Trying to stick to diabetes regimens for six weeks gave members of a paediatric diabetes team insight into why patients find adherence to treatment difficult
In this article…
- Consequences of poor adherence to diabetes treatment regimens
- Practical difficulties of adhering to treatment
- How to gain insight into patients’ experiences of living with long-term conditions
Kelly Rowe, is a specialist nurse for children and young people with diabetes; Ruth Weatherall, is a senior clinical specialist dietician - paediatrics, both at The James Cook University Hospital, Middlesbrough, South Tees Hospitals Foundation Trust.
Rowe K, Weatherall R (2011) P Why do patients fail to follow long-term treatment? Nursing Times; 107; 13, early online publication.
To enhance their understanding of issues around adherence to treatment nine health professionals adhered to a randomly selected six-week treatment regimen suitable for patients with type 1 diabetes. These regimens are designed to promote optimal diabetes control and promote patients’ health and wellbeing. The participants were expected to undertake a number of invasive tasks including blood glucose monitoring and administration of placebo injections.
The extent to which the team felt able to manage their care was measured using self-reported questionnaires and reflection documented throughout the trial.
The trial forced the team to question their expectations of children and young people with diabetes, and their parents. It gave them an interesting insight into factors that influence adherence to treatment.
Keywords: Diabetes, Adherence, Long-term conditions
- This article has been double-blind peer reviewed
5 key points
1. Almost 23,000 children and young people in England have diabetes
2. Only one in seven to one in five children (depending on age group) are meeting recommended targets for diabetes management
3. Adherence rates are typically higher among patients with acute conditions than those with long-term conditions
4. Poor glycaemic control significantly increases the risk of diabetes-related complications
5. The inability to carry out all the tasks required in the everyday management of diabetes could be a factor in poor glycaemic control
Caring for young people with long-term conditions like diabetes requires knowledge, understanding and specialist skills to support them as they learn to manage their condition and deal with its effects on their lives. Effective communication skills and the ability to empathise are crucial.
Problems with adherence to treatment are well documented within diabetes care (Hanas, 2007, Department of Health, 2007). Poor adherence has been linked to factors such as duration of disease and lack of support (Kyngas, 2000), control issues and weight management (Hanas, 2007). Adherence rates are typically higher among patients with acute conditions than in those with long-term conditions. Persistence among patients with long-term conditions is disappointingly low, dropping most dramatically after the first six months of therapy (Osterberg and Blasche, 2005).
Nine members of a multidisciplinary paediatric diabetes team agreed to take part in a six-week trial to test their ability to adhere to regimens like those prescribed to their patients with diabetes. The trial involved complying with individual treatment regimens, each designed to promote optimal diabetes control and promote health and wellbeing.
The participants were randomly assigned to a specific regimen (Table 1). These were selected based on the number of people participating in the trial and the number of different regimens in clinical use. Three participants were assigned to multiple daily injections (MDI) as this is prescribed to the majority of the team’s patient caseload.
In addition to the tasks outlined in Table 1, participants were given random scenarios to deal with, such as treating unexpected hypoglycaemia, coping with an illness and extra monitoring associated with consumption of alcohol.
The extent to which they felt able to manage their care was measured using self-reported questionnaires at the beginning and end of the trial and in reflection documents throughout the six weeks.
Thoughts and feelings before the trial
Participants reported feeling confident and excited before starting the trial, but also worried about the magnitude of the task and said they felt daunted, anxious and apprehensive. They anticipated difficulties around lifestyle commitments, remembering to do tasks, having to do things in public and to explain to other people. However participants believed they would overcome these difficulties by seeking support from family, friends, patients and colleagues and putting in place some practical solutions, such as asking others to remind them, using alarms on mobile phones and by trying to be organised.
Adherence during the trial
Tasks that could be considered to be “essential” were adhered to better than others, ,although even administration of placebo injections was only carried out an average of 90% of the times required (Table 2).
Adherence was consistent in weeks 1 and 2 at 84% and 83% respectively. During week 3, it improved to 90%, and then dropped in weeks 4 and 5 to 86% and 85% respectively. It then significantly deteriorated in week 6 to 65% (Fig 2).
Reflections during the trial
Throughout the trial participants completed “thought bubbles” to illustrate how they were feeling. Reflections such as “constantly on my mind” and “do I have to do all this on holiday?” gave an insight into the burden of living with diabetes.
A number of reflections such as “Injections do hurt”, “The finger pricks do hurt - am I doing something wrong?” and “My morning injection hurt, I am nervous about my teatime injection”, give a much-needed insight into the extent to which pain associated with injections can understandably influence adherence. One unexpected insight that emerged was how invasive it felt keeping a food diary. Comments on this part of the task included “Will others judge me on my diet?”, “I’m embarrassed for people to know what I eat and when I eat” and “Tempted to make it up”.
