Digital health experiences reported in chronic disease management: An umbrella review of qualitative studies

Abstract

Introduction

Digital health interventions can be useful for the management of chronic disease. The aim of this study was to draw out universal themes to understand how people with chronic conditions experience digital health services, programmes, and interventions, and consequently, better inform future digital health delivery.

Methods

An umbrella review was conducted to identify qualitative systematic reviews reporting digital health experiences in chronic disease. Themes for each included review were independently extracted and appraised by two review authors. Data analysis was conducted using the Constant Comparative method.

Results

Twenty-two systematic reviews containing 240 individual studies were selected for inclusion. Mental health was the most common condition (n = 5, 23%), followed by cancer (n = 4, 18%) or a combination of chronic diseases (n = 4, 18%). Common themes across the conditions were categorised under nine headings, including: (i) participation and engagement (strong usability and engagement vs reluctance to use digital health when these concepts are ignored), (ii) trust, confidence, and competence (users felt reassured, however technology illiteracy led to a perceived lack of control), (iii) perceived value, perceived effectiveness, transaction cost (gained from efficient aspects of digital health, but also lost through the burden of keeping up with data entry), (iv) perceived care quality (requiring tailoring and fostering motivation), (v) barriers and threats (related to technology risks and challenges), (vi) health outcomes (improved self-management capability), (vii) relationships (improved participant-health professional interaction, but interpersonal aspects such as face-to-face contact were lacking), (viii) unplanned benefit (where digital health often led to users feeling more empowered in their health journey), and (ix) diversity of experiences (reflecting ambivalence of experiences and discipline-specific experiences).

Conclusion

People with chronic conditions perceive digital health provides feelings of reassurance and the ability to self-manage their condition. While there is ambivalence across the participant experiences reported within the major themes, this umbrella review has outlined a need for future interventions that are user-friendly, flexible, and tailored to individual users. This will be best achieved through a co-design model, with the consumer actively involved in the planning and design of digital health products and services.

Keywords

Telehealth telemedicine digital health patient experience chronic disease

Background

The increasing prevalence and multimorbidity associated with chronic diseases are a major challenge for healthcare systems – impacting the health of people globally, but also posing challenges from a workforce perspective due to the enormous financial burden and staffing challenges it poses.¹ Many individuals could effectively self-manage their condition in the community with the right support.² However, personalised health information and feedback outside of scheduled healthcare visits are often lacking. Most commonly, people are required to manage complex and co-morbid conditions independently.^3,4 Unsurprisingly, adherence to evidence-based interventions is poor. For example, of the six million Australians with high blood pressure, approximately one-quarter (23%) are estimated to be uncontrolled due to not taking medication.⁵

Digital health provides a unique opportunity to deliver sustainable, effective, and high-value healthcare in a variety of settings and can integrate at various levels of healthcare (e.g. primary, secondary, and tertiary) to allow true connected, proactive and coordinated care. Digital health includes electronic health (eHealth), such as web-based and software programmes; mobile health (mHealth) such as smartphone applications (apps), text messaging programmes and wearable devices; health information technology; telehealth/telemedicine; electronic medical records (EMRs) and emerging areas such as the use of advanced computing sciences in big data, genomics and artificial intelligence.⁶

Understanding user perspectives on digital health is critical to appropriate intervention design and implementation. Knowledge of these factors is a useful resource for implementers, researchers and healthcare providers to match interventions as solutions to specific problems. Recent systematic reviews of patient satisfaction have shown that digital health is an acceptable modality for care delivery; however, a variety of factors exist that affect patient satisfaction, such as ease of use or cost of the intervention.⁷ There is a growing number of primary reviews of an extensive body of qualitative research on the experiences of telehealth and digital health interventions in chronic conditions. As such, this umbrella review aimed to draw out universal themes to understand how people with chronic conditions experience digital health services, programmes, and interventions, and consequently better inform future digital delivery.

Methods

This umbrella review of qualitative systematic reviews was reported in accordance with the JBI handbook and guidance on umbrella reviews.⁸ It adheres to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) framework.⁹ An umbrella review was chosen for this study to specifically aggregate the findings from primary systematic reviews rather than original qualitative studies.

