Exploration of Hand Therapy-Online system at the Adult EB Service
Research type
Research Study
Full title
Tele hand care: an exploratory study of implementing a Hand Therapy-online system into routine care at the Adult Epidermolysis Bullosa Service, GSTT
IRAS ID
254214
Contact name
Patricia Grocott
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 1 months, 30 days
Research summary
Research Summary\n\nEpidermolysis Bullosa (EB) is a group of genetic conditions causing extensive, painful skin blisters and wounds. Four main types of EB are recognised, which all affect the hands but those patients usually requiring hand therapy interventions have Recessive Dystrophic EB (RDEB). The Generation and evaluation of hand therapy devices for Epidermolysis Bullosa (GLOVE) project used a co-design methodology with patients with RDEB, their families and clinicians to develop a dressing glove and prototype splint glove to manage blisters, wounds and contractures. The Hand Therapy-Online (HTO), a digital clinical data collection and assessment system for the hands was another of the co-designed products. The system was piloted and validated in the GLOVE project.\n\nAn objective of the GLOVE project is to implement the HTO system at the Adult EB service, GSTT for patients with all types of EB who require hand therapy. This study will first explore the acceptability of the HTO system with users and proposed adoption at the EB service.\n\nAcceptability and adoption are two of eight implementation outcomes that act as indicators of implementation success (Proctor et al 2010). The research study will take place from June 2019 to end of August 2019 and will involve 1 x 45 minutes semi-structured interview with patients with EB and their hand therapy clinicians, and clinical managers at the Adult EB service, GSTT. This will include exploring the potential value and acceptability of a model of care based on remote monitoring and early intervention via the HTO system. Given such adoption will require patient users to record their data and clinicians to monitor and contact patients in the event of deteriorations, the acceptability and practicality of the new model needs to be established before adoption can take place.\n\nThe research will build on the findings from the associated HTO Service Evaluation at the EB service.\n\nSummary of Results\n\nThe study was an addition to a Service Evaluation of the Hand Therapy-online system in routine care. We wanted to understand the experiences of using the system from patient and clinician viewpoints.\nWe experienced difficulties in recruiting patients and clinicians to be interviewed to ascertain their experiences. This was in part due to fitting interviews into patients’ schedules during clinic visits. Given the small population of patients with Epidermolysis Bullosa registered with the Hand Therapy Service at the Trust, clinician experiences of using the System was confined to two hand therapists.\nThe COVID-19 pandemic interrupted the Hand Therapy Service for people living with EB. Two members of staff who worked with the System and were Co-Investigators on the projects left the Trust.\nIn terms of the feedback we did receive, patient experiences were in the main positive. They found the system easy to use. Whilst recording their outcomes post surgery for example, the experience of tracking recovery was positive. However recording deterioration in hand function over time was demoralising. Given Epidermolysis Bullosa is an incurable condition, this is an important finding to guide future initiatives regarding the use of a Tele Hand Care system in routine practice and care.\nClinician experience was positive in terms of having an easy to use system, which collected all the data needed for hand therapy in one place.
REC name
North of Scotland Research Ethics Committee 2
REC reference
19/NS/0117
Date of REC Opinion
3 Jul 2019
REC opinion
Favourable Opinion