Integration Of Patient-reported Outcome Measures Research Articles

Using implementation science to evaluate the implementation of patient-reported outcome measures (PROMs) in a clinical heart failure care setting

BackgroundPatients with heart failure can experience poor quality of life, recurring hospitalizations, and progressive disease symptoms. Patient-reported outcome measures (PROMs) include patients’ voices in clinical care by assessing patient symptoms, function, and quality of life. In 2022, PROMs were implemented into the electronic health record system (Epic) at a large academic hospital in Toronto, ON. The purpose of this study was to use implementation science frameworks to systematically evaluate the uptake and integration of PROMs into clinical heart failure care. MethodsThe Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework guided the mixed-methods, one-year quality improvement project. Data sources included clinician use of PROMs, patient-level data on completed PROMs, and semi-structured interviews with clinicians. The PROM was the Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) which captures four domains related to heart failure: symptom frequency, physical limitations, social limitations, and quality of life. Quantitative data was analyzed using descriptive statistics and qualitative data was analyzed using behaviour change frameworks and latent content analysis. ResultsOver one year, more patients were assigned to PROMs, a higher proportion of patients completed PROMs, and approximately 80% of patients had high KCCQ-12 scores. Clinicians experience barriers related to attention and decision processes, environmental context, and professional role for integrating PROMs into practice. Suggested resources include adding language licenses for PROMs translations, reducing cognitive load for clinicians assigning and interpreting PROMs in Epic, and champions modelling PROMs in practice. ConclusionsThis study demonstrates the benefit of using implementation science frameworks to evaluate the implementation of PROMs in practice and to provide actionable recommendations to health systems.

Patient-Reported Outcome Measures in Cancer Care

Patient-reported outcome measures (PROMs) come directly from the patient, without clinician interpretation, to provide a patient-centered perspective. To understand the association of PROM integration into cancer care with patient-related, therapy-related, and health care utilization outcomes. Searches included MEDLINE and MEDLINE Epub ahead of print, in-process, and other nonindexed citations; Embase databases (OvidSP); PsychINFO; CENTRAL; and CINAHL from January 1, 2012 to September 26, 2022. Randomized clinical trials (RCTs) that enrolled adult patients (ages 18 years and older) with active cancer receiving anticancer therapy using a PROM as an intervention. Pairs of review authors, using prepiloted forms, independently extracted trial characteristics, disease characteristics, and intervention details. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guideline was followed. Random-effects analyses were conducted. Overall mortality, health-related quality of life (HRQoL) measures, and hospital utilization outcomes. From 1996 to 2022, 45 RCTs including 13 661 participants addressed the association of PROMs with outcomes considered important to patients. The addition of a PROM likely reduced the risk of overall mortality (HR, 0.84; 95% CI, 0.72-0.98; moderate certainty), improved HRQoL (range 0-100) at 12 weeks (mean difference [MD], 2.45; 95% CI, 0.42-4.48; moderate certainty). Improvements of HRQoL at 24 weeks were not significant (MD, 1.87; 95% CI, -1.21 to 4.96; low certainty). There was no association between the addition of a PROM and HRQoL at 48 weeks. The addition of a PROM was not associated with reduced ED visits (OR, 0.74; 95% CI, 0.54-1.02; low certainty) or hospital admissions (OR, 0.86; 95% CI, 0.73-1.02; low certainty). The findings of this study suggest that the integration of PROMs into cancer care may improve overall survival and quality of life.

Patient-reported outcome measures in adult HIV care: A rapid scoping review of targeted outcomes and instruments used.

There is international interest in the integration of patient-reported outcome measures (PROMs) into routine HIV care, but little work has synthesized the content of published initiatives. We conducted a rapid scoping review primarily to identify their selected patient-reported outcomes and respective instruments. Four databases were searched on 4 May 2022 (Medline, Embase, CINAHL and PsychINFO) for relevant English language documents published from 2005 onwards. Dual review of at least 20% of records, full texts and data extraction was performed. Outcomes and instruments were classified with an adapted 14-domain taxonomy. Instruments with evidence of validation were described. Of 13 062 records generated for review, we retained a final sample of 94 documents, referring to 60 distinct initiatives led mostly in the USA (n = 29; 48% of initiatives), Europe (n = 16; 27%) and Africa (n = 9; 15%). The measured patient-reported outcome domains were: mental health (n = 42; 70%), substance use (n = 23; 38%), self-management (n = 16; 27%), symptoms (n = 12; 20%), sexual/reproductive health (n = 12; 20%), physical health (n = 9; 15%), treatment (n= 8; 13%), cognition (n = 7; 12%), quality of life (n = 7; 12%), violence/abuse (n = 6; 10%), stigma (n = 6; 10%), socioeconomic issues (n = 5; 8%), social support (n = 3; 5%) and body/facial appearance (n = 1; 2%). Initiatives measured 2.6 outcome domains, on average (range = 1-11). In total, 62 distinct validated PROMs were identified, with 53 initiatives (88%) employing at least one (M = 2.2). Overwhelmingly, the most used instrument was any version of the Patient Health Questionnaire to measure symptoms of depression, employed by over a third (26; 43%) of initiatives. Published PROM initiatives in HIV care have spanned 19 countries and disproportionately target mental health and substance use.

