Electronic Patient-reported Outcome Measures Research Articles

Patient Voices: Multimethod Study on the Feasibility of Implementing Electronic Patient-Reported Outcome Measures in a Comprehensive Cancer Center.

"Patient Voices" is a software developed to promote the systematic collection of electronic patient-reported outcome measures (ePROMs) in routine oncology clinical practice. This study aimed to assess compliance with and feasibility of the Patient Voices ePROM system and analyze patient-related barriers in an Italian comprehensive cancer center. Consecutive patients with cancer attending 3 outpatient clinics and 3 inpatient wards were screened for eligibility (adults, native speakers, and being able to fill in the ePROMs) and enrolled in a quantitative and qualitative multimethod study. Compliance, reasons for not administering the ePROMs, patients' interaction needs, and patient-perceived System Usability Scale (range 0-100) were collected; semistructured interviews were carried out in a subsample of patients. From June 2020 to September 2021, a total of 435 patients were screened, 421 (96.7%) were eligible, and 309 completed the ePROMs (309/421, 73.4%; 95% CI 69.8%-77.5%; mean age 63.3, SD 13.7 years). Organization problems and patient refusal were the main reasons for not administering the ePROMs (outpatients: 40/234, 17.1% and inpatients: 44/201, 21.9%). Help for tablet use was needed by 27.8% (47/169) of outpatients and 10.7% (15/140) of inpatients, while the support received for item interpretation was similar in the 2 groups (outpatients: 36/169, 21.3% and inpatients: 26/140, 18.6%). Average System Usability Scale scores indicated high usability in both groups (outpatients: mean 86.8, SD 15.8 and inpatients: mean 83.9, SD 18.8). Overall, repeated measurement compliance was 76.9% (173/225; outpatients only). Interviewed patients showed positive attitudes toward ePROMs. However, there are barriers to implementation related to the time and cognitive effort required to complete the questionnaires. There is also skepticism about the usefulness of ePROMs in interactions with health care professionals. This study provides useful information for future ePROM implementation strategies, aimed at effectively supporting the routine clinical management and care of patients with cancer. In addition, these findings may be relevant to other organizations willing to systematically collect PROMs or ePROMs in their clinical routines. ClinicalTrials.gov NCT03968718; https://clinicaltrials.gov/study/NCT03968718.

Telehomecare Monitoring for Patients Receiving Anticancer Oral Therapy: Protocol for a Mixed Methods Evaluability Study.

Telehomecare monitoring (TM) in patients with cancer is a complex intervention. Research shows variations in the benefits and challenges TM brings to equitable access to care, the therapeutic relationship, self-management, and practice transformation. Further investigation into these variations factors will improve implementation processes and produce effective outcomes. This study aims to concurrently analyze implementation and evaluate the effectiveness of TM for patients receiving anticancer oral therapy. The objectives are to (1) contextualize how and why TM is implemented according to (a) site characteristics, (b) team characteristics, and (c) characteristics of patients receiving anticancer oral therapy; (2) assess TM effectiveness for recording electronic patient-reported outcome measures (ePROMs) and patient-reported experience measures (ePREMs) according to the site, implementation process, and patient characteristics; (3) describe the acceptability and feasibility of TM from the perspectives of the people directly or indirectly involved and provide evidence-based actionable guidance in anticipation of provincewide implementation. This type II hybrid effectiveness-implementation study uses a concurrent mixed methods design. Evaluability assessment is integrated into an emerging practice in 3 participating sites to enable the evaluation of implementation strategies on TM clinical outcomes. Quantitative data for ePROMs and ePREMs will be collected using validated oncology questionnaire. Descriptive statistics and repeated measures using multiple linear mixed models and generalized estimating equations analyses will be undertaken alongside interpretive descriptive coding of qualitative data. Qualitative data will be gathered from key informants guided by the RE-AIM (reach, efficacy, adoption, implementation, maintenance) framework and its extension, PRISM (practical robust implementation and sustainability model). The concurrent approach allows results at multiple stages of this study to be integrated iteratively. The methodological choice aims to provide real-world data that are rigorous, rapidly usable in practice, and transferable to other settings. Questionnaires were pretested and the technological platform was codeveloped with members of the cancer care team and patients. Preparatory work was carried out to configure the TM platform and activate coordinating mechanisms between members of the cancer care team, patients, information technology experts, and the research team. A steering committee with 3 working groups was established to oversee the technological, clinical, and evaluation aspects of this study. Recruitment of patients for ePROMs started in February 2024, and data collection is expected to continue until March 2025. Interviews with members of the cancer care team began in November 2024. Full analysis should be completed by September 2025. This study will clarify how, why, for whom, and under what conditions TM can complement current care models. Our evaluability assessment will help to address implementation complexities and better understand intervention-to-practice operationalization so that implementation might be adapted to contextual factors without potentially harmful or inequitable impacts on patients. DERR1-10.2196/63099.

