Master’s Thesis
Research Master’s in Communication Science
Graduate School of Communication, University of Amsterdam
The role of communication in cardiovascular disease risk
prevention: a qualitative interview study of patients’
experiences
Student Sandra Nanette Kloet Julião – 6017622
Supervisor Dr. Annemiek J. Linn
ABSTRACT
Background: Cardiovascular disease (CVD) is the leading cause of death worldwide. This
makes the prevention of CVD risk very important. Research shows that patients’ communication with their general practitioner (GP) about CVD can help raise patients’ awareness of CVD risk, knowledge and understanding of CVD risk factors, and enable patients to accurately perceive their CVD risk. Consequently, this can enhance the patients’ likelihood to adopt lifestyle behaviours that promote the prevention of CVD. However, little is known about the role of the communication with the GP from a patients’ perspective.
Objectives: The primary aim of this study is to gain insights into patients’ experiences of their
CVD risk awareness, their knowledge and understanding of CVD risk factors, their perceived CVD risk, and the role that the communication with their GP plays in this.
Methods: The qualitative software program Atlas.ti was used to perform a thematic analysis
(TA) on 68 semi-structured patient interviews. TA is a method for identifying, analysing and reporting patterns (themes) within data. The six phases of TA are familiarisation with the data, generating codes, searching for themes, reviewing themes, naming and defining themes, and producing a report. This study used the six phases of TA to analyse patients’ experiences regarding CVD risk.
Results: Family history of CVD, personal life experiences, patients’ feelings about their
health, and the communication with their GP play a role in the patients’ CVD risk awareness, knowledge and understanding of CVD risk factors, and their perceived CVD risk.
Furthermore, check-up appointments, test results, and medication play a role in patients’ perceived CVD risk. Finally, these patient experiences play a role in the patients’ likelihood to change lifestyle behaviours.
Conclusions: The communication with the GP plays a role in patients’ CVD risk awareness,
knowledge and understanding of CVD risk factors, and perceived CVD risk. However, patients’ experiences reveal that the role of the communication with their GP is minimal. Therefore, GP-patient communication about CVD risk and CVD risk factors should be improved so that it can play a more important role in the prevention of CVD risk.
INTRODUCTION
Cardiovascular disease (CVD) is the leading cause of death worldwide (Mensah & Brown, 2007) with one in four people dying from this disease (Kayaniyil et al., 2009). First episodes of CVD are often fatal (Eaker et al., 1993; Graham et al., 2007; Pearson et al., 2002; Rose, 1981). If the first episode is not fatal it causes much irreversible damage in the patient. This reduces the efficacy of interventions after a first episode. The emphasis should therefore be placed on the prevention of CVD (Terris, 1999). Prevention of CVD can be accomplished by avoiding or treating risk factors such as high blood pressure and cholesterol, diabetes, and unhealthy lifestyle behaviours (Cui et al., 2001; D’Agostino et al., 2008; Deales et al., 2014; Murray et al., 2003; Weisfeldt & Zieman, 2007). Lifestyle behaviours such as regular physical exercise and a healthy diet can greatly enhance the prevention of CVD (Graham et al., 2007; Hoekstra, Beulens, & Van der Schouw, 2009; Kohl, 2001; Pearson et al., 2002; Rivellese, 2005).
Even though information about CVD and CVD risk factors exists (Anderson, Odell, Wilson, & Kannel, 1991; Mackay & Mensah, 2004; Mensah & Brown, 2007) it has failed to prevent CVD from being the leading cause of death worldwide. Adequate communication about CVD risk with the general public and CVD patients in particular, is crucial because it enhances the distribution of knowledge (Pearson et al., 2002). For an effective and adequate distribution of information about CVD the role of general practitioners (GPs) is fundamental in the
communication with patients (Pearson et al., 2002; Van der Weijden, Bos, & Koelewijn-Van Loon, 2008). Through GP-patient communication patients’ awareness of CVD risk can be raised as well as their knowledge and understanding of CVD risk factors (Kothari et al., 1997). Patients’ CVD risk awareness, knowledge, and understanding can enable them to accurately perceive their risk and aid in the prevention of CVD (Cameron, 2013; Van Steenkiste et al., 2004; Weinstein, 1999).
Research about CVD risk communication often focusses on communication strategies for GPs (Waldron, Van der Weijden, Ludt, Gallacher, & Elwyn, 2011), such as the use of different formats (e.g. loss versus gain frames, verbal versus numerical qualifiers, relative versus absolute risk), to explain CVD risk to their patients (Naik, Ahmed, & Edwards, 2012; Zipkin et al., 2014). A lot of this research does not focus on the patients’ experiences and preferences of the communication (Bensing, Rimondini, & Visser, 2013). In one study, healthcare
knowledge (Liewer, Mains, Lykens, & René, 2007). However, this research leads to
conclusions about patients’ experiences without consulting the patients themselves. Insights into the patients’ experiences could provide useful information that can lead to implications about how to improve GP-patient communication about CVD risk during consultations. Therefore, this study focusses on the patients’ experiences. The primary aim of this study is:
To gain insights into patients’ experiences regarding their CVD risk awareness, their knowledge and understanding of CVD risk factors, their perceived CVD risk, and the role that the communication with their GP plays.
A qualitative analysis of patient interviews about the communication with their GP regarding CVD risk and CVD risk factors provided insights from a patient’s perspective.
