Patient Compliance in Assessing Electronic Patient-Reported Outcome Measures after Urologic Surgery.

INTRODUCTION: This study aimed to assess patient compliance with a newly established electronic patient-reported outcome measure (ePROM) system after urologic surgery and to identify influencing factors. METHODS: Digital surveys were provided to patients undergoing cystectomy, radical or partial nephrectomy, or transurethral resection of bladder tumor via a newly established ePROM system. Participants received a baseline survey preoperatively and several follow-up surveys postoperatively. Multivariable regression analysis was performed to identify factors predicting compliance. RESULTS: Of N = 435 eligible patients, n = 338 completed the baseline survey (78.0%). Patients who did not participate were significantly more likely male (p = 0.004) and older than 70 years (p = 0.005). Overall, 206/337 patients (61.3%) completed the survey at 1-month, 167/312 (53.5%) at 3-month, and 142/276 (51.4%) at 6-month follow-up. Lower baseline quality of life (odds ratio: 2.27; p = 0.004) was a significant predictor for dropout at 1-month follow-up. Low educational level was significantly associated with low compliance at 3- (OR: 1.92; p = 0.01) and 6-month follow-up (OR: 2.88; p < 0.001). CONCLUSION: Acceptable compliance rates can be achieved with ePROMs following urologic surgery. Several factors influence compliance and should be considered when setting-up ePROM surveys.

Improving the Understanding and Managing of the Quality of Life of Patients With Lung Cancer With Electronic Patient-Reported Outcome Measures: Scoping Review.

BACKGROUND: Electronic patient-reported outcome measures (ePROMs) are essential to clinical practice and research. The growth of eHealth technologies has provided unprecedented opportunities to collect information systematically through ePROMs. Although they are widely used in scientific research, more evidence is needed to determine their use and implementation in daily clinical practice. For example, when diagnosed, patients with lung cancer are at an advanced stage of the disease. This entails tremendous burden because of high mortality and losses in the different dimensions of the human being. In this case, monitoring symptoms and other outcomes help improve the patient's quality of life. OBJECTIVE: ePROMs offered unprecedented opportunities to collect information systematically. Our goal was to demonstrate that ePROMs are more useful in controlling patient symptoms, lung cancer, and overall survival than their alternatives, such as nonelectronic PROMs. METHODS: This exploratory review considered articles published between 2017 and 2022 identified through searches of PubMed, Scopus, Cochrane, CINAHL, and PsycINFO. We found 5097 articles; after removing the duplicates, we reduced them to 3315. After reading the summary, we were left with 56. Finally, after applying the exclusion criteria, we reviewed 12. The 5-step framework by Arksey and O'Malley was used to refine the initial search results with the following research questions: Do ePROMs help physician-patient communication? To what extent do they improve decision-making? Are institutions and their digitization policies barriers to or facilitators of this process? and What else is needed for routine implementation? RESULTS: This review included 12 articles. We found that ePROMs are an integrative and facilitative communication tool, highlighting their importance in the relationship between palliative care and medical oncology. ePROMs help assess patient symptoms and functionality more accurately and facilitate clinical decision-making. In addition, it allows for more precise predictions of overall patient survival and the adverse effects of their treatments. The main institutional obstacles are the initial investment, which can be costly, and the data protection policy. However, enablers included better funding through the development of telemedicine, support from institutional leaders to overcome resistance to change, and transparent policies to ensure the safe and secure use of ePROMs. CONCLUSIONS: Routine collection of remote ePROMs is an effective and valuable strategy for providing real-time clinical feedback. In addition, it provides satisfaction to patients and professionals. Optimizing ePROMs in patients with lung cancer leads to a more accurate view of health outcomes and ensures quality patient follow-up. It also allows us to stratify patients based on their morbidity, creating specific follow-ups for their needs. However, data privacy and security are concerns when using ePROMs to ensure compliance with local entities. At least four barriers were identified: cost, complex programming within health systems, safety, and social and health literacy.

'It made me feel part of the team, having my homework to do' - women and specialist nurse experiences of remote follow-up after ovarian cancer treatment: a qualitative interview study.

