Former Buruli Ulcer Patients' Experiences and Wishes May Serve as a Guide to Further Improve Buruli Ulcer Management

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 co...

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Bibliographic Details
Published in:	PLoS neglected tropical diseases Vol. 10; no. 12; p. e0005261
Main Authors:	Velink, Anita, Woolley, Rebecca J, Phillips, Richard O, Abass, Kabiru M, van der Werf, Tjip S, Agumah, Emmanuel, de Zeeuw, Janine, Klis, Sandor, Stienstra, Ymkje
Format:	Journal Article
Language:	English
Published:	United States Public Library of Science 29-12-2016 Public Library of Science (PLoS)
Subjects:	Adolescent Adult Aged Agreements Anti-Bacterial Agents - adverse effects Anti-Bacterial Agents - therapeutic use Antibiotics Biology and Life Sciences Buruli ulcer Buruli Ulcer - drug therapy Care and treatment Colleges & universities Counseling Data collection Disease prevention Dosage and administration Female Focus Groups Funding Ghana Group dynamics Handicapped accessibility Humans Infections Infectious diseases Internal medicine Interviews as Topic Male Medicine Medicine and Health Sciences Middle Aged Mycobacterium ulcerans Pain Patient Preference Patients Qualitative research Research and Analysis Methods Rifampin Rifampin - adverse effects Rifampin - therapeutic use Risk factors Streptomycin Streptomycin - adverse effects Streptomycin - therapeutic use Surveys and Questionnaires Treatment Outcome Tropical diseases Ulcers Wound healing Young Adult Ghana
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Summary:	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. 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. These findings can be used to improve clinical management and to guide the international research agenda.
Bibliography:	new_version The authors have declared that no competing interests exist. Conceptualization: AV RJW ROP KMA TSvdW EA JdZ SK YS.Data curation: AV RJW EA JdZ SK YS.Formal analysis: AV RJW JdZ SK YS.Funding acquisition: YS.Investigation: AV RJW ROP KMA EA JdZ SK YS.Methodology: AV RJW ROP KMA TSvdW EA JdZ SK YS.Project administration: ROP KMA EA JdZ SK YS.Supervision: ROP KMA TSvdW EA YS.Writing – original draft: AV RJW JdZ SK YS.Writing – review & editing: AV RJW ROP KMA TSvdW EA JdZ SK YS.
ISSN:	1935-2735 1935-2727 1935-2735
DOI:	10.1371/journal.pntd.0005261