THEORETICAL FRAMEWORK
Importance of GP-patient communication
In the past two decades an increased interest is seen in research that explores the communication between GP and patient during consultations (Ong, De Haes, Hoos, &
Lammes, 1995). The amount of consultations an average GP has ranges between 120.000 and 160.000 over a period of 40 years of practice (Beck, Daughtridge, & Sloane, 2002). Risk communication is particularly important in the management of chronic diseases, such as coronary artery disease, congestive heart failure, hypertension, and diabetes, because patients may require frequent encounters with healthcare providers and face difficult treatment
decisions (Beck et al., 2002; Schenker, Stewart, Na, & Whooley, 2009). Research suggests that adequate communication during consultations contributes to several aspects of the healthcare process such as the exchange of information, enhanced interpersonal relationships, and improved informed decision making, which consequently influence patients’ health outcomes (Beck et al., 2002; Henry, Holmboe, & Frankel, 2013; Schoenthaler, Kalet,
Nicholson, & Lipkin, 2014; Zolnierek & Dimatteo, 2009) such as patients’ knowledge, recall, understanding, satisfaction with the healthcare, and adherence to the GP’s advice (Alm-Roijer, Stagmo, Uden, & Erhardt, 2004; Buller et al., 1987; Matusitz & Spear, 2014; Mazzi et al., 2013; Schoenthaler et al., 2014; Zolnierek & Dimatteo, 2009). Conversely, inadequate communication can impede patients’ health outcomes (Ong et al., 1995). Therefore, it is important that the communication in the healthcare sector is optimal (Matusitz & Spear, 2014). However, adequate communication is often lacking.
Much of the research about GP-patient communication, measures the effectiveness of the GPs’ use of different communication formats (e.g. verbal versus numerical qualifiers, relative versus absolute risk) to explain health risk to their patients (Naik, Ahmed, & Edwards, 2012; Zipkin et al., 2014). Even though this research allows insights into the patients’ experiences of their preferred formats (Deales et al., 2014; Goldman et al., 2006; Neuner-Jehle, Senn,
Wegwarth, Rosemann, & Steurer, 2011; Schapira, Nattinger, & McHorney, 2001; Soureti, Hurling, Murray, Van Mechelen, & Cobain, 2010; Van Steenkiste et al., 2004), it does not allow insights into patients’ experiences about other aspects of the communication with their GP that go beyond these formats. Insights into different aspects of the communication are important to understand what patients want and expect from the communication with their GP (Bensing et al., 2013). The current study focusses on the patients’ experiences of the
communication with their GP, without limiting the discussion of the patients’ experiences to predefined formats.
Patients’ awareness of CVD risk
Effective CVD risk communication can result in a patient’s raised awareness of CVD risk (Waldron et al., 2011). Despite a rise in awareness of CVD and its fatal consequences over the last years (Mosca, Ferris, Fabunmi, & Robertson, 2004; Mosca, Mochari-Greenberger, Dolor, Newby, & Robb, 2010) patients still reported that they are insufficiently aware of CVD risk (Croquelois & Bogousslavsky, 2006; Kothari et al., 1997). Low patient awareness can impede the prevention of CVD risk (Cameron, 2013). Therefore, raising patients’ awareness can be seen as the first important step in the prevention of CVD risk (Ferris, Robertson, Fabunmi, & Mosca, 2005; Liewer et al., 2007).
Researchers often use questionnaires and structured interviews to assess patients’ CVD risk awareness (Croquelois & Bogousslavsky, 2006; Ferris et al., 2005; Kayaniyil et al., 2009; Kothari et al., 1997; Mosca, Ferris, Fabunmi, et al., 2004; Mosca, Mochari-Greenberger, Dolor, Newby, & Robb, 2010). However, these studies do not consider the role that the patients’ communication with their GP plays in their CVD risk awareness. The current study provides insights into the patients’ experiences of their CVD risk awareness and the role that the communication with their GP plays.
Patients’ knowledge of CVD risk factors
Patients reported a lack of knowledge of CVD signs, symptoms, and risk factors (Goldman et al., 2006; Kothari et al., 1997). In addition, research shows that a lack of knowledge can lead
to a patient’s underestimation of CVD risk (Liewer et al., 2007). According to the Health Belief Model (HBM; Becker & Maiman, 1975) knowledge influences the patient’s perceived threat of a disease and consequently the patient’s behaviour. The HBM depicts several determinants that are important to increase a person’s likelihood to adopt preventive health behaviours (Figure 1). Furthermore, research has found that a lack of knowledge can jeopardise a patient’s adherence to the GPs’ recommended health behaviours (Frick, Gutzwiller, Maggiorini, & Christen, 2012).
Figure 1 The Health Belief Model as predictor of preventive health behaviour
Several studies have shown that patients’ knowledge can be improved via educational interventions (Mosca, Ferris, Fabunmi, et al., 2004; Stern, Berman, Thomas, & Klassen, 1999). GPs play an important role in this education and have the possibility to share
information and give explanations, summarizations, and clarifications to the patient (Beck et Perceived susceptibility to
disease “X”
Perceived seriousness (severity) of disease “X”
Demographic variables
(age, sex, race, ethnicity, etc.) Socio-psychological variables (personality, social class, peer and reference group pressure, etc.)
Structural variables
(knowledge about disease, prior contact with the disease, etc.)
Perceived threat of disease “X”
Cues to action
Mass media campaign Advice from others Reminder postcard from physician
Illness of family members or friend
Newspaper magazine article
Likelihood of taking recommended
preventive health action Perceived benefits of preventive action minus Perceived barriers to preventive action INDIVIDUAL PERCEPTIONS LIKELIHOOD OF ACTION MODIFYING FACTORS
al., 2002). Despite guidelines for GPs about communication strategies that promote patients’ knowledge about CVD risk factors (Hirsch et al., 2001; Hobbs & Erhardt, 2002; Mosca et al., 2005, Mosca et al., 2007; Pearson et al., 2002), patients reported insufficient knowledge of CVD (Gazmararian, Williams, Peel, & Baker, 2003; Williams, Baker, Parker, & Nurss, 1998). The patients’ knowledge is often measured via questionnaires and structured interviews that query patients about their knowledge of CVD risk factors (Alm-Roijer et al., 2004; Croquelois & Bogousslavsky, 2006; Kayaniyil et al., 2009; Kothari et al., 1997; Mosca et al., 2000). However, such research does not include the role of GP-patient communication in the
development of the patients’ knowledge. This study explores the patients’ experiences of their knowledge of CVD risk factors and the role that the communication with their GP plays. Patients’ understanding of CVD risk factors
In addition to a lack of knowledge, many patients reported that they perceive difficulties with understanding the knowledge and applying it to their own situation (Rogers et al., 2000). As with knowledge, patients’ understanding can lead to the adoption of behaviours that are beneficial to their health (Ong et al., 1995). Communication with the GP can help patients to gain understanding of their knowledge, their health, and their health goals (Pearson et al., 2002). However, inadequate communication can impede the patient’s understanding of the information provided by the GP (Ong et al., 1995), therefore, GPs must communicate relevant information about CVD risk in the correct way to enable accurate understanding by the
patients (Goldman et al., 2006; Hutton, Belkora, Shachter, & Moore, 2009; Neuner-Jehle et al., 2011; Waldron et al., 2011). Due to a lack of consensus found in the literature about adequate risk communication it can be difficult for GPs to decide what communication strategies to use (Naik, Ahmed, & Edwards, 2012; Zipkin et al., 2014).