Charting a course for global progress in PIDs by 2030 - proceedings from the IPOPI global multi-stakeholders' summit (September 2023).

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) held its second Global Multi-Stakeholders' Summit, an annual stimulating and forward-thinking meeting uniting experts to anticipate pivotal upcoming challenges and opportunities in the field of primary immunodeficiency (PID). The 2023 summit focused on three key identified discussion points: (i) How can immunoglobulin (Ig) therapy meet future personalized patient needs? (ii) Pandemic preparedness: what's next for public health and potential challenges for the PID community? (iii) Diagnosing PIDs in 2030: what needs to happen to diagnose better and to diagnose more? Clinician-Scientists, patient representatives and other stakeholders explored avenues to improve Ig therapy through mechanistic insights and tailored Ig preparations/products according to patient-specific needs and local exposure to infectious agents, amongst others. Urgency for pandemic preparedness was discussed, as was the threat of shortage of antibiotics and increasing antimicrobial resistance, emphasizing the need for representation of PID patients and other vulnerable populations throughout crisis and care management. Discussion also covered the complexities of PID diagnosis, addressing issues such as global diagnostic disparities, the integration of patient-reported outcome measures, and the potential of artificial intelligence to increase PID diagnosis rates and to enhance diagnostic precision. These proceedings outline the outcomes and recommendations arising from the 2023 IPOPI Global Multi-Stakeholders' Summit, offering valuable insights to inform future strategies in PID management and care. Integral to this initiative is its role in fostering collaborative efforts among stakeholders to prepare for the multiple challenges facing the global PID community.

Patient-Reported Outcome Measures in Patients with Thrombotic Thrombocytopenic Purpura: A Systematic Review of the Literature.

Health-related quality of life (HRQoL) impacts of thrombotic thrombocytopenic purpura (TTP) have been captured in clinical studies using patient-reported outcome (PRO) measures (PROMs) that are validated for other diseases. However, the validity evidence to support the use of existing PROMs in patients with TTP is unknown. In a systematic review of the literature, including studies of adults and children with TTP, we assessed the validity evidence for use of PROMs in clinical research and clinical practice, characterized HRQoL, described the integration of PROMs in clinical practice and evaluated PRO scores for patients with TTP compared with reference populations. From an initial 4518 studies, we identified 14 studies using 16 PROMs to assess general HRQoL domains in patients in remission. No identified studies assessed the validity of PROMs for the context of use of TTP and no studies described PROM integration into TTP clinical practice or evaluated PROMs that were specific for patients with TTP. Moreover, PRO scores were worse in patients with TTP compared with reference populations and other chronic conditions. We conclude that, in patients with TTP, PROMs pick up on important patient experiences not captured by clinical outcomes at present. There is, therefore, a need for studies that assess the validity of existing PROMs in patients with TTP to determine if TTP-specific PROMs specific to patients with TTP should be developed.

Embedding patient-reported outcomes at the heart of artificial intelligence health-care technologies.

Integration of patient-reported outcome measures (PROMs) in artificial intelligence (AI) studies is a critical part of the humanisation of AI for health. It allows AI technologies to incorporate patients' own views of their symptoms and predict outcomes, reflecting a more holistic picture of health and wellbeing and ultimately helping patients and clinicians to make the best health-care decisions together. By positioning patient-reported outcomes (PROs) as a model input or output we propose a framework to embed PROMs within the function and evaluation of AI health care. However, the integration of PROs in AI systems presents several challenges. These challenges include (1) fragmentation of PRO data collection; (2) validation of AI systems trained and validated against clinician performance, rather than outcome data; (3) scarcity of large-scale PRO datasets; (4) inadequate selection of PROMs for the target population and inadequate infrastructure for collecting PROs; and (5) clinicians might not recognise the value of PROs and therefore not prioritise their adoption; and (6) studies involving PRO or AI frequently present suboptimal design. Notwithstanding these challenges, we propose considerations for the inclusion of PROs in AI health-care technologies to avoid promoting survival at the expense of wellbeing.

