{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T06:11:51Z","timestamp":1778739111140,"version":"3.51.4"},"reference-count":34,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T00:00:00Z","timestamp":1778716800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"\n Background<\/jats:title>\n Epidermolysis Bullosa (EB) is a rare genetic skin disorder requiring long-term intensive care. The disease places considerable economic and caregiving burdens on families, yet factors associated with caregivers\u2019 psychological stress remain inadequately understood.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n \n A cross-sectional questionnaire survey was conducted among families of patients with EB. Statistical analysis was performed at the household level. In families with multiple affected individuals, the youngest patient was selected as the representative case, as Epidermolysis Bullosa is a rare inherited disorder that predominantly manifests in childhood. This approach was adopted to better reflect the caregiving burden associated with early-onset disease. Data were collected through an online questionnaire. The \u03c7\n 2<\/jats:sup>\n test was used for comparisons between groups, and ordered logistic regression analysis was performed to identify independent factors associated with high psychological stress among caregivers.\n <\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n A total of 108 families of patients with EB were included. Children aged \u22646\u202fyears accounted for the largest proportion. Families with multiple patients accounted for 7.41%. In 40.74% of the families, the average annual out-of-pocket medical expenses exceeded 50% of the household annual income. In 24.07% of the families, the average daily caregiving time exceeded 4\u202fh. The mean psychological stress score of caregivers was 3.40, and 43.52% reported high psychological stress (\u22654 points). Univariate analysis showed that economic burden, caregiving time, and availability of nursing supplies were significantly associated with high psychological stress (\n p<\/jats:italic>\n \u202f&lt;\u202f0.05). However, no statistically significant differences were observed in the ordered logistic regression analysis.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusion<\/jats:title>\n Families of patients with EB experience substantial caregiving and financial burdens. In univariate analyses, caregiving time and nursing supply were associated with caregivers\u2019 psychological stress; however, these variables were not independently significant in the multivariable model. The findings suggest the need for improved insurance coverage, caregiver support, and integrated nursing resources.<\/jats:p>\n <\/jats:sec>","DOI":"10.3389\/fpubh.2026.1851720","type":"journal-article","created":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T05:35:25Z","timestamp":1778736925000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Family burden and caregiver psychological stress in epidermolysis bullosa in China: a cross-sectional survey"],"prefix":"10.3389","volume":"14","author":[{"given":"Haoran","family":"Kong","sequence":"first","affiliation":[{"name":"Shandong Medical and Pharmaceutical University","place":["Yantai, China"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yongchong","family":"Chen","sequence":"additional","affiliation":[{"name":"Beijing Fengtai District Traditional Chinese Medicine Hospital (Beijing Fengtai District Nanyuan Hospital)","place":["Beijing, China"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Xinglan","family":"Guo","sequence":"additional","affiliation":[{"name":"Binzhou Healthcare Security Administration","place":["Binzhou, China"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Meixuan","family":"Liu","sequence":"additional","affiliation":[{"name":"Shandong Medical and Pharmaceutical University","place":["Yantai, China"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Meng","family":"Wang","sequence":"additional","affiliation":[{"name":"Binzhou Medical University Hospital","place":["Binzhou, China"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Xiuhong","family":"Yang","sequence":"additional","affiliation":[{"name":"Shandong Medical and Pharmaceutical University","place":["Yantai, China"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1965","published-online":{"date-parts":[[2026,5,14]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"415.e1","DOI":"10.1016\/j.jhsa.2025.10.012","article-title":"Graft-free surgical technique for treating hand deformities and Pseudosyndactyly in patients with epidermolysis bullosa","volume":"51","author":"Zargarbashi","year":"2025","journal-title":"J Hand Surg