PURPOSE: Ovarian cancer patients require monitoring for relapse post-treatment, and alternative follow-up pathways are increasing, which require in-depth exploration to ensure acceptability and inform implementation. This study aimed to explore women and specialist nurses' experiences of participating in a feasibility study of an electronic patient-reported outcome (ePRO) follow-up pathway after ovarian cancer treatment. METHODS: The feasibility study incorporated an ePRO questionnaire, blood test and telephone consultation with a specialist nurse, instead of face-to-face hospital visits. All women and the nurses involved were invited to take part in nested semi-structured interviews. Interviews were recorded and transcripts analysed using framework analysis. RESULTS: Twenty interviews were conducted (16 out of 24 women who took part in the feasibility study and all 4 nurses). Four themes were identified: (1) readiness and motivators, (2) practicalities and logistics, (3) personal impact and (4) future role. An overarching theme highlighted how women strived to seek reassurance and gain confidence. Most women and nurses were positive about the ePRO pathway and would happily continue using it. CONCLUSION: This work provides invaluable insight into the experiences of women on remote ePRO follow-up post-treatment. Important logistic and implementation issues were identified, which should inform future large-scale work to introduce and evaluate remote ePRO methods in cancer follow-up. This work highlights the key factors influencing women's readiness and acceptability of an ePRO pathway, and how services should be carefully designed to ensure patients feel reassured and confident post-treatment. Furthermore, it highlights that flexibility and patient preference should be considered in remote service delivery. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT02847715 (first registered 19 May 2016).

Oncology Informatics: Status Quo and Outlook.

Oncology has undergone rapid progress, with emerging developments in areas including cancer stem cells, molecularly targeted therapies, genomic analyses, and individually tailored immunotherapy. These advances have expanded the tools available in the fight against cancer. Some of these have seen broad media coverage resulting in justified public attention. However, these achievements have only been possible due to rapid developments in the expanding field of biomedical informatics and information technology (IT). Artificial intelligence, radiomics, electronic health records, and electronic patient-reported outcome measures (ePROMS) are only a few of the developments enabling further progress in oncology. The promising impact of IT in oncology will only become reality through a multidisciplinary approach to the complex challenges ahead.

Patient and Clinician Perspectives on Electronic Patient-Reported Outcome Measures in the Management of Advanced CKD: A Qualitative Study.

RATIONALE & OBJECTIVE: Chronic kidney disease (CKD) can substantially affect patients' health-related quality of life. Electronic patient-reported outcome measures (ePROMs) may capture symptoms and health-related quality of life and assist in the management of CKD. This study explored patient and clinician views on the use of a renal ePROM system. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: 12 patients with stage 4 or 5 CKD (non-dialysis dependent); 22 clinicians (6 CKD community nurses, 1 clinical psychologist, 10 nephrologists, 3 specialist registrars, and 2 renal surgeons) in the United Kingdom. ANALYTICAL APPROACH: Semi-structured interviews and focus group discussion during which patients received paper versions of the Kidney Disease Quality of Life-36 and the Integrated Patient Outcome Scale-Renal to exemplify the type of content that could be included in an ePROM. Thematic analysis of interview transcripts. RESULTS: 4 themes were identified: (1) general opinions of PROMs, (2) potential benefits and applications of an ePROM system, (3) practical considerations for the implementation of ePROMs, and (4) concerns, barriers, and facilitators. Patients were willing to complete ePROMs on a regular basis as part of their care despite clinician concerns about patient burden. Patients assessed the questionnaires favorably. Clinicians suggested that the extent of adoption of renal ePROM systems in routine clinical settings should be based on evidence of significant impact on patient outcomes. Clinicians were concerned that an ePROM system may raise patient expectations to unrealistic levels and expose clinicians to the risk for litigation. Patients and clinicians identified potential benefits and highlighted issues and concerns that need to be addressed to ensure the successful implementation of the renal ePROM system. LIMITATIONS: Transferability of the findings may be limited because only English-speaking participants were recruited to the study. CONCLUSIONS: A renal ePROM system may play a supportive role in the routine clinical management of patients with advanced CKD if the concerns of clinicians and patients can be sufficiently addressed.

Responsiveness, Reliability, and Minimally Important and Minimal Detectable Changes of 3 Electronic Patient-Reported Outcome Measures for Low Back Pain: Validation Study.

