scholarly journals QOL-31. USE OF PATIENT-REPORTED OUTCOMES TO IDENTIFY YOUTH AT RISK FOR IMPAIRED OVERALL HEALTH

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii437-iii437
Author(s):  
Lisa Ingerski ◽  
Rebecca Williamson Lewis ◽  
Ann Mertens ◽  
Tobey MacDonald
Keyword(s):  
At Risk ◽  
Brain Tumor ◽  
Global Health ◽  
Patient Reported Outcomes ◽  
Pediatric Brain Tumor ◽  
Measurement Information ◽  
T Score ◽  
Modifiable Factors ◽  
Patient Reported ◽  
Pediatric Brain

Abstract Pediatric brain tumor survivors often experience persistent and clinically significant late-effects following treatment. Critical to understanding morbidity is utilization of patient-reported outcomes (PROs). The current study evaluated PROs of individuals previously diagnosed with a pediatric brain tumor and identified risk factors for less optimal overall health. Participants included 127 youth 10.59±4.81 (M±SD) years old at survey completion and 4.45±3.82 years from diagnosis of a brain tumor (34.6% Pilocytic Astrocytoma, 9.4% Medulloblastoma, 9.4% Ependymoma, 7.9% Craniopharyngioma, 38.6% Other). Outcomes were assessed via Patient-Reported Outcomes Measurement Information System (PROMIS) parent-proxy measures. Overall health was assessed via PROMIS Global Health (i.e., a measure of general, physical, mental, and social health). Univariate and logistic regression analyses examined potential demographic, medical, and psychosocial factors (e.g., age, race, diagnosis, treatment) related to poor global health. Initial descriptive analyses suggested that most youth experienced anxiety symptoms (T-score M±SD=50.71±11.54), depressive symptoms (47.96±10.34), cognitive functioning (46.52±9.10), and fatigue (55.14±10.62) similar to their peers. However, 31.0% of youth experienced impaired global health (T-score<40). After adjusting for other potential covariates, the final model suggested that youth with significant anxiety (OR=6.20, CI=1.56–24.65), youth with significant fatigue (OR=3.96, CI=1.26–12.41), and youth who did not undergo a gross total resection (OR=0.25, CI=0.07–0.96) were at risk for impaired global health. Identifying those at-risk for impaired health is essential to reducing survivor morbidity and optimizing overall quality of life following treatment. Current data suggest potentially modifiable factors that may improve long-term outcomes for survivors of pediatric brain tumors.

scholarly journals Establishing a common metric for patient-reported outcomes in cancer patients: linking patient reported outcomes measurement information system (PROMIS), numerical rating scale, and patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE)

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Minji K. Lee ◽  
Benjamin D. Schalet ◽  
David Cella ◽  
Kathleen J. Yost ◽  
Amy C. Dueck ◽  
...  
Keyword(s):  
Information System ◽  
Adverse Events ◽  
Patient Reported Outcomes ◽  
Rating Scale ◽  
Measurement Information ◽  
Outcomes Measurement ◽  
T Score ◽  
Patient Reported ◽  
Measurement Information System ◽  
The Common

Abstract Background Researchers and clinicians studying symptoms experienced by people with cancer must choose from various scales. It would be useful to know how the scores on one measure translate to another. Methods Using item response theory (IRT) with the single-group design, in which the same sample answers all measures, we produced crosswalk tables linking five 0–10 numeric rating scale (NRS) and 15 items from Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE, scored on a 1–5 scale) to the T-Score metric of six different scales from the NIH Patient reported Outcomes Measurement Information System (PROMIS®). The constructs, for which we conducted linking, include emotional distress-anxiety, emotional distress-depression, fatigue, sleep disturbance, pain intensity, and pain interference. We tested the IRT linking assumption of construct similarity between measures by comparing item content and testing unidimensionality of item sets comprising each construct. We also investigated the correlation of the measures to be linked and, by inspecting standardized mean differences, whether the linkage is invariant across age and gender subgroups. For measures that satisfied the assumptions, we conducted linking. Results In general, an NRS score of 0 corresponded to about 38.2 on the PROMIS T-Score scale (mean = 50; SD = 10); whereas an NRS score of 10 corresponded to a PROMIS T-Score of approximately 72.7. Similarly, the lowest/best score of 1 on PRO-CTCAE corresponded to 39.8 on T-score scale and the highest/worst score of 5 corresponded to 72.0. Conclusion We produced robust linking between single item symptom measures and PROMIS short forms.

scholarly journals The PROMIS Global Health Questionnaire Correlates With the QuickDASH in Patients With Upper Extremity Illness

