Electronic Patient-reported Outcome Measures Research Articles

Navigating cancer care through digital dialogue: Analyzing key phrases shared by patients in real-time exchange messages using an electronic patient-reported outcome measure (ePROM).

e13661 Background: Cancer is a complex ailment, giving rise to a myriad of symptoms, side effects, and questions that may arise unexpectedly. There is a growing interest in adopting more efficient approaches for the continuous monitoring of patients, particularly through virtual platforms. This study focuses on analyzing the word frequency in the context of cancer assistance using an ePROM. Methods: We conducted an analysis of an ePROM embedded in a mobile app designed for monitoring patients undergoing cancer treatment. Developed collaboratively by medical oncologists and software engineers, this app empowers patients to document their symptoms, quality of life, emotions, emergency room visits, and hospitalizations. Upon app registration, patients willingly share their data with their medical team, along with essential demographic information. A standout feature is the online chat facilitating real-time communication with the medical team, consolidating all information securely in one place. This patient-centric app is provided free of charge. Our study involved a retrospective and descriptive analysis focusing solely on data related to exchanged messages in the online chat between cancer patients and the medical team. These conversations spanned from February 2022 to January 2024 and included patients referred by physicians recommending our platform. The analysis centered on the frequency of non-technical words used in real-time conversations, clustered into semantic groups. Results: Our findings revealed a total exchange of 470,597 words across 684 conversations over a two-year period. In the healthcare context, the most frequent words were categorized as follows: 1) Seeking in-person assistance (568; 0.12%): hospital (424 mentions), emergency (82), urgent/urgency (51), and primary care (UBS, Portuguese acronym) (11); 2) Doubts regarding anything (979; 0.20%): doubt (694 mentions) and question (285); 3) Non-technical one-word symptoms (5213; 1.10%): pain (1821 mentions), nausea (961), tiredness (514), diarrhea (428), vomit (364), fever (304), cough (221), numbness (197), dizziness (162), insomnia (130), constipation (101), and wheezing (10). Conclusions: Our analysis showed two key insights: first, doubts persist throughout treatment, intertwined with the management of side effects; and second, the burden on patients is substantial, whether stemming from uncertainty about the next steps or the necessity for in-person assistance. Cancer's mental and physical toll underscores the importance of having a readily available team to provide guidance, even on simple instructions. In this light, virtual platforms may represent the future of care delivery. Continuous patient monitoring emerges as pivotal for enhancing healthcare assistance, treatment, and outcomes across various cancer types.

Electronic patient-reported outcome measures (E-Proms): Results of the H2020 CAPABLE project for patients with metastatic renal cell cancer (mRCC).

11045 Background: E-Proms were shown to benefit both survival and quality of life (QoL) of cancer patients. So far, E-Proms have been mostly implemented as the electronic version of validated, paper-based questionnaires typically administered at follow-up visits. Benefits of telemedicine systems that put symptom reporting within a wider framework embracing a holistic view of a patient's wellbeing are still under-investigated. Methods: Thirty mRCC patients were enrolled in the CAPABLE project intervention cohort during 2023. They were provided with the CAPABLE smartphone app, and with a smartwatch able to monitor vital parameters, physical activity, and sleep. The app acts as a virtual coach, allowing patients to enter any symptom they experience through an interface inspired by both CTACE and proCTCAE. Immediate feedback on whether to contact or not a doctor is generated according to the symptom severity. Patient’s data are matched with the ESMO guidelines for toxicity management, a selection of which was computerized within CAPABLE, and any generated recommendation is shown to the patient. The app manages the symptom follow up, periodically prompting the patient to report any change, and it also promotes activities aimed at improving patients’ education, mental wellbeing and lifestyle. All the entered data may be visualized by doctors at the hospital. The CAPABLE cohort was compared with a control cohort of 77 mRCC patients, enrolled in 2021/2022, who underwent standard care. All patients filled in a set of questionnaires measuring QoL, satisfaction, nutritional and psychological status at enrollment (T0), after 3 months (T1) and after 6 months (T2). A focus group with the CAPABLE cohort was held close to the end of the study. In this report the primary outcome, i.e. EORTC QLQ-C30 score for QoL, is discussed, together with qualitative results from the focus group. Results: The analysis shows an increase in the average QoL for the CAPABLE cohort (80.7 vs 84.9), and a slight decrease in the controls (80 vs 77), with a statistically significant interaction between time and cohort (p < 0.05). Considering QLQ-C30 subscales, CAPABLE patients showed less fatigue and improved social and role functioning. As from the focus group, the app was perceived as effective and useful. More connection with the patient’s clinical pathway and more personalization according to specific treatments were highlighted as needed improvements. Conclusions: This study shows that E-Proms may be effectively included in a comprehensive and engaging system for remote management of mRCC patients. Clinical trial information: NCT06161233 .

