In today’s healthcare system, patients are expected to play an active role and take responsibility for their own health [
The constant need to make health decisions is evident for patients with the chronic disease osteoporosis [
In the encounter between patients and physicians, decision-making is described as an iterative process including three steps: (1) information exchange, (2) deliberation about options, and (3) deciding on treatment to implement [
Research on patients with osteoporosis and decision support has focused on the development and effect of decision aids [
The majority of research on decision-making has focused on the types and effect of decision support in the one-on-one encounter between patients and physicians in the context of acute disease [
To understand decision-making in the context of GE, we conducted an ethnographic field study [
The fieldwork took place from August 2011 to April 2013 at the endocrinology outpatient clinic of Aarhus University Hospital, Denmark, where structured multifaceted osteoporosis GE has been available since 2003. The clinic offers two different GE programmes: one for patients without vertebral fractures and one for patients with vertebral fractures. Figure
Multidisciplinary osteoporosis group educational programmes: sessions, lessons, and teachers.
Patients attending GE are referred either from the outpatient clinic or by the general practitioner and must be diagnosed with osteoporosis to attend GE. Patients unable to participate in physical exercise or suffering from psychiatric diseases or cognitive disturbances are excluded from attending GE.
Patients from three classes for patients with vertebral fractures (one class for men and two classes for women) and two classes for patients without vertebral fractures (only women) were included, as the selection of classes was intended to represent variation in relation to gender and fracture status. In all, 17 (14 women and three men) of the 26 patients (22 women and four men) accepted to participate in the study. The remaining nine patients who declined participation were four patients with vertebral fractures (three women and one man) and five patients without vertebral fractures; these nine patients had a mean age of 71 years (53 : 85).
The study followed the principles of the Helsinki Declaration [
Participant observation was carried out during GE (approximately 82 hours). This meant that the researcher interacted with the patients and healthcare professionals and constantly tried to be receptive to the experience of the patients studied, the activities, and events [
The interviews were carried out just before or during the first week after the start of GE and followed a guide with four themes: (1) patient’s everyday life, (2) patient’s medical history of osteoporosis, (3) patient’s knowledge and understanding of osteoporosis, and (4) patient’s expectations of GE. The interviews took place in the patients’ homes or in the hospital and were audiotaped.
Data analysis was inductively performed concurrently with data collection and included memo-writing, synthesising, theorizing, and recontextualizing [
The patients described their expectations as hoping to “learn something” and “to have the opportunity to get answers to specific questions.” They believed they could make improvements and assumed that attending GE would provide them with clear recommendations for a healthy lifestyle with osteoporosis. They explained that they had never talked thoroughly about osteoporosis with anyone and that they appreciated the opportunity to do so at the GE. Nevertheless, all the patients had reached some kind of understanding about living with osteoporosis depending on how long they had had the disease, the amount of contact they had had with other healthcare professionals, whether they had relatives or friends with the disease, and how much information about osteoporosis they had received. Some patients who had been diagnosed for less than a year when they attended GE expressed they had stopped seeking information because they found the information difficult to understand and intimidating. Instead, they had decided to wait for GE. Patients’ demographic and osteoporosis related characteristics are presented in Table
Patients’ demographic and osteoporosis related characteristics at the end of study period.
