The development of an information booklet for students with type 1 diabetes

Starting university, with its typically unstructured and chaotic lifestyle, is a potentially challenging time for type 1 diabetes management. Research has shown that university students are more likely to involve themselves in risky behaviours, such as taking drugs and alcohol, with negative effects on diabetes control (Plant and Plant, 1992). It is the role of all diabetes health professionals to adapt diabetes management to the lifestyles of their patients. The lifestyle of a student has been described as a “grey area” in diabetes services (Cheyette, 2006).

Attendance at young persons’ diabetic clinics and discussions with young person diabetes teams revealed a lack of realistic information for people with type 1 diabetes starting university. In an effort to resolve this problem, the authors of this article have developed a diabetes booklet entitled “Starting Uni with Diabetes”.

Research methodology
Literature search
The authors conducted a literature search to identify the current information available for university students with diabetes, using the following search terms: “diabetic education”; “patient education”; “educational material”; “patient leaflet”; and combined “student”, “adolescent” and “diabetes”. Their search identified several patient education leaflets concerning adolescent diabetes control. However, there was a paucity of information regarding diabetes management at university.

Designing the booklet
The booklet content was derived from textbook examples from existing patient information leaflets (Barlow and Bishop, 1996; Secker, 1997; Hanas, 2004; Diabetes UK, 2012b), advice from DSNs at the Royal United Hospital, Bath, and suggestions from a sample of university students with type 1 diabetes. The end-result was a booklet containing the following nine sections: “alcohol”; “how do I tell people about my diabetes?”; “sports”; “stress”; “drugs”; “healthy eating”; “sex”; “insulin”; and “sick days”.

The authors used desktop publishing to produce the booklet (Diabetes UK, 2012a; see Figures 1, 2 and 3). Coloured text and bright images aimed to be eye-catching and text was displayed in bullet points or short paragraphs to convey the key points. As the authors considered that the readers would respond more positively to advice from other young people with diabetes, 10 quotes from students were used to communicate pertinent points. The authors aimed to use simple, non-judgemental language and, rather than presenting a list of “dos and don’ts”, endeavoured to give realistic advice, allowing readers to make their own, well-informed decisions.

Evaluating the booklet
An evaluation questionnaire was used to assess the booklet (Streiner and Norman, 1998), consisting of 14 questions regarding personal information to provide characteristics of respondents, including age, sex, university or educational institute, and questions about diabetes management, including the frequency of hypoglycaemic episodes, HbA_1c, perceived glycaemic control (defined as self-assessment of diabetes control ranked on a five-point scale [1=excellent; 2=good; 3=fair; 4=poor; 5=terrible]), history of diabetic ketoacidosis (DKA) and history of hypoglycaemia requiring assistance from others. Seven questions asked for feedback on the booklet. Three of the questions required numerical responses, ranging from 1 to 5 (1=very; 2=quite; 3=fairly; 4=not really; 5=not at all), constituting the quantitative aspect of the study. Four of the questions required free-text responses.

The evaluation questionnaire and booklet were distributed to young people waiting for their appointments at secondary care clinics. Recipients were selected on the basis of the following inclusion criteria: diagnosis of type 1 diabetes, aged 16–25 years and willingness to participate. Young persons’ diabetes clinics at the following locations were visited: the John Radcliffe Hospital, Oxford; the Royal United Hospital, Bath; Southmead Hospital, Bristol; the Great Western Hospital, Swindon; and Bristol University Students’ Health.

Analysis of the evaluation questionnaire
For numerical responses, the authors performed univariate analysis with multiple regression analysis to correct for the following possible confounding factors: sex; age; ethnicity; HbA_1c; frequency of hypoglycaemic episodes; university or college course (arts or sciences); history of a serious hypoglycaemic episode (defined as “requiring assistance from others”); history of DKA; perceived diabetes control; and frequency of blood glucose measurements per day. Qualitative analysis of the answers to the four questions eliciting free-text responses was used to identify areas for booklet improvement.

Findings
No other patient information resources addressing type 1 diabetes management at university were identified by the literature search or through discussions with young people with diabetes. Evaluation questionnaires were completed by 52 students (mean age 19.2 years; 23 male, 25 female; and four students for whom the gender was not recorded). Of all the respondents, 25 were enrolled on university courses, one was at college, three were applying for university and 23 chose not to disclose their educational status. Their characteristics are summarised in Table 1.

All three numerical feedback questions, that is the “usefulness of information”, “sufficiency of information” and “usefulness of information if received in university starting pack”, received a mean score of 1.9 (scoring range: 1=very; 5=not at all). The mean score for “sufficiency of information” was 2.13 for males and 1.64 for females (P=0.03). There was no significant gender difference in “usefulness of information”, for which the mean score in females was 1.88 compared with 1.91 in males (P=0.90). None of the independent variables predicted “usefulness” or “usefulness if received in university starting pack”. However, gender was a significant predictor of “sufficiency of information”, as the females found it less “sufficient” (P=0.005). Responses to free-text questions are summarised in Table 2.

