scholarly journals The development of an ePRO software application supporting patient-clinician interaction in chronic HIV care. (Preprint)

2021 ◽  
Author(s):  
Susan HERRMANN ◽  
Brad POWER ◽  
Amineh RASHIDI ◽  
Mark CYPHER ◽  
Renae DESAI ◽  
...  
Keyword(s):  
Qualitative Research ◽  
Controlled Trial ◽  
Clinical Care ◽  
Hiv Care ◽  
Medical Psychology ◽  
Agile Development ◽  
Software Platform ◽  
Multimedia Software ◽  
Patient Reported ◽  
Fit For Purpose

BACKGROUND The systematic collection of Patient Reported Outcome (PRO) data is uncommon outside of clinical trials but promises great utility in the management of chronic illness. Qualitative research and gamification methodologies have an important role to play in the development of ehealth software to ensure that it is fit for purpose, and ensure its longevity in quality, patient-centered care. Our aim was to design and test a multimedia software platform that could be used to increase focus on health-related quality of life (HRQL) issues in HIV-management. OBJECTIVE We aimed to develop a digital platform to facilitate the use of PROs in the context of chronic HIV infection by setting the following objectives: (1) Design a web-accessible software platform compatible with smartphone, tablet, desk/laptop screens; (2) Assess comprehension of the platform, and perceived benefits; (3) Assess the usability of designed product; and (4) conduct a pilot study using PRO instruments integrated into the platform. We were an interdisciplinary Australian/French team with medical, psychology, IT and digital communications expertise; and the study was conducted in both countries with the team holding regular teleconferences over the course of the study. METHODS Seventy-nine patients and 32 doctors in France and Australia contributed to the design of the software by a multidisciplinary team based in the two countries. We used agile development principles, User-Centred Design, and qualitative research methods to develop and pilot the software platform. Following extensive consultation, using a prototype application to determine acceptability of the software, we piloted the final version with 41 Australian and 19 French residents using two validated electronic questionnaires, the DASS-21 inventory and a PRO instrument, the PRO-QOL HIV. RESULTS Testing of the prototype demonstrated that patients wanted an application that was intuitive and without excessive instruction so it felt effortless to use. It should be secure and able to be used discreetly. Clinicians wanted the PRO data synthesized, presented clearly and succinctly, and be actionable. Safety concerns for patients and clinicians included confidentiality of patient information, and the potential for breakdown in communication if insufficient user training was not provided. The final product piloted with patients, showed that most found the application easy to use, and comprehend. The useability testing survey administered found older Australians older had reduced scores for understanding the visual interface (p=0.004) and finding the ‘buttons’ organised, p=0.02. At least three-quarters of respondents were concerned with confidentiality, and this result was more prevalent in participants with higher anxiety and stress scores, as measured by the DASS inventory (p=0.007 and p=0.01 respectively). But these observations were not seen in the 15 French patients who completed the same questionnaire. CONCLUSIONS Digital applications in health are becoming increasingly common but they should be safe and fit for purpose. Our software was developed following intense engagement with potential users in two countries. The next stage is to conduct a randomized controlled trial to determine if patients experience increased satisfaction with care; and doctors perceive they deliver better clinical care, and without an efficiency impost.

scholarly journals Precision-Exercise-Prescription in patients with lung cancer undergoing surgery: rationale and design of the PEP study trial

BMJ Open ◽  
2018 ◽  
Vol 8 (12) ◽  
pp. e024672 ◽  
Author(s):  
Cornelia M Ulrich ◽  
Caroline Himbert ◽  
Kenneth Boucher ◽  
David W Wetter ◽  
Rachel Hess ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Problem Solving ◽  
Exercise Intervention ◽  
Exercise Prescription ◽  
Controlled Trial ◽  
Clinical Care ◽  
Intervention Group ◽  
Exercise Programme ◽  
Behavioural Treatment ◽  
Patient Reported

