Pediatric Patient-Reported Outcomes Measurement Information System Research Articles

Targeted Muscle Reinnervation for Limb Amputation to Avoid Neuroma and Phantom Limb Pain in Patients Treated at a Pediatric Hospital.

Patients undergoing major limb amputation with TMR were included with minimum one year follow-up and completed questionnaires. Primary clinical outcomes included incidence of symptomatic neuromas, PLP, residual limb pain, narcotic use, and neuromodulator use. A follow-up phone survey was conducted assessing five pediatric Patient Reported Outcomes Measurement Information System (PROMIS) metrics adapted to assess residual limb and PLP. Nine patients (seven male and two female patients, avg. age = 16.83 ± 7.16 years) were eligible. Average time between surgery and phone follow-up was 21.3 ± 9.8 months. Average PROMIS Pediatric t-scores for measures of pain behavior, interference, quality-affective, and quality-sensory for both PLP and residual limb pain were nearly 1 standard deviation lower than the United States general pediatric population. One patient developed a symptomatic neuroma 1 year after surgery. Compared with an adult patient sample reported by Valerio et al, our TMR patients at Nationwide Children's Hospital (NCH) showed similar PLP PROMIS t-scores in pain behavior (50.1 versus 43.9) and pain interference (40.7 versus 45.6). Both pediatric and adult populations had similar residual limb pain including PROMIS pain behavior (36.7 adult versus 38.6 pediatric) and pain interference (40.7 adult versus 42.7 pediatric). TMR at the time of amputation is feasible, safe, and should be considered in the pediatric population.

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.

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.

Translation and cultural adaptation of the Pediatric Patient-Reported Outcome Measurement Information System-Emotional Distress item banks into Chinese.

To develop the Chinese version of the Pediatric Patient-Reported Outcome Measurement Information System (PROMIS)-Emotional Distress item bank version 2.0-both conceptually equivalent to the original and relevant in the Chinese culture. The Pediatric PROMIS-Emotional Distress item bank was translated, following the standard Functional Assessment of Chronic Illness Therapy (FACIT) translation methodology, by a translation team. Eight children aged 8-17 years from the general population were cognitively interviewed. Most items were well understood by children, and some revisions were made after the cognitive interviewing based on the suggestions of the interviewees. The Chinese version of the Pediatric PROMIS-Emotional Distress-v2.0 item bank was conceptually and semantically equivalent to the original. The Chinese version of the Pediatric PROMIS-Emotional Distress item bank is now available for further studies to develop computer adaptive tests (CATs). Future CAT version measures may become a new standard measure for children in the general population and those living with a chronic condition in China.

Assessment of pediatric asthma exacerbation with the use of new PROMIS measures

Objective Patient reported outcome measures, such as the Patient Reported Outcomes Measurement Information System (PROMIS) may be used to assess patient functioning for asthma and aid in understanding the impact of asthma exacerbation. These domains may be utilized as endpoints in clinical trials and to guide clinical care. The purpose of this study was to determine psychometric properties of the new PROMIS measures for children with asthma, at baseline and with exacerbation. Methods We conducted a cross-sectional analysis of children with acute asthma exacerbation or at baseline health. Psychometric properties of validity (using known groups and correlation) and reliability (using Cronbach’s alpha and IRT) for the new PROMIS measures were determined. Results Our study included 220 subjects, 102 were enrolled during an acute exacerbated state. Cronbach’s alpha and IRT reliability was greater or equal to 0.75. Our subjects experiencing an acute exacerbated state reported worse T-scores for pain related domains: pain behavior 45.7 vs 53.5 (p < 0.001), pain quality sensory 44.4 vs 48.5 (p < 0.005), pain quality affective 42.5 vs 51.3 (p < 0.001), and physical stress experience 60.5 vs 65.4 (p < 0.001); and asthma impact 47.9 vs 61.0 (p < 0.001), than subjects at baseline. Child and parent-proxy agreement ranged from 35% to 56%. Conclusions The new Pediatric PROMIS domains are valid and reliable for use in children with asthma, for both child-reported and parent-proxy reported outcomes. It was determined that children with acute asthma exacerbation have worse patient reported outcomes (PROs) for the new pain related domains and asthma impact.

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.

Experiences of pediatric lymphoma patients undergoing treatment in Malawi across all PROMIS-25 domains.

