Nan Rothrock's research while affiliated with Northwestern University and other places

e23192 Background: Patient-reported outcome measures (PROMs) are critical for patient-centered care in oncology, as they allow patients to communicate with their care team about a range of symptoms using well-validated tools. However, successful use of PROMs in routine care depends on the clinical user experience: the opinions and experiences of the clinicians and staff who administer and make treatment decisions using PROMs. This study characterizes the use of the NIH-sponsored Patient Reported Outcomes Measurement Information System (PROMIS) in routine oncological care through a literature review and user survey. Methods: First, we conducted a narrative review of papers published from 2010 to June 2023 to identify breadth of PROMIS use in routine care. We screened 262 abstracts and identified 10 articles describing routine care in patients with cancer. We coded for institution type, PROM administration methods, and types of PROMIS measures. Next, we conducted a survey to solicit the opinions and experiences of diverse stakeholders implementing PROMIS in routine care. We contacted 209 known users of PROMIS (published authors, PROMIS API clients, and respondent referrals). Item frequencies were used to characterize survey responses. Chi-square tests were used to test differences between users in oncology and other fields. Results: Review. Nine of the 10 institutions using PROMIS in routine cancer care were academic medical centers. Articles reported on data from 2011-2021. The most popular PROMIS measure was PROMIS Global Health which provides summary scores of physical and mental health. Other popular domains included fatigue (4), physical function (3), depression (3), and anxiety (3), all measured by PROMIS computerized adaptive tests (CATs). They were most often administered in the clinic waiting room (7) or online before appointments (6). Most institutions (6) had PROMIS results automatically integrated into the electronic health record. Survey. We had 89 respondents (6 from oncology). PROMIS users in oncology were more likely to have structured training on the use of PROMIS than other users (χ2 (1,79) = 6.0, p = 0.01) and less likely to give patients direct access to their results (χ2 (1,72) = 6.0, p = 0.01). Users in oncology did not differ from the whole sample in opinions of PROMIS (% agree): users viewed PROMIS as worthwhile (86%), clinically relevant (85%), easy to administer (76%), statistically reliable (73%), and beneficial to treatment monitoring (68%), but were less confident that PROMIS improves doctor-patient communication (57%), treatment decision-making (54%), or patient satisfaction (35%). Conclusions: Conclusions PROMIS has been successfully integrated into routine oncological care in several academic medical centers. While adoption is not widespread, these initial results suggest that PROMIS is a useful tool for symptom monitoring in cancer care.

Patient-reported outcomes (PROMs) are becoming more widely implemented across health care for important reasons. However, with thousands of PROMs available and the science of psychometrics becoming more widely applied in health measurement, choosing the right ones to implement can be puzzling. This article provides a framework of the different types of PROMs by organizing them into 4 categories based upon “what” is being measured and “from whom” the questions are asked: (1) condition-specific and domain-specific, (2) condition-specific and global, (3) universal and global, and (4) universal and domain-specific. We delve deeper into each category with clinical examples. This framework can empower health care leaders and policymakers to make more informed decisions when selecting the best PROMs to implement, ensuring PROMs deliver on their potential to promote high quality, patient-centered care.

Background Patient-reported outcome (PRO) measures have become an essential component of quality measurement, quality improvement, and capturing the voice of the patient in clinical care. In 2004, the National Institutes of Health endorsed the importance of PROs by initiating the Patient-Reported Outcomes Measurement Information System (PROMIS), which leverages computer-adaptive tests (CATs) to reduce patient burden while maintaining measurement precision. Historically, PROMIS CATs have been used in a large number of research studies outside the electronic health record (EHR), but growing demand for clinical use of PROs requires creative information technology solutions for integration into the EHR. Objectives This paper describes the introduction of PROMIS CATs into the Epic Systems EHR at a large academic medical center using a tight integration; we describe the process of creating a secure, automatic connection between the application programming interface (API) which scores and selects CAT items and Epic. Methods The overarching strategy was to make CATs appear indistinguishable from conventional measures to clinical users, patients, and the EHR software itself. We implemented CATs in Epic without compromising patient data security by creating custom middleware software within the organization's existing middleware framework. This software communicated between the Assessment Center API for item selection and scoring and Epic for item presentation and results. The middleware software seamlessly administered CATs alongside fixed-length, conventional PROs while maintaining the display characteristics and functions of other Epic measures, including automatic display of PROMIS scores in the patient's chart. Pilot implementation revealed differing workflows for clinicians using the software. Results The middleware software was adopted in 27 clinics across the hospital system. In the first 2 years of hospital-wide implementation, 793 providers collected 70,446 PROs from patients using this system. Conclusion This project demonstrated the importance of regular communication across interdisciplinary teams in the design and development of clinical software. It also demonstrated that implementation relies on buy-in from clinical partners as they integrate new tools into their existing clinical workflow.

