Abbreviations
- TIA
Transient Ischemic Attack
- AF
Atrial Fibrillation
- HF
Heart Failure
- ECG
Electrocardiography
- ELR
External Loop Recorder
- ICD
Implantable Cardioverter Defibrillator
- LVAD
Left Ventricular Assist Device
- MCOT
Mobile Cardiac Outpatient Telemetry
- ILR
Implantable Loop Recorder
- ICM
Implantable Cardiac Monitor
Context and Policy Issues
In Canada, stroke is one of the leading causes of death and disability. It is defined as the sudden onset of a neurological deficit that is attributable to a focal vascular cause such as a clot or hemorrhage in a blood vessel that supplies the brain.1 Transient ischemia attacks (TIAs), also known as “mini-strokes,” are a type of a neurological deficit caused by insufficient blood flow to the brain by an obstruction in an arterial source that resolves on its own within 24 hours.2 In the first 90 days, the risk of stroke following a TIA is between 10% and 20%.3 Approximately 62,000 patients with stroke are treated in Canadian hospitals annually and about 405,000 Canadians are living with the symptoms of stroke.4 Heart failure (HF) is related to stroke and occurs when the heart is damaged and unable to pump sufficiently blood to meet the body’s demand. In Canada, 600,000 Canadians are living with HF and 50,000 are diagnosed with HF annually.5
Ischemic stroke is a type of stroke caused by an obstruction in a blood vessel that supplies blood to the brain. Obstructions that lead to ischemic stroke are most often caused by cerebral vessels themselves, an embolus from another arterial source, or the heart.1 Approximately 10% to 40% of ischemic strokes are identified as cryptogenic because they do not have a known cause.6–8 In older patients, intermittent atrial fibrillation (AF) may be a prominent cause of cryptogenic stroke.9 Intermittent AF is a type of episodic arrhythmia that resolves spontaneously within a few days.10 However, intermittent AF can form blood clots that may lead to an ischemic stroke.10
There are knowledge gaps in the treatment, management, and prevention of cryptogenic stroke, AF, and HF leaving patients at a risk for recurrent strokes, permanent disability, or death. Cryptogenic stroke can be challenging to diagnose as the signs of intermittent AF may only be visible for a few days and/or no symptoms may appear at all.11,12 Furthermore, the diagnostic tests performed to detect stroke may not capture any signs of intermittent AF. Current treatments for AF can reduce the risk of stroke. However, since AF treatment can increase the risk of adverse events such as bleeding and drug interaction, patients must receive a diagnosis of stroke before undergoing treatment.13
Evidence indicates that the detection rate of intermittent AF and HF increases with longer cardiac monitoring time.14 In-patient cardiac monitoring that occurs within 48 hours following a stroke identifies only a fraction of intermittent AF cases.15 Long-term electrocardiography (ECG) monitoring using outpatient cardiac monitoring can identify intermittent AF that is undetectable by diagnostic tests performed in the hospital.13 To this end, outpatient cardiac monitoring devices may provide higher mobility to patients and some also offer the ability to transmit data wirelessly to their clinic, while all allow for longer-term surveillance outside the hospital setting, reducing the burdens associated with managing stroke and increases the detection rate of intermittent AF and HF. Examples of outpatient monitoring devices include: ambulatory Holter monitors, external loop recorders (ELRs), implantable cardioverter defibrillator (ICD), left ventricular assist device (LVAD), mobile cardiac outpatient telemetry (MCOT) devices, and implantable loop recorders (ILRs).16 Some outpatient cardiac monitoring devices such as ILRs are considered implantable because they are inserted under the skin and can remain inside for up to three years.15
Due to the variety of cardiac monitoring devices available to patients with different features and functionality, there is a need to understand how patients live with and make decisions about each monitor. This report reviews the qualitative literature describing patient preferences and experiences using and living with various outpatient cardiac monitoring devices.
Research Question
How do patients experience, make decisions around, and live with outpatient cardiac monitors for the diagnosis of stroke, atrial fibrillation, and/or heart failure?
Key Findings
The onset of cardiac monitor use accompanies many life changes and new personal responsibilities. For some patients, these responsibilities can spur motivation to engage in self-management and health care decision-making. For other patients, new responsibilities can create confusion and uncertainty about how to use their device and communicate with care providers about cardiac self-management. Embedded in these experiences are patients’ expressions of uncertainty and the need for more accurate and timely information about the cardiac monitoring process. Although patients participating in the included studies mentioned more positive than negative experiences to using cardiac monitors, negative experiences were described that stem from uncertainty in how to use the device, treatment options while using a cardiac monitor, available community supports, and the perceived accuracy and reliability of cardiac monitors. As patients engaged with cardiac monitors over time, the benefits to using cardiac devices outweighed the disadvantages. Providing information on cardiac self-management and using monitoring devices may support patients’ ongoing reflection and understanding of their cardiac condition. Information that is provided in a timely and appropriate manner may motivate patients to engage in their own health care decision-making, which they perceived as a central component to maintaining self-management behaviours. However, patients experienced multiple barriers to using the device, many of which were due to their technological proficiency and unique social location. These patients requested additional support either through the system or in-person to use the device. When such support was provided, patients felt relief, reassurance, and confidence, which enabled them to integrate cardiac monitoring into their daily routine.
Methods
Literature Search Methods
A limited literature search was conducted on key resources including Medline in Ovid, CINAHL, the Cochrane Library, University of York Centre for Reviews and Dissemination (CRD) databases, Canadian and major international health technology agencies, as well as a focused Internet search. Methodological filters were applied to limited retrieval to qualitative studies. The search was also limited to English language published between January 1, 2013 and August 17, 2018.