203 Background: Health-related quality of life (HRQoL) is an important outcome in cancer care and research, but such data from sub-Saharan Africa are scant. We translated and validated the Pediatric Patient-Reported Outcome Measurement Information System (PROMIS)-25 questionnaire for use in Malawi. Methods: We administered the Pediatric PROMIS-25 at baseline, mid-treatment, treatment completion, and follow-up to pediatric lymphoma patients receiving care in Lilongwe. Domain scores were transformed into PROMIS T-scores. Differences in follow-up and baseline values were calculated and compared to published minimally important difference (MID) estimates of 3 points. Results: Eighty-one questionnaires were completed at diagnosis, 41 at mid-treatment, 24 at treatment completion, and 25 at follow-up [Table]. At baseline, 57 (70%) were male, median age was 11 (IQR 9-13), and 50 (62%) reported Pain Intensity ≥8. Mobility, Anxiety, Depressive Symptoms, and Pain Interference improved during treatment, but seemed to worsen at treatment completion. At follow-up, substantial improvements in HRQoL were reported [Table]. Conclusions: Despite poor HRQoL at baseline, improvements in all measured domains exceeded accepted MID thresholds. This suggests treatment led to meaningful improvements in HRQoL, but high mortality in data may reflect a survivor effect. Incorporating serial HRQoL assessments in emerging cancer programs in sub-Saharan Africa should be a regional priority. HRQoL T-scores during care, median (IQR). Lower Mobility and Peer Relationship scores reflect worse functioning; higher symptom scores reflect worse symptom burden. [Table: see text]

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.

Risk and Resilience in Pediatric Pain: The Roles of Parent and Adolescent Catastrophizing and Acceptance.

Both pediatric and parent pain catastrophizing and pain acceptance are key factors associated with pediatric pain outcomes; however, the interactive effects of these factors within the parent-child dyad have yet to be tested. The aims of this study were to examine: (1) the mediating role of child catastrophizing between parent catastrophizing and child outcomes (pain interference and mobility), (2) the mediating role of child acceptance between parent acceptance and child outcomes, and (3) whether child acceptance buffers the relation between parent catastrophizing and child catastrophizing, which in turn impacts child outcomes. Cross-sectional data from 324 youth with chronic pain ages 10 to 17 years (mean age=14.72, [SD=2.12]; 73.1% female; 59% Caucasian) and their parents were collected. Participants completed measures assessing pediatric Patient-Reported Outcome Measurement Information System (PROMIS) domains (mobility and pain interference), pain catastrophizing, pain acceptance, and child pain intensity. Mediation was conducted via 1000-draw bootstrap-adjusted analyses in Mplus. Parent pain catastrophizing was indirectly associated with child pain interference via child catastrophizing but was not associated with mobility difficulties in the mediation model. Parent pain acceptance was indirectly associated with both child pain interference and mobility via child acceptance. We did not find evidence of child acceptance-buffering parent and child pain catastrophizing. The findings of this study highlight the need for caregiver involvement in multidisciplinary treatments to mitigate risk and enhance resilience in youth with chronic pain.

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.

Performance of Pediatric PROMIS CATs in Children With Upper Extremity Fractures.

Background: This study was designed to quantify the performance of the pediatric Patient-Reported Outcome Measurement Information System (PROMIS) when delivered as part of routine care to children with upper extremity (UE) fractures. Methods: This cross-sectional study analyzed 964 new pediatric patients presenting with an UE fracture. All patients completed PROMIS computer adaptive tests for pain interference, peer relationships, UE function, and mobility domains at clinic registration. PROMIS was completed by parent-proxy (n = 418) for 5- to 7-year-olds and self-reported by 8- to 10-year-olds (n = 546). PROMIS score distributions were defined, and Pearson correlations assessed the interrelation between PROMIS domains. Student's t tests compared mean PROMIS scores between parent-proxy and self-completion groups. Results: UE scores indicated the greatest average impairment of all PROMIS domains. However, 13% of patients reached the UE score ceiling indicating maximal UE function. UE scores and mobility scores had a strong positive correlation while UE scores had a moderate negative correlation with pain interference. In all patients, peer relationships were, at most, very weakly correlated with any other PROMIS domain. After grouping by fracture type, parent-proxy completion estimated worse UE function, more pain interference, and worse peer relationship. Conclusions: Pediatric PROMIS UE function scores capture impairment from UE fractures but do have a strong positive correlation with pediatric PROMIS Mobility, which assesses lower extremity function. Among children with UE fractures, parent-proxy completion of pediatric PROMIS appears associated with worse scores on most PROMIS domains.

Leveraging pediatric PROMIS item banks to assess physical functioning in children at risk for severe functional loss

BackgroundPediatric neuromuscular illnesses often result in decreased health-related quality of life (HRQL), notably in physical functioning. Generic HRQL measures have been developed for use in general populations, but may not adequately assess patients with severe functional loss. To address this measurement gap, we created two custom parent-proxy physical functioning short forms for use among children at risk for low levels of functioning, using pediatric Patient Reported Outcomes Measurement Information System (PROMIS) item banks for Upper Extremity and Mobility.MethodsTwo custom short forms from PROMIS Upper Extremity (13 items) and Mobility (13 items) parent-proxy item banks were created and administered to parents of children (ages 5 – 22 years) enrolled in an integrated care program for management of chronic respiratory insufficiency, largely due to neuromuscular illnesses. Standardized PROMIS T-scores have a mean of 50 (SD = 10); higher scores indicate better functioning. Physicians rated clinical severity. Single proxy-rated items on mental and physical health from the Child Health Rating Inventories (CHRIs) global health scale were completed by parents. Psychometric properties, including known groups comparisons, were explored.ResultsFifty-seven parents completed the parent-proxy custom PROMIS short forms. The mean Upper Extremity T-score was 21 (SD = 13); the mean Mobility T-score was 22 (SD = 11). Some participants scored at the measurement floor; two items on assistive devices did not perform well in this sample and were excluded from the Mobility T-score. Known groups comparisons showed that those with lower clinical severity had better median Upper Extremity (22 vs. 14, p < 0.001) and Mobility (28 vs. 16, p = 0.004) function than those with worse clinical severity. Both Upper Extremity and Mobility T-scores were higher in the subgroups defined by better physical and mental health, as measured by the CHRIs.ConclusionsUpper Extremity and Mobility T-scores were nearly three standard deviations below the PROMIS pediatric calibration population mean. Preliminary psychometrics demonstrated the potential to more accurately measure lower physical functioning using items from PROMIS item banks. However, some participants scored at the measurement floor despite targeting items at the lower end of the scale. Further short form refinement, enrichment of the item banks, and larger-scale field testing are needed.