Feasibility and utilization of electronic patient-reported outcome measures for lung cancer in routine clinical care.

11107 Background: Prior studies have shown the value of Patient-Reported Outcomes (PRO) in cost burden, quality of life (QoL), and survival in cancer care. To facilitate focus on patient-centricity and value-based care, the International Consortium for Health Outcomes Measurements (ICHOM) and European Health Outcomes Observatory (H2O) developed a Core Outcomes Set (COS) in lung cancer. We explored the feasibility of deploying standardized PRO measures among patients with lung cancer in US clinical practice. Methods: A retrospective database study was conducted, with IRB waiver, using Carevive PROmPT, an electronic PRO (ePRO) remote symptom monitoring platform with weekly surveys comparable in scope to ICHOM/H2O COS, of symptomatic adverse events (PRO-CTCAE), physical function (PROMIS 4A Physical Function), and QoL items (EORTC QLQ-C30 items #29,30). Severe PRO-CTCAE symptom scores triggered care team alerts. From 9/2020 to 5/2023, 207 patients enrolled across 9 US cancer centers. Patients were ≥18 years, with lung cancer, and in current treatment. Patient engagement was measured by survey compliance, follow-up time, and completeness; clinician engagement was measured by platform utilization time, time to alert response, and clinical action taken. Results: Participants were 50% female, 86% White, 12% African American, median age 68, 81% NSCLC, and 26% with metastatic disease. Median survey persistence: 8 weeks, with 85% compliance over that time. Of domains assessed, 37 (58%) from Carevive data overlapped with ICHOM/H2O COS, with 19 measured over time. Overlapping domains included 15 clinical outcomes with 60% median completion rate and 22 PRO domains with 98% median completion. Of 19 domains assessed longitudinally, median compliance was 76%. Of patients triggering ≥1 ePRO symptom alert, 87% were within 4 weeks, with 46% requesting call-backs. Median clinician follow-up to alerts was 20 hours, with 69.3% addressed within 48 hours. Clinicians accessed the platform 2-3 times weekly, for median 2 minutes (range: 1-14 minutes) per login for nurses and Advanced Practitioners (AP). 89% of alerts were addressed by nurses and AP. Of alert responses, 66% indicated continuation of treatment, 12% were escalated to the clinical team, and 1% were escalated to hospitalization or ER visit. Conclusions: Results support the feasibility of integrating a standard set of multi-domain ePRO measures, comparable to the ICHOM/H2O COS, into routine cancer care, across multiple sites, with consistent patient engagement and provider utilization. One limitation is that clinical and financial impact were not directly assessed. Future research should explore direct clinician feedback, systematic implementation of PRO measures, and impacts on patient outcomes, resource utilization, and health systems.

Progress Tracker Breast Cancer Registry: A Breast Cancer Canada initiative.

e23018 Background: Significant gaps exist in the collection of real-world evidence and validated patient-reported outcome measures (PROMs) data from individuals with breast cancer. Variations in treatment and surveillance care across regional jurisdictions present knowledge gaps across diverse populations which remain difficult to study. The PROgress Tracker Breast Cancer Registry, a large, prospective Canadian PROMs cohort study aims to identify care gaps through the lived patient experience to inform patient-centered care and new research directions. Methods: PROgress Tracker is a real-world, longitudinal, non-interventional PROMs registry directed by Breast Cancer Canada, a registered non-profit patient-led organization, and data managed by University of Calgary’s POET program. Launched in October 2023, this registry aims to enroll up to 50,000 adult Canadian participants with a histologic diagnosis of in-situ or invasive breast cancer (stage 0 through IV) within 10 years. A volunteer-led peer-to-peer support model, based in regional and provincial hubs across Canada, facilitates participant recruitment, engagement, and retention. Individuals who self-identify for study inclusion provide informed consent, demographic and socioeconomic profile, and clinical information on their breast cancer diagnosis. Every three months (and up to 10 years) a bilingual digital platform to reduce barriers to access is used to provide all PROgress Tracker participants 8 validated PROMs to capture evolving measures of self-efficacy for wellbeing, symptoms and overall global functioning. Based on treatment, up to 10 additional PROMs to assess the immediate adverse effects and long-term impacts of treatment are collected. PROgress Tracker has the additional capacity to link to external ethics-approved studies to investigate clinical outcome and healthcare utilization metrics for participants consenting to additional studies. Results: In progress. Conclusions: PROgress Tracker represents Canada’s first national PROMs breast cancer registry. Its unique design and implementation by a patient-led research organization helps fill gaps in current knowledge through longitudinal follow up of patients prior to, during, and after cancer care, and from the time from diagnosis through active treatment, long-term survivorship, and/or palliative care. The PROgress Tracker Registry will comprehensively gather the validated real-world data information rarely collected in in the traditional clinical or trial-based research setting using a novel self-enroll design and digital process. Such information is crucial to support evidence-based decision making to inform patient-centered healthcare change. This allows comparison across Canadian jurisdictions, is scalable to other jurisdictions around the world and further explores the utility of electronic PROMs data capture within a diverse patient population.

