Background
In patients with different chronic diseases such as diabetes, asthma, and arthritis, patient education is a crucial non-pharmacological treatment to better manage the disease and optimise health [
1,
2]. Patient education can be described as an interactive process between patients and the healthcare providers [
3,
4], through different learning activities, with the aim of supporting and strengthening the patient’s self-efficacy and adherence to both pharmacological and non-pharmacological treatment [
2]. The progress in the last decade, from the healthcare provider being seen as the expert, towards an active process between the healthcare provider and the patient, is well accepted. This principle of shared decision making between the healthcare provider and the patient is a cornerstone in the management of patients with different chronic diseases, where the patient takes an active role in decision making regarding his or her health [
3,
5,
6]. Patient education can be given as a group intervention or as an individual intervention on a one-to-one basis, in different settings [
1,
7,
8]. The patient education includes both information on the disease – for example, concerning symptoms, consequences, treatment, physical activity, exercise, and assisting devices – and emotional support, such as the confidence to act (self-management) and discussion of influences on social circumstances [
1,
3]. Individually tailored education have been requested [
7] but often the prioritisation of topics to be discussed still differs between patients and health professionals [
5]. Patient education has spread more widely than within healthcare itself, with e-health and web-based health resources such as telehealth platforms, online communication services, and smartphones emerging as new methods of communication and education [
3,
9‐
11].
Spondyloarthritis (SpA) is a rheumatic umbrella diagnosis covering different sub-diagnoses [
12,
13]. SpA is chronic in most cases, with the main physical symptoms in the axial skeleton. The patient often has an early disease onset and a life-long burden affecting several aspects of life – physical, mental, and work-related – as well as the effects of the disease on health-related quality of life [
14‐
19]. Different experts in the field of arthritis have recommended a combination of pharmacological therapy and non-pharmacological treatment – including regular exercise and patient education – as an integral part of the disease management of SpA [
2,
20‐
23]. Evidence based recommendations for education in patients with arthritis in general have recently been developed, addressing when, how, to whom, and by whom the education should be delivered and evaluated [
2].
There have been widely different approaches to the structure of educational interventions, with effects on self-efficacy, psychological functioning, and physical functioning, even though all interventions are not necessarily equally suited to all patients with arthritis [
24‐
31]. There is a demand for flexible management [
26], and patient education in patients with arthritis should be individually tailored to the patient’s specific needs and priorities [
2,
8,
32]. Most of the research in the field of arthritis is based on patients with rheumatoid arthritis, which is the most common rheumatic disease. The form of patient education methods that is best suited to patients with SpA with an early disease onset has seldom been studied, but it is of interest, as it applies to a different―that is, younger―target group [
2,
21]. Earlier research in patients with SpA has produced some divergent results concerning satisfaction with patient education, where women have expressed more needs for education than men [
32‐
34]. Recent results on patients with SpA have shown that diagnosis, prognosis, and management are the most important educational topics requested by patients, and in qualitative analysis medication, pain, fatigue, activity, work, and prognosis were raised as important issues [
35].
The aim of the present study was twofold. First, to identify the needs and priorities in patient education in patients with spondyloarthritis, based on gender, disease duration, and self-reported disease activity. Second, to investigate patients’ experiences and preferences when receiving patient education.
Discussion and conclusion
Patient education is an important and recommended non-pharmacological treatment for patients with different chronic diseases, including SpA [
22,
23]. Earlier studies in the field have concentrated on patients with rheumatoid arthritis, and not much research has been done in patients with SpA [
11,
31]. The results from the present study showed that almost half of the patients with SpA considered that they had a need for education, and the areas concerning self-help, feelings, and the disease process were those that were most requested. The same areas were also highlighted through the categories that emerged from the qualitative data; the importance of receiving patient education that was guiding, reliable, and available in order to manage the consequences of the disease better. Individualized and tailored education was requested but also newer methods such as Skype, video, and chat were mentioned as possible resources, even with regard to getting trustworthy feedback–for example, during exercise. However, online sources were also mentioned as being less reliable resources. Increased collaboration between healthcare professionals, patient associations, and pharmaceutical companies could verify that the information is reliable and constantly updated.
Proportion of patients with educational needs
In the present study, we found that nearly half of the patients with SpA reported having educational needs. In a recent study of patients with different inflammatory diseases (rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis), 60% expressed the need for more information about medication, diagnosis, and exercising [
34], which was a larger proportion than in the findings of the present study. One explanation for this could be the association between educational needs and disease activity [
32]. Giacomelli et al., used a convenience sample of patients with high scores in self-reported disease activity [
34] while the present study randomly selected patients from a rheumatology clinic register, without confirmed current health care needs. However, in the present study the proportion of patients with educational needs were significantly higher in the group of patients with BASDAI scores of more than 4.
