Implementing an application programming interface for PROMIS measures at three medical centers

BACKGROUND: There is an increasing body of literature advocating for the collection of patient-reported outcomes (PROs) in clinical care. Unfortunately, there are many barriers to integrating PRO measures, particularly computer adaptive tests (CATs), within electronic health records (EHRs), thereby limiting access to advances in PRO measures in clinical care settings. OBJECTIVE: To address this obstacle, we created and evaluated a software integration of an Application Programming Interface (API) service for administering and scoring Patient-Reported Outcomes Measurement Information System (PROMIS) measures with the EHR system. METHODS: We created a RESTful API and evaluated the technical feasibility and impact on clinical workflow at three academic medical centers. RESULTS: Collaborative teams (i.e., clinical, information technology [IT] and administrative staff) performed these integration efforts addressing issues such as software integration as well as impact on clinical workflow. All centers considered their implementation successful based on the high rate of completed PROMIS assessments (between January 2016 and January 2021) and minimal workflow disruptions. CONCLUSION: These case studies demonstrate not only the feasibility but also the pathway for the integration of PROMIS CATs into the EHR and routine clinical care. All sites utilized diverse teams with support and commitment from institutional leadership, initial implementation in a single clinic, a process for monitoring and optimization, and use of custom software to minimize staff burden and error

Patient-reported outcomes in performance measurement

Patient-reported outcomes (PROs) are measures of how patients feel or what they are able to do in the context of their health status; PROs are reports, usually on questionnaires, about a patient's health conditions, health behaviors, or experiences with health care that individuals report directly, without modification of responses by clinicians or others; thus, they directly reflect the voice of the patient. PROs cover domains such as physical health, mental and emotional health, functioning, symptoms and symptom burden, and health behaviors. They are relevant for many activities: helping patients and their clinicians make informed decisions about health care, monitoring the progress of care, setting policies for coverage and reimbursement of health services, improving the quality of health care services, and tracking or reporting on the performance of health care delivery organizations. We address the major methodological issues related to choosing, administering, and using PROs for these purposes, particularly in clinical practice settings. We include a framework for best practices in selecting PROs, focusing on choosing appropriate methods and modes for administering PRO measures to accommodate patients with diverse linguistic, cultural, educational, and functional skills, understanding measures developed through both classic and modern test theory, and addressing complex issues relating to scoring and analyzing PRO data.Publishe

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

Background: Pediatric 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. Methods: Two 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. Results: Fifty-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. Conclusions: Upper 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

Patient-reported outcomes in performance measurement

Patient-reported outcomes (PROs) are measures of how patients feel or what they are able to do in the context of their health status; PROs are reports, usually on questionnaires, about a patient's health conditions, health behaviors, or experiences with health care that individuals report directly, without modification of responses by clinicians or others; thus, they directly reflect the voice of the patient. PROs cover domains such as physical health, mental and emotional health, functioning, symptoms and symptom burden, and health behaviors. They are relevant for many activities: helping patients and their clinicians make informed decisions about health care, monitoring the progress of care, setting policies for coverage and reimbursement of health services, improving the quality of health care services, and tracking or reporting on the performance of health care delivery organizations. We address the major methodological issues related to choosing, administering, and using PROs for these purposes, particularly in clinical practice settings. We include a framework for best practices in selecting PROs, focusing on choosing appropriate methods and modes for administering PRO measures to accommodate patients with diverse linguistic, cultural, educational, and functional skills, understanding measures developed through both classic and modern test theory, and addressing complex issues relating to scoring and analyzing PRO data

Diamantes do médio rio Jequitinhonha, Minas Gerais: qualificação gemológica e análise granulométrica

BackgroundGlobal health measures represent an attractive option for researchers and clinicians seeking a brief snapshot of a patient's overall perspective on his or her health. Because scores on different global health measures are not comparable, comparative effectiveness research (CER) is challenging.ObjectiveTo establish a common reporting metric so that the physical and mental health scores on the Veterans RAND 12-Item Health Survey (VR-12 (©) ) can be converted into scores on the corresponding Patient Reported Outcomes Measurement Information System (PROMIS(®)) Global Health scores.DesignFollowing a single-sample linking design, participants from an Internet panel completed items from the PROMIS Global Health and VR-12 Health Survey. A common metric was created using analyses based on item response theory (IRT), producing score cross-walk tables for the mental and physical health components of each measure. The linking relationships were evaluated by calculating the standard deviation of differences between the observed and linked PROMIS scores and estimating confidence intervals by sample size.ParticipantsParticipants (N = 2025) were 49 % male and 73 % white; mean age was 46 years.Main measuresMental and physical health subscales of the PROMIS Global Health and the VR-12. The mean VR-12 physical component and mental component scores were 45.2 and 46.6, respectively; the mean PROMIS physical and mental health scores were 48.3 and 48.5, respectively.Key resultsWe found evidence that the combined set of VR-12 and PROMIS items were relatively unidimensional and that we could proceed with linking. Linking worked better between the physical health than mental health scores using VR-12 item responses (vs. linking based on algorithmic scores). For each of the cross-walks, users can minimize the impact of linking error with modest increases in sample sizes.ConclusionsVR-12 scores can be expressed on the PROMIS Global Health metric to facilitate the evaluation of treatment, including CER. Extending these results to other common measures of global health is encouraged

The challenge of measuring intra-individual change in fatigue during cancer treatment

Evaluate how well three different patient-reported outcomes (PROs) measure individual change

Linking Physical and Mental Health Summary Scores from the Veterans RAND 12-Item Health Survey (VR-12) to the PROMIS(®) Global Health Scale.

