Perspectives of patients with type 1 or insulin-treated type 2 diabetes on self-monitoring of blood glucose: a qualitative study

Patients

Patients with type 1 diabetes were recruited from the outpatient clinic of a general hospital in the Netherlands, and patients with type 2 diabetes from general practices in the same region (Isala Clinics Zwolle, the Netherlands). Eligibility criteria were: a diagnosis of type 1 or type 2 diabetes, treated with insulin, SMBG carried out for a minimum of one year, Dutch speaking, and over the age of 18.

The patients were informed that their anonymity was guaranteed and that all information gathered would be confidential by disassociating the patient name from the data. Each patient received a research number, and the data were saved under this number. Approval for the study was obtained from the Medical Research Ethics Committee of the Isala Clinics in Zwolle (NL 27433.075.09). All patients provided written informed consent.

Data-collection

Data were collected through the conduction of one-time open in depth interviews, guided by a topic list. This topic list was compiled based on literature, including the General Self-management Model which is based on the Chronic Care Model [25, 26] as well as topics gathered during two focus group meetings. These meetings were held with patients who attended the same outpatient diabetes clinic in a hospital setting. The first group consisted of eight patients with type 1 diabetes: five men and three women with a median age of 52 years (Interquartile range (IR):37-61), and a median diabetes duration of 25 years (IR:5-39). The second group consisted of eight patients with type 2 diabetes: four men and four women with a median age of 68 years (IR:48-76), and a median diabetes duration of 10 years (IR:9-16). The focus group interviews were led by the principal researcher (JH) and a psychologist (WSW). These interviews also increased the principal researcher's preparedness to conduct the individual interviews. Focus group patients were not included in the individual interviews.

The following topics were incorporated in the individual interviews: the frequency of SMBG, its goals, the effect on daily life, knowledge, patient skill level, confidence in self-care, living with diabetes, the patient's contribution to treatment, the role of relatives, the role of healthcare providers, as well as any barriers and facilitators for performing SMBG.

The question posed to the patients to initiate the in depth, open interviews was: 'What does it mean to you to perform SMBG?' A non-judgmental atmosphere was strived for with a clear emphasis placed on the fact that the investigator was there to learn from the patients. As the study progressed, the focus of the interviews shifted toward the specific issues which were identified throughout the data analysis. Theoretical sampling continued until no new ideas arose which were of value to the developing theory, and saturation was reached.

The interviews were held either at the patient's home, at the Isala Clinics or at the general practice according to the patient's preference. They were conducted by the principal researcher, an experienced nurse specialized in diabetes (JH). She had had no prior professional contact with the patients.

Data-analysis

Interviews were tape-recorded and transcribed verbatim. MAXqda 2007 was used for the analysis of the interview data. The data-analysis consisted of three phases of coding [22–24]: initial coding by breaking down the data (open coding), reconnecting the broken data into categories (axial coding), and interconnecting the categories into a model that represents the factors related to the patients' perspectives of SMBG (selective coding). The coding and categorising involved constant comparison. The principal researcher coded and categorised the data. Three other researchers individually read the interviews and the coding results, and/or were involved in developing the theory. The researchers had different backgrounds and therefore contributed to alternative perspectives, thereby preventing going native. During meetings, consensus about the coding, categories and the developing theory was achieved. This researcher triangulation procedure served to increase the depth of the analysis and established increased validity. Memos were used in which the ideas were written down about the evolving theory. Validation was enhanced by member check and peer review. Four of the respondents were asked to verify the written summary of their interviews. All four confirmed that the summaries were a fair representation of their perspectives. Provisional conclusions and theoretical insights were discussed with a person from the Dutch Diabetes Association and a diabetes specialized nurse.

Variety in SMBG performance in daily practice

The individual performance of SMBG differed with respect to frequency, timing, the actual measurement, interpretation of the readings, the resulting action taken, and an evaluation of the outcome. The respondents made their own choices regarding the performance, and they had their own reasons and logic for the choices they made. A wide variety in SMBG performances was seen in this study as a result. 15 respondents reported that their frequency of SMBG use was according to the recommendations provided by their health care provider, 3 respondents reported a lower frequency, 3 respondents reported a higher frequency, and 7 respondents reported that they had received no specific recommendations. In addition, a majority of all the respondents reported that their frequency and timing of SMBG varied from day to day.

'I measure my blood sugar every morning. If it's a bit low, around 6 or so, and I know that I don't have a lot planned for the day, then I don't worry about it. If we are going out somewhere, however, then I think about what we are going to do, and I measure it more often, and I will already have an extra slice of bread in the morning. I think ahead. I don't like feeling hypoglycemic. I want to prevent that. Even, if I am just going somewhere by car, I will do an extra measurement. Imagine if I was to get an hypoglycemia. There are already enough people in the ditch.'

