Education and health outcomes of children treated for chronic conditions

Background with rationaleThis retrospective cohort study linked Scotland-wide education data to national health data to explore associations between childhood chronic conditions and subsequent educational and health outcomes. Main AimConditions studied were diabetes, asthma, epilepsy, attention deficit hyperactivity disorder (ADHD) and depression. We also explored neurodevelopmental multimorbidity (comorbid autism, learning disability, ADHD or depression). Educational outcomes were school absenteeism and exclusion, special educational need, academic attainment and subsequent unemployment. Health outcomes were hospital admissions and all-cause mortality. Methods/ApproachPupil census data and associated education records for all children attending primary and secondary schools in Scotland between 2009 and 2013 were linked to national prescribing data, acute and psychiatric hospital admissions, death records and retrospective maternity records enabling conditions to be studied whilst adjusting for sociodemographic and maternity factors and comorbid conditions. Conditions were ascertained from prescribing data and school records. ResultsAll conditions were associated with increased school absenteeism, special educational need, and hospitalisation. All, excluding diabetes, were associated with poorer academic attainment and all, excluding ADHD were associated with increased mortality. ADHD and depression were associated with increased exclusion from school whilst epilepsy, ADHD and depression were associated with subsequent unemployment. Children experiencing neurodevelopmental multimorbidity had poorer outcomes across all educational domains. Depression was the biggest driver of absenteeism and ADHD was the biggest driver of exclusion. ConclusionIn addition to poorer health outcomes, schoolchildren with these chronic conditions appear to experience significant educational disadvantage compared to their peers. Therefore interventions and further understanding of the intricate relationships between health and education among children with these conditions is required.

Research priorities for childhood chronic conditions: a workshop report

BackgroundChronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy.ObjectiveTo identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.SettingAn Australian paediatric hospital and health consumer organisations.MethodsRecruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed.ResultsSeventy-eight research questions were identified. Five themes underpinned participants’ priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services).ConclusionResearch priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.

Validation of Family Management Measure for the Brazilian culture

ABSTRACT Etjective: To validate the Family Management Measure (FaMM) for Brazilian culture. Method: Quantitative research excerpt, following the recommendations for validation studies. The data presented refer to the last stage of the process. Results: The internal consistency of the items was analyzed through Cronbach's alpha of the six domains: Child's Daily Life (0.78); Condition Management Effort (0.51); Condition Management Ability (0.55); Family Life Difficulty (0.86); View of Condition Impact (0.56); and Parental Mutuality (0.80). Exploratory factorial analysis of the instrument was carried out, obtaining an acceptable adjustment, according to validation standards. Conclusion: The FaMM presents evidence of validation and can be used in the Brazilian culture under the name of Instrumento de Medida de Manejo Familiar, which was adjusted in eight domains, providing varied aspects of family management and a good evaluation of the fundamental aspects of family life in the context of childhood chronic conditions.