Am"},{"key":"ref2","doi-asserted-by":"publisher","DOI":"10.1111\/pde.70179","article-title":"Multidisciplinary Management of Epidermolysis Bullosa","author":"Feinstein","year":"2026","journal-title":"Pediatr Dermatol"},{"key":"ref3","volume-title":"Epidermolysis Bullosa Simplex","author":"So","year":"1993"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"1103","DOI":"10.1016\/j.jaad.2014.01.903","article-title":"Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification","volume":"70","author":"Fine","year":"2014","journal-title":"J Am Acad Dermatol"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"442","DOI":"10.1097\/ICO.0000000000001525","article-title":"Ophthalmologic approach in epidermolysis bullosa: a cross-sectional study with phenotype-genotype correlations","volume":"37","author":"Mellado","year":"2018","journal-title":"Cornea"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"70","DOI":"10.2340\/00015555-2781","article-title":"Epidemiology and outcome of squamous cell carcinoma in epidermolysis bullosa in Australia and New Zealand","volume":"98","author":"Kim","year":"2018","journal-title":"Acta Derm Venereol"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"117","DOI":"10.1186\/s13023-016-0489-9","article-title":"Inherited epidermolysis bullosa and squamous cell carcinoma: a systematic review of 117 cases","volume":"11","author":"Montaudi\u00e9","year":"2016","journal-title":"Orphanet J Rare Dis"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"541","DOI":"10.1055\/s-0034-1391308","article-title":"A two-step multidisciplinary approach to treat recurrent esophageal strictures in children with epidermolysis bullosa dystrophica","volume":"47","author":"Vowinkel","year":"2015","journal-title":"Endoscopy"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1016\/j.hcl.2015.01.011","article-title":"Management of complications of congenital hand disorders","volume":"31","author":"Comer","year":"2015","journal-title":"Hand Clin"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"178","DOI":"10.1186\/s12916-014-0178-2","article-title":"Pain care for patients with epidermolysis bullosa: best care practice guidelines","volume":"12","author":"Goldschneider","year":"2014","journal-title":"BMC Med"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"185","DOI":"10.1590\/S0365-05962013000200001","article-title":"Inherited epidermolysis bullosa: clinical and therapeutic aspects","volume":"88","author":"Boeira","year":"2013","journal-title":"An Bras Dermatol"},{"key":"ref12","first-page":"255","article-title":"Inherited epidermolysis bullosa - the spectrum of complications","volume":"19","author":"Murat-Su\u0161i\u0107","year":"2011","journal-title":"Acta Dermatovenerol Croat"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"276","DOI":"10.1016\/j.jpeds.2007.06.039","article-title":"Cause-specific risks of childhood death in inherited epidermolysis bullosa","volume":"152","author":"Fine","year":"2008","journal-title":"J Pediatr"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"122","DOI":"10.1111\/j.1365-2230.2004.01428.x","article-title":"Assessment of mobility, activities and pain in different subtypes of epidermolysis bullosa","volume":"29","author":"Fine","year":"2004","journal-title":"Clin Exp Dermatol"},{"key":"ref15","volume-title":"Epidermolysis bullosa","author":"Khanna","year":"2025"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"e77350","DOI":"10.7759\/cureus.77350","article-title":"Epidermolysis bullosa accompanied by duodenal atresia in an infant: a report of a rare case","volume":"17","author":"Almonla","year":"2025","journal-title":"Cureus"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"701","DOI":"10.1177\/1359105310387954","article-title":"The experiences of young people with epidermolysis bullosa simplex: a qualitative study","volume":"16","author":"Williams","year":"2011","journal-title":"J Health Psychol"},{"key":"ref18","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s13023-019-1279-y","article-title":"The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers","volume":"15","author":"Bruckner","year":"2020","journal-title":"Orphanet J Rare Dis"},{"key":"ref19","doi-asserted-by":"publisher","first-page":"352","DOI":"10.1016\/j.jid.2015.10.050","article-title":"Progress toward treatment and cure of epidermolysis bullosa: summary of the DEBRA International research symposium EB2015","volume":"136","author":"Uitto","year":"2016","journal-title":"J Invest Dermatol"},{"key":"ref20","doi-asserted-by":"publisher","first-page":"39683","DOI":"10.1038\/s41598-025-23223-4","article-title":"The relationship between parental stress, resilience, and quality of life in parents of children with epidermolysis