Cardiac surgery patients’ e-health literacy and their use of a digital portal

Abstract

Objective:

To determine how cardiac patients use the Activeheart.dk digital toolbox

Methods:

Mixed-methods study. A total of n = 33 cardiac surgical patients were enrolled in a study, which encouraged use of the Activeheart portal for 4 weeks after discharge. Patients were surveyed with respect to their demographic characteristics, e-health literacy skills, use of the Internet and use of the portal. In addition to the questionnaire survey, qualitative interviews were conducted with six randomly selected patients in order to study users’ experiences with and use of the portal.

Results:

Quantitative results showed no relation between cardiac patients’ prior e-health literacy skills and their use of the portal. Approximately 25 out of 31 patients stated that they had the skills to seek, locate and use health information on the Internet. Among the 17 patients who completed the first and second questionnaires, nine rarely used Activeheart.dk, four used it several times per month, and four several times per week. In 10 out of 16 replies, Activeheart.dk was rated as relevant or very relevant. Themes from the qualitative interviews revealed that the effects of medication and emotional, physical and cognitive changes had a higher impact on the use of the portal than prior e-health literacy skills.

Conclusion:

While participants’ e-health literacy skills ratings were high, and while participants stated that the content of the portal was relevant, their actual use of the portal remained limited. No relationship was found between participants’ e-health literacy skills and their use of the portal. Factors such as patient motivation, resources and timing of the intervention’s introduction seemed to be of greater importance.

Keywords

Cardiac surgery Denmark e-health literacy health information health literacy

Introduction

Ischemic heart disease is caused largely by an unhealthy lifestyle. It is a major single cause for deaths worldwide and is associated with decreased quality of life and functioning in everyday life (European Society of Cardiology, 2012; Mozaffarian et al., 2014; World Health Organization (WHO), 2016). With an increased number of patients with chronic diseases and in order to meet their needs for health information, different types of health services have been developed (Brennan et al., 2009). The use of information and communication technologies (ICT) in tele-rehabilitation, for example, is rapidly growing in healthcare, the aim being to respond positively to demographic changes, including an aging population with a greater prevalence of chronic diseases (Langberg et al., 2014; Russell, 2007). People usually suffer from chronic diseases for many years, and patients are now expected to provide a great deal of their healthcare themselves. This increased focus on patient participation requires patients not only to have health literacy skills but also e-health literacy skills in order to function adequately and to manage the enormous flow of information provided by the healthcare system and by the resources available on the Internet (Bodie and Dutta, 2008). Increasing the health literacy skills of patients and citizens has thus become a key public health goal for the 21st century and a significant challenge to health care globally (Nutbeam, 2000).

Informed by Nutbeam’s (1998) approach, WHO defines health literacy as the ‘cognitive and social skills that determine the ability and motivation to gain access to, understand and use information’ (p. 357). The US Institute of Medicine’s report on health literacy has highlighted the need to carefully consider the contexts in which health information is obtained and used (Nielsen-Bohlman and Panzer Kinding, 2004). These contexts include electronic resources such as the worldwide web and other technologies that play an increasing role in health. Being health literate in an electronic world requires a different, or at least an expanded, set of skills to engage in health care (Norman and Skinner, 2006a). As a result, the concept of e-health literacy has been developed and has been defined as ‘the ability to seek, find, understand and appraise health information from electronic sources, and apply the knowledge gained to addressing or solving a health problem’ (Norman and Skinner, 2006b: 1).

While healthcare professionals may provide health information and targeted patient education materials, the patient may find these materials difficult to read or understand (Friis et al., 2016; Hansberry et al., 2014). A WHO supported study found that approximately half of all patients suffering from chronic diseases are assumed to have difficulties navigating web-based health information. Their acceptance of technological applications depends on their general attitude toward the usefulness of the Internet for personal health, and this acceptance decreases with lower educational level, variations in context and the severity of the chronic disease (Duplaga, 2015; Lee et al., 2015). Another study has shown that those thoracic surgical patients who seek out knowledge about their disease online and use hospital websites tend to be younger and have higher education (Lussiez et al., 2015). Among the less frequent users of the Internet are cardiac patients (Lim et al., 2010).