Selection Criteria and Methods
One reviewer screened citations and selected studies. In the first level of screening, titles and abstracts were reviewed and potentially relevant articles were retrieved and assessed for inclusion. The final selection of full-text articles was based on the inclusion criteria presented in .
Exclusion Criteria
Articles were excluded if they did not meet the selection criteria outlined in including duplicate publications, or those published prior to 2013. Primary studies that did not employ a qualitative or mixed- or multiple-method research design were excluded.
Studies were excluded if the study sample included only health care practitioners and/or family and caregivers. Studies that used cardiac monitoring in youth for athletic purposes, fetal heart rate monitoring in pregnant women, and any study in which the participant sample were adolescents and/or pediatric populations (i.e., under the age of 18 years) were excluded. Studies that discussed patient experiences of AF in general, and not specific to cardiac monitoring, were also excluded. One study was excluded because it was conducted in Saudi Arabia, a country with a very different health care context.
Critical Appraisal of Individual Studies
There is no consensus on the merit and most appropriate approach to appraising qualitative studies in qualitative evidence syntheses, in particular rapid syntheses. The use of an appraisal checklist to evaluate quality can be problematic because qualitative publications seldom report sufficient details on the study design and conduct required for a holistic and accurate critical appraisal. In qualitative research, quality may actually reflect how methodological details are reported in a study manuscript rather than its design and conduct. We have detailed these perspectives of quality appraisal in qualitative research in a separate publication.17 Due to these reasons, we focus quality appraisal on how and what studies have reported in the manuscripts.
The primary qualitative studies and the qualitative component of mixed- or multiple-methods studies included in this review were critically appraised by one reviewer using the Quality of Reporting Tool (QuaRT)18 as a guide. Rather than evaluating the study design and conduct quality, QuaRT focuses on how an article reports its methodological details related to four components of a study that are commonly described in qualitative manuscripts: question and study design, selection of participants, method of data collection, and methods of data analysis. Summary scores were not calculated for the included studies; rather, a review of the strengths and limitations of each included study were described narratively and detailed in Appendix 4.
Data Analysis
Descriptive analysis
A descriptive analysis was conducted to characterize the studies according to important study design and patient characteristics. Descriptive data included author, date and country of publication, research objectives, qualitative study design, data collection strategies, study setting, type of cardiac monitor (if reported), and participant characteristics such as age range, proportion of males, and inclusion criteria. At this stage, the research questions and objectives were reassessed and slightly modified to be more aligned with the available data, while respecting the original intent of the inquiry.
Analytic approach
The Qualitative Research Integration or Qualitative Meta-synthesis approach was used to guide the data extraction and analysis.19 This approach is a type of qualitative evidence synthesis (QES) that aggregates the findings across included studies while simultaneously retaining their original meaning. The findings from studies are compared and contrasted to develop an integrative interpretation of the phenomenon. For this review, we employed a staged coding approach informed by constructivist grounded theory.20 An emphasis was placed on striving for both an aggregative and interpretive output of included studies while maintaining relevance to the policy issue by tailoring how the findings were represented and reported to the research objectives of the HTA.
QES concentrate on the thought process, conclusions, and discussions of the authors, which were the primary outputs of data extraction and analysis of this review. Quotes, metaphors, and original excerpts of participants’ dialogue were also extracted and used to substantiate the overall findings. Data extraction was limited to the results, discussion, and conclusion sections because previous authors have found discrepancies between different parts of a qualitative manuscript.21 N-Vivo 1122 was used for data management and extraction for all stages of analysis. Data extraction proceeded to code maximum context around relevant data. Sensitive extraction may omit relevant context, which may inadvertently influence the final interpretation by determining the flexibility of later coding cycles. Therefore, extraction was less sensitive and relevant data was extracted with its context.
One coder with experience conducting different types of QES proceeded through two stages of coding. In initial coding, the coder worked through two studies to understand, problematize, breakdown, and reform themes through a line-by-line analysis that identified the descriptive and interpretive meanings of data as well as the context and intentions of findings. The coder remained open and moved quickly through the data to broadly understand the concepts and themes and develop a preliminary coding schema, which included not only the codes that were most salient but also those that were deemed theoretically and conceptually relevant to the policy issue. The preliminary coding schema was modified as coding proceeded to be more aligned with the research question.
In focused coding, the coder used the coding schema as a guide to extract relevant data from the remaining studies. The focused coding process was divided into three categories that were determined to capture the essence and breadth of the available data. The coder proceeded to extract relevant data for each category through multiple, iterative cycles towards theoretical saturation. Throughout this process, the coder remained open to new codes and different ways to represent emergent categories, themes, and concepts. The coder reflected on hidden or emerging issues in the data regularly and documented them in memos.
As focused coding progressed, categories became more comprehensible and multiple themes within each category were identified. At this point, the coder re-analyzed all three categories and its associated themes to develop a narrative summary that synthesized the concepts contained in the themes of each category. Once a narrative summary was generated for each category, the coder collated the summaries to produce a more integrative and holistic interpretation of findings that provided tailored evidence to the policy issue.
Summary of Evidence
Quantity of Research Available
A total of 748 citations were identified in the literature search. Following screening of titles and abstracts, 724 citations were excluded and 24 potentially relevant reports from the electronic search were retrieved for full-text review. 17 articles were excluded for various reasons and seven were included in this review. From the grey literature search, 35 potentially relevant publications were retrieved, of which 33 were excluded and two were retrieved for full-text review. These two publications met the inclusion criteria and were included in this report. In total, nine articles were included in this analysis. Six articles were directly relevant to patient experiences with cardiac monitoring, two were about patient experiences with different treatments for AF including cardiac monitoring, and one article discussed the needs of patients with AF. Appendix 1 presents the PRISMA23 flowchart of the study selection.