Search strategy & sources

A comprehensive search of MEDLINE, EMBASE, PsycINFO, CINAHL, and reference lists was undertaken from database inception to November 2021. Search strategies were developed by the research team with assistance from an information specialist (Supplemental File 1). Study titles and abstracts were screened by two independent review authors and appraised according to the inclusion and exclusion criteria as detailed in Table 1.

Table 1.

Inclusion and exclusion criteria.

	Inclusion	Exclusion
Systematic reviews of qualitative studies	Interviews Focus groups Open response forums Mixed methods studies (where there was qualitative data which could be extracted independently)	Quantitative data Guidelines Narrative reviews and editorials Case studies
Population	Adults from any geographic location living with a chronic condition as defined by the World Health Organisation	Children Animal studies
Intervention Main outcome	Qualitative reports must have reported on experiences and perceptions specifically related to receiving care delivery and self-management support via a digital health program, intervention or initiative. The ‘intervention’ could either be experienced or perceived (i.e. yet to be experienced but participants have a perception/attitude toward). Use could have been in any healthcare setting or the home. The exposure and frequency of the digital health ‘intervention’ was not limited	Experiences and perceptions related to in-person care There were no secondary outcomes
Comparator	NA	NA
Outcomes	Experiences and perceptions expressed as themes and subthemes	Clinical and behavioural outcomes

Following deduplication, full-text articles of included and potentially included studies were also reviewed and compared against inclusion/exclusion criteria (Table 1) by two independent investigators. Any disagreements were managed by consensus or a third reviewer.

Data collection and extraction

Data from eligible studies were extracted by one investigator using predefined fields. The accuracy of extracted data was confirmed by a second investigator. Extracted data included citation details, year of publication, study design (qualitative review, integrative or mixed methods review), chronic condition, digital health modality studied, number of original qualitative studies included in each primary review, analysis technique utilised, themes, subthemes, and selected quotes from each of the primary reviews. Qualitative data were extracted from the published systematic review – not the primary studies included in each systematic review.

Quality assessment

Three authors (JTK, KV, and MLT) assessed the comprehensiveness of reporting for each systematic review using The JBI Critical Appraisal Checklist for Systematic Reviews and Research Syntheses.¹⁰ Each included review study was independently assessed by at least two of the three authors and a consensus was reached. A third author provided input when there were discrepancies.

Data analysis

A thematic analysis using meta-aggregation¹⁰ was used to synthesise the data and generate analytical themes, which are a higher level of abstraction of concepts, understandings, or hypotheses. Four content experts and qualitative researchers were involved in the data analysis, with each being provided with all studies pertaining to their respective expertise (i.e. mental health, diabetes, cardiovascular disease (CVD), obesity, cancer, and chronic disease). Data analysis was comprised of the following steps. We reviewed each theme, sub-theme and associated quotes line-by-line to conceptualise the data. The author-reported themes for each review were then extracted and sorted under headings according to the pre-defined categories. Following this, similar concepts were grouped into themes and subthemes, and conceptual linkages between themes were used to create a thematic schema. Drawing upon the Constant Comparative Method, the themes that were identified in each review were compared to other themes from the same condition and combined where similarities existed using a selective coding framework reported in Table 2.^11,12 These were then compared across all conditions and once again grouped where there was overlap. To ensure that coding captured the relevant ideas and reflected data from the primary studies, peer debriefing was done with a third review author. A diagram of the data analysis process is included in Figure 1.

Figure 1.

Analytical approach diagram.

Table 2.

Analytical framework used to deductively code, conceptualise and organise the data.

Domain	Explanation
Participation and engagement	Including both microlevel (use and experience of participating) and macrolevel (involvement with the behavioural change process)
Trust	Includes the belief, confidence, and competence in digital health from the perspective of participants
Perceived value and transaction cost	Includes the effort, time, and monetary costs from the perspective of participants
Perceived care quality	Any reported from the perspective of participants
Barriers and threats	Including any relating to the patient and/or health system
Economics	Including societal, individual and healthcare
Health outcomes and perceived effectiveness	Any reported from the perspective of participants
Relationships/partnerships	Reported between patients, health professional and/or technology
Unplanned consequences or benefit	As reported from the perspective of participants

