A longitudinal study on the information needs and preferences of patients after an acute coronary syndrome

Cardiovascular diseases (CVDs) are currently the largest single contributor to global mortality and will continue to dominate mortality trends in the future. Even though it is well known that modifiable factors related to lifestyle habits are major contributors to CVDs [1‐5], patients generally fail to adhere correctly to medical advice or to change their unhealthy behaviors, causing continuous hospital readmissions [6, 7]. Literature has shown that the effective provision of appropriate health information is associated with better patient adherence to medical prescriptions [8], behavioral change [9, 10], increased patient satisfaction, reduced levels of psychological distress and enhanced perception of control over the disease [11‐13]. Nevertheless, patients are often dissatisfied with the information that they receive, reporting unfulfilled needs in different areas related to disease care [14, 15]. In addition, patients’ needs are not always perceived correctly by health care providers [16, 17], compromising the quality and effectiveness of information provision. This situation may be due to insufficient knowledge on patients’ needs and, most importantly, on how those needs change over time. Evidence suggests that patients regarded all types of information as important, with a preference for three categories: medication, risk factors, and cardiac anatomy and physiology [18‐24]. However, almost all of the studies used cross-sectional methods, which do not permit prediction of future need. One recent study has been conducted with the aim of investigating how patients’ information needs change over the course of a six-month long cardiac rehabilitation program, but it is still a cross-sectional study. It found that patients were significantly more interested in information about emergency/safety at the beginning of the program, while information about general/social concern and risk factors was preferred at the middle [25]. However, the adoption of a cross-sectional design is not appropriate for studying change over time. Other methodological weaknesses of these studies include small samples and the recruitment of participants at varied time points in the disease journey. Also, few studies included analysis of the relationships between needs and socio-demographic variables [26]. For instance, the role of gender is largely unexplored, although a few studies suggest that women want to be better informed and more active in the decision process than men [23, 27]. Women wanted more information overall, but also about specific topics such as angina and high blood pressure, whereas men wanted more information about sexual functioning [23].

Describing what information is needed for cardiac patients, from whom and at which point over the course of the disease is necessary to provide meaningful insight on how to enhance rehabilitation programs for two main reasons. First, the length of hospital stays for patients undergoing various cardiac procedures has decreased in recent years, especially for patients who have been treated for coronary heart disease [28, 29]. Actually, in the Italian health care system, patients with an episode of Acute Coronary Syndrome (ACS) are hospitalized for a period that can range from three to ten days (depending on the seriousness of the event). After discharge, patients follow an outpatient multifaceted and multidisciplinary rehabilitation program to improve functional capacity, recovery and psychological well-being [30, 31]. Rehabilitation program usually last for four weeks, during which patients attend physical activity sessions and educational courses with the aim to learn the role of behaviors in the management of CVDs. There are different follow-up medical examinations at one and six months after the ACS event, in which physicians assess the overall health status of the patient and check the pharmacological treatment making any appropriate changes (more other follow-up visits could be done in the following months depending on patient’s health situation). The shortened hospital stay and the few moments devoted to follow up examinations reduce health care practitioners’ opportunities to provide patients with health information. A second reason for why it is important to study the change in patients’ need and preferences refers to the psychological shock that is often experienced by patients after an acute cardiovascular event. The negative emotions (e.g., fear, anxiety, depression) related to the disease could limit patients’ abilities to absorb information during hospitalization and the days following the discharge. Due to the great importance of effective communication in chronic disease management and the lack of empirical evidence on what happens to need and preference for information over the course of disease, the aim of this study was to determine whether and how these variables change over time in a population of patients at their first ACS event. We also wanted to understand which information sources are perceived as most relevant in addressing health information. Research showed that physicians were preferred over nurses [26], while media sources like television or written material were less popular among cardiac patients [32]. However, there is no consensus in findings [19] and the methodological weaknesses reported above hold for this topic as well.

The research questions of the present study were as follows:

This longitudinal study aimed to gain understanding of how the information needs and perceptions on sources of health information of patients with ACS may change over time in order to be able to better tailor information giving. To our knowledge, this study is among the first to quantitatively investigate in the ACS setting information needs and perceptions over time and which characteristics are related to a possible change in needs and perceptions.

A reduction in information needs in all six domains related to disease management was observed, but the decrease was significant only for daily activities, behavioral habits, and risk and complication. For information related to drugs, knowledge about the pathology and on how to manage the distress, a non-significant decrease was revealed.

A possible explanation of the overall decrease of patients’ needs is that immediately after their first cardiac event patients desire all of the information they can get to cope with the new situation and to manage the distress caused by the illness and the cardiac procedures they have undergone. Then, over time, this desire decreases with a gradual reduction in the disease symptoms and greater experience with the condition [21, 34, 35]. Another explanation could be related to the transformation of the patients’ role during the course of the disease. At the beginning patients play a more passive role in the management of their situation; they are located in a controlled place and must comply with medical direction. After discharge and over the following months patients become more active, choosing on what information to focus their attention. It is important to note that the two domains directly related to self-management of the disease, daily activities and behavior, are the topics patients wanted to be less informed about over time, while they continued to desire “medical” information about drugs and pathology. This preference for medical information over information about lifestyle has been shown in previous research [16, 36, 37] and deserves attention by health practitioners. It could be supposed that patients don’t want information on daily life activities or behavior because they already have correct habits. However this supposition is not sustained by research, which shows that patients fail to adhere correctly to medical advice or to change their unhealthy behaviors, causing continuous hospital readmissions [38].