First-time use of electronic patient-reported outcome measures in a cluster randomized trial: a qualitative study

BackgroundAlthough there is clear evidence supporting the beneficial effects of regularly assessing patient-reported outcomes (PROs), the comprehensive integration of patient-reported outcome measures (PROMs) into routine cancer care remains limited. This study aimed to explore the facilitators and barriers encountered by principal investigators (PIs) (oncologists) and study nurses during the implementation of the Eir ePROM within a cluster randomized trial (c-RCT) in cancer outpatient clinics. Additionally, we sought to examine the influence of Eir on the working routines of the participants.MethodsIndividual semi-structured interviews and a focus group were conducted with nine oncologists and study nurses involved in the implementation of the ePROM tool Eir. Interviews elucidated their experiences of barriers and facilitators when implementing Eir through a cluster randomized trial. Data were analysed according to Framework Analysis, using both an inductive and deductive approach. The Consolidated Framework for Implementation Research (CFIR) was used in the deductive stages of analysis.ResultsThree overarching themes were identified from the data: (1) Willingness to invest; accepting that new eras come with a cost, (2) Management anchoring; changes start at the top, and (3) Creation of a cohesive framework; fostering collective comprehension. We found a notable disparity between oncologists and nurses in their willingness to invest time and effort in implementing the tool. While participants recognized the need to transform patient consultation methods to benefit from digital symptom management, opinions varied on whether the potential benefits justified the associated cost. Furthermore, the degree of management anchoring at various levels significantly impacted the implementation process. At the local level, it was seen as either a facilitator or a barrier, influencing the outcome of the implementation. Additionally, establishing a cohesive framework was crucial, as this fostered a collective understanding among those involved in the implementation.ConclusionsOur study underscores the importance of considering the diverse perspectives of health care professionals and fostering interprofessional collaboration for the successful implementation of ePROMs in healthcare settings. Future research should explore strategies to bridge professional disparities and promote a shared understanding of the value provided by ePROMs.

Using an electronic patient reported outcome measure (ePAQ-MPH) to assess potential harm for long-waiting patients in gynaecology

BackgroundDuring the COVID-19 pandemic, outpatient waits for gynaecology appointments increased by 60% in the UK National Health Service (NHS). The aim of this study was to use the electronic Personal Assessment Questionnaire-Menstrual, Pain and Hormonal (ePAQ-MPH) electronic patient reported outcome measure (ePROM) to assess symptoms, impact and potential harm for patients waiting > 60 weeks for general gynaecology appointments at a teaching hospital.Methods1070 patients waiting > 60 weeks for a new appointment (range 60–72 weeks) were invited to complete ePAQ-MPH online to measure gynaecological symptoms and health-related quality-of-life (HRQoL). Patients could also call to cancel appointments no longer needed. Non-responders were telephoned weekly for three further weeks and asked to complete ePAQ-MPH. Patients scoring > 80/100 for ePAQ-MPH domains relating to HRQoL had their appointment escalated to be seen within six-eight weeks. Thematic content analysis was undertaken of free-text concerns recorded using ePAQ-MPH.Results526 patients completed ePAQ-MPH (49.2%), 169 of these scored greater than 80/100 for one or more HRQoL domains and were seen within 6–8 weeks. 103 patients (9.6%) requested to cancel their appointment. Reasons included problem resolving spontaneously (33%), problem treated by general practitioner (10%) and being seen by a private provider (28%). Commonly recorded free-text concerns related to wanting a diagnosis (n = 142), management of condition (n = 98) and pain management (n = 77).ConclusionsePAQ-MPH may be used effectively to prioritise patients waiting for an outpatient appointment in gynaecology. Wider use of ePROMs to support waiting list validation within the NHS and elsewhere should be considered.

Assessing usability of electronic patient-reported outcome measures in older people with and without a rare dermatologic disorder