Results

Description of included studies

Our search returned 2643 results, with 1841 unique records to screen after duplicates were removed. Twenty-two systematic reviews met our final inclusion criteria (Figure 2). There were 240 unique individual studies that made up the 22 systematic reviews. Nine of the included reviews used mixed-methods and 13 focused specifically on qualitative methods. Included reviews were published from 2015 onward with over half published between the years 2020 and end of 2021. The majority of studies were conducted in high-income countries (77%, n = 17). Mobile health (mHealth) was the most common digital health modality studied, such as accessing or entering information on a website or app, compared to video consultation. The most prominent chronic condition topics of reviews were mental health (23%; n = 5), cancer (18%; n = 4) and chronic disease in general (18%; n = 4). Other reviewed conditions were chronic obstructive pulmonary disease (COPD), diabetes, chronic pain, CVD, and inflammatory bowel disease (IBD). Characteristics of the included studies are summarised in Table 3.

Figure 2.

PRISMA flow diagram showing the selection of the included studies through citation identification and screening.

Table 3.

Characteristics of included reviews.

Condition	Reviews included	# Papers per review	Method of analysis	Setting of studies included by GNI per capita
Mental health (n = 58)	Berry et al.¹³	15	Thematic analysis	Mostly high-income, one low-income
	Christensen et al.¹⁴	5	Thematic analysis	High-income
	Hand¹⁵	12	Inductive analysis	Mostly high-income
	Patel et al.¹⁶	24	Qualitative meta-synthesis	High-income
	Tatar et al.¹⁷	2	Narrative synthesis	High-income
Cancer (n = 48)	Cox et al.¹⁸	22	Synthesis methods according to Thomas and Harden	High- and upper-middle-income
	Hopstaken et al.¹⁹	9	Framework analysis according to Grol and Wensing	High-income
	Kelley et al.²⁰	4	Theory-use and coding scheme according to Michie and Prestwich	High-income
	Tarver and Haggstrom²¹	13	Narrative synthesis	All income groups
Chronic disease (n = 39)	Birkhoff and Smeltzer²²	11	Integrative analysis	Not reported
	Fraser et al.²³	10	Narrative synthesis	High-income
	McFarland et al.²⁴	2	Thematic analysis and qualitative synthesis according to Walsh	High-income
	Walker et al.²⁵	16	Synthesis methods according to Thomas and Harden	High-income
Diabetes (n = 34^a)	Foong et al.²⁶	8	Synthesis methods according to Thomas and Harden	High income
	Jain et al.²⁷	15	Synthesis methods according to Thomas and Harden	Mostly high-income
	O'Neill et al.²⁸	14	Framework analysis according to the Technology Acceptance Model	High-income
COPD (n = 22^b)	Barken et al.²⁹	12	Meta-ethnography	High-income
	Brunton et al.³⁰	7	Meta-ethnography	High-income
	Li et al.³¹	19	Framework analysis according to the Technology Acceptance Model	High-income
Chronic pain	Fernandes et al.³²	21	Three-step thematic synthesis method for meta-synthesis guided by an inductive approach	High-income
CVD	Tadas and Coyle³³	16	Grounded theory literature review method	Not reported
IBD	Davis et al.³⁴	2	Thematic analysis	High-income

CVD: cardiovascular disease; COPD: chronic obstructive pulmonary disease; GNI: Gross National Income; IBD: inflammatory bowel disease.

Although the number of studies included in the three diabetes reviews is 37, the number of unique studies is only 34 due to duplication.

Although the number of studies included in the three COPD reviews is 38, the number of unique studies is only 22 due to duplication.

Study quality

Overall, the quality of studies was strong, all starting with a clear review focus and concluding with specific directives for new research. However, two areas which were less adherent to the JBI checklist were details and conduct of their critical appraisal and whether this had been conducted independently by two or more reviewers, and also studies using methods (or stating the methods used) to minimise errors in data extraction, such as piloting tools or having two independent researchers extract and check the data. The remaining items were generally very well reported across the studies.

Summary of synthesised themes

The final thematic analysis resulted in 16 common themes across the conditions that were categorised under nine headings. An overview and description of the conceptual links between the themes are presented in Figure 3 and each sub-theme is described under its corresponding heading, detailed below. Supplemental File 2 provides additional example quotes supporting synthesised themes.

