kclpure.kcl.ac.uk€¦ · Web viewEngaging across dimensions of diversity: a cross-national perspective on mHealth tools for managing relapsing remitting and progressive multiple

Engagement with mHealth for people with MS

Engaging across dimensions of diversity: a cross-national perspective on mHealth tools for managing relapsing remitting and progressive multiple sclerosis

Sara K Simbletta*, Joanne Evansa, Ben Greera, Hannah Curtisa, Faith Matchama, Marta Radaellib, Patricia Muleroc, Maria Jesús Arévaloc, Ashley Polhemusd, Jose Ferraod, Peter Gambled, Giancarlo Comib, Til Wykesa, for the RADAR-CNS consortiume.

a Institute of Psychiatry, Psychology and Neuroscience, King’s College London, UK.

b Neurology services, San Raffaele Hospital MS centre, Milan, Italy.

c Centre d´esclerosi multiple de Catalunya, Hospital Vall d´Hebron, Barcelona, Spain.

d MSD IT Global Innovation Center, Prague, Czech Republic.

e www.radar-cns.org.

* Corresponding author telephone: (+44) 207 848 0762; e-mail address: [email protected]; postal address: Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park, London, SE5 8AF.

mailto:[email protected]


Abstract

Background: Smartphone apps and wearable devices could augment clinical practice by detecting changes in health status for multiple sclerosis (MS). This study sought to investigate potential barriers and facilitators for uptake and sustained use in (i) people with both relapsing remitting MS (RRMS) and progressive MS (PMS) and (ii) across different countries.

Methods: Twenty four participants with MS took part in four focus groups held in three countries (2 in the UK, 1 in Spain, and 1 in Italy) to investigate potential barriers and facilitators for mHealth technology. A systematic thematic analysis was used to extract themes and sub-themes.

Results: Facilitators and barriers were organised into functional technology-related factors and non-functional health-related and user-related factors. Twelve themes captured all requirements across the three countries for both RRMS and PMS. Key requirements included accommodation for varying physical abilities, providing information and memory aids. Potential negative effects on mood and providing choice and control as part of overcoming practical challenges were identified.

Conclusions: We took a cross-national perspective and found many similarities between three European countries across people with RRMS and PMS. Future provision should accommodate the key requirements identified to engage people with MS in scalable mHealth interventions.

Key words: multiple sclerosis; mobile Health; mHealth; barriers and facilitators; engagement


1 IntroductionCurrent “gold-standard” measurement for multiple sclerosis (MS) severity or progression is based on a clinical neurological examination. However, depending on information only collected at clinic appointments, may mean missing changes that are important to treatment and support. More detailed tracking may be able to help assess treatment effectiveness early. Remote assessments that are incorporated into daily life provide an opportunity to establish more sensitive and objective methods of identifying changes in health status. Continuous collection of accelerometer data (to detect small changes in movement) and more frequent recording of self-reported outcomes (such as functional ability) via mobile technology (mHealth) can supplement the information gathered at clinic appointments.

The implementation of mHealth technology for real-world assessment is reliant on user engagement. There is growing evidence for acceptability of mobile health systems to help track symptoms of MS. High adherence rates (>80%) to the completion of web-based patient reported outcomes have been reported (Engelhard, Patek, Sheridan, Lach, & Goldman, 2017), and ecological momentary assessments have been successfully used to better understand symptoms patterns (Powell, Liossi, Schlotz, & Moss-Morris, 2017) as well as track medication adherence (Settle et al., 2016) in everyday life. There are now examples of using wearable sensors as novel measures of gait quality (Viqueira Villarejo, Maeso Garcia, Garcia Zapirain & Mendez Zorrilla, 2014). However, there is still scepticism. Some argue that this shift to patient responsibility may be met with ambivalence and resistance (Lupton, 2013). Indeed, a recent survey highlighted concerns that included the potential for reduced contact with healthcare professionals (Griffin & Kehoe, 2018). Alongside this, studies reporting on the potential barriers to engagement with mHealth tools cite queries about unclear benefits, data security or trustworthiness, and the importance of accommodating physical (e.g. visual) impairments (Giunti, Kool, Rivera Romero, & Dorronzoro Zubiete, 2018; Griffin & Kehoe, 2018; Winberg et al., 2017). Other studies exploring the usability of prototype mobile applications have commented on the need to fine-tune to user needs, including country-specific requirements (Tonheim & Babic, 2018).

