Abstract: Medical and academic institutions began prioritizing Pediatric Palliative Care (PPC) less than two decades ago. Although policies and institutions claim to improve the Quality of Life (QoL) of PPC patients and their families, family-defined QoL remains ambiguous. This research investigates the definitions of QoL for PPC patients according to their primary caregivers. We conducted qualitative, semi-structured focus groups of the primary caregivers of PPC patients. The transcripts were analysed for themes using inductive thematic analysis. Participants included primary caregivers of children currently receiving PPC from a healthcare institution in California. We identified several factors that primary caregivers considered components of QoL for their children. The ability to communicate and adapt or be accepted underpinned the concept of QoL for families. QoL for PPC patients was defined by primary caregivers as being able to communicate in a respectful, controlled, physically- and socially-comfortable environment. Attempts to improve QoL should focus not only on pain and symptom control, but also on enhancing opportunities for children to communicate and maintain a sense of dignity.
Abstract: The European Pediatric Pharmaceutical Legislation wants children to benefit more from pharmaceutical progress. In rare diseases, concerns have been raised that this legislation might damage research and stymie drug development. We discuss the role of the European Medicines Agency (EMA) and its Pediatric Committee (PDCO) in the development of ivacaftor, first-in-class for cystic fibrosis (CF) patients with the G551D mutation (and eight other mutations later) and of lumacaftor and ataluren, two more potential break-through CF medications. Ivacaftor was USA-approved early 2012 and six months later in the EU. Registration was based on the same data. We analyzed these drugs’ EU pediatric investigation plans (PIPs) and compared the PIP-studies with the pediatric CF studies listed in www.clinicaltrials.gov. The ivacaftor PIP studies appear to reflect what the developer planned anyway, apart from a study in 1–23-month-olds, which has not yet started. The total negotiation time for the current PIP version was approximately 5.5 years. For companies that develop drugs in pediatric diseases, e.g., CF, PIPs represent considerable additional procedural workload with minimal or no additional benefit for the patients. New drugs for pediatric diseases should not be hampered by additional, unnecessary and costly bureaucracy, but be registered as rapidly as possible without compromising safety.
Abstract: Use of integrative medicine (IM) is prevalent in children, yet availability of training opportunities is limited. The Pediatric Integrative Medicine in Residency (PIMR) program was designed to address this training gap. The PIMR program is a 100-hour online educational curriculum, modeled on the successful Integrative Medicine in Residency program in family medicine. Preliminary data on site characteristics, resident experience with and interest in IM, and residents’ self-assessments of perceived knowledge and skills in IM are presented. The embedded multimodal evaluation is described. Less than one-third of residents had IM coursework in medical school or personal experience with IM. Yet most (66%) were interested in learning IM, and 71% were interested in applying IM after graduation. Less than half of the residents endorsed pre-existing IM knowledge/skills. Average score on IM medical knowledge exam was 51%. Sites endorsed 1–8 of 11 site characteristics, with most (80%) indicating they had an IM practitioner onsite and IM trained faculty. Preliminary results indicate that the PIMR online curriculum targets identified knowledge gaps. Residents had minimal prior IM exposure, yet expressed strong interest in IM education. PIMR training site surveys identified both strengths and areas needing further development to support successful PIMR program implementation.
Abstract: Pediatric endoscopy has evolved into an indispensable tool in the diagnosis and management of gastrointestinal diseases in children. However, there is limited literature focusing on quality improvement initiatives in pediatric endoscopy. The primary goal of this project was to reduce the no-show rate in the pediatric endoscopy unit. Also, we aimed to improve patient and family satisfaction with the procedure by identifying opportunities for improvement. A checklist was designed based on the potential causes of no-show. The endoscopy nurse coordinator reviewed the checklist when scheduling the procedure to identify patients at high risk for non-compliance. Once a risk factor was identified, appropriate actions were taken. She also made a pre-procedure phone call as a reminder and to address any of these risks for non-compliance if present. A patient satisfaction survey was used to identify potential areas for improvement. The no-show rate decreased from an average of 7% in the pre-intervention phase to 2% in the post-intervention phase (p = 0.009). 91% of the patients/family recorded an overall satisfaction of 4 or 5 on a scale of 1–5 5 being best). Quality improvement strategies decreased the no-show rate in the pediatric endoscopy unit. A patient satisfaction survey helped in identifying areas for improvement.
Abstract: Between 23%–46% of children with cerebral palsy experience sleep problems. Many of the sensory-motor and cognitive features of cerebral palsy (such as immobility, pain, and seizures) act as predisposing factors for sleep problems in this population. This paper presents the background related to the etiology and consequences of sleep problems in children with cerebral palsy. The relationship between pain and sleep is emphasized, as the risk of pain is highly prevalent in children with cerebral palsy. The review concludes with a discussion of the evidence-base for environmental non-pharmacological interventions based on light, temperature, sound and bedding to promote sleep for children with cerebral palsy.
Abstract: The role of play in Brazilian children’s hospitals is highlighted, as well as the perspective of humanization in Brazil. Some aspects of our culture are crucial to understanding the importance of play considering our society. Sabara Children’s Hospital (“Hospital Infantil Sabará”) in Brazil is used particularly to discuss humanization. To understand the issue of play in Brazil, it is important to discuss hospitals in their social context, their history, current roles in children’s care, humanization history and child development, according to the approaches of Piaget and Winnicott that are used in our culture.