Open AccessFormer Buruli Ulcer Patients’ Experiences and Wishes May Serve as a Guide to Further Improve Buruli Ulcer Management
Author(s) -
Anita Velink,
Rebecca J. Woolley,
Richard Odame Phillips,
Kabiru Mohammed Abass,
Tjip S. van der Werf,
Emmanuel Agumah,
Janine de Zeeuw,
Sandor Klis,
Ymkje Stienstra
Publication year - 2016
Publication title -
plos neglected tropical diseases
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.99
H-Index - 135
eISSN - 1935-2735
pISSN - 1935-2727
DOI - 10.1371/journal.pntd.0005261
Subject(s) - buruli ulcer , mycobacterium ulcerans , medicine , focus group , family medicine , skin ulcer , health care , rifampicin , qualitative research , surgery , physical therapy , disease , tuberculosis , pathology , business , social science , marketing , sociology , economics , economic growth
Background Buruli ulcer (BU), caused by Mycobacterium ulcerans , is a neglected tropical disease frequently leading to permanent disabilities. The ulcers are treated with rifampicin and streptomycin, wound care and, if necessary surgical intervention. Professionals have exclusively shaped the research agenda concerning management and control, while patients’ perspective on priorities and preferences have not explicitly been explored or addressed. Methodology/Principal findings To get insight into patient perception of the management and control of Buruli ulcer a mixed methods research design was applied with a questionnaire and focus group discussions among former BU patients. Data collection was obtained in collaboration with a local team of native speakers in Ghana. A questionnaire was completed by 60 former patients and four focus group discussions were conducted with eight participants per group. Former patients positively evaluated both the effectiveness of the treatment and the financial contribution received for the travel costs to the hospitals. Pain experienced during treatment procedures, in particular wound care and the streptomycin injections, and the side-effects of the treatment were negatively evaluated. Former patients considered the development of preventive measures and knowledge on the transmission as priorities. Additionally, former patients asked for improved accessibility of health services, counselling and economic support. Conclusions These findings can be used to improve clinical management and to guide the international research agenda.