Summary of Study Characteristics
Characteristics of the included studies are summarized below, and details are available in Appendix 2, .
Study Design (and Data Collection)
Some study authors identified using a particular qualitative study design, while others reported an analytic approach or approach to data collection without naming a specific study design.
Among the nine studies included in this review, two did not identify with a particular qualitative design,24,25 two employed grounded theory,26,27 and one employed each of: phenomenology28 ethnography,29 interpretive description,30 content analysis,31 and thematic analysis.32 Four studies used either a multiple-methods26,28,29 or mixed-methods approach.32 Five studies used semi-structured interviews as a data collection strategy,24,26–28,31 two used focus groups and semi-structured interviews,25,32 one used a combination of participant observation and semi-structured interviews;29 and one analyzed messages on an online discussion forum about stroke.30
Country of Origin
Three studies were conducted in the United Kingdom,27,29,32 two were conducted in each of Australia24,25 and Canada,26,30 and one study was conducted in each of Denmark28 and Sweden.31
Patient Population
Characteristics of study participants are summarized below and details are available in Appendix 3, .
For included studies, participants ranged in age from 2129 to 9924 years of age. The proportion of males in study samples varied from 51%24 to 88%.25
Participants in these studies were recruited from a variety of settings. Six studies recruited participants from clinic or hospital settings,24,26–29,31 which included a tertiary care cardiac centre, primary care practices, acute care centres, and outpatient clinics. One study recruited participants from each of the following: stroke support group32 and a local community.25 One study did not recruit participants but collected data from messages on an online discussion forum about stroke.30
The majority of studies included patients who were diagnosed with either atrial fibrillation25,26,31 or heart failure.27,29 One study included patients with stroke or TIA,32 one study identified patients with chronic heart problems,28 and one study included older patients visiting their primary care clinic for a regular checkup.24 One study analyzed the messages of patients on an online discussion forum on stroke.30
Five out of nine studies did not specify the cardiac monitoring device in their study.25,28,30–32 Of the four studies that did identify a cardiac monitoring device, two studies mentioned a mobile-health monitoring system,27,29 one study mentioned AliveCor Heart Monitor for iPhone,24 and one study included pacemakers, cardioverter defibrillators, or cardiac resynchronization therapy defibrillators.26
Summary of Critical Appraisal
A summary of the strengths and limitation of each study can be found in Appendix 4.
All studies in this review clearly stated the research objectives in the abstract or introduction/background sections of the article. Six studies clearly identified with a qualitative study design and described how it was applied to address the research objectives.26–31 Three studies were unclear about which qualitative study design was used,24,25,32 and one study identified a qualitative design but did not justify the choice.27 One study used qualitative methods to engage participants in an HTA about cardiac monitors,26 and the qualitative portion of that HTA was included in this review.
Seven studies identified and recruited participants with explicit eligibility criteria.24–29,31 However, two studies were unclear about how participants were selected and recruited.30,32 Two studies did not describe the aggregated characteristics of included participants.28,30
For data collection, five studies identified a data collection approach, justified the choice and described how it was specifically applied in the study.25–27,30,31 Two studies used multiple data collection strategies.28,29 Four studies required elaboration on how the strategies were applied in the study.24,28,29,32 In particular, one study was unclear about which data arose from which data collection strategy in a mixed-methods study,29 and three studies reported minimal discussion on how qualitative data from different data collection strategies contributed to the overall conclusions or how the qualitative data substantiated quantitative data in mixed-methods studies.26,29,32
For data analysis, six studies provided an adequate description of the analytic approach and processes,25–28,30,31 whereas three studies identified an analytic approach but did not justify the choice or elaborate on the specific procedures that guided their data analysis.24,29,32
Summary of Findings
In this section, we describe patients’ experiences and perspectives living with and making decisions surrounding cardiac monitors, as represented in the primary literature. This section is grouped under three categories: Information Acquisition, Patient Engagement, and Usability and Functionality of Cardiac Monitoring Devices. Each of these categories contain multiple themes that identify patients’ perspectives on cardiac monitors and explain how patients navigate through challenges living with and adjusting to cardiac monitoring devices in their daily lives.
Information Acquisition
Information was a common theme embedded in patients’ expressions and experiences of cardiac monitoring. Patients desired more information in general and more information that is timely, accurate, reliable, and relevant to their cardiac condition. Patients also described how the information provided to them by care providers should take into account their unique medical needs and integrate their preferences for care. In this section, two themes are discussed: (1) uncertainty/lack of information and (2) need for more information.
Uncertainty/lack of information
Patients described regularly experiencing uncertainty in different aspects of the cardiac monitoring process. Some patients felt that they did not have the right type or amount of information to manage their cardiac condition effectively and use their monitoring device accurately.24,25,28,29,32 This realization, without adequate support from care providers, increased the uncertainty in patients with regards to how to monitor their cardiac condition appropriately.25,28
In multiple studies, patients identified different sources and causes of uncertainty. Patients experienced uncertainty from unexplainable symptoms that confused their care providers, discrepancies between what they experienced as symptoms and what is measured by the device, waiting for the monitoring device to collect sufficient data to establish a baseline for their assessment, lack of regular communication with a clinic, and unmet expectations of care.24,25,27,28,32 For some patients, there was a link between uncertainty in cardiac monitoring and the lack of adequate information about their cardiac condition. These patients reported that they had minimal information about what cardiac monitoring may reveal28 and how to interpret monitoring data.27 One patient stated: “…the uncertainty is the worst part. It can eat you up from the inside, because you are in a position where all you can do is wait for an attack or episode to happen before you can get any diagnosis or indication of what is wrong with you.28 For this patient, uncertainty challenges their identity and personal understanding of their cardiac condition. If uncertainty is not identified, appraised, and managed appropriately, it can affect all aspects of patients’ lives, reducing their motivation and commitment to self-monitoring and self-management.