BackgroundRobust and well-defined data collection is important when using electronic patient-reported outcome measures (ePROMs) in clinical studies. Questions have been raised as to whether older age may be a barrier to data collection due to patients’ unfamiliarity with electronic devices. Older adults may also have underlying health conditions that affect their ability to fill out patient-reported outcome measures (PROMs) on electronic devices. The aim of this observational, qualitative research study was to evaluate the usability of electronic PROMs (ePROMs) on a tablet and smartphone in older participants with and without bullous pemphigoid (BP).MethodsOlder people with and without BP were recruited in the US and France. They participated in 60-min in-person interviews, with moderators observing their completion of various tasks, including ePROMs, using a tablet and smartphone. Participants were scored on ease of task completion using a scale from 1 to 5.ResultsA total of 12 participants were recruited (≥65 years old; six each with and without BP [all participants without BP were ≥75 years old]). Most participants (83%) could easily and confidently perform most assigned tasks on both the tablet and smartphone. Although select tasks required assistance, all participants were eventually able to complete all tasks. Overall, ePROM usability did not correlate with age, sex, country, or disease state. Feedback on the general usability of both electronic devices was largely positive, and most participants (n = 11; 92%) were willing to use them. Participants were generally pleased with the training modules offered on both devices, describing the training as sufficient, straightforward, and helpful. In total, 25 usability issues were identified, which fell into three categories: incomplete instructions, unclear language, and insufficient technical/visual design. Participants provided feedback on how to enhance device usability.ConclusionsThe results suggest that older people can confidently use a tablet or smartphone for ePROM completion, particularly with appropriate training. ePROMs should be designed with the needs of the target patient population in mind. These results can be leveraged to improve clinical data recording, optimize device usability, and enhance the user experience for older people and those with functional or physical limitations.Graphical abstract

Completion Rate of Paper-Based and Electronic Patient Reported Outcome Measures in a Multidisciplinary Cancer Survivorship Clinical Setting.

Integrating Patient-Reported Outcome Measures (PROMs) into clinical practice is increasing, with research showing benefits in patient outcomes. However, evidence regarding patient's acceptance of PROMs is limited. Sydney Cancer Survivorship Centre (SCSC) clinic is a multidisciplinary clinic where clinicians use PROMs to guide patient consultation. This study explored SCSC patient acceptability of PROMs in clinical care by evaluating PROMs' completion rates. This retrospective audit of PROMs completion rates evaluates two periods: 1) September 2013-November 2019 (pre-coronavirus disease 2019) and 2) October 2020-September 2023, following the implementation of electronic PROMs. Overall, 866 new patients attended SCSC during the two audit periods, with 822 (95%) giving consent for data to be included. Descriptive statistical methods were used to analyse completion rates. Between September 2013 and November 2019 (audit period 1), 656 new survivors attended the SCSC clinic; 622 (95%) consented to data use. The highest completion rate for paper-based PROMs was the food questionnaire (92%); with 91% for distress thermometer, symptoms, and exercise-related PROMs; 85% for quality of life; 77% for self-rated performance status, and 55.5% for a 3-day food diary. From October 2020 to September 2023 (period 2), the response rate for PROMs was 99% (n = 198/200) for initial clinic attendees; and 92% for electronic PROMs (n = 169/184). Using comprehensive PROMs in clinical care is feasible. The completion rate was high; similar between paper-based and electronic PROMs. Comprehensive PROMs can guide clinical consultations. PROMs may improve communication between survivors and clinicians and enhance the quality of care.

Postimplementation Evaluation in Assisted Living Facilities of an eHealth Medical Device Developed to Predict and Avoid Unplanned Hospitalizations: Pragmatic Trial.

The proportion of very old adults in the population is increasing, representing a significant challenge. Due to their vulnerability, there is a higher frequency of unplanned hospitalizations in this population, leading to adverse events. Digital tools based on artificial intelligence (AI) can help to identify early signs of vulnerability and unfavorable health events and can contribute to earlier and optimized management. This study aims to report the implementation in assisted living facilities of an innovative monitoring system (Presage Care) for predicting the short-term risk of emergency hospitalization. We describe its use and assess its performance. An uncontrolled multicenter intervention study was conducted between March and August 2022 in 7 assisted living facilities in France that house very old and vulnerable adults. The monitoring system was set up to provide alerts in cases of a high risk of emergency hospitalization. Nurse assistants (NAs) at the assisted living facilities used a smartphone app to complete a questionnaire on the functional status of the patients, comprising electronic patient-reported outcome measures (ePROMs); these were analyzed in real time by a previously designed machine learning algorithm. This remote monitoring of patients using ePROMs allowed notification of a coordinating nurse or a coordinating NA who subsequently informed the patient's nurses or physician. The primary outcomes were the acceptability and feasibility of the monitoring system in the context and confirmation of the effectiveness and efficiency of AI in risk prevention and detection in practical, real-life scenarios. The secondary outcome was the hospitalization rate after alert-triggered interventions. In this study, 118 of 194 (61%) eligible patients were included who had at least 1 follow-up visit. A total of 38 emergency hospitalizations were documented. The system generated 92 alerts for 47 of the 118 (40%) patients. Of these 92 alerts, 46 (50%) led to 46 health care interventions for 14 of the 118 (12%) patients and resulted in 4 hospitalizations. The other 46 of the 92 (50%) alerts did not trigger a health care intervention and resulted in 25 hospitalizations (P<.001). Almost all hospitalizations were associated with a lack of alert-triggered interventions (P<.001). System performance to predict hospitalization had a high specificity (96%) and negative predictive value (99.4%). The Presage Care system has been implemented with success in assisted living facilities. It was well accepted by coordinating nurses and performed well in predicting emergency hospitalizations. However, its use by NAs was less than expected. Overall, the system performed well in terms of performance and clinical impact in this setting. Nevertheless, further work is needed to improve the moderate use rate by NAs. ClinicalTrials.gov NCT05221697; https://clinicaltrials.gov/study/NCT05221697.

