University of Groningen Buruli ulcer in West Africa de ... · The story of Codjo and his sister touch upon the main themes addressed in this thesis. In this thesis pain related to

University of Groningen

Buruli ulcer in West Africade Zeeuw, Janine

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Publication date:2016

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Citation for published version (APA):de Zeeuw, J. (2016). Buruli ulcer in West Africa: suffering beyond the wound. [Groningen]: University ofGroningen.

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Introduction on Buruli ulcer - a neglected tropical disease

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Introduction on Buruli ulcer - a neglected tropical disease Codjo, 10 years of age, lives in a remote area in Benin. In this district, Buruli ulcer is highly endemic. Some months ago Codjo fell ill with Buruli ulcer and visited a traditional healer without sufficient result. Some weeks ago he went to a specialized Buruli ulcer treatment center and currently he is treated with antimicrobial therapy. He suffers from painful wound dressing changes and wonders if pain medication can relieve his pain. At this point in time, his physician doubts the effect of the antimicrobial therapy as his lesion has become larger. Codjo his sister suffered from Buruli ulcer last year and struggles with limitations in daily activities such as fetching water from the pump. Moreover she sometimes feels people avoid her, and discourage her from visiting traditional festivals in the village. They both acknowledge that they should have gone to the hospital earlier for medical treatment.

The story of Codjo and his sister touch upon the main themes addressed in this thesis. In this thesis pain related to Buruli ulcer (BU) and practices to identify and relieve pain are addressed, as well as the potential value of neopterin in detecting paradoxical reactions, social disabilities former patients experience and the referral system of BU patients to specialized BU treatment centers. Management of BU patients should include an array of interventions and to address patients’ needs, a perspective in which medical, psychological and social aspects, should be taken into account.

The history of Buruli ulcer BU is categorized by the World Health Organization (WHO) as one of the neglected tropical diseases [1]. It is the third most common mycobacterial infection in immuno-competent humans globally, after tuberculosis and leprosy [2]. At the end of the nineteenth century, BU was first described by Albert Cook, describing skin ulcers consistent with BU. In 1948, BU was related to its causative agent, Mycobacterium ulcerans, by Peter MacCallum and his colleagues in Australia [3, 4]. In the 1960s, large numbers of cases were described in the Buruli County, near the Nile River in Uganda, giving rise to the name BU [5]. Over the past decade, a growing number of cases have emerged [6]. To stress the importance of BU control and to understand this ‘mysterious’ condition, the WHO organized the first international meeting on BU in Côte d’Ivoire in July 1998. This resulted in the Yamoussoukro Declaration on BU [7]. In May 2004, a resolution was adopted on increasing surveillance and control of BU and member states were encouraged to develop tools to diagnose, treat and prevent BU [8]. Buruli ulcer prevalence Today, BU has been reported in over 30 countries worldwide, mainly with humid tropical and subtropical climates. Although the number of cases has dropped [6], in West Africa still high number of cases are reported, especially in Côte d’Ivoire, Benin and Ghana [9]. In Benin, prevalence rates between 5.4 and 60.7 per 10.000 inhabitants have been reported [10], and in Ghana, prevalence rates have fluctuated between 2.0 and 15.0 per 10.000 inhabitants [11]. BU affects all ages, but especially children are likely to become infected [12].


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Causative agent, clinical manifestation and treatment BU is caused by infection with Mycobacterium ulcerans, an environmental bacterium, producing mycolactone, a toxin responsible for the extensive tissue necrosis and immunosuppression [13]. The cytotoxicity of mycolactone towards the immune cells causes immunosuppression, and eventually the pathogenicity [13]. Mycolactone molecules interfere with the cytoskeleton of immune competent and other cells by attacking the Wiskott-Aldrich proteins [14-16]. Infection usually starts as a nodule (Figure 1), or a plaque (Figure 2), sometimes accompanied with edema, developing into deep ulcers (Figure 3) with typical undermined edges surrounding the ulcer in later stages [17]. The treatment of BU entails antimicrobial treatment (8 weeks of oral rifampicin and intramuscular streptomycin), supplemented with surgical intervention if required, wound care, and Prevention of Disability [18, 19]. Effective antimicrobial therapy became available in 2005, and has shown being safe and effective to manage small lesions (< 10 cm, cross-sectional diameter) [20].