As a way to mitigate uncertainty, patients in three studies expressed a desire for accurate and reliable information about their cardiac condition at an appropriate time and using delivery methods tailored to their circumstances.25,28,31 These patients suggested that information be provided in a way that acknowledges different learning styles, avoids medical jargon, uses plain language, and explains key terms in educational materials.25,29
Need for more information
Patients in multiple studies reported a general need for more information about how to use their cardiac device, treatment options while using a cardiac monitor, and the distinct aspects of the cardiac monitoring process.25–31 For some patients, the need for information was fueled by the emotional distress they experienced from uncertainty and lack of adequate information.25 Patients described a need for information regarding device accuracy and reliability;25 clarity about the purpose of cardiac monitoring devices;25,28 how to communicate with care providers about their symptoms;31 how to interpret monitoring data;29 how to connect with local organizations and groups that support patients who use cardiac monitors;29 and information about treatment options, medications, and adverse drug reactions.25,29–31
Over time, as patients engaged in managing their cardiac condition and using monitoring devices, their information needs evolved.27 Patients’ need for information was motivated by their comfort and satisfaction with the information they have accumulated and the knowledge gaps that remain in understanding their cardiac condition and the device. For some patients, the strong need for more information decreased when they became overwhelmed with the amount of information provided to them.31 Instead of more information, a collaborative discussion about cardiac monitoring with care providers supported these patients to reflect on and organize the information already acquired, which enhanced the sense of trust and rapport between patient and care provider. For some patients, this may be achieved through affirmation and regular communication with the care provider immediately after experiencing symptoms.26,28,31,32
Patient Engagement
Patient engagement in treatment and device decision-making were central topics raised by patients in the included studies. Patients expressed both positive and negative experiences associated with their engagement in health care, which was linked to how they perceived their personal responsibilities in managing their health through monitoring and their relationship with care providers. In this section, the following themes are discussed: personal responsibilities of self-management, and the relationship between patients and their care providers.
Personal responsibilities of self-management
The start of cardiac self-monitoring presents a change in the day-to-day routine for many patients. For some, this change was so significant that it affected their personal and social identity. Patients recognized that new personal responsibilities will follow the onset of cardiac monitoring. However, patients’ response to these responsibilities depended on their daily routine and social location; whereas some patients found these new responsibilities unproblematic and easy to integrate into their lives, other patients experienced higher stress and frustration26,28,32 associated with an increased burden of using additional technology in daily life.26 For some patients, new responsibilities were embraced26,28,29,32 and the device increased their sense of self-efficacy in managing their cardiac health;27–30 for others, the same responsibilities spurred confusion and concerns about keeping up with these responsibilities in a busy life.26,28,29,32 Patients with high information needs may need additional support when identifying and adjusting to new responsibilities pertaining to cardiac monitoring.
The responsibilities that patients reported include: constantly monitoring their cardiac data;27,29 integrating the device into daily routine activities;27 being informed about their cardiac condition, treatment options, and how to use the device accurately;30 maintaining comprehensive documentation of their symptom experience and medication history;28 knowing when to seek professional help;27 evaluating personal health goals;29 using past experiences with technology to solve the problems with cardiac monitors;27 transmitting data from the cardiac monitor to a clinic when symptoms are experienced;28 calling the clinic to substantiate the device data with their personal experience of symptoms;27,28 ensuring that the equipment is safe and secure when traveling between places;28 and mentioning all relevant information to care providers during a medical consultation.27,28
The relationship between patient and their care providers
The patient-care provider relationship was central to patients’ experiences associated with cardiac self-monitoring. Patients using a cardiac monitoring device reported that they felt more engaged in medical consultations because the device allowed discussions to be focused on monitoring data and tailored to their unique medical needs27–29 However, some patients found that care providers overemphasized device data in medical consultations,28 which gave the impression that patients’ experiential knowledge living with their cardiac condition and using the device was not relevant to their self-management.31 These patients expected individualized and tailored care to their unique medical condition that could only be achieved through a co-reflection on both what is felt by the patient and what is detected by the device.25,27,28
Care providers’ initiative to engage patients in health decision-making was perceived by patients as being positive and motivational.25,27,31 Collaborative decision-making, in particular, increased patients’ feelings of involvement, cooperation, and connection with care providers.31 Furthermore, continuous communication with care providers and medical staff, either in-person or through the device, was perceived as the focal point of shared decision-making by some patients because it provided ongoing support to acquire a deeper understanding of their cardiac condition and maintain positive self-management behaviours.27,28 Moreover, useful, relevant, and regular communication with care providers and medical staff contributed to the sense of relief and reassurance that has been commonly reported by patients using cardiac monitors.25,28,29,31,32
Some patients expressed a need for more regular communication with the clinic26,28,29 and between different care providers involved in the management of their cardiac condition and the data collected by a cardiac monitor.25 Patients reported concerns about their interactions with care providers and medical staff. In general, patients described that they were provided inadequate information from their care provider about their cardiac condition, treatment, and device management.24–26,28,32 In two studies, patients reported that feedback and advice by their care provider were unclear or inconsistent.28,32 As a result, patients experienced hopelessness, uncertainty, and feeling unappreciated by their care provider.28,31,32 In the beginning of their treatment and management, patients expected sympathy and timely feedback from care providers.28 However, due to a perceived lack of adequate, relevant, and consistent communication, some patients came to no longer expect comfort and patient-centred care. In many cases, this was reported to be due to the lack of time and resources available to the care provider to address patients’ personal and social needs.28 Some patients perceived no news as good news and that care providers will only contact patients if it is absolutely necessary.27,28 For others, no news increased uncertainty in whether they are using the device correctly or whether care providers are actually monitoring their data. The latter group of patients experienced greater uncertainty in device use and self-management, which lead to disengagement, hopelessness, and despair in self-monitoring.