Symptom burden and functioning status in patients with advanced upper gastrointestinal cancers.

311 Background: Providing accurate symptom profiles is essential to facilitate integration of patient-reported outcome measures (PROs) into routine oncologic care. This study described the symptom trajectories and functioning status in patients with advanced esophageal, gastroesophageal junction (GEJ), or gastric cancers. Methods: The study included adult patients with advanced upper gastrointestinal (UGI) cancers who were initiating a new line of therapy at time of enrollment. Multiple symptoms were assessed weekly for 12 weeks, then every two weeks until Week 36 using the electronically administered M.D. Anderson Symptom Inventory GI module (MDASI-GI). Patients also completed the EORTC QLQ-C30 every six weeks. Longitudinal PRO data were analyzed using mixed-effect models. Time to deterioration was estimated using Kaplan-Meier method. Multivariable regression models evaluated the association of PROs with tumor response. Patients were classified in a high symptom burden group if their MDASI-GI symptoms were scored > 4 (scale of 0-10) for trajectory analysis. Results: Of the 111 enrolled patients, primary tumor site was available for 108 patients: esophageal (33%), GEJ (26%), gastric (41%). The mean age was 60.2 years; 70% were male. Nineteen patients who dropped within one week after baseline reported more severe vomiting and inability to eat than those who provided more post-baseline data (n=92). For the 92 patients, the top 6 most severe items at baseline were fatigue, lack of appetite, disturbed sleep, pain, drowsiness, and inability to eat. At baseline, patients who were treatment-naïve (n=43) reported more severe symptom burden and financial difficulty than patients who had received prior therapy (n=49). Those who were treatment-naïve reported faster general activity deterioration during the first 12 weeks than those who had received prior treatment (hazard ratio=2.183, 95% CI: 1.018, 4.673). More severe shortness of breath at baseline was significantly associated with better tumor response by Week 12 (odds ratio=1.35, 95% CI: 1.05, 1.74) for all patients with tumor response data. Trajectory analysis showed high symptom burden for pain (35% of patients), fatigue (60%), disturbed sleep (32%), lack of appetite (60%), drowsiness (54%), difficulty swallowing (37%), and inability to eat (50%) during the initial 12 weeks. High symptom burden continued for pain (41% of patients), fatigue (55%), lack of appetite (59%), drowsiness (48%), and numbness (29%) for Weeks 12-36. Conclusions: This longitudinal study documented high prevalence of disease- and treatment-related symptom burden and functioning deterioration among patients with advanced UGI cancers. These data support the implementation of PRO assessment in the routine patient care of this cohort of patients with significant physical and psychosocial challenges.

Mobile Postoperative Symptom Intervention Tool and Biometric Monitoring After Radical Cystectomy: Pilot Study Evaluating Feasibility, Usability, and Potential Utility.

Mobile health technology and integration of patient-reported outcome measures into clinical interventions have the potential to transform patient care. Though patient-reported outcome measure management has been shown to improve outcomes in ambulatory care settings, few studies have examined remote patient-reported outcome measure assessment after major cancer surgery. A multiphased feasibility and usability study was designed. A mobile app-based postoperative symptom intervention tool was developed and evaluated by a focus group of bladder cancer patients and caregivers. Patients were prospectively accrued prior to cystectomy and asked to complete the daily mobile postoperative symptom intervention tool and wear biometric monitoring devices for 30 days post discharge. Retention, postoperative symptom intervention tool completion, and usability were assessed. Exploratory analysis of daily symptoms and patient-generated health information correlated signals with postsurgical complications and hospital readmission. Fifteen patients with a median age of 72 years completed 78% of daily surveys over the 30-day recovery period. Average time to complete the postoperative symptom intervention tool was 152 seconds. All patients agreed that the daily survey was easy to use, and most reported it would be a better way to communicate with the care team about symptoms than calling the clinic. Frequency and severity of patient-reported symptoms appeared to cluster prior to or at the time of complication or unplanned health care encounters on visual-analogue mapping. Using smartphone and wearable technology to capture patient-reported symptoms and biometric data is feasible and rated as highly usable by bladder cancer patients after cystectomy. Symptom scores may signal developing complications and help clinicians identify postsurgical patients who may benefit from intervention.

