Implementation Of Patient-reported Outcome Measures Research Articles

The influence of patient-reported outcome measures on healthcare delivery: A review of methodologies and applications

Patient-Reported Outcome Measures (PROMs) have emerged as integral tools in assessing healthcare outcomes from the patient's perspective. This comprehensive review explores the methodologies employed in the development, administration, and validation of PROMs, shedding light on their applications and influence on healthcare delivery. It examines the various modes of PROMs administration, including the burgeoning role of technology through electronic platforms and mobile applications. Challenges related to patient adherence, engagement, and disparities in technological access are discussed, offering insights into potential barriers. It meticulously outlines the multifaceted applications of PROMs in healthcare. From influencing clinical decision-making and quality of care assessments to fostering patient-centered care and contributing to health policy initiatives, PROMs have permeated diverse aspects of healthcare delivery. The review also explores the role of PROMs in shaping research endeavors, serving as essential components in health policy initiatives and advancing the understanding of patient outcomes and experiences. While emphasizing the positive impact of PROMs, the paper addresses challenges and considerations associated with their use, including standardization issues, interpretation challenges, and technology-related barriers. The future directions and opportunities section examines potential advancements in personalized medicine, the integration of technology, and the empowerment of patients through increased involvement in their healthcare journey. Ethical considerations surrounding privacy, confidentiality, and informed consent in PROMs implementation are also scrutinized. This review consolidates current knowledge on PROMs methodologies and applications, offering a comprehensive understanding of their influence on healthcare delivery. The paper emphasizes the need for ongoing research, standardization efforts, and the ethical use of PROMs as they continue to shape a patient-centric and personalized approach to healthcare.

Patient-reported outcome measures in Value-Based Healthcare: A Multiple Methods Study to assess Patient-centredness

ObjectivesValue-based healthcare (VBHC) involves the use of standardised outcome measures, including patient-reported outcome measures (PROMs). This study aimed to assess to what extent discussion of PROMs is associated with patient- and person-centredness. MethodsThis study used a separate sample pre-/post-test design and multiple methods (observations, questionnaires, and interviews) in a VBHC care pathway for patients with a vestibular schwannoma, to assess to what extent the implementation of PROMs is associated with a difference in patient- and person-centredness. ResultsA total of 139 patients with a vestibular schwannoma and their four treating physicians were included in the study. No significant differences were found in observed patient-centredness (Mpre=6.71±2.42 vs. Mpost=6.93±2.01; P=0.60) or patient-reported patient-centredness (Mpre=1.73 vs. Mpost=1.68; P=0.63) and person-centredness after PROM implementation (Mpre=11.81 vs. Mpost=13.42; P=0.34). We observed more discussion of patient-reported outcomes. However, a majority of patients did not expect PRO discussion in consultations. ConclusionsThe implementation of standardised PROMs in a VBHC care pathway was associated with more discussion on patient-reported outcomes in clinical consultations. Overall, the implementation of PROMs was not observed or perceived as leading to more patient-centred consultations. Practice implicationsPhysicians should assess whether the discussion of PROMs add value collaboratively with patients.

Screening for Palliative Care Need in Oncology: Validation of Patient-Reported Outcome Measures

ContextLeading oncology societies recommend monitoring symptoms and support needs through patient-reported outcome measures (PROMs), but their use for assessing specialist palliative care (SPC) need has not yet been explored. Research on SPC integration has focused on staff-assessed screening tools, which are time-consuming. ObjectivesThis study aimed to assess the diagnostic validity of the Integrated Palliative Outcome Scale (IPOS) and NCCN Distress Thermometer (NCCN DT) in identifying need for SPC in patients with incurable cancer. MethodsIn a cross-sectional study, patients with incurable cancer (prognosis <2 years) completed PROMs. In an independent process, the palliative care consultation service (PCCS) assessed the need for SPC in each patient through multiprofessional case review, and this was used as the reference standard. ROC analyses were employed to determine diagnostic validity. ResultsOf the 208 participants, 71 (34.1 %) were classified as having SPC need by the PCCS. Aiming for a minimum sensitivity of 80%, a cut-off of ≥2 items with high/very high burden in the IPOS resulted in a 90.2% sensitivity (specificity = 50; AUC = 0.791; CI 95%= 0.724–0.858). A cut-off of ≥5 resulted in a sensitivity of 80 % for NCCN DT (specificity = 49.5 %; AUC = 0.687; CI 95% = 0.596–0.777). ConclusionPROMs are useful for identifying SPC need in cancer patients. Their implementation might facilitate timely integration of SPC. Future research should focus on an integrated assessment approach with PROMs that combines the requirements of the different specialties to save patient and staff resources.