BackgroundGlobal health measures represent an attractive option for researchers and clinicians seeking a brief snapshot of a patient's overall perspective on his or her health. Because scores on different global health measures are not comparable, comparative effectiveness research (CER) is challenging.ObjectiveTo establish a common reporting metric so that the physical and mental health scores on the Veterans RAND 12-Item Health Survey (VR-12 (©) ) can be converted into scores on the corresponding Patient Reported Outcomes Measurement Information System (PROMIS(®)) Global Health scores.DesignFollowing a single-sample linking design, participants from an Internet panel completed items from the PROMIS Global Health and VR-12 Health Survey. A common metric was created using analyses based on item response theory (IRT), producing score cross-walk tables for the mental and physical health components of each measure. The linking relationships were evaluated by calculating the standard deviation of differences between the observed and linked PROMIS scores and estimating confidence intervals by sample size.ParticipantsParticipants (N = 2025) were 49 % male and 73 % white; mean age was 46 years.Main measuresMental and physical health subscales of the PROMIS Global Health and the VR-12. The mean VR-12 physical component and mental component scores were 45.2 and 46.6, respectively; the mean PROMIS physical and mental health scores were 48.3 and 48.5, respectively.Key resultsWe found evidence that the combined set of VR-12 and PROMIS items were relatively unidimensional and that we could proceed with linking. Linking worked better between the physical health than mental health scores using VR-12 item responses (vs. linking based on algorithmic scores). For each of the cross-walks, users can minimize the impact of linking error with modest increases in sample sizes.ConclusionsVR-12 scores can be expressed on the PROMIS Global Health metric to facilitate the evaluation of treatment, including CER. Extending these results to other common measures of global health is encouraged

Translation and cultural adaptation of drug use stigma and HIV stigma measures among people who use drugs in Tanzania.

IntroductionPeople who use drugs (PWUD) experience stigma from multiple sources due to their drug use. HIV seroprevalence for PWUD in Tanzania is estimated to range from 18 to 25%. So, many PWUD will also experience HIV stigma. Both HIV and drug use stigma have negative health and social outcomes, it is therefore important to measure their magnitude and impact. However, no contextually and linguistically adapted measures are available to assess either HIV or drug use stigma among PWUD in Tanzania. In response, we translated and culturally adapted HIV and drug use stigma measures among Tanzanian PWUD and described that process in this study.MethodsThis was a cross-sectional study. We translated and adapted existing validated stigma measures by following a modified version of Wild's ten steps for translation and adaptation. We also added new items on stigmatizing actions that were not included in the original measures. Following translation and back translation, we conducted 40 cognitive debriefs among 19 PWUD living with and 21 PWUD not living with HIV in Dar es Salaam to assess comprehension of the original and new items. For challenging items, we made adaptations and repeated cognitive debriefs among ten new PWUD participants where half of them were living with HIV.ResultsMost of the original items (42/54, 78%), response options and all items with new 12 stigmatizing actions were understood by participants. Challenges included response options for a few items; translation to Swahili; and differences in participants' interpretation of Swahili words. We made changes to these items and the final versions were understood by PWUD participants.ConclusionDrug use and HIV stigma measures can successfully be translated and culturally adapted among Tanzanian PWUD living with and without HIV. We are currently conducting research to determine the stigma measures' psychometric properties and we will report the results separately

AO Patient Outcomes Center: Design, Implementation, and Evaluation of a Software Application for the Collection of Patient-Reported Outcome Measures in Orthopedic Outpatient Clinics.

BACKGROUND: Patient-reported outcomes are increasingly utilized in routine orthopedic clinical care. Computer adaptive tests (CATs) from the Patient-Reported Outcomes Measurement Information System (PROMIS) offer a brief and precise assessment that is well suited for collection within busy clinical environments. However, software apps that support the administration and scoring of CATs, provide immediate access to patient-reported outcome (PRO) scores, and minimize clinician burden are not widely available. OBJECTIVE: Our objective was to design, implement, and test the feasibility and usability of a Web-based system for collecting CATs in orthopedic clinics. METHODS: AO Patient Outcomes Center (AOPOC) was subjected to 2 rounds of testing. Alpha testing was conducted in 3 orthopedic clinics to evaluate ease of use and feasibility of integration in clinics. Patients completed an assessment of PROMIS CATs and a usability survey. Clinicians participated in a brief semistructured interview. Beta-phase testing evaluated system performance through load testing and usability of the updated version of AOPOC. In both rounds of testing, user satisfaction, bugs, change requests, and performance of PROMIS CATs were captured. RESULTS: Patient feedback supported the ease of use in completing an assessment in AOPOC. Across both phases of testing, clinicians rated AOPOC as easy to use but noted difficulties in integrating a Web-based software application within their clinics. PROMIS CATs performed well; the default assessment of 2 CATs was completed quickly (mean 9.5 items) with a satisfactory range of measurement. CONCLUSION: AOPOC was demonstrated to be an easy-to-learn and easy-to-use software application for patients and clinicians that can be integrated into orthopedic clinical care. The workflow disruption in integrating any type of PRO collection must be addressed if patients\u27 voices are to be better integrated in clinical care