Figure 1, a nodule

Figure 2, plaque

Figure 3, an ulcer

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Pain associated with wound care treatmentIn literature BU is described as a painless condition, despite the large ulcers [21-23]. Previous studies suggested analgesia is caused by mycolactone either damaging nerves or causing hyperpolarisation of neurons [21, 23]. In contrast studies described patients reporting painful ulcers [24-26], and clinical observations indicated painful wound dressings for at least some of the patients affected by BU. Especially the removal of the soiled dressing and cleaning of the wound seemed to be painful. Pain during wound care dressings negatively influences the healing process [27] and might negatively shape people’s ideas regarding treatment, possibly impacting health care seeking behaviour. Wound care is a major aspect of BU treatment and is performed varying from daily to thrice a week by a trained nurse, either in a hospital or in a health care center [28]. The wound dressing procedure consists of three stages, firstly, removal of the soiled dressing, secondly, cleaning of the wound with normal saline and if required debridement, and lastly, redressing of the wound. Wound care is essential for protection to enable healing of the wound; and it potentially reduces environmental infections of the wound and hospitalization duration [29]. Pain can be distinguished in background pain, breakthrough pain or procedural pain. The latter is pain associated with invasive procedures, wound cleansings and dressings, and physiotherapy [30]. Clinical features of pain involve: location, intensity, duration and quality [31]. The International Association for the Study of Pain defines pain as: ‘An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.’

The function of pain is to protect the body against tissue damage. Nociceptive stimulation activates free nerve endings initiating a cascade of events such as the release of various substances inducing an immune response [32]. The afferent A-δ and C-fibers transmit nociceptive signals to the secondary neurons, located in zones of the dorsal horn, the lamina of the spinal cord. These secondary neurons further transmit signals to thalamic nociceptive neurons and specific nuclei of the brainstem using different pathways. In the cortex the nociceptive stimulus is perceived [32]. Pain is a personal experience covering the sensation of pain along with an automatic reactive response and the association with cognitive and psychological processes. The interpretation of pain is influenced by former experiences, emotional, somatic, and cognitive factors. For example, it has been discribed that anticipatory fear and anxiety increases pain experiences [33], and cultural beliefs might shape response behaviours and attitudes on pain [34], and might affect pain perception determining interpretation of pain and the reaction towards it [35]. A common reaction found in various cultures is the denial of physical pain and the stoic reaction towards pain [36-39]. Most commonly used approaches to measure pain are self report; observational or behavioral; and psychological [40]. Ideally, self-report measures are used to obtain pain measures to capture the subjectivity of the pain experience not directly observable to others [40]. Among children, faces scales are generally preferred, of which the Faces Pain Scale-Revised, the Oucher pain scale, and Wong-Baker Faces Pain Rating Scale (WBS) have been most widely used and extensively validated [41]. in this thesis the WBS was selected, as health care professionals involved in BU treatment centers in Ghana favoured this instrument. The WBS has undergone extensive psychometric testing of the validity and reliability, and children reported no difficulties with rating their pain using this instrument [41].