Research about patients’ understanding is focussed on the patients’ understanding of CVD risk factors and their understanding of the consequences that these risk factors can have for their personal health, without considering the role of the communication with the GP
(Gholizadeh, DiGiacomo, Salamonson, & Davidson, 2011). This study considers the patients’ understanding of CVD risk factors and explores the role of risk communication with their GP. Patients’ perceived CVD risk
Another determinant of the HBM that influences the patients’ likelihood to change health behaviours is the patients’ perceived susceptibility and severity of a disease (Becker & Maiman, 1975). In this study the patients’ perceived CVD risk considers the patients’
perceptions of their susceptibility to CVD and the severity of CVD. Other research also finds that an accurate perceived CVD risk can lead to an improvement in the patients’ ability to make risk reducing decisions, and increase their intentions to engage in prevention behaviours (Lloyd, 2001; Neuner-Jehle et al., 2011; Waldron et al., 2011). Therefore, it is important for patients to have an accurate perceived CVD risk. Despite this importance a lack of patients’ accurate perceived CVD risk is found (Van Steenkiste et al., 2004). Patients reported
unrealistic views of their risks, and estimated their disease risk as being lower than it actually was. Consequently, this leads to a gap between patients’ perceived and actual CVD risk (Mosca, Ferris, Fabunmi, et al., 2004; Van der Weijden, Van Steenkiste, Stoffers, Timmermans, & Grol, 2007).
For patients to have an accurate perceived CVD risk patients’ awareness, knowledge, and understanding of CVD risk and CVD risk factors are needed (Cameron, 2013; Van Steenkiste et al., 2004; Weinstein, 1999). In addition, research shows that GP-patient communication can play a role in the increase of patients’ accurate perceived CVD risk by providing adequate information via risk communication during consultations (Frijling et al., 2002; Koelewijn-Van Loon et al., 2010; Schapira, Nattinger, & McHorney, 2001; Soureti et al., 2010).
Research about patients’ perceived CVD risk often correlates patients’ reported perceived risk to their actual CVD risk (Alwan, William, Viswanathan, Paccaud, & Bovet, 2009; Frijling et al., 2002; Van der Weijden et al., 2007). In these studies the patients’ actual CVD risk is established via GPs’ assessments or by using a standard risk prediction score. These studies do not include the patients’ experiences of the role that their GP plays in their perceived CVD risk. In the current study the patients’ perceived CVD risk is considered as well as the role that the communication with the GP plays.
The first research question is posed to analyse the patients’ experiences regarding their CVD risk awareness, knowledge and understanding of CVD risk factors, perceived CVD risk, and the role that their GP plays:
RQ1: What are patients’ experiences of the communication with their GP about CVD risk and CVD risk factors during consultations with regards to their awareness of CVD risk, knowledge and understanding of CVD risk factors, and perceived CVD risk?
Patients’ demographics: gender & age
Apart from the patients’ experiences regarding CVD risk and CVD risk factors, and the role that the communication with their GP plays, this study also considers whether the patients’ gender and age play a role in their experiences. The HBM includes demographics such as gender and age as a determinant that can influence the likelihood of people to change their behaviour. In addition, research suggests that these demographics can have an influence on GP-patient communication, and patients’ experiences of this communication (Haug, 1996). Patients’ demographics such as gender and age can lead to differences in treatment plans and patient adherence. Furthermore, research shows that male and female patients act differently (i.e. amount of talking, sharing of information, show of emotions) during consultations (Haug, 1996). However, other research finds little effect in the communication when the patients’ gender is considered (Bradley, Sparks, & Nesdale, 2001).
The current study examines whether patients’ experiences regarding CVD risk and the communication with their GP differ, when gender is considered. The reason that gender is included in this study, is because CVD is often seen as a male disease (Kayaniyil et al., 2009). However, this assumption is incorrect and leads to misconceptions about CVD risk in females (Liewer et al., 2007; Schenck-Gustafsson, 2009). Another incorrect assumption is that CVD signs and symptoms are equal for both genders. Consequently, this impedes accurate CVD risk communication, and subsequently the prevention of CVD in women (Mosca, Appel, Benjamin, Berra, Chandra-Strobos, et al., 2004; Mosca et al., 2010). Therefore, it is important to consider whether differences in patients’ experiences of communication with their GP about CVD risk are found based on the patients’ gender. This study provides the chance to explore whether GPs apply different treatments and communication strategies with their patients on the basis of their gender. This is considered through the second research question:
RQ2: What differences are found in the patients’ experiences of the communication with their GP about CVD risk and CVD risk factors during consultations when the patients’ gender is considered?
Patients’ age is another demographic that can play a role in the patients’ experiences of the communication with their GP. Research suggests that GP’s often lack knowledge and skills to provide adequate care for elderly patients, and that elderly patients have unique needs and expectations regarding their healthcare (Walker, Arnold, Miller-Day, & Webb, 2001). However, Walker et al.’s (2001) study considers the GPs’ experiences of the communication
and not the patients’ experiences. In addition, other research has found minimal differences in the communication with the GP when the patients’ age was considered (Bradley et al., 2001). Considering the demographic age in CVD risk communication is important, because older patients reported less awareness and knowledge about CVD symptoms and risk factors than younger patients (Croquelois & Bogousslavsky, 2006; Kothari et al., 1997). Furthermore, there are differences in the benefits and risks of treatments as patients get older and adequate risk communication can inform patients of these differences (Rich, 2014). This study explores whether patients in different age groups experience the CVD risk communication with their GP differently. A comparison between two age groups is made. This leads to the third research question:
RQ3: What differences are found in the patients’ experiences of the communication with their GP about CVD risk and CVD risk factors during consultations when the patients’ age is considered, distinguishing between patients in the age groups 35-74 years versus 75+ years?
