Pain-related functional limitations represent an important outcome domain to assess in children and adolescents with chronic pain. The aim of this study was to extend the empirical support of the ...21-item Child Activity Limitations Interview (CALI-21), a well-validated measure of activity limitations, using a large, multisite sample and to develop a brief form of the measure with more interpretable scoring. A sample of 1616 youth and 1614 parents completed the CALI-21 at an initial appointment in 1 of 3 pain specialty clinics in the Midwest or Northwest United States, or as part of a research study after this initial visit. All youth also reported on usual pain intensity. The CALI-21 data from 1236 youth and parents were used in analyses. Results of the exploratory and confirmatory factor analyses supported a common 2-factor structure (Active and Routine factors) for both child- and parent-report versions. Using item reduction, the 9-item measure (CALI-9) was developed with both child and parent versions showing good internal consistency and high cross-informant reliability. Initial validity was shown by the ability of the CALI-9 to distinguish by level of pain intensity. Findings suggest that the CALI-9 is a promising brief tool for the evaluation of pain-related activity limitations in youth with chronic pain and for proxy report by parents. Advantages of the shortened scale include the revised 0 to 100-point scale, which increases interpretability, and further validation of the subscale scoring to assess specific limitations in Active and Routine physical functioning domains.
Summary Diagnosis of essential thrombocythaemia (ET) is challenging in patients lacking JAK2 / CALR / MPL mutations. In a retrospective evaluation of 320 patients with ‘triple‐negative ...thrombocytosis’, we assessed utility of bone marrow histology (90.9% of patients) and myeloid gene panel (MGP, 55.6%). Supportive histology (‘myeloproliferative neoplasm‐definite/probable’, 36.8%) was associated with higher platelet counts and varied between centres. 14.6% MGP revealed significant variants: 3.4% JAK2 / CALR / MPL and 11.2% other myeloid genes. Final clinical diagnosis was strongly predicted by histology, not MGP. 23.7% received cytoreduction (17.6% under 60 years). Real‐world ‘triple‐negative’ ET diagnosis currently depends heavily on histology; we advocate caution in MGP‐negative cases and that specific guidelines are needed.
Offspring of parents with chronic pain may be at risk for poorer outcomes than offspring of healthy parents. The objective of this research was to provide a comprehensive mixed-methods systematic ...synthesis of all available research on outcomes in offspring of parents with chronic pain. A systematic search was conducted for published articles in English examining pain, health, psychological, or family outcomes in offspring of parents with chronic pain. Fifty-nine eligible articles were identified (31 population-based, 25 clinical, 3 qualitative), including offspring from birth to adulthood and parents with varying chronic pain diagnoses (eg, mixed pain samples, arthritis). Meta-analysis was used to synthesize the results from population-based and clinical studies, while meta-ethnography was used to synthesize the results of qualitative studies. Increased pain complaints were found in offspring of mothers and of fathers with chronic pain and when both parents had chronic pain. Newborns of mothers with chronic pain were more likely to have adverse birth outcomes, including low birthweight, preterm delivery, caesarian section, intensive care admission, and mortality. Offspring of parents with chronic pain had greater externalizing and internalizing problems and poorer social competence and family outcomes. No significant differences were found on teacher-reported externalizing problems. The meta-ethnography identified 6 key concepts (developing independence, developing compassion, learning about health and coping, missing out, emotional health, and struggles communicating with parents). Across study designs, offspring of parents with chronic pain had poorer outcomes than other offspring, although the meta-ethnography noted some constructive impact of having a parent with chronic pain.
Objective
American Indians and Alaska Natives (AI/AN) have the highest incidence of cleft lip and palate (orofacial clefts OFCs) when compared to other ethnic groups. We aim to determine the AI/AN ...populations’ proximity and accessibility to American Cleft Palate-Craniofacial Association accredited centers (ACPA centers) for treatment of OFCs. Our hypothesis is an unacceptable proportion of the AI/AN population lacks reasonable accessibility to ACPA centers and comprehensive craniofacial care.
Design
A cross-sectional study of ACPA centers and AI/AN populations were analyzed for possible disparities.
