Use Of Patient-reported Outcome Measures Research Articles

The usefulness of patient-reported outcome measures in decision making in Chagas cardiomyopathy: a scoping review.

Chagas cardiomyopathy (ChC) presents many biopsychosocial complexities, highlighting the need to have patient self-report questions. This study demonstrates the scope of the use of patient-reported outcome measures (PROMs) in patients with ChC and highlights the main research gaps. This is a scoping review and the search strategy was performed in the Online Medical Literature Analysis and Retrieval System (MEDLINE), Excerpta Medica database (EMBASE), Accumulated Index of Nursing and Allied Health Literature (CINAHL), Cochrane Central, Latin American Literature and Caribbean in Health Sciences (LILACS) and Diagnostic Test Accuracy (DITA). The search identified 4484 studies and 20 studies met the inclusion criteria. The Short-Form of 36 items (SF-36) had potential prognostic value and the ability to identify systolic dysfunction. The Human Activity Profile was able to screen for functional impairment, and the New York Heart Association showed potential prognostic value. The SF-36 and Minnesota Living with Heart Failure Questionnaire were responsive to interventions. The pharmaceutical care affected adherence to treatment as assessed by the Morisky score and also for SF-36. Despite the increased use of PROMs, there are still a large number of gaps in the literature, and further studies using PROMs are needed.

Are Clinical Practice Guidelines Representative of Patients with Distal Radius Fractures? A Review of Patient Demographics and Patient-Reported Outcome Measures Used to Inform Guidelines

Clinical practice guidelines (CPGs) are recommendations developed for broad application to optimize high-quality care and decision-making. The composition of patients and outcome measures used in studies informing CPGs; however, has not been rigorously evaluated. With growing evidence that outcomes in musculoskeletal surgery vary by sociocultural factors, we aimed to: (1) review the linguistic, racial, and ethnic representation of the patients in the studies informing CPGs for distal radius fractures and (2) assess their use of linguistically and culturally adapted patient-reported outcome measures (PROMs). The American Academy of Orthopaedic Surgeons website was used to identify relevant studies. Key variables were extracted, including inclusion and exclusion criteria, language of study, patient language and proficiency, patient race and ethnicity, and use of translated or culturally adapted PROMs. If provided, the clinical trial registration page for the study was evaluated. Descriptive statistics were used to describe the frequency of each variable. Fifty-four published texts were evaluated. Participant language was reported in four (7%) of the published texts and six (11%) when including the clinical trial registration information. Of the published texts, one (2%) reported ethnic group/race data and 40 (74%) used PROMs. Of those using PROMs, eight (20%) of 40 reported the use of translated PROMs, and three (8%) of 40 reported the use of culturally adapted PROMs. There is a lack of reporting of linguistic, racial, and ethnic data and inconsistent use of PROMs, particularly those that are translated and culturally adapted, in studies included in the American Academy of Orthopaedic Surgeons CPG for distal radius fractures. As sociocultural characteristics and PROMs are associated with outcomes, ensuring they are broadly represented in studies, may improve equity and shared decision-making. Greater inclusion and reporting of demographic data and PROMs are required in musculoskeletal studies to ensure broad applicability and advance health equity.

Can prediction models for hospital readmission be improved by incorporating patient-reported outcome measures? A systematic review and narrative synthesis.

To investigate the roles, challenges, and implications of using patient-reported outcome measures (PROMs) in predicting the risk of hospital readmissions. We systematically searched four bibliometric databases for peer-reviewed studies published in English between 1 January 2000 and 15 June 2023 and used validated PROMs to predict readmission risks for adult populations. Reported studies were analysed and narratively synthesised in accordance with the CHARMS and PRISMA guidelines. Of the 2858 abstracts reviewed, 23 studies met predefined eligibility criteria, representing diverse geographic regions and medical specialties. Among those, 19 identified the positive contributions of PROMs in predicting readmission risks. Seven studies utilised generic PROMs exclusively, eleven used generic and condition-specific PROMs, while 5 focussed solely on condition-specific PROMs. Logistic regression was the most used modelling approach, with 13 studies aiming at predicting 30-day all-cause readmission risks. The c-statistic, ranging from 0.54 to 0.84, was reported in 22/23 studies as a measure of model discrimination. Nine studies reported model calibration in addition to c-statistic. Thirteen studies detailed their approaches to dealing with missing data. Our study highlights the potential of PROMs to enhance predictive accuracy in readmission models, while acknowledging the diversity in data collection methods, readmission definitions, and model evaluation approaches. Recognizing that PROMs serve various purposes beyond readmission reduction, our study supports routine data collection and strategic integration of PROMs in healthcare practices to improve patient outcomes. To facilitate comparative analysis and broaden the use of PROMs in the prediction framework, it is imperative to consider the methodological aspects involved.