The subject of food gave rise to numerous reflections such as: “Feel hungry all the time”, “Sorry but I have to eat chocolate - not the best snack!”, “Still having problems eating supper”, “Carbohydrate counting is easier said than done” and “My carbohydrate counting has become a bit random”.
Although there were a small number of positive reflections throughout the trial, such as “Doing things in public is easier than I thought” and “The boys are good at reminding me to do my sugars and injections”, the vast majority were negative. However, it is the negative comments that provide the greatest insight into our patients’ lives, such as: “It all takes so long”, “Can’t be bothered explaining about diabetes again”, “Only a week to go”, “Being ill was a nightmare” and “This is all a chore”. The value of completing this trial can be captured in one participant’s comment: “Worrying about the amount I’m learning - all relating to how difficult this is for our patients!”
Reflections after the trial
After completing the trial participants documented their thoughts and feelings. These included: “relieved”, “disappointed in self” and “greater insight”. It was clear they felt the trial had a significant impact on their quality of life and their relationships with family and friends.
They reported that the most difficult aspects of the trial were maintaining blood glucose diaries and food diaries, remembering to do tasks and maintaining motivation. Further data pertaining to participants’ reflections after the trial have been discussed at length within the team (Box 1).
- Injections sometimes do hurt
- Carbohydrate counting can be difficult to learn
- How easy it is to forget things
- A realisation of how much we ask patients to do
- Gaining insight, practical skills and knowledge
We believe these reflections will have the most significant impact on professional practice when working with, and considering the quality of life of, children and young people living with diabetes. Participants have said that as a direct result of their experiences they will be more realistic in their expectations of patients and families. The experience has re-emphasised the need for open, honest and meaningful consultations, and different approaches to patient education have been suggested.
There were contrasting opinions about the use of different insulin regimens. One participant using a pump during the trial found that wearing it was a constant reminder and would have preferred injections. However, the second participant who wore a pump felt it was better than lots of injections. Further comments from this participant were:
“The pump doesn’t get in the way.”
“I have the freedom to eat whenever.”
“I would recommend the pump as easy to use.”
“The pump can be worn in many places.”
Opinions expressed about twice-daily and three-times daily injection regimens included:
“If I’m testing at lunchtime I might as well be injecting.”
“They can be ‘restrictive’ or ‘impossible’.”
“Not having to do a lunchtime injection is a bonus.”
“Uncertain how I could manage a lunchtime injection.”
The trial did not have enough participants to enable meaningful statistical analysis. However, tables and graphs have been included to illustrate our findings. Eight participants completed the trial; one did not complete it due to personal reasons, while the documentation describing the adherence of one participant was missing.
The link between poor diabetes control and non-adherence to therapy is well documented (NICE, 2009). Interventions designed to improve adherence to medical regimens have looked at improving self-efficacy or patients’ level of confidence about their ability to manage their condition (Sunita et al, 2003).
Within this study all participants were professional, motivated adults experienced in their field. They had excellent knowledge of diabetes and its management and possessed the practical skills required to carry out the necessary tasks to control the condition. Based on the theory that self-efficacy and confidence improve adherence it would not be unreasonable for the participants to expect to achieve close to 100% compliance. However, this expectation appeared to put the team members under pressure and we believe this was reflected in the level of anxiety and apprehension they expressed before the trial.
All participants knew in advance about their “diagnosis” and so were able to plan and prepare for it. We believe this preparation was reflected in the excitement and confidence felt by some before the task. However, most children and young people who develop type1 diabetes have little or no warning of their diagnosis.
It is well known that adherence rates among patients with long-term conditions is disappointingly low, dropping most dramatically after the first six months of therapy (Osterberg and Blasche, 2005). The team expected to mimic this finding within their six-week trial, but we anticipated a rise in adherence was towards the end in an attempt to improve their individual scores. However, this was not the case; the trial started off poorly with an improvement being seen in week 3. This may have been because participants had reflected on their progress and tried to improve.
The number of participants meant the results were greatly influenced by the adherence of one or two. For example, during one week a participant was ill and felt unable to perform the tasks. During another, a participant was attending a course and felt the burden of the task would have interfered with this. One participant dropped out of the trial altogether and another’s adherence was influenced by personal circumstances. The large deterioration in week 6 was skewed by two participants barely doing anything at all. Of course, people with diabetes cannot make such choices, but will still experience life events such as bereavement, exams or family disharmony, which can clearly influence coping mechanisms. Equally, seemingly less significant situations, such as arguing with a friend or not being allowed to go to a party can be highly important to children and young people at that time. This gave the team much greater insight into how life events can take a higher priority than diabetes management.
