Pediatric Patient-Reported Outcomes Measurement Information Research Articles

Multi-omics analysis of the gut microbiome and metabolites associated with the psychoneurological symptom cluster in children with cancer receiving chemotherapy

BackgroundChildren with cancer receiving chemotherapy commonly report a cluster of psychoneurological symptoms (PNS), including pain, fatigue, anxiety, depression, and cognitive dysfunction. The role of the gut microbiome and its functional metabolites in PNS is rarely studied among children with cancer. This study investigated the associations between the gut microbiome–metabolome pathways and PNS in children with cancer across chemotherapy as compared to healthy children.MethodsA case–control study was conducted. Cancer cases were recruited from Children’s Healthcare of Atlanta and healthy controls were recruited via flyers. Participants reported PNS using the Pediatric Patient-Reported Outcomes Measurement Information System. Data for cases were collected pre-cycle two chemotherapy (T0) and post-chemotherapy (T1), whereas data for healthy controls were collected once. Gut microbiome and its metabolites were measured using fecal specimens. Gut microbiome profiling was performed using 16S rRNA V4 sequencing, and metabolome was performed using an untargeted liquid chromatography–mass spectrometry approach. A multi-omics network integration program analyzed microbiome–metabolome pathways of PNS.ResultsCases (n = 21) and controls (n = 14) had mean ages of 13.2 and 13.1 years. For cases at T0, PNS were significantly associated with microbial genera (e.g., Ruminococcus, Megasphaera, and Prevotella), which were linked with carnitine shuttle (p = 0.0003), fatty acid metabolism (p = 0.001) and activation (p = 0.001), and tryptophan metabolism (p = 0.008). Megasphaera, clustered with aspartate and asparagine metabolism (p = 0.034), carnitine shuttle (p = 0.002), and tryptophan (p = 0.019), was associated with PNS for cases at T1. Gut bacteria with potential probiotic functions, along with fatty acid metabolism, tryptophan, and carnitine shuttle, were more clustered in cancer cases than the control network and this linkage with PNS needs further studies.ConclusionsUsing multi-omics approaches, this study indicated specific microbiome–metabolome pathways linked with PNS in children with cancer across chemotherapy. Due to limitations such as antibiotic use in cancer cases, these findings need to be further confirmed in a larger cohort.

Patient-Reported Outcomes Measurement Information System Pediatric Symptom Profiles of Children With Cancer in China: A Latent Profile Analysis.

Unpleasant symptoms are common in children with cancer. However, research identifying subgroups of children with cancer who experience similar levels of self-reported symptoms in China is limited. This study aimed to classify the symptom profiles of children with cancer and detect the possible predictors of the profiles and their effect on children's quality of life (QoL). A total of 272 children aged 8 to 17 years completed the Chinese version of the Pediatric Patient-Reported Outcomes Measurement Information System short form measures, the Pediatric QOL Inventory general core and cancer modules. Latent profile analysis was used to identify symptom profiles, and ordinal logistic regression and analysis of variance were used to examine predictors of symptom profile membership and profile differences on QoL. The best fit was a 3-profile model: low, moderate, and severe symptom distress. Children who had been inpatients in the past 7 days and were currently under treatment are more likely to have severe symptoms. Participants in the low symptom distress profile reported significantly greater QoL than those in the other profiles. Children with cancer are heterogeneous in their experience of symptoms. Children's characteristics, such as inpatient history and treatment status, are predictors of profiles; different symptom profiles are associated with QoL. This study identified distinct groups of patients who predictably experience higher symptoms and their predictors, which could help to place children within a profile and perhaps allow nurses to provide targeted supportive care to match children's specific symptom profile.

Psychometric properties and CAT performance of the PROMIS pediatric sleep disturbance, sleep-related impairment, and fatigue item banks in Dutch children and adolescents.

