Exploring Coping Strategies for Patients With Hidradenitis Suppurativa

Kirby, Joslyn S.; Sisic, Mia; Tan, Jerry

doi:10.1001/jamadermatol.2016.1942

Cited by 19 publications

(26 citation statements)

References 6 publications

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“…There is limited research on coping in HS but one qualitative study investigated coping mechanisms used in HS. 7 They found that adaptive coping strategies included positive reframing, use of humour and active coping and social support. Negative strategies included behavioural avoidance and isolation.…”

Section: What Are the Clinical Implications Of The Work?mentioning

confidence: 99%

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A qualitative analysis of psychological distress in hidradenitis suppurativa

2019

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Summary Background Hidradenitis suppurativa (HS) can negatively impact on patients’ quality of life and is associated with a higher risk of depression, as well as difficulties in employment and relationships. Objectives This study sought to evaluate the lived experience of psychological distress in HS. Methods Structured interviews were conducted with 12 participants. These were later transcribed and analysed using thematic analysis. The transcripts and analysis were reviewed by an independent researcher. Results The results indicated that there were three main themes: shame, pain and coping mechanisms. Participants indicated that their feelings of shame were due to disgust at their symptoms. They feared that others would be disgusted if their symptoms were obvious. Participants reported feeling invalidated when others did not understand the severity of their pain. Additionally, they reported that pain left them with a sense of powerlessness over their own bodies. Regarding coping mechanisms, adaptive strategies included social support while maladaptive strategies included social withdrawal. Conclusions These findings are discussed in the context of the existing research on shame, chronic pain and psoriasis. The implications for psychological support for individuals with HS are evaluated. Additionally, the limitations of this study are considered and recommendations for future research are given. This study has highlighted that feelings of shame and physical pain are associated with psychological distress in HS. What's already known about this topic? Hidradenitis suppurativa (HS) has been shown to be associated with physical pain, a higher risk of depression, difficulties in sustaining employment and difficulties in relationships. Additionally, studies using quality‐of‐life measures have found more impairment in HS than in other dermatological conditions. What does this study add? Although the research to date has determined that there are negative social and emotional consequences associated with HS, the psychological processes underlying these impairments have not yet been looked at. This study aims to get a deeper understanding of the lived experience of psychological distress in HS and how individuals with HS attempt to manage this distress. What are the clinical implications of the work? This study has identified shame as a key feature that underlies the psychological difficulties experienced as a consequence of HS. When deciding upon appropriate psychological interventions for HS, approaches that specifically focus on reducing feelings of shame should be considered.

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Section: What Are the Clinical Implications Of The Work?mentioning

confidence: 99%

“…The results of the study also indicate that HS affected participants’ employment, with many needing to take sick leave. There is limited research on coping in HS but one qualitative study investigated coping mechanisms used in HS . They found that adaptive coping strategies included positive reframing, use of humour and active coping and social support.…”

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confidence: 99%

A qualitative analysis of psychological distress in hidradenitis suppurativa

2019

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“…Future research should include patient beliefs about what causes HS, as it is one of the most modifiable illness perceptions . Studies could also build on the results of this study and examine coping mechanisms and resilience in patients with HS along with how they might affect health outcomes, which has been touched upon previously . Finally, it will be interesting to see whether the results are replicated when employing dynamic HS scoring systems such as the International Hidradenitis Suppurativa Severity Score System, and how illness perceptions relate to other validated and skin‐specific subjective measures of disease burden such as PRISM (Pictorial Representation of Illness and Self Measure) …”

Section: Discussionmentioning

confidence: 86%

To what extent do disease severity and illness perceptions explain depression, anxiety and quality of life in hidradenitis suppurativa?

et al. 2018

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“…Hidradenitis suppurativa (HS) is a chronic inflammatory disease characterized by painful cysts and nodules developing into discharging sinus tracts with hypertrophic scarring . It has significant morbidity and impact on patient quality of life . Up to one‐third of patients with HS have some degree of familial inheritance, and genetic sequence variants have been identified in both inherited and sporadic cases of HS .…”

Section: Current Phenotype Classifications In Hidradenitis Suppurativmentioning

confidence: 99%

“…3 It has significant morbidity and impact on patient quality of life. 4 Up to one-third of patients with HS have some degree of familial inheritance, 3 and genetic sequence variants have been identified in both inherited and sporadic cases of HS. 3 Inherited forms of HS are considered monogenic in origin.…”

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confidence: 99%

Inter‐rater reliability of phenotypes and exploratory genotype–phenotype analysis in inherited hidradenitis suppurativa

et al. 2019

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Summary Background Genotype–phenotype correlation measures the correlation between the presence of a physical trait with a group of similar mutations but is dependent on reliable phenotyping. It can provide information on disease pathogenesis, future disease progression, severity or activity. Such indicators would be valuable in hidradenitis suppurativa (HS). Objectives To assess inter‐rater reliability (IRR) of HS clinical phenotypes and perform exploratory genotype–phenotype correlation in cases of HS with identified sequence variants. Methods Linkage disequilibrium between variants was assessed. Genotype–phenotype correlations were explored using Spearman correlation coefficients. IRR was calculated using Cohen's κ. Correlation between phenotype classifications was assessed using the χ2 statistic. Results Forty‐three sequence variants with clinical information were identified. Clinical phenotypes were classified as LC2 (n = 29; 67%), scarring folliculitis (n = 18; 42%), atypical (n = 38; 88%) and nodular (n = 26; 60%). LC1 phenotype was associated with regular (χ2 = 41·289, P < 0·001) and typical (χ2 = 29·013, P < 0·001) phenotypes. Cohen's κ was highest for van der Zee and Jemec (0·815), followed by Martorell‐Calatayud et al. (0·813), Naasan and Affleck (0·774) and Canoui‐Poitrine et al. (0·435) classifications. High linkage disequilibrium was seen between variants of Han Chinese pedigrees. No significant genotype–phenotype correlations were identified. Conclusions These findings may be influenced by selection, publication bias and the assumption that HS is a monogenic disorder. The poor IRR of existing phenotype measures suggests limited utility of existing measures. Further investigations into the correlation of clinical phenotypes with inflammatory biomarkers may aid in prognostic efforts for this disease. What's already known about this topic? Genotype–phenotype correlation can provide information regarding disease pathogenesis and predictions for future disease progression, severity or activity. The identification of such indicators in hidradenitis suppurativa (HS) would be valuable for patients and clinicians alike, given the lack of biomarkers or clinical predictors of disease. What does this study add? Sixty‐five sequence variants across 20 separate genes were identified. There was no significant correlation between phenotype classification in four separate classification schema and gene, mutation type or impact on Notch signalling. Utility of current phenotype measurements are limited. The lack of genotype–phenotype correlation in HS is suggestive that the underlying assumption of inherited HS as a monogenic disorder may need revision.

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Exploring Coping Strategies for Patients With Hidradenitis Suppurativa

Cited by 19 publications

References 6 publications

A qualitative analysis of psychological distress in hidradenitis suppurativa

A qualitative analysis of psychological distress in hidradenitis suppurativa

To what extent do disease severity and illness perceptions explain depression, anxiety and quality of life in hidradenitis suppurativa?

Inter‐rater reliability of phenotypes and exploratory genotype–phenotype analysis in inherited hidradenitis suppurativa

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