Haemophilia in Côte d’Ivoire (the Ivory Coast) in 2017: Extensive data collection as part of the World Federation of Hemophilia’s twinning programme

Abstract

Introduction In sub‐Saharan African countries, research on haemophilia is limited. Since 2015, a partnership has been established through the World Federation of Hemophilia (WFH)’s twinning programme between the haemophilia treatment centre (HTC) of the Centre Hospitalier universitaire of Yopougon in Abidjan, Côte d’Ivoire, and the Cliniques universitaires Saint‐Luc of Brussels, Belgium. Aim This study sought to collect accurate, and detailed demographic, clinical, and laboratory data on the whole identified Ivorian haemophilia population. Methods A prospective study was conducted in 2017 in Yopougon’s HTC. Participants were assessed through multidisciplinary workups including interviews, logbook review, pedigree establishment, clinical examination and laboratory testing. Results Data on 81 patients with haemophilia (PWH) (78 severe and moderate) were collected. Postcircumcision bleeding was the most common diagnosis reason (32%). Mouth bleeds and skin wounds accounted for 55.2% of bleeds. Pedigrees revealed 63 deaths in affected relatives among 33 families. Most PWHs (76.5%) were treated on demand, and 21% had never been exposed to clotting factor. Non‐substitutive therapies (tranexamic acid [43%], physiotherapy [11%] and DDAVP [0%]) were underused. Overweight was uncommon. Knees were the most clinically affected joints at the Hemophilia Joint Health Score. Inhibitors were present in 7.8% of previously treated PWHs. Conclusions This study highlights the value of simple, feasible and inexpensive tools to collect data in the Ivorian haemophilia population and provides the basis for developing and implementing locally appropriate strategies to improve screening, diagnosis, preventive care, treatment and education. It demonstrated the WFH twinning programme benefits for haemophilia care in the developing world.

Development and evaluation of appropriate, culturally adapted educational tools for Ivoirian patients with haemophilia, haemophilia carriers and their families

“…5 In the WFH Twinning Program setting, regular multidisciplinary consultations have highlighted the lack of knowledge and understanding of haemophilia, its management, its complications (such as deaths related to circumcision) and bleeding risks for carriers. 13,14 By integrating the above recommendations while considering We paid specific attention to the carriers because mothers' education has proven to be the cornerstone of improving PWH care in Africa, as women are more likely than men to take on caregiving activities. 19 Additionally, the mothers had shown insufficient knowledge concerning the risk of transmitting the disease to their offspring and of their own bleeding risk.…”

“…The educational materials were developed in 2017 by researchers after a survey highlighted the tremendous lack of knowledge on haemophilia detected during the visits, as previously reported in several papers, 13,14 in addition to a review of the related literature. A written questionnaire consisting of 20 true/false questions, scaled from 0 to 20, was developed in order to assess participants' knowledge of haemophilia (Annex S1).…”

“…Regular onsite multidisciplinary visits enabled us to ascertain the awareness of haemophilia among Ivoirian PWH, carriers and their families. 13,14 Given this context, we undertook the development and evaluation of appropriate, culturally adapted educational tools on haemophilia for Ivoirian PWH, carriers and their families in order to enable them to gain a better disease understanding and acquire self-management skills and to improve haemophilia-related health outcomes in Côte d'Ivoire.…”

“…incorrectly answered are as follows: the possibility of playing in the playground for boys with haemophilia and the need to screen the brothers of PWH. Concerning PWH, the need for physiotherapy in case of joint bleeds and the relevance of HTC consultations outside bleeding episodes proved problematic.Overall, the participants' motivation to improve their knowledge about haemophilia was high, with a mean score of 18.4/20 ± 2.5(range:[8][9][10][11][12][13][14][15][16][17][18][19][20]. The mean score of how well they rated their disease knowledge was 3.4/5 ± 1.3 (range:[1][2][3][4][5].…”

Inhibitor epidemiology and genetic‐related risk factors in people with haemophilia from Côte d’Ivoire

“…19 Demographics on the Ivoirian PWH were collected for the first time in 2017, as reported elsewhere. 20 It was, thus, impossible to obtain data on cumulative life-long ED, with the collection of objective data on ED limited to the 2016-2017 evaluation period. CFC consumption and ED were calculated using systematic analysis, based on a combination of the data recorded in the PWH logbooks, on regular follow-up consultations, and in CFC donation registry.…”