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The patient perspective of the diagnostic process for leprosy in Brazil. An exploratory study

Abstract

Objectives: To explore the patient experience of being diagnosed with leprosy

and the support provided during this process in selected populations in Brazil.

To understand the information needs of patients during diagnosis. To identify

characteristics of patients with different diagnostic experiences. To add to the

evidence base used for improving the diagnostic process for leprosy patients.

Design: A self-constructed questionnaire delivered to 116 participants, at three

leprosy health centres, across three states in Brazil.

Results: Most participants felt under-informed during diagnosis; 68·1% wanted

more information about leprosy. Nearly one-quarter of patients reported feeling

unable to ask questions at diagnosis. Almost half of patients reported being worried

about treatment, yet 43·3% reported not having the chance to talk about their

concerns. Younger participants were significantly more likely to report feeling unable

to ask questions and talk about their worries. The majority of participants (59·5%)

reported not being given any written information to take away with them. 36·5%

reported not being given advice about how to reduce the chance of other family

members becoming ill with leprosy. Older males were most likely to be given this

advice despite females being in most contact with family members in most cultures.

Conclusions: It is recommended that patients are encouraged to ask questions and

invited to talk about their concerns, particularly younger patients. It is recommended

that a simple information leaflet be provided to all patients. These suggestions may

require some financial input, more staff and longer consultations but should

significantly improve the diagnostic process.

More information

Type
Journal Article
Author
Teasdale K
Wildt G
Das PK
Cunha Lopes Virmond M
De Almeida Galan NG
Prada RBR
Henry M
Amar H