A clinical audit of patient outcomes in real-world acupuncture practice.

Clinical auditing represents a valuable and cost-effective method for the collection of patient outcomes and is increasingly being used to inform clinical guidelines. The aim of this clinical audit was to assess patient outcomes across a small subset of acupuncture practitioners and private practices in the United Kingdom. The Measure Yourself Medical Outcomes Profile (MYMOP) questionnaire and the Patient Global Impression of Change (PGIC) scale were used as outcome measures. Additional questions assessed adverse events and patient experience with care. Clinical data were collected utilising an electronic patient-reported outcome measures (ePROMs) system. Baseline data were collected for a total of 233 health complaints (from 232 patients), of which 45.9% were musculoskeletal and 26.2% were psychological. Follow-up outcomes data were available for 144 health complaints (61.8% completion rate). For PGIC responses, >90% of health complaints were reported as at least 'minimally improved'. This was reduced to >51% when controlling for missing data. There was a gradual improvement in both mean MYMOP scores (24.5%-43.0%) and PGIC responses of 'very much improved' (12.3%-56.3%) over a 6-month period. A clinically significant improvement (>1 point change, p ⩽ 0.001) was seen in mean MYMOP scores compared to baseline from 4 to 8 weeks and symptom 1 MYMOP scores from 1 to 4 weeks. A moderately strong, negative correlation was seen between outcome measures (r = -0.507, p < 0.001). The majority of patients reported clinically meaningful improvements for their main health complaints/symptoms, which appeared to be sustained in the medium to long-term.

Relevance of Patient-Reported Outcome Measures in Patients with Cancer: Detection of Underrated Psychological Distress of Palliative Care Patients in an Outpatient Setting.

The overall level of physical and psychological symptom burden of advanced cancer patients (ACP) in an outpatient setting is notoriously difficult to assess. Therefore, more efficient and objective assessment is needed to accomplish this important task. The aim of this study was to compare the physical and psychological symptom burden rated by palliative care nurse (PCN) versus patient's self-rating. This retrospective German cohort study analyzed symptom burden using an electronic patient-reported outcome measure (ePROM). After referral to an outpatient specialized palliative care team, a PCN assessed the patient's symptoms both up to three months before initial presentation (IP) and at IP.Group differences were identified using analyses of variance (ANOVA). Further descriptive analysis of patient characteristics was used. The study enrolled 164 ACP who were referred to a specialized palliative care (SPC) team. Mean age was 62 (± 12.6) years. Gastrointestinal (n = 46; 28.0%), lung (n = 32; 19.5%), and breast cancer (n = 34; 20.7%) were the most common entities. Most frequent reasons for referral were pain (n = 55; 33.5%) and social care problems (n = 36; 22.0%). Patients reported significantly higher grades on depression (n = 144; Z = -2.8, p = 0.005), anxiety (n = 144; Z = -2.376, p = 0.018), and worsened general condition (n = 139; Z = -7.005, p < 0.001). ACP in an outpatient setting were more frequently referred to SPC for pain management and assistance with social problems with regard to the cancer and its limitations. Psychological distress was underrated by the PCN in comparison with patient self-reporting through ePROM. This underlines the importance of self-reported outcome measurement.

