Endo ERN patient survey on their perception of health care experience and of unmet needs for rare endocrine diseases

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.

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TitleEndo ERN patient survey on their perception of health care experience and of unmet needs for rare endocrine diseases
DateFebruary 5th, 2021
Issue nameEndocrine
Issue number2021(2)
AuthorsWebb SM, Kristensen J, Vitali D, van Klink S, van Beuzekom C, Santos A & Nordenström A
WPsWP4
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