Difficulties in the diagnosis and treatment of rare diseases according to the perceptions of patients, relatives and health care professionals
Clinics
;
73: e68, 2018. tab
Article
Dans Anglais
| LILACS
| ID: biblio-890768
ABSTRACT
OBJECTIVES:
The aim of this study is to present a survey of vulnerabilities and to suggest approaches for the treatment of rare diseases according to the perceptions of a group of affected individuals, patient association representatives and health care professionals.METHODS:
The focus group technique was used in interviews with patients and primary caregivers, patient support groups/non-governmental organizations, primary health care professionals and physician specialists.RESULTS:
The transcript analysis focused on thematic units, which were tailored to each group and allowed comparisons in search of concordant views. Unanimity was observed in relation to the physical, emotional and social damage to the life standards of the affected individuals and their families as a result of illness. The Brazilian health system was unanimously classified as inadequate to respond to the needs of patients with rare diseases, and this inadequacy led to unpleasant experiences, such as the seemingly endless referrals among health services to reach a final diagnosis and develop a treatment plan.CONCLUSIONS:
The complex set of health system requirements necessary to support the care of patients with rare diseases represents an obstacle to successfully meeting the needs of patients and their families. Therefore, it is important to develop specific public policies to create referral services, guarantee access to appropriate therapeutic modalities and incorporate technologies that promote research for developing new, affordable therapies.
Texte intégral:
Disponible
Indice:
LILAS (Amériques)
Sujet Principal:
Aidants
/
Personnel de santé
/
Maladies rares
Type d'étude:
Etude diagnostique
/
Guide de pratique
/
Étude observationnelle
/
Étude de prévalence
/
Recherche qualitative
/
Facteurs de risque
Limites du sujet:
Humains
Pays comme sujet:
Amérique du Sud
/
Brésil
langue:
Anglais
Texte intégral:
Clinics
Thème du journal:
Médicament
Année:
2018
Type:
Article
Pays d'affiliation:
Brésil
Institution/Pays d'affiliation:
Universidade de São Paulo/BR
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