Exploring the value of routinely collected data on EQ-5D-5L and other electronic patient-reported outcome measures as prognostic factors in adults with advanced non-small cell lung cancer receiving immunotherapy

ObjectiveInvestigate whether routinely collected electronic patient-reported outcome measures (ePROMs) add prognostic value to clinical and tumour characteristics for adults with advanced non-small cell lung cancer (NSCLC) receiving immunotherapy.Methods and analysisWe...

OA41 Exploring patterns of patient engagement with electronic patient reported outcome measures in inflammatory arthritis using latent class growth modelling

Abstract Background/Aims Routine collection of electronic patient reported outcome measures (ePROMs) can facilitate dynamic disease activity monitoring in patients with inflammatory arthritis (IA). In a real-world cohort of patients with IA, we describe patient characteristics associated with ever engaging with ePROMs, evaluate whether there are distinct groups of patients with similar engagement trajectories over time and identify patient characteristics associated with these groups. Methods We conducted a prospective observational study based on routinely collected data from a remote monitoring platform (RMP) at Guy’s and St Thomas’ NHS Foundation Trust in London, UK, between 18 December 2018 and 15 August 2022. Patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) and axial spondyloarthritis (AxSpA) were sent text message requests to complete 4-weekly disease specific PROMs. A patient was defined as an engager if they completed at least one PROM episode during the study period of 68 weeks. Logistic regression (LR) was used to identify associations between baseline characteristics and any PROM engagement. Latent class growth modelling (LCGM) was used to determine PROM engagement trajectories, with multinomial LR exploring baseline characteristic associations with latent trajectory class membership. Results Of 1,203 patients on RMP in the study period, 1,129 met the inclusion criteria, of which 91.5% (95% CI 89.7% - 93.0%) completed at least one PROM. Mean age was 49 years and 64% were female. 60% had RA, 24.4% had PsA and 15.7% had AxSpA. Overall engagement was relatively high throughout, with continued engagement &amp;gt;60% over the remaining 68 weeks. Older patients (adj OR 0.98, 95% CI 0.96 - 0.99), those from more deprived areas (adj OR 0.80, 95% CI 0.68 - 0.96) and those who attended &amp;lt;80% of their outpatient visits in the preceding 3 years (adj OR 0.48, 95% CI 0.26 - 0.89) were less likely to complete a PROM. Four latent trajectory classes were identified: consistent engagers (38.1%), high-variable engagers (24.3%), low-variable engagers (19.5%) and never &amp; dis-engagers (18.1%), with a mean (SD) overall response rate per class of 96.5% (7.1), 74.1% (12.1), 35.6% (13.8) and 7.5% (12.0) respectively. Compared to the consistent engager class, the two variable engager classes were significantly more likely to be younger at baseline, whilst the never &amp; dis-engager class was more likely to be from a deprived area. Having an IA type of PsA and previous clinic non-attendance was associated with membership of the three lower engaging classes. Conclusion We have described key patient characteristics that influence engagement with ePROMs in a real-world cohort of patients with IA, and patterns of engagement over time. Overall engagement was very high with &amp;gt;90% of patients enrolled engaging with PROM completion. There is still scepticism among clinicians about remote monitoring’s ability to work, and our findings should be reassuring: patients do engage with ePROMs over time. Disclosure N. Arumalla: None. Z. Yang: None. S. Norton: None. M. Crooks: None. A. Khan: None. R. Fitzgerald: None. R. Gilligan: None. E. Lindberg: None. T. Tabibi: None. Y.L. Man: None. S. Subesinghe: None. J.B. Galloway: Consultancies; Abbvie, Biovitrum, BMS, Celgene, Chugai, Galapagos, Gilead, Janssen, Lilly, Pfizer, Novartis, Roche, Sanofi, Sobi, UCB. Honoraria; Abbvie, Biovitrum, BMS, Celgene, Chugai, Galapagos, Gilead, Janssen, Lilly, Pfizer, Novartis, Roche, Sanofi, Sobi, UCB. T. Garrood: Shareholder/stock ownership; Serac healthcare. Honoraria; Abbvie, UCB. Grants/research support; Versus Arthritis, Pfizer, Gilead, Guy's and St Thomas' Charity, NHSX. Other; Fresnius-Kabi.