Cues to action: GP-patient communication to change patients’ behaviours
Research shows that an important aspect in the prevention of CVD risk is the adoption of lifestyle behaviour changes (Graham et al., 2007; Hoekstra et al., 2009; Kohl, 2001; Pearson et al., 2002; Rivellese, 2005). The HBM states that “a ‘cue to action’ must occur to trigger the appropriate health behaviour; this stimulus can be either ‘internal’ (e.g. perception of bodily states) or ‘external’ (e.g. interpersonal interactions, mass media communications)” (Becker & Maiman, 1975, pp. 12-13). The current study explores whether the patients experience the communication with their GP as an external stimulus (i.e. interpersonal interaction), and thus as a cue to take action (i.e. change lifestyle behaviours that enhance the prevention of CVD risk). Furthermore, this study explores whether patients experience their CVD risk awareness, understanding of CVD risk factors, and perceived CVD risk as internal stimuli (i.e. perception of bodily states).
In sum, the fourth research question explores whether patients experience the communication with their GP about CVD and CVD risk factors, their awareness of CVD risk, understanding of CVD risk factors, and perceived CVD risk as cues to action to change their lifestyle behaviours and promote the prevention of their CVD risk.
RQ4: What are patients’ experiences of the communication with their GP about CVD and CVD risk factors, their awareness of CVD risk, understanding of CVD risk factors, and perceived CVD risk as cues to action (e.g. change lifestyle behaviours)?
METHODS Study design
This study was part of a larger study aimed at gaining insights about the GPs’ experiences concerning CVD risk assessment, management, and decision making processes (Bonner et al., 2013; Bonner et al., 2014a; Bonner et al., 2014b). The focus of the previous analyses was on the GP’s experiences and to a lesser extent on the patients’ experiences. The current study is a qualitative descriptive study of semi-structured interviews with 68 patients in urban areas of New South Wales, Australia. Data was gathered between February and August 2012. The Human Research Ethics Committee of the Sydney Local Health District gave ethical approval for the study.
Participants
A purposive sample was used to reflect diversity (Barbour, 2001). The sample covered a range of demographics known to influence CVD risk management (Christian, Mills, Simpson, & Mosca, 2006; Doroodchi et al., 2008; Pound et al., 2005; Schmittdiel et al., 2009). For GPs the included demographics were gender, age, and years of GP practice. For patients the included demographics were gender, age, and CVD medication (Tables 1 and 2). Table 1 Patient Participant Demographics (age 35-74 years, N = 38)
Demographic Category N Gender Female Male 21 17 Age 35-39 40-49 50-59 60-69 70-74 3 2 15 14 4 CVD medication Yes No 21 17
Table 2 Patient Participant Demographics (age 75+ years, N = 30) Demographic Category N Gender Female Male 14 16 Age 75+ 30 CVD medication Yes No 28 2 Recruitment
The recruitment of the patient participants went through their GP. Invitation letters were sent to GPs who are members of 8 Divisions of General Practice in New South Wales, Australia. Of the 50 GPs participating in the initial study, 25 GPs were asked to invite patients aged 35 to 74 years with at least one CVD risk factor, and 25 GPs were asked to invite patients aged 75 years and older with at least one CVD risk factor. This resulted in the enrolment of 38 patients aged 35 to 74 years, and 30 patients aged 75 years and older. A preliminary analysis of the interviews suggested saturation of the key themes so no further recruitment was
conducted (Bowen, 2008). Patients did not receive any payment for participating in the study. Data collection
The research team of the initial study developed a semi-structured interview schedule. Sensitizing concepts were CVD risk assessment, management, and GP-patient
communication. To increase the internal reliability of the study the interview schedule was piloted with a convenience sample, and revised to improve question clarity. The interview schedule included how patients’ CVD risk is assessed by their GP, how it is managed, and how the GP-patient communication about CVD risk is experienced by the patient (Appendix A – Interview schedule).
For the current study the sensitizing concepts were CVD risk awareness, knowledge, understanding, and perceived risk. To assess awareness questions such as “Is heart disease something you think about in relation to your health?” and “Would you say your general health is a) Excellent b) Very good c) Good d) Fair e) Poor – Why do you think your general health is that level?” were used. For knowledge the questions “What do you think puts people at higher risk of developing heart disease?” and “How does your doctor explain/describe this [test results] to you?” were assessed. Understanding was assessed with “Have you ever had any discussions with your doctor about heart disease risk or risk factors?” and “Why do you
think your doctor recommended changing your lifestyle?” Lastly, perceived risk was assessed with “How has this [being at higher risk of CVD] affected how you feel about your health and about your life generally?” and “How do you feel about attending your regular check-ups?” Before being interviewed in person (N = 7) or by telephone (N = 61) participants signed a form of consent. Interviews lasted between 22 and 55 minutes. The audio-recordings were anonymised by using participant ID numbers, and transcribed verbatim by Notetaking Solutions (Appendix B – Example patient interview). Any references in the transcripts that revealed identifying information were removed from the files. Two researchers trained in public health qualitative research methods (C. B., S. M.) conducted the interviews.
For the analysis of the interviews the qualitative software program Atlas.ti was used. This was a useful tool to create and group codes, and write memos. Furthermore, making links and comparisons, and searching through the dataset was facilitated by the program.
Thematic Analysis: six phases
The method used for the qualitative analysis was thematic analysis (TA; Braun & Clarke, 2006). Thematic analysis is “a method for identifying, analysing and reporting patterns (themes) within data” (Braun & Clarke, 2006, p. 79). The themes organize and describe the data in detail and enable interpretations of the data. The phenomenological nature of this study made TA a suitable method. The six phases of TA were used to analyse the data in a structured way (Table 3).
