Dataset Information

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study.

ABSTRACT:

Objectives

Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.

Design

An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.

Intervention

TiM telehealth plus usual care versus usual care.

Setting

A specialist MND care centre in the UK.

Participants

Patients with MND and their primary informal carers.

Primary and secondary outcome measures

Recruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression.

Results

Recruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention.

Conclusion

A definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM.

Trial registration number

ISRCTN26675465.

SUBMITTER: Hobson EV

PROVIDER: S-EPMC6830633 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study.

Hobson Esther V EV Baird Wendy O WO Bradburn Mike M Cooper Cindy C Mawson Susan S Quinn Ann A Shaw Pamela J PJ Walsh Theresa T McDermott Christopher J CJ

BMJ open 20191022 10

<h4>Objectives</h4>Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.<h4>Design</h4>An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.<h4>Intervention</h4>TiM telehealth plus usual care ...[more]

PMID: 31640993

Similar Datasets

Project description:Rationale & objectiveInnovative models are needed to address significant gaps in kidney care follow-up for acute kidney injury (AKI) survivors.Study designThis quasi-experimental pilot study reports the feasibility of the AKI in Care Transitions (ACT) program, a multidisciplinary approach to AKI survivor care based in the primary care setting.Setting & participantsThe study included consenting adults with stage 3 AKI discharged home without dialysis.InterventionsThe ACT intervention included predischarge education from nurses and coordinated postdischarge follow-up with a primary care provider and pharmacist within 14 days. ACT was implemented in phases (Usual Care, Education, ACT).OutcomesThe primary outcome was feasibility. Secondary outcomes included process and clinical outcomes.ResultsIn total, 46 of 110 eligible adults were enrolled. Education occurred in 18/18 and 14/15 participants in the Education and ACT groups, respectively. 30-day urine protein evaluation occurred in 15%, 28%, and 87% of the Usual Care, Education, and ACT groups, respectively (P < 0.001). Cumulative incidence of provider (primary care or nephrologist) and laboratory follow-up at 14 and 30 days was different across groups (14 days: Usual care 0%, Education 11%, ACT 73% [P < 0.01]; 30 days: 0%, 22%, and 73% [P < 0.01]). 30-day readmission rates were 23%, 44%, and 13% in the Usual Care, Education, and ACT groups, respectively (P = 0.13).LimitationsPatients were not randomly assigned to treatment groups. The sample size limited the ability to detect some differences or perform multivariable analysis.ConclusionsThis study demonstrated the feasibility of multidisciplinary AKI survivor follow-up beginning in primary care. We observed a higher cumulative incidence of laboratory and provider follow-up in ACT participants.Trial registrationClinicalTrials.gov (NCT04505891).Plain-language summaryAbrupt loss of kidney function in hospitalized patients, acute kidney injury (AKI), increases the chances of long-term kidney disease and a worse health care experience for patients. One out of 3 people who experience AKI do not get the follow-up kidney care they need. We performed a pilot study to test whether a program that facilitates structured AKI follow-up in primary care called the AKI in Care Transitions (ACT) program was possible. ACT brings together the unique expertise of nurses, doctors, and pharmacists to look at the patient's kidney health plan from all angles. The study found that the ACT program was possible and led to more complete kidney care follow-up after discharge than the normal approach to care.

Project description:IntroductionLong waiting time is an important barrier to accessing recommended care for low back pain (LBP) in Australia's public health system. This study describes the protocol for a randomised controlled trial (RCT) that aims to establish the feasibility of delivering and evaluating stratified care integrated with telehealth ('Rapid Stratified Telehealth'), which aims to reduce waiting times for LBP.Methods and analysisWe will conduct a single-centre feasibility and pilot RCT with nested qualitative interviews. Sixty participants with LBP newly referred to a hospital outpatient clinic will be randomised to receive Rapid Stratified Telehealth or usual care. Rapid Stratified Telehealth involves matching the mode and type of care to participants' risk of persistent disabling pain (using the Keele STarT MSK Tool) and presence of potential radiculopathy. 'Low risk' patients are matched to one session of advice over the telephone, 'medium risk' to telehealth physiotherapy plus App-based exercises, 'high risk' to telehealth physiotherapy, App-based exercises, and an online pain education programme, and 'potential radiculopathy' fast tracked to usual in-person care. Primary outcomes include the feasibility of delivering Rapid Stratified Telehealth (ie, acceptability assessed through interviews with clinicians and patients, intervention fidelity, appointment duration, App useability and online pain education programme usage) and evaluating Rapid Stratified Telehealth in a future trial (ie, recruitment rates, consent rates, lost to follow-up and missing data). Secondary outcomes include waiting times, number of appointments, intervention and healthcare costs, clinical outcomes (pain, function, quality of life, satisfaction), healthcare use and adverse events (AEs). Quantitative analyses will be descriptive and inform a future adequately-powered RCT. Interview data will be analysed using thematic analysis.Ethics and disseminationThis study has received approval from the Ethics Review Committee (RPAH Zone: X21-0221). Results will be published in peer-reviewed journals and presented at conferences.Trial registration numberACTRN12621001104842.