The implementation, use and impact of patient reported outcome measures in value-based healthcare programmes: A scoping review.

Value-Based Healthcare (VBHC) focuses on the value of patient outcomes and is achieved by ensuring resources already available are managed to realise the best possible individual and population health outcomes. Patient reported outcome measures (PROMs) measure the impact of illnesses from the patient perspective. We conducted a scoping review to understand how PROMs were implemented and used, and their impact in the context of VBHC. Arksey and O'Malley's overarching framework supplemented by principles from mixed-methods Framework Synthesis were used. CINAHL, Cochrane Library, EMBASE, MEDLINE, PsycINFO, Web of Science, Google Scholar and reference lists were searched. An a priori data extraction framework was created using the review question and objectives as key domains against which to extract data. Mixed-methods data were organised, integrated and preserved in original format and reported for each domain. Forty-three studies were included with 60,200 participants. Few studies reported a well-developed programme theory and we found little robust evidence of effect. PROMs were universally considered to have the potential to increase patient satisfaction with treatment and services, enhance patient awareness of symptoms and self-management, and improve health outcomes such as quality of life and global health status. Evidence is currently limited on how PROMs work and how best to optimally implement PROMs to achieve the target outcome. Implementation challenges commonly prevented the realisation of optimal outcomes and patients generally needed better and clearer communication about why PROMs were being given and how they could optimally be used to support their own self-management. PROMSs have yet to demonstrate their full potential in a VBHC context. Optimal PROMs implementation is poorly understood by clinicians and patients. Future studies should explore different models of PROM implementation and use within VBHC programmes to understand what works best and why for each specific context, condition, and population.

A Qualitative Study Exploring the Regional Feasibility of Patient-Reported Outcome Measures (PROMs) Data Collection for Orthopedic Trauma Patients.

Behavioral health has been shown to impact both short- and long-term health outcomes in trauma patients. Recommendations for screening for behavioral health concerns in the acute setting exist, but longitudinal data collection is infrequently performed. The Trauma Quality Improvement Program describes the importance of patient-reported outcome measures (PROMs), including behavioral health data. In thisqualitative feasibility study, a multidisciplinary team participated inone-hour virtual focus groups; a semi-structured interview guide was used to ascertain feedback on a proposed PROMs study design. This study utilized a qualitative methodology to reveal thematic results from the staff feedback to determine the feasibility of the proposed study design. Three virtual one-hour focus groups consisting of a combination of seven trauma program managers and orthopedic practice managers were asked questions related to the feasibility of a PROMs study design before thematic saturation was reached.Through the analysis, four themes emerged: barriers, possible improvements, representation and research design. Themes included subthemes as well. Noteworthy results included the impact of an integrated orthopedic practice and the technological options available for use. This study revealed the barriers that would exist in the implementation of PROMs for orthopedic trauma patients, which may be useful when designing data collection procedures for PROMs. The results related to barriers may assist other trauma centers or regional trauma systems in designing an optimal methodology for PROMs data. Furthermore, the American College of Surgeons might consider these results prior to any mandated implementation of PROMs for trauma centers to avoid any possible burden on staff and systems.

