Parents or other caregivers often have a major role in a young person’s diabetes management following diagnosis. The
transition to self-management, usually as a late adolescent/young adult, can be a time when issues with adherence and
worsening glycaemic control arise. Young adults are often dealing with significant changes in lifestyle which can make
it more difficult to prioritise their diabetes care, e.g. leaving home, beginning tertiary education, entering the workforce,
going travelling, experimenting with alcohol or other drugs.3
Brendan [on the transition to self-management after leaving home to go to university] “I didn’t manage my diabetes closely
enough. It’s not that I ignored the fact that I had type 1 diabetes, but I guess I just believed I would get by without
having to pay too much attention to my blood glucose levels and insulin doses. I probably didn’t prioritise my diabetes
high enough. Lack of testing my blood glucose level and therefore correctly managing my insulin doses probably did have
some impact on my wellbeing at the time. I do remember getting sick a few times and having a hard time keeping my diabetes
under control.”
Ruby [on coping with the transition to self-management]: “It’s honestly a bit of a blur. My parents
and I did the best we could with the knowledge we had. There was certainly a lot of trial and error which included multiple
trips to hospital with DKA [diabetic ketoacidosis] as I took control of my diabetes management.”
What can primary care do to support young patients self-managing their diabetes?
Most often, a person with type 1 diabetes will be under the care of a multidisciplinary team, but this depends on their
location, specific health needs and preference. Establish with the patient who their preferred point of contact is, and
what role they would like their general practice team to have in their care. The objective is to ensure that there is
clarity around who takes responsibility for overseeing the patient’s insulin regimen, diabetes-related health issues and
wider health concerns.
Even if a patient is being managed by a diabetes clinic, primary care can still provide valuable support by “knowing
their story”, i.e. knowing their diabetes history and general details about their regimen and acting as an advocate for
their care if required. The general practice should keep a record of annual diabetes reviews (see below) and complete
any necessary assessments or investigations if this has not been done. Assessing mental health and wellbeing is a core
aspect of general practice, along with identifying and managing any health needs related to or impacted by diabetes or
in general, e.g. contraception, pregnancy advice, safer use of alcohol and other drugs, smoking cessation.
Ruby: “For years I didn’t feel confident speaking to my GP/primary care team about my diabetes,
instead calling the secondary care team every time I had a question or issue. I’m grateful that in
the past few years the GP practice I attend now runs a LTC [Long Term Care] clinic with two experienced
diabetes nurses. I feel confident to ask questions and know that if they are unsure they will reach
out to secondary care. I do not expect my general practitioner to know all the details about my diabetes
management, but it’s awesome knowing that I do not have to explain my history every time I see him.”
Brendan: “My last GP was hands off in regards to diabetes by his own admission. I had already developed a good association
with the clinic at the hospital so it wasn’t a problem for me. And I guess a part of it was that seeing my GP came at
a cost whereas the hospital consultations whether that be in person, by phone, or by email were free. My current GP seems
a lot better about diabetes but I’ve kept it the way it has been and prefer to consult the hospital clinic. I guess another
part of it is that the clinic staff specialise in type 1 diabetes more than a GP might, meaning that there is an amount
of trust there.”
Make sure patients have a sick day plan
Ensure that young adults taking over the management of their diabetes understand their “sick day” plan. This should
include:3
- How to adjust their insulin dose to reduce the risk of diabetic ketoacidosis (insulin requirements can increase with
illness, e.g. fever) or severe hypoglycaemia (with gastroenteritis and/or loss of appetite). Insulin treatment should not usually be stopped completely,
however, in some circumstances, e.g. ongoing vomiting, insulin may need to be temporarily withheld for the duration of the illness.
- A reminder to increase monitoring frequency of blood glucose and blood ketone levels,* e.g. every two to four hours,
including during the night
- How to monitor and maintain hydration, including electrolytes
* People with type 1 diabetes are eligible for a fully subsidised dual blood glucose and blood ketone meter. See the
NZF for details: www.nzf.org.nz/nzf_3767
Patient information for people with diabetes on how to manage sick days is available from:
www.healthnavigator.org.nz/health-a-z/d/diabetes-sick-day-plan/
The annual diabetes check
All patients with type 1 diabetes should be reviewed at least annually to assess for micro- and macrovascular complications.
If a patient does not usually attend general practice for their review, check that they are being reviewed in secondary
care.