Patient ID: F, N/class ID | Age (SD) | Gender | Occupation | Lives alone | Educational background | Years with osteoporosis before GE | Calcium tablets ( | Osteoporosis medication |
---|---|---|---|---|---|---|---|---|
F1/c | 88 | Female | Retired | + | Primary school | 16 | | Zoledronic acid |
F2/c | 61 | Female | Incapacity benefit | − | Short extensive education | 5 | 0 | Denosumab |
F3/d | 46 | Male | Job training | − | Vocational school | 1 | 2 | |
F4/d | 71 | Male | Retired | − | Primary school | 0 | 2 | |
F5/d | 57 | Male | Working | + | Vocational school | 0 | 2 | Alendronate |
F6/e | 61 | Female | Incapacity benefit | + | Vocational school | 0 | 2 | Alendronate |
F7/e | 62 | Female | Incapacity benefit | + | Vocational school | 11 | 2 | Zoledronic acid |
F8/e | 61 | Female | Working | − | Bachelor’s degree | 8 | | Alendronate |
| ||||||||
F-Mean | 63.4 (12.1) | |||||||
| ||||||||
N1/a | 57 | Female | Retired | − | Vocational school | 0 | 2 | |
N2/a | 53 | Female | Working | − | Bachelor’s degree | 1 | | Alendronate |
N3/a | 83 | Female | Retired | + | Vocational school | 5 | 2 | None |
N4/a | 57 | Female | Working | + | Bachelor’s degree | 5 | | Alendronate |
N5/a | 69 | Female | Retired | + | Bachelor’s degree | 2 | | None |
N6/a | 56 | Female | Working | − | Bachelor’s degree | 1 | 2 | Denosumab |
N7b | 63 | Female | Retired | − | Bachelor’s degree | 0 | | Alendronate |
N8/b | 56 | Female | Working | − | Bachelor’s degree | 0 | | Alendronate |
N9/b | 69 | Female | Retired | − | Short extensive education | 3 | | Alendronate |
| ||||||||
N-Mean | 62.5 (9.6) |
F: one or more vertebral fractures; N: no vertebral fracture; SD: standard deviation.
During GE, exchange of knowledge consisted of basic medical evidence of osteoporosis provided by the teachers and a high degree of personal experiences from the patients. The educational focus in the dialogue and interaction between and among the patients and teachers was on recommendations to encourage healthy bones and how to implement the recommendations in daily life. We found that recommendations were related to five overall themes: (1) diagnosis and prevention; (2) training and exercise; (3) daily life activities; (4) diet for healthy bones; and (5) medication. The type of recommendation ranged from general principles to specific advice. Box
Talk to your children about heredity Remember to get a new DXA-scan every 2-3 years Be able to understand the result of the DXA-scan Be physically active and exercise for 30 minutes each day Weigh bearing-exercise is important No rotation and forward bending of the back when exercising Stabilise you lower back when you are active Talk with your physical trainer about osteoporosis Avoid bowling, golf and yoga Remember proper footwear Safeguard your back during all activity by avoiding rotation and forward bending of the back Use proper lifting and bearing techniques Do not lift too much (Do not lift more than 5 Try to implement new habits Follow the national diet advice and try to eat a diet for healthy bones Consume Vitamin D 38 mcg/day (1520 IU/day) Consume Calcim 1200 mg/day from food and tablets and distribute the intake throughout the day Be able to calculate your daily calcium and D-vitamin intake from food and tablets Take osteoporosis medicine and make sure you take it correctly Introduce habits to help you to remember to take your medicine, calcium tablet and D-vitamin Talk to your physician if you want to change your medicine and calcium tablets Talk to your physician if you experience side-effects from your medication Take painkillers if you are in
The teachers guided the exchange of knowledge, which fostered a dialogue between teachers and patients as well as among patients. Even though providing information on general osteoporosis knowledge and skills was the foundation of GE, the teachers systematically sought and included the patients’ individual experiences and needs in the class activities. Multidisciplinary ways of practicing dialogue-based teaching increased the extent of the personal information shared by the patients and encouraged the high degree of knowledge exchange between the teacher and the patients as well as among the patients (Box
The nurse asks each patient about medical treatment: (i) What kind of medicine do you take? (ii) How do you take the medicine? (iii) Is it easy to remember? (iv) Do you experience side effects? (v) How do you feel about taking the medicine? All teachers systematically asked about specific individual characteristics, needs and knowledge at the beginning of the session or during the session: (i) Do you engage in exercise and what kind of exercise? (ii) Do you work? (iii) Do you have diseases like diabetes, food allergy or a poor appetite? (iv) Do you know why you have to be able to understand the DXA scan? The dietician and one of the patients outlined what this patient eats during a normal day with focus on calcium. This is followed by calculating the patient’s daily intake of calcium from food and calcium tablets and a dialogue involving all the patients with focus on: (i) How does this correspond with the recommendations? The physician sits next to one of the patients in the classroom in the presence of the other patients. The other patients are not invited to participate in the dialogue, but can listen and talk to each other. The physician has brought the patient’s DXA scan. The physician explains the result of the DXA scan to the patient. The patient and the physician talk about the interpretation of the patient’s DXA scan: (i) What the patient’s bone mineral density (
Patients shared experiences related to managing daily life with osteoporosis with each other and with the teachers. For example, in a lesson with the occupational therapist patients described how they managed shopping for staple goods:
This brought different personal experiences into play, highlighting both decisional conflicts and predispositions. Therefore, exchange of information was bidirectional and contained basic medical knowledge of osteoporosis provided by the teachers as well as personal experiences from the patients.
