Comparative analysis of healthcare provision to individuals with cleft lip and/or palate at specialised academic centres in South Africa

This open-access article is distributed under Creative Commons licence CC-BY-NC 4.0. RESEARCH Comparative analysis of healthcare provision to individuals with cleft lip and/or palate at specialised academic centres in South Africa P Hlongwa,1,2 BOH, BDS, MDent (Ortho); T C Dandajena,1 PhD; L C Rispel,2 PhD 1 2 Department of Orthodontics, School of Oral Health Sciences, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa Centre for Health Policy, School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa Corresponding author: P Hlongwa () Background. Cleft lip and/or palate (CLP) is the most common congenital anomaly of the craniofacial complex, with an estimated worldwide prevalence of 1/500 - 700 live births. Affected children require immediate medical treatment and prolonged management by a multidisciplinary team of health professionals. Objectives. To describe and compare healthcare provision to individuals with CLP at specialised care centres in South Africa (SA). Methods. The study was conducted at all CLP care centres in 6 of SA’s 9 provinces that provide specialised treatment and care to individuals with CLP. At each centre, the team leader was interviewed using a semi-structured questionnaire that focused on the point-of-care entry for CLP patients; type of services provided; whether treatment protocols were used, which treatment protocols were used and internal referral systems; and members of the healthcare team. Stata 13 (StataCorp., USA) was used to analyse the data. Results. Eleven CLP team leaders participated in the study, of whom 5 were from Gauteng Province. The point-of-care for CLP patients in the majority of centres was plastic surgery (n=9/11; 81.8%). The majority of centres (n=10/11; 90.9%) followed similar treatment protocols and only 1 centre performed lip surgery at 12 - 18 months. Although all centres reported a multidisciplinary team approach for CLP care provision, there were gaps in the health professions categories, which influenced the type of treatment provided. Hence, surgical repair of the lip and palate (n=10/11; 90.9%) and speech therapy (n=7/11; 63.6%) dominated the type of treatment provided, and patients were referred to other provinces or to the private health sector for other types of treatment. Conclusions. The gaps in services at the CLP care centres in SA need to be addressed to ensure integrated, holistic care provision. S Afr Med J 2019;109(6):426-430. DOI:10.7196/SAMJ.2019.v109i6.13654 Cleft lip and/or palate (CLP) is the most common congenital anomaly of the craniofacial complex, with an estimated worldwide prevalence of 1/500 - 700 live births.[1] In South Africa (SA), CLP is among the 5 most common birth defects reported,[2] with an estimated prevalence of 0.1 - 0.4/1 000 live births.[2-4] Affected children present with a number of medical problems and potential complications that include feeding difficulties, hearing loss, speech problems, disfigured appearance and dental malformation.[5-8] Hence, individuals with CLP require co-ordinated and specialised treatment offered by a multidisciplinary team,[9-11] which includes geneticists, maxillofacial surgeons, otolaryngologists, orthodontists, paediatricians, plastic surgeons, paediatric dentists, psychologists, professional nurses, social workers and speech and language therapists.[12-14] These teams are available in high-income countries (HICs). Various clinical protocols have been proposed for the treatment of CLP.[15] Many HICs have adopted national protocols and guidelines and have centralised services and/or established centres for the management and follow-up of affected individuals.[16-19] The advantages of centralisation and/or concentration of specialised services include the following: co-ordination of treatment, standardised data collection, availability of a critical mass of experts, clinical audit and review to enhance quality of care, responsiveness to patient and family needs, and ongoing monitoring and evaluation.[12,20-26] Globally, it is estimated that only 20% of individuals with CLP have access to comprehensive treatment that involves a team co-ordinated approach.[27] The treatment and care gaps include: lack or shortages 426 of healthcare professionals, lack of infrastructure and delays in surgical repair of the clefts.[27,28] These gaps are most pronounced in low- and middle-income countries (LMICs) in Africa, Asia and South America.[28,29] In many LMICs, outreach programmes by nongovernmental organisations (NGOs) have assisted in improving the services for individuals with CLP.[29-34] These NGOs, together with support groups that include parents of the affected children, have played an important role in the ongoing management of CLP patients. However, the majority of LMICs, including SA, lag behind in terms of national treatment protocols, standardised data collection, access to care by a multidisciplinary team, and evaluation of treatment outcomes.[12,18,35] Notwithstanding improvements in the treatment of CLP individuals in the preceding decades,[36-38] there is still no universal protocol for repair and ongoing clinical management. However, treatment modalities in the management of CLP are often based on chronological age and dentofacial development.[38] The common elements of clinical standards and sequence of treatment of CLP are shown in Table 1.[38] At birth, genetic counselling is given to parents, and feeding of the baby is evaluated. Depending on the size of the cleft, feeding plates are recommended within the first week after birth to assist with feeding. Presurgical infant orthopaedic treatment for approximation of the segment is also performed prior to cleft lip repair. As the child grows, several follow-up consultations for management of the cleft are done until treatment is completed during adulthood.[12] June 2019, Vol. 109, No. 6 RESEARCH Table 1. Treatment sequence in the management of cleft lip and/or palate Chronological age/dentofacial development At birth 3 months 6 - 12 months 5 - 7 years 10 - 14 years 16 - 18 years 19 - 20 years Cleft lip and/or palate treatment Genetic counselling Feeding plate Presurgical infant orthopaedics Psychosocial counselling Surgical lip repair Surgical palate repair Grommets Speech therapy Routine dental treatment Alveolar bone graft Speech therapy Dental treatment/maxillary expansion/bone graft/dental arch alignment Speech therapy Orthodontic treatment/maxillary expansion/bone graft/maxillary protraction Orthodontic treatment/orthognathic surgery/maxillary advancement Psychology counselling Prosthodontic replacement of missing teeth Nose revision Adapted from De Ladeira and Alonso.[38] There is a dearth of studies on the management of CLP in SA, except for a 1953 study performed in a Johannesburg private hospital, which found that the clinical management of patients with CLP was uncoordinat (...truncated)