Respondents differed in their interpretation of the readings, the subsequent actions taken, and their evaluation of the outcomes of these actions. For example, a high glucose concentration could lead the patient to adjust the insulin dosage, change the food intake, contact the health care provider or to take no action and adopt a wait-and-see policy.

'I had the self monitoring glucose meter, but I didn't do a lot with it. I figured that things were actually going pretty well. I measured my blood sugar about once per month, and if the results were good, then I thought: things are fine. If the results were not good, then I thought: well, what can I do about it? I don't know. I was being followed by both my family doctor and a nurse specialized in diabetes. My weight was good, I didn't have too much belly fat,... so I figured that things were going all right. So I just waited to see what the next month's results would bring.'

The perception of SMBG: a continuum between 'friend' and 'foe'

Some respondents perceived SMBG as a 'friend', giving them confidence, freedom, certainty and peace of mind. It helped them to achieve their personal goals including good glycemic control, autonomy, control of their diabetes, and the ability to lead a normal life.

'I measure my blood sugar to see if it stays somewhere between 5 and 8. And it is the expectation that you check your own levels once a week. That is the agreement. That gives me a good feeling. Some people get very anxious when they have to prick their finger. Not so for me. On the contrary, it gives me a feeling of security.'

In respondents who were no longer familiar with the symptoms of hypo- and hyperglycemia, SMBG was felt to be helpful in prevention and detection. Most respondents, who perceived SMBG in a positive way, reported that it had become a habitual part of their daily lives.

Other respondents perceived SMBG more as a 'foe'. They mentioned many experiences to support this perception. For example, the finger prick can be painful and can lead to callous and hard spots.

'It is not easy to get a drop of blood. I have got hard black marks on his hand. The marks are so conspicuous. I sometimes find that I am confronted by them. When I am 60 or 70 years old I worry that I won't be able to get through the skin at all! And the idea that your fingers will be totally covered with callous...'

Some respondents felt obliged to monitor their glucose levels with SMBG. When they decreased the frequency of SMBG, their glucose regulation worsened, and they had a higher risk of developing an unnoticed hypo- or hyperglycaemia. Furthermore, when the readings were not in accordance with the expectations, especially unexpected 'poor' readings, respondents reported feeling frustrated, anxious, ashamed, or helpless. Some respondents felt that they were never free from their diabetes, always feeling that they had to focus on it. According to these respondents SMBG required a lot of organizational effort and interruption of their regular activities. They felt they had to carry a lot of things with them whenever they would go out in order to be able to measure their glucose concentration.

'Always having to think: did I remember this? Did I remember that? My pockets are always stuffed full of all kinds of things. It's annoying. My purse is like a moving van. I can't ever go out with a small neat purse. Not even when I go to the opera house.'

The respondents' perception of SMBG appeared to be a dynamic factor. For example, adjustments in materials e.g. another kind of finger-pricking device, could make blood glucose testing easier and less painful. This led to a more positive perception. The perception of SMBG as a friend or a foe was related, to some extent, to the frequency of measurement. Respondents who perceived SMBG as a foe, did not always measure their blood glucose concentration less often than those who perceived SMBG as a friend, but they did encounter more difficulties with the measurements.

Personal goals: tension between good glycemic control and quality of life

From the interviews, it became clear that the respondents were not only focused on good glycemic control. They were also focused on maintaining their quality of life.

To achieve the desired glycemic control in order to prevent complications, respondents reported that they had to measure their glucose concentrations frequently in order to make the required adjustments in insulin dose, food intake, and lifestyle. Furthermore, these frequent measurements were necessary for the prevention and detection of hypoglycemia.

'My sugar levels are regularly on the low side. If you are tightly controlled, that's what happens. I am hypoglycemic at least once per day. I would rather live this way with a lower average than be hypoglycemic less often with a higher average. I always think that if your levels are high then the disease keeps nibbling pieces off of your blood vessels. It's like a time bomb which you can't give too many chances. The price is that you are then hypoglycemic with some regularity.'

Respondents described their quality of life in terms of maintaining autonomy, living a normal life, enjoying life, not having to always focus on their diabetes, not being considered a patient, and not wanting to be a burden to their relatives. The influence of quality of life on the frequency of SMBG was less clear than the influence of good glycemic control. It depended on how the respondents individually interpreted quality of life. For example, the concept of living a normal life could mean that the respondent did not want to focus exclusively on the diabetes, which would lead to measuring the blood glucose concentrations less often. However, it could also mean that the respondent would measure the blood glucose more frequently in order to keep the diabetes under control so that he/she would be able to do the activities he/she was used to doing.

Many respondents set their own personal target values with the goal of preventing either a hypoglycemia or a hyperglycemia. Many respondents experienced a hypoglycemic state as being quite distressing. They felt that it kept them from living a normal life and from having their diabetes under control. These respondents were willing to accept higher glucose readings. Other respondents primarily wished to prevent a hyperglycemia to prevent complications. They accepted being hypoglycemic more often.

