Epilepsy in transition from child care to adult service: a missing link in sub-Saharan Africa

Abstract

Epilepsy is a common chronic neurological disease which predominantly affects children and young adults. The disease is highly stigmatised and transition from child care to adult services is not routine in many low- and middle-income countries. Where a treatment system follows routines which cannot be sustained in such countries because of specialised manpower challenges, it becomes imperative that appropriate care models be sought for patients whose seizures fail to remit in childhood. In teaching hospitals, well-organised, multidisciplinary meetings and a planned transfer between paediatric and adult neurologists will be feasible. However, an alternative model is advocated at the community level where the majority of the patients reside which involves task shifting to general practitioners and community healthcare workers. The latter can organise home visits to ensure management compliance. This will ensure better seizure outcomes and a good quality of life for epileptic patients.

Keywords

Epidemiology disease Africa location other diagnosis other treatment nervous physiology

Introduction

Epilepsy is a very common chronic neurological disease which affects more than 50 million people worldwide.^1,2 The majority of the patients live in low- and middle-income countries (LMICs) and more than 85% are aged below 30 years in Africa.³ Stigmatisation and discrimination against those afflicted limit their potential for education, employment and marriage.¹ With appropriate treatment, remission is achieved in about 70% of cases in developed countries,¹ but in LMICs, that proportion is much lower due to poor drug supply, treatment adherence and economic factors. Consequently, up to 50% of the cases with childhood epilepsy may persist through adolescence into adulthood.⁴ The need therefore arises for continuity of care which is best done through a transition process.

Transition is defined as the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions, such as epilepsy, from child-centred to adult-centred healthcare systems.^5,6 These services are multidisciplinary and place great emphasis on supporting the autonomy of the adolescent patient. The medical, psychosocial, educational and vocational needs of adolescents and young adults are addressed. Unfortunately, this ideal situation does not exist in many hospitals in LMICs because of manpower challenges and heavy patient loads which make planning organised, multidisciplinary meetings difficult to sustain. Therefore, the care of epileptic patients who have passed the age of paediatric care to adult services is not optimal.

The core elements for successful transition include having a transition policy in place, effective tracking and monitoring of patients attending epilepsy services, demonstrated readiness for movement to adult services and careful planning between the paediatric and adult neurologists for the transfer of care.⁷ Ideally, the whole process takes between 2 and 3 years to achieve the desired goals.

Transition is usually carried out in two stages for children with uncomplicated epilepsy. The early stage occurs between 13 and 14 years. It starts with planned meetings of child and adult neurologists to promote understanding of the health problems with a focus on psychologically preparing both the patients and their parents for the transition process. It aims at developing autonomy, which is fundamental to adult care. This typically occurs between 15 and 16 years, the focus being on identifying the unique health needs of the patient and providing necessary support.^5–7 However, for individuals with severe epilepsy, and in particular those with learning difficulties, transition is delayed by 3 years till the age of 19 years because of coping challenges.

Methods

In order to seek out information on transition of care in Africa, published manuscripts on transition of care for patients with epilepsy were searched in PubMed, using keywords: ‘transition’, ‘epilepsy’, ‘child to adult services’ and ‘Africa’. In addition, interviews were held with adolescent patients attending the adult neurology clinic at the University College Hospital, Ibadan (UCH) concerning challenges faced in their care.

Results

Remarkably, publications on transition of care in epilepsy were only available from South Africa.⁸ However, there were publications on transitional services for other chronic conditions such as: cystic fibrosis, sickle cell anaemia and HIV/AIDS.^9–11 Among other chronic childhood diseases requiring transition of care are autism, spina bifida, cerebral palsy, nutritional disorders and mental illness. Health education is provided as well as peer support particularly for HIV/AIDS sufferers.

In most African countries, actual practice consists basically of referral to adult clinics when a patient reaches 15–18 years. Information on the seizure type and anti-epileptic medication(s) in use is usually provided in the referral letter. Transfer omits the required development of trust and autonomy. In addition, adolescent patients interviewed by us were concerned that insufficient information was provided by healthcare providers on epilepsy and on stigmatisation by peers.

Discussion

A suggested two-pronged approach to transition of care for epileptic patients is suggested for LMICs. The first is the well-known hospital-based care involving child and adult neurologists. This is appropriate for well-staffed tertiary hospitals. The second, a task-shifting model, involves building transition care on the foundation of already existing primary care systems. This approach has been advocated for the management of many chronic conditions in Africa.^13,14 A community-based approach has a high likelihood of achieving the desired goals through the involvement of Community Health Extension Workers (CHEWs) who can make home visits and ensure adherence to medication.

CHEWs work closely with the members of the community and therefore serve as a good link between individuals and families and the primary healthcare system. To do so effectively, it is essential that CHEWs are trained on the essence of transitional care and they should work closely with general practitioners and community nurses in the follow-up of epileptic patients within the community. Such a practice was established in Sotoba, Northern Togo, where supervised care at the community level resulted in improved epilepsy remission with effective social integration of patients.¹⁵ This community-based approach is therefore deemed feasible and appropriate in LMICs. Not to be ignored would be traditional healers who some patients would prefer to consult.¹⁶ The development of non-threatening relationships with such alternative care providers with emphasis on sharing information and overcoming stigma cannot be over-emphasised.

There are certain challenges to be faced during transition: first, disease factors (i.e. exacerbation of seizures); and second, human factors. Seizure frequency in adolescence can increase owing to hormonal changes or pregnancy. Moreover, during pregnancy, fear of oncogenic effects may result in poor medication adherence. Any increase in seizure frequency for whatever reason may result in more stigmatisation, distrust in the process and a tendency to experiment with alternative care.

Human challenges relate to the patient, family members and healthcare providers. Mental handicap may impair the process of care owing to associated behavioural and intellectual difficulties. The absence of parents accompanying patients to consultations may lead to feelings of insecurity. Furthermore, the sudden rupture of deep bonds formed between paediatricians and patients and/or parents may be catastrophic. By contrast, a specialist may exhibit a lack of trust in the competence of a former treating general practitioner.

Conclusion

Proper transition of care of childhood epileptic patients should become more widespread in LMICs. The use of CHEWs is recommended.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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