BACKGROUND: The Roland Morris Disability Questionnaire (RMDQ), visual analog scale (VAS) of pain intensity, and numerical rating scale (NRS) are among the most commonly used outcome measures in trials of interventions for low back pain. Their use in paper form is well established. Few data are available on the metric properties of electronic counterparts. OBJECTIVE: The goal of our research was to establish responsiveness, minimally important change (MIC) thresholds, reliability, and minimal detectable change at a 95% level (MDC95) for electronic versions of the RMDQ, VAS, and NRS as delivered via iOS and Android apps and Web browser. METHODS: We recruited adults with low back pain who visited osteopaths. We invited participants to complete the eRMDQ, eVAS, and eNRS at baseline, 1 week, and 6 weeks along with a health transition question at 1 and 6 weeks. Data from participants reporting recovery were used in MIC and responsiveness analyses using receiver operator characteristic (ROC) curves and areas under the ROC curves (AUCs). Data from participants reporting stability were used for analyses of reliability (intraclass correlation coefficient [ICC] agreement) and MDC95. RESULTS: We included 442 participants. At 1 and 6 weeks, ROC AUCs were 0.69 (95% CI 0.59 to 0.80) and 0.67 (95% CI 0.46 to 0.87) for the eRMDQ, 0.69 (95% CI 0.58 to 0.80) and 0.74 (95% CI 0.53 to 0.95) for the eVAS, and 0.73 (95% CI 0.66 to 0.80) and 0.81 (95% CI 0.69 to 0.92) for the eNRS, respectively. Associated MIC thresholds were estimated as 1 (0 to 2) and 2 (-1 to 5), 13 (9 to 17) and 7 (-12 to 26), and 2 (1 to 3) and 1 (0 to 2) points, respectively. Over a 1-week period in participants categorized as "stable" and "about the same" using the transition question, ICCs were 0.87 (95% CI 0.66 to 0.95) and 0.84 (95% CI 0.73 to 0.91) for the eRMDQ with MDC95 of 4 and 5, 0.31 (95% CI -0.25 to 0.71) and 0.61 (95% CI 0.36 to 0.77) for the eVAS with MDC95 of 39 and 34, and 0.52 (95% CI 0.14 to 0.77) to 0.67 (95% CI 0.51 to 0.78) with MDC95 of 4 and 3 for the eNRS. CONCLUSIONS: The eRMDQ was reliable with borderline adequate responsiveness. The eNRS was responsive with borderline reliability. While the eVAS had adequate responsiveness, it did not have an attractive reliability profile. Thus, the eNRS might be preferred over the eVAS for measuring pain intensity. The observed electronic outcome measures' metric properties are within the ranges of values reported in the literature for their paper counterparts and are adequate for measuring changes in a low back pain population.

Electronic Patient Reported Outcome Measures for Optimal Remote Symptom Management in Advanced Breast Cancer: Embracing Digital Health Technology.

OBJECTIVE: To review the use of electronic patient outcome measures (ePROMs) in advanced breast cancer (ABC) and its effectiveness in supporting remote symptom monitoring. DATA SOURCES: An overview of published randomized controlled trials using electronic patient-reported outcome measures (ePROMs) in ABC care. CONCLUSION: The use of ePROMs in ABC care combined with oncology clinical nurse specialist (CNS) interventions has shown that patient-centered care through remote monitoring of disease and treatment symptoms can improve ABC patient outcomes and experience. IMPLICATIONS FOR NURSING PRACTICE: Oncology clinical nurse specialists (CNSs) have an important role in the effective implementation of ePROMs in ABC care. CNSs are considered most appropriate to lead on and respond to ePROMs, addressing complex symptom issues and maximizing the quality of life (QoL) for the ABC patient. CNSs are a crucial link between the patient, primary and secondary level care health professionals, and the ePROM portal for ABC care.

The advantages, disadvantages, threats, and opportunities of electronic patient-reported outcome systems in cancer: A systematic review.

Objective: Electronic patient-reported outcome (ePRO) systems hold promise for revolutionizing communication between cancer patients and healthcare providers across various care settings. This systematic review explores the multifaceted landscape of ePROs in cancer care, encompassing their advantages, disadvantages, potential risks, and opportunities for improvement. Methods: In our systematic review, we conducted a rigorous search in Scopus, Web of Science, and PubMed, employing comprehensive medical subject heading terms for ePRO and cancer, with no date limitations up to 2024. Studies were critically appraised and thematically analyzed based on inclusion and exclusion criteria, including considerations of advantages, disadvantages, opportunities, and threats. Findings: Analyzing 85 articles revealed 69 themes categorized into four key areas. Advantages (n = 14) were dominated by themes like "improved quality of life and care." Disadvantages (n = 26) included "limited access and technical issues." Security concerns and lack of technical skills were prominent threats (n = 10). Opportunities (n = 19) highlighted advancements in symptom management and potential solutions for technical challenges. Conclusion: This review emphasizes the crucial role of continuous exploration, integration, and innovation in ePRO systems for optimizing patient outcomes in cancer care. Beyond traditional clinical settings, ePROs hold promise for applications in survivorship, palliative care, and remote monitoring. By addressing existing limitations and capitalizing on opportunities, ePROs can empower patients, enhance communication, and ultimately improve care delivery across the entire cancer care spectrum.

The use of electronic Patient Reported Outcomes in follow-up after palliative radiotherapy: A survey study in Belgium.