Usability and Functionality of Cardiac Monitoring Devices
This section describes the perspectives of patients pertaining to the usability and functionality of cardiac monitoring devices. The following themes are discussed: learning to use cardiac monitoring devices, living with cardiac devices, managing the discrepancy between what is felt and detected, and perceived benefits and disadvantages of using the device.
Learning to use cardiac monitoring devices
Four articles discussed patients’ experiences with learning to use a cardiac monitoring device.26,27,29,32 Upon first exposure to the device, patients and family are required to manage different physical components of the device,28 ensure that it is measuring and transmitting data to the clinic accurately,27 and integrate the device into daily routine activities.29 Learning to use the device may take time for some patients and require support from the clinic, family, and friends.29 Over time, as patients engaged with the technology, they felt more competent and confident with using cardiac devices to monitor their health.29 One study differentiated between three categories of users based on technological proficiency: 1) novice with limited or no experience using technology; 2) competent with some experience using technology for work or leisure; and 3) expert who guides others to use technology for work or leisure.29 Although the learning curve may depend on the severity of patients’ medical condition and their personal circumstances,29 technological proficiency and support from family, friends, and the clinic enabled patients to quickly overcome the learning curve and adjust to using the cardiac monitoring device in daily routine.27
Living with cardiac devices
Five studies discussed patients’ experiences living with cardiac monitoring devices.24,27–29,32 Patients described that they were using these devices as a form of “intermittent self-assessment” or a method for continuous self-monitoring.29 Other patients used the device to adopt and maintain healthy behaviours,29 establish and evaluate exercise and weight loss goals,27 gauge when they need medical attention,29 to support their transition into community care,29 and augment health care decision-making.27
Patients derived a sense of safety, relief, reassurance, and confidence from using a cardiac device because of the perception that they are being constantly monitored by their health care team.28,29 Patients in one article desired for a “double-check” by their care providers to determine whether or not they are using the device correctly; this “double-check” improved patient reassurance and confidence in the cardiac monitoring device.32 One patient mentioned: “I’m quite happy doing it at home, although I think in the very near future I’ll make an appointment with either my GP or practice nurse, to take a reading on site, just to make sure that it’s actually performing accurately. I don’t believe, for one minute, it’s not, but I think a double check would be in order…”.32 This patient, although confident in using the device himself, still desired a double check from his care provider. Other patients were uncertain and concerned about whether their health data was actually being monitored by care providers.32 For some patients, uncertainty was reduced from continuous communication and feedback through the device system25,27–29,31,32 However, patients in three articles expressed a strong need for ongoing support from the clinic and care providers in the form of physical assistance, continuous reminders, and technological guidance.26,29,32
In two instances, patients reported using the device less frequently. First, when patients were communicating with their clinic or care provider regularly, either to establish a baseline for their cardiac condition or to re-evaluate their self-management plan, some patients did not fully understand the purpose or benefits of using the device and perceived the monitoring device as redundant.29 Second, some patients stopped using the device after receiving normal readings on multiple occasions.25,29 For these patients, using the device was linked to its ability to provide timely, accurate, and useful feedback about their cardiac condition.
Managing the discrepancy between what is felt and what is detected
Each patient understands and appraises their medical condition differently depending on their lived experiences with symptoms, engagement with activities of daily living, and general well-being.27 However, these experiences may conflict with the device when experiences do not appear to match with the data collected. In two articles, patients expressed concerns about the discrepancies between what they experienced as symptoms and what the device detected as symptoms.27,28 One article differentiated this discrepancy into three situations: 1) a patient experiences a symptom and the device measures the symptom; 2) a patient experiences a symptom, but the device does not detect it; and 3) the device detects a symptom, but the patient does not experience it.28
Consistency between what is felt and what is detected was expressed as an important concern by patients in two articles.27,28 On the one hand, if there was a consistency between what patients felt and what the device detected, then patients reported positive coping to symptoms.28 However, inconsistency caused frustration, discouragement, uncertainty, and dissonance about their medical condition.28
For some patients, the experience of symptoms was so important to their identity and understanding of cardiac condition that they questioned or ignored the medical advice and feedback from care providers if the advice was not congruent with what they expected or experienced.27 These patients developed their own normal range of cardiac measures based on their experiential knowledge and used the cardiac monitoring device to only maintain physiological indicators rather than adjust lifestyle behaviours.27 Other patients understood that any significant change in health is a combination of what is experienced and what is detected by the cardiac device. These patients recommended that all discussions with care providers about device data should combine both personal experience and device data, allowing both the patient and care provider to increase their shared understanding of the patients’ unique medical needs and thereby provide tailored feedback to improve their health.28
Perceived benefits and disadvantages of using cardiac monitoring devices
In the studies that discussed cardiac monitoring devices, the reported benefits to device use outnumbered the reported disadvantages. The disadvantages that were mentioned by patients were embedded in their negative experiences associated with using technology in general and accessing the health care system. For some patients, the disadvantages to device use decreased and benefits became more salient as patients engaged with the technology over time.29
