Manomy P A, Yenamandra Vamsi K, Dabas Garima, Joshi Poonam, Ambekar Atul, Sreenivas Vishnubhatla, Sharma Vinod K, Vatsa Manju, Ravindran Surya, Sethuraman Gomathy
College of Nursing, All India Institute of Medical Sciences, New Delhi, India.
Department of Dermatology, All India Institute of Medical Sciences, New Delhi, India.
Indian Dermatol Online J. 2021 Mar 2;12(2):276-280. doi: 10.4103/idoj.IDOJ_658_19. eCollection 2021 Mar-Apr.
Epidermolysis bullosa (EB) has profound effect on the subjective distress, family burden, and quality of life (QOL) of the primary caregivers (PCG). Knowledgeable PCG can efficiently manage children with these skin diseases and also improve their QOL.
To assess the subjective distress, family burden, and QOL, to develop and assess the short-term effectiveness of a psycho-dermatological education package (PDEP) for the PCG of children with EB.
In this interventional study, 30 PCG of EB were assessed for subjective distress, family burden, and QOL. PDEP, a structured educational tool explaining the disease and its care and stress management, was developed by the authors for the PCG and administered to them after one month of enrolment. They were reassessed after three months and compared with the baseline assessment scores. For comparison, 37 PCG of CI were also studied.
The mean age (years) of the subjects was 28.7 ± 6.7 for EB and 30.5 ± 4.6 for CI. The mean or median (range) baseline scores for subjective distress, family burden and QOL of PCG ( = 20) of EB were 8.4 ± 7.9, 6.5 (0-30); 28.5 ± 17.5, 24 (7-77) and 12.6 ± 6.7, 11.5 (4-28) and for PCG ( = 14) of CI were 12 ± 4.3, 38.9 ± 16.2 and 17.7 ± 3.6 respectively. The PDEP improved the QOL (p = 0.01), knowledge (p < 0.01) and practices (p < 0.001) for PCG of EB and it improved subjective distress (p < 0.001), QOL (p < 0.01) and knowledge (p < 0.01) for PCG of CI.
PDEP is an effective educational tool in improving the QOL and knowledge of PCG, which in turn provides efficient management and psychological support to children affected with EB and CI. It should, therefore, be routinely used for educating the PCG of children with EB and CI.
大疱性表皮松解症（EB）对主要照料者（PCG）的主观痛苦、家庭负担和生活质量（QOL）有深远影响。知识丰富的PCG能够有效管理患有这些皮肤病的儿童，并改善他们的生活质量。
评估主观痛苦、家庭负担和生活质量，开发并评估针对EB患儿PCG的心理皮肤病学教育套餐（PDEP）的短期效果。
在这项干预性研究中，对30名EB患儿的PCG进行了主观痛苦、家庭负担和生活质量评估。作者为PCG开发了PDEP，这是一种解释疾病及其护理和压力管理的结构化教育工具，在入组一个月后对他们进行了干预。三个月后对他们进行重新评估，并与基线评估分数进行比较。为了进行比较，还研究了37名CI患儿的PCG。
EB组受试者的平均年龄（岁）为28.7±6.7，CI组为30.5±4.6。EB组PCG（n = 20）的主观痛苦、家庭负担和生活质量的平均或中位数（范围）基线分数分别为8.4±7.9，6.5（0 - 30）；28.5±17.5，24（7 - 77）和12.6±6.7，11.5（4 -