Objective: Electronic Patient-Reported Outcome Measures (ePROMs) could be used to monitor patients' symptoms after treatment. However, ePROM implementation in clinical practice has been challenging, especially in (palliative) radiation oncology. The aim of this study was to explore the opinions of healthcare providers (HCP) active in radiation oncology in Belgium on the use of ePROMs for symptom follow-up after palliative radiotherapy. Methods: An anonymous online survey was conducted with different HCP in radiation oncology in Belgium. Participants were recruited through several professional organizations with approximately 390 members actively working in the field of radiation oncology. The survey used was a self-developed questionnaire, based on existing literature on implementation of (e)PROMs in cancer care, our previous research on this topic as well as our personal experience in the field of oncology and palliative care. Results: Of the 128 respondents, 26% had experience with ePROMs in clinical practice. Eighty-four percent considered ePROMs beneficial for patients' health and symptom knowledge, symptom self-management and active participation in care. ePROMs could help HCP to focus on detection of relevant symptoms and improve their management. Almost 75% were willing to implement and use ePROMs. Assigning ePROM introduction and follow-up to a dedicated person, such as a nurse navigator, was suggested to promote ePROM implementation and use in clinical practice. Conclusion: Despite limited experience with ePROMs in clinical care for palliative radiotherapy patients, the majority of respondents is willing to implement and use ePROMs for this particular patient population. Innovation: This is one of the first studies specifically focusing on experiences and opinions of HCP in radiation oncology on the use of ePROMs for symptom follow-up in palliative radiotherapy. HCP should be actively involved in implementation of ePROMs after palliative radiotherapy, to translate their vision of their ideals in practice.

Implementing ePROM in specialist palliative home care: the professionals' perspective - a mixed-methods study.

Background: Over the last decades, patient-reported outcome measures (PROM) have been developed for a better understanding of patient needs. The Integrated Palliative Care Outcome Scale (IPOS) is an internationally recommended PROM in palliative care. The validated electronic version of IPOS (eIPOS) was implemented in four German specialist palliative home care (SPHC) teams for use in everyday clinical practice. Patients reported symptoms and concerns via eIPOS, which were transmitted directly to the electronic patient record of the respective SPHC team. Objectives: The aim of the study was to describe and explore the health care professionals' (HCPs') experiences regarding acceptance and use of eIPOS in clinical practice in SPHC. Design: The mixed-methods sequential explanatory design comprised an anonymized quantitative online survey followed by qualitative focus groups. Methods: The online survey asked in both closed and open questions for HCP's experience with eIPOS. Ambiguous results from the survey were discussed in two focus groups. Survey data were analysed with descriptive and univariable statistics, and the framework approach was used for qualitative data. In a further step, we conducted integrated analysis of quantitative and qualitative results using joint displays. Results: All HCPs of the four SPHC teams (n = 52) were invited to participate. HCPs participating in the survey (n = 32) and the focus groups (n = 7) saw potentials for implementing ePROM in palliative home care - as far as it is technically easy to handle and can be easily integrated into clinical practice. Conclusion: Successful use of ePROMs is affected by the possibility of easy integration into the teams' different structures and processes and the HCPs' perceptions of potentials regarding ePROM use in SPHC. Registration: The study is registered on clinicaltrials.org (NCT03879668).

The use of electronic patient-reported outcome measures in specialist palliative home care: what do professionals think about it? A mixed-methods study Patient-reported outcome measures (PROMs) are short questionnaires developed to assess a patient's health status at a particular point in time. The Integrated Palliative Care Outcome Scale (IPOS) is such a questionnaire, and eIPOS is an electronic version of IPOS. IPOS asks about patients' symptoms and problems when they suffer from advanced diseases. We conducted this study to understand what health care professionals (HCPs) think about electronic PROMs (ePROMs) in palliative home care. We first asked the HCPs to answer questions in an online survey. Then, HCPs discussed the use of eIPOS in small discussion groups. This study design is called 'Mixed-Methods sequential design'. We found that all HCPs used the information they received through eIPOS ­ some frequently and some less often. Many HCPs see potential in using ePROMs to support care. For example, because ePROMs help them to understand patients' symptoms and problems better. However, they also pointed out that eIPOS needs technical improvement. Also, the procedures of eIPOS need to fit into the work routine of the palliative care team. The findings demonstrate the perspectives of HCPs on ePROM. These are valuable to understand how ePROM can be implemented in palliative home care. We can also learn about how to implement other digital tools in other settings of palliative care.

Cancer Care Team's Management of Clinical Alerts Generated by Electronically Collected Patient Reported Outcomes: We Could Do Better.

Electronically administered patient-reported outcome measures (ePROMs) are effective digital health tools for informing clinicians about cancer patients' symptoms and facilitating timely patient-centred care. This paper describes the delivery of healthcare activities supported by the PROMPT-Care model, including ePROMs generated clinical alerts, cancer care team (CCT) response to alerts, and patients' perceptions of the CCT response and ePROMs system. This mixed-methods study includes cancer patients from four cancer therapy centres in New South Wales, Australia. Quantitative and qualitative data were collected regarding clinical alert activity, CCT response, and patient perceptions of the CCT responses and ePROMs system. Qualitative data were thematically analysed. Of the 328 participants whose care was informed by the digital health tool, 70.8% (n = 233) generated at least one alert during the trial period, with 877 alerts generated in total. Although 43.7% (n = 383) were actioned by the CCT, at least 80% of participants found follow-up CCT phone calls beneficial, with multiple benefits confirmed in interviews. The cancer care delivery arm of the PROMPT-Care trial involving clinical alerts to the CCT was positively perceived by most participants, resulting in a diverse range of benefits. However, further work is required, informed by implementation science, to improve the percentage of actioned clinical alerts.