This study's aim is to evaluate the psychometric properties of the pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) sleep disturbance (SD), sleep-related impairment (SRI), and fatigue item banks in Dutch children and adolescents since they are yet to be validated in this population. Children and adolescents aged 8-18 years old (n = 1,325), representative of the Dutch general population, were invited. The following psychometric properties of both item banks were assessed: structural validity by fitting a graded response model (GRM) for which assumptions were checked and assessing item fit, reliability, and efficiency for the full-length item bank, short forms, and computerized adaptive test (CAT). Mean T scores and cutoff scores for mild, moderate, and severe scores were determined. A total of 527 children (response rate 39.7%) were included. SD did not meet the assumption of unidimensionality. The SRI and fatigue item banks showed sufficient structural validity. Three items showed GRM misfit; SRI item w026c and fatigue items 3224R1r and 4191R1r. Both item banks measured reliable (> .90) at the mean of the population and 2SD in the clinical direction. CATs outperformed short forms in efficiency. Mean T scores for the Dutch population were: SRI 47.5 (SD = 10.0) and fatigue 39.8 (SD = 12.4). Cutoffs included SRI minimal ≥ 34.7, moderate ≥ 55.6, severe ≥ 63.2 and fatigue minimal ≥ 23.9, moderate ≥ 49.9, severe ≥ 61.3. PROMIS pediatric SRI and fatigue item banks, short forms, and CAT showed sufficient structural validity and reliability in the Dutch population. Dutch reference values are provided. More research is needed for the PROMIS SD item bank. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

COVID-19 Pandemic Associated With Increased Self-reported Depressive Symptoms in Patients With Congenital Craniofacial Diagnoses.

ObjectiveThe current study investigated the influence of the coronavirus (COVID-19) pandemic on patients with congenital craniofacial diagnoses.MethodsPatients (n = 66) with craniofacial diagnoses aged between 8 and 17 were prospectively evaluated with longitudinal psychosocial assessments using the anger, anxiety, depressive symptoms, and peer relationships instruments within the pediatric Patient-Reported Outcomes Measurement Information System (PROMIS). The COVID-19 cohort (n = 33) included patients with assessments within 2 years prior to the pandemic (t0) and during the pandemic (t1; March 2020 to March 2021). An age-matched comparison cohort (n = 33) with similar demographics and diagnoses included patients assessed twice over 3 years prior to the pandemic.ResultsAll PROMIS measures were in the average range clinically for both groups across time points. However, the COVID-19 group reported a significant increase in depressive symptoms during the pandemic (t1) compared to pre-pandemic (t0) scores (48.2 ± 10.1 vs 44.3 ± 9.4, P = .04, d = −0.37), while the comparison group did not demonstrate any differences in psychosocial functioning between t0 and t1. For the COVID-19 cohort, only the pandemic timeframe (r = 0.21, P = .03) was significantly associated with increased depressive symptom scores, and no other sociodemographic or medical variables were associated with depressive symptoms.ConclusionsSelf-reported depressive symptoms increased during the COVID-19 pandemic in patients with congenital craniofacial diagnoses. Longitudinal studies are needed to elucidate whether such changes will be persistent or compound known variables associated with psychosocial functioning.

The impact of school life and family involvement on Western China junior high school students\u2019 wellbeing at multidimensional levels

BackgroundThe focus of students’ health concerns has gradually progressed from the single factor of physical health to comprehensive health factors, and the physical and mental health of students are now generally considered together. This study focuses on exploring the status of junior high school students’ physical health and their subjective health assessment with the major societal factors that affect students’ lives: School Life and Family involvement. In addition, we explore the main factors influencing students’ subjective health.MethodsA cross-sectional survey was conducted with 190 Tibetan junior high school students in the Maozhuang Township. The intentional sampling was used to choose the research object. The structured questionnaire comprised four parts, namely social and demographic information, family condition, school life, and subjective health quality which was assessed by PROMIS (Chinese version of the Pediatric Patient-Reported Outcomes Measurement Information System).ResultThe average height and weight of boys and girls are statistically different (p-values of 0.026 and 0.044, respectively), but there is no statistically significant difference in BMI (Body Mass Index) between boys and girls (p-value of 0.194). The average values of the five dimensions of depression, anger, anxiety, fatigue, and peer relationships in the PROMIS of the research subjects were 58.9 ± 5.3, 53.3 ± 8.0, 58.1 ± 7.3, 52.8 ± 8.0, 39.3 ± 6.6. In the demographic dimension, the grade was the main factor influencing anger (p < 0.01) and fatigue (p < 0.01), while gender was related to peer relationships (p = 0.02). In the family dimension, the father’s educational level was related to peer relationships (p = 0.05), while the family financial situation was related to depression (p = 0.01). In the school life dimension, relationship with classmates was found to affect anger (p = 0.05), while homework was related to anxiety (p = 0.02) and fatigue (p = 0.05).Conclusionthe physical health index BMI and subjective health evaluation of students are worse than students of more developed areas in China. Their family environment and school life all have varying degrees of impact on the five subjective health outcomes. There are differences in gender and grade level. The government and society need to pay more attention to the physical and mental health of students in remote and underdeveloped areas and improve their health through a student nutrition plan and the establishment of mental health offices.