Patient and Staff Experiences of Embedding Electronic Patient Reported Outcome Measures for Distress Screening and Quality of Life Assessment, Into Routine Melanoma Care: A Mixed-Methods Study.

Patient reported outcome measures (PROMs) are commonly collected in melanoma research. However, they are not used to guide immediate clinical care in Australia. This study explored the views and experiences of patients with Stage III melanoma and clinic staff during implementation of an electronic Patient-Reported Outcome Measures in melanoma (ePROMs-MEL) pilot to assess distress and quality of life. A prospective mixed-methods study in specialist melanoma clinics in Sydney, Australia between May 2021 and February 2023. Forty-two post-ePROMs implementation surveys and 17 semi-structured interviews were undertaken among patients and staff (including oncologists, melanoma nurses and clinic managers). Survey responses were tabulated using Likert scales and interview transcripts analysed thematically. Of the 31 patient survey responses, over 90% reported ePROMs were easy to complete and measured important components of their health and wellbeing. Of the 11 staff surveys, over 50% reported ePROMs to be useful when allied health referrals were accessible but found implementation disruptive to clinic workflows. Six themes about ePROMs in clinical care emerged during data analysis: (1) promoting self-reflection; (2) conversation-starters; (3) timing and setting; (4) fit for purpose questionnaires; (5) resource issues; (6) value and limitations of ePROMs. Patients overwhelmingly supported the real-time collection of ePROMs for their immediate care. In contrast, staff support was conditional on resources to maximise clinical care efficiency and minimise administrative burden. Australia and New Zealand Clinical Trials Registry: anzctr.org.au/ACTRN12620001149954.aspx.

Development, Validation, and Clinical Utility of Electronic Patient-Reported Outcome Measure-Enhanced Prediction Models for Overall Survival in Patients With Advanced Non-Small Cell Lung Cancer Receiving Immunotherapy.

Electronic patient-reported outcome measures (ePROMs) are increasingly collected routinely in clinical practice and may be prognostic for survival in adults with advanced non-small cell lung cancer (NSCLC) in addition to clinical data. This study developed ePROM-enhanced models for predicting 1-year overall survival in patients with advanced NSCLC at the start of immunotherapy. This is a single-center study using consecutive patients from a tertiary cancer hospital in England. Using Cox proportional hazards models, we developed one clinical factor-only model and three ePROM-enhanced models, each including one of the following factors: quality of life (as measured by EuroQoL five-dimension five-level utility score) and overall symptom burden and number of moderate-to-severe symptoms (as measured by patient-reported version of Common Terminology Criteria for Adverse Events). Predictive performance was evaluated and compared through bootstrapping internal validation, and clinical utility was determined via decision curve analysis. The clinical factor-only model contained age, histology, performance status, and neutrophile-to-lymphocyte ratio. While calibration was similar between the clinical factor-only and ePROM-enhanced models, the latter showed improved discrimination by 0.020 (95% CI, 0.011 to 0.024), 0.024 (95% CI, 0.016 to 0.031), and 0.024 (95% CI, 0.014 to 0.029) when enhanced with ePROMs on quality of life, overall symptom burden, and number of moderate-to-severe symptoms, respectively. If care decisions are to be made at risk thresholds between 25% and 75%, the ePROM-enhanced models led to higher net benefit than the clinical factor-only model and the default strategies of intervention for all and intervention for none. The ePROM-enhanced models outperformed the clinical factor-only model in predicting 1-year overall survival for patients with advanced NSCLC receiving immunotherapy and showed potential clinical utility for informing decisions in this population. Future studies should focus on validating the models in external data sets.