For people with MS, where there may be variation in terms of level of disability and nature of the condition, be it progressive or relapsing-remitting, there is a need to explore potential barriers across this spectrum. For mHealth resources to be developed for use across Europe there also needs to a consideration of the requirements for people within different countries. Common barriers and facilitators need to be identified that form the key minimum requirements to encourage engagement with mHealth technologies. In line with a vision of developing tools useful in several European countries, participants were recruited from three countries (Italy, Spain and the UK). Overcoming the limitations of other studies we included people with RRMS and progressive MS (PMS), who had varied experience of technology.


2 Material and methods2.1 DesignIndividuals with a diagnosis of MS took part in focus groups in three countries following a topic guide adapted from Simblett et al (in press), which investigated barriers and facilitators of mhealth tools for depression.

2.1.1 ParticipantsParticipants were eligible if they were over the age of 18 and had received a diagnosis of MS. An advert was sent to members of a UK national MS charity who were asked to respond to the research team directly if interested in taking part. Researchers also recruited participants through an MS clinic at a local hospital in London. People recruited through this clinic were provided with information about the study by their treating clinician and referred to speak to a researcher about taking part if interested. All participants were given at least 24 hours to decide whether they would like to join the focus groups.

2.2 Context2.2.1 ProcedureAll facilitators were female native speakers and were not directly involved in the clinical care of people taking part in the focus groups.

All participants provided written consent to take part in this study. The semi-structured discussions lasted 90 minutes and focused on potential barriers and facilitators to mHealth engagement in the context of living with MS. Participants’ demographic characteristics were gathered and they were asked questions such as:

Who has used wearable or mobile technology to measure health and well-being? Or knows of someone else who has? What was it for? If not, why not?

How did you feel about using wearable or mobile technology? How would you feel about using wearable or mobile technology to predict

changes in your condition?

All procedures were approved by local ethics committees for each country. Ethics code UK: 16/LO/1513; Italy: 282/2016; Spain: PR(AG)408/2016.

2.2.2 Data analysisThe discussions were audio recorded and transcribed verbatim. Spanish and Italian transcripts were translated into English to enable a combined analysis by two independent researchers in the UK using a coding frame also developed in Simblett et al (in press). Subthemes emerged following a thematic analysis. All authors who facilitated the focus groups in the participants’ native language also reviewed the themes emerging from the


analysis. This process sought to validate the findings against the discussions that took place and check that messages were not misinterpreted through the translation process. 3 Results

3.1 Participant characteristicsFour focus groups were conducted with 24 people across three countries (UK Group 1a N9; UK Group 1b N5; Spain N9; Italy N6). Participants in Italy had been living with MS for longer, in Italy and Spain all were white, and in Italy only one participant was a woman. Diagnosis (RRMS or PMS) was evenly distributed across countries (see Table 1) and there were no differences between diagnoses in age (t (1, 21) = .13, P = .99) or time since diagnosis (t (1, 21) = -.04, P = .97). Age was also similar across countries (see Table 1).

Table 1. Participant characteristics separated by country.