Relief and reassurance were central motivations for patients in all included studies. Patients both sought and derived relief from using a cardiac monitoring device. In some instances, patients described the monitoring device as a “safety net” because it provided them with accurate, reliable, and automatic information to monitor their health.26,28,29,32 For some patients, reassurance was related to the view that a care provider is monitoring their cardiac condition at a distance.26,29 These patients perceived self-monitoring as a way to relegate the need to be constantly vigilant about their health to care providers, which improved their quality of life and reduced some of the burdens associated with managing a heart condition.26 One patient expressed that: “It actually relaxed me to know that I have this [the device], that it would help if something happened…if I had another heart attack they would know about it right away and I would know about it right away too. They could monitor it. That does relax me a lot, knowing that there’s something there that’s going to help me if I need it.”26 Constant communication with care providers either in-person or through the device system increased feelings of relief and reassurance to use the device because patients felt a stronger connection with their care providers at far distances, communication supported reflection and understanding of the cardiac condition, patients felt that they had up-to-date information about their cardiac condition, and communication increased motivation for establishing healthy lifestyle behaviours.26–29 This was especially important for patients in rural and remote areas who found that communication through the device in the form of reminder messages to check monitoring data humanized the technology for them.26,29 Accuracy and reliability of the device was also viewed as central to the functionality of device. If the device was viewed as inaccurate or unreliable, then patients did not perceive it as a safety net.32
In terms of using their devices, multiple patients described pacemakers and mobile-health monitoring devices as easy-to-use.26,29,32 In one study, patients reported no barriers to setup and installation.26 Although not mentioned in all included studies, patients in two studies agreed that using the device is convenient to them because it reduces the number of appointments they need to attend, avoided unnecessary hospital visits, decreased the traveling time to clinics, and increased freedom and flexibility in monitoring their cardiac condition.26,32
Limitations
The body of evidence presented in this review has a number of limitations arising from the quality and scope of the included studies.
We identified nine studies relevant to patients’ perspectives and experiences with cardiac monitoring devices of moderate to high quality. The quantity of evidence is modest and further investigation is warranted to reveal a more nuanced understanding of patients’ perspectives and preferences with cardiac monitoring devices. Although multiple studies discussed patients’ experiences using devices to live and manage their cardiac condition, there was a dearth of data on the perspectives, preferences, or experiences of patients deciding between different cardiac monitoring devices, and, for example opting in or out of implantable cardiac monitors, or reasons for choosing to keep an implantable cardiac monitor inside the body after it is no longer needed. Some of these topics represent deeper concerns with cardiac monitoring use. However, the research included in this review has largely focused on clarifying patients’ experiences with cardiac monitoring devices more broadly. Therefore, the subtleties of how technological aspects of different devices influence patients’ adjustment to their cardiac condition remains an uninvestigated area. This observation is especially evident because the majority of included studies reported sparse details about the name, type and functional details of cardiac monitors that patients used. Alternatively, it may be the case that patients’ foremost concerns are being more involved in health decision-making, the ongoing monitoring of their cardiac condition, and acquiring more information about the cardiac monitoring process, all of which have been highlighted in this review. The lack of data on how different devices affect patients’ experiences may be due to patients’ overemphasis on understanding their cardiac condition and monitoring in general, which may be precursors to the more nuanced concerns that are unaddressed by the literature in this review. Perhaps when patients start to express higher satisfaction and uniformity in the information they are provided in a way that addresses their uncertainties, patients may begin to express other complex issues pertinent to living with cardiac monitors.
Three of the nine studies included participants with atrial fibrillation and the remaining six included participants with other chronic heart problems such as heart failure. The decision to include any cardiac patients’ experiences of using cardiac device to monitor a cardiac condition was made to expand the scope of this review and provide a clearer and broader understanding of the pertinent issues and experiences using cardiac monitors. Since the number of patients with any particular cardiac condition was low in number, these findings should be carefully applied to treatment and management of a specific cardiac condition; rather, these findings may be transferable to the entire population of cardiac patients that include stroke, atrial fibrillation, heart failure, and other chronic heart problems.
Conclusions and Implications for Decision or Policy Making
This rapid qualitative review found nine studies that discussed the experiences of patients with stroke, atrial fibrillation, and/or heart failure living with cardiac monitoring devices. Our analysis identified three categories and multiple themes that captured the expressions, concerns, and perspectives of patients adjusting to, living with, and making decisions around cardiac monitors. The first category, Information Acquisition, identified the informational needs of patients who reported a general lack of adequate information, uncertainty in the information they have, and the need for more communication and information from their care providers. It was found that for some patients, uncertainty and lack of information fueled many of the negative experiences with cardiac monitoring and the health care system. Patients desired more information on how to use cardiac monitoring devices, the different aspects of the cardiac monitoring process, the purpose of cardiac monitoring, and how to interpret their cardiac monitoring data accurately.
In the second category, Patient Engagement, patients emphasised the need for shared decision-making and increased involvement in critical decisions regarding their self-management and device usage. These experiences were related to the frequency and medium of communication with their care providers. Some patients found that lack of communication was a source of uncertainty in using the device accurately and managing their condition appropriately. For patients where communication was consistent, they felt engaged in health care decision-making and motivated and committed to self-management, which increased self-monitoring device use.
