ABSTRACT
BACKGROUND: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention to reduce spasticity in children with cerebral palsy. Parents researching SDR for their child may be influenced by framing of SDR in news media articles they read. This study examined framing of SDR in English-language news media. METHODS: Content analysis of English-language news media articles including the search term 'rhizotomy' in the Factiva database published July 2015 to July 2018 in online or print form in Canada, New Zealand, Australia, United States of America and the United Kingdom. RESULTS: One hundred and eighty-six articles were identified describing 91 different children (45 male), almost all with cerebral palsy, median age 4 years old. One hundred and twenty-six articles were written prior to surgery; in many articles, SDR surgery involved travel overseas and/or fundraising. SDR was described universally in positive terms with little discussion of risks. Content of articles variably included the specialized nature of SDR, parental frustration with their local health system and their hope for positive outcomes. There was geographical variation in both numbers of articles and content. CONCLUSIONS: SDR is a common focus in cerebral palsy news media articles in some countries. Framing in these articles supports SDR as a beneficial and specialized procedure and may lead families to believe they need to work outside their local health systems. As news media are likely an important influence on families' attitudes to SDR, clinicians should be aware of this influence.
Subject(s)
Cerebral Palsy , Rhizotomy , Cerebral Palsy/surgery , Child , Child, Preschool , Humans , Language , Male , Muscle Spasticity , Treatment OutcomeABSTRACT
Cerebral palsy (CP) is associated with a high burden of comorbid respiratory disease subsequent to multiple risk factors associated with increasing levels of disability. Correspondingly, respiratory disease is the leading cause of death in CP, including amongst young people who are transitioning or who have just transitioned between paediatric and adult healthcare services. Therefore, consideration of both preventive and therapeutic respiratory management is integral to transition in patients with CP, as summarised in this review.
Subject(s)
Cerebral Palsy/therapy , Epilepsy/therapy , Kyphosis/therapy , Pulmonary Medicine , Respiratory Tract Diseases/therapy , Scoliosis/therapy , Transition to Adult Care , Transitional Care , Advance Care Planning , Cerebral Palsy/complications , Cerebral Palsy/physiopathology , Epilepsy/complications , Gastroesophageal Reflux/complications , Gastroesophageal Reflux/therapy , Humans , Kyphosis/complications , Noninvasive Ventilation , Pneumonia, Aspiration/etiology , Pneumonia, Aspiration/prevention & control , Respiratory Tract Diseases/etiology , Respiratory Tract Diseases/prevention & control , Scoliosis/complications , Sleep Apnea, Obstructive/etiology , Sleep Apnea, Obstructive/therapyABSTRACT
OBJECTIVE: To examine the inter-rater reliability of The King's Outcome Scale for Childhood Head Injury (KOSCHI) with clinicians of varying experience in paediatric traumatic brain injury (TBI); and to examine change in outcome during long-term follow-up of children following traumatic brain injury (TBI) using KOSCHI. METHOD: Retrospective assessment of detailed clinic reports of 97 children followed-up by a tertiary specialist paediatric brain injury service. Investigators were blinded to each other's scores. RESULTS: Inter-rater reliability was substantial (weighted kappa 0.71) and similar for investigators of varying experience. KOSCHI outcome was strongly associated with markers of injury severity (p = 0.028). In longitudinal follow-up, KOSCHI score worsened in 7 (23%) children who were injured under 8 years but in no older children (p = 0.02). CONCLUSION: KOSCHI has high inter-rater reliability for investigators of different experience. Long-term KOSCHI outcome is associated with injury severity. Some young children may develop worse disability over time.