UK (n=9) Spain (n=9) Italy (n=6)

Gender: n female (%) 6 (66.7) 4 (44.4) 1 (16.7)

Age: mean (SD) 43.4 (9.5) 54.2 (9.8) 48.8 (15.1)

Diagnosis: n (%)

RRMS

PMS

Unspecified

6 (66.7)

2 (22.2)

1 (0.11)

6 (66.7)

3 (33.3)

4 (66.7)

2 (33.3)

Time since diagnosis (years): mean (SD) 8.3 (10.3) 9.8 (6.4) 24.6 (14.5)

Ethnicity: n (%)

White

Mixed

6 (66.7)

3 (33.3)

9 (100.0) 6 (100.0)

3.2 Contextual information3.2.1 Living with MSPeople with MS described a multitude of symptoms, most predominantly difficulties with movement, including walking and arm/hand function, but also problems with vision, fatigue,


speech and cognition. The emotional impact of MS was apparent across all countries. One person said ‘I’ve had quite a few different symptoms and some have been very frustrating […] I try and hide it in a way from people seeing’ (UK11). Some described difficult experiences such as perceived discrimination and stigma. Many participants were taking medication. Participants in all groups discussed the impact of MS on family and friends or their social life. Other slightly different conversations about experiences of MS were held between countries, summarised in Table 2.


Table 2. Subthemes of contextual factors emerging from the focus groups across the three countries. The numbers in brackets indicate number and percentage of people who raised each point in each group.

UK (Group 1a) n=9 UK (Group 1b) n=5 Spain n=9 Italy n=6

Symptoms of MS Difficulty walking (1)Visual problems (1)Fatigue (6)Speech problems (1)

Problems with arm or hand functioning (2)

Difficulty walking (4)Visual problems (1)

Speech problems (1)Problems with arm or hand functioning (1)Cognitive difficulties (1)

Difficulty walking (4)Visual problems (1)Fatigue (2)

Problems with arm or hand functioning (2)Cognitive difficulties (2)

Living with MS Emotional impact (2)Use of medication (5)Multiple relapses (2)Stigma and discrimination (1)Effects on family and friends (2)Unpredictability (3)Fluctuation in symptoms (1)Difficulties planning (3)Maintaining an identity (4)Avoiding infection (1)Side effects of medication (1)

Emotional impact (1)Use of medication (3)

Emotional impact (3)

Experiences of control (4)Impact on social life (5)Learning to live with MS (4)Difficulty coping (2)

Emotional impact (2)Use of medication (1)Multiple relapses (1)Stigma and discrimination (6)Effects on family and friends (4)

Falling and fractures (2)Importance of support (5)Information and support for children (5)Wheelchair enables independence (1)

Uses of mHealth No experience of mHealth (1)Activity trackers/smartwatches (4)Smartphone apps for health (4)Managing diet and weight (5)

Tracking blood pressure (1)Managing fitness/exercise (3)Virtual reality for fitness (1)

Activity trackers/smartwatches (1)

Managing fitness/exercise (2)

No experience of mHealth (1)Activity trackers/smartwatches (2)Smartphone apps for health (5)Managing diet and weight (3)Tracking heartrate (2)Tracking blood pressure (4)Managing fitness/exercise (3)

Diary to share information with clinician (4)Wearable camera to take photos (1)Tool to provide motivation (1)

Activity trackers/smartwatches (4)Smartphone apps for health (1)

Tracking heartrate (1)


3.2.2 Use of mHealth technologyTwo participants reported that they had no previous experience of mHealth technologies. Other participants reported using activity trackers and smartwatches as well as smartphone apps for health. Common uses had included managing diet and weight and fitness/exercise, including tracking heartrate. Other less frequent uses are described in Table 2.

3.3 Barriers and facilitators to the adoption of remote assessment technologyTable 3 and 4 summarise the findings of the themes emerging from the qualitative analysis of barriers and facilitators across countries and diagnosis, respectively. These are explained in further detail within the sections below.

3.3.1 Health specific barriers and facilitators

Physical ability: The ability to measure activity accurately due to limited movement was reported by participants in the UK and Italy. One person said: ‘the more severe MS people in the centre, they’re only able to do wheelchair-based exercises’ (UK10). A UK participant discussed how relapses and exacerbations in limited movement have posed specific difficulties in the past: ‘on a practical basis charging my phone was actually really difficult because I couldn’t actually get out of bed to charge it’, (UK10). Needs differ depending on the severity of symptoms including poor dexterity and visual impairments.