Main Outcome Measurements
ACPA centers were mapped using Geographic Information Systems (GIS) and compared with 2018 census population data and 2017 Tribal Census Tract data to visually display possible disparities. Total annual potential pediatric cleft care need for selected high-density AI/AN populated lands were estimated.
Results
GIS mapping demonstrates geographical isolation of AI/AN populations from ACPA centers. Two states with high AI/AN populated lands (ND, WY) have no ACPA centers. 47.1% of ACPA centers in high AI/AN populated lands have no craniofacial trained surgeons versus 78.9% craniofacial staffed ACPA centers nationally. The potential unmet cleft and craniofacial care need in selected high-density AI/AN populated lands is 1042 children.
Conclusion
AI/AN populations are likely underserved by ACPA centers and by craniofacial fellowship-trained staffed centers. Not addressing OFCs with comprehensive care can lead to worsened outcomes and further marginalization of these children. With future studies, we will be capable of making data-driven, informed decisions to more effectively ensure AI/AN access to comprehensive cleft and craniofacial care.
Physical functioning is often impaired in adolescents with chronic pain, which has largely been demonstrated through subjective self-report measures. Actigraphy uses motion monitoring as an objective ...means for assessing one dimension of physical functioning; physical activity level. This study used subjective and objective measures to assess multiple dimensions of physical functioning in a clinical sample of adolescents with chronic pain (n = 78) and a comparison group of healthy adolescents (n = 59). Individual and pain characteristics were also examined as predictors of actigraphy variables within the chronic pain sample. Results indicated that adolescents with chronic pain demonstrate significant impairment in subjective measures of physical functioning and evidence lower levels of physical activity. Actigraphic measures of physical activity were moderately correlated with self-report measures of physical functioning. Individual characteristics, including adolescent age, sex, and Body Mass Index percentile, were associated with physical activity levels among adolescents with chronic pain. Physical activity represents a distinct dimension of physical functioning. Assessing physical activity may provide additional description of physical functioning among adolescents with chronic pain, and may help identify targets for intervention in this population.
This study demonstrates that adolescents with chronic pain have lower physical activity levels, as measured objectively via actigraphy, as well as poorer subjective reports of physical functioning, compared to healthy adolescents. Actigraphic measurement of physical activity provides objective source data about one dimension of physical functioning.
Parental chronic pain is associated with adverse outcomes in children, but the mechanisms of transmission are largely untested. Mothers with chronic pain (N = 400, M
= 40.3 years, 90.5% White) and ...their children (M
= 10.33 years, 83.3% White, 50.2% female) were recruited in 2016-2018 to test longitudinal pathways of risk transmission from maternal chronic pain to children's psychological symptoms, examining roles of parenting, maternal depression, and child distress tolerance. Maternal pain was associated with positive (β = .28) and pain-specific (β = .10) parenting behaviors. Maternal depression was associated with lower child distress tolerance (β = -.03), which was associated with greater child psychological symptoms (β = -.62). Parenting and maternal pain were not prospectively associated with child outcomes. When considering the dual-generational impacts of chronic pain, physical and psychological functioning should be examined.