Patients often receive a large amount of oral and printed information immediately before and after surgery, including instructions and exercises communicated to them by healthcare professionals. Having this information available on the Internet in a single portal, and being able to access it after they have fully recovered, may help patients remember and utilize all the information provided regarding their disease and may help to enhance the e-health literacy of the patients. Against this background, the aim of this study was to explore cardiac surgical patients’ use of a digital toolbox, called Activeheart.dk and their experiences with the use of the portal. The portal has been developed through user-driven innovation as part of the larger teledi@log project (Dinesen, 2016).

Activeheart.dk

Activeheart.dk is a web-based portal developed with the active involvement of cardiac and cardiac surgery patients using a participatory design process (Boedker et al., 2004). In this study, the portal provided cardiac surgical patients with information about post-operative precautions and exercises, lifestyle changes, psychological issues and coping strategies. The aim of the portal was to bring together all relevant information in a single source that could present information to patients at different learning levels and in various forms, including audio, video, text and speech (Joergensen et al., 2013). All information, links and references were evidence-based and scientifically reliable. Activeheart.dk was developed by the Department of Cardiothoracic Surgery at Aalborg University Hospital in Denmark. A large display screen was installed outside the patients’ living room in the department so as to make it available for those wishing to access the portal. Patients could access the Activeheart.dk portal day and night. A printed user manual containing contact information was available, as well as a help function (Figure 1).

Figure 1.

Screen dumps from Activeheart.dk. Left: Page with the seven main topics (Information from the physiotherapist, exercise, heart rehabilitation, exercise programs, training videos for recently operated patients, test yourself, exercise intensity). Right: Video of breathing exercises.

Methods

Study design

The study employed mixed methods and adopted an explanatory design procedure (Creswell and Plano Clark, 2011). First, quantitative data were collected and based upon these data, a qualitative study was conducted of patients’ experiences of using Activeheart.dk as a portal during their rehabilitation.

Theoretical framework

The study was inspired by theories of health literacy and e-health literacy skills as reviewed earlier. These theories provided a framework for understanding, describing and analysing patients’ capacity to manage their health conditions using new technologies and for assessing their e-health literacy skills prior to, during and after the use of new technologies.

Health literacy may be defined as the ability of individuals to access, understand and act upon health information in ways that promote their health condition (Nutbeam, 1998). Health literacy may be subdivided into three levels associated with varying levels of cognitive and literacy skills:

Level 1: Functional health literacy (sufficient basic skills in reading and writing);

Level 2: Interactive health literacy (ability to extract information and derive meaning from it);

Level 3: Critical health literacy (ability to critically analyse and use information). (Nutbeam, 2000)

The concept of e-health literacy was originally presented in the form of a ‘Lily-model’ by Norman and Skinner (2006b) The model describes and illustrates six types of literacies considered necessary for possessing full e-health literacy: health, computer, science, traditional, information and media literacy. Norman and Skinner later developed the eHealth Literacy Scale (eHEALS), an 8-item scale that measures perceived skills in finding, evaluating and applying electronic health information to health problems (Norman and Skinner, 2006a). Norgaard et al. (2015) subsequently extended Norman and Skinner’s work by developing a new framework for e-health literacy based on the interaction between individuals and systems in which he shows that e-health is strongly context-dependent.

Participants

Inclusion criteria

The patients included in this study had received an on- or off-pump coronary artery bypass graft and/or heart valve surgery, through a full or partial sternotomy at Aalborg University Hospital. They were required to possess Internet access and basic IT skills and have a relative who could offer IT support. Since the website was available only in Danish, patients were required to read, understand and speak Danish.

Exclusion criteria

Patients who had undergone urgent or emergency cardiac surgery were excluded. A second exclusion criterion was patients who had been diagnosed with cognitive impairments due to dementia or brain injury. Patients who were too affected by the operation to participate due to health or ethical reasons were also excluded; the investigators’ exclusion decision was based on an assessment of the patient’s overall state of health, for example, energy level, sleep and pain discomfort, as described by the patient’s physiotherapist.

At enrollment, the following data were collected using a questionnaire survey:

Demographic characteristics: age, gender, marital status and educational level;

Health literacy skills: learning skills, use of technology;

Use of the Internet: ability to seek out online information regarding own health.

