A Qualitative Study of Patients’ Perspectives regarding Digital Health Technology to Support Self-management and to Improve Integrated Stroke Care: the [name deleted to maintain the integrity of the review process] study (Preprint)

BACKGROUND Stroke is a leading cause of death and long-term disability [1]. In 2017, there were an estimated 9.53 million prevalent stroke cases in the European Union (EU) and this number is expected to rise to 12.11 million by 2047 [2]. Stroke patients often experience long-lasting physical and psychological consequences after stroke which can result in disruption of cognitive and emotional functioning and social relationships [3-5]. Post-acute stroke care aims to support restoration of a patient’s functioning, including access to ongoing diagnostics, therapy, rehabilitation, psychological support, and self-management strategies [6]. Rehabilitation, including physical therapy, speech and language therapy, and occupational therapy can improve mobility, communication skills, and activities of daily living in stroke patients [7, 8]. The Action Plan for Stroke Europe recommends a documented plan for community rehabilitation and self-management support for all stroke patients including periodic reviews to adjust rehabilitation and other needs over time [6]. However, due to budget constraints rehabilitation in inpatient facilities are often restricted to a few weeks, and resources are limited in long-term outpatient rehabilitation [9]. In response to these challenges, digital health technology could support existing clinical practice as it provides opportunities to involve patients in the care and decision-making process and to promote self-management amongst patients [10, 11]. The World Health Organization (WHO) has defined digital health as ‘the field of knowledge and practice associated with the development and use of digital technologies to improve health’ [12]. It includes a wide range of digital technologies for health such as Information and Communication Technology (ICT), mobile wireless technology, artificial intelligence, big data and robotics [12]. One example is telerehabilitation for stroke care which can be delivered via robotics, virtual reality, commercial gaming devices and communication tools, such as videoconferencing and telephoning [11]. It can be used to make rehabilitation training accessible for patients, especially for those living in remote areas [9, 13]. A recent Cochrane review found moderate-level evidence that telerehabilitation is more effective or similarly effective compared to in-person rehabilitation [14]. In addition, previous studies indicate that mobile apps can support patients by, for example, physical activity monitors to avoid sedentary behavior [15], providing content for stroke education [16] and sending medication reminders through text messaging [17]. The majority of commercial apps designed specifically for stroke patients and/or their caregivers focus on activities to help improve language and communication difficulties [18]. Furthermore, digital health technologies could support successful integrated care by facilitating good communication of information with patient and between stroke care providers [19]. The involvement of various disciplines, institutions and organizations in stroke care, such as hospitals, rehabilitation centers, and home care providers, requires processes of linking and coordinating services to overcome fragmentation. Although previous pilot studies on digital health interventions for stroke patients suggest that technology could be a meaningful tool for post-acute stroke care [20-22]. there might be barriers constraining the adoption and acceptance of technology in clinical practice and by end users such as privacy concerns, challenges regarding the usability, and the perception that there is no need for health-related technology [10, 23]. In this regard, co-design enables patients, their caregivers and healthcare staff to reflect on their experiences of a service and to identify improvement priorities [24]. Furthermore, co-design ensures digital technologies are tailored to the needs and preferences of end users regarding content and usability [25]. As part of the [name deleted] study [26], a co-design approach was undertaken to develop value-based integrated care supported by ICT. This study uses data from co-design sessions with stroke patients. The aim of this study is to explore what stroke patients’ perspectives are towards how digital health technology could support self-management regarding health and well-being, and integrated stroke care. OBJECTIVE The aim of this study is to explore what stroke patients’ perspectives are towards how digital health technology could support self-management regarding health and well-being, and integrated stroke care. METHODS Study design A qualitative study design was undertaken [27]. We conducted a semi-structured interview study to gain an in-depth understanding of patient perspectives [28]. Semi-structured interviews were used to ensure a flexible structure of follow-up questions in exploring patients’ thoughts and experiences [29]. This study was conducted in Rotterdam, The Netherlands, as part of