Self-management Advice Research Articles

Characteristics and Practice Patterns of U.S. Veterans Health Administration Doctors of Chiropractic: A Cross-sectional Survey

ObjectiveThe purpose of this study was to survey U.S. Veterans Health Administration (VA) chiropractors to assess current demographic and professional characteristics, including practice parameters, interprofessional collaboration, academic experience, and scholarly activity. MethodsA cross-sectional survey was performed from August 21, 2019, to September 6, 2019, including all chiropractors identified with any VA appointment. REDCap software was used to conduct the survey. Data from surveys were exported to Microsoft Excel for data analysis. ResultsOf the 177 providers solicited, 118 returned completed surveys (67% response rate). Respondents predominantly self-reported as white (84%) and male (77.1%), with a mean age of 47 years, and reported spending at least 75% of time on clinical care. Most respondents reported being VA employees (96%) with full-time appointments (94%). Approximately half reported having prior hospital training (48%), supervising chiropractic students (53%) and students in other health professions (47%), and authoring or coauthoring ≥1 peer-reviewed publications (42%). Respondents reported performing an average of 6 to 15 new-patient consultations and 31 to 60 follow-up visits per week. Most patient referrals to chiropractic care originated from primary care providers, with low back conditions without radiculopathy as the most frequently seen condition. Diversified manipulation and flexion-distraction techniques, along with myofascial therapies, therapeutic exercises, and self-management advice, were the most commonly reported interventions. ConclusionWe report provider and practice characteristics from chiropractors working in a large, integrated health care system. Most are full-time employees, work in physical medicine departments, and have held their position for up to 5 years. The majority of respondents report diagnostic and treatment approaches concordant with current clinical practice guidelines.

Evaluating Community-Facing Virtual Modalities to Support Complex Neurological Populations During the COVID-19 Pandemic: Protocol for a Mixed Methods Study.

BackgroundThe COVID-19 pandemic and concomitant governmental responses have created the need for innovative and collaborative approaches to deliver services, especially for populations that have been inequitably affected. In Alberta, Canada, two novel approaches were created in Spring 2020 to remotely support patients with complex neurological conditions and rehabilitation needs. The first approach is a telehealth service that provides wayfinding and self-management advice to Albertans with physical concerns related to existing neurological or musculoskeletal conditions or post-COVID-19 recovery needs. The second approach is a webinar series aimed at supporting self-management and social connectedness of individuals living with spinal cord injury.ObjectiveThe study aims to evaluate the short- and long-term impacts and sustainability of two virtual modalities (telehealth initiative called Rehabilitation Advice Line [RAL] and webinar series called Alberta Spinal Cord Injury Community Interactive Learning Seminars [AB-SCILS]) aimed at advancing self-management, connectedness, and rehabilitation needs during the COVID-19 pandemic and beyond.MethodsWe will use a mixed-methods evaluation approach. Evaluation of the approaches will include one-on-one semistructured interviews and surveys. The evaluation of the telehealth initiative will include secondary data analyses and analysis of call data using artificial intelligence. The evaluation of the webinar series will include analysis of poll questions collected during the webinars and YouTube analytics data.ResultsThe proposed study describes unique pandemic virtual modalities and our approaches to evaluating them to ensure effectiveness and sustainability. Implementing and evaluating these virtual modalities synchronously allows for the building of knowledge on the complementarity of these methods. At the time of submission, we have completed qualitative and quantitative data collection for the telehealth evaluation. For the webinar series, so far, we have distributed the evaluation survey following three webinars and have conducted five attendee interviews.ConclusionsUnderstanding the impact and sustainability of the proposed telehealth modalities is important. The results of the evaluation will provide data that can be actioned and serve to improve other telehealth modalities in the future, since health systems need this information to make decisions on resource allocation, especially in an uncertain pandemic climate. Evaluating the RAL and AB-SCILS to ensure their effectiveness demonstrates that Alberta Health Services and the health system care about ensuring the best practice even after a shift to primarily virtual care.International Registered Report Identifier (IRRID)DERR1-10.2196/28267

Twitter Users' Views on Mental Health Crisis Resolution Team Care Compared With Stakeholder Interviews and Focus Groups: Qualitative Analysis.

