Development of a parents' short form survey of their children's oral health.

BackgroundParents play an important role in their children's oral health behaviors, provide oral health access, initiate prevention, and coping strategies for health care.AimThis paper develops a short form (SF) to assist parents to evaluate their children's oral health status using Patient-Reported Outcome Measurement Information System (PROMIS) framework that conceptualized health as physical, mental, and social components.DesignSurveys of parents were conducted at dental clinics in Los Angeles County, together with an on-site clinical examination by dentists to determine clinical outcomes, Children's Oral Health Status Index (COHSI), and referral recommendations (RRs). Graded response models in item response theory were used to create the SF. A toolkit including SF, demographic information, and algorithms was developed to predict the COHSI and RRs.ResultsThe final SF questionnaire consists of eight items. The square root mean squared error for the prediction of COHSI is 7.6. The sensitivity and specificity of using SF to predict immediate treatment needs (binary RRs) are 85% and 31%.ConclusionsThe parent SF is an additional component of the oral health evaluation toolkit that can be used for oral health screening, surveillance program, policy planning, and research of school-aged children and adolescents from guardian perspectives

Immersive Virtual Reality for the Management of Pain in Community-Dwelling Older Adults.

Immersive virtual reality (VR) can provide a high level of engagement and distraction analgesia to address pain. However, community-based applications of this technology for older adults have not been studied. The objective of this study was to examine the applicability and effectiveness of an immersive VR intervention for pain, depression, and quality of life (QOL) in older adults. This pretest–posttest, mixed-methods design included senior center members (n = 12) with pain that interfered with daily functioning. The outcomes included the Numeric Pain Rating Scale, Patient-Reported Outcomes Measurement Information System (PROMIS®) depression scale, World Health Organization Quality of Life Scale Brief Version (WHO QOL-BREF), and open-ended questions. The VR intervention (15- to 45-min sessions, 12 sessions over 6 weeks) was well accepted with no dropouts. There was a significant decrease in pain (p =.002, d = −1.54) with no effect on depression and QOL. There were no adverse effects, and positive perceptions of VR were reported. The 6-week immersive VR intervention was applicable and effective in reducing pain intensity for community-dwelling older adults

Acupressure to Reduce Treatment-Related Symptoms for Children With Cancer and Recipients of Hematopoietic Stem Cell Transplant: Protocol for a Randomized Controlled Trial.

BackgroundWe describe the study design and protocol of a pragmatic randomized controlled trial (RCT) Acupressure for Children in Treatment for a Childhood Cancer (ACT-CC).ObjectiveTo describe the feasibility and effectiveness of an acupressure intervention to decrease treatment-related symptoms in children in treatment for cancer or recipients of a chemotherapy-based hematopoietic stem cell transplant (HSCT).DesignTwo-armed RCTs with enrollment of 5 to 30 study days.SettingTwo pediatric teaching hospitals.PatientsEighty-five children receiving cancer treatment or a chemotherapy-based HSCT each with 1 parent or caregiver.InterventionPatients are randomized 1:1 to receive either usual care plus daily professional acupressure and caregiver delivered acupressure versus usual care alone for symptom management. Participants receive up to 20 professional treatments.Main outcomeA composite nausea/vomiting measure for the child.Secondary outcomesChild's nausea, vomiting, pain, fatigue, depression, anxiety, and positive affect.Parent outcomesDepression, anxiety, posttraumatic stress symptoms, caregiver self-efficacy, and positive affect. Feasibility of delivering the semistandardized intervention will be described. Linear mixed models will be used to compare outcomes between arms in children and parents, allowing for variability in diagnosis, treatment, and age.DiscussionTrial results could help childhood cancer and HSCT treatment centers decide about the regular inclusion of trained acupressure providers to support symptom management

Protocol for a randomized controlled trial examining multilevel prediction of response to behavioral activation and exposure-based therapy for generalized anxiety disorder.

BACKGROUND:Only 40-60% of patients with generalized anxiety disorder experience long-lasting improvement with gold standard psychosocial interventions. Identifying neurobehavioral factors that predict treatment success might provide specific targets for more individualized interventions, fostering more optimal outcomes and bringing us closer to the goal of "personalized medicine." Research suggests that reward and threat processing (approach/avoidance behavior) and cognitive control may be important for understanding anxiety and comorbid depressive disorders and may have relevance to treatment outcomes. This study was designed to determine whether approach-avoidance behaviors and associated neural responses moderate treatment response to exposure-based versus behavioral activation therapy for generalized anxiety disorder. METHODS/DESIGN:We are conducting a randomized controlled trial involving two 10-week group-based interventions: exposure-based therapy or behavioral activation therapy. These interventions focus on specific and unique aspects of threat and reward processing, respectively. Prior to and after treatment, participants are interviewed and undergo behavioral, biomarker, and neuroimaging assessments, with a focus on approach and avoidance processing and decision-making. Primary analyses will use mixed models to examine whether hypothesized approach, avoidance, and conflict arbitration behaviors and associated neural responses at baseline moderate symptom change with treatment, as assessed using the Generalized Anxiety Disorder-7 item scale. Exploratory analyses will examine additional potential treatment moderators and use data reduction and machine learning methods. DISCUSSION:This protocol provides a framework for how studies may be designed to move the field toward neuroscience-informed and personalized psychosocial treatments. The results of this trial will have implications for approach-avoidance processing in generalized anxiety disorder, relationships between levels of analysis (i.e., behavioral, neural), and predictors of behavioral therapy outcome. TRIAL REGISTRATION:The study was retrospectively registered within 21 days of first participant enrollment in accordance with FDAAA 801 with ClinicalTrials.gov, NCT02807480. Registered on June 21, 2016, before results