bullosa","volume":"15","author":"Esmaeili","year":"2025","journal-title":"Sci Rep"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"313","DOI":"10.1186\/s13023-022-02462-y","article-title":"Patients' and parents' experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study","volume":"17","author":"Mauritz","year":"2022","journal-title":"Orphanet J Rare Dis"},{"key":"ref22","doi-asserted-by":"publisher","first-page":"e314","DOI":"10.1002\/ski2.314","article-title":"Costs of UK community care for individuals with recessive dystrophic epidermolysis bullosa: findings of the prospective epidermolysis bullosa longitudinal evaluation study","volume":"4","author":"Jeffs","year":"2024","journal-title":"Skin Health Dis"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"1027","DOI":"10.2147\/CCID.S459429","article-title":"Exploring the impact of epidermolysis bullosa on parents and caregivers: a cross-cultural validation of the epidermolysis bullosa burden of disease questionnaire","volume":"17","author":"Alheggi","year":"2024","journal-title":"Clin Cosmet Investig Dermatol"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"758","DOI":"10.1002\/mgg3.315","article-title":"Living with a rare disorder: a systematic review of the qualitative literature","volume":"5","author":"von der Lippe","year":"2017","journal-title":"Mol Genet Genomic Med"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"613","DOI":"10.1111\/j.1365-2133.2012.10993.x","article-title":"The needs of parents with children suffering from lethal epidermolysis bullosa","volume":"167","author":"Yuen","year":"2012","journal-title":"Br J Dermatol"},{"key":"ref26","doi-asserted-by":"publisher","first-page":"545","DOI":"10.1177\/1049732308315110","article-title":"The main problems of parents of a child with epidermolysis bullosa","volume":"18","author":"van Scheppingen","year":"2008","journal-title":"Qual Health Res"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"149","DOI":"10.30476\/ijcbnm.2025.102011.2466","article-title":"Parental caregiving experiences in epidermolysis bullosa: a phenomenological study","volume":"13","author":"Khalili","year":"2025","journal-title":"Int J Community Based Nurs Midwifery"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"329","DOI":"10.1586\/erp.10.28","article-title":"Factors affecting quality of life in epidermolysis bullosa","volume":"10","author":"Pagliarello","year":"2010","journal-title":"Expert Rev Pharmacoecon Outcomes Res"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1007\/s10198-016-0783-4","article-title":"Social\/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe","volume":"17","author":"Angelis","year":"2016","journal-title":"Eur J Health Econ"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"1177","DOI":"10.1111\/bjd.16710","article-title":"Impact of a rare chronic genodermatosis on family daily life: the example of epidermolysis bullosa","volume":"179","author":"Dufresne","year":"2018","journal-title":"Br J Dermatol"},{"key":"ref31","doi-asserted-by":"publisher","first-page":"49","DOI":"10.1016\/j.ijwd.2017.11.004","article-title":"Psychosocial impact of inherited and autoimmune blistering diseases","volume":"4","author":"Jain","year":"2018","journal-title":"Int J Womens Dermatol"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"607","DOI":"10.2340\/00015555-0947","article-title":"Family burden in epidermolysis bullosa is high independent of disease type\/subtype","volume":"90","author":"Tabolli","year":"2010","journal-title":"Acta Derm Venereol"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"e14128","DOI":"10.1111\/hex.14128","article-title":"Epidermolysis bullosa in Spain: a qualitative analysis of its social impact on families with diagnosed minors","volume":"27","author":"Mart\u00ednez-Ripoll","year":"2024","journal-title":"Health Expect"},{"key":"ref34","doi-asserted-by":"publisher","first-page":"869","DOI":"10.1111\/j.1365-2133.2009.09306.x","article-title":"Quality of life in patients with epidermolysis bullosa","volume":"161","author":"Tabolli","year":"2009","journal-title":"Br J Dermatol"}],"container-title":["Frontiers in Public Health"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2026.1851720\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T05:35:29Z","timestamp":1778736929000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2026.1851720\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5,14]]},"references-count":34,"alternative-id":["10.3389\/fpubh.2026.1851720"],"URL":"https:\/\/doi.org\/10.3389\/fpubh.2026.1851720","relation":{},"ISSN":["2296-2565"],"issn-type":[{"value":"2296-2565","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,5,14]]},"article-number":"1851720"}}