BackgroundAnalyzing Twitter posts enables rapid access to how issues and experiences are socially shared and constructed among communities of health service users and providers, in ways that traditional qualitative methods may not.ObjectiveTo enrich the understanding of mental health crisis care in the United Kingdom, this study explores views on crisis resolution teams (CRTs) expressed on Twitter. We aim to identify the similarities and differences among views expressed on Twitter compared with interviews and focus groups.MethodsWe used Twitter’s advanced search function to retrieve public tweets on CRTs. A thematic analysis was conducted on 500 randomly selected tweets. The principles of refutational synthesis were applied to compare themes with those identified in a multicenter qualitative interview study.ResultsThe most popular hashtag identified was #CrisisTeamFail, where posts were principally related to poor quality of care and access, particularly for people given a personality disorder diagnosis. Posts about CRTs giving unhelpful self-management advice were common, as were tweets about resource strains on mental health services. This was not identified in the research interviews. Although each source yielded unique themes, there were some overlaps with themes identified via interviews and focus groups, including the importance of rapid access to care. Views expressed on Twitter were generally more critical than those obtained via face-to-face methods.ConclusionsTraditional qualitative studies may underrepresent the views of more critical stakeholders by collecting data from participants accessed via mental health services. Research on social media content can complement traditional or face-to-face methods and ensure that a broad spectrum of viewpoints can inform service development and policy.

Physical Therapy Management of Low Back Pain: A Survey of Physiotherapists' Current Assessment and Treatment Practices.

Purpose: The purpose of this study was to determine current physiotherapy practice for managing chronic low back pain (LBP). Method: We administered a cross-sectional survey to all physiotherapists working in Eastern Health (EH) Regional Health Authority, Newfoundland and Labrador, by email. To ascertain how physiotherapists assessed and treated patients with LBP, the survey included multiple-choice and open-ended questions, along with case vignettes. We explored the respondents' confidence about implementing all aspects of guideline-based care, as well as their use of treatment outcome measures. Results: A total of 76 physiotherapists responded to the survey (84% response rate); 56 (74%) reported that they treated patients with LBP as part of their regular practice. More than half had managed LBP for more than 10 years. The most frequently used treatments were self-management advice, followed by home and supervised exercise. The majority of respondents lacked confidence about implementing cognitive-behavioural treatment techniques. The Numeric Pain Rating Scale was the most commonly used outcome measure; disability outcome measures were not frequently used. Conclusions: The majority of LBP management in EH aligns with guideline recommendations. Increased uptake of guidelines recommending assessment and management of LBP using a bio-psychosocial approach will require training and support.

Using the Computer-based Health Evaluation System (CHES) to Support Self-management of Symptoms and Functional Health: Evaluation of Hematological Patient Use of a Web-Based Patient Portal.

BackgroundPatient portals offer the possibility to assess patient-reported outcome measures (PROMs) remotely, and first evidence has demonstrated their potential benefits.ObjectiveIn this study, we evaluated patient use of a web-based patient portal that provides patient information and allows online completion of PROMs. A particular focus was on patient motivation for (not) using the portal. The portal was developed to supplement routine monitoring at the Department of Internal Medicine V in Innsbruck.MethodsWe included patients with multiple myeloma and chronic lymphocytic leukemia who were already participating in routine monitoring at the hospital for use of the patient portal. Patients were introduced to the portal and asked to complete questionnaires prior to their next hospital visits. We used system access logs and 3 consecutive semistructured interviews to analyze patient use and evaluation of the portal.ResultsBetween July 2017 and August 2020, we approached 122 patients for participation in the study, of whom 83.6% (102/122) consented to use the patient portal. Patients were on average 60 (SD 10.4) years old. Of patients providing data at all study time points, 37% (26/71) consistently used the portal prior to their hospital visits. The main reason for not completing PROMs was forgetting to do so in between visits (25/84, 29%). During an average session, patients viewed 5.3 different pages and spent 9.4 minutes logged on to the portal. Feedback from interviews was largely positive with no patients reporting difficulties navigating the survey and 50% of patients valuing the self-management tools provided in the portal. Regarding the portal content, patients were interested in reviewing their own results and reported high satisfaction with the dynamic self-management advice, also reflected in the high number of clicks on those pages.ConclusionsPatient portals can contribute to patient empowerment by offering sought-after information and self-management advice. In our study, the majority of our patients were open to using the portal. The low number of technical complaints and average time spent in the portal demonstrate the feasibility of our patient portal. While initial interest was high, long-term use was considerably lower and identified as the main area for improvement. In a next step, we will improve several aspects of the patient portal (eg, including a reminder to visit the portal before the next appointment and closer PROM symptom monitoring via an onconurse).