Hand ◽  
2017 ◽  
Vol 13 (1) ◽  
pp. 118-121 ◽  
Author(s):  
Nicky Stoop ◽  
Mariano E. Menendez ◽  
Jos J. Mellema ◽  
David Ring
Keyword(s):  
Mental Health ◽  
Global Health ◽  
Upper Extremity ◽  
Patient Reported Outcomes ◽  
Global Mental Health ◽  
Pearson Correlation ◽  
Measurement Information ◽  
Consistent Finding ◽  
Patient Reported ◽  
Mental Health Subscale

Background: The objective of this study is to evaluate the construct validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health instrument by establishing its correlation to the Quick-Disabilities of the Arm, Shoulder and Hand (QuickDASH) questionnaire in patients with upper extremity illness. Methods: A cohort of 112 patients completed a sociodemographic survey and the PROMIS Global Health and QuickDASH questionnaires. Pearson correlation coefficients were used to evaluate the association of the QuickDASH with the PROMIS Global Health items and subscales. Results: Six of the 10 PROMIS Global Health items were associated with the QuickDASH. The PROMIS Global Physical Health subscale showed moderate correlation with QuickDASH and the Mental Health subscale. There was no significant relationship between the PROMIS Global Mental Health subscale and QuickDASH. Conclusions: The consistent finding that general patient-reported outcomes correlate moderately with regional patient-reported outcomes suggests that a small number of relatively nonspecific patient-reported outcome measures might be used to assess a variety of illnesses. In our opinion, the blending of physical and mental health questions in the PROMIS Global Health makes this instrument less useful for research or patient care.

scholarly journals Can Patient Reported Outcomes Guide Therapy Needs in Foot and Ankle Patients?

2018 ◽  
Vol 3 (3) ◽  
pp. 2473011418S0025
Author(s):  
Jeff Houck ◽  
Jillian Santer ◽  
Judith Baumhauer
Keyword(s):  
Physical Function ◽  
Patient Reported Outcomes ◽  
Predictive Ability ◽  
Pain Interference ◽  
Measurement Information ◽  
Foot And Ankle ◽  
Data Set ◽  
T Score ◽  
Patient Reported ◽  
Health Domains

Category: Other Introduction/Purpose: The patient acceptable symptom state (PASS) is a validated question establishing if patients activity and symptoms are at a satisfactory low level for pain and function. Surprisingly, ~20% of foot and ankle patients at their initial visit present for care with an acceptable symptom state (i.e. PASS yes). These patients are important to identify to prevent over treatment and avoid excessive cost. It is also unclear what health domains (Pain Interference (PI), Physical Function (PF), or Depression (Dep)) influence a patients judgement of their PASS state (i.e. why they are seeking treatment). The purpose of this analysis is to document the prevalance of PASS state and determine the health domains that discriminate PASS patients and predict PASS state at the initiation of rehabilitation. Methods: Patient reported outcomes measurement information system (PROMIS) computer adaptive test (CAT) scales PF, pain PIand Dep and PASS ratings starting in summer 2017 were routinely collected for patient care. Of 746 unique patients in this data set, 114 patients had ICD-10 codes that were specific to the foot and ankle. Average age was 51years (±18) and 54.4% were female. Patients were seen an average of 19.8(±15.9) days from their referral and were billed as low (51.7%), moderate (44.7%) and high complexity (2.7%) evaluations per current procedural code (CPT) visits. ANOVA models were used to evaluate differences in PROMIS scales by PASS state (Yes/No). The area under receiver operator curve (AUC) was used to determine the predictive ability of each PROMIS scale to determine a PASS state. Thresholds for near 95% specificity were also calculated for a PASS Yes state for each PROMIS scale. Results: The prevalance of PASS Yes patients was 13.2% (15/114). Pass Yes patients were significantly better by an average of 7.2 to 8.0 points across all PROMIS health domains compared to PASS No patients (Table 1). ROC analysis suggested that Dep (AUC=0.73(0.07) p=0.005) was the highest predictor of PASS status followed by PI (AUC=0.70(0.08) p=0.012) and PF (AUC=0.69(0.07) p=0.18). The threshold PROMIS t-score values for determining PASS Yes with nearest 95% specificity were PF = 51.9, PI = 50.6, and Dep = 34. Conclusion: Surprising, yet consistent with previous data, 13.2% of patients at their initial physical therapy consultation rated themselves at an acceptable level of activity and symptoms. Health domains of physical function, pain interference, and depression were better in these patients and showed moderate ability (AUC~0.7) to identify these patients. The PROMIS thresholds suggest patients are identified by pain and physical function equal to the average of the US population (PROMIS T-Score ~50) and extremely low depression scores (34). Clinically it is important to recognize these patients and purposefully provide treatments that reinforce their self efficacy and prevent unnecessary costly treatments.