'When I am hypoglycemic, I feel wretched. I even notice that I can become quite aggressive. I don't really have a problem with high sugar levels, but the low ones are quite bothersome. I really try to avoid attacks of hypoglycemia. I become quite anxious about them. You also don't want to get aggressive. It's very unpleasant and actually you totally don't want that.'

Achieving a good quality of life and satisfactory glycemic control were sometimes in alignment with each other. For example, respondents reported feeling better when their glucose levels were better. However, a majority of the respondents experienced tension between achieving both these goals simultaneously. They tended to deliberately make their own choices regarding the goals of SMBG, and tailored their performance of SMBG to these goals. They were aware of the discrepancies between their decisions and the recommendations they had received from their health care providers.

Personal and contextual factors: barriers or facilitators

Personal and contextual factors may act as barriers or facilitators in the performance of SMBG, depending on the respondents' perspective. Furthermore, these factors could result in goal adjustments and a shift in the perception of SMBG rendering it more positive or negative for the patient.

Differences between patients with type 1 and type 2 diabetes

There were a number of similarities between the respondents with type 1 and type 2 diabetes, but the emphasis on separate factors was sometimes different.

Respondents with type 2 diabetes were less focused on adjusting the insulin dose. They were more focused on adjusting food intake and their lifestyle, including exercise. Usually, they only changed their insulin dose in consultation with the health care provider. They were more sensitive to the advice of their health care providers, and they were more attentive in general. Furthermore, their glucose monitoring showed more variation in both timing and frequency. They were more likely to report that they wanted to enjoy their lives without having to continually focus on their diabetes. Respondents with type 1 diabetes performed SMBG with greater regularity and an increased frequency when compared to the patients with type 2 diabetes. The diabetes was also more of an integral part of their lives.

Respondents with type 2 diabetes experienced more complications associated with their diabetes, although this did not seem to have a great effect on the frequency with which they monitored their blood glucose. They also experienced more frustration, not understanding unexpected readings when they monitored their blood glucose. Respondents with type 1 diabetes seemed to be more resigned to their glycemic control. Finally, respondents with type 1 diabetes reported more often that they were no longer aware of hypo- and hyperglycemic symptoms. As result, they felt more dependent on SMBG for feedback about the status of their diabetes.

SMBG from the patients' perspective

This study investigated the patients' perspective of SMBG. The outcomes of our study show that there is a wide variety in the performance of SMBG, as a result of a complexity of factors. These factors include the patients' perception, his/her goals, and personal and contextual factors. Patients did not always perceive SMBG as a positive tool, which would enable them to achieve good glycemic control. Patients mentioned many experiences which support a negative perception of SMBG, which made it more difficult to perform SMBG. They also felt that health care providers were predominantly focused on good glycemic control. The patients experienced the tension between achieving good glycemic control and quality of life. As a result, the patients tailored the performance of SMBG to their perceptions and personal goals. Personal and contextual factors were identified as being either barriers or facilitators to SMBG depending on the patients' perspective. Most of these factors proved to be dynamic, as they were apt to change over time, sometimes as the result of an intervention by the health care provider. We developed an SMBG model which gives a representation of all the identified influencing factors and their interrelations.

The SMBG model is a specialized version of the General Self-management Model, which gives a representation of the factors, which must be considered when discussing self-management [25]. The SMBG model gives additional information and more practical content to the factors. Furthermore, the factors are arranged in a different way. For example, in the general model, the interaction between the patient and the health care provider plays a central role. In the SMBG model, this relationship is only one of the contextual factors which influences the patients' perspective.

Factors identified in our study such as pain, frustration, depression, knowledge level, treatment complexity, social support, and contact with the health care provider have also been reported in previous studies, including the recent study of Fisher et al. [8, 10, 12–21, 27, 28]. Fisher has investigated the knowledge and behavioural skills in more detail [15]. He concluded that more research is necessary to understand the factors, especially among patients with type 2 diabetes. Our study does offer a broad perspective and more insight into the influencing factors and the relationship between them among patients with type 1 and insulin-treated patients with type 2 diabetes. For example, we show that whereas patients with depression tend to tailor their self-monitoring goals to their life situation, the frequency of SMBG did not always change. In our study, the patients' perception of SMBG is described as a separate factor, and is presented as occurring on a continuum from positive to negative. We investigated the deliberate choices made by patients regarding the goals and performances of SMBG, and looked at the logic which governed their decisions.

In other studies, factors have been reported as being either barriers or facilitators to the performance of SMBG. Our study revealed that there are additional nuances which must be considered. Personal and contextual factors had either a positive or a negative effect, depending on the patients' perspective.

SMBG: small effort, great pleasure?