Using ePROMs for follow-up after palliative radiotherapy: An exploratory study with patients and health care providers.

OBJECTIVES: Patients treated with palliative radiotherapy may experience symptoms decreasing their quality of life. Electronic patient-reported outcome measures (ePROMs) could provide an opportunity to follow-up patients after treatment. METHODS: A mixed-method study was performed using self-constructed questionnaires, focus groups and interviews with patients and health care professionals (HCP). A qualitative approach was used to code the data. RESULTS: Forty-two patients, 21 radiation-oncologists, 15 general practitioners (GPs) and 24 home-care nurses completed a questionnaire. Ten patients, 6 radiation-oncologists, 14 GPs and 5 nurses were interviewed or participated in a focus group. Although patients and HCP are satisfied with current care, they believe ePROMs could improve follow-up, communication, continuity of care and self-management of symptoms. An easy to use, versatile ePROM platform seems to be important for successful implementation. Self-care tips and contact information should be added to relevant ePROM-questions, on both physical and psychological symptoms. CONCLUSION: Patients and HCP agree that ePROMs could improve systematical clinical follow-up after palliative radiotherapy, with self-management support being the primary objective of such a system. Practice implications ePROMs after palliative radiotherapy seem feasible, the exact patient population that could benefit the most will need to be explored further; as the palliative population is very diverse.

Impact of clinical symptoms and diagnosis: the electronic Person-Specific Outcome Measure (ePSOM) development programme.

INTRODUCTION: Regulatory bodies recommend that outcome measures used in Alzheimer's disease (AD) clinical trials capture clinically meaningful changes for the trial participant. However, commonly used outcome measures do not reflect the individual's views on what matters to them individually. The aim of the electronic Person-Specific Outcome Measure (ePSOM) programme is to better understand what outcomes matter to patients in early Alzheimer's disease. METHODS: As part of the ePSOM programme, we designed and ran an online study to understand what matters to individuals when developing new treatments for AD. The ePSOM survey ran Aug 2019-Dec 2019 (UK) and collected primarily free text responses which were analysed using Natural Language Processing (NLP) techniques. In this paper, we focus our analyses on individuals who reported having a neurodegenerative disease diagnosis (primarily Mild Cognitive Impairment (MCI) or AD), reporting the most frequent and most important brain health priorities for this group. Due to a small sample size, the Diagnosis group was analysed as a whole. Finally, we compared the Diagnosis group to an age and gender matched control group using chi-squared tests to look for any differences between the Diagnosis and control groups' priorities. RESULTS: The survey was completed by 5808 respondents, of whom 167 (2.9%) (women n = 91, men n = 69, other n = 7) had received one of our pre-defined neurodegenerative disease diagnosis: most commonly MCI n = 52, 1.1% (mean age 69.42, SD = 10.8); or Alzheimer's disease n = 48, 1.0% (mean age 71.24, SD = 9.79). Several thematic clusters were significantly more important for the target diagnostic group, e.g.: Expressing opinions; and less important, e.g., Cognitive Games. CONCLUSION: We conclude there are a range of outcomes which individuals consider important and what potential new treatments should help maintain or improve, suggesting that outcomes that matter shift along the preclinical, prodromal and overt dementia continuum. This has important implications for the development of outcome measures in long term prevention studies that last several years where participants may pass through different stages of disease. In the final stage of our project, we will design an electronic outcomes app which will employ the methodology tested in the large-scale survey to capture what matters to individuals about their brain health at an individual level.

Acceptance of physical activity monitoring in cancer patients during radiotherapy, the GIROfit phase 2 pilot trial.

Background: In radiotherapy the timely identification of patients needing intervention and supportive care due to side effects is an important task especially in the outpatient setting. Activity trackers as an increasingly used lifestyle device may enable physicians to monitor patient's physical activity (PA) and to intervene early during the course of radiotherapy. Objective: The primary aim of this trial was to assess patient acceptance of PA monitoring in an outpatient setting and to correlate changes in PA with toxicity and changes in quality of life. Methods: Patients undergoing radio(chemo-)therapy with a curative intent were eligible to participate in this prospective pilot phase II trial. Patients were instructed to wear a commercially available activity tracker during the course of radiotherapy and four weeks afterwards. Quality of life (QoL) and fatigue was scored using the Functional assessment of Chronic Illness Therapy questionnaire. A linear regression was performed to determine baseline activity and changes in step counts during radiotherapy. Results: We included 23 patients in this trial. Two withdrew consent before the start of treatment, two patients were excluded after prophylactic feeding tube placement and prolonged recovery. Compliance in the remaining 19 patients was high, with availability of step-counts on 92% of the days. Baseline step counts were 6274 for breast cancer patients and 3621 for patients with other entities. Decreasing activity during radiotherapy coincided with the development of side effects and declines in quality of life. Conclusions: Activity trackers as tool to monitor PA during and after radiotherapy were accepted by a majority of the patients included in the current trial. Observed changes in PA correlated with patient reported side effects and QoL in some of the patients.