Abstract For many drylands, both long‐ and short‐term drought conditions can accentuate landscape heterogeneity at both temporal (e.g., role of seasonal patterns) and spatial (e.g., patchy plant ...cover) scales. Furthermore, short‐term drought conditions occurring over one season can exacerbate long‐term, multidecadal droughts or aridification, by limiting soil water recharge, decreasing plant growth, and altering biogeochemical cycles. Here, we examine how experimentally altered seasonal precipitation regimes in a mixed shrub grassland on the Colorado Plateau impact soil moisture, vegetation, and carbon and nitrogen cycling. The experiment was conducted from 2015 to 2019, during a regional multidecadal drought event, and consisted of three precipitation treatments, which were implemented with removable drought shelters intercepting ~66% of incoming precipitation including: control (ambient precipitation conditions, no shelter), warm season drought (sheltered April–October), and cool season drought (sheltered November–March). To track changes in vegetation, we measured biomass of the dominant shrub, Ephedra viridis , and estimated perennial plant and ground cover in the spring and the fall. Soil moisture dynamics suggested that warm season experimental drought had longer and more consistent drought legacy effects (occurring two out of the four drought cycles) than either cool season drought or ambient conditions, even during the driest years. We also found that E. viridis biomass remained consistent across treatments, while bunchgrass cover declined by 25% by 2019 across all treatments, with the earliest declines noticeable in the warm season drought plots. Extractable dissolved inorganic nitrogen and microbial biomass nitrogen concentrations appeared sensitive to seasonal drought conditions, with dissolved inorganic nitrogen increasing and microbial biomass nitrogen decreasing with reduced soil volumetric water content. Carbon stocks were not sensitive to drought but were greater under E. viridis patches. Additionally, we found that under E. viridis , there was a negative relationship between dissolved inorganic nitrogen and microbial biomass nitrogen, suggesting that drought‐induced increases in dissolved inorganic nitrogen may be due to declines in nitrogen uptake from microbes and plants alike. This work suggests that perennial grass plant–soil feedbacks are more vulnerable to both short‐term (seasonal) and long‐term (multiyear) drought events than shrubs, which can impact the future trajectory of dryland mixed shrub grassland ecosystems as drought frequency and intensity will likely continue to increase with ongoing climate change.
The Functional Disability Inventory (FDI) is a well-established and commonly used measure of physical functioning and disability in youth with chronic pain. Further validation of the measure has been ...called for, in particular, examination of the clinical utility and factor structure of the measure. To address this need, we utilized a large multicenter dataset of pediatric patients with chronic pain who had completed the FDI and other measures assessing pain and emotional functioning. Clinical reference points to allow for interpretation of raw scores were developed to enhance clinical utility of the measure, and exploratory factor analysis was performed to examine its factor structure. Participants included 1300 youth ages 8 to 18 years (mean=14.2 years; 76% female) with chronic pain. Examination of the distribution of FDI scores and validation with measures of depressive symptoms and pain intensity yielded 3 distinct categories of disability: No/Minimal Disability, Moderate Disability, and Severe Disability. Factor analysis of FDI scores revealed a 2-factor solution representing vigorous Physical Activities and non-physically strenuous Daily Activities. The 3-level classification system and factor structure were further explored via comparison across the 4 most commonly encountered pain conditions in clinical settings (head, back, abdominal, and widespread pain). Our findings provide important new information regarding the clinical utility and validity of the FDI. This will greatly enhance the interpretability of scores for research and clinical use in a wide range of pediatric pain conditions. In particular, these findings will facilitate use of the FDI as an outcome measure in future clinical trials.
Having a child with chronic pain impacts a parent's life. Reciprocally, parent cognitive, affective, and behavioral responses to the child's chronic pain can influence the child's pain experience. ...The purpose of this study is to develop a brief self-report screening tool (Parent Risk and Impact Screening Measure PRISM) of parent psychosocial functioning and behavioral responses to child pain. This measure assesses parents' reports of their own stress, health, psychosocial functioning, and disruption in activities due to their child's pain and related disability. In an effort to preliminarily validate this screening tool, we examined the PRISM in relation to existing measures of parent distress, parent behavior, and child functioning. An initial 30-item PRISM was administered to 229 parents of children with persistent pain. Parents also reported on distress, protectiveness, pain catastrophizing and family impact, and youth completed measures of pain, pain-related disability, and quality of life. Item refinement resulted in a final 12-item PRISM tool. The PRISM demonstrates strong internal consistency, and initial support for construct validity was shown by associations with parent distress, protectiveness, and catastrophizing. Results also revealed higher PRISM scores are associated with higher child pain intensity, greater functional disability, and poorer quality of life. Cutoff scores were determined to identify parents at differing levels of risk. The PRISM is a brief and clinically important means of screening parent distress and behaviors associated with child pain-related dysfunction. Further validation will use PRISM in longitudinal studies, particularly testing PRISM scores as a predictor of parent and child outcomes over time.
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