Assessment of Optimal Time Points for Collection of Patient Reported Outcome Measures for Patients Undergoing Radical Radiotherapy for Head and Neck Cancer

<h3>Purpose/Objective(s)</h3> Patient Reported Outcome Measures (PROMs) are validated questionnaires completed by patients to provide their perspective on their current state of health and quality of life (QoL). When used in clinical practice during radiotherapy (RT), PROMs can monitor adverse events allowing the early identification of patients who are struggling. The majority of studies assessing the collection of PROMs for patients with Head and Neck Cancer (HNC) have focused on the follow-up period. There are limited studies reporting collection during RT with limited data on the feasibility and relevance of timing for PROMs collection. We therefore aimed to (1) Assess the feasibility of PROMs collection during RT; (2) Identify appropriate time points for PROMs collection during RT. <h3>Materials/Methods</h3> Patients receiving a 6-week course of curative RT completed University of Washington (UWQOL) and MD Anderson Dysphagia Inventory (MDADI) questionnaires at baseline, weekly during RT (W1-6), weeks 2 and 6 post RT (W2POST, W6POST). PROMs were completed on paper (pPROMs) from July to December 2020, then electronically (ePROMs) until July 2021. Compliance was calculated as the number PROMs completed/number of PROMs distributed. Multivariable logistic regression was performed to assess the effect of age, treatment modality, smoking and employment status on compliance. <h3>Results</h3> 48 patients participated. The overall compliance was 73.8% (298/402); ePROMs 77.0% (188/244) and pPROMs 69.6% (110/158). Patients treated with RT were more likely to be compliant than those with CRT (OR 2.11, p = 0.011). Unemployed patients were less likely to be compliant compared to the employed (OR 0.258, p=0.003). Age and smoking status were not significant. Patients with compliance ≤70% reported more significant issues compared to those with >70% (24% vs 17%). For UWQOL, treatment modality affected the time point at which significant issues differed most compared with baseline: W2POST for CRT (10.7% vs 35.2%) and W6POST for RT (16.2% vs 34.8%). The maximal weekly increase in significant issues occurred between W2 and 3 for both CRT (+41.2%) and RT (+40.8%). At W3, the most frequently reported issue was dysgeusia in 55.0% (11/20) of patients treated with CRT. For RT, the most frequent issues related to swallowing and chewing (38.1% (8/21)). For MDADI mean composite scores, a clinically significant drop of ≥20 points from baseline occurred at W6POST for patients treated with CRT and at both W2POST and W6POST for RT. <h3>Conclusion</h3> The collection of PROMs appears feasible during RT and can be used to detect significant issues. The proportion of significant issues reported increases after W2 of treatment onwards. Therefore, collection of PROMs at baseline, W3 and W6, W2POST and W6POST would facilitate the identification and understanding of patients' needs. Future efforts should focus on the integration of PROMs into the clinical workflow.

Surgeon Perceptions of the Integration of Patient-Reported Outcome Measures into Clinical Practice

IntroductionPatient-reported outcome measures (PROMs/PROM) are standardized, validated instruments used to measure the patient's perception of their own health status including their symptoms, functional wellbeing, and mental health. Although PROMs were initially developed as research tools, their use in clinical practice for shared decision-making and to assess the impact of disease and treatment on quality of life of individual patients has been increasing. There is a paucity of research exploring providers' perspectives on the clinical integration of PROMs. We sought to use a qualitative methodology to understand surgeons' perceptions of integrating PROMs into their clinical practices. MethodsSemistructured interviews were performed from November 2019 until August 2020. All interviews were recorded and transcribed verbatim. Thematic saturation was achieved after interviewing nine surgeons representing eight surgical specialties. Qualitative interview data were thematically analyzed using an inductive approach facilitated by Atlas.ti qualitative software. ResultsForty seven unique codes were identified that fit into 21 themes that revealed five novel insights. Key insights included: (1) PROM data can modify surgical practice on an individual and institutional level, (2) Surgeon's view PROM clinical integration as a potential method of advancing patient-centered care, (3) There are various institutional processes that must be in place, including strong leadership and an integrative platform, to enable successful clinical PROM integration, (4) Surgeons appreciate challenges of integrating PROMs into surgical practice including risks of incorrect use or interpretation, and (5) A PROM platform must be adaptable to the diversity within surgery and to unique physician workflows. ConclusionsSurgeons perceived value from integrating PROMs into routine care to better inform patients during preoperative discussions and to help identify at-risk patients in the postoperative period. However, they also identified numerous barriers to the implementation of an integrated system for the routine use of PROMs in clinical practice and expressed concern about using PROMs to compare operative outcomes between surgeons. Based on this work, institutions that want to incorporate PROMs into surgical practice need a leadership team capable of supporting the change management necessary for effective integration and use a PROM platform that gives individual surgeons and surgical teams the ability to customize platforms for their unique practices.