A diabetes review should include:3, 6
- Body weight
- HbA1c (may be monitored every three to six months); stringent targets, e.g. 48–53 mmol/mol or lower, are
recommended for younger people to minimise the risk of long-term complications if these can be achieved safely,
i.e. without significant hypoglycaemia5, 7
- Blood pressure; an angiotensin converting enzyme (ACE) inhibitor or angiotensin receptor blocker (ARB) is recommended
if blood pressure is persistently > 130/80 mmHg
- Urinary albumin:creatinine ratio (ACR) and estimated glomerular filtration rate (eGFR) calculated from serum creatinine;
an ACE inhibitor or ARB is recommended if ACR is persistently > 3 g/mmol (albuminuria)
- Foot check – palpitation of pedal pulses, testing for peripheral neuropathy and assessment of skin and nail condition
- Assessment of cardiovascular (CVD) risk:* a full CVD risk assessment every year may not be necessary
for younger people, particularly if they have no other risk factors. However, lipid levels
should be monitored annually. A statin is indicated for people with a total cholesterol:
high density lipoprotein cholesterol ratio of ≥ 8, familial hypercholesterolaemia, hypertriglyceridaemia
or a five-year CVD risk score ≥ 15% 6
- Retinal screening (every two years)
*CVD risk assessment is an approximation for people outside of the age 30–74 years range, but may still be clinically
useful. Further information is available here: "What’s new in cardiovascular disease risk assessment and management for primary care clinicians"
For further information on preventing the microvascular complications of diabetes, see:
For further information on statins, see: "Cardiovascular disease risk assessment in primary care: managing lipids"
Achieving and maintaining glycaemic control is a core component of type 1 diabetes management and requires significant
and ongoing commitment by the patient, e.g. planning meals and exercise, monitoring blood glucose levels, and calculating
and administering insulin doses. Young people taking over control of their diabetes management from their parents/caregivers
are faced with the responsibility of how the decisions they make now affect their future health, i.e. their risk of micro-
and macrovascular complications. This can be difficult for young people, especially when for many of their peers this
is a time of spontaneous choices and lack of authority in their life.
Brendan: “I didn’t really look after my diabetes all that well in my early adult life. In my early to mid-thirties I
developed diabetic retinopathy in both of my eyes. I ended up having surgeries in both eyes and I am no longer allowed
to drive by law as my field of vision isn’t wide enough.”
Primary care can provide ongoing education to patients with diabetes about the long-term health benefits of good glycaemic
control. A discussion with the patient may reveal practical or psychological issues that are contributing to difficulties
with adherence to their insulin regimen (see: “Patients require ongoing psychological support”).
The unrelenting burden of self-management and the fear of short-term, e.g. nocturnal hypoglycaemia, and long-term complications,
e.g. retinopathy, nephropathy and cardiovascular disease, can cause many people with type 1 diabetes to experience emotional distress,
sometimes termed “diabetes distress”.8 Diabetes distress is a common and understandable response to living
with and managing a chronic condition, and it can negatively impact diabetes management in some people.8 Diabetes
distress is a risk factor for depression and conversely, depression is a risk factor for diabetes distress.8 The
continual need to plan, monitor and make decisions, combined with unexpected or unsatisfactory outcomes even when doing
everything “as recommended”, can lead to burnout.8 In turn, burnout can lead to further disengagement from
self-management and worsening of diabetes control, which then exacerbates feelings of distress.
Ruby [on supporting young people with diabetes]: “I wish I’d been told about the link between long term conditions and
mental illness and how to build a strong, healthy and resilient mind.”
Brendan: “… I have been through some tough times including a spell of depression. I feel better now, but I still believe
that for me, diabetes can be a cause or catalyst of mental stress and at the same time mental stress can make it harder
to control my diabetes.”
Ruby: “My biggest challenge is random night-time hypos or high blood sugars, which disrupts your sleep, which then affects
your mood and energy, which then goes onto affect how you interact with your loved ones and colleagues. It can sometime
feel like a downward spiral. This can be hard to explain when on the outside you look ‘so healthy’, but you’re exhausted
from being knocked around by high or low blood sugars.”
Routinely asking patients about their challenges in managing their diabetes and how they are coping is important. Clinical
indicators of sub-optimal diabetes control may also suggest that a patient requires more support, e.g. increasing HbA1c levels,
infrequent blood glucose testing, hypoglycaemic episodes. This also provides an opportunity to discuss strategies to help
improve diabetes control, e.g. using an insulin pump if eligible, and prevent further deterioration of mental health and
wellbeing. Be alert for features of depression and initiate management early.