Cognitive ability: Poor memory was raised across all countries as generating missing data: ‘My problem is memory. I might have walked all seven days of the week but only have two of them recorded because I didn’t remember to connect it [a smartwatch] the other five days’ (SP5).

Emotional resources: Participants identified lack of motivation and ‘discipline’ (UK10) as a key barrier and one person in Italy observed that emotional state might lead to underestimations of achievement when mood is low.

3.3.2 User specific barriers and facilitators

Technology acceptance: Digital literacy could be a barrier. One person said ‘I’ve got one and I don’t know how to use it, right, I’ve tried to use it and I thought to myself, you know what, forget this’ (UK8).

Participants in Spain touched on readiness to change and accept novel technologies and in Italy and the UK the negative impact of feeling disabled when adopting assistive technologies was discussed. One person said ‘I think that wearing technologies, in this case the watch, could be a problem. There is always the person who asks you why you have that thing or sees… an object you are wearing is like a crutch and it becomes like an identification


object and makes you a little different’ (IT4). Despite this, some devices were mentioned as non-stigmatising, ‘almost trendy’ (UK10), facilitating use and in Spain they thought that observing other people (colleagues or sportspeople) wearing devices, could lead to greater acceptance but their use may be limited by employment dress codes and policies.

Perceived utility: Across all countries getting feedback was a highly valued facilitator with positive views of active engagement including raising awareness and providing motivation. One person said ‘I believe that information is power’ (SP7) and ‘I do the same things as before, but now I know when I walk the dog that by doing one kilometre, it will make me feel better. It really gives me a boost’ (SP7).

Participants suggested mHealth technology provides greater accuracy than human assessment. The fluctuating nature of MS was raised as presenting problems for infrequent clinic-based assessments, and the reliance on memory was seen as burdensome and unreliable.

Perceived costs: Across all countries, concerns about privacy and the potential negative impact on mood or increased anxiety were raised. Some participants did not want their location monitored. ‘I’d rather a twenty-four-hour time delay…I wouldn’t want them to know where I am right now’ (UK13).

In terms of mood changes they said ‘I think the idea is great, but I am worried it will make me anxious’ (SP4) and ‘I don’t want to become obsessed’ (SP6).

Overall value: Whilst many people expressed general approval, there was also ambivalence with some preferring guidance from healthcare professionals: ‘the doctors should be the ones telling us, you need to walk this much, or eat that, or do the other, rather than relying on a device ’ (SP4). Balancing costs with utility was reported in all countries. Some felt the need to trade off certain desirable qualities: ‘I prefer comfort over information’ (SP5). Inaccuracies in measurement were suggested to undermine the value of mHealth across all countries.

3.3.3 Technology specific barriers and facilitators

Convenience: Technology that serves a desired function was suggested in every country like a watch or memory aid: ‘I think it should be functional as well at least be a watch’ (UK13), ‘I use it like a notebook.’ (SP6).

The inability to wear technology (e.g. in the shower or at work) was a general barrier to engagement. Automatic data collection was endorsed as a facilitator with inconvenient and time consuming data entry highlighted as a barrier. When active data entry was required delaying responding was suggested in the UK. Compatibility with other devices was also important.


Accessibility: A need to personalise mHealth technology was raised in all countries: ‘MS is so different for everybody. If there was something that was personalised for you then you yourself would know, yeah ok that’s good, rather than it just being a generic thing because that would never work for anybody’ (UK16). The technology should have a clear and simple design with disabilities in mind. ‘It needs to be as intuitive and as simple as possible for people because some people are gonna be really up on the technology and understanding things and some people are gonna be like me and not very good and some people are gonna be even worse’ (UK10). Financial considerations were limitations such as insufficient data allowances.

Usability: Insufficient battery power was a barrier with smartphone apps: ‘I turned off all my apps because it was running in the background, my battery was dying all the time‘ (UK13) with ease of charging with portable, lightweight chargers.

Wearable devices with features such as being waterproof may facilitate use. Data input and output (e.g. visualisation) design was also raised as important.