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Current pain practices in Buruli ulcer treatmentGiven the fact that BU has always been described as a painless condition, little is known on the practices regarding pain in specialized treatment centers. In general, pain is undertreated in poor-resource countries [42] and the WHO has stressed the need to integrate pain treatment in daily practice using guidelines for pain management [43]. In this thesis, pain management and pain practices are used synonymously and refer to the assessment and treatment of pain, including pharmaceutical and non- pharmaceutical aspects. One of the most adhered guideline in prescribing pain medication is the WHO pain ladder consisting of three steps of drugs with increasing analgesic effects [44] recommended for pain relief in wound pain [45]. Previous studies show that perceptions, attitudes and beliefs of health professionals are important in pain practices. A review on challenges in effective pediatric pain management in sub-Saharan Africa showed barriers related to the availability of- and access to analgesics, a lack of education and information among various health workers, and legal barriers such as regulatory restrictions on opiates [46]. Furthermore, attitudinal barriers and cultural differences between patients and health professionals play a role, as was illustrated in a study among 28 emergency department nurses from Central Africa. The study showed that a fear of addiction to opioids, the view that taking medication for pain is a sign of weakness, and the belief that pain relief could interfere with healing, influenced pain management [47]. Paradoxical reactionsPatients indicated to experience pain on the lesion site just before and after ulceration [26]. Concurrent a paradoxical reaction, which is a sudden deterioration after initial improvement in response to antimicrobial treatment might have occurred [26, 48, 49]. Paradoxical reactions have been associated with tuberculosis [50-52], and reversal reactions with leprosy [53]. Paradoxical reactions are proposed to occur due to killing of the organism along with a reduction in mycolactone which allows an intense immunological response [49]. Such a reaction can easily be mistaken for treatment failure unnecessarily leaving medical doctors with the decision to perform surgical intervention to remove necrotic tissue and the bacilli. Neopterin is an indicator of activated cellular immunity [54] and appeared to have promising value to function as a biomarker to monitor leprosy patients during treatment, along with the occurrence of paradoxical reactions [55, 56]. Neopterin is one of the cytokines secreted by monocytes, macrophages, dendritic cells, under the control of T-lymphocytes and Natural killer cells releasing interferon-γ and tumor necrosis factor [54]. International Classification of Functioning and HealthThe majority of BU patients still report with advanced disease stages to the specialised treatment centers [57] and are more likely to develop disabilities [58] (Figure 4). Historically, disabilities were expressed in terms of problems at body levels using a ‘medical lense’. Over the past years the emphasis has shifted from medical aspects to more complex forms of disabilities using a ‘social lens’, acknowledging the crucial role of society.

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Impairment

Contextual factors

Functioning

RestrictionsLimitations

Health Condition

Body functions & Structures

Activity Participation

Environmental factors Personal factors

Figure 4, a disability

Disabilities might be envisioned using the International Classification of Function, Disability and Health (ICF) launched in 2001 by the WHO building on an existing framework. Worldwide, the model serves to ‘provide a scientific basis for understanding and studying health and health-related states, outcomes and determinants [59]. This model is widely applied and uses a biopsychosocial approach, meaning that it integrates a medical and social model. The ICF consists of three main components which are a health condition, functioning and contextual factors, graphically represented in Figure 5. In this model functioning in society is an interaction between a health condition and contextual factors. Functioning consists of three different interrelated components, namely body functions & structures, activity, and participation [59, 60]. Body functions and structures imply the physiological functions and anatomical parts of the body. Activity refers to the tasks or actions performed by an individual while participation means to what extent an individual is involved in certain life situations. The contextual factors include environmental and personal factors. Environmental factors refer to the environment an individual lives in such as the physical and social environment whereas, personal factors entail individual characteristics such as sex, age, profession, social status, and education [59, 60].

Figure 5, International Classification of Functioning, Disability and Health


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A health condition relates to the presence of a disease, disorder or injury which might negatively impact functioning and causes disabilities. The definition of disabilities as used in the ICF adhered to in this thesis is: ‘a difficulty in functioning at the body, person or societal level in one or more life domains, as experience by an individual with a health condition in interaction with contextual factors’[61]. A disability might occur at body level (impairments), personal level (activity limitations), and at social level (participation restrictions). Impairments are defined as ‘problems in body function or structure such as significant deviation or loss’, activity limitations are defined as ‘difficulties an individual may have in executing activities’, and participation restrictions are defined as ‘problems an individual may experience in involvement in life situations’ [59]. In other words, a person facing a health condition is facing a reduced range of motion or sensory loss, and otherwise can experience difficulties in walking, or is affected in attending social gatherings in the community.