Remote Symptom Monitoring Using Patient-Reported Outcomes in Patients With Chronic Kidney Disease: Process Evaluation of a Randomized Controlled Trial.

In Denmark, outpatient follow-up for patients with chronic kidney disease (CKD) is changing from in-hospital visits toward more remote health care delivery. The nonuse of remote patient-reported outcomes (PROs) is a well-known challenge, and it can be difficult to explain which mechanisms of interventions influence the outcome. Process evaluation may, therefore, be used to answer important questions on how and why interventions work, aiming to enhance the implications for clinical practice. This study aimed to provide insight into the intervention process by evaluating (1) the representativity of the study population, (2) patient and physician use patterns, (3) patient adherence to the intervention, and (4) clinical engagement. A process evaluation determining the reach, dose, fidelity, and clinical engagement was carried out, alongside a multicenter randomized controlled trial (RCT). We developed and implemented an intervention using PRO measures to monitor outpatients remotely. Data were collected for the PRO intervention arms in the RCT from 4 sources: (1) PRO data from the participants to determine personal factors, (2) the web-based PRO system to identify key usage intervention patterns, (3) medical records to identify clinical factors relating to the use of the intervention, and (4) semistructured interviews conducted with involved physicians. Of the 320 patients invited, 152 (47.5%) accepted to participate. The study population reflected the target population. The mean adherence rate to the PRO intervention arms was 82% (95% CI 76-87). The questionnaire response rate was 539/544 (99.1%). A minority of 13 (12.9%) of 101 patients needed assistance to complete study procedures. Physicians assessed 477/539 (88.5%) of the questionnaires. Contact was established in 417/539 (77.4%) of the cases, and 122/539 (22.6%) of the patients did not have contact. Physicians initiated 288/417 (69.1%) and patients requested 129/417 (30.9%) of all the contacts. The primary causes of contact were clinical data (242/417, 58%), PRO data (92/417, 22.1%), and medication concerns and precautionary reasons (83/417, 19.9%). Physicians found the use of PRO measures in remote follow-up beneficial for assessing the patient's health. The inclusion of self-reported clinical data in the questionnaire motivated physicians to assess patient responses. However, some barriers were emphasized, such as loss of a personal relationship with the patient and the risk of missing important symptoms in the absence of a face-to-face assessment. This study demonstrates the importance and practical use of remote monitoring among patients with CKD. Overall, the intervention was implemented as intended. We observed high patient adherence rates, and the physicians managed most questionnaires. Some physicians worried that distance from the patients made it unfeasible to use their "clinical glance," posing a potential risk of overlooking crucial patients' symptoms. These findings underscore key considerations for the implementation of remote follow-up. Introducing a hybrid approach combining remote and face-to-face consultations may address these concerns. ClinicalTrials.gov NCT03847766; https://clinicaltrials.gov/study/NCT03847766.

The role of patient-reported outcomes in peripheral nerve surgery.

Measuring the outcome of peripheral nerve surgery is challenging because of the spectrum of functional impairment is dependent on the level and severity of the lesion. There are no nerve-specific patient-reported outcome measures, and no universally accepted outcome measurement both in terms of the parameters to be assessed and the methods and timing of the assessment. Nevertheless, the use of patient-reported outcome measures is fundamental to better understand the needs and expectations of patients, to take advantage of all treatment opportunities to offer the best possible support to these patients. This paper outlines current concepts in the measurement of outcome in peripheral nerve surgery.

Patient-Reported Outcome and Experience Measures in Advanced Nursing Practice: What Are Key Considerations for Implementation and Optimized Use?