A UK-Wide Study Employing Natural Language Processing to Determine What Matters to People about Brain Health to Improve Drug Development: The Electronic Person-Specific Outcome Measure (ePSOM) Programme.

BACKGROUND: It is important to use outcome measures for novel interventions in Alzheimer's disease (AD) that capture the research participants' views of effectiveness. The electronic Person-Specific Outcome Measure (ePSOM) development programme is underpinned by the need to identify and detect change in early disease manifestations and the possibilities of incorporating artificial intelligence in outcome measures. OBJECTIVES: The aim of the ePSOM programme is to better understand what outcomes matter to patients in the AD population with a focus on those at the pre-dementia stages of disease. Ultimately, we aim to develop an app with robust psychometric properties to be used as a patient reported outcome measure in AD clinical trials. DESIGN: We designed and ran a nationwide study (Aug 2019 - Nov 2019, UK), collecting primarily free text responses in five pre-defined domains. We collected self-reported clinical details and sociodemographic data to analyse responses by key variables whilst keeping the survey short (around 15 minutes). We used clustering and Natural Language Processing techniques to identify themes which matter most to individuals when developing new treatments for AD. RESULTS: The study was completed by 5,808 respondents, yielding over 80,000 free text answers. The analysis resulted in 184 themes of importance. An analysis focusing on key demographics to explore how priorities differed by age, gender and education revealed that there are significant differences in what groups consider important about their brain health. DISCUSSION: The ePSOM data has generated evidence on what matters to people when developing new treatments for AD that target secondary prevention and therein maintenance of brain health. These results will form the basis for an electronic outcome measure to be used in AD clinical research and clinical practice.

Digital Medicine in Men with Advanced Prostate Cancer - A Feasibility Study of Electronic Patient-reported Outcomes in Patients on Systemic Treatment.

AIMS: Electronic patient-reported outcome (ePRO) measures have the potential to improve patient care, both at an individual level by detecting symptoms and at an organisational level to rationalise follow-up. The introduction of ePROs has many challenges, including funding, institutional rigidity and acceptability for both patients and clinicians. There are multiple examples of successful ePRO programmes but no specific feasibility studies in those who are less digitally engaged. Prostate cancer is predominantly a disease of older men and digital exclusion is associated with increased age. We assessed the feasibility of ePRO completion in older men receiving treatment for advanced prostate cancer both within the clinic and from home. MATERIALS AND METHODS: Men receiving palliative systemic treatment were asked to complete ePROs on a tablet computer in the outpatient department at 0 and 3 months. Participants were also offered optional completion from home. Feasibility was assessed via a mixed methods approach. RESULTS: On-site ePRO completion was acceptable to most patients, with 90% finding it easy or straightforward and 80% preferring electronic over paper. Remote completion was more challenging, even for those who accessed e-mail daily and owned a tablet, with only 20% of participants successfully completing ePROs. Barriers to electronic completion can be categorised as technical, attitudinal and medical. Quality of life and symptom ePRO results were comparable with published data. CONCLUSIONS: On-site completion is achievable in this population with limited staff support. However, remote completion requires further work to improve systems and acceptability for patients. Remote completion is critical to add significantly to current clinical care by detecting symptoms or stratifying follow-up.

Acceptance, Usage, and Barriers of Electronic Patient-Reported Outcomes Among German Rheumatologists: Survey Study.

BACKGROUND: The use of patient-reported outcomes (PROs) allows for patient-centered, measurable, and transparent care. Electronic PROs (ePROs) have many benefits and hold great potential to improve current usage of PROs, yet limited evidence exists regarding their acceptance, usage, and barriers among rheumatologists. OBJECTIVE: This study aims to evaluate the current level of acceptance, usage, and barriers among German rheumatologists regarding the use of ePROs. The importance of different ePRO features for rheumatologists was investigated. Additionally, the most frequently used PROs for patients with rheumatoid arthritis (RA) were identified. METHODS: Data were collected via an online survey consisting of 18 questions. The survey was completed by members of the Working Group Young Rheumatology of the German Society for Rheumatology (Arbeitsgemeinschaft Junge Rheumatologie der Deutschen Gesellschaft für Rheumatologie [DGRh]) at the 2019 annual DGRh conference. Only members currently working in clinical adult rheumatology were eligible to complete the survey. RESULTS: A total of 119 rheumatologists completed the survey, of which 107 (89.9%) reported collecting PROs in routine practice and 28 (25.5%) already used ePROs. Additionally, 44% (43/97) were planning to switch to ePROs in the near future. The most commonly cited reason for not switching was the unawareness of suitable software solutions. Respondents were asked to rate the features of ePROs on a scale of 0 to 100 (0=unimportant, 100=important). The most important features were automatic score calculation and display (mean 77.50) and simple data transfer to medical reports (mean 76.90). When asked about PROs in RA, the respondents listed pain, morning stiffness, and patient global assessment as the most frequently used PROs. CONCLUSIONS: The potential of ePROs is widely seen and there is great interest in them. Despite this, only a minority of physicians use ePROs, and the main reason for not implementing them was cited as the unawareness of suitable software solutions. Developers, patients, and rheumatologists should work closely together to help realize the full potential of ePROs and ensure a seamless integration into clinical practice.

