Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force.

The transition from a pediatric to adult health care system is challenging for many youths with epilepsy and their families. Recently, the Ministry of Health and Long-Term Care of the Province of Ontario, Canada, created a transition working group (TWG) to develop recommendations for the transition process for patients with epilepsy in the Province of Ontario. Herein we present an executive summary of this work. The TWG was composed of a multidisciplinary group of pediatric and adult epileptologists, psychiatrists, and family doctors from academia and from the community; neurologists from the community; nurses and social workers from pediatric and adult epilepsy programs; adolescent medicine physician specialists; a team of physicians, nurses, and social workers dedicated to patients with complex care needs; a lawyer; an occupational therapist; representatives from community epilepsy agencies; patients with epilepsy; parents of patients with epilepsy and severe intellectual disability; and project managers. Three main areas were addressed: (1) Diagnosis and Management of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial, Community, and Legal Supports. Although there are no systematic studies on the outcomes of transition programs, the impressions of the TWG are as follows. Teenagers at risk of poor transition should be identified early. The care coordination between pediatric and adult neurologists and other specialists should begin before the actual transfer. The transition period is the ideal time to rethink the diagnosis and repeat diagnostic testing where indicated (particularly genetic testing, which now can uncover more etiologies than when patients were initially evaluated many years ago). Some screening tests should be repeated after the move to the adult system. The seven steps proposed herein may facilitate transition, thereby promoting uninterrupted and adequate care for youth with epilepsy leaving the pediatric system.

Single session therapy in pediatric healthcare: the value of adopting a strengths-based approach for families living with neurological disorders.

BACKGROUND: Pediatric patients with neurological disorders often require lifelong management of symptoms and behaviours that can result in enduring emotional burden, stress and impacted health-related quality of life. Single session therapy (SST) draws upon patients' existing skills and knowledge and has emerged as a therapeutic approach to address pediatric patient and family needs in a timely manner. This study aimed to assess the clinical effectiveness of SST for pediatric patients with neurological disorders and their families, considering self-efficacy, distress, anxiety, therapeutic alliance and client satisfaction, as well as perceptions of whether SST met their pressing needs. METHODS: A convergent parallel mixed-methods design included quantitative data collection via five standardized questionnaires across three time points and qualitative data collection through semi-structured interviews. Quantitative and qualitative data were analyzed independently and then integrated. RESULTS: The study comprised of 135 participants, including patients, parents and siblings across diverse neurological conditions. Scores of self-efficacy and anxiety in children, and distress and anxiety in adults, improved significantly after the SST. Notably, changes in anxiety in adults remained significant five to seven weeks after the SST. Seventeen participants participated in 12 semi-structured interviews. Participants described that SST (1) was a missing piece in ongoing clinical care, (2) illuminated existing strengths and resilience, and (3) effected a lasting impact beyond the single session. CONCLUSIONS: SST may be a promising initial, strengths-based treatment to support the short-term and potentially long-term needs of pediatric patients with neurological disorders and their families by emphasizing existing strengths, supporting therapeutic alliance and cultivating hope.

Headache Hygiene in Pediatrics: Brushing Up on the Basics.

Headache hygiene refers to self-management behaviors and practices aimed at reducing headache-related disability and improving self-efficacy. Although self-management interventions have an established place in the management of a wide range of chronic conditions, there is still not a standardized approach to this in pediatric headache. In this article, we focus on headache hygiene approaches including education, lifestyle interventions, and psychologic interventions. We also present our center's resource compilation, made available to patients by quick response code technology, as an example of a structured approach to headache hygiene. Further work should explore a standardized approach to headache hygiene and strategies to support adherence, including the use of technology as an innovative health care delivery pathway.

Evaluation of an information resource for parents of children with autism spectrum disorder.

This study sought to evaluate a newly created information resource book for parents of children newly diagnosed with Autism Spectrum Disorder entitled Autism Spectrum Disorder: Information for Parents. A purposive sample of 13 participants (comprised of mothers of children with ASD and ASD service providers) participated in 1 of 3 focus groups. Focus group participants provided their feedback regarding the accessibility, usefulness, content accuracy and tone of the resource book. Findings reveal that concise yet comprehensive and hopeful information targeted to parents at diagnosis, has been lacking in ASD practice. This supportive informational resource book addresses this gap in supporting family adaptation and mobilization at the key juncture of diagnosis. Suggestions for resource refinement and future development of similar diagnostic-related literature to support families of newly-diagnosed children are outlined.