SMBG is not only positively presented in professional guidelines [6, 7, 29, 30]. Manufacturers also present SMBG as a tool with which diabetes may be controlled, thereby allowing patients to live a normal life. In their advertisements, the readings on the glucose meters usually give values of approximately 5.8 mmol/l while people in the commercial are smiling, looking relaxed and are enjoying life. The meters appear user friendly, the results are almost instantaneous, and apparently almost anybody can use them. Our findings agree with those reported in other studies, including one study in children with diabetes, that SMBG in daily practice is not just a small effort, and it does not always guarantee the pleasure seen in the commercials [13, 31]. From the patients' perspective, SMBG is more complex, and the diabetes is often considered difficult to manage. These overly positive representations do not do justice to the visible and invisible work that patients with diabetes have to do nor do they acknowledge the unexpected and sometimes negative readings with which the patients are sometimes confronted despite their efforts. Patients with diabetes need recognition for these efforts and recognition for the impact that SMBG has on their daily lives.

Contact with the health care provider: duel or duet?

Increasingly, in health care, persons with a chronic disease are given a more central role in their treatment. The patient is responsible for the way in which he/she deals with the disease process. He/she is co-director of his/her own care plan, and is expected to be actively involved. This includes being able to discuss his/her own interests and needs and organizing his/her own care. With an individual care plan, mutually agreed goals and a treatment plan should be outlined with shared responsibilities. This approach should result in improved health care outcomes and lower costs [8, 29–34].

However, in our study, as well as in Dedding's study, a discrepancy in perspectives was found between the patients and the health care providers [31]. According to the respondents, health care providers sometimes set unachievable goals, and persisted in trying to motivate them to attain these goals. While many patients accepted that better glucose concentrations were not feasible for them. Furthermore, the advice did not always concur with the patients' needs. As a result, patients ended up making their own choices regarding blood glucose monitoring. Patients tend not to discuss the poor support or the dissatisfying aspects of their treatment as they are afraid that it would negatively influence either the atmosphere or the treatment itself. Health care providers need to be aware of this so that they can take into account the patients' need to preserve the provider-patient relationship [31, 35].

Differences between patients with type 1 and type 2 diabetes

Vincze et al. reported that patients with type 1 diabetes are more adherent to SMBG than patients with type 2 diabetes. Patients with type 2 diabetes may be less convinced that regularly testing blood glucose levels would lead to positive outcomes [10]. Our study shows that patients with type 1 diabetes were not specifically more adherent to blood glucose monitoring, but they did seem more resigned to their situation, and were more likely to view SMBG as an integral part of their lives. Additionally, more factors were identified which influenced the patients' perspectives of SMBG. For example, patients with type 2 diabetes experienced more frustration when they obtained unexpected results.

Implications for daily practice

In daily practice, health care providers also have to find a balance between achieving good glycemic control and quality of life. Glycemic control is recommended in the guidelines, it helps prevent long term complications, and is an important indicator for the quality of health care. The patient's quality of life is equally as important. The challenge for the health care provider is to set, in discussion with the patient, glycemic goals which are as strict as possible while maximizing the patient's quality of life. It is not a matter of only listening to the patient's perspective, including his/her goals and needs, but it is a starting point.

The SMBG model can help professionals and patients to understand and discuss each other's perspectives in order to be able to set mutually agreed upon, realistic, and achievable goals. Furthermore, it is important that professionals discuss both the positive and the potentially negative aspects of SMBG from the very start including how to deal with SMBG on a daily basis. This will serve to enhance the patient's feelings of personal control and help to cope with the inevitable disappointments, thereby enhancing positive perceptions of SMBG [16, 21, 36–38]. The performances can also be individually tailored to the patient. This will allow an optimization of SMBG use and will prevent both unnecessary measurements and costs. After all, there is no evidence supporting a specific frequency of SMBG, which has led to a variety of recommendations in the literature [6, 29, 30]. SMBG is not a goal in and of itself, but a tool which should be used to achieve optimal glycemic control in an effort to prevent long term complications [21]. Education and training will likely be necessary before the health care providers can optimize their use of this approach and attitude [8].

Regular follow up and evaluation is important as most of the factors affecting the SMBG model are dynamic.

Finally, a new study is started to develop and validate a clinical measurement tool of patients' perspective of SMBG.

Strengths and limitations of the study

Our patient population consisted of native Dutch patients, therefore the results can not be extrapolated to patients of different ethnicities. Although we followed the principles of purposeful and theoretical sampling, the study participants were asked to participate by their own health care provider which may have led to a selection bias. On the other hand, we were able to select a widely diverse sample. The maximum variation of relevant characteristics made it possible to make full use of comparative analysis theory. Our study not only confirms what has been reported in previous studies, but provides a deeper insight into the perspectives of insulin treated patients with diabetes.