After 4 weeks using the Activeheart.dk portal, the following additional data were collected:

Questionnaire survey (n = 31) on e-health literacy skills and use of Activeheart.dk Key themes explored were the following: experience and use of Activeheart.dk and the textual content, learning skills regarding illness, use of technology, online information-seeking.

Qualitative interviews with respondents (n = 6) on the use of the Activeheart.dk Themes covered were as follows: general state of health after discharge, the need for information and the use of Activeheart.dk

Survey of health literacy and e-health literacy skills

Findings from a qualitative evaluation of patients’ use of Activeheart (Joergensen et al., 2013) were used to design the questionnaires used in this study. Items in the eHEALS scale formed the basis of the assessment of e-health literacy skills (Norman and Skinner, 2006a). Central themes for the questionnaire before and after patients’ use of Activeheart portal were identified under the following categories: patient characteristics, use of technologies, experiences seeking out health information, and use of the Activeheart portal.

The questionnaires were tested in an iterative process in three steps. A sample of five cardiac patients tested the questions at each step-in order to ensure consistency and usability. In each step, we observed patients’ non-verbal reactions when filling in the questionnaire. We also interviewed them afterwards regarding questions or words that were unclear for them. Based on the feedback, we reformulated the questions or replaced terms or phrases that were unclear or ambiguous. The questionnaires were developed in Denmark, as there were no Danish language questionnaires at the time of the study.

Survey data were collected between 15 August and 6 October 2016. Patients were informed about the study while receiving pre-operative instructions by the physiotherapist. Eligible patients received additional oral information about the study 3–4 days after their operation, and if they agreed to participate, they signed an informed consent form.

Participants were then introduced to the Activeheart.dk web portal and received a printed user’s manual. The study used two questionnaires. The first questionnaire was completed during the hospital stay, and the second questionnaire was sent to them 4 weeks after discharge (a prepaid envelope for returning the questionnaire was enclosed). Participants also received a telephone call as a reminder to complete questionnaire no. 2.

Analysis

Quantitative data

Quantitative data were analysed using the Statistical Package for Social Sciences (SPSS) version 24. To explore potential differences between age, educational level and the use of Activeheart.dk, a Kruskall–Wallis test was conducted. The correlation between e-health literacy skills and use of Activeheart.dk was assessed using Spearman’s Rho test. The significance level was set at p < .05.

Qualitative interviews

Interviews were conducted between 26 October and 8 November 2016. Interview design and analysis was inspired by the framework offered by Kvale and Brinkmann (2009). Six respondents were consecutively selected from those enrolled in the study until data saturation was obtained. Interviews were conducted 3–4 weeks after discharge and lasted between 25 and 35 minutes each. They were recorded and transcribed.

Coding of the digital files was inspired by Kvale’s meaning analysis (Kvale and Brinkmann, 2009) using NVivo 11.0. Data were analyzed through two cycles of coding. During the first cycle, participants’ exact statements were divided into five themes. During the second cycle, the data were coded into four new emerging themes. The first and second authors carried out all data analysis and interpretation. To ensure intersubjective understanding, discussion on how to identify central themes resulted in a guideline for the audio coding of the interviews. The first and second authors (D.K. and A.F.) coded three interviews each and then reviewed each other’s coding. In cases of disagreement, themes were reconsidered until the researchers agreed on the coding and themes in collaboration with last author (A.F.).

Ethical issues

In line with the regulations of the Danish Ethical Committee, the study did not have to be reported, as it was not an intervention study. The study was conducted according to the principles of the Helsinki Declaration. All participants signed an informed consent form. Data analysis was carried out in accordance with the Act on the Processing of Personal Data of The Danish Data Protection Agency (Number 2008-58-0028).

Results

During the data collection period, 65 patients were approached, of whom 13 did not meet the inclusion criteria, and 15 did not agree to participate due to lack of energy or interest. Four were excluded due to other reasons. Thus, 33 were enrolled in the study. Due to lack of mental resources, health-related complications or other reasons, 14 participants dropped out of the study after the first questionnaire, leaving 17 patients to complete the second questionnaire. Of these, 17 patients, six were selected for qualitative interviews.

Patients included

At baseline, participants’ mean age was 64.4 years (standard deviation [SD] = 10.30 years). A total of 77% were men (n = 31), 48% were vocationally educated, 13% had under 2 years of higher education, 23% had bachelor’s degrees and 6% had master’s degrees (Table 1).