Figure 3.

Thematic schema conceptualising the links between each of the synthesised themes.

Theme 1: Participation and engagement

Usability, usefulness and engagement

Most users found digital health as an acceptable way for care to be delivered. Similarly, many found digital health to be easy-to-use and ‘useful’. Reported engagement and acceptability of digital health tools were directly linked to the usability of the platform or device. Certain design features came up repeatedly as being highly valued by people with chronic conditions. For instance, being ‘easy to navigate’, having peer social support aspects, having accessible and concise information, secure data management, and practical ideas incorporated were all valued. One consumer with CVD remarked: ‘It was pretty easy … I like that it’s simple’.³³

Reluctance to use digital health

Some people with chronic disease described an initial feeling that digital health ‘wouldn’t be beneficial’ or they were ‘unwilling’ to give it a go. However, most people with chronic conditions saw the ‘opportunity’ in using digital health and were already using digital technology to look up health information themselves. Some perceived that their conditions were ‘under control’ and that adding on additional tasks was restrictive. Others worried that digital health would be too difficult to implement in their everyday life if they were ‘not very tech savvy’. Once digital health systems or devices were set up, most users found them useful. However, some users were also reluctant to use a personal digital device to share their health information or were sceptical about how digital health would fit in with their model of care pathway. Users also expressed that digital health would be pointless to manage their disease if it was not tailored and relevant to their personal health, if it did not ‘suit their needs’, for example, a user with diabetes said:

I just find that all of these complications are so predestined, that no matter what you do, you are going to get these.²⁷

Trust, confidence, and competence

Providing reassurance

People with chronic conditions felt strongly about the reassurance that digital health provided. Users had ‘peace of mind’ from being monitored passively and valued being able to reach out to ‘get in touch with’ a health professional anytime. Their feelings of reassurance were furthered by the perceived security of their data. Users were also reassured that there was a legitimate reason for contacting a healthcare professional based on feedback from remote monitoring prompts or triggers. This led to feelings of validation to open up and a feeling of ‘relief’ that they ‘could have discussed anything’ about their feelings and symptoms.

It was quite positive. It was quite reassuring; you did feel that you were being monitored. You didn’t think if you put in those symptoms that you would slip through the … you know that if you had really worrying symptoms you would have slipped through the system. Somebody would have picked it up.¹⁸ – [user with cancer]

Limitations in digital literacy leading to feelings of anxiety, discomfort, and lack of control

Not all users were competent in digital health, with technology illiterate users feeling ‘it’s not always that easy’ to engage with devices. Health literacy and content comprehension issues or having ‘too much to read’ was also compounded by a lack of technology skills and literacy. Of note, there appear to be users who are not initially ‘tech savvy’, but this improves over time with exposure and familiarity. People with chronic conditions identified wanting to be trained in technology including the use of iPads and text-messages. It was important to users that any text-message intervention avoids the use of shorthand and incomplete sentences, and allows for simple replies of only a few words. There was a particular concern for older individuals or those with sight and dexterity issues.

I actually don't do a lot with my phone other than I use it for emails and for phone calls. I am not a techy guy to use my iPhone all the time …. It's a different generation I'm in …. I have no need for it. That's the whole point of technology, it's gotta suit your needs. And it doesn't. I don't need it, so I don't use it.²⁶ – [user with diabetes]

Users had trust in information sources

Users wanted digitally provided information to be evidence-based and reliable, not to just ‘ask anybody on the Internet’. For the most part they believed the resources they had access to came from reliable sources which increased their confidence in the intervention. The competence of the healthcare professional recommending the digital health intervention also affected how much they trusted it.

Perceived value, perceived effectiveness, transaction cost

Time gains

People with chronic conditions perceived the use of digital health could result in time gains in several ways. It was said since ‘life’s so busy in general’ the option to see someone from their home was time efficient, and they completed their consultation sooner than if they were attending an in-person appointment:

That you get treated in time, instead of just waiting a week³¹ – [user with COPD]

There was a general consensus among users that information was being shared with them in a more timely, immediate manner as a result of using digital health. The benefits of virtual consultations in terms of travel time savings and overall convenience (often they were ‘online anyway’) were often cited. A UK user postulated that they ‘saved the NHS thousands of pounds’ from avoiding additional emergency visits or readmissions since they could contact their doctors digitally.