E041 Feasibility and acceptability of electronic patient reported outcome measures in the routine care of people with inflammatory arthritis: Haywood Arthritis Portal study

Abstract Background/Aims Electronic patient-reported outcome measures (ePROMs) assessing disease activity, function, pain, and quality of life can facilitate innovative inflammatory arthritis (IA) care, such as automating patient-initiated follow-up. This mixed-methods study evaluated whether their use is feasible and acceptable in routine care of people with inflammatory arthritis in an NHS setting. Methods The Haywood Arthritis Portal (HAP) is an NHS co-designed online patient platform, enabling people with IA under the Midlands Partnership University NHS Foundation Trust (MPFT) to enter ePROMs using any internet-enabled device. People with IA attending recruiting clinics from January-October 2023 received text message/letter invitations to complete HAP pre-appointment. Non-completers could complete HAP on tablets at the clinic. Consenters also completed a survey assessing ePROMs acceptability and HAP usability. Responses were summarised as proportions, stratified by age, gender, IA type, and home/clinic-completion status. Purposively sampled survey-completers participated in semi-structured interviews, providing deeper understanding of ePROMs/HAP feasibility/acceptability. This abstract presents data from an interim analysis of consenting patients with available survey and case report form data. Results Survey Population: 210 patients were included: 107 (51%) home-completers; 98 (47%) clinic-completers; 5 (2%) HAP non-completers; 70% female; mean age 60 years. Most had RA (70%), followed by Axial SpA (15%), undifferentiated IA (8%), and PsA/other SpA (7%). ePROMs Acceptability: 86% rated ePROMs acceptable/completely acceptable; 82% felt their completion required little/no effort; 87% agreed/strongly agreed their answers were likely to help their care. Fewer people aged &amp;gt;70 years rated ePROMs acceptable/completely acceptable (70%) compared with younger age groups (ranging 82%-100%); the same was the case for clinic-completers (79%) vs. home-completers (93%). Perceived ePROMs Use by Clinicians: 58% agreed/strongly agreed their healthcare professional had looked at their ePROMs. This was proportionally more in people aged 18-40 (79%) than older age groups (ranging 48%-58%), in axial SpA (70%) than other IA types (ranging 50%-54%), and in males (67%) vs. females (53%). HAP Usability: 78% agreed/strongly agreed HAP was easy to use. This was higher in those aged 18-40 years (93%) than those aged &amp;gt;70 years (70%), and in home-completers (89%) than clinic-completers (67%), Interviews: involved 11 participants and findings supported quantitative results, in that participants generally considered ePROMs acceptable, HAP easy to use, yet they were uncertain if their entries were used by their healthcare professional. In addition, participants were reassured that HAP was NHS-developed and secure, and expressed interest in completing ePROMs more regularly. Conclusion Using ePROMs in routine NHS care is acceptable to most people with IA, particularly younger people and those able to enter them on their own devices. The next step in this study is to consider healthcare professionals’ perspectives on ePROMs, including how they can be best integrated into consultations to ensure patients feel their entries are considered. Disclosure N. Cox: None. C. Kettle: None. H. Wang: None. S. Dutta: None. J. Packham: None. J. Galloway: None. J. Hill: None. S. Muller: None. S. Hider: None. Z. Paskins: None. L. Bullock: None. I.C. Scott: None.

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.

Validation of Biomarkers and Patient-Reported Outcome Measures to Improve the Diagnosis and Treatment of Eustachian Tube Dysfunction

Patients who suffer from Eustachian tube dysfunction (ETD) experience a significant decline in quality of life. To enhance patient outcomes, it is crucial to establish an accurate diagnosis, assess treatment effectiveness, and evaluate the severity of the condition. Substantial progress has recently been made in identifying biomarkers (BMs) and developing ETD clinical outcome assessments (COAs). This study examines the current state of BMs and COAs in ETD, including the methods evaluated historically and their potential clinical applications. The research in this area emphasizes the importance of using objective measures, such as middle ear pressure (MEP) and patient-reported outcome measures (PROMs), for diagnosing and evaluating ETD. Further, I discuss how electronic PROMs (ePROMs) and other digital health technologies can guide the development of innovative PROMs that ETD. Despite significant advances in COAs for ETD, much work remains to validate and improve them before their implementation in clinical practice. There has been less focus on vertigo as a symptom in recent assessments of ETD, suggesting that further examination of this aspect is needed. By validating BMs and COAs for ETD, we could enhance long-term patient outcomes and quality of life through improved diagnostic accuracy and evaluation of treatment efficacy.