Taking into account our patients’ and their families’ circumstances, the importance of regular communication cannot be under-estimated. It is imperative that our patients understand that they are in a position to negotiate their individual treatment plans. The team must become more proactive in encouraging this type of negotiation.
Although life events can affect diabetes management it was evident throughout the trial that at times a lack of motivation was the key factor in poor adherence. The team perhaps found it difficult to maintain motivation as there were no acute or long-term health consequences. However, the personal health cost of poor diabetes management, this is often not enough to maintain patients’ motivation.
Participants found diabetes management more difficult on non-routine days such as weekends, days off and shift working. This equates well to our patients’ experiences during school holidays. There is evidence that adolescents are in worse glycaemic control during the summer months when they have less consistent daily routines (Boland et al, 1999). In our experience, even those who maintain good glycaemic control through carbohydrate counting and using intensive insulin regimens still struggle during non-routine periods, and consultations during school holidays can prove unproductive.
Further findings from the trial were surprising. As health professional we encourage our patients to be open and honest with peers and not to feel embarrassed about performing necessary tasks in public. Participants - including those who were not concerned before the trial - recorded struggling with this. On reflection this may have been because they did not actually have diabetes. Explaining the trial appeared to make them feel apprehensive, perhaps because the explanation was not straightforward.
For the purpose of the trial insulin regimens were randomly allocated. The results showed participants’ differing views relating to the same insulin regimen. If the trial were to be repeated it would be interesting to see if the results would differ if preferred regimens were chosen. One participant reflected that she would have preferred injections to pump therapy, believing her adherence would have been better. This raises the issue of the specialist team imposing what they think is the best regimen for individual patients without assessing their individual circumstances and wishes.
Each child and family should be evaluated before initiating therapy to determine their current lifestyle and to choose the most appropriate intervention. Such assessments should be reviewed at each contact (Leilani et al, 2007). The team needs to ensure patients receive enough information and education to make informed decisions about their care, even if the final decision is not what professionals would recommend.
The team gained a greater insight into the negative effect other family members can have on adherence. The demands of other children and chaotic times can all have a detrimental effect as diabetes management is not always a priority for every member of the family all the time. Several participants experienced a lack of support. Families were reported to be embarrassed by blood glucose testing and injecting in public and strikingly it was suggested to one participant: “Why don’t you just make it up”.
At the end of the trial participants reported feeling disappointed in themselves; this is reflective of their feelings of apprehension before it began.
Although before the trial participants suggested they would use mobile phones to remind themselves to do their tasks, they concluded that despite this, one of the most difficult aspects of the trial was remembering. Forgetfulness has been cited as the most common reason for not taking medication, with others including other priorities, decisions to omit doses, lack of information and emotional factors (Osterberg and Blasche, 2005).
In their reflections all participants reported gaining immeasurable professional and personal benefits from the trial. They said they developed an appreciation of how difficult and time-consuming having diabetes is and how lifestyle can significantly affect management.
Their combined experiences re-emphasised the need to encourage openness in clinic. The trial highlighted how personal and invasive their questions can be perceived. Although their appreciation and understanding increased participants acknowledged that it is still important to maintain professional standards and not allowing their newfound insight into living with diabetes to make them fall into the trap of colluding with patients and their families.
This experience will undoubtedly help the team in caring for children and young people with diabetes, but is
- Diabetes teams should be aware that adolescence can be a period of worsening glycaemic control, which may in part be due to non-adherence to therapy (NICE, 2009).
- Non adherence to therapy needs to be considered in children and young people with type 1 diabetes who have poor glycaemic control or who present with diabetic ketoacidosis, especially if it is recurrent (NICE, 2009).
Boland EA et al (1999) A summer vacation from diabetes: evidence from a clinical trial. Diabetes Educator; 5: 1, 31-40.
Department of Health (2007) Making Every Young Person with Diabetes Matter. Report of the Child and Young Person with Diabetes Working Group. London: DH.
Hanas R (2007) Type 1 Diabetes in Children, Adolescents and Young Adults. London: Class Publishing.
Kyngas H (2000) Compliance of adolescents with diabetes. Journal of Paediatric Nursing; 15:4, 263.
Leilani G et al (2007) Child Routines and Youths’ Adherence to Treatment for Type 1 Diabetes. Journal of Pediatric Psychology; 32: 4, 437-447.
National Institute of Clinical Excellence (2009) Type 1 Diabetes Diagnosis and Management of Type 1 Diabetes in Children and Young People. Clinical Guideline. London: RCOG Press.
Osterberg L, Blasche T (2005) Drug therapy: adherence to medication. The New England Journal of Medicine; 353: 5, 487-497
Sunita M et al (2003) A follow-up study of adherence and glycaemic control among Hong Kong youths with diabetes. Journal of Pediatric Psychology; 28: 1, 67-79.