IntroductionLung cancer is a significant burden on societies worldwide, and the most common cause of death in patients with cancer overall. Exercise intervention studies in patients with lung cancer have consistently shown benefits with respect to physical and emotional functioning. However, to date, exercise training has not been consistently implemented into clinical practice given that interventions have been costly and not aligned with clinical care.Methods/designThe Precision-Exercise-Prescription (PEP) study is a prospective randomised controlled trial comparing the effectiveness and feasibility of a personalised intervention exercise programme among patients with lung cancer undergoing surgery. Two-hundred patients who are diagnosed with stage primary or secondary lung cancer and are eligible to undergo surgical treatment at Huntsman Cancer Institute comprise the target population. Patients are randomised to either the (1) outpatient precision-exercise intervention group or (2) delayed intervention group. The intervention approach uses Motivation and Problem Solving, a hybrid behavioural treatment based on motivational interviewing and practical problem solving. The dosage of the exercise intervention is personalised based on the individual’s Activity Measure for Post-Acute-Care outpatient basic mobility score, and incorporates four exercise modes: mobility, callisthenics, aerobic and resistance. Exercise is implemented by physical therapists at study visits from presurgery until 6 months postsurgery. The primary endpoint is the level of physical function assessed by 6 min walk distance at 2 months postsurgery. Secondary outcomes include patient-reported outcomes (eg, quality of life, fatigue and self-efficacy) and other clinical outcomes, including length of stay, complications, readmission, pulmonary function and treatment-related costs up to 6 months postsurgery.Ethics/disseminationThe PEP study will test the clinical effectiveness and feasibility of a personalised exercise intervention in patients with lung cancer undergoing surgery. Outcomes of this clinical trial will be presented at national and international conferences and symposia and will be published in international, peer-reviewed journals. Ethics approval was obtained at the University of Utah (IRB 00104671).Trial registration numberNCT03306992.

scholarly journals Acceptability of a Patient Portal (Opal) in HIV Clinical Care: A Feasibility Study

2021 ◽  
Vol 11 (2) ◽  
pp. 134
Author(s):  
Dominic Chu ◽  
Tibor Schuster ◽  
David Lessard ◽  
Kedar Mate ◽  
Kim Engler ◽  
...  
Keyword(s):  
Feasibility Study ◽  
Clinical Care ◽  
Health Centre ◽  
Healthcare Providers ◽  
Patient Reported Outcome Measures ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Patient Portal ◽  
Cross Sectional ◽  
Patient Reported

Opal (opalmedapps.com), a patient portal in use at the Cedars Cancer Centre of the McGill University Health Centre (MUHC) (Montreal, Canada), gives cancer patients access to their medical records, collects information on patient-reported outcome measures (PROMs), and has demonstrated patient satisfaction with care. This feasibility study aims to evaluate Opal’s potential acceptability in the context of HIV care. People living with HIV (PLWH) and their healthcare providers (HCPs) completed cross-sectional surveys from August 2019 to February 2020 at large HIV centers, including the Chronic Viral Illness Service of the MUHC, and other HIV clinical sites in Montreal and Paris, France. This study comprised 114 PLWH (mean age 48 years old, SD = 12.4), including 74% men, 24% women, and 2% transgender or other; and 31 HCPs (mean age 46.5 years old, SD = 11.4), including 32% men, 65% women, and 3% other. Ownership of smartphones and tablets was high (93% PLWH, 96% HCPs), and participants were willing to use Opal (74% PLWH, 68% HCPs). Participants were interested in most Opal functions and PROMs, particularly PROMs capturing quality of life (89% PLWH, 77% HCPs), experience of healthcare (86% PLWH, 97% HCPs), and HIV self-management (92% PLWH, 97% HCPs). This study suggests Opal has high acceptability and potential usefulness as perceived by PLWH and HCPs.

Optimizing electronic capture of patient-reported outcome measures in oncology clinical trials: lessons learned from a qualitative study

2020 ◽  
Vol 9 (17) ◽  
pp. 1195-1204
Author(s):  
Florence D Mowlem ◽  
Brad Sanderson ◽  
Jill V Platko ◽  
Bill Byrom
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Lessons Learned ◽  
Structured Interviews ◽  
Patient Reported ◽  
Oncology Clinical Trials ◽  
Anticancer Treatment ◽  
Fit For Purpose ◽  
The Impact ◽  
Electronic Implementation

Aim: To understand the impact of anticancer treatment on oncology patients’ ability to use electronic solutions for completing patient-reported outcomes (ePRO). Materials & methods: Semi-structured interviews were conducted with seven individuals who had experienced a cancer diagnosis and treatment. Results: Participants reported that the following would impact the ability to interact with an ePRO solution: peripheral neuropathy of the hands (4/7), fatigue and/or concentration and memory issues (6/7), where they are in a treatment cycle (5/7). Approaches to improve usability included: larger, well-spaced buttons to deal with finger numbness, the ability to pause a survey and complete at a later point and presenting the recall period with every question to reduce reliance on memory. Conclusion: Symptoms associated with cancers and anticancer treatments can impact the use of technologies. The recommendations for optimizing the electronic implementation of patient-reported outcome instruments in this population provides the potential to improve data quality in oncology trials and places patient needs at the forefront to ensure ‘fit-for-purpose’ solutions.

scholarly journals Enhancing Patient-Provider Communication With the Electronic Self-Report Assessment for Cancer: A Randomized Trial