ObjectiveTo discuss the opportunities and challenges of implementing patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) within advanced practice nursing services in cancer care. MethodsThis discussion paper has been informed by an environmental scan of evidence from systematic reviews and primary studies evaluating the use and implementation of PROMs and PREMs. Literature from the contexts of cancer and chronic disease, including nursing and multidisciplinary supportive care literature, has been included. ResultsAdvanced practice nurses are well-positioned to evaluate and respond to PROMs and PREMs data; several studies have highlighted improved patient outcomes concerning quality of life, symptom distress, and functional status within nurse-led services. Nevertheless, the implementation of PROMs and PREMs in cancer care and nurse-led services is variable. Previous studies have highlighted implementation challenges, which can hinder comparability and generalizability of PROMs and PREMs instruments. Advanced practice nurses should consider these challenges, including ways to use standardized PROM instruments. Electronic PROMs, while efficient, may exclude individuals at risk of inequity. Complex, lengthy, and frequent administration of PROMs may also overburden people living with or after cancer, with people affected by cancer expressing preference for flexible use in some studies. Therefore, the involvement of people affected by cancer in planning for PROMs/PREMs implementation may overcome this challenge. Finally, organizational considerations in implementation should address financial investments, including initial costs for technology and training and consideration of the operationalization of PROMs within existing infrastructure for the seamless utilization of PROMs data. ConclusionDespite the potential of advanced practice nursing services to enhance patient-reported outcomes and experiences, variability in the implementation of PROMs and PREMs poses challenges. Use of validated measures, electronic or paper-based instruments, and the preferences of people affected by cancer for the use of PROMs and PREMs must be carefully considered in consultation with end users for successful implementation. Implications for PracticeIn planning for the implementation of PROMs and PREMs within nurse-led services, implementation risks may be mitigated through establishing clear guidelines for their use, investment in the development of the required infrastructure, user education, and rigorous implementation processes, including patient involvement in PROMs/PREMs selection.

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.

Opioid Use Disorder Treatment Prescribers’ Views of Implementing an Electronic System to Collect Patient-Reported Outcomes Measures

Use of patient-reported outcomes measures (PROMs) may improve addiction treatment outcomes. This qualitative study investigated barriers and facilitators for PROMs implementation among prescribers of medications for opioid use disorder (MOUD) participating in AMNet, an addiction medicine practice-based research network. Semi-structured interviews were conducted with seven qualitative research participants of 57 AMNet providers. Interview data were analyzed thematically and coded using ATLAS.ti. Barriers included lack of electronic health record (EHR) integration; user interface issues; insufficient administrative support; challenges with patient engagement; and lack of fit with clinical practice. Facilitators included perceptions that PROMs use would improve outcomes and increase accountability while advancing addiction medicine. Patient-reported outcomes measures implementation is feasible in small outpatient MOUD practices, although resource constraints and technological barriers may reduce potential reach.

The state of art on the use of patient reported outcomes in migraine.

This review aims to explore the use of patient-reported outcome measures (PROMs) in migraine. Traditionally assessed through specific features, recent adoption of PROMs allows for a more objective and quantifiable evaluation. PROMs, which are standardized questionnaires collecting health information directly from a patients' perspective, cover various aspects, including migraine specific aspects. The review focuses on delineating the applications and interpretation of commonly used PROMs in migraine research, with an emphasis on their integration in clinical care. Generic and migraine-specific PROMs play a crucial role in clinical research, particularly in assessing health-related quality of life, disability, impact, and associated comorbidities. Some of these measures are strongly recommended to be used by the International Guidelines and are, in fact, mandated by the FDA for product labeling. Recently, there has been an expansion in the use of PROMs to assess migraine in diverse populations, in particular pediatric patients. However, the application of these measures in clinical care shows considerable heterogeneity, and some have not been validated specifically for migraine. The existing multitude of PROMs, coupled with ongoing development of new ones to better capture patient concerns, creates complexity in their research and clinical application. To address these challenges, it becomes imperative to streamline their use, focusing on those that are more validated and better aligned with the patients' perspective including different populations' needs. The utilization of PROMs in evaluating migraine enables a more holistic assessment, helps quantify the impact of the disease facilitating change measurement, improves communication between healthcare providers and patients and, guides treatment decisions for improved outcomes. However, the increasing number of PROMs questionnaires, underscores the importance of validating these tools for migraine and, the dynamic nature of the disease makes it relevant to decide with whom, why and when these should be used.