the larger [name deleted] study [26]. The [name deleted] project aims to develop and implement efficient outcome-based, integrated health and social care for older people with multimorbidity, and/or frailty, and/or mild to moderate cognitive impairment in seven sites (Athens, Greece; Coimbra, Portugal; Cork/Kerry Ireland; Rijeka Croatia; Rotterdam, the Netherlands; Treviso, Italy; and Valencia, Spain). The Medical Ethics Committee of Erasmus MC University Medical Center in Rotterdam, The Netherlands, declared that the rules laid down in the Medical Research Involving Human Subjects Act (also known by its Dutch abbreviation WMO), do not apply to this research proposal (reference number: MEC-2021-0866). Recruitment Patients were purposively sampled from a single-site large academic hospital in Rotterdam, The Netherlands. Purposive sampling was used to include patients with a variety of background characteristics in terms of sex, age, time since stroke and severity of stroke [30]. Patients’ eligibility for the study was assessed by a physician-researcher of the Department of Neurology by screening electronic patient files. The inclusion criteria were as follows: (1) diagnosed with ischemic stroke (first ever or recurrent) within the past 18 months at the time of recruitment; (2) community-dwelling (not in long-term care) at the time of recruitment, and (3) able to provide written consent to participate in this study. Patients who did not speak Dutch or had severe communication difficulties were excluded. An information package with an invitation letter, an information sheet, informed consent form, and prepaid envelope was distributed by post to eligible patients. Interested patients who returned the signed informed consent form to the researchers were contacted to plan the interview. Data collection Patients were interviewed between December 2020 and April 2021 by the first author (EB) and a research assistant. Due to the COVID-19 pandemic, all interviews were conducted by telephone. The interview guide included one open-ended question: How can digital solutions support you to manage your health and care? We asked participants to share their associations regarding digital solutions used in health care and what would be useful for them. Several follow-up questions regarding the characteristics of the technology and foreseen barriers to use the technology were asked to deepen the conversation (see Appendix). As part of the interview, patients were asked to complete a short questionnaire about their characteristics, including age, living situation, time since stroke, first ever or recurrent stroke, perceived health, and technology use. Interviews lasted between 25 and 45 minutes, were audio-recorded and transcribed verbatim. Data analysis Thematic analysis was conducted [27], using the software program NVivo, version 12. The process was based on the six phases of thematic analysis described by Braun and Clarke (2006): familiarization with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the final analyses [27]. Thematic analysis allowed research findings to emerge from the raw data without imposing pre-existing assumptions on the setting under inquiry [27]. Two researchers (EB, DC) independently read the transcripts. Separately from each other, the researchers applied inductive coding with a focus on experiential claims, needs and preferences regarding their health and social care and digital health technology. Subsequently, the two researchers discussed initial codes and patterns in the data. Relevant coded data extracts were clustered into potential themes and sub-themes. Themes were identified when they appeared consistently in a number of transcripts. Identified themes and sub-themes were reviewed and discussed by the research team to ensure they are coherent. If necessary, recoding was performed. The analysis resulted in three final themes. A selection of quotes was translated into English using forward and backward translations. RESULTS Sample characteristics The final sample consisted of 36 participants (15 women and 21 men) with two-third of participants aged 70 years or older. Time since stroke onset was 1 year or more for 72% of participants. Among the 36 participants, 30 (83%) had their first ever stroke. Most of the participants use the internet every day (72%), own a smartphone or tablet (86%), and use apps (81%). Participant characteristics are further described in Table 1. The themes that emerged from the interviews are described below: (1) attitudes towards using digital health for care, (2) suggested features of digital health technologies, and (3) suggested user interface design features of digital health technologies. Table 1. Sample characteristics (N=36). Characteristics Value Gender, n (%) Female 15 (42) Male 21 (58) Age, n (%) 50-59 2 (6) 60-69 10 (28) 70-79 16 (44) 80-89 7 (1) 90-99 1 (3%) Living alone, n (%) Yes 11 (34) No 25 (66) Time since stroke, n (%) 6-12 months 10 (28) 12-24 months 24 (66) >24 months 2 (6) First ever stroke, n (%) Yes 30 (83) No 6 (17) Perceived health, n (%) Good 16 (44) Fair 15 (42) Poor 2 (6) Missing 3 (8) Computer or laptop, n (%) Yes 30 (83) No 3 (8) Missing 3 (8) Use of internet, n (%) Never 