english español français nederlands português italiano
International Federation for Spina Bifida and Hydrocephalus
home search sitemap contact disclaimer
International Federation for Spina Bifida and Hydrocephalus - Homepage

Introduction

Philosophy of the IF projects

Hydrocephalus in developing countries

Spina Bifida in developing countries

Research in developing countries

Partners and Parent groups

IF publications

Special literature

Partners in development cooperation

 

Developing countries

Evaluation of the IF projects

IF, in cooperation with the Norwegian and the Swedish associations, has committed itself to a continuous evaluation of results and follow up of the programme.

The development goal of the project, called  "A better life situation for people with spina bifida and/or hydrocephalus and their families through social inclusion in the local environment"' is the term of reference for evaluating activities and progress.

Apart from the ongoing and annual-based 
-          thematic evaluations
-          result evaluations
-          financial evaluation
IF has, since the beginning of the project, ordered 2 external qualitative evaluations  to improve the total programme.

* External evaluation of the first 5 years of the project (2002)

* External evaluation of the IF programme in Africa (2006)

General aim of the evaluation: to get a view on the effects  the project has on the lives of parents, children and families; A better life situation for people with spina bifida and/or hydrocephalus and their families through social inclusion in the local community.

 

 

External evaluation of the first 5 years


Evaluation of the IF programme for early detection, treatment and rehabilitation of children with Spina Bifida and Hydrocephalus in East Africa 1998 – 2001.

By Dr Verpoorten and Dr Gillis

Early detection
The problem of early detection is complex. In regions where IF organised awareness campaigns (radio publicity and leaflets to health workers) the load of patients showing up, became too big to organise effective services (Dar Es Salaam). In other regions the programmes are confronted with patients who come often too late so that brain damage already had occurred. The practice of the projects showed that without publicity, but due to the good service the patient flood was big enough to develop the programme.

There seems to be a very high incidence of Spina Bifida in East Africa. For Hydrocephalus the incidence is even higher due to a combination of congenital and acquired forms (sequels of inadequate treatment of meningitis). It is impossible at this stage of the programme to serve all cases. Therefore, the programme is needed to invest in research that can be used in prevention of the two disabilities. In Malawi, Uganda and Tanzania, the first steps are taken towards registration of the incidence of newborns with Spina Bifida. Hydrocephalus is mostly caused by inadequate treatment of meningitis. Therefore, vaccination with Hemophilus Influenza Hib vaccine would be helpful. Training of the primary health care workers in detecting and correct treatment of meningitis is mandatory. The majority of cases of Hydrocephalus is caused by meningitis, often wrongly diagnosed and treated as malaria. Further investigation in this matter is needed.

Treatment of Spina Bifida and Hydrocephalus
Where initially the programme thought that the main problem was a lack of shunts and availability of skilled surgeons, the problem seems more complex. In Dar es Salaam the infection rate after shunting is still too high. Pre- and postoperative care have been approved by engaging a paediatrician (Dr Mushi) and a co-ordinating doctor (Dr Meryl). However, in Dar es Salaam this major investigation did not result in a good outcome of surgery. Better results in Moshi and Kijabe and recently the excellent results of Mbale show that minimum standards of equipment and trained and controlled theatre staff are the guarantee for avoiding infections. It is hoped that the new disability hospital in Dar es Salaam will contribute to this goal. Protocols about treatment of Spina Bifida and Hydrocephalus have to be set up by the (neuro) surgeons involved.

Visiting Malawi and Zambia we found rather good results with locally made shunts. Infection rate was acceptable. Over drainage was mentioned as a complication without dramatic clinical consequences. and in both regions a comparative study of the results of the local and the Chabra shunt was started. It is too early to expect results of this survey. The programme did not want to replace an efficient local shunt with the Chabra shunt before being sure to be able to improve the situation by doing this. Major problems in Moshi, Malawi, Zambia and Kampala are the availability of theatre space and anaesthesiologists. These problems are more common in governmental hospitals where long waiting lists exist. In Hydrocephalus patients this can cause extra brain damage.

Finally, the first steps are made to start with Third Ventriculostomy. Dar Es Salaam and Mbale are selected to be the two centres were this technique will be started: Mbale, because Dr Warf, a Paediatric Neurosurgeon of the States, started to work there in 2000. Dar Es Salaam, because it is hoped that the new Disability Hospital will be able to host a workshop mid March 2001 with Dr Vloebergs who is an expert in this technique. The experience of the past 3 years stressed the importance of well-controlled surgery procedures, where the selection of patients, theatre preparation, rigorous antiseptic approach and teamwork are essential.

The project started to co-fund surgery in some regions. It should be evaluated if this in a long term is the best option. Training and information at all levels, good postoperative follow up are more needed. Treatment till now is focussed on surgery. Other needed medical treatment has to be developed.

Rehabilitation
Most projects are working with CBR programmes that assure follow up at home. This very good network is functioning well, but some patients are coming from out of the region that the CBR project is covering. Strategies to solve this problem have to be developed. In none of the projects (except for Moshi) there is an efficient incontinence treatment. Training of the parents and health workers is here urgently necessary. Excellent workshops for technical aids, as available in Kampala (Katalemwa) and Zambia are to be set up in the other programmes too.

Conclusion
The need for the programme of early detection, treatment and rehabilitation of children with Spina Bifida and Hydrocephalus in East Africa is evident. Patients are standing in line for help and expertise was not available till IF started. Expertise in all elements of the treatment and rehabilitation of Spina Bifida and Hydrocephalus has improved. Some projects are better in shunting, others in technical aids, some have a well developed CBR system, others started an incontinence programme. Exchange of staff and knowledge between the several programmes will be of benefit to the quality of the services. Workshops (June 1999), a training session (March 2000) in Dar es Salaam, the planned Moshi conference (March 2001) and in Dar es Salaam (March 2001 and September 2001) are excellent initiatives. Exchange of experts between centres is already organised and should be encouraged in the future too and so should assistance in daily life.

 

 

external evaluation 2006

General aim of the evaluation: to get a view on the effects  the project has on the lives of parents, children and families; A better life situation for people with spina bifida and/or hydrocephalus and their families through social inclusion in the local community.

 

subscribe to our newsletter

 

 

IF Neurosurgery

Flour Fortification Initiative

Council of Europe

Include Everybody

European Year of Intercultural Dialogue

IFSBH Annual Report 2007

Global Partnership for Disability and Development

Folsaeure

International Disability and Development Consortium