Evaluating the measures in patient-reported outcomes, values and experiences (EMPROVE study): a collaborative audit of PROMs practice in orthopaedic care in the United Kingdom.

All national orthopaedic societies advocate the use of patient reported outcome measures (PROMs), but clear guidance on their use is limited. We utilised a collaborative methodology to perform a national audit aiming to assess the perceived variability in PROMs practice in orthopaedic surgery in the United Kingdom. A multicentre collaborative audit of practice was performed extracting PROMs data on 21 commonly performed orthopaedic procedures. For each procedure, data were collected for frequency of PROM collection, type of PROM chosen, administration intervals, method and reason for collection. Compliance with national society recommendations was undertaken. Sixty-three trusts enrolled to participate in the study with a completion rate of 60% (38 trusts). The most frequently reported PROMs were those associated with best practice tariffs (83.3% and 80.6% for hip and knee replacements, respectively). Outside incentivised programmes we observed a higher rate of variation in PROMs practice which failed to meet our audit standard. Across all procedures evaluated, 69% (221/318) of respondents to the study used paper as the primary method of PROM collection. This is the first national audit of PROMs collection in orthopaedics. The integration of PROMs within best practice tariff platforms positively influences the frequency and standardisation of collection. Outside this initiative, PROMS collection is infrequent and highly varied despite the presence of several registries. Because PROMs collection is a recommendation across all procedures using implantable devices, the success of this will depend on the adequacy of funding, resource delivery and the presence of clearer recommendations.

How to Integrate Patient-Centered Measures in Routine Care: Lessons from Belgian Experiences

BACKGROUND Against the treatment gap and the long delays in seeking treatment for mental health problems, primary care psychology (PCP) was added to reimbursed outpatient mental health services in the Belgian healthcare system. PURPOSE Within the Evaluation of Primary Care Psychology study (EPCAP), which provides evaluation of the measure of reimbursement of PCP, the objectives were: (1) To describe the patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) of patients treated with PCP and (2) formulate guidelines to integrate patient-related findings and experiences within community mental health services. METHOD 428 patients participated in an online survey at the start of their PCP treatment in Belgium and after 3 and 6 months. Besides sociodemographic characteristics, DSM-5 mental disorders, suicidality, and service use, they were questioned about their findings (PROMs) and experiences (PREMs). RESULTS Almost 90% met the criteria of a lifetime as a 12-month DSM-5 mental disorder or STB at the start of PCP treatment. Both subjective well-being and the proportion of patients who had positive experiences regarding their PCP treatment increased with 46% resp. 23.2% after 3 months and remained stable after 6 months. CONCLUSION Although PCP in Belgium serves a clinical patient population with high proportions of lifetime and 12-month mental disorders and suicidality, their subjective well-being increased after 3 months and remained stable after 6 months. Despite differences between groups of patients, PCP seems to have a positive effect on subjective well-being of these patient in short term. Integration of PROMs and PREMs into PCP were recommended.DisclosureNo significant relationships.

Integration of Patient-Reported Outcome Measures in the Electronic Health Record: The Veterans Affairs Experience.