scholarly journals Effects of Sleep Disturbance on Neuropsychological Functioning in Patients with Pediatric Brain Tumor

2021 ◽  
Author(s):  
Jenna A. Chiang ◽  
Paulina T. Feghali ◽  
Anita Saavedra ◽  
Ashley M. Whitaker
Keyword(s):  
Brain Tumor ◽  
Executive Functioning ◽  
Sleep Duration ◽  
Pediatric Brain Tumor ◽  
Nocturnal Sleep ◽  
Subjective Sleep ◽  
Increased Risk ◽  
Patient Reported ◽  
The Impact ◽  
Pediatric Brain

Abstract Purpose While the effects of sleep on cognition in typically developing children are well established, there is a paucity of research in patients with pediatric brain tumor (PBT), despite their increased risk for sleep-related disturbances. The aim of this study was to examine the impact of sleep factors on patient-reported outcome (PRO) measures, including adaptive and executive functioning within this population.Methods 133 patients with PBT (52% male) ages 5-23 (x̄ = 12.8yrs; SD = 4.5yrs) underwent neuropsychological evaluation, including assessment of adaptive and executive functioning. Subjective sleep concerns, nocturnal sleep duration, and daytime sleep behavior were also collected and compared to age-based guidelines.Results Nearly 30% of patients reported subjective sleep concerns, while the sample as a whole presented with reduced nocturnal sleep duration (approximately one hour below age-based recommendations). Despite the expectation for monophasic sleep by age five, nearly half of the sample reported consistent daytime napping. With regard to functional outcomes, inadequate sleep predicted decreased adaptive functioning, F(1, 56) = 4.23, p < .05 (R2 = .07), as well as increased symptoms of executive dysfunction, F(1, 108) = 3.51, p < .05 (R2 = .03).Conclusion Patients with PBT demonstrate several aspects of abnormal sleep, which are associated with poorer long-term PROs. Further exploration of diagnostic, treatment-related, and demographic variables will be needed to better understand these relationships among patients with PBT in order to inform appropriate interventions.

scholarly journals Cognitive Predictors of Social Adjustment in Pediatric Brain Tumor Survivors Treated with Photon versus Proton Radiation Therapy

2021 ◽  
Author(s):  
Emily Warren ◽  
Kimberly Raghubar ◽  
Paul Cirino ◽  
Amanda Child ◽  
David Grosshans ◽  
...  
Keyword(s):  
At Risk ◽  
Brain Tumor ◽  
Social Skills ◽  
Social Functioning ◽  
Peer Relations ◽  
Verbal Memory ◽  
Pediatric Brain Tumor ◽  
Social Outcomes ◽  
Tumor Diameter ◽  
Pediatric Brain

Background: Pediatric brain tumor survivors are at risk for poor social outcomes. It remains unknown whether cognitive sparing with proton radiotherapy (PRT) supports better social outcomes relative to photon radiotherapy (XRT). We hypothesized that survivors treated with PRT would outperform those treated with XRT on measures of cognitive and social outcomes. Further, we hypothesized that cognitive performance would predict survivor social outcomes. Procedure: Survivors who underwent PRT (n=38) or XRT (n=20) participated in a neurocognitive evaluation >1 year post-radiotherapy. Group differences in cognitive and social functioning were assessed using ANCOVA. Regression analyses examined predictors of peer relations and social skills. Results: Age at evaluation, radiation dose, tumor diameter, and sex did not differ between groups (all p>0.05). However, XRT participants were younger at diagnosis (XRT M=5.0 years, PRT M=7.6 years) and further out from radiotherapy (XRT M=8.7 years, PRT M=4.6 years). The XRT group performed worse than the PRT group on measures of processing speed (p=0.01) and verbal memory (p<0.01); however, social outcomes did not differ by radiation type. The proportion of survivors with impairment in peer relations and social skills exceeded expectation (2(1)=38.67, p<0.001; 2(1)=5.63, p<0.05), and verbal memory approached significance as a unique predictor of peer relations (t=-2.01, p=0.05). Total tumor RT dose significantly predicted social skills (t=-2.23, p<0.05). Conclusions: Regardless of radiation modality, survivors are at risk for social challenges, with one-quarter being socially excluded or undervalued. Deficits in verbal memory may place survivors at particular risk. Results support monitoring of cognitive and social functioning throughout survivorship.

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