A systematic review of self and observer assessment of pain and related functioning in youth with brain-based developmental disabilities.

ABSTRACT: Pain experiences of youth with brain-based developmental disabilities are often overlooked and/or misinterpreted, increasing the risk for poor or inadequate pain assessment and management. Ample measures exist to assess acute and chronic pain, yet their utility and frequency of use in youth with brain-based developmental disabilities is unclear and available measures do not have strong measurement properties for this diverse group. This systematic review identified the scope of self-reported and observer-reported pain assessment in studies of youth (aged 3-24 years) with brain-based developmental disabilities (phase 1) and summarized other measures of pain-related functioning for acute and chronic pain (ie, physical, emotional, social, sleep, and quality of life, within the subset of quantitative studies focused primarily on pain, phase 2). A comprehensive search for English-language studies was conducted in August 2022 in Web of Science, CINAHL, MEDLINE, Cochrane CENTRAL, EMBASE, and APA PsychINFO (PROSPERO registration: CRD42021237444). A total of 17,029 unique records were screened. Of the 707 articles included in phase 1, most assessed chronic pain (n = 314; 62.0%) and primarily used observer-report (n = 155; 31%) over self-report (n = 67; 13%). Of the 137 articles included in phase 2, other outcomes assessed alongside pain intensity included motor ability (16.8%), adaptive functioning (11%), quality of life (8%), pain interference (6.6%), mental health (5.8%), and communication ability (2.9%). Cerebral palsy was the most common population in both phase 1 (n = 343; 48.5%) and phase 2 (n = 83; 59.7%). This review provides a foundational understanding of pain assessment in brain-based developmental disabilities and highlights continued inequities in holistic pain assessment for this population.

Reframe the pain: Divided attention and positive memory reframing to reduce needle pain and distress in children-A feasibility randomized controlled trial.

BACKGROUND: Negative experiences of needle procedures in childhood can lead to medical avoidance and vaccine hesitancy into adulthood. We evaluated the feasibility of two new interventions provided by clinical nurses to reduce the negative impact of vaccinations: divided attention (DA) and positive memory reframing (PMR). METHODS: Children (8-12 years) were randomized into four groups: usual care (UC), DA, PMR or combined (DA + PMR). To evaluate feasibility, we undertook in-depth analysis of video-recorded interventions, nurse experiences (phone interviews) and child/parent memory recall of interventions (phone interviews at 2 weeks post-vaccination). Key clinical outcomes included child and parent ratings of needle-related pain intensity and fear assessed at baseline, immediately post-vaccination and 2 weeks post-vaccination (recalled). RESULTS: A total of 54 child-parent dyads were screened, with 41 included (10/group, except PMR [n = 11]). The interventions were not always completed as intended: 10%-22% of participants received complete interventions and two had adverse events related to protocol breach. Preliminary within-group analyses showed no effects on child/parent pain ratings. However, children in DA + PMR had reduced recalled fear (p = 0.008), and PMR (p = 0.025) and DA + PMR (p = 0.003) had reduced fear of future needles. Parent ratings of child fear were also reduced immediately post-vaccination for UC (p = 0.035) and PMR (p = 0.035). CONCLUSIONS: The interventions were feasible, although enhanced nurse training is required to improve fidelity. Preliminary clinical results appear promising, particularly for reducing needle-related fear. PROTOCOL REGISTRATION: Protocol number ACTRN12618000687291 at ANZCTR.org.au SIGNIFICANCE: Two new nurse-led interventions to reduce negative impacts of vaccinations in children, divided attention and positive memory reframing, were feasible and may reduce needle-related fear. Nurses were able to deliver the interventions in various environments including non-clinical settings (schools). These interventions have potential to facilitate broader dissemination of vaccinations for children in a manner that minimizes distress.

The Impact of the COVID-19 Pandemic on Youth with Chronic Pain and Their Parents: A Longitudinal Examination of Who Are Most at Risk.

OBJECTIVES: Chronic pain and mental illness in youth and parents are poised to reach new heights amidst the societal and healthcare impacts of the COVID-19 pandemic. Evidence from natural disasters (i.e., hurricanes) suggests that a degree of personal impact and individual personality may moderate the effects of high stress events, such as the COVID-19 pandemic, on mental health. METHODS: In a pre-existing cohort of 84 youth with chronic pain (Mage = 14.39; 12-18 years; 67.8% female) and 90 parents (86.7% female), we examined changes in youth pain interference and youth and parent mental health (depression, anxiety) from before to during the first wave of the COVID-19 pandemic, and the influence of personal impact of the pandemic (i.e., financial, familial, health, social, occupational, and educational domains) and individual personality (neuroticism, conscientiousness, extroversion). RESULTS: Overall, youth reported significantly lower pain interference and anxiety as compared to pre-pandemic; however, those more personally impacted by the pandemic reported worsening pain interference and anxiety symptoms. Overall, parents reported greater depressive symptoms as compared to pre-pandemic; however, those more personally impacted by the pandemic reported increased anxiety symptoms. Personality traits (high neuroticism, and low conscientiousness and extroversion) predicted worsened pain and mental health, and exacerbated effects of COVID-19-related personal impact on youth and parent anxiety symptoms. DISCUSSION: Identifying risk and resilience profiles in youth and parents at high risk for worsening pain and mental health may better inform matching interventions to individual need.