Patient-reported outcome measures (PROMs) to personalise follow-up care of ovarian cancer: what do patients think? A qualitative interview study

PurposeThe purpose of this study was to explore ovarian cancer patients’ preferences regarding follow-up care and, in particular, the use of patient-reported outcome measures (PROMs) as an approach to personalise follow-up care.MethodsBetween May and June 2021, semi-structured interviews were conducted with ovarian cancer patients, who had finished their primary treatment at least 6 months prior and were receiving follow-up care at our centre. Interviews were transcribed verbatim and analysed using an inductive thematic approach. A thematic flow chart was created describing interacting themes.ResultsSeventeen patients were interviewed, of which 11 were familiar with PROMs. Two key themes emerged from the data: the need for reassurance and the wish for personalised care. A follow-up scheme using PROMs was identified as a separate theme with the potential to personalise care. Several barriers and facilitators of PROMs were mentioned.ConclusionsOvarian cancer patients have a desire for personalised follow-up care and seek reassurance. PROMs may be able to support both of these needs. Future research is needed to determine the most effective, patient-centred way to implement them.Implications for cancer survivorsBy understanding what patients’ preferences are regarding follow-up care, more initiatives can be set up to personalise follow-up care, through which patient anxiety and dissatisfaction can be reduced.

What patient-reported outcome measures may be suitable for research involving older adults with frailty? A scoping review.

The need to develop and evaluate frailty-related interventions is increasingly important, and inclusion of patient-reported outcomes is vital. Patient-reported outcomes can be defined as measures of health, quality of life or functional status reported directly by patients with no clinician interpretation. Numerous validated questionnaires can thus be considered patient-reported outcome measures (PROMs). This review aimed to identify existing PROMs currently used in quantitative research that may be suitable for older people with frailty. PubMed and Cochrane were searched up to 24/11/22. Inclusion criteria were quantitative studies, use of a PROM, and either measurement of frailty or inclusion of older adult participants. Criteria were created to distinguish PROMs from questionnaire-based clinical assessments. 197 papers were screened. PROMs were categorized according to the domain assessed, as derived from a published consensus 'Standard Set of Health Outcome Measures for Older People'. 88 studies were included. 112 unique PROMs were used 289 times, most frequently the SF-36 (n = 21), EQ-5D (n = 21) and Barthel Index (n = 14). The most frequently assessed outcome domains included Mood and Emotional Health and Activities of Daily Living, with fewer assessments of Participation in Decision-Making and Carer Burden. PROM usage in frailty research is highly heterogeneous. Frequently used PROMs omit important outcomes identified by older adults. Further research should evaluate the importance of specific outcomes and identify PROMs relevant to people at different stages of frailty. Consistent and appropriate PROM use in frailty research would facilitate more effective comparisons and meaningful evaluation of frailty interventions.

Phenomenology: A Method for the Interpretation of Patient-Reported Outcomes.

Patient-reported outcome measures (PROMs) play a central role in clinical research and patient care resulting in a plethora of standardized PROMs to measure a range of constructs, including disease symptoms, health-related quality of life, and health status (Meadows/Reaney) used in a range of settings, including the nursing environment. However, the use of PROMs in drug development and their use in healthcare evaluation do not easily marry together. In drug development, standardization of measurement is key to the interpretation of the formation at a population level with minimal biases. However, in health care, the individual patient perspective, priority, and needs should be taken into account whereas, in the clinical encounter, one has to also deal with what is particular and unique. The purpose of this paper is to describe the characteristics of the phenomenological method as a means within a mixed-method framework, to supplement participants' patient-reported outcome numeric scores with a more in-depth commentary on the essence of the lived health experiences.

Barriers to the Use of Patient-Reported Outcome Measures in Low- and Middle-income Countries.

Barriers to the Use of Patient-Reported Outcome Measures in Low- and Middle-income Countries.