Promising insights into the health related quality of life for children with severe obesity

Background Childhood obesity is a growing health concern known to adversely affect quality of life in children and adolescents. The Patient Reported Outcomes Measurement Information System (PROMIS) pediatric measures were developed to capture child self-reports across a variety of health conditions experienced by children and adolescents. The purpose of this study is to begin the process of validation of the PROMIS pediatric measures in children and adolescents affected by obesity. Methods The pediatric PROMIS instruments were administered to 138 children and adolescents in a cross-sectional study of patient reported outcomes in children aged 8–17 years with age-adjusted body mass index (BMI) greater than the 85th percentile in a design to establish known-group validity. The children completed the depressive symptoms, anxiety, anger, peer relationships, pain interference, fatigue, upper extremity, and mobility PROMIS domains utilizing a computer interface. PROMIS domains and individual items were administered in random order and included a total of 95 items. Patient responses were compared between patients with BMI 85 to < 99th percentile versus ≥ 99th percentile. Results 136 participants were recruited and had all necessary clinical data for analysis. Of the 136 participants, 5% ended the survey early resulting in missing domain scores at the end of survey administration. In multivariate analysis, patients with BMI ≥ 99th percentile had worse scores for depressive symptoms, anger, fatigue, and mobility (p < 0.05). Parent-reported exercise was associated with better scores for depressive symptoms, anxiety, and fatigue (p < 0.05). Conclusions Children and adolescents ranging from overweight to severely obese can complete multiple PROMIS pediatric measures using a computer interface in the outpatient setting. In the 5% with missing domain scores, the missing scores were consistently found in the domains administered last, suggesting the length of the assessment is important. The differences in domain scores found in this study are consistent with previous reports investigating the quality of life in children and adolescents with obesity. We show that the PROMIS instrument represents a feasible and potentially valuable instrument for the future study of the effect of pediatric obesity on quality of life

Behavior change interventions: the potential of ontologies for advancing science and practice

A central goal of behavioral medicine is the creation of evidence-based interventions for promoting behavior change. Scientific knowledge about behavior change could be more effectively accumulated using "ontologies." In information science, an ontology is a systematic method for articulating a "controlled vocabulary" of agreed-upon terms and their inter-relationships. It involves three core elements: (1) a controlled vocabulary specifying and defining existing classes; (2) specification of the inter-relationships between classes; and (3) codification in a computer-readable format to enable knowledge generation, organization, reuse, integration, and analysis. This paper introduces ontologies, provides a review of current efforts to create ontologies related to behavior change interventions and suggests future work. This paper was written by behavioral medicine and information science experts and was developed in partnership between the Society of Behavioral Medicine's Technology Special Interest Group (SIG) and the Theories and Techniques of Behavior Change Interventions SIG. In recent years significant progress has been made in the foundational work needed to develop ontologies of behavior change. Ontologies of behavior change could facilitate a transformation of behavioral science from a field in which data from different experiments are siloed into one in which data across experiments could be compared and/or integrated. This could facilitate new approaches to hypothesis generation and knowledge discovery in behavioral science

Measures of Hip Function and Symptoms

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/163446/2/acr24231_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/163446/1/acr24231.pd

SLEEP AND HEALTH-RELATED QUALITY OF LIFE AMONG PERSONS WITH PARKINSON’S DISEASE AND THEIR CAREGIVERSSLEEP AND HEALTH-RELATED QUALITY OF LIFE AMONG PERSONS WITH PARKINSON’S DISEASE AND THEIR CAREGIVERS