Implementing paediatric patient-reported outcome measures in outpatient asthma clinics: a feasibility assessment study

ObjectiveImplementation of patient-reported outcome measures (PROMs) is limited in paediatric routine clinical care. The KidsPRO programme has been codesigned to facilitate the implementation of PROMs in paediatric healthcare settings. Therefore,...

Piloting patient-reported outcome measures for evaluation of the Irish Chronic Disease Programme

Abstract Background The Irish National Integrated Care Programme for Chronic Disease (ICPCD) aims to deliver end-to-end, patient-centred care across three clinical programmes; Heart, Respiratory and Diabetes. Patient-reported outcome measures (PROMs) are a means of objectively measuring changes in patients’ subjectively-perceived health status over time in response to services. As such, PROMs facilitate service monitoring and evaluation and are an important tool for the ICPCD to ensure optimal, patient-centred, value-based healthcare delivery. Methods To select the most appropriate PROMs instrument for use across ICPCD, comprehensive literature review was undertaken followed by key stakeholder consultation in winter 2022. Following consideration against a set of pre-determined criteria the EQ-5D-5L, a well-validated, reliable PROMs instrument, was selected as the most appropriate PROMs instrument for use. Study design involved pilot implementation of EQ-5D-5L in one ICPCD ambulatory care hub service followed by mixed methods evaluation of staff experience of the pilot. Results The pilot was conducted from April to June 2023 among a socio-demographically diverse sample of patients attending their first and last episode of care with the ICPCD diabetic patient education service in Galway. Following service attendance there was a significant aggregate improvement in self-reported overall health rating but no significant change in self-reported mobility, self-care, usual activities, pain/discomfort or anxiety/depression. Predominant staff concerns included staff and patient burden and the need for adequate staff resourcing and information technology support. Conclusions In conjunction with key national stakeholders findings from the pilot will be used to support the development of a PROMs implementation plan at scale for adoption across all ICPCD services. Ultimately national implementation will support the ongoing delivery of high quality patient-centred care within ICPCD services. Key messages • PROMs facilitate service evaluation and are an important tool for the Irish National Integrated Care Programme for Chronic Disease (ICPCD) to ensure optimal patient-centred healthcare delivery. • This pilot will support PROMs implementation at scale across ICPCD services and ultimately reinforce the ongoing delivery of high-quality, value-based, integrated healthcare.

Best Practices for the Electronic Implementation and Migration of Patient-Reported Outcome Measures

While the use of electronic methods to collect patient-reported outcome data in clinical trials continues to increase, it remains the case that many patient-reported outcome measures (PROMs) have originally been developed and validated on paper. Careful consideration during the move from paper PROMs to electronic format is required to preserve the integrity of the measure and ensure a “faithful migration.” Relevant literature has long called out the importance of following migration best practices during this process; nevertheless, such best practices are distributed across multiple documents. This article consolidates and builds upon existing electronic PROM implementation best practice recommendations to provide a comprehensive, up-to-date, single point of reference. It reflects the current consensus based on the significant advances in technology capabilities and knowledge gleaned from the growing evidence base on electronic migration and implementation, to balance the need for maintaining the integrity of the measure while optimizing respondent usability. It also specifies whether the practice is rooted in evidence or expert consensus, to enable those using these best practices to make informed and considered decisions when conducting migration.

Patient‐reported outcomes in the Kingdom of Saudi Arabia: An insight for a healthcare system undergoing reform

AbstractPatient‐reported outcomes (PROs) are closely related to the delivery of high‐quality care and services. Patient‐reported outcome measures (PROMs) are the tools used to measure the PROs. Despite the challenges and barriers associated with using PROs and PROMs, measuring PROs is valuable for a patient's health status and advancing evidence‐based medicine. Real‐world implementation of PROMs may especially open possibilities for healthcare systems under reform, such as Saudi Arabia. This paper highlights the concepts of PROs and PROMs. Moreover, it distinguishes between PROs and other concepts such as patient experience, quality of life, and patient satisfaction. It also explores the available literature in Saudi Arabia and the world regarding PROs and their role in improving healthcare systems. Last, this paper advocates for utilizing the national and comprehensive tools of PROMS in different levels and disciplines.