Generation and Validation of the Patient-Reported Outcome Measurement Information System Itch Questionnaire–Child (PIQ-C) to Measure the Impact of Itch on Life Quality

Itch compromises QOL, but most itch assessments focus only on itch intensity. We aimed to develop and validate a comprehensive Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric measure for itch symptoms and itch impact, defined as the effect specifically of itch on physical, mental, and social health, all of which can affect life quality. After literature review, concept elicitation and cognitive interviews with parents and children with itch, and repeated content-expert review, an item pool was generated and refined. The pool was calibrated with data from 499 children with pruritus using exploratory and confirmatory factor analyses, item response theory, and item fit analysis. The resultant 45-item bank, PROMIS Itch Questionnaire-Child (PIQ-C), showed good convergent and discriminant validity in 181 children aged 8‒17 years, discriminating children with different levels of severity, and was responsive to change. Strong correlations (rho ≥ 0.60) were observed with pain and sleep measures, and moderate correlations were observed with other pediatric Patient-Reported Outcomes Measurement Information System measures. Patient-Reported Outcomes Measurement Information System Itch Questionnaire-Child comprehensively measures itch intensity and burden, providing an itch-specific alternative for assessing life quality. The independent calibration of each item/question allows for flexibility in generating short forms or computerized adaptive testing for efficient use in research and office practice.

Swedish translation and cross-cultural adaptation of eight pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)\xae

BackgroundThis study is part of the Swedish initiative for the establishment of standardized, modern patient-reported measures for national use in Swedish healthcare. The goal was to translate and culturally adapt eight pediatric Patient-Reported Outcomes Measurement Information System (PROMIS®) item banks (anger, anxiety, depressive symptoms, family relationships, fatigue, pain interference, peer relationships and physical activity) into Swedish.MethodsAuthorization to translate all currently available pediatric PROMIS item banks (autumn, 2016) into Swedish was obtained from the PROMIS Health Organization. The translation followed the Functional Assessment of Chronic Illness Therapy translation recommendations with one major modification, which was the use of a bilingual multi-professional review workshop. The following steps were applied: translation, reconciliation, a two-day multi professional reviewer workshop, back translation, and cognitive debriefing with eleven children (8–17 years) before final review. The bilingual multi-professional review workshop provided a simultaneous, in-depth assessment from different professionals. The group consisted of questionnaire design experts, researchers experienced in using patient-reported measures in healthcare, linguists, and pediatric healthcare professionals.ResultsAll item banks had translation issues that needed to be resolved. Twenty-four items (20.7%) needed resolution at the final review stage after cognitive debriefing. The issues with translations included 1. Lack of matching definitions with items across languages (6 items); 2. Problems related to language, vocabulary, and cultural differences (6 items); and 3. Difficulties in adaptation to age-appropriate language (12 items).ConclusionsThe translated and adapted versions of the eight Swedish pediatric PROMIS item banks are linguistically acceptable. The next stage will be cross-cultural validation studies in Sweden. Despite the fact that there are cultural differences between Sweden and the United States, our translation processes have successfully managed to address all issues. Expert review groups from already-established networks and processes regarding pediatric healthcare throughout the country will facilitate the future implementation of pediatric PROMIS item banks in Sweden.

QS6: Developing The Psychosocial Growth Chart: Prospective Longitudinal Psychosocial Functioning Of Children With Craniofacial Anomalies