PRO-P: evaluating the effect of electronic patient-reported outcome measures monitoring compared with standard care in prostate cancer patients undergoing surgery—study protocol for a randomized controlled trial

BackgroundWith over 65,000 new cases per year in Germany, prostate cancer (PC) is the most common cancer in men in Germany. Localized PC is often treated by radical prostatectomy and has a very good prognosis. Postoperative quality of life (QoL) is significantly influenced by the side effects of surgery. One possible approach to improve QoL is postoperative symptom monitoring using ePROMs (electronic patient-reported outcome measures) to accurately identify any need for support.MethodsThe PRO-P (“Influence of ePROMS in surgical therapy of PC on the postoperative course”) study is a randomized controlled trial employing 1:1 randomization at 6 weeks postoperatively, involving 260 patients with incontinence (≥ 1 pad/day) at six participating centers. Recruitment is planned for 1 year with subsequent 1-year follow-up. PRO-monitoring using domains of EPIC-26, psychological burden, and QoL are assessed 6, 12, 18, 24, 36, and 52 weeks postoperatively. Exceeding predefined PRO-score cutoffs triggers an alert at the center, prompting patient contact, medical consultation, and potential interventions. The primary endpoint is urinary continence. Secondary endpoints refer to EPIC-26 domains, psychological distress, and QoL. Aspects of feasibility, effect, and implementation of the intervention will be investigated within the framework of a qualitative process evaluation.DiscussionPRO-P investigates the effect on postoperative symptom monitoring of a structured follow-up using ePROMs in the first year after prostatectomy. It is one of the first studies in cancer surgery investigating PRO-monitoring and its putative applicability to routine care. Patient experiences with intensified monitoring of postoperative symptoms and reflective counseling will be examined in order to improve primarily urinary continence, and secondly other burdens of physical and psychological symptoms, quality-of-life, and patient competence. The potential applicability of the intervention in clinical practice is facilitated by IT adaption to the certification standards of the German Cancer Society and the integration of the ePROMs survey via a joint patient portal. Positive outcomes could readily translate this complex intervention into routine clinical care. PRO-P might improve urinary incontinence and QoL in patients with radical prostatectomy through the structured use of ePROMs.Trial registrationClinicalTrials.gov NCT05644821. Registered on 09 December 2022.

Electronic Patient Reported Outcome Measures after palliative radiotherapy: evaluation of implementation.

Radiotherapy is a frequently utilized palliative treatment for cancer patients. Electronic Patient-Reported Outcome Measures (ePROMs) offer a method for patients to communicate their symptoms and concerns to healthcare providers (HCPs) remotely. While ePROMs have demonstrated significant benefits for oncology patient care, their integration into routine clinical practice of palliative radiotherapy (PRT) poses challenges. The current study aimed to evaluate the implementation of an ePROM-intervention after PRT. We conducted a two-phase study to evaluate the implementation of a self-developed ePROM intervention, known as the ePRomT diary, for symptom monitoring post-PRT. This diary offered automated self-management advice for mild symptoms and also guided patients to contact an HCP for severe symptoms. We assessed various implementation aspects using the RE-AIM framework and collected data through surveys, interviews, electronic health records, and field notes. Quantitative data analysis employed descriptive statistics, while qualitative data underwent thematic analysis using NVivo. Recruitment periods for both phases spanned 10 weeks. In Phase I, 37 out of 87 eligible patients (43%) participated, a number that rose to 40 out of 49 eligible patients (82%) in Phase II. Among participating patients, 93% in Phase I and 98% in Phase II reported the ePRomT diary as a valuable addition to their care. Additionally, 75% and 84% expressed willingness to reuse it, while 70% and 80% would recommend it to others in Phases I and II, respectively. In Phase I, 17 out of 39 patients (44%) completed at least one ePROM assessment, increasing to 26 out of 40 patients (65%) in Phase II. While patients found the self-management advice generally correct and relevant, they noted its somewhat generic nature. Moreover, while the advice to contact an HCP was deemed appropriate, adherence to it varied. HCPs expressed satisfaction with the intervention, deeming it valuable in patient care, and believed that integrating it into routine clinical practice would enhance patient acceptability with minimal workflow disruptions. Despite certain limitations, including participant bias, our study offers valuable insights into the implementation and potential implications of an ePROM intervention for symptom follow-up post-PRT, framed within the RE-AIM framework. ePROM interventions like the ePRomT diary show promise and are well-received by both patients and HCPs. However, optimizing such interventions to better align with patient needs and seamlessly integrating them into clinical workflows within the context of PRT warrants further investigation.

Patient-reported outcome measure (PROM) programs for monitoring symptoms among patients treated with immunotherapy: a scoping review.