2011 ◽  
Vol 29 (8) ◽  
pp. 1029-1035 ◽  
Author(s):  
Donna L. Berry ◽  
Brent A. Blumenstein ◽  
Barbara Halpenny ◽  
Seth Wolpin ◽  
Jesse R. Fann ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Clinic Visit ◽  
Self Report ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Control Group ◽  
Cancer Symptoms ◽  
Patient Reported ◽  
Life Issues ◽  
Clinic Visits

Purpose Although patient-reported cancer symptoms and quality-of-life issues (SQLIs) have been promoted as essential to a comprehensive assessment, efficient and efficacious methods have not been widely tested in clinical settings. The purpose of this trial was to determine the effect of the Electronic Self-Report Assessment–Cancer (ESRA-C) on the likelihood of SQLIs discussed between clinicians and patients with cancer in ambulatory clinic visits. Secondary objectives included comparison of visit duration between groups and usefulness of the ESRA-C as reported by clinicians. Patients and Methods This randomized controlled trial was conducted in 660 patients with various cancer diagnoses and stages at two institutions of a comprehensive cancer center. Patient-reported SQLIs were automatically displayed on a graphical summary and provided to the clinical team before an on-treatment visit (n = 327); in the control group, no summary was provided (n = 333). SQLIs were scored for level of severity or distress. One on-treatment clinic visit was audio recorded for each participant and then scored for discussion of each SQLI. We hypothesized that problematic SQLIs would be discussed more often when the intervention was delivered to the clinicians. Results The likelihood of SQLIs being discussed differed by randomized group and depended on whether an SQLI was first reported as problematic (P = .032). Clinic visits were similar with regard to duration between groups, and clinicians reported the summary as useful. Conclusion The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.

scholarly journals Patient Experience in Home Respiratory Therapies: Where We Are and Where to Go

2019 ◽  
Vol 8 (4) ◽  
pp. 555 ◽  
Author(s):  
Cátia Caneiras ◽  
Cristina Jácome ◽  
Sagrario Mayoralas-Alises ◽  
José Ramon Calvo ◽  
João Almeida Fonseca ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Experience ◽  
Clinical Care ◽  
Research Priorities ◽  
Specific Patient ◽  
Quality Healthcare ◽  
Body Of Knowledge ◽  
Number Of Patients ◽  
Patient Reported ◽  
System Sustainability

The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.

scholarly journals The importance of maternal pregnancy vitamin D for offspring bone health: learnings from the MAVIDOS trial

2021 ◽  
Vol 13 ◽  
pp. 1759720X2110069
Author(s):  
Rebecca J. Moon ◽  
Elizabeth M. Curtis ◽  
Stephen J. Woolford ◽  
Shanze Ashai ◽  
Cyrus Cooper ◽  
...  
Keyword(s):  
Vitamin D ◽  
Bone Development ◽  
Controlled Trial ◽  
Clinical Care ◽  
Later Life ◽  
Vitamin D Supplementation ◽  
Public Health Policies ◽  
Positive Effects

Optimisation of skeletal mineralisation in childhood is important to reduce childhood fracture and the long-term risk of osteoporosis and fracture in later life. One approach to achieving this is antenatal vitamin D supplementation. The Maternal Vitamin D Osteoporosis Study is a randomised placebo-controlled trial, the aim of which was to assess the effect of antenatal vitamin D supplementation (1000 IU/day cholecalciferol) on offspring bone mass at birth. The study has since extended the follow up into childhood and diversified to assess demographic, lifestyle and genetic factors that determine the biochemical response to antenatal vitamin D supplementation, and to understand the mechanisms underpinning the effects of vitamin D supplementation on offspring bone development, including epigenetics. The demonstration of positive effects of maternal pregnancy vitamin D supplementation on offspring bone development and the delineation of underlying biological mechanisms inform clinical care and future public-health policies.

scholarly journals A comparison between laterally wedged insoles and ankle-foot orthoses for the treatment of medial osteoarthritis of the knee: A randomized cross-over trial

2021 ◽  
pp. 026921552199363
Author(s):  
Martin Schwarze ◽  
Leonie P Bartsch ◽  
Julia Block ◽  
Merkur Alimusaj ◽  
Ayham Jaber ◽  
...  
Keyword(s):  
Knee Osteoarthritis ◽  
Controlled Trial ◽  
Oxford Knee Score ◽  
Knee Adduction Moment ◽  
Osteoarthritis Of The Knee ◽  
Knee Score ◽  
Medial Knee ◽  
Medial Knee Osteoarthritis ◽  
Patient Reported ◽  
Angular Impulse

