EndoERN patient survey on their perception of health care experience and of unmet needs for rare endocrine diseases
Por:
Webb, SM, Kristensen, J, Vitali, D, van Klink, S, van Beuzekom, C, Santos, A, Nordenstrom, A
Publicada:
1 mar 2021
Ahead of Print:
1 feb 2021
Resumen:
Patients' perceptions on quality of care and gaps in diagnosis/management of rare endocrine diseases (RED) were collected in a 21-item questionnaire, answered on-line in the patients' language. There were 598 (66% females) responses from 29 countries reflecting pituitary, adrenal, thyroid, parathyroid, gonadal, genetic and autoimmune diseases. While in 36% a diagnosis was made in <1 year, in 28% it took >5 years. In 64% it took 2-7 professionals for a correct diagnosis, after which in >50% a specialist/specific treatment was available within 1 month; 60% were satisfied with current treatment. Most (59-67%) would have liked access to psychological support, social worker, dietician or physiotherapist/rehabilitation specialists. Half were satisfied with information received, treatment and health care follow-up; 87% contacted patient/support groups; 78% agreed that "The personal limitations related to the disease, impact on my everyday quality of life". Conclusion: Diagnostic delay in RED is still unsatisfactory in Europe, as well as specific needs impacting QoL.
Filiaciones:
Webb, SM:
Hosp S Pau, Res Ctr Pituitary Dis, Dept Med Endocrinol, IIB St Pau, Barcelona 08025, Spain
ISCIII, Ctr Invest Biomed Red Enfermedades Raras CIBERER, Unidad 747, Pare Claret 167, Barcelona 08025, Spain
Univ Autonoma Barcelona UAB, Pare Claret 167, Barcelona 08025, Spain
Kristensen, J:
ePAG, Aarhus, Denmark
Danish Addison Patient Assoc, Aarhus, Denmark
Vitali, D:
ePAG, Rome, Italy
Assoc Italiana Displasia Setto Ott & Ipopituitari, Rome, Italy
van Klink, S:
Leiden Univ, Endo ERN Coordinating Ctr, Med Ctr, Leiden, Netherlands
van Beuzekom, C:
Leiden Univ, Endo ERN Coordinating Ctr, Med Ctr, Leiden, Netherlands
Santos, A:
Hosp S Pau, Res Ctr Pituitary Dis, Dept Med Endocrinol, IIB St Pau, Barcelona 08025, Spain
ISCIII, Ctr Invest Biomed Red Enfermedades Raras CIBERER, Unidad 747, Pare Claret 167, Barcelona 08025, Spain
Univ Autonoma Barcelona UAB, Pare Claret 167, Barcelona 08025, Spain
Nordenstrom, A:
Karolinska Univ Hosp, Astrid Lindgren Childrens Hosp, Pediat Endocrinol, S-17176 Stockholm, Sweden
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