P016 When and how to deliver advice about self-management: local observations from the National Early Inflammatory Arthritis Audit

Abstract Background/Aims The National Early Inflammatory Arthritis Audit (NEIAA) provides the opportunity for rheumatology services to benchmark the care they provide against NICE quality standards (QS) 33. During the first year of the audit our focus, after being identified as an outlier, was on improving performance against QS2 and specifically reducing waiting times. This project assessed compliance against QS4: patients with rheumatoid arthritis (RA) are offered educational and self-management activities within 1 month of diagnosis. Methods Data submitted to the NEIAA online tool during the second year of the audit were downloaded for analysis. Results were presented initially to our National RA Society (NRAS) Patient Support Group and then together with feedback from the patients, to the Rheumatology Multi-Disciplinary Team. Driver diagrams were developed and areas for improvement identified. Results In total, 268 patients were recruited to the audit in year 2; 73 (27%) had confirmed RA and were included in this analysis. Follow-up data at 3 months was available for 56 patients (77%). Characteristics were: mean age 58 years (range: 19-88), 47 (64%) female, 34 (47%) working and 11 (15%) smoked. Forty-one patients (56%) started DMARD therapy within 6 weeks of referral. All patients with RA received written information at baseline about their condition. However, only 39 patients (71%) were documented to have been provided with advice about self-management at their 3-month follow-up. Feedback from the NRAS Group highlighted a number of important considerations. Firstly, that information about self-management needs to be given to the patient at the right time. Patients need to be ready to take advice on board and to have come to terms with their diagnosis. For many, trying to do this in the first 3 months of diagnosis was felt too soon. Information needs to be made available in different formats and tailored to the individual. Patients valued speaking to someone with a lived experience and felt this was more powerful than speaking to a healthcare professional to understand about self-management. Driver diagrams highlighted areas for improvement which included the importance of the team agreeing what is meant by self-management, using a patient activation measure to determine if the patient is ready to take on board this information, exploring different formats of delivery and utilising expert patients. Conclusion The NEIAA has again enabled the team to identify further areas for improvement. Involving patients in the discussion has provided a valuable insight into how we look to support our patients to live with their condition. It has also led us to question whether the QS is right to support that self-management advice is offered to patients within 1 month of diagnosis. Disclosure E. MacPhie: Other; EM is the secretary of the North West Rheumatology Club, these regional meetings have been funding by an unrestricted educational grant from UCB and are now sponsored by Abbvie. L. Ashcroft: None. J. Brazendale: None. N. Foreman: None. S. Gilbert: None. C. Greenall: None. S. Horton: None. I. Lewis: None. A. Madan: None. C. Rao: None. S. Fish: None.

Self-management advice, exercise and foot orthoses for plantar heel pain: the TREADON pilot and feasibility randomised trial