Ruby: “Managing stress and the effect it has on blood sugar levels can be a challenge. I’m definitely
getting better at self-care and managing my stress levels, but the slightest thing can send them
out of whack, e.g. a client meeting, running late... [or] a two-year-old that wakes 70,000 times
in the night!”
For further information on insulin pumps, see: “Understanding the
role of insulin in the management of type 1 diabetes”
Communicating effectively
The way healthcare professionals communicate with people about their diabetes management can have a significant impact
on how the person feels about themselves and their efforts to control their diabetes. Using language
that is non-judgemental, encouraging, understanding and inclusive shows patients with type 1 diabetes that their primary
care team acknowledges the difficulties of diabetes management, and wants to work with them to help find solutions.
Ruby: “For many years I thought I was a ‘bad diabetic’ because of the language doctors would
use. A lot of it comes down to how ‘good’ is measured. For example, a high HbA1c is frowned upon
and the instant focus is on how to fix it. And while I totally understand the health complications
from poorly controlled diabetes, rather the focusing only on the bad, it would be great to know more
about what’s driving the increased blood sugars and celebrate the wins.”
Communication strategies which may be beneficial when engaging with people with type 1 diabetes include:8
- Acknowledging the burden of living with diabetes and the patient’s daily efforts to maintain their health
- Providing reassurance that managing diabetes is a learning process; it often involves a lot of trial and error and
occasional “bad” days, weeks or months, but this is not a failing
- Celebrating successes, e.g. focusing on the fact that their HbA1c has decreased by 10 mmol/mol, rather
than it still being above target
- Exploring ways to reduce negative feelings and improve coping mechanisms, e.g. consider a time when they felt more
positive and what they did differently then, setting achievable goals, referring for additional support
or education, e.g. with a diabetes nurse specialist
- Discussing the risk of complications using motivational language, e.g. complications are not inevitable and even
small steps are beneficial at reducing the risks
Further information for clinicians on supporting the emotional health needs of people with diabetes is available here:
www.diabetes.org.uk/resources-s3/2019-03/0506%20Diabetes%20UK%20Australian%20Handbook_P4_FINAL_1.pdf
Part of learning about diabetes self-management is testing the boundaries of participating in enjoyable activities while
avoiding hyper- and hypoglycaemia.
Brendan: “I believe that as a young adult there is still a need for education and support for those with diabetes. I
think it’s even more important for resources to be available in an organised way for young adults when they face the changes
in their life brought on by study or work and the challenges brought on by the new freedoms available as an adult, such
as alcohol and drugs.”
Discuss how to safely exercise
All people with type 1 diabetes should be encouraged to engage in physical exercise, however, careful monitoring and
planning is required to avoid hypoglycaemia. Check that patients have knowledge of:3
- The type and amount of carbohydrate required for a specific exercise as this will vary with the intensity of the exercise
- How to reduce their insulin dose appropriately before and after exercise
- What to do if things go wrong, e.g. making sure they carry a cell phone and glucose/carbohydrate supplies
Discuss with patients the importance of measuring their blood glucose levels before, during (if appropriate) and after
exercise, or to regularly check their sensor readings if using a continuous glucose monitor.3 If they exercise
in the afternoon or evening they may need to check their blood glucose levels during the night to detect nocturnal hypoglycaemia.3
Brendan: “I’m very physically active as I do competitive cycling as a sport. The training and racing can make management
of my diabetes challenging. But with using a continuous glucose monitor and insulin pump I am able to monitor my blood
glucose levels with a high density of data and I can alter my insulin regimen for different physical activity. It is still
a learning experience and I don’t always get it right. I just make sure I have contingency plans in place to manage any
issues.
For longer spells of physical activity I will reduce the rate of insulin delivery from my pump at least 30 minutes but
preferably one hour before starting. This reduction will last the duration of the activity and for a period of time afterwards.
For some races I will drop my insulin delivery by up to 40%. I also aim to have my blood glucose level slightly higher
than my target level as I don’t want to have a low blood glucose level during a race or training ride. I can always change
my nutrition on the bike to drop my blood glucose level by eating foods or drinking fluids with less carbohydrates or
even stop and take a small amount of insulin. I have developed a knowledge of what type of foods work for me during sports
and how many grams of carbohydrates I need to consume per hour during physical exercise. I can alter my insulin regimen
race by race if need be as some races might cause a spike in adrenalin which can raise my blood glucose level.”