Background:While improvement in quality of life has long been the ultimate goal in the care of children born with craniofacial anomalies, the intersection between surgical care and psychosocial functioning has not been well understood. A major reason for this discrepancy is the lack of consistent, systematic, validated, and quantitative assessments of psychosocial functioning incorporated as standard of care. Traditional screening within multi-disciplinary teams has relied upon qualitative evaluations by pediatricians, social workers, and psychologists. However, qualitative exams do not allow for the comparison of psychosocial outcomes accurately over time. One of the first steps in establishing psychosocial functioning as a measured health outcome in children with craniofacial anomalies is to chart their typical psychosocial development longitudinally. Our group previously reported that children with craniofacial anomalies are at increased risk for psychosocial dysfunction from ages 8-10 in a cross-sectional analysis. In this work, we evaluate the longitudinal changes over 5 years of the original cohort of children between ages 8-10 as an initial pilot study to develop a psychosocial growth chart for children with craniofacial anomalies.Methods:From 2015 to 2020, children with craniofacial anomalies from the University of California Los Angeles were prospectively evaluated using the Pediatric Patient-Reported Outcomes Measurement Information System to assess anger, anxiety, depression, and peer relationships. Demographics and patient characteristics were also recorded. Changes in psychosocial functioning from ages 8-14 were evaluated using linear regression analyses, and responses at ages 8-10 were compared to responses at ages 11-14 using paired samples t tests.Results:Overall, 29 patients were assessed longitudinally yielding a total of 97 data points (3.34 ± 1.45 per patient), of which 23 patients were surveyed at both ages 8-10 and ages 11-14 yielding 87 data points (3.78 ± 1.24 per patient). Primary diagnosis included cleft lip and/or palate (n = 13), microsomia (n = 6), and others (n = 10). There was a decreasing linear trend from ages 8-14 for anger, anxiety, and depression among all 29 patients. In particular, increasing age was a significant negative predictor of anger (β = -0.25, p = 0.01). Psychosocial functioning improved overall when comparing the responses from ages 8-10 to ages 11-14 among the 23 patients, as characterized by trends of decreased anger, anxiety, and depression and improved peer relationships. In subset analysis, children with cleft lip and/or palate reported significantly higher anxiety symptoms at ages 8-10 (52.1 ± 9.7) than at ages 11-14 (47.1 ± 9.5, p = 0.02). No differences in psychosocial functioning were found when patients were stratified by insurance type, family language, ethnicity, or sex.Conclusions:The current longitudinal study of psychosocial functioning in children with craniofacial anomalies demonstrates age-related changes in concordance with our previous cross-sectional work. The current study serves as the initial pilot study for developing a psychosocial growth chart for children with craniofacial anomalies that may be incorporated as standard of clinical care. Future directions include expansion of longitudinal analyses with potential stratification based on diagnostic subsets and evaluation of children without medical diagnoses for comparison.

Bedside Ultrasound Conducted in Kids with distal upper Limb fractures in the Emergency Department (BUCKLED): a protocol for an open-label non-inferiority diagnostic randomised controlled trial

BackgroundChildren frequently present to the emergency department (ED) with forearm injuries and often have x-rays to determine if there is a fracture. Bedside ultrasound, also known as point-of-care ultrasound (POCUS), is an alternative diagnostic test used to rapidly diagnose a fracture at the time of examination, without exposing children to ionising radiation. Prospective studies have demonstrated high agreement between POCUS and x-ray findings. However, whether the initial imaging modality affects the patient’s medium-term physical function is unknown.MethodsThis is a multicentre, open-label, non-inferiority randomised controlled trial conducted in Australian EDs. Recruitment will continue until 112 children with distal forearm injuries (including 48 buckle fractures) per trial arm have achieved the primary outcome measure. Patients aged 5–15 years presenting with an isolated, acute, clinically non-angulated, distal forearm injury with suspected fracture will have their initial diagnostic approach randomised to either POCUS, performed by a credentialled practitioner, or x-ray imaging. If a cortical breach fracture is identified on POCUS, the patient will receive x-rays and have usual care. If a buckle fracture is identified, the patient will have their forearm placed in a splint and be discharged home. Patients will be followed up at 1, 4 and 8 weeks. The primary outcome is upper limb physical function at 4 weeks, as determined by the Pediatric Upper Extremity Short Patient-Reported Outcomes Measurement Information System (PROMIS) tool. Secondary outcomes include healthcare costs, satisfaction, pain, complications, rates of imaging, ED length of stay and diagnostic accuracy.DiscussionIf POCUS is non-inferior to x-ray in terms of patient’s medium-term physical function, it may have an effect on overall health care resource use, including the number of x-ray performed and earlier ED discharge. Although prospective studies have confirmed the accuracy of POCUS, this will be the first RCT to assess non-inferiority of functional outcomes of POCUS to diagnose non-angulated paediatric distal forearm injuries, compared to x-ray. POCUS may be of particular importance in settings where access to x-ray imaging can be limited either during or after-hours, as it can aid the triaging and management of patients.Trial registrationProspectively registered with the ANZCTR on 29 May 2020 (ACTRN12620000637943).

Self-Reported Fatigue in Chinese Children and Adolescents During Cancer Treatment.

