Grounds for a New Normal: Integration of Telenephrology in Rural Communities

Patients with kidney disease represent a group of people who are known to have comorbidities, high costs of care, decreased quality of life, and invasive interventions. In rural communities of Western Washington State, many nephrology patients experience factors evidenced to impede access to quality and timely management of their disease, compounding the risk for poor outcomes. Telenephrology is a novel modality of service delivery with the potential to make care more efficient, cost-effective, flexible, and accessible. The author created this project to develop a telenephrology program plan and evaluation for rural settings in Western Washington, informed by relevant epidemiology, pathophysiology, standards of care, and evidence in the literature. As there are a paucity of program plans specific to this service delivery in rural Western Washington, development of this project aims to substantiate the need for evidence-based implementation in this setting. The appraisal of barriers to care for this patient population was used to guide aspects of telenephrology program planning and evaluation to ensure intervention outcomes are equitable. This project provides grounds to support the adoption a new normal for nephrology care and utilizes the existing evidence to inform the planning and evaluating of telenephrology services, implementation processes, budget, and outcomes to assist healthcare providers and their institutions in successful integration of telenephrology in rural communities of Western Washington State

Using electronic patient-reported outcomes to promote quality of care and safety in the management of patients with end stage kidney disease requiring treatment with haemodialysis

Patients with Chronic Kidney Disease (CKD), particularly those with end-stage kidney disease (ESKD) undertaking haemodialysis (HD), often experience a high symptom burden and diminished health-related quality of life. Data on these constructs can be collected directly from patients and measured using electronic patient-reported outcomes (ePROs). Responses can be used at an individual level to facilitate optimal care and improve shared decision making; research from other clinical settings suggests ePROs use can improve clinician/patient communication, improve health related quality of life, reduce hospitalisations, and increase overall survival, while demonstrating cost effectiveness. At an aggregate level, these data can be used for audit and benchmarking to improve services. However, ePROs have not been implemented routinely and systematically in kidney care settings. The overall aim of this thesis was to explore and inform the evidence on how ePROs might be used to promote quality of care and safety in the management of patients with ESKD requiring treatment with HD. Firstly, a synthesis of current evidence on the use and implementation of PROs for patients with ESKD receiving HD was undertaken; identifying gaps in the evidence base and areas for investigation to deliver a roadmap for increasing the evidence base and introducing ePROs into mainstream HD clinical practice. Informed by these findings, a qualitative study was conducted, exploring the views, perceptions, and experiences of 22 patients receiving HD and 17 health care professionals (HCPs) in the HD multi-disciplinary team regarding the collection and use ePROs, in HD settings. This study highlighted the need to measure outcomes important to both patients and clinicians and supported the relevance of patient-reported outcomes included in HD-specific core outcome sets (COS). The study stressed the importance of building an empirical evidence base to support the use of ePROs and discussed key contextual implementation factors, including barriers and facilitators, to successful integration into clinical workflow. Leading on from this was a study to examine whether currently available patient-reported outcome measures (PROMs) used in HD adequately cover outcomes/domains recommended in HD-specific COS. A systematic search of published literature identified two HD-specific COS designed for use in HD research and routine clinical care and 46 validated PROMs currently being used in HD settings. Following assessment of COS coverage and measure characteristics, options for measure choice were outlined. Finally, to gain a deeper understanding of how ePROs might be successfully implemented, a mixed methods study was undertaken to comprehensively identify ePRO systems for CKD to explore system characteristics including methods of administration, levels of integration into existing workflow and electronic health records (EHR) and the reporting of ePROs to manage patient safety. Overall, 15 ePRO systems were identified allowing a comprehensive classification of core factors which contribute to successful implementation of ePROs in nephrology, including common facilitators and barriers. To conclude, this thesis describes the current and potential use of ePROs in CKD, with a focus on use in haemodialysis (HD) populations. It draws together a range of original research, including views on potential measures, existing and emerging ePRO systems and priority areas for future research to outline a roadmap to use ePROs to improve the quality of care delivered to patients with ESKD undergoing HD

Routine self-reporting of symptoms and side effects during cancer treatment: The patient’s perspective