Table 3 Phases of thematic analysis
Phase Description of process
1. Familiarizing yourself with your data:
Transcribing data (if necessary), reading and re-reading the data, noting down initial ideas.
2. Generating initial codes:
Coding interesting features of the data in a systematic fashion across the entire data set, collating data relevant to each code. 3. Searching for themes: Collating codes into potential themes, gathering all data relevant
to each potential theme.
4. Reviewing themes: Checking if the themes work in relation to the coded extracts (Level 1) and the entire data set (Level 2), generating a thematic ‘map’ of the analysis.
5. Defining and naming themes:
Ongoing analysis to refine the specifics of each theme, and the overall story the analysis tells, generating clear definitions and names for each theme.
6. Producing the report: Ongoing analysis to refine the specifics of each theme, and the overall story the analysis tells, generating clear definitions and names for each theme.
For the first three phases an inductive approach was used. This prevented preconceptions to shape the analysis and the outcomes (Bowen, 2008). After phase three a literature study was conducted to find out if the potential themes are familiar concepts. This made the last three phases of the analysis of a deductive nature (Fereday & Muir-Cochrane, 2008). Reflective notes were taken throughout the analysis to help with the interpretation and meaning making of the data (Pope, Ziebland, & Mays, 2000).
In phase one the entire transcribed dataset was read. Initial impressions related to the research questions, sensitizing concepts, and aim of the study were written down.
Phase two consisted of generating codes for the entire dataset. Interesting statements and opinions of the patients were systematically coded. This resulted in 25 to 98 coded quotes per interview. A total of 87 codes was created. Each code was used between 1 and 210 times. There were 55 codes that occurred at least 15 times. Codes included information about check-ups, medication, GP-patient communication, CVD risk factors, lifestyle behaviour, general health, gender, family history of CVD, satisfaction with healthcare, and consultation improvements (see Appendix C for a complete overview of the codes). To clarify decisions and keep track of thoughts memos were written (see Appendix D for examples of the memos). In the third phase codes that deal with similar features were grouped together. Out of the 87 codes, 62 codes were used to form potential themes. The other 25 codes discussed different features and were not included in the potential themes. The created potential themes were patients’ CVD risk awareness, knowledge, understanding, and perceived risk (Table 4). Table 4 Examples of grouped codes with the potential themes
Code N Potential theme
General health; patient does consider heart 55 Awareness
General health; patient does NOT consider heart 26
CVD risk factors; smoking 29 Knowledge
CVD risk factors; overweight 16
GP-patient communication; patient does make link between CVD and the risk factors cholesterol/ blood pressure
60 Understanding GP-patient communication; patient does NOT make link
between CVD and the risk factors cholesterol/ blood pressure
29
Check-up; frequency 142 Perceived risk
Check-up; usefulness 68
Prior to the start of phase four, peer debriefing was conducted to add methodological rigor and internal validity to the study. An experienced qualitative researcher (J.J.) analysed some of the interviews independently. A discussion followed to assess whether similar
interpretations, codes, and potential themes were found. When there was agreement about the findings, phase four was started. In phase four the data was reanalysed to conclude whether the potential themes were valid and representative for the entire dataset. Phase four consisted of two levels. Level one consisted of reading the coded quotes and checking if they fit with the potential themes. Level two consisted of re-reading the interviews, and coding any
additional data that was important to support the themes and was missed during initial coding. When the potential themes were found satisfactory and representative of the data phase five started.
In phase five each theme’s content was accurately defined and names that clearly illustrated the themes’ content were chosen (Table 5). To ensure that each theme was mutually exclusive the potential themes knowledge and understanding were joined to form one theme. This resulted in the theme “knowledge and understanding of CVD risk factors”. Apart from this adaption there were few changes made to the themes found in phase three. For each theme a range of four to five subthemes were created (Table 6).
Table 5 Final names and definitions of themes
Theme Definition
Awareness of CVD risk Assesses whether patients are aware of their potential CVD risk. This includes patients’ awareness of their heart condition in relation to their CVD risk and their general health.
Knowledge and
understanding of CVD risk factors
The knowledge that patients have about specific CVD risk factors that contribute to the development of CVD (e.g. high cholesterol, high blood pressure), and the patients’
understanding of the consequences of these risk factors to their personal health situation.
Perceived CVD risk The CVD risk that patients perceive when they think about their health, and the likelihood of health problems to occur caused by CVD risk factors.
The final phase six was the thick description of the analysis and the results. A selection of quotes were used as examples that demonstrated and explained the interpretations, and supported the answers given to the research questions. The thick description added external reliability to the study. A concept indicator model was developed that provided a visual representation of the findings. The model included the aim of the study, the themes, and the
subthemes. The visual representation aided in making connections and facilitated the interpretations of the results (Appendix E – Concept indicator model).
Table 6 Themes and subthemes
Theme Subtheme
1: Awareness of CVD risk
1.1) Patients’ consideration of the heart as part of their general health 1.2) Family history of CVD
1.3) Personal life experiences 1.4) Lifestyle behaviour changes 2: Knowledge and
understanding of CVD risk factors
2.1) CVD risk factors
2.2) Information provided by the GP
2.3) Understanding the information provided by the GP 2.4) Family history of CVD
2.5) Lifestyle behaviour changes 3: Perceived CVD
risk
3.1) Family history of CVD & personal life experiences 3.2) Feelings about health
3.3) Check-ups, test results, & medication 3.4) Lifestyle behaviour changes
RESULTS
The main results are discussed per theme and each theme consists of four or five subthemes. The patients’ experiences of the communication with their GP about CVD and CVD risk factors, the patients’ CVD risk awareness, knowledge and understanding of CVD risk factors, and perceived CVD risk are discussed. For all of the findings differences in the patients’ experiences regarding gender and age are considered and reported on.
Theme 1: Awareness of CVD risk
Subtheme 1.1) Patients’ consideration of the heart as part of their general health To evaluate if patients are aware of their CVD risk the patients were asked whether they consider their heart when they think about their health in general. Results show that one third of the patients do not consider their heart when they think about their general health. When considering gender, slightly more men (three quarters) consider their heart when thinking about their general health than women do (two thirds). No differences were found for age. The following quote illustrates that the patient does not consider his heart in relation to his general health.