In the final category, Usability and Functionality of Cardiac Monitoring Devices, patients described their experiences adjusting to and living with new technologies in their lives. These experiences were modulated for many patients by their past experiences with technology and technological proficiency. Many patients reported a significant learning curve that was overcome with the support from family, friends, and the clinic. Some patients identified that an inconsistency between what they experienced as symptoms and what was measured by the device can incite uncertainty and confusion. In some cases where the care provider emphasised device data over patients’ experiential knowledge living with their cardiac condition, patients felt hopelessness, frustration, and despair, to the point that some patients ignored the advice and feedback from their care provider if it did not meet their expectations. Ongoing support and communication through the device that recognised the value of both experience and device data was perceived as important to the care experience and increased feelings of relief, reassurance, and confidence that enhanced patient engagement in their own clinical care.
In this review, patients expressed more general concerns related to lack of information, lack of engagement, and issues with the usability and functionality of cardiac monitoring devices. Due to the paucity of literature available, a more nuanced understanding of deeper issues in using cardiac monitoring devices is missing. The issues described in this paper represent the most salient concerns of patients that influence their adjustment to using a cardiac device, which tends to be the foremost concern of patients when they are just beginning to engage in self-monitoring. Once patients adjust to living with a cardiac device, they may begin to describe issues that are more sensitive and nuanced such as comparing the advantages and disadvantages of different cardiac monitors, making a decision to implant a cardiac monitor, and choosing to keep a monitor inside after it is determined that it can be removed. This review identified that there patients perceive multiple benefits to cardiac monitoring. However, the literature does not distinguish between whether patients perceive a particular device to provide more benefits than other devices or to have a preference for a particular device type. This is especially evident from the literature screening process whereby many studies were identified relevant to stroke, atrial fibrillation, and heart failure, but very few of these studies discussed patient experiences with cardiac monitors. This may indicate that although a plethora of qualitative research has been conducted in patients’ experiences with cardiac conditions, which includes experiences with other treatment options such as anti-coagulation, needs for proper coping, and informational sources and supports, there is less investigation on how these topics apply to the experience of cardiac monitor use.
A comparison of patient experiences with different monitors is an important objective for future research in this area. Although not clear in the literature, patient experiences may differ based on the type of monitor, medical condition, and reason for monitoring. Although many studies identified with a specific cardiac monitor, there was no discussion on patient experiences between devices, indicating that either patients may only have one option at their hospital or clinic, or patients are unaware of the various options that are available to them. Patients indicated a need for more information about alternative treatment options for their cardiac condition, which could translate to a need for more information of alternative cardiac monitoring devices if patients were aware that other options exist.
Future research needs to provide sufficient details about the monitors used by participants and how each participant used their monitors. This information would provide the context needed to develop a more integrative interpretation of how patients experience, live with, and make decisions between different monitors. Despite this theoretical limitation, this review provides a rich understanding of the general concerns raised by patients related to information, engagement, and usability and functionality of cardiac monitoring devices. This review informs a patient-centred perspective that attempts to reduce the emotional and social burden carried by patients managing their cardiac condition. Moreover, this review finds that the implementation of cardiac monitors should accompany basic supports that assist patients to adjust to, live with, and integrate cardiac monitors into their daily lives. These supports may include adequate, timely, consistent, and reliable communication with care providers and information provision about the various aspects of the cardiac monitoring process. Without these supports, patients may experience cardiac monitoring use negatively which in turn may reduce their motivation for and engagement in self-management.
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Appendix 1. Selection of Included Studies
Appendix 2. Characteristics of Included Publications
Table 1Characteristics of Included Publications
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| First Author, Publication Year, Country. | Study Designs and Analytic Approach | Study Objectives | Study Setting | Sample Size | Inclusion Criteria | Data Collection* |
|---|
| Andersen, 2017,28 Denmark | Multiple methods (quantitative and qualitative); the qualitative component used Phenomenology | To explore what patient experience is in cardiac remote monitoring and consider the implications of user experience | Tertiary care cardiac centre at a University hospital | 9 patients with chronic heart problems | NR | Semi-structured interviews |
| Chantler, 2016,29 United Kingdom | Multiple methods; the qualitative component employed Ethnography | To develop and evaluate a mobile-health monitoring system | Acute and ambulatory centres at hospitals | 58 patients with heart failure | Patients over the age of 18 with any severity of heart failure | Participant observation and semi-structured interviews |
| Hanley, 2015,32 United Kingdom | Mixed-methods research; the qualitative component used thematic analysis | To explore the experiences of stroke survivors | Stroke support group | 8 patients with stroke and 8 patients with TIA | Patients over the age of 18 with a history of stroke or TIA | Focus groups and semi-structured interviews |
| Health Quality Ontario,26 2018a | Multiple methods as a part of a health technology assessment; the qualitative component used Grounded Theory | To get the story behind participant experiences of implantable cardiac monitoring | Hospitals and organizations (specific organizations NR) | 13 patients with AF and 3 spouses of patients | People with lived experience with cardiac devices | Semi-structured interviews |
| Orchard, 2014,24 Australia | NR | To determine whether it is feasible for practice nurses and receptionists to use the iPhone electrocardiogram (iECG) device to systematically screen patients for AF prior to general practitioner consultation | Primary care clinics | 88 older patients | Patients over the age of 65 years attending a primary care clinic for a routine general practitioner consultation | Semi-structured interviews |
| Redman, 2017,30 Canada | Interpretive Description | To determine the content and dialogue of an online message board for atrial fibrillation with the purpose of elucidating information and patients’ support needs | Public website | 181 discussion forum threads | NR | Extraction and content analysis of messages |
| Riley, 2013,30 United Kingdom | Grounded Theory | To explore the extent to which telemonitoring in patients with heart failure empowers them to self-care | Hospitals | 15 patients with heart failure | Patients discharged from hospitals following a heart failure admission, were symptomatic and in the intervention arm of a study where they used telemonitoring daily for six months | Semi-structured interviews |
| Sabater-Hernandez, 2018,25 Australia | NR | To co-design a pharmacist-led community pharmacy service aimed at enhancing self-monitoring/screening of AF | NR | 5 patients with AF, 2 of whom have implanted pacemakers | Individuals over 65 years of age with hypertension and/or atrial fibrillation | Focus groups and semi-structured interviews |
| Siouta, 2016,31 Sweden | Content Analysis | To examine how patients describe their involvement decision-making regarding treatment in consultations with health care providers | Outpatient clinics | 22 patients with AF | NR | Semi-structured interviews |
- *
The data collection strategies of the qualitative portion of multiple- and mixed-methods studies are shown in this column only.