Background: Fatigue is a prevalent and distressing symptom in children and adolescents with cancer. Objectives: This study aimed to (1) investigate the current fatigue status reported by Chinese children and adolescents with cancer during active cancer treatment and (2) examine whether sociodemographic information, disease and treatment information, co-occurring symptoms, function and related clinical data are significantly associated with fatigue according to the biopsychosocial model. Methods: Participants were children aged 8-17 years, who had undergone treatment for cancer at four hospitals in China. Children completed the Chinese version of the Pediatric Patient-Reported Outcomes Measurement Information System short forms. Results: In total, 187 children (33.16% female, mean age 10.28 years) participated. The mean T-score for child-reported fatigue was 48.52 (34-72). Multiple linear regression analysis showed that fatigue in pediatric active cancer treatment could be significantly predicted by greater child-reported pain interference (β = 0.391, p < .001), greater depressive symptoms (β = 0.443, p < .001), and reduced mobility (β = -0.226, p = .004) (adjusted R2 = 0.613, F = 16.476, p < .001). Conclusions: Children and adolescents with cancer experience multiple, intersecting troubling symptoms during their treatment. There is a need to attend to the biopsychosocial aspects of care for children and adolescents during active cancer treatment. To reduce pediatric oncology patients' fatigue level, clinicians could develop culturally sensitive interventions to alleviate children's pain interference, treat depressive symptoms, and maximize their physical mobility.

Psychometric Properties of the Pediatric Patient-Reported Outcomes Measurement Information System Item Banks in a Dutch Clinical Sample of Children With Juvenile Idiopathic Arthritis.

ObjectiveTo assess the psychometric properties of 8 pediatric Patient‐Reported Outcomes Measurement Information System (PROMIS) item banks in a clinical sample of children with juvenile idiopathic arthritis (JIA).MethodsA total of 154 Dutch children (mean ± SD age 14.4 ± 3.0 years; range 8–18 years) with JIA completed 8 pediatric version 1.0 PROMIS item banks (anger, anxiety, depressive symptoms, fatigue, pain interference, peer relationships, physical function mobility, physical function upper extremity) twice and the Pediatric Quality of Life Inventory (PedsQL) and the Childhood Health Assessment Questionnaire (C‐HAQ) once. Structural validity of the item banks was assessed by fitting a graded response model (GRM) and inspecting GRM fit (comparative fit index [CFI], Tucker‐Lewis index [TLI], and root mean square error of approximation [RMSEA]) and item fit (S‐X2 statistic). Convergent validity (with PedsQL/C‐HAQ subdomains) and discriminative validity (active/inactive disease) were assessed. Reliability of the item banks, short forms, and computerized adaptive testing (CAT) was expressed as the SE of theta (SE[θ]). Test–retest reliability was assessed using intraclass correlation coefficients (ICCs) and smallest detectable change.ResultsAll item banks had sufficient overall GRM fit (CFI >0.95, TLI >0.95, RMSEA <0.08) and no item misfit (all S‐X2 P > 0.001). High correlations (>0.70) were found between most PROMIS T scores and hypothesized PedsQL/C‐HAQ (sub)domains. Mobility, pain interference, and upper extremity item banks were able to discriminate between patients with active and inactive disease. Regarding reliability, PROMIS item banks outperformed legacy instruments. Post hoc CAT simulations outperformed short forms. Test–retest reliability was strong (ICC >0.70) for all full‐length item banks and short forms, except for the peer relationships item bank.ConclusionThe pediatric PROMIS item banks displayed sufficient psychometric properties for Dutch children with JIA. PROMIS item banks are ready for use in clinical research and practice for children with JIA.

Current use of patient-reported outcomes in pediatric limb deformity surgery.

Patient-reported outcome (PRO) instruments are critical to evaluate the natural history of conditions and treatment effects, but have not been well studied in pediatric limb deformity. The goal of this study was to identify and assess the most commonly used PROs in pediatric limb deformity surgery across a representative sample of the recent orthopedic literature. A review was performed from 1 January 2016 to 31 December 2018 in five orthopedic journals previously identified as having the greatest impact: Journal of Pediatric Orthopaedics, Journal of Pediatric Orthopaedics B, Journal of Children's Orthopaedics, The Journal of Bone and Joint Surgery, and The Bone and Joint Journal. Clinical research studies involving pediatric population, operative management of limb deformity, and PRO measures were reviewed. The initial search of 3489 publications found 130 clinical articles involving operative management of pediatric limb deformity. Thirty-one studies (24%) met inclusion criteria, in which a total of 23 different PRO instruments were used. An average of 1.5 PRO instruments was reported per study (range 1-4). No outcome instrument was used by more than five different studies in this review, and no instrument validated in the pediatric population was used by more than three different studies. PROs currently used in pediatric limb deformity surgery are highly heterogeneous, as well as underutilized. Future research is necessary to either validate a current PRO in pediatric limb deformity or to develop a new instrument using pediatric Patient-Reported Outcomes Measurement Information System or Pediatric Outcomes Data Collection Instrument as a benchmark.