Intrusiveness: Participants liked data being gathered passively: ‘if the new system was going to record it automatically, that would be a lot better’ (UK10). However, choice and control were key considerations across countries, including choosing when to opt in or out of data collection, receiving feedback or notifications and sharing of information.

Comfort was raised in Spain and Italy and was related to stopping use in the past, ‘ it falls down, gets sweaty, or is too tight’ (SP9). Devices need to be discreet; ‘it could be a plaster that I can hide under my clothes…something a little more hidden and so you cannot see it’ (IT4).


Table 3. Summary of themes across major and minor categories for all countries. The numbers in brackets indicate number and percentage of people who raised each point in each group.

A: Health-related barriers and facilitators


Emotional resources Motivation and self-discipline (2) Motivation and self-discipline (4)Emotional state and benefits of positive thinking (4)

Awareness Low insight (1) Low insight (3) Low insight (1)Cognition Forgetfulness (5) Forgetfulness (2)

Reading problems (1)Learning difficulties (3)

Forgetfulness and poor memory (4)

Stuttering (1)

Forgetfulness and poor memory (3)Reading problems (2)

Physical Limited movement (2)Exacerbations in limited movement (1)Poor dexterity (2)Poor vision (2)

Stage of illness (2)

Limited movement (1)

B: User-related barriers and facilitators


Technology acceptance Non-stigmatising (3)

Digital literacy (1)Feeling disabled (1)Digital literacy (2)

Not ready to change (2)Observations of others wearing devices (2)

Non-stigmatising (2)Feeling disabled (1)

Dress codes and employment policies (1)Perceived utility Feedback or provision of information (4)

Provides motivation (4)Raises awareness and understanding (4)Greater accuracy than human assessment (1)

Novelty (1)Offers peer support (1)

Feedback or provision of information (2)Provides motivation (1)

Feedback or provision of information (5)Provides motivation (4)Raises awareness and understanding (2)Greater accuracy than human assessment (4)Improved clinical care (4)

Smoother communication (1)

Feedback or provision of information (3)

Raises awareness and understanding (4)Greater accuracy than human assessment (3)Improved clinical care: decision aid (1)

Reduces anxiety (1)Perceived costs Negative impact on mood or anxiety (2)

Concerns about privacy and security (2)

Demotivating (1)Feeling controlled by technology (1)

Negative impact on mood or anxiety (3)Negative impact on others: anxiety (1)Concerns about privacy and security (4)

Demotivating (1)

Negative impact on mood or anxiety (6)Negative impact on others: privacy (2)Concerns about privacy (5)Misinterpretations (1)

Negative impact on mood or anxiety (2)Negative impact on others: increased workload (1)Concerns about privacy (1)Misinterpretations: missing information (3)


Overall value General approval (7)

Balancing utility and costs (1)Inaccurate (5)Loss of interest over time (1)

General approval (2)Ambivalence (1)Balancing utility and costs (2)Inaccurate (4)

General approval (3)Ambivalence (2)Balancing utility and costs (2)Inaccurate (2)

Preference for doctor’s guidance (2)

Balancing utility and costs (1)Inaccurate (3)

Contextualised information (4)C: Technology-related barriers and facilitators


Convenience Serves a function (3)Automatic data collection (2)Time consuming (3)Unable to wear or carry technology (3)Compatible with other devices (2)Memory aid (4)Short assessments (1)

Inconvenient notifications (1)Ability to delay responses (1)

Serves a function (1)Automatic data collection (4)

Compatible with other devices (4)

Built in emergency alarm (2)

Serves a function (1)Automatic data collection (1)Time consuming (1)Unable to wear or carry technology (1)

Memory aid (2)

Dislikes watch function (2)Smartphone app (4)

Incorporate into your everyday life (1)

Serves a function (1)Automatic data collection (1)Time consuming (1)Unable to wear or carry technology (3)Compatible with other devices (4)

Short assessments (1)Dislikes watch function (2)Smartphone app (2)

Convenient data entry (4)Accessibility Personalised (4)