0 (0) Once or twice a month 0 (0) Once or twice a week 1 (3) Multiple times a day 6 (8) Every day 26 (72) Missing 3 (8) Smartphone or tablet, n (%) Yes 31 (86) No 2 (6) Missing 3 (8) Use of apps, n (%) Never 4 (11) Once or twice a month 2 (6) Once or twice a week 2 (6) Multiple times a day 4 (11) Every day 21 (58) Missing 3 (8) Theme 1: Attitudes towards using digital health for care Analysis revealed diversity in attitudes amongst patients towards using digital health to support their self-management and improve the care they receive. Most participants viewed digital health as a product or service, such as an online portal to manage their care, were believed to be convenient and valued for their ability to access relevant health information: Yes, that [patient portal] is certainly useful. I think it is quite convenient to be reminded of your doctor’s appointment the day before. I have my agenda on my iPhone to be able to receive notifications in case I forget an appointment. P07 Other patients mentioned they experienced no desire or need to use digital health to self-manage their health and care. These participants preferred to have in-person physical contact with their health care professional rather than receiving care using technology: I would rather have physical contact to explain what I am thinking or feeling. No, I am not in favor of technology. At least, it depends what it concerns, but with regard to my health I prefer to have someone physically attending. P05 You have to be able to look each other in the eyes. This allows you to see whether your complaints are taken seriously and if the physician is listening. [..] it has to be personal by talking to each other in-person and not via video call. P02 Theme 2: Suggested features of digital health technologies This theme consists of the features patients suggested to include in future digital solutions to support their self-management and to improve the care they receive. Three elements have been identified: (i) health information requirements, (ii) access to a personal health record (PHR), and (iii) rehabilitation support. Some patients suggested to include educational features about their condition. More specifically, they expressed the need for information about the causes of stroke, medication, prognosis, and follow-up care: I have had this prescription from my physician. I received the medication, it had the name on it, but what does it do exactly taking such a pill? P36 I thought: what the hell happened to me? And then they [health care professionals] are going to tell you all about it. I thought okay, sure but I just did not know. So, in little chunks, I asked [the nurse] something every time. P16 Patients also emphasized it was difficult to navigate the internet in their search for relevant information. A central online library, preferably hosted by the hospital, with credible information was suggested for stroke patients: Some sort of digital information channel which is centrally regulated by the hospital and the rehabilitation center. It should include clear information that serves the needs of stroke patients. P22 A few patients suggested access to a PHR to manage information about their health and care. Patients identified the potential benefits of PHRs by being able to access up-to-date information about their condition, such as medical files and prescribed medications: I would like to see something in which you can view your medical files, but also your appointments, reminders, and a short report of the consultation you have had. P01 Patients also discussed how digital solutions could potentially support rehabilitation at home. More specifically, patients wanted tips to increase their physical activity or support to perform exercises as part of their rehabilitation program: I would like to have tips about exercises I can do from home. I have tried this exercising program on TV, but that is not feasible for me as my balance is not so good. P27 In addition, participants discussed a lack of understanding regarding the exercises they are intended to perform in their home setting. A number of participants suggested that the use of visual aids (i.e., pictures or videos) to explain rehabilitation exercises would help them understand and to engage with their training at home: Usually, I recognize the exercises but sometimes I forget how to perform the exercise. For example, do I have to stand on one leg or both? [..] I like this app that shows pictures of the exercises, it also provides written text and audio explaining how to perform the exercises. P32 Theme 3: Suggested user interface design features of digital health technologies Patients offered suggestions for the user interface of future digital solutions. Some patients expressed the need to tailor digital health technologies to older age in order to ensure technologies are acceptable to potential users: Adapt it [the technology] to our age group. Younger people grow up with these technologies in a playful way, but I had to learn using these technologies at later age. It should not be too complicated. P05 Participants proposed that technologies need to be designed in a way that are easy to use without consciously