Abstract
BackgroundRemote measurement technology (RMT), including the use of mobile phone apps and wearable devices, may provide the opportunity for real-world assessment and intervention that will streamline clinical input for years to come. In order to establish the benefits of this approach, we need to operationalize what is expected in terms of a successful measurement. We focused on three clinical long-term conditions where a novel case has been made for the benefits of RMT: major depressive disorder (MDD), multiple sclerosis (MS), and epilepsy.ObjectiveThe aim of this study was to conduct a consultation exercise on the clinical end point or outcome measurement priorities for RMT studies, drawing on the experiences of people with chronic health conditions.MethodsA total of 24 participants (16/24 women, 67%), ranging from 28 to 65 years of age, with a diagnosis of one of three chronic health conditions―MDD, MS, or epilepsy―took part in six focus groups. A systematic thematic analysis was used to extract themes and subthemes of clinical end point or measurement priorities.ResultsThe views of people with MDD, epilepsy, and MS differed. Each group highlighted unique measurements of importance, relevant to their specific needs. Although there was agreement that remote measurement could be useful for tracking symptoms of illness, some symptoms were specific to the individual groups. Measuring signs of wellness was discussed more by people with MDD than by people with MS and epilepsy. However, overlap did emerge when considering contextual factors, such as life events and availability of support (MDD and epilepsy) as well as ways of coping (epilepsy and MS).ConclusionsThis is a unique study that puts patients’ views at the forefront of the design of a clinical study employing novel digital resources. In all cases, measuring symptom severity is key; people want to know when their health is getting worse. Second, symptom severity needs to be placed into context. A holistic approach that, in some cases, considers signs of wellness as well as illness, should be the aim of studies employing RMT to understand the health of people with chronic conditions.
Highlights
It is estimated that by 2020, chronic health conditions will contribute to approximately 57% of the global burden of disease [1]
We identified three clinical groups where there is a strong case for the potential benefits of Remote measurement technology (RMT) for measuring and managing recurrent and persistent chronic health conditions: major depressive disorder (MDD), a mood disorder characterized by a persistent feeling of sadness or a lack of interest in outside stimuli with a high risk of reoccurrence [7]; multiple sclerosis (MS), a relapsing or progressive demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged over time; and epilepsy, a long-term neurological condition causing frequent seizures
People with MS and epilepsy were recruited through third-sector organizations and local clinics; people with MDD were recruited from a register of people who had given prior consent to be contacted about research studies and had been screened on a self-report measure of MDD: the World Health Organization's Composite International Diagnostic-Short Form [12]
Summary
It is estimated that by 2020, chronic health conditions will contribute to approximately 57% of the global burden of disease [1]. Remote measurement technology (RMT), including the use of mobile phone apps and wearable devices, may provide the opportunity for real-world assessment and intervention that will streamline clinical input for years to come. We focused on three clinical long-term conditions where a novel case has been made for the benefits of RMT: major depressive disorder (MDD), multiple sclerosis (MS), and epilepsy. Objective: The aim of this study was to conduct a consultation exercise on the clinical end point or outcome measurement priorities for RMT studies, drawing on the experiences of people with chronic health conditions. A holistic approach that, in some cases, considers signs of wellness as well as illness, should be the aim of studies employing RMT to understand the health of people with chronic conditions
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