Jeddane L, Bousfiha AA, Esser M
For the African Society for Immunodeficiencies (ASID).
Introduction: The African Society for Immunodeficiencies (ASID) is now 7 years-old and gathers more and more members. Founded in 2008 in Casablanca, ASID established several objectives: to create an African network for Primary Immunodeficiencies (PID), to raise PID awareness in Africa among physicians and stakeholders and to improve PID diagnosis and management.
Since its foundation, ASID established several projects or activities. First, its website, created in 2010 and managed by the General Secretary, is the main communication tool for the society. An International PID Registry is discussed since 2012, within the Registry committee working group. It is now implemented in a few countries and in progress in some regions. A newsletter was created in 2014, and is published quarterly, presenting topics related to PID in Africa. Finally, a training program, the A-project, has been established since 2014, targeting healthcare providers (physicians, biologists and nurses) in African countries where PID awareness is low.
It was time to ask for a feedback from our members on what they think about our projects and what they expect from ASID. This also was an opportunity to get some suggestions from our members, and for the registry to get a better idea on PID epidemiology in Africa.
Methods: We developed 4 mini online surveys (no more than 10 questions) for each activity: the website, the eLetter, the A-project and the Registry. The links for these surveys was sent to a mailing list collected from ASID registered members on the website, eLetter mailing list and attendees to the A-projects. An invitation was also included in the 4th issue of ASID eLetter. No incentive was offered and two reminders were sent. Responses were collected between December 22nd to February 18th.
Results: On 147 mails sent, 11 bounced back as the address was incorrect. However, only 18 responses were collected (Response rate of 0,13%). Response volume reached maxima after eLetter diffusion and the first reminder. Respondents came from 10 different countries, which are already known as implied in Primary Immunodeficiencies. All respondents considered themselves as ASID members and word of mouth seemed to be the main way to get new ASID members. Half of the respondents were immunologists, followed by pediatricians (38%) and scientists (18%).
For the ASID website survey, 16 members answered and 81% of respondents already visited the website. Majority of respondents (69%) liked or really liked the website design. Concerning the contents of the website, majority of respondents liked the different categories, especially the news content (Score of 2 on a scale ranging from 1 for really like to 5 for really dislike). Respondents suggested to update more regularly the website, but also to improve the registration process, propose a member-only section, to present regional actions, to add a search engine “Find a specialist/ center in your area” and to present useful links to other PID societies and resources.
For the ASID eLetter survey, 13 responses were collected, within 2 respondents never read any issue of the eLetter. Overall, respondents were (totally) satisfied with the eLetter (75%). There was no significant difference between mail and website design, though some respondents preferred the mail design. Only a few people (1 or 2) disagreed with the following statements:
- The promotion for the eLetter is adequate;
- The mini-reviews answer to questions on the chosen topic;
- The case reports help to diagnose PID in the African context;
- The topics chosen for the mini-reviews and case reports are pertinent in our context;
- The publications are helpful;
- The scientific and social events encourage to organize such further events;
- The agenda is helpful;
- The translations to English or French are adequate.
However, some respondents suggest us to edit language, to produce special issues and to present our activities in research and in the registry.
Concerning the A-project survey, 11 members completed this survey, whose 8 already attended an A-project in Sudan, Benin, Gabon or Cameroon. Overall, they were satisfied with the global organization and quality of presentations (Score of 2.0), especially with the interactive workshop (Score: 1.78) and the availability of the African trainer (Score: 1.44). The respondents who never participated in an A-project were eager to do so. Respondents suggest us to introduce a topic on complement deficiencies in the program and to organize more workshops and more activities. On this point, ASID already modified his previous program by implementing specific A-projects for scientists (Biol A-project) and nurses (Nurse A-project), and in programming 3 levels for each Med A-project.
Finally, for the Registry survey, 10 members completed the survey, whose 2 of them never heard about the ASID registry. Six respondents already participate in a PID patient registry in their own country. Respondents reported 403 PID patients diagnosed in the last 5 years, mainly from Morocco (68%) and Algeria (27%), but also from Benin, Sudan and Senegal. Distribution of these patients showed a large proportion of Antibody deficiency (34%), followed by CID (26%) and congenital defects of phagocytes (18%). The main reason for the 6 respondents who didn’t participate in a registry was that they didn’t have an occasion to do so. However, one respondent had a concern about a legal conflict to transfer confidential data, and another one reported that they couldn’t follow up their patients. However, all respondents were willing to participate in the ASID registry.
Conclusion: As the answering rate was low, which is unfortunately common in Africa, drawing conclusions is hardly possible. Is this low response rate due to a lack of interest or a lack of time? However, it seems that ASID members are globally satisfied with our activities and some have good suggestions to improve our Society. ASID should strive to imply more active members in the decision-making process and highlight the importance of each member.