Benefits and Disadvantages of Electronic Patient-reported Outcome Measures: Systematic Review.

BACKGROUND: Patient-reported outcome measures (PROMs) are important in clinical practice and research. The growth of electronic health technologies provides unprecedented opportunities to systematically collect information via PROMs. OBJECTIVE: The aim of this study was to provide an objective and comprehensive overview of the benefits, barriers, and disadvantages of the digital collection of qualitative electronic patient-reported outcome measures (ePROMs). METHODS: We performed a systematic review of articles retrieved from PubMED and Web of Science. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed during all stages. The search strategy yielded a total of 2333 records, from which 32 met the predefined inclusion and exclusion criteria. The relevant ePROM-related information was extracted from each study. RESULTS: Results were clustered as benefits and disadvantages. Reported benefits of ePROMs were greater patient preference and acceptability, lower costs, similar or faster completion time, higher data quality and response rates, and facilitated symptom management and patient-clinician communication. Tablets were the most used ePROM modality (14/32, 44%), and, as a platform, Web-based systems were used the most (26/32, 81%). Potential disadvantages of ePROMs include privacy protection, a possible large initial financial investment, and exclusion of certain populations or the "digital divide." CONCLUSIONS: In conclusion, ePROMs offer many advantages over paper-based collection of patient-reported outcomes. Overall, ePROMs are preferred over paper-based methods, improve data quality, result in similar or faster completion time, decrease costs, and facilitate clinical decision making and symptom management. Disadvantages regarding ePROMs have been outlined, and suggestions are provided to overcome the barriers. We provide a path forward for researchers and clinicians interested in implementing ePROMs. TRIAL REGISTRATION: PROSPERO CRD42018094795; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=94795.

Development and usability testing of an electronic patient-reported outcome measure (ePROM) system for patients with advanced chronic kidney disease.

BACKGROUND: Chronic kidney disease (CKD) is a long-term medical condition associated with symptoms which may negatively impact on patients' health-related quality of life (HRQOL). Patient-reported outcome (PRO) measures or questionnaires may be used to capture symptoms/HRQOL experienced by patients with advanced CKD. METHOD: Two PRO questionnaires were electronically adapted and incorporated in an electronic system developed at University Hospitals Birmingham NHS Foundation Trust (UHB), Birmingham. Usability testing was conducted with patients with advanced CKD. Qualitative methodology was used to elicit participants' views. RESULTS: Participants had a mean age of 64.3 years (range: 36-87 years). All owned electronic devices and had access to the internet. The mean time required to complete the two electronic questionnaires was 15.9 min (range = 8-34 min). Patients who had difficulties with the system were those who had the least experience of using the internet and electronic devices. The average usability and satisfaction score was 4.6 (5-point scale). CONCLUSIONS: Our study suggests that individuals with advanced CKD may find the Renal ePROM system acceptable and easy to use. The use of the Renal ePROM may complement clinician-reported outcomes and assist with the management of patients with advanced CKD.

Brief communication: patient satisfaction with the use of tablet computers: a pilot study in two outpatient home dialysis clinics.