Introduction There has been a dramatic increase in web-based systems developed to support patients to report/manage cancer treatment side effects (ePROM systems). However, little is known about processes underpinning patient engagement and impact on experience. Aims To explore the patient perspective on using ePROM systems during chemotherapy. Mixed methods Preliminary work Interviews (n=87) and questionnaires (n=40) explored patient experience of chemotherapy and indicated that difficulty deciding when to seek medical support during treatment was common. Field usability testing of eRAPID (n=12) indicated potential to support patients but variable engagement. A systematic review of ePROM systems (n=41) indicated a scarcity of robust evidence with few RCTs, with patient engagement and psychosocial outcomes such as self-efficacy not routinely explored or assessed. Main studies Qualitative and quantitative evaluation of patient engagement/experience was integrated into an RCT to evaluate eRAPID (n=354). Engagement was evaluated by weekly symptom reports and use of website. Validated measures assessed impact of eRAPID on self-efficacy to manage side effects (CSES) and cope with cancer (CBI-B), and patient activation (PAM). Relationships between outcomes and engagement were explored. A subset of patients were interviewed (n=23) to explore patient engagement/experience. Triangulation techniques were used to compare and contrast findings. Results Engagement was generally high with few barriers to use reported. One of the main motivators for sustained patient engagement was providing information to clinicians for use in consultations. Patients reported eRAPID provided psychological benefits and improved care. There was a positive impact of eRAPID on CSES (p=.015) but not CBI-B or PAM. Engagement was a significant predictor of improvement in CSES (p<.001) and CBI-B (p<.01) but not PAM. Conclusion ePROM systems have potential to improve patients experience of chemotherapy. Further exploration using qualitative and quantitative assessments is needed to provide insights into motivators and barriers. Clinician engagement is intertwined with patient engagement and requires ongoing assessment to inform future development and implementation

An Online Self-Assessment Platform for Community-Dwelling Stroke Survivors: Development and Acceptability

Background: Activity limitation and participation restriction are common in stroke survivors. Digital health technologies are widely utilised to enable self-management. An online platform, specifically developed for stroke survivors can improve the use of electronic Patient-Reported Outcome Measures (ePROM) to enable self-assessment and empower patients to get involved in their care. The overall aim of this PhD was to develop and test the acceptability of an online self-assessment platform, the Stroke Survivors Hub (SSHUB) to support the long-term self-management of stroke survivors. Methods: A systematic review was conducted to explore existing disease-specific PROM to assess daily activity limitations in stroke survivors. This informed the development of the Evaluation of Daily Activity Questionnaire for stroke survivors (EDAQ-SS) with the involvement of 10 stroke survivors and 11 experts. Content validity of the EDAQ-SS was evaluated using the International Classification of Functioning (ICF) Core Set for Stroke. Following this, the EDAQ-SS was digitised as an ePROM and the SSHUB was developed. The SSHUB acceptability was tested with stroke survivors (n=57). Additionally, data collected via the eEDAQ-SS were used to explore patterns of activity limitation and participation restriction in British stroke survivors.Findings: The EDAQ-SS is an appropriate, comprehensive, understandable and relevant PROM to assess the extent of activity limitation and participation restriction in British stroke survivors, and the first stroke specific PROM to differentiate between capacity and performance. The SSHUB is a user-friendly and acceptable online platform to aid self-assessment of stroke survivors’ ability to carry our daily activities and aggregated data provide opportunities to examine the frequency and pattern of these difficulties in community-dwelling stroke-survivors. Conclusion: The EDAQ-SS is an acceptable measure of daily activities for stroke survivors, and freely available on the SSHUB to inform self-management. Future recommendations include the psychometric testing of the EDAQ-SS with a larger sample to establish the measurement validity and reliability, and the strategies to expand the remit of the SSHUB as an online self-management platform

Using patient-reported outcome measures during the management of patients with end-stage kidney disease requiring treatment with haemodialysis (PROM-HD): a qualitative study

Objectives Patients undergoing haemodialysis report elevated symptoms and reduced health-related quality of life, and often prioritise improvements in psychosocial well-being over long-term survival. Systematic collection and use of patient-reported outcomes (PROs) may help support tailored healthcare and improve outcomes. This study investigates the methodological basis for routine PRO assessment, particularly using electronic formats (ePROs), to maximise the potential of PRO use, through exploration of the experiences, views and perceptions of patients and healthcare professionals (HCPs) on implementation and use of PROs in haemodialysis settings. Study design Qualitative study. Setting and participants Semistructured interviews with 22 patients undergoing haemodialysis, and 17 HCPs in the UK. Analytical approach Transcripts were analysed deductively using the Consolidated Framework for Implementation Research (CFIR) and inductively using thematic analysis. Results For effective implementation, the potential value of PROs needs to be demonstrated empirically to stakeholders. Any intervention must remain flexible enough for individual and aggregate use, measuring outcomes that matter to patients and clinicians, while maintaining operational simplicity. Any implementation must sit within a wider framework of education and support for both patients and clinicians who demonstrate varying previous experience of using PROs and often confuse related concepts. Implementation plans must recognise the multidimensionality of end-stage kidney disease and treatment by haemodialysis, while acknowledging the associated challenges of delivering care in a highly specialised environment. To support implementation, careful consideration needs to be given to barriers and facilitators including effective leadership, the role of champions, effective launch and ongoing evaluation. Conclusions Using the CFIR to explore the experiences, views and perceptions of key stakeholders, this study identified key factors at organisational and individual levels which could assist effective implementation of ePROs in haemodialysis settings. Further research will be required to evaluate subsequent ePRO interventions to demonstrate the impact and benefit to the dialysis community