Monitoring toxicities among patients receiving immune checkpoint inhibitors using patient-reported outcome measures (PROMs) is relatively recent. This scoping review aims to guide decision making in the development of PROMs programs for patients receiving immune checkpoint inhibitor therapy. Four electronic databases were searched from inception to January 2024. Data on PROM programs for patients receiving immune checkpoint inhibitors (eg, PROMs used, frequency) were extracted. Two authors with established interrater reliability screened titles, abstracts, and full texts. A narrative synthesis identified patterns in the data. A total of 22 articles described 16 unique multicomponent, electronic PROM programs for patients receiving immune checkpoint inhibitor therapy, mainly developed for remote monitoring of toxicities between appointments. Patients typically completed 18-26 items from the Patient-Reported Outcomes Common Terminology Criteria for Adverse Events (PRO-CTCAE) or Common Terminology Criteria for Adverse Events (CTCAE) weekly, with high adherence and satisfaction. Commonly monitored symptoms were diarrhea, fatigue, shortness of breath, cough, nausea, decreased appetite, rash, joint pain, pain, and mood. Other features of PROMs programs included clinician alerts, with some programs only flagging symptoms that had an impact on treatment. Some programs also or only sent alerts to patients to contact their clinicians and gave access to symptom management information. In terms of efficacy, the only consistent finding was an increase in quality of life. The findings of this scoping review provide some indication as to which components of a PROM program are promising. However, as the evidence base for using PROMs among patients receiving immune checkpoint inhibitors is growing, many questions remain, including which symptoms to monitor, using which PROM, and at what frequency. More trials are needed to answer these questions and to determine how best to implement PROMs among patients receiving immune checkpoint inhibitor in clinical practice.

Empowered or challenged? The dual impact of condition-specific electronic Patient-Reported Outcome Measures in the person-centred care of women with breast cancer: A qualitative study

PurposeThis study aimed to investigate patients' experiences with electronic Patient-Reported Outcome Measures (ePROMs) during follow-up consultations with registered nurses and surgeons in breast cancer care. MethodsA qualitative approach was employed, using focused ethnography with participant observations during patient consultations at a Plastic and Breast Surgery outpatient clinic, followed by individual interviews with the patients. Data were analysed using reflexive thematic analysis by Braun and Clarke. The discussion was informed by theory on person-centred practice. ResultsA total of 38 participants were included. ePROMs strengthened person-centred practice by nudging patients to reflect on their health, voice their concerns and engage in active dialogue during consultations, particularly regarding body image issues. The relevance and impact of ePROMs were highly dependent on the timing of the patient's treatment trajectory. Patients found that ePROMs were more meaningful and contextually appropriate when completed during late follow-up. This could be because patients faced challenges with ePROMs, including not understanding their purpose, the need for assistance from relatives and instances when ePROMs were not integrated into consultations. ConclusionePROMs can empower patients by facilitating meaningful discussions about body image and other concerns during postoperative follow-up consultations. However, their effectiveness relies on clear communication and proper integration into clinical practice. The results add to existing litterature by highlighting the dual impact of ePROMs, as they can enhance patient-centred care but also present challenges when their purpose is unclear. The implications for future practice include the need to develop strategies that engage diverse patient groups in the ePROM process, supporting equal access to follow-up care and addressing health disparities.

Enhancing Clinicians' Use of Electronic Patient-Reported Outcome Measures in Outpatient Care: Mixed Methods Study.

Despite the increasing use of patient-reported outcome measures (PROMs) for collecting self-reported data among hospital outpatients, clinicians' use of these data remains suboptimal. Insight into this issue and strategies to enhance the use of PROMs are critical but limited. This study aimed to examine clinicians' use of PROM data for value-based outpatient consultations and identify efforts to enhance their use of PROMs in a Dutch university hospital. First, we aimed to investigate clinicians' use of outpatients' PROM data in 2023, focusing on adoption, implementation, and maintenance. Second, we aimed to develop insights into the organizational-level strategies implemented to enhance clinicians' use of PROM data from 2020 to 2023. This included understanding the underlying rationales for these strategies and identifying strategies that appeared to be missing to address barriers or leverage facilitators. Third, we aimed to explore the key factors driving and constraining clinicians' use of PROMs in 2023. We integrated data from 4 sources: 1-year performance data on clinicians' use of PROMs (n=70 subdepartments), internal hospital documents from a central support team (n=56), a survey among clinicians (n=47), and interviews with individuals contributing to the organizational-level implementation of PROMs (n=20). The Reach, Effectiveness, Adoption, Implementation, and Maintenance framework was used to analyze clinicians' adoption, implementation, and maintenance of PROMs. Strategies were analyzed using the Expert Recommendations for Implementing Change taxonomy, and results were structured around the constructs of capability, opportunity, and motivation. On average, around 2023, clinicians accessed PROM data for approximately 3 of 20 (14%) patients during their outpatient consultation, despite numerous strategies to improve this practice. We identified issues in adoption, implementation, and maintenance. The hospital's strategies, shaped organically and pragmatically, were related to 27 (37%) out of 73 Expert Recommendations for Implementing Change strategies. These strategies focused on enhancing clinicians' capability, opportunity, and motivation. We found shortcomings in the quality of execution and completeness of strategies in relation to addressing all barriers and leveraging facilitators. We identified variations in the factors influencing the use of PROMs among frequent PROM users, occasional users, and nonusers. Challenges to effective facilitation were apparent, with certain desired strategies being unfeasible or impeded. Enhancing clinicians' use of PROMs has remained challenging despite various strategies aimed at improving their capability, opportunity, and motivation. The use of PROMs may require more substantial changes than initially expected, necessitating a shift in clinicians' professional attitudes and practices. Hospitals can facilitate rather than manage clinicians' genuine use of PROMs. They must prioritize efforts to engage clinicians with PROMs for value-based outpatient care. Specific attention to their professionalization may be warranted. Tailored strategies, designed to address within-group differences in clinicians' needs and motivation, hold promise for future efforts.