Project description:Telehealth education has the potential to serve as an important, low-cost method of expanding healthcare worker education and support, especially in rural settings of low- and middle-income countries. We describe an innovative educational strategy to strengthen a long-term health professional capacity building partnership between Guatemalan and US-based partners. In this pilot evaluation, community health nurses in rural Guatemala received customized, interactive education via telehealth from faculty at the supporting US-based institution. Program evaluation of this 10 lecture series demonstrated high levels of satisfaction among learners and instructors as well as knowledge gain by learners. An average of 5.5 learners and 2 instructors attended the 10 lectures and completed surveys using a Likert scale to rate statements regarding lecture content, technology, and personal connection. Positive statements about lecture content and the applicability to daily work had 98% or greater agreement as did statements regarding ease of technology and convenience. The learners agreed with feeling connected to the instructors 100% of the time, while instructors had 86.4% agreement with connection related statements. Instructors, joining at their respective work locations, rated convenience statements at 100% agreement. This evaluation also demonstrated effectiveness with an average 10.7% increase in pre- to posttest knowledge scores by learners. As the global health community considers efficiency in time, money, and our environment, telehealth education is a critical method to consider and develop for health worker education. Our pilot program evaluation shows that telehealth may be an effective method of delivering education to frontline health workers in rural Guatemala. While larger studies are needed to quantify the duration and benefits of specific knowledge gains and to perform a cost-effectiveness analysis of the program, our initial pilot results are encouraging and show that a telehealth program between a US-based university and a rural community health program in a low- and middle-income country is both feasible and acceptable.

Project description:The motor neuron (MN)–hexamer complex consisting of LIM homeobox 3, Islet-1, and nuclear LIM interactor is a key determinant of motor neuron specification and differentiation. To gain insights into the transcriptional network in motor neuron development, we performed a genome-wide ChIP-sequencing analysis and found that the MN–hexamer directly regulates a wide array of motor neuron genes by binding to the HxRE (hexamer response element) shared among the target genes. Interestingly, STAT3-binding motif is highly enriched in the MN–hexamer–bound peaks in addition to the HxRE. We also found that a transcriptionally active form of STAT3 is expressed in embryonic motor neurons and that STAT3 associates with the MN–hexamer, enhancing the transcriptional activity of the MN–hexamer in an upstream signal-dependent manner. Correspondingly, STAT3 was needed for motor neuron differentiation in the developing spinal cord. Together, our studies uncover crucial gene regulatory mechanisms that couple MN–hexamer and STAT-activating extracellular signals to promote motor neuron differentiation in vertebrate spinal cord. To explain our experimental scheme briefly, we are interested in finding target sites for the dimer of transcription factors Isl1 and Lhx3. To mimic the biological activity of Isl1/Lhx3 dimer, we made Isl1-Lhx3 fusion and found that Isl1-Lhx3 has a potent biological activity in multiple systems (i.e. generation of ectopic motor neurons). Then we made ES cell line that induces Flag-tagged Isl1-Lhx3 expression upon Dox treatment. These *mouse* ES cells differentiate to motor neurons (iMN-ESCs) when treated with Dox following EB formation. To identify genomic binding sites of Isl1-Lhx3 (Flag-tagged), we performed ChIP with Flag antibody (pull down of Flag-Isl1-Lhx3) in ES cells treated with Dox. ChIP with Flag antibody in ES cells treated with vehicle (no Dox) was done as a negative control in parallel, and sequenced along with +Dox sample. We have done these experiments twice (two sets).

Dataset Information

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study.

Objectives

Design

Intervention

Setting

Participants

Primary and secondary outcome measures

Results

Conclusion

Trial registration number

Publications

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets