Establishing consensus for the assessment of chronic pain in children and young people with cerebral palsy: a Delphi study.

PURPOSE: Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP. METHOD: A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either "core", "recommended", "exploratory" or "not required". RESULTS: After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression. CONCLUSION: These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model.Implications for rehabilitationChronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population.The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP.Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP.

Research priorities for childhood chronic conditions: a workshop report.

BACKGROUND: Chronic 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. OBJECTIVE: To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices. SETTING: An Australian paediatric hospital and health consumer organisations. METHODS: Recruited 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. RESULTS: Seventy-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). CONCLUSION: Research 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.

Time-based prospective memory in children and adolescents with traumatic brain injury: Impact of working memory demands.

OBJECTIVE: Difficulties with prospective memory are frequently reported following pediatric traumatic brain injury (TBI), but rarely researched. We aimed to (i) investigate time-based prospective memory post-pediatric TBI; (ii) examine whether time-based prospective memory is differentially impacted by the demand placed on working memory; and (iii) explore which components of working memory (viz., central executive, phonological loop, and visuospatial sketchpad) are involved in time-based prospective memory under low and high cognitive load following pediatric TBI. METHOD: Thirty-nine children and adolescents (20 survivors of moderate-severe TBI and 19 healthy controls) completed (i) a newly developed time-based prospective memory task (TBPMT), embedded in an ongoing lexical-decision task, with two conditions: low and high working memory load; and (ii) tests of working memory components from the Automated Working Memory Assessment. RESULTS: Compared to controls, participants with TBI had significantly lower prospective memory accuracy on the TBPMT across working memory loads (low, high). In contrast, the groups did not differ in time monitoring or accuracy on the ongoing task. In the TBI group, higher scores on tests of the central executive (but not phonological loop or visuospatial sketchpad) were associated with higher prospective memory accuracy and time monitoring (controlling for age). CONCLUSIONS: Time-based prospective memory is impaired following moderate-severe pediatric TBI, irrespective of the level of working memory demand. Our findings suggest that children and adolescents with TBI may be at risk of failing to perform future intentions at the right time in daily life, especially for individuals identified as having deficits in central executive functioning. (PsycINFO Database Record

Moving beyond 'not enough time': factors influencing paediatric clinicians' participation in research.

BACKGROUND: Increasing the amount of clinical research that occurs in healthcare settings has been identified as an important mechanism to improve healthcare outcomes. While clinicians are key persons in achieving this aim, research participation amongst clinicians is generally limited. AIMS: To identify the factors (barriers and facilitators) influencing clinician research participation and determine how professional culture impacts on these factors. METHODS: Forty clinicians working at a tertiary children's hospital participated in six discipline-specific focus groups. Thematic analysis was performed using an inductive process based in grounded theory. RESULTS: Four major themes (cultural factors, personal factors, resources and solutions) and 16 subthemes were identified. Participants described how the current health system discourages clinician research. They reported that their research participation requires personal sacrifice of their own time; income or career progression. Research participation was seen to compete with other priorities in clinicians' workload and is disadvantaged because of the primacy of clinical work and the lack of immediate tangible benefit from research projects. Solutions suggested by our participants included better alignment of clinical and research goals, improved availability of research mentors and collaborative opportunities. Nurses and allied health professionals reported a changing professional culture that values research. Only doctors identified research participation to be important for career progression. CONCLUSIONS: For clinician research participation to flourish, significant changes in healthcare structure and priorities will be required that result in research becoming more embedded in healthcare delivery. Initiatives to improve collaboration between clinicians and universities may also support these aims.

Computerized Working Memory Training for Children with Moderate to Severe Traumatic Brain Injury: A Double-Blind, Randomized, Placebo-Controlled Trial.

Pediatric traumatic brain injury (TBI) places children at risk for deficits in working memory (WM; comprising a central executive [CE], and two storage systems: phonological loop [PL] and visuospatial sketchpad [VSSP]), which is strongly related to attention and academic skills in childhood. This study aimed to examine whether different components of WM can be improved following adaptive WM training (Cogmed) and whether improvements in WM generalize to other cognitive (attention) and academic skills (reading and mathematics) in children with TBI. Twenty-seven children with moderate to severe TBI were randomized to adaptive (Cogmed; n = 13) or non-adaptive training (active placebo; n = 14) and evaluated at baseline, post-training, and 3-months follow-up. Three children in the adaptive group and one child in the non-adaptive group withdrew from the study before completion of training. Complete case (CC) and intention-to-treat (ITT) analyses were conducted. Children in the adaptive group demonstrated significantly greater gains on select WM tasks (VSSP, but not PL or CE) from pre- to post-training (pre-post) and pre-training to follow-up (pre-follow-up; CC and ITT analyses). No gains were found on tests of attention. Adaptive training resulted in significantly greater gains on select academic skills (reading, but not mathematics): reading comprehension pre-post-training (ITT analyses) and reading accuracy pre-follow-up (CC and ITT analyses). This first, to our knowledge, study to examine the efficacy of adaptive WM training for children with TBI provides preliminary evidence of near and far transfer of training to WM and academic skills, respectively.

Cognitive remediation of attention deficits following acquired brain injury: A systematic review and meta-analysis.

BACKGROUND: Attention deficits are common after acquired brain injury (ABI) and adversely impact academic, vocational and social outcomes. The role of cognitive interventions in post-ABI attention rehabilitation remains unclear. OBJECTIVE: To evaluate effectiveness of cognitive interventions in treating attention deficits following ABI and to explore differences in treatment effect between ABI etiologies. METHODS: MEDLINE, EMBASE, PsycINFO and CENTRAL databases were searched for randomized controlled trials (RCTs). Studies were selected by three reviewers. Study quality was assessed using Cochrane Collaboration tool for RCTs. Effect sizes (Hedge's g) for each attentional domain were meta-analyzed with subgroup analysis by ABI etiology. RESULTS: Twelve RCTs with 584 participants were included, representing individuals with stroke, traumatic brain injury (TBI) and CNS-impacting malignancy. Cognitive rehabilitation improved divided attention in stroke survivors (g 0.67; 95% confidence interval, 0.35-0.98; p <  0.0001) but not other ABI populations. Sustained, selective and alternating attention, and inhibition were not significantly improved in any ABI population. Follow-up data showed no evidence of long-term benefit. CONCLUSION: Cognitive rehabilitation resulted in short-term improvements in divided attention following stroke, but not after TBI or CNS-impacting malignancy. Cognitive interventions did not significantly improve other attentional domains in participants with stroke, TBI or CNS-impacting malignancy.