Objective: To compare biomechanical and clinical outcome of laterally wedged insoles (LWI) and an ankle-foot orthosis (AFO) in patients with medial knee osteoarthritis. Design: Single-centre, block-randomized, cross-over controlled trial. Setting: Outpatient clinic. Subjects: About 39 patients with symptomatic medial knee osteoarthritis. Interventions: Patients started with either LWI or AFO, determined randomly, and six weeks later changed to the alternative. Main measures: Change in the 1st maximum of external knee adduction moment (eKAM) was assessed with gait analysis. Additional outcomes were other kinetic and kinematic changes and the patient-reported outcomes EQ-5D-5L, Oxford Knee Score (OKS), American Knee Society Clinical Rating System (AKSS), Hannover Functional Ability Questionnaire – Osteoarthritis and knee pain. Results: Mean age (SD) of the study population was 58 (8) years, mean BMI 30 (5). Both aids significantly improved OKS (LWI P = 0.003, AFO P = 0.001), AKSS Knee Score (LWI P = 0.01, AFO P = 0.004) and EQ-5D-5L Index (LWI P = 0.001, AFO P = 0.002). AFO reduced the 1st maximum of eKAM by 18% ( P < 0.001). The LWI reduced both maxima by 6% ( P = 0.02, P = 0.03). Both AFO and LWI reduced the knee adduction angular impulse (KAAI) by 11% ( P < 0.001) and 5% ( P = 0.05) respectively. The eKAM (1st maximum) and KAAI reduction was significantly larger with AFO than with LWI ( P = 0.001, P = 0.004). Conclusions: AFO reduces medial knee load more than LWI. Nevertheless, no clinical superiority of either of the two aids could be shown.

scholarly journals AB0903-HPR DURATION OF TELEPHONE CONSULTATIONS AMONGST RHEUMATOLOGY PRACTITIONERS IN A DISTRICT GENERAL HOSPITAL - ADAPTING TO REMOTE CONSULTATION IN A COVID-19 PANDEMIC

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1474.1-1474
Author(s):  
L. Parker ◽  
F. Coldstream
Keyword(s):  
General Hospital ◽  
Controlled Trial ◽  
Clinical Care ◽  
District General Hospital ◽  
British Society ◽  
Nice Guideline ◽  
Face To Face ◽  
Co Morbidity ◽  
Randomised Controlled ◽  
Remote Consultations

Background:The Covid-19 pandemic has resulted in a rapid adoption of remote consultations in order to limit face to face clinical contact wherever appropriate, as recommended by the British Society for Rheumatology. The same clinic templates which existed for face-to-face encounters have been retrospectively adapted, without consideration of any potential difference in duration of consultations. Rheumatology practitioners from a variety of clinical backgrounds work alongside the rheumatology consultants, providing clinical care to patients with both inflammatory arthritis and connective tissue disease.Objectives:To record the duration of all scheduled telephone consultations carried out by advances rheumatology practitioners in a 4-week period.Methods:All scheduled telephone clinic encounters over a 4-week period were timed and the duration recorded in a spreadsheet. Data was collected in real time by all 8 rheumatology advanced practitioners working within the rheumatology department of a district general hospital, following each clinic episode.Results:Data was recorded from a total of 337 clinic appointments. Of these, 317 (94%) were booked as routine, 3 (0.9%) as urgent, 4 (1.2%) were expedited following an advice line contact, and 13 (3.9%) no data was recorded. 28 (8%) of the patients did not answer when contacted. 80 (24%) clinic appointments lasted 15 minutes or less, 186 (55%) lasted 16 - 30 minutes, 37 (11%) lasted 31 - 45 minutes, and 6 (2%) lasted 46 - 60 minutes. The average duration was 22 minutes.Conclusion:Within this department, remote consultations appear to have a similar duration when compared against the traditional clinic template for a fully face-to-face clinic, with some encounters lasting significantly longer than the planned duration. This would appear to differ to telephone consultations used in other settings, such as general practice where the duration is reportedly shorter1. This may be representative of the additional complexity and co-morbidity of a typical rheumatology patient, or due to the multi-faceted nature of a rheumatology follow-up appointment2. Although remote consultations are effective in limiting risk of exposure to Covid-19, they may not offer a quicker or more efficient service compared with the face-to-face model. Further study in this field is required to evaluate this widely adopted new pattern of working.References:[1]Pinnock H, Bawden R, Proctor S, Wolfe S, Scullion J, Price D, Sheikh A. Accessibility, acceptability, and effectiveness in primary care of routine telephone review of asthma: pragmatic, randomised controlled trial. BMJ. 2003 Mar 1;326(7387):477-9. doi: 10.1136/bmj.326.7387.477. PMID: 12609944; PMCID: PMC150181.[2]National Institute for Health and Care Excellence (NICE) (2018) rheumatoid arthritis in adults: management (NICE Guideline NG100). Available at https://www.nice.org.uk/guidance/ng100 [Accessed 05 January 2021].Disclosure of Interests:None declared

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