Long-Term Effect of Multiple Operations on Psychosocial Function in Teenage Cleft Lip and Palate Patients.

Cleft lip and palate patients undergo a significant number of interventions during their childhood and adolescence. Although the intention of such interventions is to improve psychosocial functioning, there exists a paucity of data on the psychosocial outcomes of the burden of care on cleft children. In this work, the long-term effects of quantity and timing of childhood operations on teenagers with cleft lip and palate were evaluated. Cleft lip and palate patients (aged 14 to 17 years; n = 55) and an age-matched unaffected cohort (n = 14) prospectively enrolled from two institutions were administered the anger, anxiety, and depressive symptoms instruments from the Pediatric Patient-Reported Outcomes Measurement Information System. Total number of operations and operations stratified by age groups (0 to 7, 8 to 10, 11 to 13, and 14 to 17 years) were evaluated in relationship to instrument scores. Descriptive statistics, independent t tests, Pearson correlations, and multiple linear regression analyses were conducted. No differences in overall psychosocial functioning were found between the cleft lip and palate and comparison groups. Total quantity of childhood operations did not correlate to psychosocial functioning of cleft lip and palate teenagers. However, multiple linear regression analyses demonstrated that increased number of operations in the 8- to 10-year-old age range predicted increased anxiety and depressive symptoms in teenagers (β = 0.38, p = 0.009; and β = 0.29, p = 0.03, respectively). It was previously reported by the authors' group that the 8- to 10-year-old age range is an at-risk period for psychosocial distress in children with craniofacial anomalies. Their current work demonstrates that increased number of operations during this time frame may result in long-term consequences in anxiety and depression in cleft lip and palate patients. Risk, II.

Vitamin D Supplementation Improves Health-Related Quality of Life and Physical Performance in Children with Sickle Cell Disease and in Healthy Children.

No study determined if vitamin D supplementation improves health-related quality of life (HRQL) using pediatric Patient-Reported Outcomes Measurement Information System or physical functioning in type SS sickle cell disease (HbSS). Subjects with HbSS (n = 21) and healthy subjects (n = 23) were randomized to daily oral doses (4,000 vs. 7,000 IU) of cholecalciferol (vitamin D3) and evaluated at 6 and 12 weeks for changes in serum 25 hydroxyvitamin D (25(OH)D), HRQL, and physical functioning. In subjects with HbSS, significant reductions in pain, fatigue, and depressive symptoms and improved upper-extremity function were observed. In healthy subjects, significant reductions in fatigue and improved upper-extremity function were observed. Significant improvements in peak power and dorsiflexion isometric maximal voluntary contraction torques were observed in both groups. In subjects with HbSS, improved plantar flexion isometric maximal voluntary contraction torques were observed. Both groups saw significant improvement in their total Bruininks-Oseretsky Test of Motor Proficiency score. Daily high-dose vitamin D supplementation for African American children with and without HbSS improved HRQL and physical performance.

Symptom burden trajectories experienced by patients with brain tumors.

Survivors of childhood brain tumors experience persistent health concerns across their lifespan. In the current study, the authors evaluated changes in symptom burden over the course of 12months using pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) measures. Data from 202 survivors aged 8 to 21years and 262 parents of survivors who were aged 5 to 21years were analyzed. All completed a PROMIS Cognition short form and computerized adaptive tests of pediatric Anxiety, Depressive Symptoms, Fatigue, Mobility, Upper Extremity Function, and Peer Relationships. Approximately one-half of participants (223 participants: 97 survivors of childhood brain tumors and 126 parents) completed the 12-month follow-up. Linear mixed-effects models evaluated group-level symptoms over time. Cox proportional hazard models explored whether symptoms predicted survival, and latent class growth analysis investigated patterns of individual-level symptom changes over time. Linear mixed-effects models demonstrated that patient-reported Cognition and parent-reported Anxiety worsened over time. Latent class growth analysis results indicated that patient and parent reports diverged, both with regard to the number of classes identified and in the trends of these classes. Parents and patients reported similar patterns of depression over time. For the other areas, parents either were more likely to observe different patterns (Peer Relationships and Mobility) or less likely to observe different patterns (Upper Extremity Function, Cognition, Anxiety, and Fatigue). Baseline patient-reported Mobility and Upper Extremity Function were found to be associated with survival. Survivors of childhood brain tumors demonstrated different trajectory patterns of symptom burden. Along with baseline functioning status and days since treatment, patient-reported Mobility and Upper Extremity Function were associated with survival, suggesting a possible role for patient-reported outcomes in clinical care, especially individualized, tailored assessments such as PROMIS.