Buruli ulcer related disabilitiesWhen looking at BU related disabilities, studies have described contractures, deformities, and limited movements of joints as a consequence of soft tissue destruction, including tendons, and joints. In Ghana, 27% of the former patients, experienced a reduced range of motion and 22% encountered a BU related functional limitation in daily life [62]. Disabilities at the personal level have also been described in Benin as functional limitations which remained a major problem for almost half of the treated patients irrespective of treatment [58]. More recently, a large cohort study showed that in former afflicted patients, 22% had permanent functional problems [63]. When looking at the stigma attached to BU, it has been described that cultural beliefs on the mode of transmission and not having proper treatment are the most important elements of stigma related to BU [64, 65]. Stigma attached to a health condition is considered to be as devastating as the disease per see [66] and has major implications on psychosocial aspects of life [67] including on participation in society [68].

Participation restrictionsParticipation restrictions occur in nine life domains, namely learning and applying knowledge, general tasks and demands, communication, mobility, self-care, domestic life, interpersonal interactions and relationships, major life areas, and community, social and civic life [60]. In Ghana, people felt restricted in employment, education and training, mobility, and helping and supporting other people [69]. Furthermore, in India, restrictions were predominantly encountered restrictions related to employment [70]. In Nigeria, most reported restrictions were related to employment, domestic life and interpersonal relations [71]. Visible signs of a health condition, severity of impairments, but also severity of activity limitations might aggravate the severity of participation restrictions [72, 73]. The confusion on conceptualisation of participation restrictions remains an obstacle [74, 75] resulting in numerous instruments that have been developed [76-79]. When searching for an instrument to assess participation restrictions suitable for the West African context, the Participation Scale (P-scale) (appendix 1) showed most promising value [80]. The P-scale was developed and validated among people with disability related conditions or other stigmatising conditions aged 15 years or older in Brazil, Nepal and India [80]. To date, the P-scale has been predominantly used in low-and middle income countries [70-73, 81-89], shows acceptable

Introduction on Buruli ulcer - a neglected tropical disease1


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psychometric properties [70, 72, 80, 88], is generic, and is relatively easy to administrate by local health care personnel [80]. It is recommended to explore the quality of P-scale in a new cultural context. In literature, several definitions are given for various concepts in psychometric properties; in this thesis the definitions as proposed in de Vet et al. (2011) are used [90].

Buruli ulcer controlIn order to reduce disabilities, the mainstay of BU control entails early case detection by active case finding and health education, and early medical treatment. The WHO has developed a system to classify lesion sizes which is commonly used to measure early disease presentation. This system classifies lesions as category I: lesions cross-sectional diameter of less than 5 cm; as category II: lesions of 5-15 cm and category III: lesions of >15 cm; category III also includes lesions on important sites (for example eyes) and multiple lesions. Despite extensive efforts, only 32 % of the patients report to the hospital with Cat I lesions. There are suggestions that community health volunteers can play a vital role in early case detection [91, 92] but further exploration is required [93]. Currently, key activities of community health workers are to actively screen community members in households, schools, and churches and to refer suspected cases.