Clear and simple (1)Personalised (4)Clear and simple (3)Financial considerations (2)Designing with disabilities in mind (4)Insufficient data allowance (1)

Personalised (5)Clear and simple (2)Financial considerations (1)

Personalised (5)Clear and simple (2)

Usability Ease of charging (4)Insufficient battery power (3)Wearable (6)Waterproof (3)Broken device (1)

Ease of charging (3)Insufficient battery power (2)

Ease of charging (2)

Wearable (1)

Not wearable (1)

Ease of charging (4)Insufficient battery power (4)

Waterproof (1)

Use of prompts (4)Data visualisation design (2)Data input design (4)

Intrusiveness Choice and control (1)

Amount of data input (1)Location tracking (5)Distracting notifications (2)

Choice and control (4) Choice and control (6)Comfort (5)

Choice and control (1)Comfort (1)Amount of data input (5)


Passive data collection (3) Passive data collection (2)Weight (2)

Size (1)Basic feedback only (2)

Discreet and not invasive (2)


Table 4. Summary of themes across major and minor categories for types of MS. The numbers in brackets indicate number and percentage of people who raised each point in each diagnostic group.

A: Health-related barriers and facilitators RRMS n=16 PMS n=7

Emotional resources Motivation and self-discipline (2)Emotional state and benefits of positive thinking (2)

Motivation and self-discipline (1)Emotional state and benefits of positive thinking (2)

Awareness Low insight (3) Low insight (1)

Cognition Forgetfulness (8)Learning difficulties (2)Reading problems (3)Stuttering (1)

Forgetfulness (2)Learning difficulties (1)

Physical Limited movement (2)Exacerbations in limited movement (1)Poor vision (2)Poor dexterity (2)

Limited movement (1)Exacerbations in limited movement (1)

Stage of illness (2)

B: User-related barriers and facilitators RRMS n=16 PMS n=7

Technology acceptance Digital literacy (1)Not ready to change (1)Observations of others wearing devices (1)Non-stigmatising (4)Feeling disabled (2)Dress codes and employment policies (1)

Digital literacy (1)Not ready to change (1)Observations of others wearing devices (1)

Perceived utility Feedback or provision of information (11)Provides motivation (6)Raises awareness and understanding (6)Greater accuracy than human assessment (5)Improved clinical care (2)Novelty (1)Offers peer support (1)Smoother communication (1)Reduces anxiety (1)

Feedback or provision of information (5)Provides motivation (3)Raises awareness and understanding (4)Greater accuracy than human assessment (3)Improved clinical care (2)

Perceived costs Negative impact on mood or anxiety (9)Negative impact on others (3)Concerns about privacy and security (9)Misinterpretations and missing information (3)Feeling controlled by technology (1)

Negative impact on mood or anxiety (3)Negative impact on others (2)Concerns about privacy and security (3)

Demotivating (1)

Overall value General approval (1)Ambivalence (3)Balancing utility and costs (5)Inaccurate (8)Preference for doctor’s guidance (1)Contextualised information (2)Loss of interest over time (1)

General approval (1)Ambivalence (2)Balancing utility and costs (6)Inaccurate (5)Preference for doctor’s guidance (1)Contextualised information (2)

C: Technology-related barriers and facilitators RRMS n=16 PMS n=7


Convenience Automatic data collection (5)Time consuming (4)Unable to wear or carry technology (5)Compatible with other devices (6)Short assessments (1)Dislikes watch function (3)Smartphone app (2)Convenient data entry (3)Serves a function (5)Memory aid (4)Inconvenient notifications (1)Ability to delay responses (1)Built in emergency alarm (2)

Automatic data collection (3)Time consuming (2)Unable to wear or carry technology (3)Compatible with other devices (3)Short assessments (1)Dislikes watch function (1)Smartphone app (2)Convenient data entry (2)

Incorporate into your daily life (1)

Accessibility Personalised (10)Clear and simple (4)Financial considerations (2)Designing with disabilities in mind (3)Insufficient data allowance (1)