Implications of Patient-Reported Outcome Measures among patients with recently diagnosed type 2 diabetes

BackgroundFor the past two decades, the assessment of the quality of diabetes care has mostly relied on clinical quality indicators. These have not included Patient-Reported Outcome Measures (PROMs) which provide information on outcomes deemed valuable by patients. We aimed to examine the potential utility of PROMs in type 2 diabetes care and to study the association of PROMs with patients' characteristics and clinical quality indicators.MethodsA cross-sectional survey of recently (≤ 4 years) diagnosed patients with type 2 diabetes (n = 392) in the setting of a large health plan. PROMs were based on two well-validated questionnaires, the Problem Areas in Diabetes (PAID) one-page questionnaire that measures diabetes-related distress, and the ten item PROMIS-10 global health questionnaire that measures general health. Additional items were added following a previous qualitative study among Israeli patients with diabetes. The survey was carried out using phone interviews, and data collected were linked to the electronic medical records. Multivariable regression models were used to assess the associations of socio-demographic variables and clinical quality indicators with the PROMs.ResultsAbout a fifth of participants (22%) had high diabetes-related distress (PAID score ≥ 40), a third reported that they did not feel confident in self-management of diabetes and about a third reported having sexual dysfunction. Women, younger patients, and those with a low education level (≤ 12 years) reported worse general health, were more likely to experience high diabetes-related distress, and to have low confidence in diabetes self-management. Interestingly, performance of all seven diabetes quality indicators was associated with worse general health and high diabetes-related distress. Of note, levels of glycated hemoglobin, LDL-cholesterol, or blood pressure were not associated with PROMs.ConclusionsPROMs provide important information on patient self-reported health status and are likely to reflect aspects of the quality of care that are not otherwise available to clinicians. Thus, the use of PROMs has the potential to expand the evaluation of diabetes care and promote patient-centered care. We recommend that policy-makers in the Ministry of Health and health maintenance organizations implement PROMs for assessing and improving the care for patients with type 2 diabetes.

Challenges in Selecting Patient-Reported Outcome Measures for Use in a Patient-Facing Technology.

Patient-reported outcome measures (PROMs) have been increasingly integrated into patient-facing technologies to engage and empower patients in cancer self-management at home. However, researchers and developers face several challenges in selecting the best-suited PROMs for patient-facing technologies, due to the complex nature of the disease, the multitude of PROMs with high psychometric quality, and the lack of clear standards for PROM utilization. In this paper, we have discussed these challenges, illustrated by breast cancer instruments.

Development and evaluation of a patient-reported outcome measure specific for Gaucher disease with or without neurological symptoms in Japan

BackgroundPatients with Gaucher disease (GD), a rare lysosomal storage disorder, have reduced health-related quality of life (HRQOL). A patient-reported outcome measure (PROM) for HRQOL developed for type 1 GD (GD1) is not appropriate for patients with neuronopathic GD (nGD) types 2 (GD2) and 3 (GD3). In this study, we developed a new PROM for use in all GD types. We previously reported the qualitative analysis of interviews with Japanese patients with nGD, which was used to create nGD-specific PROM items. Here we evaluated the full PROM combining the type 1 questionnaire with the new nGD-specific items.MethodsPatients with confirmed GD were recruited (Association of Gaucher Disease Patients in Japan or leading doctors) for pre-testing (May 2021) or the main survey (October–December 2021). The PROM had three parts: Parts 1 and 2 were translated into Japanese from the pre-existing GD1 PROM, whereas Part 3 was newly developed. Patients (or their caregivers, where necessary) completed the PROM questionnaire on paper and returned it by mail. Mean scores were determined overall and by GD type. Inter-item correlations, content consistency (Cronbach’s alpha), and test–retest reliability (Cohen’s kappa; main survey only, taken 2 weeks apart) were calculated.ResultsSixteen patients (three with GD1; six with GD2; seven with GD3) and 33 patients (nine with GD1; 13 with GD2; 11 with GD3) participated in the pre-test and main survey, respectively. All GD2 patients and one-third (6/18) of GD3 patients required caregivers to complete the questionnaire. Mean scores indicated that the burden was highest in GD2 and lowest in GD1. In the main survey, internal consistency was high (Cronbach’s alpha = 0.898 overall, 0.916 for Part 3), and test–retest reliability was high for Part 3 (kappa > 0.60 for 13/16 items) but low for Part 1 (kappa < 0.60 for 12/15 items).ConclusionsWe have developed a flexible and reliable PROM that can be tailored for use in all types of GD and propose using Parts 1 and 2 for GD1, Parts 2 and 3 for GD2, and Parts 1, 2, and 3 for GD3.