thinking about how use them. This appeared to be an important factor in incorporating technology in their daily life: There are no standards mobile apps have to comply to. For example, having always a button at the top right to log out. It depends on the developers, make it intuitive. P01 Furthermore, participants viewed typing written text in a mobile application as difficult. Consequently, some patients preferred to use a device with a larger screen such as a tablet device or computer. Some participants suggested that it would be helpful if users could log into applications on various devices: I have an iPhone, a small one, which means I am always pressing next to the letters with my fingers. So, to type on my phone is inconvenient. I prefer to use the tablet or computer. P28 Another suggestion was to allow for flexibility and to ask users about their interface preferences. For example, some patients experienced push notifications of mobile applications as annoying: I think you have to do it [being physically active] yourself. In the morning, when I go shopping, I walk my round. It is not something that has to be done, it happens automatically. Notifications won’t help much, I think. It is all on command, on time.. no. P33 Furthermore, introducing new design features in relation to technology was perceived by patients as hard to cope with. However, most patients accepted these challenges or asked a family member for assistance: Some apps you get used to and those you like. Other apps require an update. Once the update has been completed, you do not recognize them anymore. Then I think: Oh no, I will wait for the next update because this is not working for me. P01 CONCLUSIONS This study aimed to explore what stroke patients’ perspectives are towards how digital health technology could support self-management regarding health and well-being, and integrated stroke care. This qualitative study facilitated a deeper understanding of stroke patients’ technology use and ways in which digital health technology can support stroke care delivery and improve patients’ health. Consistent with previous studies, stroke patients used digital technologies, such as the computer or smartphone, to manage everyday life (e.g. reminders, calendar) and to seek information [10, 31]. However, using mobile devices to feel safe was not a theme that emerged from our analysis [10, 31]. Unlike previous studies focusing on exploring the experiences with digital technologies [10, 31] or testing a prototype technology [32-34], our study adds to the literature by exploring how digital health technology should be designed in order to support patients. Three themes emerged from the analysis: (1) attitudes towards using digital health for care, (2) suggested features of digital health technologies, and (3) suggested user interface design features of digital health technologies. The findings showed mixed attitudes of patients towards using digital health to support their self-management and to improve the care they receive. Patients who considered digital health as irrelevant, shared the concern that technology would replace physical contact with their health care professional. Previous studies indicated that experiencing the benefits of digital health technology influences its acceptance and use [35, 36]. This requires that patients have knowledge on the potential benefits of digital health technology to provide assistance and support [37]. The findings of the analysis emphasized the need to communicate concrete benefits of digital health to the patient and, at the same time, reduce technology-related concerns such as challenges regarding usability [38]. The varying views also highlighted that a ‘one size fits all’ is not appropriate for this patient population. Suggested features of digital health technologies by patients included (i) an easily accessible online library with relevant information regarding stroke-related health and care issues, (ii) a PHR by which patients can retrieve and manage their own health information, and (iii) a physical exercise module to empower patients to organize rehabilitation support at home. The findings emphasized the importance of tailoring information to patients’ needs and concerns, as described in earlier studies [39, 40]. Therefore, features of digital health technologies should facilitate a personalized approach to meet individual needs. Patient portals have the potential to enhance patient engagement in managing their health by allowing access to, for example, discharge summaries, medications, lab results, and secure patient-provider communication [41]. Furthermore, patients brought forward that digital health could potentially support rehabilitation at home. The use of digital health technology is proposed as a useful tool to effectively deliver rehabilitation care, including the use of brain games, virtual reality and telerehabilitation [14, 42]. Suggestions for the user interface design features of digital health technologies illustrated the need to consider older patients’ preferences in all aspects of design. Patients indicated technology should be user-friendly and aligned with their ability to use technology, which is consistent