Table 1.

Baseline data.

Patient characteristics	N (%)
Age (n = 31)
Mean age, years ± SD	64.4 ± 10.3
Gender (n = 31)
Men	24 (77.4)
Civil status (n = 31)
Married or living with partner	24 (77.4)
Single	4 (12.9)
Widowed	3 (9.7)
Education completed (n = 31)
Elementary school up to 7th grade	7 (22.6)
Elementary school up to 9th or 10th grade	15 (48.4)
High school	9 (29.0)
Highest education level (n = 28)
Vocational education (skilled worker)	5 (53.6)
Short education, 2–3 years	4 (14.3)
Bachelor’s degree, 3–5 years	7 (25.0)
Master’s degree, 5–8 years	2 (7.1)
Cause of present hospitalization (n = 31)
Coronary artery bypass grafting	17 (54.8)
Heart valve replacement	10 (32.3)
Previous hospitalization due to heart disease (n = 31)
Use of technology at baseline	N (%)
Use of the Internet (n = 29)
Rarely	2 (6.9)
Several times per month	0 (0)
Several times per week	2 (6.9)
Every day	12 (41.4)
Several times per day	13 (44.8)
Use of the Internet for
Information seeking	26 (89.7)
Online newspapers	18 (62.0)
Online radio/television	14 (48.3)
E-mail	23 (79.3)
Online discussion	2 (6.9)
Gaming	5 (17.2)
Home banking	22 (75.9)
Use of Internet for information regarding health	18 (58.1)
Use of Internet for information regarding disease	14 (45.2)
Importance of Internet information regarding health and disease (n = 30)
Not important at all	1 (3.3)
Not important	5(16.7)
Neutral	3 (10)
Important	14 (46.7)
Very important	7 (23.3)

Patients excluded

As indicated above, a total of 32 patients were either excluded from the study or chose not to participate. Their mean age was 68.8 (SD = 9.7). Nine patients (mean age 73 years) were excluded because they had no Internet access or no IT skills. Fifteen did not want to participate because of lack of interest or energy (mean age 68.9). Three had severe complications or died (mean age 68.3). Two were excluded because of language barriers and three for other reasons. The mean age of all patients who were excluded because of language, death, complications or other reasons was 68.8 (SD = 9.8).

Use of technology

In the baseline survey, 93% of the sample (n = 29) reported that they used the Internet ‘several times per week or more’, primarily for information-seeking, e-mail and home banking, and second for reading newspapers or accessing radio/television programs. In addition, 70% (n = 30) found it ‘important’ or ‘very important’ to have Internet access to information about health and disease, and approximately 50% (n = 29) used the Internet for information regarding health or disease (Table 1).

E-health and use of Activeheart.dk

Activeheart.dk was never or rarely used by 53% (n = 9), several times per month by 23.5% (n = 4) and several times per week by 23.5% (n = 17). In all, 62.5% (n = 16) rated Activeheart.dk as ‘relevant’ or ‘very relevant’ to their health needs (Table 2).

Table 2.

Use of Activeheart.dk and ratings about e-health skills.

Characteristics	N (%)
Use of Activeheart.dk (n = 17)
Never	2 (11.8)
Very rarely	7 (41.1)
Several times per month	4 (23.5)
Several times per week	4 (23.5)
Every day	0 (0)
Several times per day	0 (0)
Content and usability of Activeheart.dk
How would you assess the content of Activeheart.dk? (n = 16)
Very relevant	2 (12.5)
Relevant	8 (50)
Neutral	2 (12.5)
Partially relevant	3 (18.8)
Irrelevant	1 (6.2)
E-health:
I know how to use the Internet to get answers to health-related questions (n = 30)
Strongly agree	9 (30.0)
Agree	16 (53.3)
Neutral	3 (10.0)
Disagree	1 (3.3)
Strongly disagree	1 (3.3)
I have the skills to find useful information on the Internet about health (n = 31)
Strongly agree	7 (22.6)
Agree	18 (58.1)
Neutral	2 (6.5)
Disagree	3 (9.7)
Strongly disagree	1 (3.2)
I know how to use the health-related information on the Internet (n = 31)
Strongly agree	8 (25.8)
Agree	15 (48.4)
Neutral	5 (16.1)
Disagree	2 (6.5)
Strongly disagree	1 (3.2)
I have used the Internet to find information about my cardiac disease (n = 31)
Strongly agree	10 (32.3)
Agree	8 (25.8)
Neutral	4 (12.9)
Disagree	6 (19.4)
Strongly disagree	3 (9.7)
I have the skills to distinguish between good and bad quality information on the Internet regarding health/disease (n = 31)
Strongly agree	7 (22.6)
Agree	14 (45.2)
Neutral	5 (16.1)
Disagree	3 (9.7)
Strongly disagree	2 (6.5)

