Quality of Life and Associated Factors among Patients Diagnosed with Pemphigus Vulgaris Attending Clinic at Kenyatta National Hospital

Abstract

Background: Pemphigus vulgaris (PV) is a rare autoimmune disorder that affects the skin and mucous membranes. Prevalence of PV ranged from 0.38 to 30 per 100,000 people, with more than 50% of these patients having a low quality of life. The visible nature of PV lesions can lead to emotional distress, affecting self-esteem and body image. PV patients may face social isolation due to misunderstandings about the disease's contagiousness. However, the quality of life of these patients has not been exhaustively investigated. Purpose of the study: To determine the quality of life and associated factors among patients diagnosed with pemphigus vulgaris attending the dermatology clinic at Kenyatta National Hospital. Methodology: This was an analytical cross-sectional study utilising quantitative and qualitative approaches conducted at Kenyatta National Hospital. A consecutive sampling technique was used to sample 76 PV patients attending the dermatology clinic. The quality of life was assessed using the Dermatology Life Quality Index (DLQI). A structured questionnaire including these validated tools and patient-specific information such as demographic and clinical characteristics, depression level and quality of life. Descriptive analysis was done where the mean DLQI score was calculated and scores were characterised using the DLQI validated scoring, which was summarised using frequencies and percentages. Student t-test and ANOVA were conducted to investigate differences in DLQI scores based on patient characteristics and presenting symptoms. Significance was assessed at a p-value less than 0.05. Performed using Stata version 17. Thematic analysis was performed, where themes and subthemes were obtained. Conducted using Dedoose v7.1.1. Results: The average age was 47.9±14.2 years, and 69.7% were female. Clinical characteristics revealed that 48.7% had the disease for between 2 – 5 years, and 31.6% had a family history of autoimmune disorders. Common symptoms included blisters (65.8%) and itching (42.1%). Strong social support was seen in 52.6% of the patients. The mean DLQI score for the 76 patients in this study was 13.0 (Standard Deviation [SD] ± 7.7), indicating a medium to high impact of the disease on their quality of life. Further, 26.3%, 34.2% and 22.4% had medium impact, high impact, and very high impact. Female patients, inpatients, social support, duration of disease, current medication, family history, as well as presenting with itching, were associated with a higher impact on their quality of life. There was also limited knowledge of disease and treatment experiences, and emotional coping was a key identified theme. Conclusions and recommendations:  There is a significant impact of PV on patients' quality of life, particularly among females, those on active medication, and those with a family history of autoimmune disorders. Itching exacerbates symptoms, and limited knowledge about PV's autoimmune nature is prevalent. There is a need for patient education on PV’s causes and management.