“No, not really, I, I, I don't cut back on anything for it or that. I have, I haven’t had any problems since, since I had the, the stent put in so.” (ID78, male, 77 years)
This example shows that despite the operation the patient does not consider himself to be a CVD patient and does not really consider his heart when thinking about his health in general. In addition, the patient does not try to diminish his CVD risk by changing his lifestyle
behaviour (i.e. “cutting back on anything”). Subtheme 1.2) Family history of CVD
Results show that family history can help in raising patients’ awareness. In comparison to patients without a family history of CVD, the patients with a family history of CVD are more likely to consider their heart when they think about their general health. No differences were found for gender. However, when considering age the elderly patients do not mention their family history of CVD as much as the younger patients do. The following quote shows that a man’s family history of CVD played a role in his awareness of CVD risk.
“Well because it’s the history of me family, I mean both parents died from...me mother died from a massive stroke, me father died of a heart attack so and plus me two
brothers...so yeah.” (ID16, male, 42 years)
Subtheme 1.3) Personal life experiences
For the majority of patients personal life experiences play a role in raising their awareness of CVD risk. Personal life experiences include CVD events that happened to the patients
themselves or to people in the patients’ environment (e.g. colleagues, friends, acquaintances). No differences were found for gender. With regards to age, the younger patients reported less frequently about personal CVD episodes and operations than elderly patients, and reported more frequently that their CVD risk awareness was raised after CVD events in the patients’ environment. The quote below shows that the patients’ awareness was raised through a personal life experience.
“…the real learning was in the catastrophic event that I had, that was the learning factor I think and after that I just changed my whole attitude and mind set to…to diet, alcohol, exercise, stress, so that's really, that was the change event as it were. So I mean I’m not sure how you would impress on people that their heart is very important if they're actually not giving it the importance that they should. There are, you always need some sort of a catalyst of an event of some sort to actually heighten the
important than things you do every other day like go to work and have, be with your family and things.” (ID8, male, 64 years)
Subtheme 1.4) Lifestyle behaviour changes
Many patients indicated having changed or having the intention to change lifestyle behaviours after becoming aware of their CVD risk. The abovementioned quote (ID8, male, 64 years) shows that the patient’s raised awareness functioned as a trigger for the patient to change certain lifestyle behaviours such as diet, exercise, and stress. Patients also reported that discussions about CVD and lifestyle behaviour changes with the GP raised their awareness and played a role in their motivation to incorporate lifestyle behaviour changes. No
differences were found for gender and age.
Theme 2: Knowledge & understanding of CVD risk factors
Subtheme 2.1) CVD risk factors
The majority of the patients have quite a good basic knowledge of CVD risk factors, although not all patients mention the same amount of CVD risk factors or are as precise as others in naming them. Most patients mentioned CVD risk factors regarding lifestyle behaviours such as having a bad diet (N = 45) and a lack of physical exercise (N = 39). Few patients mentioned high cholesterol (N = 5), high blood pressure (N = 3), and diabetes (N = 2) as CVD risk
factors. No differences were found for gender. The elderly patients were able to mention less CVD risk factors than the younger patients. Elderly patients also reported more often that they do not know any CVD risk factors. The following quote illustrates a patient’s reported CVD risk factors.
“Lifestyle (laughter). So basically being yeah unhealthy living….lack of diet and exercise.” (ID1, female, 50 years)
Subtheme 2.2) Information provided by the GP
Most patients were satisfied with the healthcare provided by the GP and the knowledge they gained from this. However, some patients reported that the GP does not provide enough information. The next quote is an example of a patient who reported being dissatisfied with the information provided by the GP.
“I do feel in that area Doctors tend to not inform their patients…to the extent they should. I feel that you’ve always got to quiz your Doctor as to why…and tendency to
say well I think we will do this or do that…and the reason is not…really or is very rarely explained to you.” (ID47, male, 78 years)
Patients also reported that the information provided by the GP is often about the patient’s specific health problems and mainly concerns information about test results for CVD risk factors (e.g. cholesterol, blood pressure). The following quote illustrates this.
“Yes I did get the results in the mail and we did….have a look on the screen together but the discussion was…less, minimal so she would just focus on look this result is not ok we better adjust your medication or something, we didn't do the whole thing.” (ID24, female, 56 years)
No differences were found for gender and age.
Subtheme 2.3) Understanding the information provided by the GP
All patients reported that they had discussed cholesterol and blood pressure with their GP. Two thirds of the patients understood that these discussions were about CVD risk factors and their personal CVD risk. However, one third of the patients did not have this understanding. These patients saw high cholesterol and high blood pressure as separate diseases without the realisation that they are CVD risk factors. Slightly more men reported understanding the link between these CVD risk factors and their CVD risk. No differences were found for age. The following quote illustrates the patient’s lack of understanding. The patient does not relate the communication with the GP about the CVD risk factor cholesterol to her heart health.
“I haven't gone into it with her about heart disease, I haven't discussed with her, yeah diet we have discussed, of being a way of getting it down. We have discussed exercise as well and weight but it's all to do with cholesterol not so much...talking about heart.” (ID12, female, 54 years)
Subtheme 2.4) Family history of CVD
Results show that family history of CVD can raise patients’ knowledge and understanding of CVD risk. No differences were found for gender and age. The following quote shows how a woman reported that her knowledge and understanding of CVD improved after several family members were diagnosed.
“I understand it pretty well, I don't really need it explained to me because I know all about the family history. And…my mother had a bypass, my father had a bypass and
my brother has had a heart attack. So, I am fairly well informed about….everything and know, I am quite knowledgeable about heart disease.” (ID53, female, 53 years)
Subtheme 2.5) Lifestyle behaviour changes
Most patients reported that they had discussed lifestyle behaviour changes with their GP. Patients also reported that if they had discussed with their GP that they prefer to avoid
medication, that the GP emphasised improving CVD risk through lifestyle behaviour changes. Results show that discussions about CVD risk and lifestyle behaviour changes with the GP can help raise a patients’ knowledge. Conversely, a patient’s knowledge helps the patient to incorporate lifestyle behaviour changes. The following quote shows that discussions with the GP raised the patient’s knowledge and were helpful to incorporate lifestyle behaviour
changes.