Measurement Equivalence and Feasibility of the Electronic and Paper Versions of the POSAS, EQ-5D, and DLQI: A Randomized Crossover Trial.

Patient-reported outcome measures (PROMs) are crucial within person-centered care. The use of electronic PROMs (ePROMs) is increasing and multiple advantages have been described. The Patient and Observer Scar Assessment Scale (POSAS) is a validated paper questionnaire to assess patient-reported scar quality in the burn and scar population. In burn and scar rehabilitation, quality of life questionnaires such as the Euroqol 5 Dimensions 5 level (EQ-5D-5L) and the Dermatology Life Quality Index (DLQI) allow us to measure physical and psychosocial impact. The goal of this research was to compare the equivalence of the electronic versions of the POSAS, the EQ-5D-5L, and the DLQI with their original paper counterparts. To ensure the psychometric properties of the electronic versions, we assessed the equivalence of scores, the differences in completion time, and patients' preferred mode and ease of use. We used a randomized crossover design using a within-subject comparison of the formats of the questionnaires. Participants aged over 18 with a scar were recruited from an outpatient after-care and research center for burns and scars in Antwerp, Belgium. The equivalence of the electronic questionnaires POSAS, EQ-5D-5L, and DLQI is assumed based on the findings of this study. Completion times were faster for all the electronic versions but only statistically different (p = 0.002) for the electronic version of the EQ-5D-5L. The number of missing answers could be reduced to 0. The electronic assessment was preferred in >75% of the cases and subjects found it easy to use, and a tool that could improve the quality of care. Our findings support the electronic delivery of POSAS, EQ-5D, and DLQI, within the burn and scar population.

Advancing patient-centered cancer care: a systematic review of electronic patient-reported outcome measures.

Electronic Patient-Reported Outcome Measures (ePROMs) have emerged as valuable tools in cancer care, facilitating the comprehensive assessment of patients' physical, psychological, and social well-being. This study synthesizes literature on the utilization of ePROMs in oncology, highlighting the diverse array of measurement instruments and questionnaires employed in cancer patient assessments. By comprehensively analyzing existing research, this study provides insights into the landscape of ePROMs, informs future research directions, and aims to optimize patient-centred oncology care through the strategic integration of ePROMs into clinical practice. A systematic review was conducted by searching peer-reviewed articles published in academic journals without time limitations up to 2024. The search was performed across multiple electronic databases, including PubMed, Scopus, and Web of Science, using predefined search terms related to cancer, measurement instruments, and patient assessment. The selected articles underwent a rigorous quality assessment using the Mixed Methods Appraisal Tool (MMAT). The review of 85 studies revealed a diverse range of measurement instruments and questionnaires utilized in cancer patient assessments. Prominent instruments such as the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) and the Patient Reported Outcome-Common Terminology Criteria for Adverse Events (PRO-CTCAE) were frequently referenced across multiple studies. Additionally, other instruments identified included generic health-related quality of life measures and disease-specific assessments tailored to particular cancer types. The findings indicated the importance of utilizing a variety of measurement tools to comprehensively assess the multifaceted needs and experiences of cancer patients. Our systematic review provides a comprehensive examination of the varied tools and ePROMs employed in cancer care, accentuating the perpetual requirement for development and validation. Prominent instruments like the EORTC QLQ-C30 and PRO-CTCAE are underscored, emphasizing the necessity for a thorough assessment to meet the multifaceted needs of patients. Looking ahead, scholarly endeavours should prioritize the enhancement of existing tools and the creation of novel measures to adeptly address the evolving demands of cancer patients across heterogeneous settings and populations.

Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review.

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care.

User-Centered Design and Usability of Voxe as a Pediatric Electronic Patient-Reported Outcome Measure Platform: Mixed Methods Evaluation Study.

