ASSESSING THE QUALITY OF CARE FOR HAEMOPHILIA AT THE YAOUNDE REFERENCE TREATMENT CENTRE

Nzometia Crysantus Yimlefack (nzom2007@yahoo.com)
Microbiology, parasitology, haematology and infectious diseases, The University of Yaoundé I
September, 2014
 

Abstract

Introduction/Aim
Haemophilia is a sex-linked congenital bleeding disorder caused by a deficiency of coagulation factor VIII (in haemophilia A) or factor IX (in haemophilia B), with an estimated frequency of about1/10 000 births. Haemophilia A is more common, representing 80-85% of the total haemophilia population. The World Federation of Haemophilia (WFH) estimates the number of People Living with Haemophilia (PLWH) in the world at 400 000, with about 75% of them living in developing countries. Being a chronic disease its management is both complex and costly due to its clinical manifestations and complications. However, with adequate treatment products and proper care, PLWH can have perfectly healthy lives. Unfortunately, about 75% of them receive little or no treatment. In sub-Saharan Africa (SSA), implementing haemophilia care remains a great challenge because this disease is not yet considered a national health problem in many countries, including Cameroon, where there are about 1800 PLWH and over 100 registered and followed up at the Yaoundé Haemophilia Treatment Centre (HTC).
We carried out a descriptive study at the Haemophilia treatment centre to assess the quality of haemophilia care provided at the Haemophilia Treatment Centre (HTC) of the Yaoundé University Teaching Hospital (YUTH), in order to monitor and improve patient care.
Methods
From August 2013 to February 2014, the HTC was assessed using recommended markers. All the facilities and logistics put in place for the diagnosis and management of haemophilia and other bleeding disorders were verified using a checklist. The available human resources at the HTC were also assessed and interviewed, and consenting study participants (PLWH) were clerked using a pretested questionnaire developed by the authors. The participants aged over 12 years responded directly, while the parents of children aged 12 years and below were clerked. We excluded PLWH who had incomplete data and patients registered at the HTC less than a month prior to the study. All data collected was coded in EPIDATA 3.1, exported to STATA 11.0 for analysis. The threshold of statistical significance was set at 5%.
Results
The HTC is incorporated into the Haematology and Transfusion Unit of the YUTH. The logistics for the diagnosis of haemophilia and storage of treatment products were available although few, except a scale for weighing. Available for treatment were clotting factors in insufficient quantities; there was no Fresh Frozen Plasma, cryoprecipitates nor desmopressin. There were sufficient reagents for diagnosis of haemophilia, but those for the diagnosis of vWD were unavailable. Furthermore, there were 7 trained members of staff, but the multidisciplinary care team was incomplete.
By February 2014, 113 PLWH (all males) had been registered and regularly followed up at the HTC with their ages ranging from 1 to 62 years. Three of the 113 cases registered had died due to internal bleeding. Of the 110 remaining patients, haemophilia A was predominant 94 (85%). They were 9 suspected cases of vWD. Between 2009 and 2014, 38 new cases had been diagnosed.
As regards outcome assessment, 46 PLWH were consecutively enrolled and interviewed. The median age at diagnosis was 3 years with interquartile range from 1 to 9 and the highest age at diagnosis was 32 years. All the participants agreed to have received clotting factors, laboratory care and health education. The participants expressed variable levels of satisfaction ranging from “extremely satisfied” to “not at all satisfied” with the different variables assessed.
Conclusions
The HTC of the YUTH, although not yet ideal, allows for some degree of haemophilia patient care, 113 PLWH registered and followed up since 2009 (03 deaths) including a few trained personnel (07), logistics for diagnosis and follow up, as well as clinical management of bleeding patients. Haemophilia A is predominant among the PLWH (85%). The PLWH expressed varying degrees of satisfaction with the HTC.


********************************************************************************************