“…the GP sort of got into more detail about the best foods to eat and that sort of thing...and exercise sort of because I had the chronic back problems we’ve sort of done a bit of work trying to find appropriate exercises that I can do so we’ve worked out a few things there which has been helpful.” (ID14, male, 55 years)
The patients’ decisions to change lifestyle behaviours varies across patients. Many patients reported that they are aware of the negative consequences of unhealthy lifestyle behaviours but they do not always change their lifestyle behaviours. The following quote shows that the patient knew smoking was bad for her health but she continued with the unhealthy lifestyle behaviour.
“Oh, I was a fairly heavy smoker and I knew that I….that you know one always likes to skim on thin ice. Yeah so I…I gave up, I was in hospital for…oh, 3 weeks I suppose after I infarcted and…I miss it every day but I’ve never put another cigarette in my mouth.” (ID45, female, 74 years)
No differences were found for gender and age. Theme 3: Perceived CVD risk
Subtheme 3.1) Family history of CVD & personal life experiences
Most patients reported a higher perceived CVD risk when a family member was diagnosed with CVD. A higher perceived CVD risk was also reported by patients with a personal life experience regarding CVD. Personal life experiences include CVD events that happened to
the patients themselves or to people in the patients’ environment. No differences were found for gender and age. The following quote shows a patient’s perceived CVD risk after being diagnosed with high cholesterol.
“…I’m conscious of it and I do regularly get cholesterol tests every 6 months just to keep an eye on it. Yes so it does make me feel that I am vulnerable.” (ID30, female, 69 years)
Subtheme 3.2) Feelings about health
Patients with a high(er) perceived CVD risk were more likely to report feeling concerned about their health than patients with a low(er) perceived CVD risk. No differences were found for gender. Age plays a role in the way that patients deal with their perceived CVD risk. Elderly patients are more likely to accept their high(er) CVD risk. A high(er) perceived CVD risk does not change how elderly patients feel about their health. The following quote
illustrates this.
“Well no I, I don't really think about it no, if it's going to happen it's going to happen. I’m now 78 so I’m quite in that you know, it can happen any day sort of thing but I don't think about that. That's you know, I’m not worried about it.” (ID90, male, 78 years)
Younger patients are more likely to feel distressed about their health when they reported a high(er) perceived CVD risk.
Subtheme 3.3) Check-ups, test results, & medication
Results show that it is difficult for patients to have an accurate perceived CVD risk if there are no clear symptoms or test results. If test results show that the patient is at risk, patients
reported a higher perceived CVD risk. Patients also reported that lowering medication dosage, positive test results, and a lower check-up frequency were reasons to believe that they are not at risk. No differences were found for gender and age. The following quote illustrates a patient’s perceived CVD risk according to the test results.
“Oh it's reassuring...when you've got good results (laughter).” (ID25, male, 58 years)
Subtheme 3.4) Lifestyle behaviour changes
When patients perceive themselves at risk they reported being more inclined to make the necessary lifestyle behaviour changes. No differences were found for gender and age. The
following quote is from a patient who has diabetes. The test results play a role in the perceived CVD risk and are a way for the patient to assess his current health status. In the given example the patient explains that the test results had been bad for the last 9 months. To get the results at a desired level and avoid further CVD risk the patient needed to change his lifestyle behaviours (i.e. “taking better care of myself”).
“…that was at a time when the results were too high and had been too high for 9 months. I got them back into within the adequate range and so I think I was justified in rejecting the insulin injection because I was able to achieve better outcomes just by taking better care of myself.” (ID13, male, 58 years)
DISCUSSION
This study uses semi-structured patient interviews to gain insights into patients’ experiences regarding their awareness of CVD risk, their knowledge and understanding of CVD risk factors, their perceived CVD risk, and the role that the GP-patient communication during consultations plays. In addition, to assess whether patients’ experiences differ for varying patient demographics the patients’ gender and age are considered. The main findings of the study show that patients are reasonably aware of CVD risk and knowledgeable about CVD risk factors. However, their understanding of the consequences of CVD risk factors to their personal health and their accuracy of perceived CVD risk are often lacking. Furthermore, patients’ family history of CVD, personal life experiences, check-up appointments, test results, and medication play a role in patients’ experiences of CVD risk. Finally, the patients experiences of CVD risk, and their communication with their GP about CVD risk and CVD risk factors play a role in patients’ lifestyle behaviour changes.
Theme one explored the patients’ CVD risk awareness. Results show that one third of the women and one quarter of the men reported that they do not consider their heart when they think about their general health. Initially this might not seem alarming, however, the patients all possess at least one CVD risk factor and often receive medication for this. Therefore, the patients’ lack of consideration of their heart shows that not all patients are aware of CVD risk as a potential threat to their health. An American study finds that only 8% of randomly selected women (≥25 years) are greatly concerned about their heart health and only 33% perceive CVD as the leading cause of death (Mosca et al., 2000). The current study shows that in addition to a lack of awareness in a random selection of women, a lack of CVD risk
Patients’ knowledge and understanding of CVD risk factors was explored in theme two. The majority of patients was able to mention a range of CVD risk factors. However, it appears that patients insufficiently apply their knowledge of CVD risk factors to their personal health situation. Patients’ reported CVD risk factors were often correct but patients fail to adapt their lifestyle behaviours to this knowledge in order to prevent CVD. Furthermore, patients often reported that the communication with their GP about CVD risk is mainly focused on the treatment of the patients’ CVD risk factor(s) and does not include general information about CVD risk. This shows that consultations are focussed on CVD risk treatment instead of CVD risk prevention. In addition, a lack of understanding of the communication with the GP is found. Even though patients reported that they had discussed cholesterol and blood pressure with their GP, one third of the patients say that they have not discussed CVD risk with their GP. This shows that the patients lack the understanding that cholesterol and blood pressure are risk factors that are linked to CVD risk. Previous research also shows that patients
reported a lack of knowledge and understanding of CVD risk factors and emphasises the need for effective and better ways of communicating CVD risk to patients (Rogers et al., 2000). The third theme explored patients’ perceived CVD risk regarding their personal health. Patients who reported a high perceived CVD risk were often also more aware of CVD risk. Furthermore, family history of CVD and personal life experiences play a role in patients’ perceived CVD risk as well as patients’ check-up appointments, test results, and medication. Conversely, patients’ knowledge of CVD risk factors plays a less important role for patients’ accurate perceived CVD risk. Other research also finds that patients often base their perceived CVD risk on personal experiences and not on their knowledge (Van Steenkiste et al., 2004). In addition, patients reported that perceived CVD risk plays a role in their adoption of lifestyle behaviour changes that promote CVD risk prevention. Previous research supports this finding and shows that perceived CVD risk can influence a patient’s intention to engage in prevention behaviour (Sheridan et al., 2010).