At baseline, 83% (n = 30) indicated that they knew how to use the Internet to obtain answers to health-related questions, and 77% (n = 31) agreed or strongly agreed that they had the skills to distinguish between good and bad quality information (Table 2).

A Kruskall–Wallis test showed no significant difference between patients’ age (p = .871), educational level (p = .269) and their use of Activeheart.dk.

To assess the relationship between e-health skills and the use of Activeheart.dk, a Spearman’s Rho was calculated. There Spearman’s Rho showed no correlation between these variables (Table 3).

Table 3.

Correlation (Spearman’s rho) between e-health skills and use of Activeheart.dk.

	Spearman’s rho	N	p-value
I know how to use the Internet to get answers to health-related questions	−.346	17	.174
I know how to find useful information on the Internet about health	−.349	17	.170
I know how to use the health-related information on the Internet	−.456	17	.066
I have the skills to distinguish between good and bad quality on the Internet regarding health/disease	−.058	17	.824

Qualitative data

Interviews were carried out with two women and four men (mean age 65.16 years; SD = 4.45). Three of the six interviewees had vocational educations, two had bachelor’s degrees and one had more advanced university education. Two of the interviews were held face-to-face, and four were telephone interviews.

After the second round of coding, five themes emerged: (1) health literacy skills, (2) e-health literacy skills, (3) motivation, (4) resources and (5) timing. The themes were divided into sub-themes, and relevant citations were coded (Table 4). The sub-themes revealed that factors such as technological skills, motivation and temporary memory loss, a sense of obligation or the level of physical or psychological resources, were factors associated with increased patients’ use of Activeheart.dk.

Table 4.

Themes and subthemes after second coding.

Theme	Sub-themes	Selected citations
Health literacy skills	Management of own health	‘Of course, I followed the instructions from the hospital’ (ID 11)
E-health literacy skills	Able to use the Technology	‘I made an Internet search regarding pain, … and I wondered what pain is … I was directed to Vejle Hospital’ (ID33).
E-health literacy skills		‘The information on Activeheart.dk was very superficial’ (ID 33).
Motivation	Not motivated for use	‘My wife … seeks out health information and reads medical journals. If she had noticed anything, she would have said it to me. So no, I do not search for health information’ (ID 18).
	Has used Activeheart as an obligation	‘I logged on once and thought “that looks fine” and logged out. Then you called me, and I thought, “Let me have another look at it”‘ (ID 29).
	Has used Activeheart voluntarily	‘When my condition improved, I started using Activeheart.dk a lot’ (ID 33).
Resources	Limited physical resources	‘And then you came to inform me, and I was affected by medication and I was very tired at that time’ (ID18);
Resources	Limited psychological resources	‘At that time, we were filling out the [questionnaire]. I was feeling stressed out because there were so many other things going on’ (ID 11).
Timing	Time for introduction was not well chosen	‘A project like this can barely get priority because you have so much else to think about’ (ID 29).
Timing	Forgot to use Activeheart.dk	‘Send a text message as a reminder, that would be fine’ (ID 11).

Qualitative data also revealed that one main reason given by patients for not using Activeheart.dk was that they felt they had other priorities after discharge, along with factors such as lack of motivation, a focus on meeting more basic needs and decreased physiological and physical well-being.