The emotional distress of children with cancer in China: an item response analysis of C-Ped-PROMIS Anxiety and Depression short forms.

The pediatric patient-reported outcomes measurement information system (PROMIS) was developed to provide self-reported item banks and short forms for children and adolescents (aged 8-17 years) experiencing a chronic illness to assess their quality of life and symptoms. The pediatric PROMIS short forms have been translated into Chinese and applied in children with cancer in China. This study aimed to describe psychometric properties of the Anxiety and Depression measures. A total of 232 children and adolescents with cancer were recruited in hospital-based inpatient and outpatient clinics. Eight Chinese versions of pediatric PROMIS (C-Ped-PROMIS) measures were administered. Categorical confirmatory factor analysis (CCFA) were conducted to evaluate scale dimensionality and item local dependence of the C-Ped-PROMIS Anxiety and Depression items. Multiple indicator multiple cause models were used to analyze differential item functioning (DIF), item response theory parameters were calculated, and test information against T scores was reported for each measure. The results of the CCFA confirmed that both C-Ped-PROMIS Anxiety and Depression scales appropriately measure the theoretical constructs as designed. No significant DIF was found for the items of the two scales according to age and gender. Both scales have high test reliability as long as their T scores are not on the low or high extremes. The pediatric PROMIS Anxiety and Depression measures were developed to provide efficient and flexible assessment of emotional distress domains. Our results provide evidence that the two C-Ped-PROMIS measures can be readily applied to measure anxious and depressive symptoms in Chinese children with cancer.

Patterns of symptoms and functional impairments in children with cancer

Children with cancer experience multiple symptoms due to their disease and as a result of treatment. The purpose of this study was to demonstrate the feasibility and potential utility of using latent profile analysis (LPA), a type of cluster analysis, in children with cancer to identify groups of patients who experience similar levels of symptom severity and impairment of physical function. We analyzed patient-reported symptom and functional data previously collected using the Pediatric Patient Reported Outcomes Measurement Information System (PROMIS). LPA was used to identify and characterize groups of patients who reported similar levels of symptom severity and functional impairment. We then used the multinomial logit model to examine demographic and disease characteristics associated with symptom/function profile membership. The analysis included 200 patients in treatment or in survivorship. We identified four symptom/function profiles; children currently receiving cancer treatment and those with at least one other medical problem were more likely to be members of the profile with the highest levels of symptom severity and functional impairment. Gender, age, race/ethnicity, and tumor type were not associated with profile membership. LPA is a cluster research methodology that provides clinically useful results in pediatric oncology patients. Future studies of children with cancer using LPA could potentially lead to development of clinical scoring systems that predict patients' risk of developing more severe symptoms and functional impairments, allowing clinicians, patients, and parents to better anticipate and prevent the multiple symptoms that occur during and after treatment for childhood cancer.

Translation and Linguistic Validation of the Pediatric Patient-Reported Outcomes Measurement Information System Measures Into Simplified Chinese Using Cognitive Interviewing Methodology

The Pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) measures were developed using modern measurement theory and tested in a variety of settings to assess the quality of life, function, and symptoms of children and adolescents experiencing a chronic illness and its treatment. Developed in English, this set of measures had not been translated into Chinese. The objective of this study was to develop the Chinese version of the Pediatric PROMIS measures (C-Ped-PROMIS), specifically 8 short forms, and to pretest the translated measures in children and adolescents through cognitive interviewing methodology. The C-Ped-PROMIS was developed following the standard Functional Assessment of Chronic Illness Therapy Translation Methodology. Bilingual teams from the United States and China reviewed the translation to develop a provisional version, which was then pretested with cognitive interview by probing 10 native Chinese-speaking children aged 8 to 17 years in China. The translation was finalized by the bilingual teams. Most items, response options, and instructions were well understood by the children, and some revisions were made to address patient's comments during the cognitive interview. The results indicated that the C-Ped-PROMIS items were semantically and conceptually equivalent to the original. Children aged 8 to 17 years in China were able to comprehend these measures and express their experience and feelings about illness or their life. The C-Ped-PROMIS is available for psychometric validation. Future work will be directed at translating the rest of the item banks, calibrating them and creating a Chinese final version of the short forms.