Using Publicly Reported Global Hospital Rankings to Improve Dissemination of Patient-Reported Outcome Measures (PROMs)

Summary Patient-reported outcome measures (PROMs) represent an essential element of value-based care in health care sectors worldwide by transferring the quality definition from process- to outcome-based indicators that focus on the patients’ needs. However, the adoption rate of PROMs in hospitals is still low. To address this challenge and to account for the growing importance of value-based health care, Newsweek and Statista developed a PROMs implementation survey along with a global board of medical experts to determine the current state of PROMs implementation in hospitals. The results of this survey were incorporated into the 2023 editions of Newsweek’s World’s Best Specialized Hospitals and World’s Best Hospitals rankings. The inclusion of PROMs adds a patient outcome–focused dimension that overcomes methodologic limitations and improves the comprehensiveness of these rankings. Furthermore, the public reporting of clinical outcomes such as PROMs serves as a catalyst to improve the quality of care. In this article, the authors describe what they believe is the increasing relevance of value-based health care and PROMs, the process of developing and launching the PROMs implementation survey, and its incorporation into hospital rankings to improve the value of care for patients on a global level.

Clinical Integration of Digital Patient-Reported Outcome Measures in Primary Health Care for Chronic Disease Management: Protocol for a Systematic Review.

Health measurement guides policies and health care decisions are necessary to describe and attain the quintuple aim of improving patient experience, population health, care team well-being, health care costs, and equity. In the primary care setting, patient-reported outcome measurement allows outcome comparisons within and across settings and helps improve the clinical management of patients. However, these digital patient-reported outcome measures (PROMs) are still not adapted to the clinical context of primary health care, which is an indication of the complexity of integrating these tools in this context. We must then gather evidence of their impact on chronic disease management in primary health care and understand the characteristics of effective implementation. We will conduct a systematic review to identify and assess the impact of electronic PROMs (ePROMs) implementation in primary health care for chronic disease management. Our specific objectives are to (1) determine the impact of ePROMs in primary health care for chronic disease management and (2) compare and contrast characteristics of effective ePROMs' implementation strategies. We will conduct a systematic review of the literature in accordance with the guidelines of the Cochrane Methods Group and in compliance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for its reporting. A specific search strategy was developed for relevant databases to identify studies. Two reviewers will independently apply the inclusion criteria using full texts and will extract the data. We will use a 2-phase sequential mixed methods synthesis design by conducting a qualitative synthesis first, and use its results to perform a quantitative synthesis. This study was initiated in June 2022 by assembling the research team and the knowledge transfer committee. The preliminary search strategy will be developed and completed in September 2022. The main search strategy, data collection, study selection, and application of inclusion criteria were completed between October and December 2022. Results from this review will help support implementation efforts to accelerate innovations and digital adoption for primary health care and will be relevant for improving clinical management of chronic diseases and health care services and policies. PROSPERO International Prospective Register of Systematic Reviews CRD42022333513; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=333513. DERR1-10.2196/48155.

Implementation of Patient-reported Outcome Measures for Your Practice Needs.

Patient-reported outcome (PRO) measures offer a unique opportunity to systematically incorporate patient perspectives of their health and wellbeing into treatment, view progress over time, and develop opportunities related to clinical decision support, shared decision making, and outcomes-driven payment and practice transformation. As healthcare institutions increasingly look toward adopting PRO measures in their practices, more information is needed regarding the practicalities of implementing a successful PRO program outside of the research setting. This article offers a stepwise approach to implementing a PRO program while overcoming barriers and leveraging facilitators that commonly exist in the realms of human contribution or team building, technological infrastructure, and process design. To routinely adopt and implement these instruments, we need a multifaceted approach to operationalizing patient-reported outcome measure (PROMs) for high-value outcomes-driven, patient-centered musculoskeletal care.