This dissertation aimed at filling gaps in the body of Parkinson’s disease (PD) and sleep literature by synthesizing and appraising current knowledge on the influence of sleep on health-related quality of life (HRQoL) in persons with Parkinson’s (PWP) and their caregivers, conducting a psychometric evaluation of a HRQoL instrument among PWP, and applying a novel method to assess the dyadic relationship between sleep and HRQoL in PWP and their caregivers. First, the systematic literature review results showed that nocturnal and diurnal sleep problems among PWP are strong predictors of their HRQoL. Additionally, studies that focused on caregiver outcomes showed that PWP and caregivers’ sleep issues were predictors of caregiver HRQoL. Results synthesized across these studies suggest that the relationship between sleep and HRQoL might be interdependent for PWP and caregivers. Second, a cross-sectional study was conducted to evaluate the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health, a generic HRQoL instrument, among PWP. Findings from this study provide evidence that the global physical health (GPH) and global mental health (GMH) summary scores obtained from this instrument show good reliability and validity in PWP. Finally, a cross-sectional study was conducted to assess the dyadic relationship between sleep and HRQoL among PWP and caregivers using the Actor-Partner Interdependence Model. This study used the PROMIS sleep disturbance (SD) and the PROMIS sleep-related impairment (SRI) to measure nocturnal and diurnal sleep issues, respectively. Results showed that both SD and SRI in PWP and their caregivers are significant predictors of their own HRQoL. Additionally, caregiver’s SD and SRI were found to be significant predictors of PWP’s HRQoL. These results provide empirical evidence that the sleep-HRQoL relationship is not an independently occurring phenomenon for PWP and caregivers. Study findings about the impact of sleep on HRQoL among PWP and their caregivers help provide a better understanding of this complex relationship in PD. Interventions aiming to improve PWP’s HRQoL might benefit from integrating services that also address caregivers’ sleep. Such interventions have the potential to reduce humanistic burden in this population and economic burden on the society by way of decreasing institutionalization rates among PWP

Advancements in Standardising Patient-Reported Outcomes Measurement

Patient-reported outcomes (PRO) data can deliver crucial information for diagnostic purposes and regarding benefits and possible harms of medical interventions. Recognising the potential of the patient’s voice, PRO data are increasingly integrated in clinical practice and clinical research, and they play an increasingly important role in medical and health policy decision making. With the growing focus on patient centeredness, the requirements towards the quality of PRO data are steadily increasing as well, and outcomes researchers and other stakeholders working in related disciplines such as academia, the pharmaceutical industry and the not-for-profit sector have a growing ethical responsibility to use only those PRO instruments that generate robust data and allow for valid inferences from PRO scores. To achieve high quality PRO data, standardised processes spanning from PRO instrument development and content validation, translation and cultural adaptation, statistical analysis and interpretation of PRO data are key to ensure that data collected via patient self-report can be trusted. This habilitation thesis focuses on PRO standardisation efforts worldwide, including an overview of PRO projects that were run in the context of two key PRO measurement systems, i.e., the PRO instruments of 1) the Patient-Reported Outcomes Measurement Information System (PROMIS) initiative and 2) the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group. In conclusion, international initiatives aimed at standardised PRO assessment are well underway all of which contribute to ensuring that high quality PRO data can be generated. It is expected that both the PROMIS and EORTC suites of PRO instruments will continue to grow, consolidate the PRO field and be a benchmark for standardised PRO assessment, validation and interpretation

A Direct Comparison of the Measurement Properties of EQ-5D-5L, PROMIS-29+2 and PROMIS Global Health Instruments and EQ-5D-5L and PROPr Utilities in a General Population Sample

Objectives: We aimed to compare measurement properties of the 5-level version of EQ-5D (EQ-5D-5L) and 2 Patient-Reported Outcomes Measurement Information System (PROMIS) short forms, PROMIS-29+2 and PROMIS Global Health (PROMIS-GH-10), and of EQ-5D-5L and PROMIS-preference scoring system (PROPr) utilities. Methods: A cross-sectional survey was conducted in a general population sample in Hungary (N = 1631). We compared the following measurement properties at the level of items, domains, and utilities, the latter using corresponding US value sets: ceiling and floor, informativity (Shannon's indices), agreement, convergent, and known-group validity. For the analyses, PROMIS items/domains were matched to EQ-5D-5L domains that cover similar concepts of health. Results: The majority of PROMIS items showed enhanced distributional characteristics, including lower ceilings and higher informativity than the EQ-5D-5L. Good convergent validity was established between EQ-5D-5L and PROMIS domains capturing similar aspects of health. Mean EQ-5D-5L utilities were substantially higher than those of PROPr (0.864 vs 0.535). EQ-5D-5L utilities correlated moderately or strongly with PROPr (r = 0.61), PROMIS-GH-10 physical (r = 0.68), and mental health summary scores (r = 0.53). EQ-5D-5L utilities decreased with age, whereas PROPr utilities slightly increased with age. EQ-5D-5L utilities discriminated significantly better in 12/28 (ratio of F-statistics) and 18/26 (area under the receiver-operating characteristics curve ratio) known groups defined by age, self-perceived health status, and self-reported physician-diagnosed health conditions, including hypertension, diabetes, coronary heart disease, chronic kidney disease, and stroke. Conclusions: This study provides comparative evidence on the measurement properties of EQ-5D-5L, PROMIS-29+2, and PROMIS-GH-10 and informs decisions about the choice of instruments in population health surveys for assessment of patients’ health and for cost-utility analyses.</p