Pediatric Patient-Reported Outcomes Measurement Information System is Equivalent to Scoliosis Research Society-22 in Assessing Health Status in Adolescent Idiopathic Scoliosis: Erratum.

Pediatric Patient-Reported Outcomes Measurement Information System is Equivalent to Scoliosis Research Society-22 in Assessing Health Status in Adolescent Idiopathic Scoliosis: Erratum.

Pediatric Patient-Reported Outcomes Measurement Information System is Equivalent to Scoliosis Research Society-22 in Assessing Health Status in Adolescent Idiopathic Scoliosis.

This was a correlational study. Determine the range of pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) scores for patients treated for adolescent idiopathic scoliosis (AIS) and assess correlation with Scoliosis Research Society-22 (SRS-22) domain scores. Patient reported outcome (PRO) measures are important metrics for measuring health status in diverse patient populations. PROMIS is increasingly being used in orthopedic practice. Existing literature compares PROMIS measures favorably to legacy measures in numerous adult orthopedic conditions. This study sought to define the range of PROMIS mobility, pain interference, and peer relationships scores for adolescents treated for AIS. Furthermore, correlations between these domains and equivalent domains in the legacy PRO, SRS-22, were determined. Pediatric PROMIS and SRS-22 were obtained at routine clinical visits for AIS at a tertiary care children's hospital from January 2017 to October 2017. Spearman correlations were performed to examine the associations between three pediatric PROMIS domains and the SRS-22 domains. Only patients who completed both PRO measures were included in the analyses. Radiographic measurements were performed at each visit assessing sagittal and coronal deformity and overall spinal balance. One hundred thirteen patients with a mean age of 14.4 (standard deviation [SD] = 2.1) years completed the assessments. The mean pediatric PROMIS domain scores included: mobility 50.9 (interquartile range [IQR] 36.2-65.6); pain interference 45.9 (IQR 28.9-62.9); peer relations 52.6 (IQR 38.3-64.9).PROMIS mobility was strongly correlated with SRS-22 function (r = 0.65; P < 0.001). PROMIS pain interference was strongly correlated with SRS-22 pain (r = 0.70; P < 0.001). PROMIS peer relations was moderately correlated with SRS-22 Mental Health (r = 0.41; P < 0.001) and self-image (r = 0.34; P < 0.001). In AIS patients pediatric PROMIS pain interference and mobility correlate strongly with SRS-22 pain and function domains, while PROMIS peer relationships demonstrates moderate correlations with SRS-22 mental health and self-image. 2.

