The emotional burden of chronic skin disease dominates physical factors among women, adversely affecting quality of life and sexual function

Hassanin, Ahmed Mohamed; Ismail, Nashaat Nabil; Guindi, Ahmed el; Sowailam, Hanan Amin

doi:10.1016/j.jpsychores.2018.10.011

Cited by 10 publications

(8 citation statements)

References 35 publications

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“…Among QoL instruments assessing general health, total and/or component scores were most frequently reported for the adult and child versions of the Dermatology Life Quality Index (DLQI, 53 studies) [ 4 , 13 , 14 , 18 , 19 , 22 , 25 , 33 , 35 – 38 , 45 , 64 , 65 , 67 – 70 , 74 , 77 , 81 – 83 , 87 , 89 , 90 , 92 , 93 , 96 , 99 , 100 , 102 , 104 , 112 , 115 , 119 , 120 , 122 , 123 , 140 , 143 , 144 , 146 , 148 , 151 , 156 , 161 , 162 , 164 – 166 , 168 ], Children’s DLQI (seven studies) [ 24 , 67 , 73 , 101 , 103 , 110 , 152 ], 36-Item Short Form Health Survey (SF-36, eight studies) [ 9 , 82 , 83 , 105 – 107 , 161 , 162 ], General Health Questionnaire (eight studies) [ 14 , 30 , 65 , 93 ...…”

Section: Resultsmentioning

confidence: 99%

“…Fifty studies that reported DLQI mean scores for patients with vitiligo were further examined. Mean scores did not differ vastly by region, but there were trends for higher mean scores (i.e., increased burden of disease) in the Middle East (4.7–14.7) [ 14 , 45 , 64 , 74 , 82 , 83 , 87 , 104 , 112 , 140 , 144 , 164 , 166 ], Southern Asia (4.1–12.4) [ 18 , 22 , 38 , 100 , 120 , 143 , 146 , 168 ], and Eastern Asia (4.0–8.4) [ 35 , 68 – 70 , 119 , 156 , 161 , 162 ] compared with Europe (1.8–8.7) [ 4 , 77 , 89 , 90 , 92 , 93 , 96 , 99 , 102 , 104 , 122 , 123 , 148 ] and North America (5.2–6.6) [ 115 , 151 , 165 ]. The lowest DLQI mean scores were reported in Italy (1.8 [ 89 ] and 4.3 [ 90 ]), Singapore (4.0 [ 69 ] and 4.4 [ 68 ]), and Nepal (4.1 [ 38 ]), whereas the highest DLQI mean scores were reported in Saudi Arabia (14.7 [ 45 ] and 9.0 [ 64 ]) and Egypt (13.0 [ 144 ], 12.4 [ 87 ], 12.2 [ 25 ], and 11.2–11.9 [ 19 ]).…”

Section: Resultsmentioning

confidence: 99%

“…Five studies reported that depression [30,84,85,102,164] and/or anxiety [84,164] scores measured by Beck Inventory scales were not significantly different in patients with vitiligo vs controls. The QoL and/or psychosocial burden of vitiligo was most frequently compared with psoriasis (26 articles) [4,9,27,58,60,76,83,84,87,92,110,111,113,118,123,130,134,136,137,150,154,159,162,173,174], alopecia areata (13 articles) [14,24,58,60,75,76,83,109,118,154,159,173,174], acne (11 articles) [14,58,76,…”

Section: Degree Of Psychosocial Burdenmentioning

confidence: 99%

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Psychosocial Effects of Vitiligo: A Systematic Literature Review

et al. 2021

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Background Patients with vitiligo experience reduced quality of life. Objective To comprehensively describe the available evidence for psychosocial burden in vitiligo. Methods A systematic review of observational studies and clinical trials identified using PubMed, EMBASE, Scopus, and the Cochrane databases was performed through 1 March, 2021, to assess psychosocial comorbidities in vitiligo. Two independent reviewers performed an assessment of articles and extracted data for qualitative synthesis. Results Included studies (N = 168) were published between 1979 and 1 March, 2021; 72.6% were published since 2010. Disorders including or related to depression (41 studies, 0.1-62.3%) and anxiety (20 studies, 1.9-67.9%) were the most commonly reported. The most prevalent psychosocial comorbidities were feelings of stigmatization (eight studies, 17.3-100%), adjustment disorders (12 studies, 4-93.9%), sleep disturbance (seven studies, 4.6-89.0%), relationship difficulties including sexual dysfunction (ten studies, 2.0-81.8%), and avoidance or restriction behavior (12.5-76%). The prevalence of most psychosocial comorbidities was significantly higher vs healthy individuals. Factors associated with a significantly higher burden included female sex, visible or genital lesions, age < 30 years (particularly adolescents), and greater body surface area involvement, among others. The most commonly reported patient coping strategy was lesion concealment. Limitations Available studies were heterogeneous and often had limited details; additionally, publication bias is possible. Conclusions The results of this systematic review show that vitiligo greatly affects psychosocial well-being. The extent of psychosocial comorbidities supports the use of multidisciplinary treatment strategies and education to address the vitiligoassociated burden of disease. Protocol Registration PROSPERO (CRD42020162223).