Burden of time required

In contrast to time-gain perceptions, some users felt that having to regularly self-monitor via digital health was time-consuming. They believe it took up even more time if the technology was ‘frustrating’ to learn, or if it broke down and needed to be repaired.

I think the device needs to be checked to ensure that it is working properly; if it needs to be repaired frequently, it would be a barrier to use²⁵ – [user with chronic disease]

There was also the view by some users that it was a ‘waste of time’ if the occurrence of symptoms was inevitable, if they already had their condition under control, or if they had no agency in the matter. Conversely, others felt digital health use resulted in less of a treatment burden, and reduced the burden for their family members if they were being monitored more closely by additional medical staff.

Perceived care quality

Apps should be tailored

A strong desire from people with chronic conditions was that digital health apps were specifically about them, ‘as opposed to talking about general issues’. Apps needed to be tailored to an individual or at least a population group. This included the operation of the app itself as well as the information within it. Having an ‘option to change’ things, such as the units of data measurement, and having information ‘at every level of possible understanding’ was favoured. To tailor interventions, it was suggested that end-users be included in the design phase, and have software that allowed the user to personalise content.

I thought ‘yes, yes, yes, I got what you’re trying to get me to do but do I have to listen to all of this?’ You can’t skip ahead and move on. You’re forced to sit there and listen to it all as well³² – [user with chronic pain]

People living with cancer also had unique insights, including a lack of sociocultural appropriateness in mobile apps. These users wanted culturally appropriate avatars and the content to be translated into different languages.

Fostering motivation

There were certain aspects of digital health, for example, reminders and behaviour change prompts, that users found ‘motivating’, such as goal setting and tracking progress. Once the information was tailored to them, they were able to ‘gain new knowledge about how to handle’ their condition and were more interested in improving their health state. This also had a flow-on effect to improving their self-confidence.

… when you put your blood sugar in, the more that you do, the more you kind of use those stickers to get your blood sugar and this little kind of monster gets chained up, he is literally put in chains. So the motivation is to chain up the monster.²⁸ – [user with diabetes]

Barriers and threats

Technology risks and challenges

People with chronic conditions faced a number of challenges when using digital health mainly relating to data accuracy, privacy concerns, and cost. The possibility of encountering these challenges resulted in some hesitating to commence using digital health. When users encountered technical issues, this affected their experience and they felt restricted. It was also an added burden if users were having problems with the app, which led them to ‘drop out’. There was a concern for the accuracy of entered data leading to incorrect interpretation from health professionals, and users thought manual entry could be a ‘pain in the neck’. Relying on these alerts too much also posed a problem as users could become dependent on them and only seek help when alerted, rather than self-monitoring their symptoms.

The issue of privacy was complex as some wanted to share their information and be social, while others preferred to remain anonymous. The cost of apps was also identified as a barrier for some and ideally any mobile app would be free to use.

I dropped out a long time ago because of the problems they were having with the app at the very beginning, and I just got frustrated and I went, ‘Forget it’.³² – [user with chronic pain]

Health outcomes

Increased self-management capability

There were limited user perceptions of digital health’s effect on their personal clinical outcomes. However, they did feel that using digital health ‘makes it a little bit easier’ to deal with their conditions as it increased their ability to self-manage. Users were more self-aware and proactive in dealing with their condition. This gave them confidence.

It’s broadened my mind about everything. So, it’s opened things up to me that I wouldn’t have … if I’d have just gone on in my own little way, I would still be doing the same things so it has changed me, definitely, and I hope for the better.²⁷ – [user with diabetes]

People with chronic conditions sought interventions that gave them ‘more of an understanding of things’ such as their symptoms, and by ‘knowing and learning’ more about their condition, they ‘educated’ themselves. There was a risk, however, that users would have additional anxiety if they were provided with too much information on their health without the proper professional interpretation of some elements. Some found it ‘quite confronting reading the information’ and preferred the ‘ostrich approach’ due to the volume of information.

We identified no studies reporting the patient’s self-reported health status. This lack of user perceptions of digital health’s effect on their personal clinical outcomes means their potential effect on patient-reported outcome measures (PROMs) reported across the studies is uncertain.