Electronic patient-reported outcome measures (ePROMs) are standardized digital instruments integrated into clinical care to collect subjective data regarding patients' health-related quality of life, functional status, and symptoms. In documenting patient-reported progress, ePROMs can guide treatment decisions and encourage measurement-based care practices. Voxe is a pediatric and user-centered ePROM platform for patients with chronic health conditions. We aimed to describe the user-centered design approach involving feedback from end users and usability testing of Voxe's platform features to support implementation in a pediatric health care setting. Purposive sampling was used to recruit patients aged 8-17 years from 2 chronic illness populations in 2 pediatric hospitals in Canada. Patients' health care team members were also purposively recruited. One-on-one iterative testing sessions were conducted digitally by research team members with participants to obtain feedback on the appearance and functionalities of the Voxe platform prototype. Patients and health care providers (HCPs) completed Voxe-related task-based activities. International Organization for Standardization key performance indicators were tracked during HCP task-based activities. HCPs also completed the System Usability Scale. To test platform usability, the think-aloud technique was used by participants during the completion of structured tasks. After completing all task-based activities, patient participants selected 5 words from the Microsoft Desirability Toolkit to describe their overall impression and experience with the Voxe platform. Qualitative data about likes, dislikes, and ease of use were collected through semistructured interviews. Feedback testing sessions were conducted with patients and HCPs until Voxe was acceptable to participating end users, with no further refinements identified. Quantitative and qualitative data analysis were completed using descriptive statistics and content analysis. A total of 49 patients and 38 HCPs were recruited. Patients were positive about Voxe's child-centered design characteristics and notification settings. HCPs rated Voxe as user-friendly and efficient, with the time to complete tasks decreasing over time. HCPs were satisfied with the Voxe platform functionalities and identified the value of Voxe's system notifications, summarized display of ePROM results, and its capacity to integrate with electronic medical records. Patients' and HCPs' high satisfaction rates with the Voxe prototype highlight the importance of being responsive to user suggestions from the inception of eHealth platform developments to ensure their efficient and effective design. This paper describes the user-centered creation and usability testing of Voxe as an ePROM platform for implementation into clinical care for pediatric patients with chronic health conditions. As a patient-facing platform that can be integrated into electronic medical records, Voxe aligns with measurement-based care practices to foster quality patient-centered approaches to care. End users' positive feedback and evaluation of the platform's user-friendliness and efficiency suggest that Voxe represents a valuable and promising solution to systematically integrate patient-related outcome (PRO) data into complex and dynamic clinical health care settings. RR2-10.1136/bmjopen-2021-053119.

The evaluation of daily activity questionnaire for stroke survivors: cross-cultural adaptation, content validity and digitisation

ObjectiveThe study's objective was to culturally adapt and digitise the Evaluation of Daily Activity Questionnaire (EDAQ), originally designed for rheumatoid arthritis and various other musculoskeletal conditions, creating a version for stroke survivors (EDAQ-SS). This adaptation also aimed to develop a comprehensive electronic Patient Reported Outcome Measure (ePROM) intended to refine stroke survivors' self-assessment of their daily activity limitations. Materials and methodsCross-cultural adaptation of the EDAQ was completed by a review of expert panel, which included healthcare professionals to increase the clarity and relevancy of the items, followed by cognitive debriefing interviews with British stroke survivors to rate their understanding of the questionnaire items. After developing the paper version of the questionnaire, this was digitised (eEDAQ-SS) and disseminated online via the Stroke Survivors Hub (SSHUB). Content validity of the EDAQ-SS was evaluated using the International Classification of Functioning (ICF) Core Set for Stroke. ResultsThe expert panel meeting (n:11) and cognitive debriefing interviews with stroke survivors (n:10) resulted in an EDAQ-SS with 160 items across 15 domains, which was understandable and relevant to stroke survivors. The SSHUB was deemed to be a user-friendly platform, providing easy access to eEDAQ-SS and aid self-assessment of daily activities of stroke survivors. Mapping the EDAQ-SS items to the ICF Core Set for Stroke demonstrated good content validity with 44/55 matching categories. ConclusionThe EDAQ-SS offers a comprehensive measure for self-assessment, which may serve to guide stroke survivors’ self-management by overcoming limitations of existing PROMs. Further psychometric testing of the EDAQ-SS and wider testing of the digital version is recommended. Contribution of the Paper•The Evaluation of daily activity questionnaire for stroke survivors (EDAQ-SS) is a culturally adapted, comprehensive PROM for British stroke survivors, enhancing self-assessment of daily activities.•Methodically developed using guidelines, expert feedback, and stroke survivor interviews, the EDAQ-SS ensures relevance and clarity.•The EDAQ-SS demonstrates good content validity against the International Classification of Functioning Core Set for Stroke, with potential to improve clinical practice by providing a detailed, sensitive measure to help stroke survivors and healthcare professionals identify and manage daily activity limitations more effectively.

51960 Utility of electronic patient reported outcome measures (ePROMs) in triaging and flexible scheduling – A scoping review

51960 Utility of electronic patient reported outcome measures (ePROMs) in triaging and flexible scheduling – A scoping review