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Degree Of Psychosocial Burdenmentioning

confidence: 99%

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Psychosocial Effects of Vitiligo: A Systematic Literature Review

et al. 2021

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“…The patients experienced changes over the course of disease development—from the time of the appearance of symptoms, during their diagnosis and treatment, and upon their return to normal life. Health/disease is determined by interactions between the mind, body, and the surrounding environment, and the skin is the interface between the body and the external world [ 17 ]. Classic erythema on the face, discoid lupus rash, lesions with a tendency to scar, skin atrophy, and loss of hair often proved unsightly and lowered a patient’s self-esteem.…”

Section: Resultsmentioning

confidence: 99%

Life course changes provoked by chronic disease: A study on everyday life for patients with systemic lupus erythematosus

Huangfu

2020

International Journal of Nursing Sciences

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Objective This study examined patients with systemic lupus erythematosus (SLE) as a means to explore the impacts of chronic disease on life courses. Methods A semi-structured in-depth interviews were conducted with nine patients in China in 2017; participants were included based on their having or having had facial butterfly erythema. Results The study focused on both the disease’s impact on the patients’ health and on their daily lives. Four core themes emerged: visible changes in the patient’s bodies, social dilemmas, “the encouragement of disease”, and a new perspective on the relationship between disease and health. One important finding was that the occurrence of a chronic disease did not have only negative repercussions; some patients felt that there were advantages to being sick. Chronic disease resulted in a reworking of daily life. The patients developed a self-referential model of healing. Conclusion The distinct interpretations of the same disease offered by different patients served to yield a more complete understanding of the disease. People with SLE adjust their thinking about the disease based on personal feelings as well as experiences and pursue a dialogue on their illness based on the disease pattern unique to them. The meaning that disease had for the patients was not limited to negative connotations.

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“…While central nervous system (CNS) involvement is recognized to interfere with neurohormonal aspects of sexual activity, no studies have assessed the impact of sarcoidosis symptom burden on intimacy. However, fatigue, dyspnea, pain, physical deconditioning, and psychological effects of disease, as extrapolated from other diseases [36], are hypothesized to diminish HRQoL as it relates to seeking and maintaining intimate relationships in sarcoidosis.…”

Section: Familymentioning

confidence: 99%

Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes

et al. 2021

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Health-related quality of life (HRQoL), though rarely considered as a primary endpoint in clinical trials, may be the single outcome reflective of patient priorities when living with a health condition. HRQoL is a multi-dimensional concept that reflects the degree to which a health condition interferes with participation in and fulfillment of important life areas. HRQoL is intended to capture the composite degree of physical, physiologic, psychological, and social impairment resulting from symptom burden, patient-perceived disease severity, and treatment side effects. Diminished HRQoL expectedly correlates to worsening disability and death; but interventions addressing HRQoL are linked to increased survival. Sarcoidosis, being a multi-organ system disease, is associated with a diffuse array of manifestations resulting in multiple symptoms, complications, and medication-related side effects that are linked to reduced HRQoL. Diminished HRQoL in sarcoidosis is related to decreased physical function, pain, significant loss of income, absence from work, and strain on personal relationships. Symptom distress can result clearly from a sarcoidosis manifestation (e.g., ocular pain, breathlessness, cough) but may also be non-specific, such as pain or fatigue. More complex, a single non-specific symptom, e.g., fatigue may be directly sarcoidosis-derived (e.g., inflammatory state, neurologic, hormonal, cardiopulmonary), medication-related (e.g., anemia, sleeplessness, weight gain, sub-clinical infection), or an indirect complication (e.g., sleep apnea, physical deconditioning, depression). Identifying and distinguishing underlying causes of impaired HRQoL provides opportunity for treatment strategies that can greatly impact a patient’s function, well-being, and disease outcomes. Herein, we present a reference manual that describes the current state of knowledge in sarcoidosis-related HRQoL and distinguish between diverse causes of symptom distress and other influences on sarcoidosis-related HRQoL. We provide tools to assess, investigate, and diagnose compromised HRQoL and its influencers. Strategies to address modifiable HRQoL factors through palliation of symptoms and methods to improve the sarcoidosis health profile are outlined; as well as a proposed research agenda in sarcoidosis-related HRQoL.

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The emotional burden of chronic skin disease dominates physical factors among women, adversely affecting quality of life and sexual function

Cited by 10 publications

References 35 publications

Psychosocial Effects of Vitiligo: A Systematic Literature Review

Psychosocial Effects of Vitiligo: A Systematic Literature Review

Life course changes provoked by chronic disease: A study on everyday life for patients with systemic lupus erythematosus

Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes

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