Supportive care needs in Australian melanoma patients and caregivers: results from a quantitative cross-sectional survey

PurposeThis study aimed to investigate the supportive care needs of Australian melanoma patients and their caregivers to form the basis for improving services.MethodsGeneral and melanoma-related supportive care needs in melanoma patients were measured using the SCNS-SF34 and SCNS-M12 respectively, whereas caregivers completed the SCNS-P&C. Patients also completed the MCQ-28 and FCRI-9, with all participants completing the QLQ-C30, DASS-21, and questions measuring utilisation and preference for supportive health services. Multivariable stepwise logistic regression was used to identify variables associated with unmet needs in melanoma patients.ResultsA total of 56 early-stage patients, 100 advanced-stage patients, and 37 caregivers participated. At least three-quarters (ge 75%) of each participant group reported at least one unmet need. Of the ten most reported unmet needs in each participant group, at least six (ge 60%) were related to psychological and emotional well-being, with access to a psychologist the most desired service (> 25%). Fear of cancer recurrence was equally prevalent in both patient groups at a level indicative of need for intervention. Advanced-stage patients reported significantly (p < 0.05) more unmet psychological, physical and daily living, and sexuality needs, and significantly (p < 0.05) worse functioning than early-stage patients.ConclusionAustralian melanoma patients and caregivers report substantial unmet supportive care needs, particularly regarding their psychological and emotional well-being. Psychological and emotional well-being services, such as access to a clinical psychologist or implementation of patient-reported outcome measures, should be incorporated into routine melanoma care to address unmet patient and caregiver needs and improve well-being.

Uptake of pediatric patient-reported outcome and experience measures and challenges associated with their implementation in Alberta: a mixed-methods study

BackgroundImplementing Patient-reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) is an effective way to deliver patient- and family-centered care (PFCC). Although Alberta Health Services (AHS) is Canada's largest and fully integrated health system, PROMs and PREMs are yet to be routinely integrated into the pediatric healthcare system. This study addresses this gap by investigating the current uptake, barriers, and enablers for integrating PROMs and PREMs in Alberta's pediatric healthcare system.MethodsPediatric clinicians and academic researchers with experience using PROMs and PREMs were invited to complete a quantitative survey. Additionally, key stakeholders were qualitatively interviewed to understand current challenges in implementing pediatric PROMs and PREMs within AHS. Quantitative data gathered from 22 participants were descriptively analyzed, and qualitative data from 14 participants were thematically analyzed.ResultsParticipants identified 33 PROMs and 6 PREMs showing diversity in the types of pediatric PROMs and PREMs currently being used in Alberta and their mode of administration. The qualitatively identified challenges were associated with patients, family caregivers, and clinicians. The absence of system-level support, such as integration within electronic medical records, is considered a significant system-level challenge.ConclusionsThe significant variation in the types of PROMs and PREMs used, the rationale for their use, and their mode of administration demonstrate the diverse and sporadic use of these measures in Alberta. These findings highlight the need for province-wide uniform implementation of pediatric PROMs and PREMs in Alberta. Our results could benefit healthcare organizations in developing evidence-based PROM and PREM implementation strategies in pediatrics.

Barriers and Best Practices for the Use of Patient-Reported Outcome Measures in Emergency Medicine.

Patient-reported outcome measures are commonly used in clinical trials and have been incorporated into routine clinical care in select specialties but have not been widely implemented in emergency medicine research and clinical care. We describe measurement-related barriers to patient-reported outcome measure use in the emergency department; administrative and practical considerations; implications of developing novel emergency medicine-specific patient-reported outcome measures; and key considerations for the use of patient-reported outcome measures in emergency medicine research and clinical care. Despite the unique barriers of the ED environment, potential solutions include the use of ED-validated patient-reported outcome measures when available; adapting existing short-form, multidimensional patient-reported outcome measures previously validated in diverse populations, ideally using computer-adapted testing; and collecting responses during anticipated wait times. With this work, we aim to inform barriers and best practices to the use of patient-reported outcome measures in emergency medicine research and clinical care to support future, more widespread implementation of patient-reported outcome measures within emergency care. The successful adoption of patient-reported outcome measures for diverse ED patient populations within the unique constraints of the acute care environment may help researchers, clinicians, and policymakers improve the quality and patient-centeredness of acute care.