There are growing efforts to integrate patient-reported outcome (PRO) data into electronic health records (EHRs) to bring together disparate sources of patient information and improve medical care. PRO measures can be used to assess cancer symptom presence and severity. Integrating PRO tools in EHRs can alert providers to address symptoms, which is an essential component of comprehensive oncology care. We modified a PRO used to measure cancer and end-of-life symptoms, the Edmonton Symptom Assessment System to create the Veteran Symptom Assessment System (VSAS). VSAS was implemented as an integrated PRO as part of the Veterans Administration EHR system and was used at hematology-oncology clinics in Veteran Administration (VA) medical centers in the Southeast. From 2013 to 2014, VSAS was introduced, underwent usability testing and modifications, and was finally implemented in the EHR. Between 2015 and 2019, VSAS was administered 43,883 times in 9,058 patients. Eighty-nine percent of Veterans were male, 11% were female, 52% identified as non-Hispanic White, and 43% identified as African American. Fatigue, shortness of breath with exertion, and pain were most frequently reported initially (68%, 48%, and 45%, respectively) and were most frequently rated as severe (27%, 16%, and 17%, respectively). In patients diagnosed with stage IV cancer, higher symptom burden was significantly associated with shorter overall survival. The majority of Veterans with longitudinal measurements experienced improvement in symptoms, most frequently in severe symptoms. To our knowledge, this is the first large-scale implementation of a PRO system, integrated in the VA EHR, in ambulatory patients with cancer and blood disorders. The integration of VSAS within the VA EHR is a significant demonstration and a necessary requirement for current and future systemic initiatives in cancer symptom management.

Integration of Patient-reported Outcome Measures in Pediatric Hematology: A Qualitative Methods Study.

Patient-reported outcome measures (PROMs) are self-reported questionnaires that allow patients and families to evaluate health-related experiences without influence or oversight from health care professionals. This study aimed to rate the relevance of existing PROMs for pediatric hematology patients, as identified by a recent systematic review, as well as to evaluate the receptivity of electronic PROM integration into clinical practice. Focus groups and interviews were conducted with children (10) and parents (19) impacted by nonmalignant hematological disorders, as well as with health care professionals (6). We observed strong support for the TranQol in thalassemia (100% for both parents [P] and children [C]); the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) (100% P, 75% C) and Haemophilia Quality of Life questionnaire (Haemo-QoL) (100% P and C) in hemophilia; the Pediatric Quality of Life Inventory (PedsQL) Sickle Cell Module (75% P, 100% C); and the Kids ITP Tool in immune thrombocytopenia (100% P, 66.7% C). Generic tools such as the PedsQL Generic were met with mixed support. Electronic PROM integration received universal support. We obtained strong support for the integration of a web-based platform into clinical practice and a preference for disease-specific PROMs over generic PROMs. Future projects may explore the development of a child-friendly Canadian web-based platform to standardize quality-of-life evaluation within the clinical encounter.

Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges

PROMs collection is encouraged to involve patients in their health care The patient is the most reliable reporter of their symptoms, function and health-related quality of life, and can provide a holistic viewpoint of the benefits and risks of treatments or the severity of their conditions. Including the patient’s voice is critical for shared decision making and patient-centred care. Patient-reported outcomes (PROs) are defined as “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else”.1 Patient-reported outcome measures (PROMs) are validated tools or questionnaires used to collect PROs. PROMs can complement traditional methods of clinical assessment, such as medical history and physical examination. The use of systematically collected PROMs to inform the delivery of care has been researched for many years,2, 3 with patient and health service impacts including reduced symptom burden, improved quality of life and increased survival of patients with advanced cancer,4 and reduced emergency department presentations in a broad population of patients with cancer.5 As research suggests, the collection of PROMs in the clinical setting could better measure differences in the effects of health care interventions.6 PROMs collection is encouraged in the 2020–25 National Health Reform Agreement to empower patients to be involved in their health care, improve care across the health system, and focus on outcomes that matter to patients.7 This article outlines recommendations from the Health Services Research Association of Australia and New Zealand (HSRAANZ) for implementing PROMs to guide clinical care. It also describes the challenges that may arise and future research that may assist in the effective implementation of PROMs. The recommendations presented in this article have been developed by members of the HSRAANZ PROMs Special Interest Group. Health systems are encouraged to provide incentives to clinicians and practices (eg, funding through the National Health Reform Agreement) to implement these measures effectively. This will motivate clinicians to routinely incorporate their patients’ perspective into their busy schedules. They will be more likely to implement PROMs if there is a benefit to patient care and their clinical practice, by making care easier and more timely and reducing the administrative burden. There are several challenges to consider when integrating PROMs into clinical care. As patients are recruited to PROMs collection, challenges can arise at different time points through the journey of their care (Box). It is important to note that while these exist, they are not insurmountable and can be overcome with further research on implementation in general practice and hospital clinics. Already, research into the integration of PROMs in clinical care in Australia has shown that implementation is feasible and effective. The New South Wales Agency for Clinical Innovation Patient Reported Measures program completed a pilot study8 and demonstrated the feasibility of implementing PROMs in local health districts, community services and general practice. Principles to support the analysis and use of PROMs have been developed.9 CALD = culturally and linguistically diverse population. CALD = culturally and linguistically diverse population. There is increased focus by health care systems to improve the value of care in terms of both value for investment and outcomes that patients value. Embedding patient-reported measures into the clinical setting is a key component towards achieving this. Further research is underway to evaluate the applicability and benefits and harms of collecting PROMs in routine clinical care.10 Future research should focus on investigating the feasibility of prompt feedback of patient-reported data to clinicians and incorporating the results of patient-reported measures into clinical practice. With advances in technology and increased engagement by clinicians and health systems, the implementation of PROMs will be a routine part of health care provision in the future. Rachael Morton receives salary support from a University of Sydney Robinson Fellowship and a National Health and Medical Research Council Investigator Award (APP1194703). The funding source has no role in the planning, writing or publication of this work. No relevant disclosures. Not commissioned; externally peer reviewed.