To read more about the challenges of juggling type 1 diabetes with competitive sports, check out Brendan’s blog:
www.typeonecyclist.com
Dietary considerations
Decisions about what to eat and when to eat are often significant for people with type 1 diabetes, however, this can
be difficult to negotiate when learning how to cook for yourself or not having control over meals, e.g. eating out or
at a friend’s place. Many people with type 1 diabetes use carbohydrate counting to optimise their glycaemic control by
matching their insulin requirements to the carbohydrate content of their meals; this allows greater flexibility in terms
of food choice and meal timing. Patients who are having difficulty with their diet may be referred to a dietitian.
Ruby: “I describe myself as being ‘carb conscious’. I am very aware of the effect carbs have on my blood sugar levels,
and try to carb count as often as I can, but end up guessing a lot of the time. If my blood sugars have been stable I’m
more likely to be spontaneous and am happy to eat out with friends/family or at restaurants. However, if my blood sugars
have been all over the place, which affects my energy levels and mood, I’m more likely to take my own food to family dinners
or be selective about the restaurants/cafes we go to, based on carb content and options.”
Brendan: “There is definitely room for spontaneity and flexibility in my diet. I have gone through training with the
diabetes clinic to count carbohydrates in meals whether it be by looking up nutritional information about a meal or food
item or making an estimate. Using an insulin pump allows me to have flexibility in my diet as I can take insulin when
and where I need it for meals or snacks. Foods higher in fat or having a low glycemic index can be challenging as I may
need to take the insulin dose for the food over an extended period of time but this is possible with an insulin pump.
While I do avoid sugary food and drinks I don’t believe that I am all that limited in my dietary choices.”
For further information on carbohydrate counting, see: “Understanding the role of insulin in
the management of type 1 diabetes”
Information on food and nutrition for people with diabetes, including recipes, is available from:
www.diabetes.org.nz/food-and-nutrition
Provide advice on the use of tobacco, alcohol and other drugs
Adolescence and young adulthood are times when people often experiment with risky behaviours, e.g. smoking cigarettes,
using alcohol or other drugs. For young people with type 1 diabetes, the consequences of engaging in these behaviours
can be particularly significant, both in the short and long-term. For example, alcohol increases the risk of delayed or
severe hypoglycaemia by inhibiting gluconeogenesis, while cigarette smoking is a risk factor for developing long-term
microvascular and macrovascular diabetes complications.3
Discuss strategies for avoiding excessive alcohol consumption, and give practical advice about minimising risks if
they are drinking, e.g. checking blood glucose levels, maintaining good hydration with water and eating carbohydrate-based
food before going to sleep to prevent delayed hypoglycaemia.3 Advice about avoiding smoking or smoking cessation
should be given. The use of cannabis or other illicit drugs should be strongly discouraged as this can
significantly impact diabetes management by affecting decision-making and increasing the risk of mistakes with the insulin
regimen, as well as altering eating and sleeping patterns.
A HEADSSS assessment may be useful in adolescent patients to assess their mental health and wellbeing and risk-taking
behaviour. For further information, see: "Addressing mental health and wellbeing in young people"
Discuss sexual health, contraception and pregnancy planning
The importance of using reliable contraception to prevent pregnancy and sexually transmitted infections (STIs) should
be discussed with all sexually active patients; people with type 1 diabetes should be given additional information about
how having diabetes can affect their reproductive and sexual health.
N.B. Patients may be reluctant to initiate discussion about sexual issues, therefore, clinicians should routinely ask
patients questions about their sexual health, including sexual function, in a way that normalises the encounter.
Most contraceptive options are suitable for females with type 1 diabetes
Most contraceptive options are suitable for females with type 1 diabetes, however, combined oral contraceptives are
not recommended for those who have had diabetes for longer than 20 years, those who have microvascular
or macrovascular complications, or additional cardiovascular risk factors; progestogen-only pills can be used safely if an oral formulation is preferred.3
For further information see: “Contraception: which option for
which patient?”
Poor glycaemic control can lead to sexual dysfunction
Long-term exposure to hyperglycaemia can affect blood supply and innervation of the sexual organs. In males this can
lead to erectile dysfunction and in females this can lead to vaginal dryness and reduced sexual stimulation. Pharmacological
treatment may be indicated for erectile dysfunction, while over-the-counter personal lubricants may alleviate vaginal
dryness. As diabetes is not the only cause of sexual dysfunction, other explanations, e.g. depression, should also be
considered if patients report these symptoms.
N.B. People with hyperglycaemia are also more at risk of infections such as candidiasis, balanitis and urinary tract infections, as the high glucose
concentration provides optimal conditions for fungal and bacterial colonisation. A regimen review may be indicated for patients with diabetes who have recurrent infections.