Personalised (5)Clear and simple (3)Financial considerations (1)Designing with disabilities in mind (1)

Usability Ease of charging (6)Insufficient battery power (3)Wearable (6)Use of prompts (2)Data input design (3)Lost data due to charging (1)Waterproof (4)Broken device (1)Data visualisation design (2)

Ease of charging (4)Insufficient battery power (2)Wearable (2)Use of prompts (2)Data input design (2)Lost data due to charging (1)

Intrusiveness Choice and control (8)Comfort (1)Amount of data input (3)Distracting notifications (1)Passive data collection (3)Basic feedback only (1)Weight (1)Location tracking (5)Size (1)Discreet and non-invasive (2)

Choice and control (3)Comfort (2)Amount of data input (2)Distraction notifications (1)Passive data collection (1)Basic feedback only (1)Weight (1)

3.4 Cross country requirementsThe twelve barriers and facilitator themes captured all requirements across all three countries. The additional UK group to check themes emerging did not expand on them. Few easily discernible differences emerged between countries. However, physical health was discussed less in Spain, digital literacy emerged only in the UK, and the Italian group discussed design in greater depth. Experience with technology varied with Italian participants being most familiar with activity trackers/smartwatches but the least familiar with the use of smartphone apps. Figure 1 summarises the themes raised across the UK, Spain and Italy, divided into functional requirements specifically related to the technology and non-functional requirements including user beliefs, attitudes and health status.


Figure 1. Requirements for engagement with mHealth technology for MS across the UK, Spain and Italy.

3.5 Diagnostic requirementsThere was a great deal of similarity between the ideas suggested by individuals with RRMS and PMS (see Table 4). However, a greater variety of subthemes were mentioned by people with RRMS. Participants with RRMS discussed the need to not feel stigmatised, ‘disabled’ or ‘old’ by wearing a device that might indicate their health status. While one person with PMS said ‘for me nothing would change’ (IT3) by wearing a device. People with RRMS raised more concerns about location tracking whereas stage of illness was only raised as relevant by two people with PMS and balancing the utility against costs appeared more important.

4 Discussion

4.1 Principal findingsThe results presented are in line with previous studies for MS (Giunti et al., 2018; Griffin & Kehoe, 2018; Winberg et al., 2017) but expand them for different diagnoses and across three European countries where there were only a few discernible differences. Similar themes also emerged for people with a diagnosis of RRMS and PMS. As the topic guide and


coding frame was adapted from a study that explored barriers and facilitators to engagement with mHealth technology for people with a diagnosis of depression (Simblett et al., in press), some cross-diagnostic comparisons could be drawn.

The key subthemes consistently emerged across all countries were as follows.

4.1.1 Variations in physical ability and the compounding impact of low insight and cognitive symptoms.Changes in movement, dexterity and vision are physical symptoms associated with MS that may present unique challenges when developing mHealth technology for this group. Participants spoke about the potential impact on the validity and reliability of results if these needs are not taken into account, regardless of whether symptoms are episodic (e.g. RRMS) or enduring (e.g. PMS). Other factors such as the impact of poor motivation, insight and forgetfulness were also important to consider as part of the design of mHealth technologies but may not be specific to MS (Simblett et al., 2018).

4.1.2 Perceived utility of mHealth for providing information, raising awareness and enabling a greater level of accuracy than human assessment.

There was an emphasis on the provision of information or feedback, as a means of actively participating in self-management of their condition (both for RRMS and PMS), which has a positive impact on condition-related knowledge (Köpke, Solari, Khan, Heesen, & Giordano, 2014). Measurement via remote technology may provide a greater degree of accuracy than infrequent in-clinic assessments. Literature reviews (Bethoux & Bennett, 2011) have found that quantitative measurement of gait and recordings of mobility in the patient's environment, e.g. via accelerometry, are not routinely used in the clinical setting, but participants could clearly see the advantage of such automatic data collection. Smartphone apps, in addition to wearable devices, may aid the recollection of symptoms patterns in-between appointments. These issues were emphasised slightly more by people with RRMS, who may benefit more from noticing variations in their symptoms, e.g. to identify the occurrence of relapses. In comparison to the same questions asked to people with depression (Simblett et al., in press), this was a novel theme emerging and may relate to the presence of more cognitive symptoms.