Insurance companies and the Centers for Medicaid and Medicare Services are shifting from reimbursing health providers a fixed amount for a service to reimbursement based in part on patients’ outcomes. This approach is called value-based care (VBC) and includes a wide range of programs. Although the behavioral health providers that have been impacted by VBC to date are primarily those in larger health systems, use of VBC is expanding as payors seek to combat rising health care costs and increase transparency and accountability for health services. Thus, behavioral health providers need to know about VBC models and their impact as well as steps they can take to be better prepared for this shift.

Introduction People 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. Methods This 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. Results Most 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. Conclusion Drug 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.

Importance: Patients undergoing radiation therapy (RT) for head and neck squamous cell carcinoma (HNSCC) experience a range of debilitating adverse effects (AEs). Patient-reported outcome (PRO) measures to quantify these AEs are a necessary and important component of health care; however, currently available PRO options often measure only disease-related symptoms or AEs of non-RT treatments. Objective: To develop a brief PRO measure of the most common AEs associated with RT for HNSCC. Design, setting, and participants: This was a qualitative study that followed the US Food and Drug Administration guidelines to develop a brief measure of patient-reported RT-related AEs (the Functional Assessment of Cancer Therapy-Head and Neck Radiotherapy [FACT-HN-RAD] measure). The study included (1) a literature review of clinical trials; (2) secondary analysis of retrospective concept elicitation interviews (CEIs); (3) electronic surveys of practicing radiation oncologists; (4) mapping of existing items to inform the development of the draft version of the measure; and (5) validation of content and face validity via patient cognitive interviews. Analysis was performed of CEI data and interviews with practicing radiation oncologists. Data analysis was conducted from July 1, 2022, to April 21, 2023. Exposures: Surveys and qualitative interviews. Main outcomes and measures: The most common patient-reported RT-related AEs among patients with HNSCC. Results: Of 19 CEI participants, 14 (mean [range] age, 67 [49-86] years; 12 [86%] men and 2 [14%] women) described RT-related AEs and were included in the secondary analysis. Eleven (79%) patients reported difficulty swallowing; 8 (57%), oral pain; 7 (50%), dry mouth; 7 (50%), weight loss; 6 (43%), skin burning; 5 (36%), loss of taste; 5 (36%), voice changes (36%); and 5 (36%), fatigue. Nine radiation oncologists (mean [range] time in practice, 8 [1-42] years; 5 [56%] men and 4 [44%] women) reported the most common AEs: 9 (100%) reported dysgeusia; 7 (78%), xerostomia; 7 (78%), mucositis or oral pain; 8 (89%), dysphagia or odynophagia; 6 (67%), dermatitis; and 3 (33%), fatigue. Together these data informed the development of an 8-item AE-focused measure of pain, dysphagia, xerostomia, dysgeusia, voice changes, dermatitis, fatigue, and weight loss. Cognitive interviews with 10 patients (mean [range] age, 61 [29-84] years; 8 [80%] men and 2 [20%] women) demonstrated strong face validity; all (100%) reported that the measure reflected their experience with RT and stated that the length of the questionnaire was "just right." Conclusions and relevance: The 8-item FACT-HN-RAD measure captures the most common patient- and physician-reported AEs related to RT for HNSCC. This measure offers a means to serially monitor patient-reported treatment-related AEs and recovery over time in both clinical and research settings. Future work will evaluate the psychometric validity of the measure.

Rationale: Patient-reported outcomes (PROs) are increasingly used in the context of clinical care, but evaluation of patients' perspectives of PRO-based applications in routine care remains limited. Aims and objectives: This paper investigates patients' acceptability of a personalized web-based decision report for total knee or hip replacement and identifies opportunities to refine the report. Method: This qualitative evaluation was embedded in a pragmatic cluster randomized trial of the report. We interviewed 25 patients with knee and hip osteoarthritis about their experiences using the personalized decision report in the context of a surgical consultation. The web-based report contained current descriptive PRO scores of pain, function and general physical health; tailored predicted postoperative PRO scores (i.e., personalized likely outcomes based on actual knee or hip replacement outcomes of similar patients in a national registry); and information about alternative nonoperative treatments. Two trained researchers analysed the interview data qualitatively using a combination of inductive and deductive coding. Results: We identified three major categories for evaluation: content of report, presentation of data in report and engagement with report. Patients generally liked the report overall but specifically valued different pages of the report based on where they were in the surgical decision-making process. Patients identified areas of confusion in data presentation related to graph orientation, terminology and interpretation of T-scores. Patients also highlighted support needs to meaningfully engage with the information in the report. Conclusion: Our findings highlight areas of opportunity to further refine this personalized web-based decision report and similar patient-facing PRO applications for routine clinical care. Specific examples include additional tailoring of reports via filterable web-based dashboards and scalable educational supports to facilitate more independent patient understanding and use.