BackgroundPlantar heel pain (PHP) is common and impacts negatively on physical function and quality of life. Initial treatment usually comprises analgesia and self-management advice (SMA), with referral to a physiotherapist or podiatrist recommended only when symptoms persist. Systematic reviews highlight limitations of existing evidence for the effectiveness of exercises and orthoses. The objective of the TREADON pilot and feasibility trial was to inform the design of a future main trial to compare the clinical and cost-effectiveness of self-management advice (SMA), individualised exercises and foot orthoses for PHP.MethodsThis was a four-arm randomised feasibility and pilot trial with 12-week follow-up. Adults aged ≥ 18 years with PHP were identified from primary care by general practice consultation, retrospective general practice medical record review or a population survey. Participants were randomised to either (i) SMA, (ii) SMA plus individualised exercises (SMA-exercises), (iii) SMA plus prefabricated foot orthoses (SMA-orthoses) or (iv) SMA plus combined individualised exercises and prefabricated foot orthoses (SMA-combined). Feasibility outcomes were recruitment; retention; intervention adherence, credibility and satisfaction; performance of three potential primary outcome measures (pain numeric rating scale (NRS), Foot Function Index-pain subscale (FFI-pain), Manchester Foot Pain and Disability Index-pain subscale (MFPDI-pain)); and parameters for informing the main trial sample size calculation.ResultsEighty-two participants were recruited. All three identification methods met the target number of participants. Retention at 12 weeks was 67%. All interventions were successfully delivered as per protocol. Adherence (range over 12 weeks 64–100%) and credibility (93%) were highest in the SMA-combined arm. Satisfaction with treatment was higher for the three clinician-supported interventions (SMA 29%, SMA-exercises 72%, SMA-orthoses 71%, SMA-combined 73%). Responsiveness (baseline to 12 weeks) was higher for FFI-pain (standardised response mean 0.96) and pain NRS (1.04) than MFPDI-pain (0.57). Conservative sample size parameter estimates for standard deviation were pain NRS 2.5, FFI-pain 25 and MFPDI-pain 4, and baseline-outcome correlations were 0.5–0.6, 0.4 and < 0.3, respectively.ConclusionsWe demonstrated the feasibility of conducting a future main randomised clinical trial comparing the clinical and cost-effectiveness of SMA, exercises and/or foot orthoses for PHP.Trial registration numberISRCTN 12160508. Prospectively registered 5th July 2016.

Age-Related Disparities in the Quality of Stroke Care and Outcomes in Rehabilitation Hospitals: The Australian National Audit

IntroductionStroke affects all ages. Despite increased incidence in those <65 years, little is known about age-based differences in inpatient rehabilitation management and outcomes. ObjectivesTo investigate management and outcomes, comparing younger (<65 years) and older (≥65 years) patients with stroke, who received inpatient rehabilitation. MethodsMulticentre, cross-sectional study using data from Australian hospitals who participated in the Stroke Foundation national stroke rehabilitation audit (2016-2018). Chi-square tests compared characteristics and care by age. Multivariable regression models were used to compare outcomes by age (e.g. length of stay). Models were adjusted for sex, stroke type and severity factors. Results7,165 audited cases from 127 hospitals; 23% <65 years (66% male; 72% ischaemic stroke). When compared to older patients, younger patients were more likely male (66% vs 52%); identify as Aboriginal or Torres Strait Islander (6% vs 1%); be less disabled on admission; receive psychology (46% vs 34%) input, and community reintegration support, including return to work (OR 1.47, 95% CI 1.03, 2.11), sexuality (OR 1.60, 95% CI 1.39, 1.84) and self-management (OR 1.39, 95% CI 1.23, 1.57) advice. Following adjustment, younger patients had longer lengths of stay (coeff 3.54, 95% CI 2.27, 4.81); were more likely to be independent on discharge (aOR 1.96, 95% CI 1.68, 2.28); be discharged to previous residences (aOR 1.64, 95% CI 1.41, 1.91) and receive community rehabilitation (aOR: 2.27, 95% CI 1.91, 2.70). ConclusionsAge-related differences exist in characteristics, management and outcomes for inpatients with stroke accessing rehabilitation in Australia.

Cultural Identity Conflict Informs Engagement with Self-Management Behaviours for South Asian Patients Living with Type-2 Diabetes: A Critical Interpretative Synthesis of Qualitative Research Studies.

The prevalence of type-2 diabetes (T2D) is increasing, particularly among South Asian (SA) communities. Previous research has highlighted the heterogeneous nature of SA ethnicity and the need to consider culture in SA patients’ self-management of T2D. We conducted a critical interpretative synthesis (CIS) which aimed to a) develop a new and comprehensive insight into the psychology which underpins SA patients’ T2D self-management behaviours and b) present a conceptual model to inform future T2D interventions. A systematic search of the literature retrieved 19 articles, including 536 participants. These were reviewed using established CIS procedures. Analysis identified seven constructs, from which an overarching synthesizing argument ‘Cultural Conflict’ was derived. Our findings suggest that patients reconstruct knowledge to manage their psychological, behavioural, and cultural conflicts, impacting decisional conflicts associated with T2D self-management and health professional advice (un)consciously. Those unable to resolve this conflict were more likely to default towards cultural identity, continue to align with cultural preferences rather than health professional guidance, and reduce engagement with self-management. Our synthesis and supporting model promote novel ideas for self-management of T2D care for SA patients. Specifically, health professionals should be trained and supported to explore and mitigate negative health beliefs to enable patients to manage social-cultural influences that impact their self-management behaviours.