Domains of importance
The three most important domains mentioned by the patients included in the questionnaire survey were self-help, feelings, and the disease process. These issues were also mentioned as being of importance in the interviews, and fell into the “guiding education” category in the qualitative analysis. Radford et al. found educational needs about symptoms and support related to emotional needs as being of importance when tailoring patient education [
7]. Other studies have identified similar domains of importance, where educational needs concerning diagnosis, prognosis, medication, exercise, and activities were reported [
34,
35]. In a study by Kjeken et al., the patients most often asked for information concerning the disease (diagnosis, medications), exercise, and activities, irrespective of the inflammatory diagnosis [
26]. Thus, it does not appear to matter which underlying rheumatic disease, or even chronic disease, the patient has when it comes to patient education, while how to tailor the education to the individual patient is probably more important [
26,
47].
Differences between groups
Cooksey et al. found that women had more educational needs than men in the domains self-help, pain, and movement, which is in accordance with the results of the present study. Women have also by others been reported to gather more health information than men [
33]. Also in other self-reported health variables, women and men have been found to have a different way of reporting health [
48] which may have had an impact on the present results. Also patients with BASDAI scores above 4, had higher needs in several domains, also reported by others [
32,
34]. However, based on the results of this study, disease duration does not appear to affect the demand for patient education.
New sources of communication
Websites, online audio/video, and e-learning have already been suggested to be useful sources of information [
2,
35]. Some studies have shown differences between the genders concerning use of the internet, but through the years such differences appear to have diminished [
49]. Our qualitative data strengthen the fact that patients with SpA were also interested in new resources (Skype, video, chat forums, FaceTime, and e-mail), but some also told of less good experiences with online information and blogs. The health profession must form and maintain good internet forums with reliable information. The use of e-health and internet as a reliable resource to deliver patient education is something to work on. In order to better meet the patients’ needs it could be essential for the healthcare professionals to closely collaborate with other stakeholders in delivering reliable information. For example, healthcare professionals, patients associations, and possibly pharmaceutical companies could merge together to verify that the information given at different internet forums is relevant and reliable.
Limitations and methodological considerations
One limitation of the present study is that the results may not be applicable to the youngest patients with SpA. Even though the inclusion criteria included a wide range of disease duration, the tables show that there was a high mean duration of disease and high mean age in both the quantitative and the qualitative parts. Another limitation of the study was the low response rate which may have introduced response bias, thus affecting the generalizability. The ENAT questionnaire has also limitations due to the seven fixed domains. These domains do not cover all information of importance in patients with SpA. In order to compensate for this limitation, the interview questions were held open and thus, the mixed-method design creates greater credibility of the patients’ priorities in the current study.
In the qualitative part, aspects of credibility, dependability, confirmability, and transferability were taken into consideration [
50]. Although relatively few interviews were conducted, a sufficient number of meaningful units were revealed, and the sample size is considered to be less important in qualitative research. Even so, the interviews only reflect the experiences of a small patient sample, and the results can be used mainly to suggest important topics for future work. The dependability of the data was strengthened by using the same opening questions and the same interviewer (EH). The interviews were held in an undisturbed environment by a researcher familiar with the topic. Furthermore, the interviews were repeatedly and systematically read, analysed, and interpreted by two researchers, which strengthened the confirmability and the topic was easy to talk about, which strengthened the transferability [
50].
To gain trustworthiness, all researchers were working with the different parts of the study. All the researchers had a long experience of the patient group, of epidemiological research, and of qualitative research. They had different professional experience, which widened the standpoint of the analyses and conclusions.
Conclusion
There is a demand for patient education, where almost half of the patients with SpA expressed a need for more. Self-help, feelings, and diseases process were raised as being important domains of patient education. The qualitative data further supported the existence of these domains and highlighted the importance of obtaining a patient education that was guiding, reliable, and available, to make life easier when living with the disease. These needs fit in well with the reports of needs in other patient groups with different chronic diseases.
Practical implications
Healthcare professionals must consider the importance of presenting individually tailored and varied formats of patient education based on patients’ experiences and preferences, and making better use of other possible sources. Meetings with various specialists, opportunities to have contact with other patients, and newer ways of communicating education appear to be good ways of helping the patients to better manage their SpA. In each unique meeting with a patient with a chronic inflammatory disease, a professional with knowledge of the individual’s needs is required. The present study indicates that there is more than one solution regarding the content and structure of patient education for patients with chronic inflammatory diseases. The use of a simple screening tool, such as the ENAT, in clinical practice to obtain a basic knowledge of the patients’ needs may be a starting point for further exchange of knowledge.
In future research, the short-term and long-term effects of individualized and tailored patient education, based on these needs, should be evaluated in terms of both health outcomes and cost-effectiveness in this group of patients.