Psychological factors related to Buruli ulcer and tuberculosis in Sub-Saharan Africa

We onderzochten de relatie tussen ziektepercepties en hulpzoekgedrag, onder volwassenen die in risicogebieden wonen voor de infectieuze huidaandoening Buruli ulcus uit Benin, en onder tuberculose patiënten uit Nigeria. Ziektepercepties bleken gerelateerd te zijn aan het tijdstip waarop mensen hulp zochten. Mensen die Buruli ulcus als een chronische aandoening zagen, de behandeling effectief vonden, en veel controle ervoeren over hun aandoening hadden een grotere kans om pas in een later stadium hulp te zoeken. Tuberculose patiënten richtten zich vaak eerst tot twee of drie andere behandelvormen voordat ze een gespecialiseerd centrum bezochten. Vertraging was geassocieerd met werkeloosheid en negatieve emoties. Daarnaast werd pijn tijdens de behandeling van Buruli ulcus onderzocht. Hoewel Buruli ulcus beschreven wordt als een pijnloze aandoening, laten klinische observaties zien dat er wel degelijk pijn is. Patiënten werden gevraagd naar hun pijn, en hulpverleners werden geïnterviewd over hun attitudes ten aanzien van pijn. Het bleek dat patiënten een lage pijnscore rapporteerden, en dat pijn afnam over de tijd. Een gedeelte van de patiënten (30%) rapporteerde hoge pijnscores. 2 patiënten kregen pijnmedicatie. Dus, in tegenstelling tot de literatuur, ervaren patiënten wel degelijk pijn. Tot slot werd de psychometrische kwaliteit van twee vragenlijsten onderzocht, namelijk een lijst die depressieve symptomen meet ‘CES-D´ en een lijst die persoonlijke controle meet; de Pearlin mastery schaal. We vonden dat 17 van de 20 items informatief waren in het meten van depressieve symptomen in onze West-Afrikaanse steekproef. 3 items waren minder informatief. Bij de Pearlin mastery schaal waren vier van de zeven items informatief

Assessment and Treatment of Pain during Treatment of Buruli Ulcer

BACKGROUND:Buruli ulcer (BU) is described as a relatively painless condition; however clinical observations reveal that patients do experience pain during their treatment. Knowledge on current pain assessment and treatment in BU is necessary to develop and implement a future guideline on pain management in BU. METHODOLOGY:A mixed methods approach was used, consisting of information retrieved from medical records on prescribed pain medication from Ghana and Benin, and semi-structured interviews with health care personnel (HCP) from Ghana on pain perceptions, assessment and treatment. Medical records (n = 149) of patients treated between 2008 and 2012 were collected between November 2012 and August 2013. Interviews (n = 11) were audio-taped, transcribed verbatim and qualitatively analyzed. PRINCIPAL FINDINGS:In 113 (84%) of the 135 included records, pain medication, mostly simple analgesics, was prescribed. In 48% of the prescriptions, an indication was not documented. HCP reported that advanced BU could be painful, especially after wound care and after a skin graft. They reported not be trained in the assessment of mild pain. Pain recognition was perceived as difficult, as patients were said to suppress or to exaggerate pain, and to have different expectations regarding acceptable pain levels. HCP reported a fear of side effects of pain medication, shortage and irregularities in the supply of pain medication, and time constraints among medical doctors for pain management. CONCLUSIONS:Professionals perceived BU disease as potentially painful, and predominantly focused on severe pain. Our study suggests that pain in BU deserves attention and should be integrated in current treatment

Psychometric Properties of the Participation Scale among Former Buruli Ulcer Patients in Ghana and Benin

Background: Buruli ulcer is a stigmatising disease treated with antibiotics and wound care, and sometimes surgical intervention is necessary. Permanent limitations in daily activities are a common long term consequence. It is unknown to what extent patients perceive problems in participation in social activities. The psychometric properties of the Participation Scale used in other disabling diseases, such as leprosy, was assessed for use in former Buruli ulcer patients. Methods: Former Buruli ulcer patients in Ghana and Benin, their relatives, and healthy community controls were interviewed using the Participation Scale, Buruli Ulcer Functional Limitation Score, and the Explanatory Model Interview Catalogue to measure stigma. The Participation Scale was tested for the following psychometric properties: discrimination, floor and ceiling effects, internal consistency, inter-item correlation, item-total correlation and construct validity. Results: In total 386 participants (143 former Buruli ulcer patients with their relatives (137) and 106 community controls) were included in the study. The Participation Scale displayed good discrimination between former Buruli ulcer patients and healthy community controls. No floor and ceiling effects were found. Internal consistency (Cronbach's alpha) was 0.88. In Ghana, mean inter-item correlation of 0.29 and item-total correlations ranging from 0.10 to 0.69 were found while in Benin, a mean inter-item correlation of 0.28 was reported with item-total correlations ranging from 20.08 to 0.79. With respect to construct validity, 4 out of 6 hypotheses were not rejected, though correlations between various constructs differed between countries. Conclusion: The results indicate the Participation Scale has acceptable psychometric properties and can be used for Buruli ulcer patients in Ghana and Benin. Future studies can use this Participation Scale to evaluate the long term restrictions in participation in daily social activities of former BU patients

Assessment and Treatment of Pain during Treatment of Buruli Ulcer Citation for published version (APA): Assessment and Treatment of Pain during Treatment of Buruli Ulcer

Abstract Backgroun

Pain Associated with Wound Care Treatment among Buruli Ulcer Patients from Ghana and Benin

Buruli ulcer (BU) is a necrotizing skin disease caused by Mycobacterium ulcerans. People living in remote areas in tropical Sub Saharan Africa are mostly affected. Wound care is an important component of BU management; this often needs to be extended for months after the initial antibiotic treatment. BU is reported in the literature as being painless, however clinical observations revealed that some patients experienced pain during wound care. This was the first study on pain intensity during and after wound care in BU patients and factors associated with pain. In Ghana and Benin, 52 BU patients above 5 years of age and their relatives were included between December 2012 and May 2014. Information on pain intensity during and after wound care was obtained during two consecutive weeks using theWong-Baker Pain Scale. Median pain intensity during wound care was in the lower range (Mdn = 2, CV = 1), but severe pain (score > 6) was reported in nearly 30% of the patients. Nevertheless, only one patient received pain medication. Pain declined over time to low scores 2 hours after treatment. Factors associated with higher self-reported pain scores were; male gender, fear prior to treatment, pain during the night prior to treatment, and pain caused by cleaning the wound. The general idea that BU is painless is incorrect for the wound care procedure. This procedural pain deserves attention and appropriate intervention

Model with level 1 and 2 factors potentially related to pre-hospital delay.

<p>Model with level 1 and 2 factors potentially related to pre-hospital delay.</p

Skin pictures (WHO) shown to respondents to estimate pre-hospital delay.

<p>^a From The Lancet, 354, Tjip S Van der Werf, Winette TA Van der Graaf, Jordan W Tappero, Kingsley Asiedu, Mycobacterium ulcerans infection, 1013–1018, 1999 <a href="http://www.plosntds.org/article/info:doi/10.1371/journal.pntd.0002014#pntd.0002014-vanderWerf1" target="_blank">[39]</a>.</p

Sample characteristics.

<p>Sample characteristics.</p