Relationships

Improved relationships/communication with health professionals

Digital health allowed for improved consistency and continuity in communication between users and their health professionals. They felt they could ‘get in touch with them anytime’ and the process was collaborative. The frequency of interaction with health professionals seemed to increase. Direct communication with their doctor or nursing team was an important ‘opportunity’ for users, even if they didn’t always use it. Some users also created relationships that extended beyond just their treating team, to involve community groups.

So, I think learning to develop your support systems is extremely important for a diabetic. And that having a forum where even if you don’t have a lot of people in your life that you can talk to about this, but having a forum where maybe you can go on and have an online community can be very helpful.²⁷ – [user with diabetes]

Jeopardising interpersonal connections

While many people with chronic conditions felt they could build relationships with their health professionals using digital health, there were still some that missed the ‘human contact’. Some users reported challenges building rapport using digital health, and most valued direct interaction and in-person connections. In the end, users did not want mobile health and technologies to replace ‘face-to-face’ care. There was also a fear of being lost in the data and having an absence of visual cues.

When you do it with a physio who’s looking at you and they can see what you’re doing, they can see if your technique’s not quite right and they can correct it …. But when you’re doing it on your own, you can do it incorrectly I think … they don’t know much about you on the phone, whether you’re tall or short or big or fat or. You know what I mean?³² – [user with chronic pain]

Unplanned benefit

Empowering

A clear unplanned benefit to using digital health was that it gave people with chronic conditions a sense of empowerment. This concept consistently arose in themes among the included reviews. Users and their families had a sense of accomplishment realising that they were taking on roles that their healthcare team normally would be responsible for (such as measuring their vital signs). Having access to monitoring technology data meant that users could ‘be ready to ask specific questions’ before their appointments, as they were not going to be given any information they did not ‘already have access to’. Their self-efficacy was increased. Further to the concept of empowerment is reiterating the idea that end-users should be involved in app design.

It’s the only format … the Internet format allows people to freely access it rather than having to wait for interventions through the NHS …¹³ – [user with mental health condition]

On the other hand, it is important to note that participants were concerned about some other users (in a hypothetical context) that might be missed due to digital health constraints, such as those that are hearing impaired, not tech savvy, or when the cost is a barrier.

Diversity of experiences

Ambivalence

Integrated throughout the eight themes above, there was substantial ambivalence reported across people with chronic conditions. While there was consensus among chronic condition groups, the experiences and contexts of digital health are unique to each and every individual. The concepts that were most prominent under the theme of ambivalence included: (1) certain users wanted to be part of a sharing community while others preferred privacy; (2) digital health’s ability to save users time and resources yet also be a burden on them; (3) improved self-management skills gave users ‘a lot more independence’, but also made some too dependent on an alert telling them when to seek care; (4) reassurance from being constantly monitored, however, also a risk of increased worry due to the user having access to large amounts of data; and (5) digital health empowered some while others who are less tech savvy might be left behind.

Discipline-specific experiences

There were some conditions where a unique theme was identified across the reviews that were not identified in the other conditions. For example, cancer patients appreciated that telehealth allowed them to ‘get to avoid the hospital space’. They avoided the associated feelings of being in a hospital and felt safe in their home environment. The extra distance from health professionals also allowed them to more freely discuss topics they may not bring up in person.

Diabetes perspectives had a common theme around visual aspects being included in digital health (e.g. use of images in relation to diabetic foot ulcers or monitoring applications including graphs). The inclusion of visuals was reported as very useful:

It produces an average for the beginning period which is customisable, so I can go back three months, 6 months, whatever, so you can immediately spot any trend, the exercise level and the carbohydrates graph, they’re bar charts and very easy to follow …. You can see the pattern all together so I find it very, very useful.²⁸ – [user with diabetes]

Mental health qualitative reviews focused more on personal factors affecting digital health adoption as compared to the other conditions. It was emphasised that a person’s particular mental state be considered each time a digital health session is planned:

In what situation someone is, it is important. If someone is very tired or something, there should be a change to rest before those sessions¹³ – [user with mental health condition]

Users with mental health conditions also really valued active engagement versus passive:

Something you can interact with is much better. Reading a book for a start off, if you are manic or depressive already is really difficult, really difficult¹³ – [user with mental health condition]

