Epilepsy in Papua New Guinea: a longitudinal cohort study. 2019

Casparia Mond, and Trevor Duke, and John Vince
Paediatric Department, Port Moresby General Hospital, Port Moresby, Papua New Guinea.

Epilepsy affects up to 1-4% of children living in low income and middle countries, however there are few studies of the problems faced by children with epilepsy in such settings. We aimed to document the situation for children with epilepsy in Port Moresby, an urban area in Papua New Guinea, a low-middle income country in the Western Pacific region. We conducted longitudinal cohort study using mixed methods, with serial data collected over 2 years which assessed seizure control, neurodevelopment, and structured interviews with children and parents. For quantitative data descriptive statistics are reported; for qualitative data common responses, themes, experiences and perceptions were grouped and reported in narrative. Forty-seven children with epilepsy were followed for a median of 18 months. Twenty six (55%) children had some associated neurodevelopmental disability. Children gave detailed and vivid descriptions of their experience of seizures. Most children and parents had a positive view of the future but faced many challenges including financial difficulties, fear of having seizures especially at school, restriction of activity that isolated them from peers, and significant stigma and discrimination. Seizure control improved over time for some children, but inconsistent supply of phenobarbitone hindered better control. Comprehensive care for children with epilepsy requires a good knowledge of the individual patient -including their seizure type and comorbidities, their family, and their strengths and vulnerabilities. Children with epilepsy face many problems that can lead to isolation, discrimination and restricted opportunities.

UI MeSH Term Description Entries
D008137 Longitudinal Studies Studies in which variables relating to an individual or group of individuals are assessed over a period of time. Bogalusa Heart Study,California Teachers Study,Framingham Heart Study,Jackson Heart Study,Longitudinal Survey,Tuskegee Syphilis Study,Bogalusa Heart Studies,California Teachers Studies,Framingham Heart Studies,Heart Studies, Bogalusa,Heart Studies, Framingham,Heart Studies, Jackson,Heart Study, Bogalusa,Heart Study, Framingham,Heart Study, Jackson,Jackson Heart Studies,Longitudinal Study,Longitudinal Surveys,Studies, Bogalusa Heart,Studies, California Teachers,Studies, Jackson Heart,Studies, Longitudinal,Study, Bogalusa Heart,Study, California Teachers,Study, Longitudinal,Survey, Longitudinal,Surveys, Longitudinal,Syphilis Studies, Tuskegee,Syphilis Study, Tuskegee,Teachers Studies, California,Teachers Study, California,Tuskegee Syphilis Studies
D008297 Male Males
D010219 Papua New Guinea A country consisting of the eastern half of the island of New Guinea and adjacent islands, including New Britain, New Ireland, the Admiralty Islands, and New Hanover in the Bismarck Archipelago; Bougainville and Buka in the northern Solomon Islands; the D'Entrecasteaux and Trobriand Islands; Woodlark (Murua) Island; and the Louisiade Archipelago. It became independent on September 16, 1975. Formerly, the southern part was the Australian Territory of Papua, and the northern part was the UN Trust Territory of New Guinea, administered by Australia. They were administratively merged in 1949 and named Papua and New Guinea, and renamed Papua New Guinea in 1971. New Guinea, East,New Guinea, Papua
D010290 Parents Persons functioning as natural, adoptive, or substitute parents. The heading includes the concept of parenthood as well as preparation for becoming a parent. Step-Parents,Parental Age,Parenthood Status,Stepparent,Age, Parental,Ages, Parental,Parent,Parental Ages,Status, Parenthood,Step Parents,Step-Parent,Stepparents
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D002658 Developmental Disabilities Disorders in which there is a delay in development based on that expected for a given age level or stage of development. These impairments or disabilities originate before age 18, may be expected to continue indefinitely, and constitute a substantial impairment. Biological and nonbiological factors are involved in these disorders. (From American Psychiatric Glossary, 6th ed) Child Development Deviations,Child Development Disorders,Child Development Disorders, Specific,Developmental Delay Disorders,Disabilities, Developmental,Development Disorders, Child,Child Development Deviation,Child Development Disorder,Development Deviation, Child,Development Deviations, Child,Development Disorder, Child,Developmental Delay Disorder,Developmental Disability,Deviation, Child Development,Disability, Developmental
D002675 Child, Preschool A child between the ages of 2 and 5. Children, Preschool,Preschool Child,Preschool Children
D004522 Educational Status Educational attainment or level of education of an individual. Education Level,Educational Achievement,Educational Attainment,Educational Level,Level of Education,Maternal Education Level,Maternal Educational Attainment,Maternal Educational Level,Paternal Education Level,Paternal Educational Attainment,Paternal Educational Level,Achievement, Educational,Educational Status, Maternal,Educational Status, Paternal,Maternal Educational Status,Paternal Educational Status,Status, Educational,Attainment, Educational,Attainment, Maternal Educational,Attainment, Paternal Educational,Education Level, Maternal,Education Level, Paternal,Education Levels,Educational Achievements,Educational Attainment, Maternal,Educational Attainment, Paternal,Educational Attainments,Educational Level, Maternal,Educational Level, Paternal,Educational Levels,Level, Education,Level, Educational,Level, Maternal Education,Level, Maternal Educational,Level, Paternal Education,Level, Paternal Educational,Levels, Maternal Educational,Maternal Education Levels,Maternal Educational Attainments,Maternal Educational Levels,Paternal Education Levels,Paternal Educational Attainments,Paternal Educational Levels,Status, Maternal Educational,Status, Paternal Educational
D004827 Epilepsy A disorder characterized by recurrent episodes of paroxysmal brain dysfunction due to a sudden, disorderly, and excessive neuronal discharge. Epilepsy classification systems are generally based upon: (1) clinical features of the seizure episodes (e.g., motor seizure), (2) etiology (e.g., post-traumatic), (3) anatomic site of seizure origin (e.g., frontal lobe seizure), (4) tendency to spread to other structures in the brain, and (5) temporal patterns (e.g., nocturnal epilepsy). (From Adams et al., Principles of Neurology, 6th ed, p313) Aura,Awakening Epilepsy,Seizure Disorder,Epilepsy, Cryptogenic,Auras,Cryptogenic Epilepsies,Cryptogenic Epilepsy,Epilepsies,Epilepsies, Cryptogenic,Epilepsy, Awakening,Seizure Disorders

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