The “alcohol” section was identified as “particularly helpful” by nearly half the participants (49%) and valued in teaching “something not known before” by 16%.  Responders specifically commented on the helpfulness of the information relating to “having breakfast after alcohol” and “alcohol and taking insulin”.

The “drugs” section was highlighted as an area requiring more information by 13% of the participants. For example, one participant said:
“Pretending that drugs like cannabis don’t happen at university is naïve… I think it would be really useful to have more detail on… what the effects are on your blood sugar.”

Eighteen per cent of participants claimed that they had learnt something new from the “stress” section, particularly that stress increases blood glucose levels. Four female participants identified “stress” as a section requiring further information. This corresponds with the findings from the regression analysis in that, overall, the female participants found the booklet information less “sufficient” than the male participants.

The section “how do I tell people about my diabetes?” was assessed as particularly helpful by 15% of the responders, while 5% conversely found it unhelpful.

One participant said:
“… made a big deal out of telling others about your diabetes.”

Other responses of note include:
“Tips from students were personal advice and not forceful.”
“Very useful to have a guide with all advice in. The last thing you want to do when ill with diabetes is to search through loads of flyers to try and find the relevant one.”
“Would have been helpful when I was in first year, not so much now I’m in second year.”
“Would have been useful for friends to have read this.”

Qualitative analysis of the feedback highlighted a number of useful topics that were not included in the booklet, such as travelling and benefits advice (see Box 1).

Discussion
The first version of the patient information booklet for university students with type 1 diabetes generated positive feedback (see Box 1 for the key findings). The analysis of the feedback suggested that the contents of the booklet had a broadly equal appeal across all participants in the study. Gender differences in perceived “sufficiency” of the booklet information were observed with females reporting insufficient information, particularly on the impact of stress on diabetes. The qualitative component of the analysis highlighted several important issues that were not included in the first version of the booklet.

Students found the “alcohol” section useful, which contained details about realistic ways to avoid complications of diabetes and drinking, such as avoiding drinks with a high sugar content and leaving their university door unlocked so that someone could check on them in the morning. The sections that were identified as teaching something new to the participants were that of “drugs”, “sports” and “alcohol”. There were, however, some difference in opinion. The “how do I tell people about my diabetes?” was highlighted by individual students as both particularly helpful and unhelpful. Written responses suggested that too much emphasis was placed on one approach to informing others about their condition, rather than offering a range of options.

One participant would have liked more information on how different illegal drugs affect blood glucose levels. This presents a difficult balance between allowing adolescents to make informed decisions and ensuring that drugs are not promoted. The relatively small number of students participating in the study is a limitation that should be considered. Selection bias is possible as clinic non-attenders were not included, favouring feedback from people already engaged with secondary care. One of the authors distributed the leaflets and questionnaires, creating another potential source of bias. Though participants may have felt obliged to give more positive feedback, the authors aimed to reduce this by asking participants to be “as honest as possible”.

Conclusion
Educational interventions in diabetes have proved to be beneficial in young people. Well-informed individuals take a more active role in diabetes self-management, with more frequent blood glucose measurements, improved blood glucose control and fewer experiences of hypoglycaemic episodes or DKA (Hampson et al, 2001; Thakurdesai et al, 2004; Peyrot et al, 2009). Longer-term goals include improving body weight, blood pressure, HbA_1c and cholesterol, with a view to reducing diabetes complications (Mühlhauser and Berger, 2000; Heisler et al, 2002; Ellis et al, 2004).

As confirmed by the literature search, there is no specific diabetes education material available for young people with diabetes starting university (Funnell et al, 2011). This study has provided the evidence needed to justify the production of a readily available, realistic information booklet for this target group. The findings have highlighted the key issues that DSNs working with young people should be aware of, such as drugs and alcohol, which do not seem to be covered by the current resources in a sufficiently non-judgemental way. Based on the feedback, the authors plan to modify the booklet, with the ultimate aim of making it available to all university students with type 1 diabetes. Although this pilot study focused on students, it is not unreasonable to suggest that all adolescents with diabetes need more realistic advice on the key issues.

Acknowledgements
The authors would like to thank Daniel Ahern, University of Bristol; Debbie Stern, Diabetes Specialist Nurse, North Bristol NHS Trust; Morag Catterall, Diabetes Specialist Nurse, University of Bristol Students’ Health; Anna Carling, Senior Dietician, Royal United Hospital, Bath; Karen Ross, Paediatric Diabetes Specialist Dietician; John Radcliffe Hospital, Oxford; and Sarah Fitzpatrick, Diabetes Specialist Nurse, Swindon Great Western Hospital.