Discussion

This umbrella review aimed to evaluate the qualitative experiences of people with chronic conditions participating in digital health. Findings emphasised the notion that one size does not fit all. Overall, users had positive experiences of digital health; however, there was ‘ambivalence’^29,30 within each individual theme. Ambivalence was not explained by a chronic condition, it was instead explained by personal preference. Some users preferred privacy while others wanted communities; apps were perceived as time saving but also a burden at times; and new information increased user anxiety though using digital health overall was said to be ‘reassuring’. The synthesised findings suggest it is fundamental to have a tailored approach to intervention design, focusing on usability and facilitating positive relationships between the consumer and clinician. Digital health when experienced at its best, builds trust and confidence and leads to greater empowerment to self-manage chronic conditions. These findings can be used by implementers, researchers and healthcare providers to match existing or novel digital health interventions as solutions to specific problems experienced by people living with chronic diseases.

The majority of people living with chronic conditions trust technology at face value and had overall positive experiences with digital health interventions. However, poor usability reduces this trust, and directly impacts user engagement and acceptability of digital health programmes and models of care. A previous review of mobile apps for people with chronic kidney disease identified the major reason for noncompliance typically originates from having trouble using the app or device, even if a majority of users found it feasible.³⁵ Another recent integrative review of mixed methods studies further highlights what influences attitude toward digital health models of care, including its functionality, appearance, its empowerment, autonomy and security, its challenges, and the importance of having user participation in its development.³⁶ A systematic review of qualitative studies on user engagement with digital health found in addition to personal factors such as values and motivation, the quality of the intervention itself also had a major effect on participation.³⁷

People with chronic conditions feel reassured by digital health monitoring and feel less of a chance of ‘slip[ing] through the system’. In order to realise these benefits, however, people with chronic conditions had to have sufficient digital health literacy to participate in the programmes. This posed a major barrier perceived by users included in our review. In some countries, digital health literacy is projected to be one of the most critical challenges for delivering effective and sustainable healthcare this decade.^38,39 Yet, eHealth literacy has not often been measured in previous digital health evaluations, though it especially affects how vulnerable populations interact with the tools.⁴⁰ Future efforts should be targeted towards increasing this literacy to increase participation rates.⁴¹

Intervention design suggestions identified in our review echo previous digital health and chronic disease literature. These include making digital health interventions customisable,⁴² tailoring them to the target population,⁴³ and involving end-users in the design phase.^44–47 This contributes to a diversity of experiences being taken into account, and will more likely result in engaged users. This also encourages equitable access to digital health such as for people living in lower socioeconomic areas, cultural and linguistically diverse communities, people with disabilities, and those with low health literacy.⁴⁸ A user being able to customise their own digital health experience or app features has been shown to not only increase engagement levels, but also the effectiveness of the intervention itself.⁴⁹ Further, co-design with users is advised and it should not only ask users for their perspective, but also take into account the system and context in which it will be implemented.⁵⁰

People with chronic disease expressed that digital health apps were motivating, with reminders helping them to take recommended actions, and with the ability to track their progress and set goals. Users perceived that digital health improved their confidence and ability to self-manage their condition, especially when the information they were being provided with was specific to them. This qualitative perspective on increased self-management is supported by quantitative evidence as well. A recent meta-analysis of 39 randomised controlled trials evaluating digital interventions for diabetes showed users had a significant increase in knowledge of their condition as a result of using the digital health tool.⁵¹ Another systematic review conducted in chronic kidney disease also showed positive outcomes in regards to self-management using digital technologies, such as better controlling blood pressure, and more consistently taking medication.⁵² Despite an absence of patient-reported effects on health outcomes identified in the included reviews, digital health lends itself well to collecting PROMs.⁵³ Future digital health interventions would benefit from using more PROMs, which evaluate from patient perspectives, and could improve quality and safety on a clinician-patient level, a comparative health service level, and even at the population and policy-making level.⁵⁴

