The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design

Hobson, Esther; Baird, Wendy; Partridge, Rebecca; Cooper, Cindy; Mawson, Sue; Quinn, Ann; Shaw, Pamela J.; Walsh, T. F.; Wolstenholme, Daniel; McDermott, Christopher J.

doi:10.1080/21678421.2018.1440408

Cited by 39 publications

(55 citation statements)

References 38 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…As reported in studies of ED visits for other conditions, younger age was associated with recurrent ED visits . Recurrent ED use may reflect suboptimal access to community healthcare and supports, lack of access to specialty care, lack of care integration, lack of respite, and inexperience of general practitioners with this disease . From our data, we can conclude that strategies are needed urgently to improve community and social supports for children with NMD and their families.…”

Section: Discussionsupporting

confidence: 69%

Respiratory health service utilization of children with neuromuscular disease

Rose

McKim

Leasa

et al. 2018

Pediatric Pulmonology

View full text Add to dashboard Cite

In this population-based study of children with NMD, healthcare utilization for respiratory complications was considerable. Frequency of respiratory specialist consultation, monitoring of respiratory function and sleep disordered breathing was variable but on average reflected professional society recommendations. Children with NMD are frequent ED users suggesting a need to improve community and social supports. We did not detect reduced access to respiratory monitoring or specialist consultation in adolescents transitioning to adult services.

show abstract

Section: Discussionsupporting

confidence: 69%

Respiratory health service utilization of children with neuromuscular disease

Rose

McKim

Leasa

et al. 2018

Pediatric Pulmonology

View full text Add to dashboard Cite

show abstract

“…After adjusting for multiple factors, patients with ALS/MND were the highest users of the emergency department among our cohort. Reasons for high use of emergent care likely include lack of access to speciality care, lack of care integration, lack of respite and inexperience of general practitioners with this disease [37,38]. From our data, we can conclude that strategies are needed urgently to improve community and social supports for all patients with NMD that minimise emergent healthcare utilisation, but particularly those with ALS/MND.…”

Section: Discussionmentioning

confidence: 89%

Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study

et al. 2018

View full text Add to dashboard Cite

Our objective was to quantify health service utilisation including monitoring and treatment of respiratory complications for adults with neuromuscular disease (NMD), identifying practice variation and adherence to guideline recommendations at a population level.We conducted a population-based longitudinal cohort study (2003-2015) of adults with NMD using hospital diagnostic and health insurance billing codes within administrative health databases.We identified 185 586 adults with NMD. Mean age 52 years, 59% female. 41 173 (22%) went to an emergency department for respiratory complications on average 1.6 times every 3 years; 14 947 (8%) individuals were admitted to hospital 1.4 times every 3 years. Outpatient respiratory specialist visits occurred for 64 084 (35%) with four visits every 3 years, although substantial variation in visit frequency was found. 157 285 (85%) went to the emergency department (all-cause) almost 4 times every 3 years, 100 052 (54%) were admitted to hospital. Individuals with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) had more emergency department visits compared with other types of NMD (p<0.0001).One-third of adults with NMD received respiratory specialist care at a frequency recommended by professional guidelines, although substantial variation exists. Emergent healthcare utilisation was substantial, emphasising the burden of NMD on the healthcare system and urgent need to improve community and social supports, particularly for ALS/MND patients.

show abstract

“…The information entered into the application is uploaded for immediate review by the multidisciplinary team. Information is displayed for the provider in a clinically useful way, tracking trends in weight, caregiver strain, and other measures over time …”

Section: Asynchronous Telehealth In Alsmentioning

confidence: 99%

The Use of Telehealth to Enhance Care in ALS and other Neuromuscular Disorders

et al. 2020

View full text Add to dashboard Cite

Telehealth has the potential to improve the efficiency of healthcare while reducing the burden on patients and caregivers. Encounters can be synchronous or asynchronous. When used for care of those with amyotrophic lateral sclerosis (ALS) by individual health care providers or by a multidisciplinary team, synchronous telehealth is feasible, acceptable, may produce outcomes comparable to those of in-person care, and is cost effective. Individuals with ALS who use telehealth tend to have lower physical and respiratory function and to live farther from an ALS clinic than those who exclusively attend in-person clinic visits. Asynchronous telehealth can be used as a substitute full multidisciplinary visits, or for remote monitoring of pulmonary function, gait/falls, and speech. Barriers to implementing telehealth on a wider scale include disparities in access to technology and challenges surrounding medical licensure and billing, but these are being addressed. K E Y W O R D S ALS, mHealth, mobile health, telehealth, telemedicine 1 | INTRODUCTION TO TELEMEDICINE AND TELEHEALTH Today's healthcare landscape contains many references to, and examples of, telemedicine and telehealth. Sometimes, these terms are used interchangeably. Generally, telemedicine is defined as a remote interaction between a clinician and a patient. This is the traditional way most people think of telemedicine. Telehealth is the provision of a broader range of services remotely. 1 For patients with neuromuscular diseases, this can include collection of data on clinical measures such as respiratory function, gait, falls, muscle strength, and the rate and quality of speech.Telehealth encounters can be synchronous or asynchronous. In synchronous encounters, information is transmitted in both directions during the same period of time. These can be binary transmissions between patients or caregivers and healthcare providers, or multiperson encounters with other healthcare providers or family members interacting simultaneously. A live videoconference between a patient, his or her caregiver, and a healthcare provider is an example of synchronous telehealth. Asynchronous encounters, also sometimes called the "store and forward" method, occur when information is collected at one time and then forwarded for review at another time. Examples of this include taking photographs, filming videos, or recording medical data (respiratory, cardiac, gait, etc.) at a location remote from the Abbreviations: AAN, American Academy of Neurology; ALS, amyotrophic lateral sclerosis;

show abstract

The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design

Abstract: We describe the benefits of developing a novel digitally enabled service underpinned by participatory design. Future trials must evaluate the feasibility and acceptability of the TiM system within a clinical environment.

Cited by 39 publications

References 38 publications

Respiratory health service utilization of children with neuromuscular disease

Respiratory health service utilization of children with neuromuscular disease

Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study

The Use of Telehealth to Enhance Care in ALS and other Neuromuscular Disorders

Contact Info

Product

Resources

About