147 Patient Reported Experience of Using Electronic Patient Reported Outcome Measures (ePROMs) During and After Lung Radiotherapy. A Pilot Study

147 Patient Reported Experience of Using Electronic Patient Reported Outcome Measures (ePROMs) During and After Lung Radiotherapy. A Pilot Study

146 Using Electronic Patient-Reported Outcome Measures (ePROMs) to Monitor Symptoms and Quality of Life for Patients with Lung Cancer Undergoing Radiotherapy. A Pilot Study

146 Using Electronic Patient-Reported Outcome Measures (ePROMs) to Monitor Symptoms and Quality of Life for Patients with Lung Cancer Undergoing Radiotherapy. A Pilot Study

Benchmark findings from a veteran electronic patient-reported outcomes evaluation from a chronic pain management telehealth program

BackgroundChronic pain is a leading cause of disability and negatively impacts biological/physical, psychological, and social aspects of life resulting in significant pain interference or disability. This project was part of a longitudinal mixed-methods implementation evaluation of the TelePain-Empower Veterans Program (EVP), a non-pharmacological chronic pain intervention. The purpose of this quality management project was to examine electronic patient-reported outcome measures (ePROs) including primary pain-related (intensity, interference, catastrophizing, kinesiophobia) and secondary outcomes (physical, psychological, acceptance, social) to determine TelePain-EVP effectiveness. Secondary purpose was to examine dosing effects to better understand potential dose relationships between EVP use and ePROs.MethodsStandardized ePRO measures were examined at week 1 (baseline), week 10 (post-EVP), and week 26 (follow-up). Qualtrics, a cloud-based platform was used to collect ePRO data at each time point. Veterans that completed at-least one survey at any specified time point were categorized as responders (n = 221). Linear-mixed models (LMMs) were fit to assess changes for each primary and secondary ePRO.ResultsParticipants ranged from 24 to 81 years old; veterans were typically male (65.16%), black or African American (76.47%), married or partnered (41.63%), attended at-least some college or vocational school (67.87%), and reported low back as their primary pain location (29.41%). There was a significant decrease in pain catastrophizing from baseline to post-TelePain-EVP (p < .001). However, pain catastrophizing improvement from baseline was not present at week 26 (p = .116). Pain interference also decreased from baseline to post-treatment (p = .05), but this improvement did not exceed the adjusted significance threshold. Additional pre-post improvements were also observed for certain secondary ePROs: psychological (anxiety, depression), acceptance (activities engagement). Only the activities engagement effect remained 26 weeks from baseline. Mixed results were observed for EVP dose across primary and secondary outcomes.ConclusionsEvidence from this evaluation indicate that TelePain-EVP has positive outcomes for certain pain (catastrophizing), psychological (anxiety, depression), and acceptance (activities engagement) for veterans with chronic pain. More TelePain related studies and enterprise-wide evaluations are needed along with comparative and cost effectiveness methods to determine patient benefits and the economic value gained of treatment options such as TelePain-EVP.

Implementation of the e-IPOS in Home Palliative Cancer Care: A Quasiexperimental Pilot Study.

Electronic patient-reported outcome measures (e-PROMs) offer advantages in palliative cancer care, including rapid completion, improved data quality and direct storage, improving clinical decision-making. The electronic Integrated Palliative Care Outcome Scale (e-IPOS) in this context enables thorough self-assessment by patients, enhancing symptom management and self-reflection of their current situation. To evaluate the feasibility of implementing the e-IPOS in home palliative cancer care. The primary outcomes included the enrollment consent rate, study retention rate, e-IPOS completion rate and response completeness, and the number of clinical assessments and interventions performed during home visits. The secondary outcomes were the number of unscheduled visits and patients' perceived quality of life. A two-group quasiexperimental clinical pilot study. The control group received standard palliative care, the intervention group received standard care along with weekly e-IPOS completion during home visits. Both groups were enrolled for 4weeks. Adults with advanced cancer from the home palliative care unit of the Istituto Nazionale dei Tumori of Milan. Twenty-three patients were enrolled (74.19%), and 20 completed the study (drop-out: 13.04%). 82.5% of the expected e-IPOS responses were received, of which 96.9% were fully complete. In the intervention group, the Wilcoxon test showed an increase in identified needs and documented interventions (P < .05) and a decrease in unscheduled visits (P < .05). It is feasible to recruit people via home palliative care for an e-IPOS implementation study. Future fully powered studies should investigate the feasibility and assess patients' perceptions of its use to better understand its clinical benefits.

How to Monitor Disease Activity of Axial Spondyloarthritis in Clinical Practice.

Treatment guided by periodic and quantitative data assessment results in better outcomes compared to using clinical gestalt. While validated generic as well as specific disease activity measures for axial spondyloarthritis (axSpA) are available, there is vast scope to improve their actual utilization in routine clinical practice. In this review, we discuss available disease activity measures for axSpA, describe results from the survey conducted among general rheumatologists as well as Spondyloarthritis Research and Treatment Network (SPARTAN) members about disease activity measurement in daily practice, and discuss ways to improve axSpA disease activity using technological advances. We also discuss the definitions of active disease and target for the treatment of axSpA. The 2019 American College of Rheumatology (ACR)/Spondylitis Association of America (SAA)/Spondyloarthritis Research and Treatment Network (SPARTAN) axSpA treatment guidelines conditionally recommend the regular monitoring of disease activity using a validated measure such as Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) or Ankylosing Spondylitis Disease Severity Index (ASDAS). Assessment of Spondyloarthritis International Society (ASAS)-European Alliance of Associations for Rheumatology (EULAR) guidelines recommend ASDAS as the most appropriate instrument for the assessment of disease activity, preferably calculated using C-reactive protein (CRP). ASAS has selected a core set of variables which were updated recently and have been endorsed by the Outcome Measures in Rheumatology Clinical Trials (OMERACT) group in order to bring homogeneity in assessment of axSpA. In a recent study, Patient-Reported Outcomes Measurement Information System (PROMIS®) measures were able to discriminate inactive, moderate, and high-very high ASDAS activity groups. A newly developed semi-objective index P4 (pain, physical function, patient global, and physician global) correlates well with BASDAI and ASDAS in axSpA and can also be used for other rheumatic diseases in busy clinical practices. Regular disease activity monitoring is critical for long-term management of axSpA and shared decision-making. The integration of electronic health records and smart devices provides a great opportunity to capture patient-reported data. Automated capture of electronic patient-reported outcome measures (ePROMs) is a highly efficient way and results in consistent regular monitoring and may improve the long-term outcomes. While currently used measures focus only on musculoskeletal symptoms of axSpA, a composite disease activity measure that can also incorporate extra-articular manifestations may provide a better assessment of disease activity.

Predictive Criterion Validity of the Parsley Symptom Index Against the Patient-Reported Outcomes Measurement Information System-10 in a Chronic Disease Cohort: Retrospective Cohort Study.

Approximately 60% of US adults live with chronic disease, imposing a significant burden on patients and the health care system. With the rise of telehealth, patient-reported outcomes measures (PROMs) have emerged as pivotal tools for managing chronic disease. While numerous PROMs exist, few have been designed explicitly for telehealth settings. The Parsley Symptom Index (PSI) is an electronic patient-reported outcome measure (ePROM) developed specifically for telehealth environments. Our aim is to determine whether the PSI predicts changes in the established Patient-Reported Outcomes Measurement Information System-10 (PROMIS-10) Global Health, a 10-question short form. We conducted a retrospective cohort study using data from 367 unique patients, amassing 1170 observations between August 30, 2017, and January 30, 2023. Patients completed the PSI and the PROMIS-10 multiple times throughout the study period. Using univariate regression models, we assess the predictive criterion validity of the PSI against PROMIS-10 scores. This study revealed significant relationships between the PSI and PROMIS-10 physical and mental health scores through comprehensive univariate analyses, thus establishing support for the criterion validity of the PSI. These analyses highlighted the PSI's potential as an insightful tool for understanding and predicting both mental and physical health dimensions. Our findings emphasize the importance of the PSI in capturing the nuanced interactions between symptomatology and health outcomes. These insights reinforce the value of the PSI in clinical contexts and support its potential as a versatile tool in both research and practice.

Remote Symptom Monitoring with Clinical Alerts Following Mastectomy: Do Early Symptoms Predict 30-Day Surgical Complications.

