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