Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseases
Webb, S. M 1952- (Institut d'Investigació Biomèdica Sant Pau)
Kristensen, Jette (ePAG & Chair of Danish Addison Patient Association)
Nordenström, Anna (Pediatric Endocrinology)
Vitali, Diana (ePAG & Chair SOD ITALIA - Italian Patients Organization for Septo Optic Dysplasia and other Neuroendocrine Conditions)
Amodru, Vincent (Aix-Marseille Université)
Wiehe, Lenja Katharina (EURORDIS - Rare Diseases Europe)
Bolz-Johnson, Matt (EURORDIS - Rare Diseases Europe)
Universitat Autònoma de Barcelona

Data:	2022
Resum:	Patient journeys are instruments developed by EURORDIS, The Voice of Rare Disease Patients in Europe, to collect patients' experiences; they may identify gaps and areas deserving improvement, as well as elements positively considered by affected persons. As with other patient-reported experiences, they can complete the clinical evaluation and management of a specific disease, improving the often long diagnostic delay, therapy, patient education and access to knowledgeable multidisciplinary teams. This review discusses the utility of such patient-reported experience measures and summarises the experiences of patients with acromegaly, Addison's disease and congenital adrenal hyperplasia from different European countries. Despite rare endocrine diseases being varied and presenting differently, feelings of not having been taken seriously by health professionals, family and friends was a common patient complaint. Empathy and a positive patient-centred environment tend to improve clinical practice by creating a trustworthy and understanding atmosphere, where individual patient needs are considered. Offering access to adequate patient information on their disease, treatments and outcome helps to adapt to living with a chronic disease and what to expect in the future, contemplating the impact of a disease on patients' everyday life, not only clinical outcome but also social, financial, educational, family and leisure issues is desirable; this facilitates more realistic expectancies for patients and can even lead to a reduction in health costs. Patient empowerment with patient-centred approaches to these complex or chronic diseases should be contemplated more and more, not only for the benefit of those affected but also for the entire health system.
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, sempre que no sigui amb finalitats comercials, i sempre que es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	Health perception ; Patient journey ; Addison's disease ; Acromegaly ; Congenital adrenal hyperplasia
Publicat a:	Endocrine Connections, Vol. 11 (october 2022) , ISSN 2049-3614

DOI: 10.1530/EC-22-0385
PMID: 36228311

9 p, 466.6 KB

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Documents de recerca > Documents dels grups de recerca de la UAB > Centres i grups de recerca (producció científica) > Ciències de la salut i biociències > Institut de Recerca Sant Pau
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