Patients and teachers expressed their understanding and preferences regarding the recommendations and the implementation of these recommendations in daily life. Patients requested simple and specific answers to questions such as which treatment to choose or whether it was okay to do garden work; however, such answers were seldom offered. Instead, the teachers expressed their opinions and outlined that it was the patients’ prerogative. One nurse stated the following:
When teachers expressed their opinions, they highlighted the importance of relying on evidence-based knowledge. It was therefore difficult for the teachers to provide clear and specific answers either because evidence-based information was unavailable or because the recommendations had to be adjusted to match the patients’ unique circumstances. For example, a patient considered whether shopping was risky due to pain. She asked the physician if she should give up shopping and the physician answered as follows:
The patients based their preferences on personal experiences, for example, tolerance related to medication and pain. Further, they drew on knowledge from various sources like the Internet, the general practitioner, the pharmacy, family, or friends. Thus, patients only to a certain extent used evidence-based knowledge to confirm their preferences.
Even though the teachers objected to making decisions for the patients, they tried to support them by giving advice and directions on potential avenues that patients could choose to pursue. Likewise, other patients also contributed with advice and tips. Hence, the patients were encouraged to talk to their general practitioner about such topics as obtaining a new DXA scan (a dual energy X-ray absorptiometry, or DXA scan, measures the BMD) or changing the dose of calcium intake. With regard to exercise or daily activities, the patients were told to contact their healthcare centre or were informed about organisations that offered osteoporosis-oriented exercises. A physical therapist offered the following explanation:
In a few situations, the teachers offered immediate support to the patients. For example, a dietician asked a patient if she wanted individual counselling. After the session, they went to the consulting room and talked about how the patient could deal with reduced appetite. Another patient decided to change type of osteoporosis medications and asked how to manage this decision. The nurse subsequently arranged an appointment for the patient in the outpatient clinic two weeks later.
The exchange of evidence-based knowledge and personal experiences between teachers and patients led to a mutual deliberation about recommendations and how to lead a lifestyle to ensure bone health. The discussions provided a diversity of answers, opinions, and solutions from which the patients could choose and reaffirmed the patients’ responsibility to decide if, when, and how to implement a decision.
During GE, the patients altered their understanding of an osteoporosis-healthy lifestyle. The GE sessions had an impact on the patients’ decision-making in all of the educational themes (Box
To talk to their children and grandchildren about the importance of getting calcium To encourage their sons and daughters to have a DXA scan To have a new DXA scan earlier than planned To ask about previous and future DXA scan results To become a member of the National Osteoporosis Society To do more exercise To start doing warm water exercise To do balance-training at home To use the training programme at home To do more weight-bearing exercises To try the specific exercises that one can do in bed To avoid forward bending and rotation of the back during exercise To try to take care of their grandchildren without lifting them To get the groceries without lifting too much To try not to lift the dog To try not to lift too much To try not to lift more than 5 kg To avoid forward bending and rotation of the back To use pillows to make good sleeping positions To be aware of lifting and carrying techniques To buy a different mop for washing the floor To buy a shopping trolley To buy a special chair for gardening To get out of bed in a “back friendly” way To check if their diet is sufficient To start drinking more milk To focus on whether their meals contain calcium and vitamin D To calculate their daily intake of calcium from food To reduce their intake of calcium from tablets To take calcium at times when they do not eat calcium-rich food To talk to their physician about reducing their intake of calcium from tablets To increase intake of vitamin D from tablets To check their vitamin D blood level To change medication To check if medication causes side-effects To check if side-effects can be reduced by drinking more water with the tablet To postpone taking medication until the result of the next DXA-scan
Even though GE led to a diversity of answers, it also clarified the opportunities and activities related to specific situations in the patients’ lives. One patient stated the following:
The increased level of understanding had an impact on patients’ decision-making. For example, during GE, the patients learned how to interpret and use the result of a DXA scan. Many of the patients expressed that before attending GE they understood that the DXA scan provided information on disease progression, but they could not read or interpret the results of the scan. Further, they did not know what a
The knowledge exchange about the DXA scans and discussion with the physician helped two patients to decide to postpone starting their medication. They concluded that their risk of fracture was not imminent and believed that the next DXA scan could make them reconsider their decision. A patient without vertebral fractures learned that her BMD had improved. She explained that this knowledge motivated her to make further healthy decisions. Another patient said to the physician that understanding the result of her DXA scan made her realise that improving the
This patient decided to do more weight-bearing exercises and to be more careful when lifting and carrying objects.