Use of patient-reported outcome measures in patients with venous thromboembolism: communication from the ISTH SSC Subcommittee on Predictive and Diagnostic Variables in Thrombotic Disease

Patient-reported outcome measures (PROMs) are patient-completed instruments that capture patient-perceived health status and well-being. PROMs measure disease impact and outcomes of care as reported by those who experience the disease. After pulmonary embolism or deep vein thrombosis, patients may face a broad spectrum of complications and long-term sequelae beyond the usual quality-of-care indicators of recurrent venous thromboembolism (VTE), bleeding complications, and survival. The full impact of VTE on individual patients can only be captured by assessing all relevant health outcomes from the patient’s perspective in addition to the traditionally recognized complications. Defining and measuring all important outcomes will help facilitate treatment tailored to the needs and preferences of patients and may improve health outcomes. The International Society on Thrombosis and Haemostasis Scientific and Standardization Committee Subcommittee on Predictive and Diagnostic Variables in Thrombotic Disease endorsed the International Consortium for Health Outcomes Measurement (ICHOM) VTE project on development of a standardized set of patient-centered outcome measures for patients with VTE. In this communication, the course and result of the project are summarized, and based on these findings, we propose recommendations for the use of PROMs during clinical follow-up of patients with VTE. We describe challenges to implementation of PROMs and explore barriers and enablers.

Facing the challenges of PROM implementation in Dutch dialysis care: Patients' and professionals' perspectives.

Patient Reported Outcome Measures (PROMs) are increasingly used in routine clinical practice to facilitate patients in sharing and discussing health-related topics with their clinician. This study focuses on the implementation experiences of healthcare professionals and patients during the early implementation phase of the newly developed Dutch set of dialysis PROMs and aims to understand the process of early implementation of PROMs from the users' perspectives. This is a qualitative study among healthcare professionals (physicians and nursing staff: n = 13) and patients (n = 14) of which 12 were receiving haemodialysis and 2 peritoneal dialysis. Semi-structured interviews were used to understand the barriers and facilitators that both professionals and patients encounter when starting to implement PROMs. The early PROM implementation process is influenced by a variety of factors that we divided into barriers and facilitators. We identified four barriers: patient´s indifference to PROMs, scepticism on the benefits of aggregated PROM data, the limited treatment options open to doctors and organizational issues such as mergers, organizational problems and renovations. We also describe four facilitators: professional involvement and patient support, a growing understanding of the use of PROMs during the implementation, quick gains from using PROMs such as receiving instant feedback and a clear ambition on patient care such as a shared view on patient involvement and management support. In this qualitative study carried out during the early implementation phase of the Dutch dialysis PROM set, we found that patients did not yet consider the PROM set to be a useful additional tool to share information with their doctor. This was despite the professionals' primary reason for using PROMs being to improve patient-doctor communication. Furthermore, the perceived lack of intervention options was frustrating for some of the professionals. We found that nurses could be important enablers of further implementation because of their intensive relationship with dialysis patients.

Comparison of quality of life, symptom and functional outcomes following surgical treatment for colorectal neoplasia.