Electronic patient-reported outcome measures (ePROMs) for real-time remote symptom monitoring facilitate early recognition of postoperative complications. We sought to determine whether remote, electronic, patient-reported symptom-monitoring with Recovery Tracker predicts 30-day readmission or reoperation in outpatient mastectomy patients. We conducted a retrospective review of breast cancer patients who underwent outpatient (< 24-h stay) mastectomy with or without reconstruction from April 2017 to January 2022 and who received the Recovery Tracker on Days 1-10 postoperatively. Of 5,130 patients, 3,888 met the inclusion criteria (2,880 mastectomy with immediate reconstruction and 1,008 mastectomy only). We focused on symptoms concerning for surgical complications and assessed if symptoms reaching prespecified alert levels-prompting a nursing call-predicted risk of 30-day readmission or reoperation. Daily Recovery Tracker response rates ranged from 45% to 70%. Overall, 1,461 of 3,888 patients (38%) triggered at least one alert. Most red (urgent) alerts were triggered by pain and fever; most yellow (less urgent) alerts were triggered by wound redness and pain severity. The 30-day readmission and reoperation rates were low at 3.8% and 2.4%, respectively. There was no statistically significant association between symptom alerts and 30-day reoperation or readmission, and a clinically relevant increase in risk can be excluded (odds ratio 1.08; 95% confidence interval 0.8-1.46; p = 0.6). Breast cancer patients undergoing mastectomy with or without reconstruction in the ambulatory setting have a low burden of concerning symptoms, even in the first few days after surgery. Patients can be reassured that symptoms that do present resolve quickly thereafter.

Acceptability, Perceptions, and Experiences Regarding Electronic Patient-Reported Outcomes After Laparoscopic Cholecystectomy: Protocol for a Mixed Methods Feasibility Study.

Patient-reported outcomes (PROs) can be defined as any report of a patient's health taken directly from the patient. Routine collection of PRO data has been shown to offer potential benefits to patient-doctor communication. Electronic forms of PRO measures (PROMs) could be more beneficial in comparison to traditional PROMs in obtaining PROs from patients. However, it is currently unclear whether the routine collection of electronic PRO data could result in better outcomes for patients undergoing laparoscopic cholecystectomy (LC). This study aims to explore the perspectives of patients and surgeons on the use of electronic PROMs. Based on prior research, technical skill and experience level of the surgeon, long-term quality of life, patient involvement in decision-making, communication skills of the surgeon, cleanliness of the ward environment, and standards of nursing care are identified to be the most important factors for the patients. This is a mixed methods prospective study that will collect both quantitative (survey) and qualitative (interview) data. The study has two components. The first involves the distribution of an electronic presurvey to patients who received elective LC within 48 hours of their surgery (n=80). This survey will explore the perspective of patients regarding the procedure, hospital experience, long-term outcomes, and the perceived value of using PROMs. These patients will then be followed up after 1 year and given another survey. The second component involves the distribution of the same survey and the completion of structured interviews with general surgeons (n=10). The survey will ascertain what PROs from the participants are most useful for the surgeons and the interviews will focus on how the surgeons view routine PRO collection. A convenience sampling approach will be used. Surveys will be distributed through Qualtrics and interviews will be completed on Microsoft Teams. Data collection began on February 14, 2023. As of February 12, 2024, 71 of 80 recruited patients have been given the presurvey. The follow-up with the patients and the general surgeon components of the study have not begun. The expected completion date of this study is in April 2025. Overall, this study will investigate the potential of electronic PRO collection to offer value for patients and general surgeons. This approach will ensure that patient care is investigated in a multifaceted way, offering patient-centric guidance to surgeons in their approach to care. DERR1-10.2196/57344.

Seizing the moment: The time for harnessing electronic patient-reported outcome measures for enhanced and sustainable metastatic breast cancer care is now

The sustainability of healthcare systems is under pressure. Unlike care for many other chronic diseases, cancer care has yet to empower patients in effectively self-managing both the medical and emotional consequences of their condition, including adapting to changes in lifestyle and work, which is essential to achieve optimal health and recovery. Although proposed as a potential solution for sustainable healthcare and support for optimal health and recovery already decades ago, practical implementation of digital care lags behind.We believe electronic patient reported outcome measures (ePROMs) could play an important role in creating sustainable healthcare, both to guide complex treatment pathways and to empower survivors to self-manage consequences of diagnosis and treatment. That is, ePROMs can be used for screening and monitoring of symptoms, but also for treatment decision-making and to facilitate communication about quality of life. We therefore see opportunities for improvements in quality of care, quality of life, and survival of cancer patients, as well as research opportunities, as ePROMs collection can lead to better understanding of care needs. The ‘10 Actions for Change report’ of the Advanced Breast Cancer Global Alliance stresses a critical need for improvement of care for metastatic breast cancer (MBC) patients. We therefore in this paper focus on MBC care and research.