Patient reported outcomes in brachial plexus birth injury: results from the iPLUTO world‐wide consensus survey

Purpose Brachial plexus birth injuries (BPBI) can have lifelong effects on the development and functional use of the upper extremity. Currently there is no agreement with regards to what patient-reported outcome (PRO) measures should be used. Therefore, the ability to compare the effects of treatment between individuals and institutions is challenging. This study aimed to achieve consensus among clinicians on the use of PRO measures within this patient group to allow for improved comparison of treatments and outcomes in the future. Materials and Methods Online, a 3 round Delphi survey was completed by 35 international multi-disciplinary specialist centers. Results All respondents (100%) agreed that PRO measures are useful for clinical evaluation and patient treatment. None of the outcome measures scored >75% agreement for ability to assess responsiveness and current state in children with BPBI as most outcome measures were judged as not specific for BPBI. Additionally, participant centers were asked their perspective on the best available PRO option for each of the 3 categories: functional use of the upper limb, quality of life and pain. This resulted in endorsement by the participant centers of the Brachial Plexus Outcome Measure – Self-Evaluation, the Pediatric Quality of Life Inventory, and Visual Analogue Scale/Brief Pain Inventory respectively. Conclusion International specialists in BPBI agree that PRO measures are important to use both clinically and in research in children aged 5 years and above.

Practical Use of Patient-Reported Outcome Measures in Chronic Kidney Disease-Associated Pruritus

Regulatory and clinical stakeholders are increasingly advocating for the use of patient-reported outcome (PRO) measures; however, the use of PROs is still not widespread. Patient reports are often the best ways to diagnose and monitor the effect of treatment on symptoms when the symptoms are subjective, as with pruritus. While many PRO tools are available to assess the severity of pruritus and its impact on quality of life (e.g., sleep), these are not used in a consistent manner and their results may not translate into clinical action. In this article, we present an introduction to PROs and their use in the assessment of chronic kidney disease-associated pruritus, as well as a practical guide to some of the PRO tools currently available, to empower all members of the nephrology patient care team to use these tools appropriately for the benefit of the patient.

Assessing the content validity of the Manchester–Oxford Foot Questionnaire in surgically treated ankle fracture patients: a qualitative study

BackgroundRoughly 10% of fractures in adults are ankle fractures. These injuries are found in both sexes and present with different fracture characteristics. The treatment varies with the patients’ biology and fracture type, and the goals are to restore stability, prevent pain and maintain ankle function. Clinicians generally use outcomes like assessment of radiography, pain level, or function. The use of patient-reported outcome measures is increasing, and the Manchester–Oxford Foot Questionnaire (MOXFQ) has been shown to have good measurement properties when validated in patients with foot and ankle disorders. However, the instrument has not been validated for ankle fracture patients. This study aims to assess the content validity of the items in MOXFQ in surgically treated ankle fracture patients.MethodsA qualitative deductive design was used to investigate patients’ response process of the MOXFQ. Individual interviews were conducted using cognitive interviewing based on the theoretical framework of the 4-step model by Tourangeau. Adult patients that were surgically treated for an ankle fracture between four weeks and 18 months were purposively sampled, and interviews followed a semi-structured interview guide. The predetermined categories were comprehension, retrieval, judgement, and response.ResultsSeventeen respondents (65% females) were interviewed. Respondents’ age ranged from 27 to 76 years. Some of the respondents in the early recovery phase were limited by post-operative restrictions and did not find the items in the walking/standing domain relevant. Respondents that were allowed weight-bearing as tolerated (WBAT) were able to recall relevant information for most items. Respondents with time since surgery more than 12 months had less pain and remembered fewer relevant episodes in the recall period. Items in the social interaction domain contained ambiguous questions and were generally considered less important by respondents. The summary index score lacked important concepts in measuring overall quality of life.ConclusionsPain was a central concept in the post-operative recovery of ankle fracture patients. The MOXFQ-subscales for pain and walking/standing had acceptable content validity in patients that were allowed WBAT. The social interaction-subscale and the summary index score had insufficient content validity for this patient population.

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.