Socio-demographic characteristics were partially associated with information needs and with their changes over time. In particular, being married was significantly associated with needing more information on behavioral habits and distress over time. This could arise from the fact that, in addition to their own worries and anxiety, patients have to manage their families’ distress. Spouses usually do not participate in the educational programs offered by hospitals and they may feel incapable of providing optimal support to their sick partners. As a consequence they could increase patients’ anxiety by their own apprehension. Perhaps patients’ high information needs also reflect partners’ needs for information on topics on which they could have a primary role. The informational topic related to the management of stress and worries caused by the disease was the one which was most related to sociodemographic variables over time; in fact, it was associated not only with marital status, but also with age and employment, with older patients who do not work (both for retirement and unemployment) who desire less information at the beginning of the disease and over time. These relationships seem to underline that younger patients are more aware of the dangerous role of distress for health and they experience a deeper burden related to the disease in comparison with older patients. Patients’ education level was significantly associated with information needs only at the beginning of the disease. In particular, highly educated patients wanted less information about pharmacological treatments and more information about daily activities and behavioral habits. This could reveal greater knowledge about the treatment as well as a greater understanding of their crucial role in the disease management. Other relationships arose at baseline between being female and desire more information on daily life activities and risk and complications of the disease. This result is in line with some evidences in research, which suggest a non-participatory role adopted by men and older patients in the management of their illness and a greater desire for information in women [23, 39, 40]. However, there is a lack of consensus in research on the role of socio-demographic variables in explaining patients’ needs [33].

Regarding information sources, both the repeated measures Anova and the Cochran Test show similar results. Patients reported having received information from GPs in a higher amount over time and perceiving this source as more relevant during the follow-ups. These results may be explained by an increase in the number of consultations over the course of the disease. In fact, it is unlikely that immediately after a cardiovascular problem patients interact with a GP, except for drug prescriptions. After the discharge patients tend to consult the specialist less and mainly refer to the GP for any advice on disease management. The relevance of the specialist does not increase over time, most likely because of a ceiling effect: patients indicated high scores for the specialist at baseline, making it impossible to score significantly higher on the follow-ups. The relevance of “Magazines”, “Internet”, and “Television” increased over time; in addition, the results show that patients received significantly more information from these sources as the time passed, maybe due to a more active role of the patients after discharge; it is possible that in the first few weeks/days after the heart attack, they follow the lead of specialists without actively searching for autonomous additional information. Then, with a reduction in the medical examinations, patients may pay more attention to other sources. However, it is important to note that the scores for these sources, together with information leaflets given by associations and friends do not reach the 2.5 level, indicating that these sources are not perceived to be highly significant. Regarding family and information leaflets given by physicians, their relevance decreases after twelve months, showing that these sources are perceived as mildly relevant only at the beginning and in the few months following the disease. Surprisingly, we have not observed the Internet to be of great importance in informing patients about health, even though there is a significant increase in the use of this source. Maybe the perceived lower relevance of the Internet could be explained by the characteristics of our sample: patients participating in this study had a mean age of 57 years, and more than 26% of them were retired; they may thus not be familiar with computer and Internet use and prefer to use simpler sources to gather information. This hypothesis is confirmed by the significant relationship between education level and the perceived relevance of this source. In addition, Italy lags behind other countries in the use of the Internet [41] and this could be a further explanation of this result.

Even for the relations among sociodemographic variables and sources of information, multiple patterns of relationships emerged at the beginning of the disease and over time. In particular, at baseline, age, gender and education influenced patients’ perceptions, with male, elderly and low educated patients who rely more on the information provided by general practitioners, family members, television, and information leaflets. Some relationships between sociodemographic variables and patients’ perceptions remain significant over time; in particular, marital status was related with the perceptions of relevance of friends, family and information brochures, with married patients that perceive these sources as more relevant as the disease progresses. Such patients seem to prefer “traditional” ways to obtain information, like direct discussions with physicians or other people, written take-home information, or videotapes, maybe because these sources are more reassuring and allows them to take some control over their health [23].

The definition of how patient needs and perceptions change during the course of a chronic disease provides information upon which to inform and guide future research and facilitate information provision based on the preferences set by the patient, relevant to their individual situation and context. These findings present an opportunity for healthcare practitioners (HCPs) to be aware of their patients’ information needs and be able to recognize how much information their patients may require in each moment of the disease.

As such different recommendations emerge:

The information needs and the perceptions on different sources of information of patients with ACS change as the disease progresses. Taking into account these changes is pivotal to develop patient-led services and to enhance the quality of chronic disease management, leading health-care systems to move toward more patient-tailored care. Findings from this study have the potential to inform and guide HCPs, in particular general practitioner which are perceived ad more relevant as the time passes, on how to better provide health information to patients throughout the entire course of a chronic disease.