Discussion

No relationship between health and e-health literacy skills and the use of Activeheart.dk

In this study, most participants ended up using Activeheart.dk only rarely or not at all. Use/non-use was not of Activeheart.dk was not related to patients’ age or educational level. Even though the majority of participants stated that they possessed the skills to seek, find and use health information on the Internet, only 18 out of 31 used Activeheart.dk to seek out information about their specific cardiac illness. Interviews confirmed that the participants in the study felt confident about their ability to search for health information in Activeheart.dk and on the Internet in general. Nevertheless, the majority chose not to use it. Studies have shown that a high level of e-health literacy skills tends to encourage cardiac patients’ information-seeking on the Internet (Lussiez et al., 2015; Murero et al., 2001). We expected this to be true with the Activeheart portal. Given the patients relatively good level of health and e-health literacy, however, their use of the website proved to be less frequent than expected.

Another unexpected finding was the lack of relationship between participants’ age, educational level and their self-assessed e-health literacy skills. This finding differs from other studies, where social gradients of age, income and educational level have been shown to be related to the level of health and e-health literacy (Soerensen et al., 2015; Xesfingi and Vozikis, 2016). This finding may be due to the fact that the patients included in this study tended to be younger than the total group of eligible patients. Nevertheless, being an average of 4.4 years older than the excluded patients or the patients who chose not to participate is probably too small a difference to explain these unexpected results. Qualitative findings, however, revealed that factors such as time priorities and motivation were more important factors associated with the use/non-use of Activeheart.dk. In particular, those with limited physical and psychological resources tended to be less frequent users of the portal. Because of this association, a motivational theory may be useful in understanding the factors behind frequency of using Activeheart.dk.

Motivation and resources

In studies exploring the impact of motivational factors on cardiac rehabilitation, factors such as self-determined regulation, competence satisfaction and fulfillment of psychological needs have been shown to help improve well-being and to support physical activity and lifestyle changes (Rahman et al., 2015; Thorup et al., 2016). Self-Determination Theory (SDT) draws a distinction between intrinsic motivation, that is, doing something merely because of the joy or genuine feeling of interest and extrinsic motivation, which refers to actions performed because of external demands, incentives or obligations to oneself or others. Amotivation signifies a total lack of motivation (Ryan and Deci, 2000).

Findings in this study revealed that all three motivation types were present. An example of amotivation was provided by a participant who said, ‘My wife… seeks out health information and reads medical journals. If she had noticed anything, she would have told me. So, no, I do not search for health information’ (ID 18).

The behaviour of some participants was driven by extrinsic motivation, as shown by the two participants who simply felt an obligation to participate in the study:

‘I agreed to participate… and if I can help out, it’s fine’. (ID29)

‘I did not have the need for it [Activeheart.dk], but I have used it. A lot of it is a repetition of things I’ve heard before’. (ID 19)

Those who had used Activeheart.dk were motivated to do so either by curiosity or by the need for information due to diminished well-being or specific issues related to their own state of health.

Timing

Participants indicated that it was inappropriate to be brought into the study on the very first day after surgery. As one patient put it, ‘And then you came to inform me, and I was affected by the medication, and I was very tired at the time’ (ID 18). Past studies have also found that fatigue may hamper early recovery and that sleep and recovery are essential following surgery (Barnason et al., 2008; Hedges and Redeker, 2008) Another participant stated, ‘Disturbances sometimes occurred during nights, when four people with different rhythms were in the same room’ (ID 19). This may indicate that contextual factors, such as several patients being in the same hospital room, may also influence post-operative recovery. With the above-mentioned cognitive impairments and the participants’ impaired physical and psychological condition during the immediate post-operative period, it is clear that the introductory orientation to the study could be more profitably integrated into the pre-operational information package.

Limitations and strengths

This study is not without its limitations. These included data collection being limited to a 3-month period and small sample size (n = 33). The 50% dropout rate could perhaps have been decreased by recruiting patients in person when preparing them for surgery. A more robust set of study conclusions would require attention to these issues and a larger sample size.

Conclusion

In this study, no relationship was found between participants’ e-health literacy skills and their use of the portal. While the patients’ e-health literacy skills were high, and while they stated that the content of the portal was relevant, their actual use of the portal was more limited than was anticipated. Factors such as motivation, patients’ priorities about their basic needs post-surgery and post-surgery cognitive impairments had a greater effect on patients’ (non-)use of the portal than their prior e-health literacy skills.

Footnotes

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

Delvin Khan

Charlotte B Thorup

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