Autoimmune Bullous Disease Quality of Life (ABQoL) questionnaire: Validation of the translated Persian version in pemphigus vulgaris

Teimourpour, Amir; Hedayat, Kowsar; Salarvand, Fereshteh; Ghandi, Narges; Ghiasi, Maryam; Mahmoudi, Hamidreza; Balighi, Kamran; Toosi, Roja; Mohebi, Farnam; Nili, Ali; Daneshpazhooh, Maryam; Murrell, Dédée F.; Chams‐Davatchi, Cheyda

doi:10.1016/j.ijwd.2020.03.043

Cited by 14 publications

(11 citation statements)

References 18 publications

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“…At the time of the study (2015–2016), we were using either ABSIS or the Pemphigus Disease Area Index for research purposes, but because there was a subjective component in ABSIS we used this score in our study. Moreover, the Persian version of Autoimmune Bullous Disease QoL that was published recently ( Teimourpour et al, 2020 ) has not been validated yet.…”

Section: Discussionmentioning

confidence: 99%

Family impact of pemphigus disease in an Iranian population using the Family Dermatology Life Quality Index

Ghodsi

Asadi

Ghandi

et al. 2020

International Journal of Women's Dermatology

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Background Pemphigus vulgaris (PV) is a rare but seriously disabling disorder of the skin and mucous membranes that can gravely impact the quality of life (QoL) of patients. Objective The aim of the present study was to identify how family members of patients with PV are affected by the disease. Methods A total of 118 patients with confirmed PV and one of their family members (caregivers) were enrolled in the study. To calculate disease severity, the Autoimmune Bullous Skin Disorder Intensity Score was used. The Persian version of the Dermatology Life Quality Index (DLQI) questionnaire was used to evaluate the QoL of patients and the Family Dermatology Life Quality Index (FDLQI) to evaluate the QoL of caregivers. Results The mean age of patients was 43.14 ± 12.5 years. Ninety patients (76.3%) were female. Eighty-one patients (68.6%) had the mucocutaneous phenotype and 37 cases (31.4%) the mucosal phenotype. The DLQI score was 10.1 ± 7.1 for patients. The DLQI score was higher for patients with the mucocutaneous phenotype (11.8 ± 7.5) than those with the mucosal phenotype (6.4 ± 4.9; p < .001). QoL was significantly affected by disease severity. FDLQI score was 13 ± 7 for caregivers, and was significantly higher in older caregivers and married ones. There was a positive correlation between patients’ admission frequencies and FDLQI score. FDLQI score was also significantly affected by the Autoimmune Bullous Skin Disorder Intensity Score of patients’ disease severity. The QoL of patients and their caregivers showed a significant positive correlation. Conclusion The QoL of patients and their families are impaired significantly, and is considerably prominent in the mucocutaneous phenotype of PV and more severe forms. Limitation Pemphigus Disease Area Index (PDAI) and Autoimmune Bullous Disease QoL (ABQoL) were not used in this study.

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Section: Discussionmentioning

confidence: 99%

Family impact of pemphigus disease in an Iranian population using the Family Dermatology Life Quality Index

Ghodsi

Asadi

Ghandi

et al. 2020

International Journal of Women's Dermatology

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“…The score of the disease severity [according to pemphigus disease area index (PDAI) criteria], 17 the level of patients' satisfaction with the treatment according to visual scale, quality of life according to the validated Persian “Autoimmune Bullous Disease Quality of Life (ABQoL)” questionnaire, 19,20 the surface area of the lesions at the beginning of the study, 15th day, 1 month, 3, and 6 months later were assessed. The diameter of the lesions was measured using a ruler.…”

Section: Methodsmentioning

confidence: 99%

Intralesional injection of biosimilar rituximab in recalcitrant mucocutaneous lesions of patients with pemphigus vulgaris: A pilot study

Mazloom

Daneshpazhooh

Shoormasti

et al. 2020

Dermatologic Therapy

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The efficacy of intravenous rituximab (RTX) in patients with pemphigus have been shown in the previous studies. The study aimed to investigate the effectiveness of intralesional injection of RTX in the healing of pemphigus lesions, with lower doses and probable better safety profile than intravenous RTX. Eleven Pemphigus patients with recalcitrant lesions received two intralesional injections of biosimilar RTX, 5 mg/cm 2. During 6 months follow-up, Pemphigus Disease Area Index, the patients' satisfaction, quality of life, the disease activity, the number and size of lesions, the anti-desmoglein (Dsg) 1 and 3 antibodies and the count of CD4+ and CD19+ cells were assessed. All patients were in partial remission on therapy. The absolute count of CD19+ B cells showed a statistically significant decline (P = .006). The percentage of CD4 + T lymphocytes increased 2 weeks after injection and decreased 2 weeks later (P = .01). The average number and size of lesions decreased. The concentration of anti-Dsg 3 antibody decreased insignificantly during the study. The severe pain during the injection was considered as the main complication. At the end of the study, two patients were in complete remission on therapy, and the other nine remained in partial remission on therapy. Few side effects resulting from intralesional injection of RTX and enhanced quality of life of the patients were considered as the valuable achievements of this study. The results showed that although a low dose of RTX leads to a significant decrease of CD19+ B lymphocytes, it did not show parallel clinical effectiveness.

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“…It is specifically used to assess patients suffering from epidermolysis bullosa (EB). 24 Also validated in Dutch, 26 Farsi, 65 and Portuguese. 25 Numeric score between 0-51.…”

Section: Treatment Of Autoimmunementioning

confidence: 99%

Patient Quality of Life Improvement in Bullous Disease: A Review of Primary Literature and Considerations for the Clinician

Padniewski

Shaver

Schultz

et al. 2022

CCID

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Autoimmune and inherited bullous disorders are rare skin diseases that may have a profound negative impact on quality of life (QOL). Common symptoms include pain, pruritus, and scarring, and complications may result in the loss of the ability to perform daily tasks. Diagnosis may have a negative psychological impact, and ongoing management may require a significant allocation of time and resources by both patients and providers. To provide patient-centered care, consideration of these factors is of utmost importance for the dermatologist treating patients with bullous disorders. Herein, we present a review of the primary literature evaluating QOL in autoimmune and inherited bullous disorders, including pemphigus, pemphigoid, epidermolysis bullosa, and Hailey-Hailey disease.

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Autoimmune Bullous Disease Quality of Life (ABQoL) questionnaire: Validation of the translated Persian version in pemphigus vulgaris

Cited by 14 publications

References 18 publications

Family impact of pemphigus disease in an Iranian population using the Family Dermatology Life Quality Index

Family impact of pemphigus disease in an Iranian population using the Family Dermatology Life Quality Index

Intralesional injection of biosimilar rituximab in recalcitrant mucocutaneous lesions of patients with pemphigus vulgaris: A pilot study

Patient Quality of Life Improvement in Bullous Disease: A Review of Primary Literature and Considerations for the Clinician

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