4.1.3 Perceived costs associated with negative impact on mood, concerns about privacy and potential inaccuracy, which needed to be balanced against perceived utility.

Some themes were as important for MS as for depression. These include the potential costs associated with use of mHealth technologies and the possible negative impact on mood or anxiety and stigma. Wearing a device or using assistive technology has the potential to indicate the user’s need for monitoring and thus affecting the way in which they view


themselves or interact with others (Abbott, 2015; Mittelstadt, Fairweather, Shaw & McBride, 2015; Parette & Scherer, 2004). In our research, anxieties about stigma were more apparent for people with a diagnosis of RRMS, who are only periodically symptomatic and in need of assistance with disabilities being perhaps less obvious. Issues with stigma may be able to be mitigated thorough aesthetic choices (Wu, Fassert, & Rigaud, 2012) and community-wide implementation (Courtney, Demiris, & Hensel, 2007), which were strategies endorsed by the people who took part in our focus groups.

4.1.4 The need to consider practical issues in the design of mHealth resource that engender an ethos of choice and control.

This study delved deeper into the practical issues associated with mHealth technology for people with MS than previously (Giunti et al., 2018). Practical challenges (e.g. ease of charging, sufficient battery power, clear and simple features) emerged more strongly for people with a physical health problem such as MS than in depression studies. The majority of the evidence falling under the themes of convenience, accessibility, usability and intrusiveness of technology were unique to MS. This highlights the necessity of considering condition-specific requirements in the design of mHealth technologies. Choice and control was a large category emerging. Co-production and careful user-testing are likely to be key determiners, which can accommodate fluctuating or progressive disabilities. This echoes the conclusions of previous studies that tools need to be designed with specific disabilities in mind (Engelhard et al., 2017).

These four groups of subthemes serve as minimum requirements when designing mHealth systems that have a greater likelihood of being feasible and acceptable resource for people with MS across three European countries.

4.2 Strengths and limitationsWhile the results provide a rich exploration into potential factors influencing engagement with mHealth technology, there is still a dependence on hypothetical scenarios and only implementation will show whether they are important. However, the findings of this study may pre-empt possible issues. Individual differences associated with the severity of MS were noted and future research should explore this in greater depth, including the use of psychometric tools to quantify severity, and perhaps distinguishing between primary and secondary forms of PMS. Responding may differ when a person is symptomatic as compared to being relatively healthy.

5 ConclusionsThis study contributes to an emerging evidence-base on how to make the design of mHealth tools easier to engage with for people with MS. We found many similarities between three European countries across people with RRMS and PMS. A core group of design


considerations have been identified. Although themes overlapped with previous research on barriers and facilitators of engagement with mHealth (e.g. in depression), there are some distinct considerations for people with MS. Future research needs to work towards accommodating these key requirements to engage people with MS in scalable mHealth interventions.


Acknowledgements

This paper was written as part of the development of useful mHealth and remote measurement technology systems in the RADAR-CNS project. The RADAR-CNS project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115902. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA) (www.imi.europa.eu). This communication reflects the views of the RADAR-CNS consortium and neither IMI nor the European Union and EFPIA are liable for any use that may be made of the information contained herein. Professor Til Wykes would also like to acknowledge independent funding from the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. This research was reviewed by a team with experience of mental health problems and their carers who have been specially trained to advise on research proposals and documentation through the Feasibility and Acceptability Support Team for Researchers (FAST-R): a free, confidential service in England provided by the National Institute for Health Research Maudsley Biomedical Research Centre via King’s College London. The authors would like to acknowledge the contributions of the Multiple Sclerosis service at King’s College Hospital, in particular Dr Eli Silber, Dr Peter Brex and Dr Victoria Williams as well as The MS Society for their support with recruitment for this study.

http://www.imi.europa.eu/


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