Discussing the recommendations not to lift “too much” or “more than five kilograms” encouraged the patients to describe and discuss their life situations. A patient explained that he considered not carrying his eight-kilogram dog up the stairs any longer. Another patient explained that she had decided only to take the amount of washing powder she needed and not carry the whole five-kilogram container when she was doing her laundry.
A patient who was taking one kind of osteoporosis medicine and previously had been offered a bone anabolic osteoporosis treatment explained the following to the nurse:
The personal attention allowed the patient to better understand the size of the needles as well as the benefits and costs of the treatment; this had an impact on his decision, as he decided to start the bone anabolic osteoporosis treatment.
All patients voiced the new decisions they had made and even the patients who had had osteoporosis for many years made new decisions. One patient who had been diagnosed with osteoporosis for three years expressed the following:
By exchanging and sharing evidence-based knowledge and personal experiences, the patients changed their understanding of how to manage osteoporosis in daily life. GE did not provide clear recommendations; instead, GE offered solutions and answers about lifestyles conducive to bone health, considering the circumstances of and relevance to the individual patient.
This study explored multifaceted GE with a particular focus on its impact on patients’ decision-making regarding treatment options and lifestyle changes. We have shown that GE engages patients in decision-making as it allows for exchange of knowledge, both basic disease-specific knowledge from the teachers and personal experiences from the patients. Further, GE allows for sharing perspectives among teachers and patients. Studies have shown that the quality of the decision-making process is defined by the extent to which a person recognizes that a decision needs to be made and subsequently engages in the process [
In our study, patients recently diagnosed with osteoporosis and those who had had the diagnosis for many years participated in the same classes, and both groups improved their understanding of the disease and their attention to treatment and lifestyle, causing them to be more actively engaged in decision-making. This is consistent with previous findings [
Our study provided information about GE content and about which decisions are considered important and possible to implement in patients’ daily life (Box
We showed that arriving at a decision and determining how to implement it relied on the patients. Even though teachers and patients explored the implications of the decisions and shared their preferences, teachers stressed that it was the patients who ultimately had to make the decision. Thus, teachers therefore refrained from participating in the final step of the decision-making process. There are three issues to consider in relation to this. First, in multifaceted GE, patients often interact with healthcare professionals who are not their primary physician. Even though nearly half of the patients in our study were treated in an outpatient clinic and some knew the teaching nurse or physician, the role of the healthcare professional was different than in a one-on-one consultation. In GE, the role of the healthcare professional is described as that of a teacher or facilitator of knowledge and skills [
In our study, patients sought guidance and support concerning decisions as well as implementation. Similar to these findings, a study of patients and professionals in a preventive health program found that patients challenge the effort of healthcare professionals to make patients responsible for their health [
This study builds on a very extensive data collection compared to most previous studies on multifaceted osteoporosis GE [
This study was based on a specific multifaceted GE program and although the programme described here is similar to other multifaceted GE programs [
In this study, we have explored decision-making in the context of multifaceted GE for patients with osteoporosis. During GE, patients changed their understanding of lifestyle conducive to bone health, which had an impact on their decision-making. Patients sought clear recommendations on how to manage a life with osteoporosis and were offered information regarding a variety of ways to follow the recommendations. Teachers supported the patients by providing medical information and listening to patients’ experiences. GE led to many healthy decisions on the part of the patients and to advice and directions on how the patients could implement decisions in the future to ensure bone health. Future research is required to investigate if and how patients use their experience from attending GE and how they implement these decisions in daily life.
An earlier version of this work was presented at “4th Joint Meeting of ECTS and IBMS,” 2015.
All authors declare that they have no conflicts of interest.
The Danish National Osteoporosis Society and Aarhus University Hospital funded this study.