TY - JOUR
T1 - The psychosocial impact of a chronic disease in Ireland
T2 - Burdens and helpful practices for a life with epidermolysis bullosa
AU - Salamon, Gudrun
AU - Field-Werners, Ursula
AU - Strobl, Sophie
AU - Huebl, Vinzenz
AU - Diem, Anja
N1 - Diem: EB House Austria, Department of Dermatology and Allergology, University Hospital of the Paracelsus Medical University, Salzburg, Austria
PY - 2024/6
Y1 - 2024/6
N2 - ObjectiveAlthough Ireland has one of the highest levels of well-being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices.Methods and MeasuresIn a mixed-methods design, a series of standardised questionnaires were combined with open-ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected.ResultsEB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement.ConclusionQuality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements.Patient or Public ContributionThe perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open-ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone.
AB - ObjectiveAlthough Ireland has one of the highest levels of well-being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices.Methods and MeasuresIn a mixed-methods design, a series of standardised questionnaires were combined with open-ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected.ResultsEB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement.ConclusionQuality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements.Patient or Public ContributionThe perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open-ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone.
KW - Burden
KW - Care practices
KW - Epidermolysis bullosa
KW - Health policy implications
KW - Healthcare system
KW - Quality of life
KW - Resources
UR - https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=pmu_pure&SrcAuth=WosAPI&KeyUT=WOS:001251427300001&DestLinkType=FullRecord&DestApp=WOS_CPL
U2 - 10.1111/hex.14088
DO - 10.1111/hex.14088
M3 - Original Article (Journal)
SN - 1369-6513
VL - 27
JO - Health Expectations
JF - Health Expectations
IS - 3
M1 - e14088
ER -