BACKGROUND: Electronic capture of patients' reports of their health is significant in clinical nephrology research because health-related quality of life (HRQOL) for patients with end-stage renal disease is compromised and assessment by patients of their HRQOL in practice is relatively uncommon. OBJECTIVE: The purpose of this study was to evaluate patient satisfaction with and time involved in administering HRQOL and symptom assessment measures using tablet computers in two outpatient home dialysis clinics. DESIGN: A cross-sectional observational study design was employed. SETTING: The study was conducted in two home dialysis clinics. PATIENTS: Fifty-six patients participated in the study; 35 males (63%) and 21 females (37%) with a mean age of 66 ± 12 (36-90 years old) were included. Forty-nine participants were on peritoneal dialysis (87%), 6 on home hemodialysis (11%), and 1 on nocturnal home hemodialysis (2%). MEASUREMENTS: Measures included the Kidney Disease Quality of Life-36 (KDQOL-36), the Edmonton Symptom Assessment Scale (ESAS) and Participant's Level of Satisfaction in Using a Tablet Computer. METHODS: Using a tablet computer, participants completed the three measures. Descriptive statistics and bivariate correlations were calculated. RESULTS: Participants' satisfaction with use of the tablet computer was high; 66% were "very satisfied", 7% "satisfied", 2% "slightly satisfied", and 18% "neutral". On the 7-point Likert-type scale, the mean satisfaction score was 5.11 (SD = 1.6). Mean time to complete the measures was: Level of Satisfaction 1.15 minutes (SD = 0.41), ESAS 2.55 minutes (SD = 1.04), and KDQOL 9.56 minutes (SD = 2.03); the mean time to complete all three instruments was 13.19 minutes (SD = 2.42). There were no significant correlations between level of satisfaction and age, gender, HRQOL, time taken to complete surveys, computer experience, or comfort with technology. Comfort with technology and computer experience were highly correlated, r = .7, p (one-tailed) < 0.01. LIMITATIONS: Limitations include lack of generalizability because of a small self-selected sample of relatively healthy patients and a lack of psychometric testing on the measure of satisfaction. CONCLUSIONS: Participants were satisfied with the platform and the time involved for completion of instruments was modest. Routine use of HRQOL measures for clinical purposes may be facilitated through use of tablet computers.

CONTEXTE: Étant donné la nécessité d'intégrer à la pratique les résultats rapportés par les patients la saisie électronique des rapports de patients au sujet de leur santé est importante. Elle l'est d'autant plus en recherche clinique en néphrologie, en raison du fait que la qualité de vie liée à la santé (QVLS) des patients atteints d'une néphropathie en phase terminale est compromise et que l'évaluation de la QVLS par les patients est relativement peu commune dans la pratique. OBJECTIFS: L'objet de cette étude consistait à sonder la satisfaction des patients relativement à leur QVLS de même qu'au temps requis pour évaluer la QVLS et les symptômes, à l'aide de tablettes électroniques, dans deux cliniques externes de dialyse à domicile. TYPE D'ÉTUDE: Une étude observationnelle transversale. CONTEXTE: Cette étude a été menée dans deux cliniques de dialyse à domicile. PARTICIPANTS: Cinquante-six patients ont participé à cette étude. dont 35 hommes (63%) et 21 femmes (37%) âgés en moyenne de 66 ± 12 (36 à 90 ans). Quarante-neuf participants étaient en dialyse péritonéale (87%), 6 étaient en hémodialyse à domicile (11%), et 1 était en hémodialyse nocturne à domicile (2%). MESURES: Les outils d'évaluation étudiés comprenaient la KDQOL-36 (qualité de vie des patients atteints de néphropathie-36) l'échelle d'évaluation des symptômes d'Edmonton (EESE), ainsi qu'une échelle de satisfaction des participants dans l'utilisation de tablettes électroniques. MÉTHODES: À l'aide de tablettes électroniques les participants ont effectué les trois mesures. On a calculé la statistique descriptive et les corrélations entre deux variables. RÉSULTATS: Le degré de satisfaction des participants quant à l'utilisation des tablettes électroniques était élevé 66% se sont dits « très satisfait ¼ 7% « satisfait ¼, 2% « plutôt satisfait ¼, et 18% « neutre ¼. Sur une échelle de type Likert en 7 points, le degré de satisfaction moyen était de 5,11 (ÉT = 1,06). Le temps moyen requis pour effectuer les mesures était : Degré de satisfaction 1,15 minute (ÉT = 0,41), EESE 2,55 minutes (ÉT = 1,04), et KDQOL 9,56 minutes (ÉT = 2,03). le temps moyen pour effectuer les trois mesures était : 13,19 minutes (ÉT = 2,42). Il n'existe aucune corrélation importante entre le degré de satisfaction et l'âge le sexe, la QVLS, le temps requis pour terminer les évaluations, l'expérience en informatique ou le degré de confort avec la technologie. Il existe une forte corrélation entre le degré de confort avec la technologie et l'expérience en informatique, r = 0,7, p (unilatéral) < 0,01. LIMITES DE L'ÉTUDE: Les limites comprennent un manque de généralisabilité en raison du petit volume de l'échantillon dont les participants étaient autosélectionnés parmi des patients relativement sains, de même que l'absence de tests psychométriques sur le degré de satisfaction. CONCLUSION: Les participants étaient satisfaits de la plateforme et du fait que le temps requis pour terminer les évaluations était modeste. Le recours régulier à des mesures de la QVLS à des fins cliniques pourrait être facilité par l'utilisation des tablettes électroniques. La facilité de collecte de données pourrait offrir des occasions de recourir aux données de QVLS dans le cadre des soins aux patients et dans les programmes d'amélioration de la qualité.