hair loss on such patients. However, there is little published information on the psychological effects of patients with hair loss in African countries, possibly in part because of a focus on the burden of infectious diseases, a priority in the developing countries17, rather than aesthetics.
Schmidt et al. looked at the correlation between QoL and coping strategies in 50 female patients diagnosed with diffuse or androgenetic alopecia using Hairdex, an instrument developed to measure QoL in patients with hair loss18. Their findings indicated that patients with obvious hair loss reported a more negative impact on various Hairdex aspects (functioning, emotions, self-confidence and stigmatization) than those who had slightly visible hair loss. Their small group of studied patients showed striking signs of psychological disturbance despite having little obvious hair loss.
Van der Donk et al. studied 58 women with androgenetic alopecia15 and found their daily behaviour to be influenced by alopecia in 88% of participants, with 75% indicating a loss of self-esteem. Other authors have emphasized the inherent intricacies and challenges of dealing with an unpredictable and yet visible and progressive disorder19. Although there are extensive reports on the psychosocial consequences of hair loss, most studies have used a medical instead of a holistic psychological approach19. Factors that determine the psychological impact of alopecia include those which are disease-related (visibility of hair loss), psychological (beliefs about illness), behavioural (coping) and demographic (gender)12,15,19,20.
Although investigators have studied QoL in patients with acne21, psoriasis22 and general skin disorders the effect of alopecia on an African population has not been studied 6. This is an omission, given the increasing prevalence of hair disorders among black women; such disorders are currently rated as the fifth commonest skin disorder amongst African Americans23,24 and black South Africans25.
The aim of this pilot study is to investigate the effectiveness of a newly developed questionnaire and algorithm for determining QoL in African women with alopecia, and secondarily to provide preliminary estimates of the impact of alopecia in this population.
122
5