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan

BackgroundA primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease.MethodA systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade).ResultsA total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources.ConclusionsMore targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required.

Service evaluation of a pilot psychology clinic including psychological intervention within a Tier 2 community adult weight management service

Background:Obesity levels in Scotland are amongst the highest in the developing world and psychological co-morbidities are common amongst the obese population. and evidence suggests that psychological approaches, can result in sustained weight loss, improved wellbeing and reduced binge eating. However, there is limited evidence of effective intervention supporting weight outcomes in a general setting.Aim:The aim of this pilot intervention was to determine if the addition of a psychology clinic within a Tier 2 community adult weight management service (CAWMS) supported positive weight management outcomes.Methods:Service evaluation data was gathered at an urban and rural GP practice within Grampian. Patients were referred to the pilot psychology clinic if mild to moderate mental health concerns were highlighted. Eight patients (average age 46 years; mean BMI 46.2) attended between four and eight appointments within the psychology clinic. Progress, goal setting, barriers and relapse prevention were discussed using a motivational interviewing approach. Psycho-education, self-management advice and brief psychological interventions, were offered where appropriate.Results:Mean weight loss for patients who attended the psychology clinic was 7.4kg. Mean HADS anxiety scores did not change, whereas HADS depression scores reduced by 3.5, although not statistically significant (p &gt; 0.001). Qualitative feedback suggests that the majority of patients found the addition of psychological support helpful.Conclusion:The pilot has highlighted the value and importance of a psychology clinic within Tier 2 CAWMS. Feedback from dietitians suggests that the addition of psychological support better informed their understanding of patients concerns. It highlights the need for ‘joined-up’ working within the community weight management service.

From Personalised Predictions to Targeted Advice: Improving Self-Management in Rheumatoid Arthritis.

Rheumatoid arthritis (RA) is a chronic inflammatory autoimmune disease, that can lead to joint damage but also affects quality of life (QoL) including aspects such as self-esteem, fatigue, and mood. Current medical management focuses on the fluctuating disease activity to prevent progressive disability, but practical constraints mean periodic clinic appointments give little attention to the patient's experience of managing the wider consequences of chronic illness. The main aim of this study is to explore how to use patient-derived data both for clinical decision-making and for personalisation, with the first steps towards a platform for tailoring self-management advice to patients' lifestyle changes. As a result, we proposed a Bayesian network model for personalisation and have obtained promising outcomes.

The content and conduct of GP consultations for dermatology problems: a cross-sectional study.

BackgroundSkin complaints are common in primary care, and poor outcomes in long-term conditions are often due to low adherence to treatment. Shared decision making and self-management support may help, yet there is little understanding of patient involvement or the support provided by GPs.AimTo describe the content of primary care consultations for skin problems, including shared decision making practice, delivery of self-management advice, and follow-up.Design and settingCross-sectional study of video-recorded UK adult GP consultations and linked data.MethodA coding tool was developed and applied to all consultations with skin problems. Shared decision making was assessed using the observer OPTION5 scale.ResultsA total of 45/318 consultations (14.2%) related to one or more skin problems, which were discussed alongside other problems in 71.1% (32/45) of consultations. Of the 100 different problems discussed in these consultations, 51 were dermatological. The mean amount of time spent on skin problems in the consultations was 4 minutes 16 seconds. Medication was recommended for 66.7% (34/51) of skin problems, with low shared decision making (mean OPTION5 score = 10.7). Self-management advice (verbal only) was given for 47.1% (24/51) of skin problems. Most skin problems (84.3%; 43/51) were not referred to secondary care; 32.6% (14/43) of the skin problems not referred were seen again in primary care within 12 weeks, of which 35.7% (5/14) follow-up appointments were not planned.ConclusionIn this study, skin problems were usually presented alongside other complaints and resulted in a medication recommendation. Shared decision making was uncommon and self-management advice not consistently given, with re-attendance for the same problem common. GPs’ training should reflect how frequently skin problems are seen and seek to improve patient involvement in decision making and support self-management.