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Thesis outline The aim of the thesis is to explore pain related to BU and current pain practices, social disabiity the psychosocial impact of BU, the value of neopterin to detect paradoxical reactions and the role of various actors in BU control. In the patient history, the story of Codjo reflects the problem that patients might experience pain during wound dressing changes and chapter 2 describes pain experiences during wound care treatment. Furthermore it is unclear how current pain management is organised in specialized treatment centers as indicated by the story of Codjo; Codjo suffers from painful wound dressing changes and wonders if pain medication can relieve his pain. Chapter 3 provides insights in current pain management in BU treatment and chapter 4 addresses the topics discussed during a multidisciplinary workshop on pain management and proposes a guide to identify and treat pain. Another topic addressed in this thesis is the detection of paradoxical reactions as physicians might perform surgery while a patient shows a paradoxical reaction, requiring a biomarker that could aid in decision making regarding surgery. Unnecessary surgery might put people at risk for other infections and development of disabilities. As described in the story of Codjo, Codjo his physician doubts the effect of the antimicrobial therapy as his lesion has become larger. Chapter 5 provides insight in the potential value of neopterin to detect paradoxical reactions. Furthermore this thesis addresses social participation restrictions among former BU patients after medical treatment. When looking at the story of Codjo his sister as described in the casus it is possible that patients might experience participation restrictions in social life. Codjo his sister suffered from BU last year and struggles with limitations in daily activities such as fetching water from the pump. Moreover she sometimes feels people avoid her, and discourage her from visiting traditional festivals in the village. Chapter 6 explores the proportion of former BU patients experiencing participation restrictions and provides insights in predictors of these restrictions. Chapter 7 explores the quality of the P-scale in a new cultural context describing the analysis regarding psychometric properties. Finally, detecting patients with early lesions, and treatment is the mainstay of BU control with the aim to reduce morbidities. This is also described in the story of Codjo and his sister; they both acknowledge that they should have gone to the hospital earlier for medical treatment. Chapter 8 explores the role of various actors in referral of patients to BU treatment centers in Benin.

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Appendix 1: The Participation Scale (v.6.0) (van Brakel et al. 2006)

No

NO

Participation Scale

Not

spec

ified

Yes

Som

etim

es

No

Don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

SCO

RE

1 Do you have equal opportunity as your peers to find work?

0 0

[if sometimes or no] How big a problem is it to you?

1 2 3 5

2 Do you work as hard as your peers do? (same hours, type of work etc)

0 0


1 2 3 5

3 Do you contribute to the household economically in a similar way to your peers?

0 0


1 2 3 5

4 Do you make visits outside your village / neighbourhood as much as your peers do? (except for treatment) e.g. bazaars*, markets

0 0


1 2 3 5

5 Do you take part in major festivals and rituals as your peers do? (e.g. weddings, funerals, religious festivals)

0 0


1 2 3 5

6 Do you take as much part in casual recreational / social activities as do your peers? (e.g. sports, chat, meetings)

0 0


1 2 3 5

Appendix 1: The Participation Scale (v.6.0) (van Brakel et al. 2006)


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1

No

NO

Participation Scale

Not

spec

ified

Yes

Som

etim

es

No

Don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

SCO

RE

7 Are you as socially active as your peers are? (e.g. in religious / community affairs)

0 0


1 2 3 5

8 Do you have the same respect in the community as your peers?

0 0


1 2 3 5

9 Do you have opportunity to take care of yourself (appearance, nutrition, health, etc) as well as your peers?

0 0


1 2 3 5

10 Do you have the same opportunities as your peers to start or maintain a long-term relationship with a life partner?

0 0


1 2 3 5

11 Do you visit other people in the community as often as other people do?

0 0

[if sometimes or no] How big a problem is it for you?

1 2 3 5

12 Do you move around inside and outside the house and around the village / neighbourhood just as other people do?

0 0


1 2 3 5

13 In your village / neighbourhood, do you visit public places as often as other people do? (e.g. schools, shops, offices, market and tea/coffee shops*)

0 0


1 2 3 5

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Introduction on Buruli ulcer - a neglected tropical diseaseN

o

NO

Participation Scale

Not

spec

ified

Yes

Som

etim

es

No

Don

’t w

ant t

o

No

prob

lem

Smal

l

Med

ium

Larg

e

SCO

RE

14 In your home, do you do household work? 0 0


1 2 3 5

15 In family discussions, does your opinion count? 0 0


1 2 3 5

16 Do you help other people? (e.g. neighbours, friends or relatives)

0 0


1 2 3 5

17 Are you comfortable meeting new people? 0 0


1 2 3 5

18 Do you feel confident to try to learn new things? 0 0


1 2 3 5

* deleted

Comment: TOTAL:

Name:________________________________________

Age:__________ Gender:__________

Interviewer:____________________________________

Date of interview:___/___/_____

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