with other studies [37, 43]. More specifically, patients emphasized the need for design elements that favor simplicity; easy to use and intuitive. Previous studies testing the usability of digital interventions for stroke patients, show that a simple design is highly valued by patients [32, 34]. In addition, some patients noted that they often felt forced to engage in new technologies by push notifications, which was perceived as inflexible. It was suggested to ask users about their interface preferences before they start using the technology. The large diversity in patients’ familiarity to use digital technologies has been reported in previous studies [37, 44]. Understanding user characteristics of stroke patients by focusing on age-related and disease-specific ability changes, including sensory, physical, and cognitive abilities is essential to develop user interfaces that are acceptable and engaging [45]. Providing technical support to older patients tailored to their needs can enhance their digital skills and address barriers regarding usability. A limitation of this study was that patients were recruited by sending an invitation letter to ask if they were willing to participate. This may have resulted in selection bias in which vulnerable patients are underrepresented. However, our sample also included patients with poor self-perceived health, therefore this appears not to be a major problem. Furthermore, due to the COVID-19 pandemic telephone interviews have been conducted instead of in-person interviews which may have garnered further information. The COVID-19 pandemic may have positively altered patients’ perceptions of digital health as during the pandemic technology became essential to social interactions in general, and patient-provider communication specifically. Moreover, the study was conducted within the specific context of the Netherlands, therefore the findings may not be transferable to other settings. To increase the generalizability of our findings, we have reached variation in our sample in terms of patient characteristics (e.g. sex, age, severity of stroke). A strength of this study was our exploratory approach using a rigorous qualitative methodology. This allowed patients to think freely about their needs and preferences regarding digital health without commenting on an existing prototype. However, particularly for non-frequent users of digital technologies, it was hard to bring in own suggestions. To address this the interviewer asked participants to share their associations regarding digital solutions used in health care and what would be useful for them. Furthermore, our study places emphasis on the requirement to include patients early in the design process of digital interventions. This involvement is considered crucial to ensure that the intervention is meaningful to the population(s) it will serve [46]. Implications for future research and technology development Findings of this study imply that future digital health technologies could support post-acute stroke patients in managing their health and care by taking a personalized approach and adapting technologies to their abilities. In this study, input was gathered from stroke patients prior to the development of the technology product or service within the [name deleted] project. Future research is needed to explore the suggested features of digital health technologies in more detail. It is recommended to use an iterative co-design approach involving relevant end users, including stroke patients, their informal caregivers and health and social care professionals. Co-design ensures digital solutions are tailored to stroke patients’ needs and preferences regarding content and usability as it allows for continuous feedback and interaction between designers and end users [24]. In addition, this study also identified potential barriers to using digital health technologies that can be considered during design to optimize its uptake, usability and usefulness. The next step within the project is to translate the concept features and user requirements that resulted from this study into improved care supported by digital health technologies for stroke patients. Conclusions Variability exists in stroke patients’ previous perspectives towards how digital health technology could support self-management regarding health and well-being, and integrated stroke care. Easy access to relevant information regarding stroke-related health and care issues, a PHR, and rehabilitation support at home were mentioned by patients as the main features to include in future digital solutions for stroke care. In designing digital health technologies for stroke patients, the need for simplicity should be emphasized. Our study supports that designers of digital solutions should have a holistic view and complete understandings of older stroke patients by understanding their user requirements using a co-design approach. The findings of this study provide insight in the needs and preferences of stroke patients for using ICT to manage their health and care, which serve as touch points that can be explored further in co-design sessions. INTERNATIONAL REGISTERED REPORT RR2-10.1186/s12877-022-03333-8