Ambulatory Extended Recovery: Coming to an Operating Theater Near You

Ambulatory Extended Recovery: Coming to an Operating Theater Near You

Managing everyday life: Self-management strategies people use to live well with neurological conditions

ObjectiveThis paper uses the Taxonomy of Everyday Self-management Strategies (TEDSS) to provide insight and understanding into the complex and interdependent self-management strategies people with neurological conditions use to manage everyday life. MethodsAs part of a national Canadian study, structured telephone interviews were conducted monthly for eleven months, with 117 people living with one or more neurological conditions. Answers to five open-ended questions were analyzed using qualitative content analysis. A total of 7236 statements were analyzed. ResultsFindings are presented in two overarching patterns: 1) self-management pervades all aspects of life, and 2) self-management is a chain of decisions and behaviours. Participants emphasized management of daily activities and social relationships as important to maintaining meaning in their lives. ConclusionManaging everyday life with a neurological condition includes a wide range of diverse strategies that often interact and complement each other. Some people need to intentionally manage every aspect of everyday life. Practice implicationsFor people living with neurological conditions, there is a need for health providers and systems to go beyond standard advice for self-management. Self-management support is best tailored to each individual, their life context and the realities of their illness trajectory.

An Exploration of the Rs of Radiobiology in Prostate Cancer.

To explore the four Rs of radiobiology (Repair, Reoxygenation, Reassortment, and Repopulation) as a means to understand the effects of ionising radiation on biological tissue and subsequently as the basis for conventional fractionated treatment schedules. These radiobiological principles will form a rationale for combined regimens in prostate cancer treatment involving androgen deprivation therapy and radiation therapy and the associated toxicities of this approach will be discussed. Electronic databases including CINAHL, MEDLINE, Scopus, professional websites, books and grey literature were searched using Google Scholar. It is important for nurses to understand the four Rs of radiobiology to grasp the effects of ionising radiation on biological tissue as the basis for conventional fractionated treatment schedules in prostate cancer. Men can experience a sequalae of physical and psychological side effects of treatment that can negatively impact quality of life. Men can experience a range of unmet supportive care needs particularly related to informational, sexual, and psychological needs. For men affected by prostate cancer opting for radiation therapy (+/-) androgen deprivation therapy, nurses should ask targeted questions based on the Common Terminology Criteria for Adverse Events related to urinary and bowel function, potency and fatigue, and sexual health. We also recommend the use of holistic needs assessments to tailor self-management care plans. Evidence-based self-management advice should be provided in response to each man's unique needs.

Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease

BackgroundEffective management of patients with chronic kidney disease (CKD) relies on timely detection of clinical deterioration towards end stage kidney failure. We aimed to design an electronic Patient-Reported Outcome Measure (ePROM) system, which would allow patients with advanced CKD (pre-dialysis) to: (i) remotely self-report their symptoms using a simple and secure online platform; (ii) share the data with the clinical team in real-time via the electronic patient record to help optimise care. We adopted a staged development process which included: a systematic review of PROMs used in CKD; formation of a co-design team; prototype system design/development, user acceptance testing and refinement; finalisation of the system for testing in a pilot/feasibility trial.ResultsA co-design team was convened, including patients with lived experience of CKD; clinical team members; IT/Informatics experts; academics; and Birmingham Clinical Trials Unit representatives. A prototype system was developed and iterative changes made before finalisation during a series of operational meetings. The system allows patients to remotely self-report their symptoms; provides tailored self-management advice; allows monitoring of real-time patient ePROM data; sends automated notifications to the patient/clinical team in the advent of a severe symptom report; and incorporates longitudinal ePROM symptom data into the electronic patient record. Feasibility of the system will be evaluated as part of the National Institute for Health Research funded RePROM (Renal electronic Patient-Reported Outcome Measure) pilot trial (ISRCTN12669006).ConclusionsRoutine ePROM collection with real-time feedback has the potential to improve outcomes and reduce health service costs. We have successfully developed a trial-ready ePROM system for advanced CKD, the feasibility of which is currently being explored in a pilot trial. Assuming feasibility is demonstrated, formal evaluation of efficacy will take place in a future multi-centre randomised controlled trial.