Colorectal surgical procedures can have a significant impact on quality-of-life (QoL), functional and symptom outcomes. This retrospective study conducted in a tertiary care center evaluated the influence of four colorectal surgical procedures on patient-reported outcome measures (PROMs). 512 patients undergoing colorectal neoplasia surgery between June 2015 and December 2017 were identified via the Cabrini Monash Colorectal Neoplasia database. Primary outcomes measured were the mean changes in PROMs following surgery utilizing the International Consortium of Health Outcome Measures colorectal cancer (CRC) PROMs. 242 patients from 483 eligible patients responded (50% participation rate). Responders and non-responders were comparable in median age (72 vs. 70 years), gender (48% vs. 52% male), time from surgery (<1 and >1 year), overall stage at diagnosis and type of surgery. Respondents underwent either a right hemicolectomy, ultra-low anterior resection, abdominoperineal resection or a transanal endoscopic microsurgery/transanal minimally invasive surgery. Right hemicolectomy patients reported the best post-operative function and reduced symptoms, significantly better (P < 0.01) than ultra-low anterior resection patients who reported the worst outcomes in multiple areas (body image, embarrassment, flatulence, diarrhoea, stool frequency). Furthermore, patients undergoing an abdominoperineal resection reported the worst scores for body image, urinary frequency, urinary incontinence, buttock pain, faecal incontinence and male impotence. The differences in PROMs in CRC surgical procedures is demonstrable. The worst post-operative functional and symptom scores were reported after either an ultra-low anterior resection or an abdominoperineal resection. Implementation of PROMs will identify and aid early patient referral to allied health and support services.

AOA Critical Issues: Patient-Reported Outcome Measures

Patient-centered care is essential to providing high-quality value-based care. Patient-reported outcome measures (PROMs) are arguably the best tools available to orthopaedic providers for providing patient-centered care. Many clinical opportunities exist for the implementation of PROMs into routine practice, such as shared decision-making, mental health screening, and prediction of postoperative disposition. Routine use of PROMs is also an adjunct to the streamlining of documentation, patient intake, and telemedicine visits, and hospitals can aggregate PROMs for the purpose of risk stratification. Physicians can harness the power of PROMs for quality improvement initiatives and improvement of the patient experience. Despite these numerous applications, PROMs are frequently underutilized tools. Understanding the many benefits of PROMs may allow orthopaedic practices to justify investing in these valuable tools.

Implementation of Patient-Reported Outcome Measures for Gender-Affirming Care Worldwide

Gender-affirming care is a key clinical area that can benefit from implementation of patient-reported outcome measures (PROMs). Identifying barriers to and enablers of PROM implementation is needed to develop an evidence-based implementation strategy. To identify (1) PROMs previously implemented for gender-affirming care and constructs measured, (2) how patients completed PROMs and how results were reported and used, and (3) barriers to and enablers of PROM implementation. In this systematic review, PubMed, Embase, MEDLINE, PsycINFO, CINAHL, and Web of Science were searched from inception to October 25, 2021, and updated on December 16, 2022. Gray literature was searched through gray literature database, online search engine, and targeted website searching. Inclusion criteria were (1) original articles of (2) a formally developed PROM or ad hoc instrument administered for gender-affirming care to (3) patients accessing gender-affirming care. The Critical Appraisal Skills Programme tool was used to evaluate quality of included studies. This review was registered on PROSPERO (CRD42021233080). In total, 286 studies were included, representing 85 395 transgender and nonbinary patients from more than 30 countries. A total of 205 different PROMs were used in gender-affirming care. No studies described using an implementation science theory, model, or framework to support PROM deployment. Key barriers to PROM implementation included issues with evidence strength and quality of the PROM, engaging participants, and PROM complexity. Key enablers of PROM implementation included using PROMs validated for gender-affirming care, implementing PROMs able to be deployed online or in person, implementing PROMs that are shorter and reduce patient burden, engaging key stakeholders and participants as part of developing an implementation plan, and organizational climate. In this systematic review of barriers to and enablers of PROM implementation in gender-affirming care, PROM implementation was inconsistent and did not follow evidence-based approaches in implementation science. There was also a lack of patient input in creating implementation strategies, suggesting a need for patient-centered approaches to PROM implementation. Frameworks created from these results can be used to develop evidence-based PROM implementation initiatives for gender-affirming care and have potential generalizability for other clinical areas interested in implementing PROMs.