Discuss the importance of pregnancy planning
Poor glycaemic control increases the risk of congenital malformations, miscarriage, stillbirth and neonatal death. Achieving
and maintaining good glycaemic control prior to conception and during pregnancy significantly reduces these risks.3,
9 Women with type 1 diabetes who wish to become pregnant should be referred to a diabetes specialist or obstetrician,
ideally three months before they start trying to conceive, or as soon as a pregnancy is confirmed.9 While
primary care may have limited involvement in the pregnancy care of women with type 1 diabetes, clinicians should be alert
to any wider health issues, including mental health and wellbeing, which may arise during pregnancy or while trying to
become pregnant.
Ruby: “During my first pregnancy I never felt like what I was doing was good enough…it all felt so daunting and overwhelming.
I was trying so hard to keep my blood sugars under control and doing everything I was told, but sometimes diabetes doesn’t
play fair. At 38 weeks I developed pre-eclampsia and my daughter was delivered by emergency c-section under general anesthetic.
It was a pretty traumatic ordeal. With my second baby I knew what to expect and therefore was more confident.”
Preparing for travel
Overseas travel is an important “rite of passage” for many young New Zealanders. With adequate planning and preparation,
people with type 1 diabetes can enjoy these experiences while retaining good diabetes control.
Ruby [on managing the change in routine when travelling]: “I simply adapt. When I am in a different routine or eating
different foods I will make sure I test my blood sugars more often and correct with more insulin if needed. I also always
make sure I have hypo supplies with me. I’ve been caught out too many times without them. I’m slowly learning.”
Check that patients undertaking travel which involves crossing time zones are confident in knowing how to adjust their
insulin regimen. Depending on the patient’s regimen, often only the long-acting insulin needs to be adjusted;
the doses of short-acting insulin are given before meals and snacks as usual. Insulin, blood glucose testing supplies
and carbohydrates should be transported in carry-on luggage and patients may require a letter for border security which
states that they have diabetes and are carrying insulin and a delivery device, i.e. pens, syringe/needles, pump; insulin
and any other medicines should ideally be in the original packaging with the labels from the pharmacy. Patients should
also carry a second letter for a doctor should they require medical attention. This should detail their insulin type,
doses and any other relevant medical information.
Brendan: “I haven’t had any problems [going through customs/security]. I carry a letter
from the diabetes clinic which states that I have type 1 diabetes and need to carry medical equipment as well as a
letter identifying the insulin pump and stating that it can’t go through x-ray machines. I am upfront with airport
security about having diabetes and carrying equipment and medication and have no troubles.”
Patient information for people with diabetes who are planning on travel is available from:
www.diabetes.org.nz/managing-diabetes-travelling-2
Everyone’s journey with a chronic illness is different, and the support they receive from family/whānau, friends and
the healthcare system will vary. Experience defines what we do now and how we react to challenges in the future. If you
have a patient with type 1 diabetes at your practice, make it your mission to know their story. Be a constant source of
knowledge and support, regardless of whether their diabetes care is mainly provided outside of general practice. Young
people taking control of their diabetes themselves may find themselves at a crucial crossroad where finding the mental
strength and discipline to maintain good diabetes control will reduce their risk of complications in later life; they need your help.
For the final word, we reproduce an excerpt from Ruby’s blog, “Mastering diabetes”, where she describes the feeling
of being able to let go, if only for a moment in time:
“…My blood sugars were sitting around 4.5 mmol, lower than I would have liked just before the headline
act - Fat Boy Slim. I knew that things were about to be turned up a notch. With that in mind I removed
my pump completely and let loose. Surrounded by great friends and thousands of avid Norman Cook fans,
it was the right thing to do. There’s also something extremely empowering and rebellious about removing
your insulin pump (not something I do lightly). I’d love to say during his 90-minute set with my
pump detached, I could almost forget I lived with Type 1 diabetes – but nope my CGM [Continuous Glucose Monitor] let
me know I was dropping. So, there I was in the middle of the crowd dancing [like crazy], while eating a muesli
bar. Doing my best to live well and truly beyond Type 1 diabetes.”
To read more about Ruby and her experiences with type 1 diabetes, see:
https://t1dmastery.com
To read more about Brendan and his experiences with type 1 diabetes, see:
https://www.typeonecyclist.com
Information and support for people with type 1 diabetes is available from: www.diabetes.org.nz
Further reading: Bright Spots and Landmines: the diabetes guide I wish someone had handed me. Adam Brown:
www.brightspotsandlandmines.org
