Establishing and prioritizing research questions for the treatment of alopecia areata: the Alopecia Areata Priority Setting Partnership

Macbeth, A. E.; Tomlinson, J.; Messenger, A.G.; Moore-Millar, Karena; Michaelides, C.; Shipman, A. R.; Kassim, Jahn; Brockley, Julia; Szczecińska, Weronika; Farrant, Paul; Robinson, Ray; Rodgers, Jennifer; Chambers, J.; Upadhyaya, Suneet Kumar; Harries, Matthew

doi:10.1111/bjd.15099

Cited by 16 publications

(27 citation statements)

References 6 publications

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“…However, practitioners in such services are unlikely to have expertise in working with appearance‐related distress. There are very few studies that investigate the provision of psychological support for people with AA and the need for further research has been highlighted . However, the findings presented here can helpfully inform practice across therapeutic modalities.…”

Section: Discussionmentioning

confidence: 92%

“…There are very few studies that investigate the provision of psychological support for people with AA 29,30 and the need for further research has been highlighted. 31 However, the findings presented here can helpfully inform practice across therapeutic modalities. Specifically, they demonstrate how people who seem to develop more effective coping strategies are often engaged in acknowledging and challenging the meanings associated with hair loss.…”

Section: Discussionmentioning

confidence: 94%

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Living with alopecia areata: an online qualitative survey study

2019

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Summary Background Living with alopecia areata (AA) totalis and universalis (collectively referred to here as AA) involves unpredictable, sometimes rapid hair loss. There is currently no effective treatment and patients describe feelings of shock, loss, trauma and disrupted identity. Cultural meanings attached to hair and hair loss, including associations between hair and femininity, and hair loss and cancer may exacerbate distress. Consequently, wigs and make‐up are frequently used as camouflage, but this can produce feelings of inauthenticity, shame and anxiety. Objectives This article explores how meanings associated with hair and hair loss influence experiences of living with AA. We also aim to identify how this understanding might inform practice by healthcare professionals to best support patients to cope with the condition. Methods A total of 95 participants with AA completed an online qualitative survey about their experiences of living with the condition. Data were subjected to thematic analysis within a critical realist theoretical framework. Results The following four themes were identified: (i) It's (not) only hair; (ii) A restricted life; (iii) Abandon hope all ye who lose their hair and (iv) Seeking support in ‘a highly personal journey’. Conclusions Findings suggest that negative cultural meanings of hair and hair loss are pervasive and may drive social avoidance and camouflage behaviours in people with AA. Normalizing social interactions with healthcare practitioners, significant others and peers were cited as pivotal to positive adjustment. Support groups and online forums were highly valued particularly as few had been offered specialist psychological support. Future research should develop and evaluate psychological support in order to address the specific challenges of living with AA.

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Section: Discussionmentioning

confidence: 92%

Section: Discussionmentioning

confidence: 94%

Living with alopecia areata: an online qualitative survey study

2019

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“… 19 The need for psychological interventions for alopecia has been emphasised by patients and clinicians. 20 …”

Section: Introductionmentioning

confidence: 99%

A mixed methods survey of social anxiety, anxiety, depression and wig use in alopecia

2017

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ObjectivesThis study aimed to examine levels of social anxiety, anxiety and depression reported by people with alopecia as a result of a dermatological condition and associations with wig use. The study also sought to report on experiences of wearing wigs in social situations and the relationship with social confidence.DesignA cross-sectional survey was sent by email to the Alopecia UK charity mailing list and advertised on social media.ParticipantsInclusion criteria were a diagnosis of alopecia, aged 13 or above and sufficient English to complete the survey. Exclusion criteria included experiencing hair loss as a result of chemotherapy treatment or psychological disorder. Participants (n=338) were predominantly female (97.3%), Caucasian (93.5%) and aged between 35 and 54 years (49.4%) with a diagnosis of alopecia areata (82.6%).Main outcome measuresThe Social Phobia Inventory measured symptoms of social anxiety, and the Hospital Anxiety and Depression Scale was used to measure symptoms of anxiety and depression. Survey questions were designed to measure the use of wigs. Open-ended questions enabled participants to comment on their experiences of wearing wigs.ResultsClinically significant levels of social anxiety (47.5%), anxiety (35.5%) and depression (29%) were reported. Participants who reported worries about not wearing a wig reported significantly higher levels of depression: t(103)=3.40, p≤0.001; anxiety: t(109)=4.80, p≤0.001; and social anxiety: t(294)=3.89, p≤0.001. Wearing wigs was reported as increasing social confidence; however, the concealment it afforded was also reported as both reducing fear of negative evaluation and maintaining anxiety.DiscussionOverall, 46% of participants reported that wearing a wig had a positive impact on their everyday life with negative experiences related to fears of the wig being noticed. Psychological interventions alongside wig provision would be beneficial for people living with alopecia.

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“…The rationale for this change was to prevent one condition dominating the process while maximizing identification of important uncertainties across all conditions studied. The AA PSP outcomes are reported separately …”

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confidence: 99%