AF = Atrial Fibrillation; iECG = iPhone Electrocardiogram; TIA = transient ischemic stroke; NR = not reported
- a
Note – this is a draft report
Appendix 3. Characteristics of Study Participants
Table 2Characteristics of Participants of Included Studies
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| First Author, Publication Year | Sample Size* | Sex (% male) | Age range in years | Type of Cardiac Monitor |
|---|
| Andersen, 201728 | 9 patients | NR | NR | NR |
| Chantler, 201629 | 58 patients | 79 | 21-94 | Mobile-health home-monitoring system |
| Hanley, 201532 | 16 patients | 75 | NR | NR |
| Health Quality Ontario, 201826 | 13 patients and 3 spouses | NR | 50-79 | Pacemakers, cardioverter defibrillators, or cardiac resynchronization therapy defibrillators |
| Orchard, 201424 | 88 patients | 51 | 42-99 | AliveCor Heart Monitor for iPhone |
| Redman, 201730 | 181 discussion threads | NR | NR | NR |
| Riley, 201327 | 15 patients | 73 | 44-86 | A telemonitoring system was used but not identified |
| Sabater-Hernandez, 201825 | 5 patients | 88 | 70-88 | NR |
| Siouta 201631 | 22 patients | NR | 37-90 | NR |
- *
The sample size of the qualitative portion of multiple- and mixed-methods studies are shown in this column only.
Appendix 4. Critical Appraisal of Included Publications
Table 3Strengths and Limitations of Included Studies using Quality of Reporting Tool
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| Strengths | Limitations |
|---|
| Andersen, 201728 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation Identification of qualitative study design and how it was applied in the study context Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation Multiple data collection strategies have been employed, which enhances the rigour of this study
|
The participant recruitment process is reported but unclear Details on how the different data collection strategies were applied are sparse The aggregated summary characteristics of participants (age, gender, male proportion) are not reported
|
| Chantler, 201629 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation Identification of qualitative study design and how it was applied in the study context Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation Multiple data collection strategies have been employed, which enhances the rigour of this study Clear description of how and from where participants were recruited
|
Details on how the different data collection strategies were applied are sparse It is unclear how data from participant observation substantiated the data from semi-structured interviews and vice versa The data analytic approach is identified but the description is lacking specific processes, devices, and approaches to guide the data analysis
|
| Hanley, 201532 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation
|
It is unclear which qualitative study design was used to guide the data collection and analysis process Details on how the knowledge generated from this study informed the full mixed-methods study are sparse The participant recruitment process is reported but unclear The data collection strategies are identified but the specific procedures and protocols that guide data collection lack sufficient detail The data analytic approach is identified but the description is lacking specific processes, devices, and approaches to guide the data analysis
|
| Health Quality Ontario, 201826 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation Identification of qualitative study design and how it was applied in the study context Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation Clear description of how and from where participants were recruited Data collection strategies were identified and justified adequately, and the choices were congruent with the objectives and qualitative study design
|
This study aimed to engage patients in an HTA about cardiac monitoring devices, and was not a qualitative research study in and of itself Details on how the knowledge generated from this study informed the full mixed-methods study are sparse
|
| Orchard, 201424 |
|---|
|
|
The research objectives and/or question are unclear and require elaboration It is unclear which qualitative study design was used to guide the data collection and analysis process The participant recruitment process is not reported The data collection strategies are identified but the specific procedures and protocols that guide data collection lack sufficient detail The data analytic approach is identified but the description is lacking specific processes, devices, and approaches to guide the data analysis
|
| Redman, 201730 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation Identification of qualitative study design and how it was applied in the study context Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation Data collection and analysis strategies were identified and justified adequately, and the choices were congruent with the objectives and qualitative study design
|
|
| Riley, 201327 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation The qualitative study design was identified Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation Data collection and analysis strategies were identified and justified adequately, and the choices were congruent with the objectives and qualitative study design
|
|
| Sabater-Hernandez, 201825 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation Data collection and analysis strategies were identified and justified adequately, and the choices were congruent with the objectives and qualitative study design
|
|
| Siouta, 201631 |
|---|
Clear statement of research objectives and/or question Clear description of the phenomenon under investigation The qualitative study design was identified Succinct description of the eligibility criteria The eligibility criteria are congruent with the objectives of study and phenomenon under investigation Data collection and analysis strategies were identified and justified adequately, and the choices were congruent with the objectives and qualitative study design
|
|
About the Series
CADTH Rapid Response Report: Summary with Critical Appraisal
Funding: CADTH receives funding from Canada’s federal, provincial, and territorial governments, with the exception of Quebec.
Suggested citation:
Patients’ experiences with cardiac monitors for stroke: A rapid qualitative review. Ottawa: CADTH; 2018 Sep. (CADTH rapid response report: summary with critical appraisal).
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