Concerns that were raised by digital health users related to both the technology itself, and to the consequences it might have on relationships with health professionals. Logistically, people with chronic conditions are concerned about the accuracy of entered data, and the possibility it could lead to incorrect interpretation from health professionals, as well as general difficulty using technology.⁵⁵ Some users feared that digital health services might jeopardise their interpersonal connections with their medical providers. This is a commonly reported worry of potential digital health consumers,²⁵ and health professionals,⁵⁶ yet we found many users actually expressed improved relationships with their healthcare team. This appeared to be due to a perceived collaborative approach to decision making^28,32,34 and an open dialogue,^13,34 more frequent communication with health professionals than before they were using digital health,^18,19,34 and overall leading to feeling like this contributed to better continuity of care.^18,22

The findings of this umbrella review have several limitations. Firstly, they are reliant on the overall quality of included studies, which at times were lacking multiple authors reviewing data extraction and sufficient quality appraisal of studies. Second, the lack of direct participant quotations available in some included studies means we risked losing the participant voice through interpretation of the data initially, in addition to the umbrella methodology (i.e. a secondary interpretation of the data). There is also a chance of publication bias towards positive user outcomes or feedback, however, we still identify many critiques of various aspects of digital health through our analysis. Thirdly, most included studies were conducted in high-income countries. Care should be taken when applying these conclusions elsewhere. It is possible there has not been as many digital health interventions for chronic disease implemented in low-income countries.⁵⁷ However, we would hypothesise that the unique experiences synthesised in this review would differ from those exclusively represented in low-income countries.⁵⁸ Fourth, despite a wide variety of digital health interventions represented in our review, our results (as well as the reviews we analysed) were aggregated thematic syntheses of these, reporting perspectives on digital health tools in general. We acknowledge that some users may have differing views on some of the less frequently used digital health tools, such as using remote monitoring and mobile applications as compared to replacing in-person consultations with video appointments. Finally, it would be remiss not to note that our investigative team are digital health researchers. While our predefined framework analysis²⁰ attempts to keep our analysis objective and focused, qualitative syntheses are very subjective in nature and we may have inherent investigator bias that impacted the way we interpreted the data. We attempted to mitigate this risk through single investigator data extraction, which was checked for accuracy by a second investigator and using content experts to analyse results for each chronic condition (resulting in four separate analysts) which were all triangulated by three investigators.

Conclusion

There are contrasting user perspectives about what makes the best digital health service for people living with a chronic condition, yet a strong view that these interventions give users feelings of reassurance and increase the ability to self-manage their condition. Digital health can empower and motivate people, but there remain barriers to accessing digital health programmes due to technology literacy issues, affordability, the time burden to participate, and a perceived risk of losing in-person contact. Co-designing digital health can be particularly beneficial for providing more equitable access such as for culturally and linguistically diverse populations. A strong continued uptake, favourable consumer perception, genuine consumer engagement to maximise usability, relationships and tangible investment into this space are all contributing to the continued growth of digital health. Future research should go beyond only sampling consumers’ qualitative experiences, or conducting clinical trials on effectiveness, and should instead incorporate PROMs in real-world contexts. Digital health interventions for people with chronic diseases should also be co-designed with users, keeping tailoring and customisation at the forefront as users are less interested in engaging with a one-size-fits-all approach.

Supplemental Material

sj-docx-1-jtt-10.1177_1357633X221119620 - Supplemental material for Digital health experiences reported in chronic disease management: An umbrella review of qualitative studies

Supplemental material, sj-docx-1-jtt-10.1177_1357633X221119620 for Digital health experiences reported in chronic disease management: An umbrella review of qualitative studies by Monica L Taylor, Emma E Thomas, Kathryn Vitangcol, Wolfgang Marx, Katrina L Campbell, Liam J Caffery, Helen M Haydon and Anthony C Smith, Jaimon T Kelly in Journal of Telemedicine and Telecare

Footnotes

Acknowledgements

The authors thank Christine Dalais and Nicole Rayner who provided expert advice and assisted with the search strategy and collection of publications. We also acknowledge the work of Roshni Mendis in helping create the diagram which summarises relationships between themes.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article. Jaimon Kelly was supported by a National Heart Foundation Postdoctoral Fellowship (grant nos. 105215, 106081).

ORCID iDs

Monica L Taylor

Emma E Thomas

Liam J Caffery

Helen M Haydon

Anthony C Smith

Jaimon T Kelly

Supplemental material

Supplemental material for this article is available online.

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