SINGLE-LEG HOP PERFORMANCE IS A PREDICTOR FOR PATIENT-REPORTED OUTCOMES FOLLOWING A LOWER EXTREMITY INJURY

Background: The single-leg hop for distance (SLHOP) is a commonly used functional performance measure to determine return-to-play readiness. However, it is unknown if functional performance at return-to-play can predict future patient outcomes. Therefore, the purpose of this study was to determine if SLHOP performance and symmetry at return-to-play following a lower extremity injury would predict lower extremity patient-reported outcomes six months post-injury. Methods: Two-hundred thirty-six adolescent athletes (15.7±1.4 years, 171.1±7.6 cm, 70.3±15.3 kg) were recruited for this study. If an individual sustained a non-surgical lower extremity injury during their sports season and missed three days of sports participation they were eligible for follow-up functional and patient outcome assessment Thirty-two adolescent athletes were eligible and completed the follow-up testing (15.0±1.1 years, 166.5±4.9 cm, 67.3±10.4 kg; 14 American football, 8 volleyball, 4 girls’ basketball, 6 boys’ basketball athletes). The SLHOP was completed by affixing a tape measure to the ground and instructing the participant to hop on one leg as far as possible. Each participant performed three trials per leg at return-to-play (alternating legs). To be counted as a successful trial the participant maintained postural stability for 2 seconds after the landing and the contralateral leg was not allowed to touch the ground. The Pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) Lower Extremity scale was completed six months after return-to-play as the patient-reported outcome measure. A stepwise multiple linear regression was conducted to predict PROMIS Lower Extremity scale score from SLHOP distance on the injured and uninjured leg (cm), and limb symmetry (%). Results: At step one of the analysis, injured limb SLHOP distance was entered into the regression equation and was significantly related to the PROMIS Lower Extremity scale F(1,31)=20.8, p&lt;.001. The multiple correlation coefficient was 0.79, indicating approximately 62% of the variance of the PROMIS Lower Extremity scale scores could be accounted for by the injured limb SLHOP distance. Specifically, for every increase in one cm of SLHOP performance there would be an increase of 0.6 points on the PROMIS Lower Extremity scale. Uninjured limb SLHOP distance and limb symmetry did not enter into the equation at step two of the analysis (p&gt;.05). Conclusion: The SLHOP conducted at time of return-to-play following a lower extremity injury can predict lower extremity patient-reported outcomes six months later. This indicates that clinicians may be able to use the SLHOP following an injury to not only determine return-to-play readiness but a successful long-term outcome.

Chinese Version of Pediatric Patient-Reported Outcomes Measurement Information System Short Form Measures: Reliability, Validity, and Factorial Structure Assessment in Children With Cancer in China.

The Pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) was developed to measure symptoms and functions of children with a variety of chronic diseases. As the Chinese version of pediatric PROMIS (C-Ped-PROMIS) measures was developed, the measurement properties of C-Ped-PROMIS have not been demonstrated. The aim of this study was to examine the reliability, validity, and factorial structure of the C-Ped-PROMIS measures in children with cancer in China. A total of 272 children and adolescents were recruited from 3 hospitals in China. The 8 C-Ped-PROMIS measures and Pediatric Quality of Life Inventory General Core Module and Cancer Module were administered in a cross-sectional design. Known-group validity, concurrent validity, and item and scale reliability of these 8 measures were examined by using SPSS 21.0, and factorial structures were tested by using confirmatory factor analysis with Mplus 7.1. All 8 C-Ped-PROMIS measures showed good known-group validity as hypothesized (P < .05) and good concurrent validity measured by significant correlations with the Pediatric Quality of Life Inventory General Core Module and Cancer Module; the correlation coefficients ranged from r = 0.519 to r = 0.655, except for peer relationship with r = 0.255 and r = 0.136, respectively. The Cronbach's α of C-Ped-PROMIS ranged from .758 to .910, and model-estimated scale reliabilities ranged from 0.740 to 0.905. The confirmatory factor analysis models of each measure fit data very well. All 8 C-Ped-PROMIS measures have a valid factorial structure as theoretically defined with good reliability and validity. The C-Ped-PROMIS can be readily used to measure symptoms and functions of children and adolescents with cancer in China.

Development of a Smartphone Application to Monitor Pediatric Patient-Reported Outcomes.

Patient-reported outcomes are increasingly emphasized in clinical trials and population health studies. Our research team developed a smartphone app to track patient-reported outcomes of children with chronic diseases. The purpose of this study is to develop a patient-reported outcome reporting app and evaluate its usability. A multidisciplinary research team including health services researchers, pediatric nurses, and software engineers worked collaboratively in developing the patient-reported outcome app and administration portal. Group discussions and several rounds of feedback and modification were used. Ten pediatric patients with cancer, five parents, and two nurses participated in the usability study. We conducted content analyses in app development and usability evaluation. The app collected demographic information and patient-reported outcomes. Patient-reported outcomes were collected by Chinese versions of pediatric Patient-Reported Outcomes Measurement Information System Short Forms and Patient-Reported Outcomes Measurement Information System Parent Proxy Report Scales for Children. Pediatric patients aged 8 to 17 years and parents with a 5- to 7-year-old pediatric child used different age-appropriate questionnaires. The Web-based administration portal helped to manage demographic information, questionnaires, administrators, and survey-conducting organizations. The users liked the app. All participants felt that this app was easy to use and the interfaces were friendly to children. Nurses thought the administration portal interfaces were simple and the data were convenient to download for further analysis. We conclude that the app and its administration portal meet researchers and clinical nurses' demand and have potential to promote patient-reported outcomes in assessing quality of life and symptoms of pediatric patients.