Best Practices in the Development, Translation, and Cultural Adaptation of Patient-Reported Outcome Measures for Adults With Hearing Impairment: Lessons From the Cochlear Implant Quality of Life Instruments.

This manuscript summarizes available evidence-based best practices in the development, translation, and cultural adaptation of one type of outcome measure for adults with hearing impairment, patient-reported outcome measures (PROMs). It presents the development of the Cochlear Implant Quality of Life (CIQOL) instruments and the ongoing translation and cultural adaptation of the CIQOL-35 Profile from English to French as case studies and discusses useful lessons for selecting, developing, translating, culturally adapting, and using PROMs. Relevant best practice guides are introduced, described and their steps are illustrated with examples. Future trends in hearing-related PROMs, including computerized adaptive testing, patient-reported experience measures (PREMs), economic evaluation and allocation of scarce resources, and PROMs in low-resource settings, are discussed. The manuscript concludes on the lessons that can be learned from implementation science for the successful and sustainable integration of PROMs in clinical practice.

Facilitators and barriers for implementing patient-reported outcome measures in clinical care: An academic center's initial experience

Objectives The aim of this study was to explore the perspectives of healthcare providers and researchers in a large academic hospital on facilitators and barriers for implementing patient-reported outcome measures (PROMs) in clinical care.Methods A customized web-based questionnaire was developed and disseminated to healthcare providers and researchers across multiple medical departments involved in a value-based health care initiative in the hospital. Questionnaire statements were rated using a 5-point Likert scale ranging from “strongly agree” to “strongly disagree”. In addition, 8 open-ended questions were included allowing respondents to mention additional facilitators and barriers for implementing PROMs. Descriptive statistics were used to summarize the results.Results In total, 61 participants from both surgical and non-surgical departments completed the survey. Most respondents (51%) were medical specialists and the median employment duration was 14 years. Frequently reported facilitators were the presence of a PROM coordinator in the (outpatient) clinic (85%), the integration of PROMs in the electronic health record (81%), and the intrinsic motivation of members involved in the implementation (N=9 open responses). Commonly reported barriers were language barriers (76%), IT issues (N=17 open responses), and time constraints (N=14 open responses).Conclusions For the successful implementation of PROMs in clinical practice, it is imperative that healthcare organizations consider supporting motivated healthcare professionals, involving PROMs coordinators, and investing in an adequate IT infrastructure, and removal of language barriers.

PDB32 Integration of Patient-Reported Outcome Measures in the Evaluation of Digital Health Solutions: Research in Diabetes

Although the field of Digital Health Solutions (DHS) for improving outcomes in diabetes has evolved rapidly over the last 20 years, there are still significant challenges in generating relevant evidence and demonstrating the value such solutions bring to patients and the overall health-care value chain. Research was conducted to review guidelines from national health authorities regarding patient outcomes to consider in the evaluation of DHS and to determine if existing Patient-Reported Outcome Measures (PROMs) are adequate tools for assessing the value of DHS. Guidelines for evaluating DHS from national health authorities in France (HAS), Germany (BfArM), the UK (NICE), and the US (FDA) were reviewed. Recommended patient outcomes were retrieved, as well as the role of PROMs in assessing them. In addition, a list of PROMs used in diabetes care was identified from the ProQolid database, Clinicaltrials.gov and PubMed. Each instrument was evaluated on multiple attributes, including previous use in assessing DHS, and classified by patient value domain. Five guidelines were reviewed identifying 12 domains of patient outcomes. Most guidelines focused on a particular type of DHS and there was no consensus across guidelines on patient outcomes. Nevertheless, all health authorities recognize PROMs as important tools to demonstrate the value of DHS. Overall, 62 PROMs were identified (46 diabetes-specific and 16 non-diabetes-specific) in the literature. There was a clear alignment between some of the outcomes covered in both the guidelines and PROMs, such as satisfaction, empowerment, health literacy, adherence and quality of life. However, some patient outcomes in the guidelines were poorly covered by (existing) PROMs, such as engagement, autonomy in daily life, coping strategies and reduction of efforts. It is urgent to develop frameworks aiming at integrating relevant domains of patient value in the evaluation of DHS to ensure alignment across national jurisdictions in reimbursement processes.