Objective The objective of this study was to determine the patient-reported outcome measure (PROM) score ranges associated with descriptive labels (i.e., within normal limits, mild, moderate, severe) by using bookmarking methods with orthopedic clinicians and patients who have experienced a bone fracture. Study design and setting We created vignettes comprised of six items and responses from the Patient-Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Function, Physical Function, and Pain Interference item banks reflecting different levels of severity. Two groups of patients with fractures (n = 11) and two groups of orthopedic clinicians (n = 16) reviewed the vignettes and assigned descriptive labels independently and then discussed as a group until reaching consensus via a videoconference platform. Results PROMIS Physical Function and Pain Interference thresholds (T = 50, 40, 25/30 and T = 50/55, 60, 65/70, respectively) for patients with bone fractures were consistent with the results from other patient populations. Upper Extremity thresholds were about 10 points (1 SD) more severe (T = 40, 30, 25/20) compared to the other measures. Patient and clinician perspectives were similar. Conclusion Bookmarking methods generated meaningful score thresholds for PROMIS measures. These thresholds between severity categories varied by domain. Threshold values for severity represent important supplemental information to interpret PROMIS scores clinically.

Purpose We conducted semi-structured qualitative interviews with surgeons to assess their goals for incorporating a patient-reported outcome measure (PROM)-based shared decision report into discussions around surgical and non-surgical treatment options for osteoarthritis of the knee and hip. Methods Surgeons actively enrolling patients into a study incorporating a standardized PROM-based shared decision report were invited to participate in a semi-structured interview lasting 30 min. Open-ended questions explored how the surgeon used report content, features that were helpful, confusing, or could be improved, and how use of the report fit into the surgeon’s workflow. We used a conventional content analysis approach. Results Of the 16 eligible surgeons, 11 agreed to participate with 9 completing the interview and 2 withdrawing due to work demands. We identified 8 themes related to PROM-based report use: Acceptability, Patient Characteristics, Communication Goals, Useful Content, Not Useful Content, Challenges, Training Needs, and Recommended Improvements. Additional sub-themes emerged for Communication Goals (7) and Challenges (8). All surgeons shared positive feedback about using the report as part of clinical care. Whereas surgeons described the use of the report to achieve different goals, the most common uses related to setting expectations for post-surgical outcomes (89%) and educating patients (100%). Conclusion Surgeons tailor their use of a PROM-based report with individual patients to achieve a range of aims. This study suggests multiple opportunities to further our understanding of the ways PROMs can be used in clinical practice. The way PROM information is visually displayed and multi-component reports are assembled can facilitate diverse aims.

Background Applications of patient-reported outcome measures (PROMs) for individual patient management are expanding with the support of digital tools. Providing PROM-based information to patients can potentially improve care experiences and outcomes through informing and activating patients. This study explored patients’ perspectives on the benefits of receiving feedback on PROMs in the context of a web-based personalized decision report to guide care for their hip or knee osteoarthritis. Methods This qualitative descriptive interview study was nested in a pragmatic clinical trial of a personalized report, which includes descriptive PROM scores and predicted postoperative PROM scores. Patients completed a semi-structured interview within 6 weeks of an office visit with an orthopaedic surgeon. Only patients who reported receiving the report and reviewing it with the surgeon and/or a health educator were included. Data were iteratively analyzed using a combination of deductive and inductive coding strategies. Results Twenty-five patients aged 49–82 years (60% female, 72% surgical treatment decision) participated and described three primary benefits of the PROM feedback within the report: 1. Gaining Information About My Health Status, including data teaching new information, confirming what was known, or providing a frame of reference; 2. Fostering Communication Between Patient and Surgeon, encompassing use of the data to set expectations, ask and answer questions, and facilitate shared understanding; and 3. Increasing My Confidence and Trust, relating to the treatment outcomes, treatment decision, and surgeon. Conclusions Patients identified actual and hypothetical benefits of receiving feedback on PROM scores in the context of a web-based decision report, including advantages for those who had already made a treatment decision before seeing the surgeon. Findings provide insight into patients’ perspectives on how digital PROM data can promote patient-centered care. Results should be considered in the context of the homogeneous sample and complex trial. While participants perceived value in this personalized report, questions remain regarding best practices in patient-facing data presentation and engagement. Trial registration ClinicalTrials.gov, NCT03102580. Registered on 5 April 2017.