Furthermore, patients’ gender and age were considered to explore whether these
demographics lead to differences in patients’ experiences. Results show that only small differences were found with regards to gender. Slightly more men consider their heart when they think about their general health than women do. This is consistent with the findings that CVD is often considered as a male disease (Kayaniyil et al., 2009). As with gender there were only small differences found for age. The first difference was found in the patients’
CVD risk factors and they were more accurate than elderly patients. This finding is supported by research that shows that elderly patients are less knowledgeable about CVD symptoms and risk factors than younger patients (Croquelois & Bogousslavsky, 2006; Kothari et al., 1997). Another difference between the age groups is found when the patients’ feelings about their health and their perceived CVD risk are explored. The elderly patients often reported that they had a good life and accepted their health complications. Younger patients reported that a high(er) perceived CVD risk and health complications caused distress and impacted on their feelings of general health and quality of life. These findings suggests that patients can benefit from tailored communication in which the GP takes the patients’ differences into account when communicating CVD risk (Bensing et al., 2013; Mazzi et al., 2013).
Finally, this study considered the HBM’s determinant cue to action and explored whether the patients experience the communication with their GP as an external stimulus to change their lifestyle behaviours and thus enhance their prevention of CVD risk. Possible internal stimuli that were considered, were patients’ awareness of CVD risk, understanding of CVD risk factors, and perceived CVD risk. This study shows that patients experience both external and internal stimuli as cues to action to change their lifestyle behaviours. Patients often reported that their GP had discussed lifestyle behaviour changes and that they tried to adhere to the GP’s recommendations (i.e. external stimulus). Patients also often reported that a raised CVD risk awareness, understanding, and perceived risk played a role in their adoption of lifestyle behaviour changes (i.e. internal stimuli). However, improvements remain to be gained as the results also show that patients often lack CVD risk awareness (e.g. they do not consider their heart when they think about their general health), understanding of CVD risk factors (e.g. patients do not link discussions with their GP about cholesterol and blood pressure to CVD risk), and accuracy of perceived CVD risk (e.g. patients often based their perceived CVD risk on personal life experiences and not on their knowledge of CVD risk factors). Furthermore, despite patients’ reported efforts to adhere to their GP’s recommendations patients often reported that their lifestyle behaviours did not enhance CVD risk prevention (e.g. lack of physical exercise, unhealthy diet, smoking).
Limitations & future research
The qualitative nature of the performed analysis resulted in subjective interpretations of the patients’ experiences. In addition, the data consisted of patients’ self-reports that are subject to patients’ recall. Research shows that accurate recall of GP-patient communication is often
lacking in patients (Linn, Van Dijk, Smit, Jansen, & Van Weert, 2013). Therefore, it would be interesting to analyse data that is collected during GP-patient consultations (e.g. video- or audio-taping consultations). This could provide data of actual GP-patient interactions that are not limited to patients’ recall.
Furthermore, it would be interesting to change certain demographics of the participant sample. To enhance the prevention of CVD risk it could be interesting to assess the
experiences of a younger group of patients (≤ 35 years). Another demographic that could be changed is the area from where the participants are recruited. The current study recruited participants from urban areas in a developed country. However, rural areas or countries that are underdeveloped or have a different culture might reveal different patient experiences regarding CVD risk.
Conclusion & implications
Results show that the majority of the patients reported that they were satisfied with the way that their GP discussed CVD risk. However, the role that the communication with the GP played in patients’ experiences of their CVD risk awareness, knowledge and understanding of CVD risk factors, and their perceived CVD risk was often minimal. Factors that played a more prevalent role were family history of CVD and patients’ personal life experiences. The communication with the GP played a more important role when check-up appointments, tests, and medication were needed. However, for the prevention of CVD risk it is important that the role of the GP starts in an earlier stage, before the onset of CVD risk factors. Research shows that women between the age of 25 and 44 years reported lowest on CVD risk awareness and knowledge (Mosca et al., 2000). In addition, research shows that GP-patient communication plays a role in raising patients’ CVD risk awareness, knowledge, understanding, and
perceived risk (Frijling et al., 2002; Koelewijn-Van Loon et al., 2010; Kothari et al., 1997; Schapira et al., 2001; Soureti et al., 2010). Therefore, it is important to improve GP-patient communication by providing guidelines for GPs about effective CVD risk communication with patients (Beck et al., 2002). GPs thus need to be educated and trained to use these guidelines and adequately communicate CVD risk (Goldman et al., 2006; Neuner-Jehle et al., 2011).
ACKNOWLEDGEMENTS
I would like to thank Jesse Jansen, Carissa Bonner, and Shannon McKinn for disclosing their research data to me. This enabled me to perform my analysis and gain insights into an
interesting field of healthcare communication. In addition, I would like to thank Jesse Jansen who played a role in the peer debriefing procedure and enabled me to discuss the data with an expert in the field. Furthermore, a very special thank you to my supervisor Annemiek Linn for all her efforts and guidance throughout the course of my research. Lastly, I want to thank my mother for all her help, love, and support.
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