A Tiered Approach for Integrating Patient Outcome Measures into the Curriculum

Context Knowledge and understanding of effective practices for integration of patient-reported outcome measures (PROMs) within athletic training curricula are necessary to bridge the gaps between didactic application, content assessment, and clinical implementation. Objective To provide athletic training educators with a tiered approach to implement content and assessments related to PROMs in the athletic training curriculum. Background An emphasis in the athletic training community is the need to incorporate patient-oriented evidence that matters into clinical practice. One way of achieving this transfer of knowledge is incorporating PROMs into athletic training curriculum. The 2020 Commission on Accreditation of Athletic Training Education (CAATE) Standards include PROMs and strategies to evaluate them for use in clinical practice to improve patient care. Thus, stakeholders responsible for students' education must have the knowledge and ability to properly address these standards in order for students to utilize these skills as future athletic trainers. Description This article offers an approach for educators to teach and assess PROMs within their athletic training curriculum. Clinical Advantages By utilizing an effective teaching approach for the implementation of PROMs, educators, preceptors, and students may collectively integrate these validated tools accurately into patient care to provide a more holistic practice. In addition, using a tiered approach will increase understanding and confidence for athletic trainers who have identified barriers and may not have prior clinical experience in the implementation of PROMs with patient care. Conclusions The knowledge and use of PROMs are expected of students in CAATE-accredited athletic training programs. In order to ensure and enhance the transfer of knowledge from the didactic setting to clinical practice, the use of a tiered approach may benefit athletic training educators as they integrate this content into coursework. In turn, perhaps future clinicians may be more apt to value the benefits of PROMs.

52528 Implementation of Web-Based Patient-Reported Outcome Measures (PROMs) in the Clinical Care of Systemic Lupus Erythematosus (SLE): A Multi-Center Prospective Cohort Study

ABSTRACT IMPACT: The integration of patient-reported outcome measures into clinical care is feasible and can facilitate patient-centered care for individuals with systemic lupus erythematosus. OBJECTIVES/GOALS: Patient-reported outcome measures (PROMs) are powerful tools which can facilitate patient-centered care by highlighting individuals’ experience of illness. The aim of this study was to assess the feasibility and impact of implementing web-based PROMs in the routine clinical care of outpatients with systemic lupus erythematosus (SLE). METHODS/STUDY POPULATION: Outpatients with SLE were enrolled in this longitudinal cohort study at two academic medical centers. Participants completed PROMIS computerized adaptive tests assessing multiple quality of life domains at enrollment and prior to two consecutive routinely scheduled rheumatology visits using the ArthritisPower research registry mobile or web-based application. Score reports were shared with patients and providers before the visits. Patients and rheumatologists completed post-visit surveys evaluating the utility of PROMs in the clinical encounters. Proportions with confidence intervals were calculated to evaluate survey completion rates and responses. RESULTS/ANTICIPATED RESULTS: A total of 105 SLE patients and 16 rheumatologists participated in the study. Subjects completed PROMs in 159 of 184 eligible encounters (86%, 95% CI 81 - 91), including 90% of visit 1’s (95% CI 82 - 95) and 82% of visit 2’s (95% CI 72 - 90. Patients and rheumatologists found that PROMs were useful (91% and 83% of encounters respectively) and improved communication (86% and 72%). Rheumatologists reported that PROMs impacted patient management in 51% of visits, primarily by guiding conversations (84%), but also by influencing medication changes (15%) and prompting referrals (10%). There was no statistically significant difference in visit length before (mean=19.5 min) and after (mean=20.4 min) implementation of PROMs (p=0.52). DISCUSSION/SIGNIFICANCE OF FINDINGS: The remote capture and integration of web-based PROMs into clinical care was feasible in a diverse cohort of SLE outpatients. PROMs were useful to SLE patients and rheumatologists and promoted patient-centered care by facilitating communication.