Does telephone-delivered exercise advice and support by physiotherapists improve pain and/or function in people with knee osteoarthritis? Telecare randomised controlled trial

ObjectiveEvaluate a physiotherapist-led telephone-delivered exercise advice and support intervention for people with knee osteoarthritis.MethodsParticipant-blinded, assessor-blinded randomised controlled trial. 175 people were randomly allocated to (1) existing telephone service (≥1 nurse...

A real-time electronic symptom monitoring system for patients after discharge following surgery: a pilot study in cancer-related surgery

BackgroundAdvances in peri-operative care of surgical oncology patients result in shorter hospital stays. Earlier discharge may bring benefits, but complications can occur while patients are recovering at home. Electronic patient-reported outcome (ePRO) systems may enhance remote, real-time symptom monitoring and detection of complications after hospital discharge, thereby improving patient safety and outcomes. Evidence of the effectiveness of ePRO systems in surgical oncology is lacking. This pilot study evaluated the feasibility of a real-time electronic symptom monitoring system for patients after discharge following cancer-related upper gastrointestinal surgery.MethodsA pilot study in two UK hospitals included patients who had undergone cancer-related upper gastrointestinal surgery. Participants completed the ePRO symptom-report at discharge, twice in the first week and weekly post-discharge. Symptom-report completeness, system actions, barriers to using the ePRO system and technical performance were examined. The ePRO surgery system is an online symptom-report that allows clinicians to view patient symptom-reports within hospital electronic health records and was developed as part of the eRAPID project. Clinically derived algorithms provide patients with tailored self-management advice, prompts to contact a clinician or automated clinician alerts depending on symptom severity. Interviews with participants and clinicians determined the acceptability of the ePRO system to support patients and their clinical management during recovery.ResultsNinety-one patients were approached, of which 40 consented to participate (27 male, mean age 64 years). Symptom-report response rates were high (range 63–100%). Of 197 ePRO completions analysed, 76 (39%) triggered self-management advice, 72 (36%) trigged advice to contact a clinician, 9 (5%) triggered a clinician alert and 40 (20%) did not require advice. Participants found the ePRO system reassuring, providing timely information and advice relevant to supporting their recovery. Clinicians regarded the system as a useful adjunct to usual care, by signposting patients to seek appropriate help and enhancing their understanding of patients’ experiences during recovery.ConclusionUse of the ePRO system for the real-time, remote monitoring of symptoms in patients recovering from cancer-related upper gastrointestinal surgery is feasible and acceptable. A definitive randomised controlled trial is needed to evaluate the impact of the system on patients’ wellbeing after hospital discharge.

AMTRA: a multicentered experience of a web-based monitoring and tailored toxicity management system for cancer patients.

Technology-based interventions are increasingly being introduced in routine clinical cancer care. There is a need for reliable systems to monitor treatment-related toxicity in a standardized manner. Such electronic tools bridge the gap in providing quality home-based monitoring. From July 2017 to December 2017, we performed a multicentered, non-randomized prospective cohort analysis with patients who were receiving routine chemotherapy for various solid tumors, using a web-based patient-reported toxicity registration, management, and intervention system called AMTRA (ambulatory Monitoring of cancer Therapy using an interactive Application) linked to the homecare nursing organization Remedus®. Twelve common toxicities plus pain and two biometrics could be registered daily or more frequently as required. These were processed centrally to generate tailored advice for lesser symptoms or a phone call from a dedicated nurse in case of severe or prolonged toxicity. A compliance tool to monitor oral therapies was incorporated in the system. One hundred sixty-eight patients (92%) were enrolled, with 31,514 registrations analyzed. One hundred eight patients reported severe toxicity (> 1461 registrations), resulting in 102 clinical interventions ranging from self-management advice, supplemental consultations to hospitalizations. Compliance to oral chemotherapy was high using AMTRA with a median of 98.7% (95 confidence interval (CI) [93.5-100.0%]). Seventy-nine percent of patients stated that the availability of AMTRA self-reports was useful in communication with the care provider, while 75% felt more in control while managing their treatment. The application of an interactive PRO-system in routine symptom management of cancer patients allowed standardized documentation of toxicities and recorded a high compliance with oral treatment. It allows for rapid interaction for toxicities and cancer-related symptoms experienced at home.