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How psychosocial factors can influence diabetes outcomes

Health psychologist Professor KatharineBarnard explores the role that psychosocialfactors play in the management of diabetesand the importance of addressing these toimprove diabetes outcomes

Diabetes doesn’t just affect someone physically.This chronic and complex condition, whichrequires close and frequent monitoring of bloodsugar levels alongside careful consideration ofactivity and nutrition, places high behaviouraldemands on the person living with the illness on adaily basis. This can have a significant impact on aperson’s mental health, well-being and theirquality of life.

This impact can manifest itself in the form ofstress, depression and resentment, among others.Known as psychosocial factors, these are complexand multifaceted, further impacted by the effect of

varying blood sugar levels on mood. Studiesinvestigating the psychosocial consequences ofbeing stigmatized have reported patients with diabetesexperiencing feelings of fear, embarrassment,blame, guilt, anxiety, and low self-esteem1. It’s notuncommon for people with diabetes to fear dips intheir blood sugar (hypoglycaemia), while the use ofneedles and the concern over the possibility forcomplications from the disease both create anotherlevel of stress. The burden of these constant thoughtsevery day can be overwhelming and exhausting 2.

It’s perhaps not surprising then that at least 3 in 5people with diabetes have been found to experienceemotional or psychological problems affecting theirwell-being 3, while there is consistent evidence ofelevated rates of depression and anxiety disorders,which present at higher levels compared with thegeneral population4. A survey of more than 9,000people with diabetes by Diabetes UK (DUK) lastyear, found that 64% of people with diabetes

Psychosocial factors influence diabetes outcomes

“sometimes or often” feel down because of theirdisease2. Indeed, a top point revealed in the DUKsurvey was the need for more emotional andpsychological support in order to make living withdiabetes easier 2. These findings highlight that it’snot the mechanism of managing diabetes that isdifficult, it’s the living with diabetes, the emotionalburden, that is hard to do.

These points are important to consider becausepsychosocial factors can impact a person withdiabetes’ ability and motivation to self-manage thecondition, leading to poorer health outcomes,reduced quality of life and increased healthcarecosts5. Being able to access appropriate psychologicalsupport is an integral part of self-management andis a core service component in the NHS Right Carepathway for diabetes and provision in NICEguidelines. And yet, according to another DUKsurvey, this time in 2015, 76% of people withdiabetes who needed emotional or psychologicalsupport from a specialist were not offered it 6. An earlier study suggests 85% of people withdiabetes do not have access to specialist psychologicalservices and even where a service is available, the waiting time to be seen frequently exceedsthree months 4.

Given that most people with diabetes havesuboptimal blood sugar control – just 20% ofpeople with type 2 diabetes in the UK achieved therecommended targets for glycaemic control, bloodpressure and lipid levels in 2010-11, according toDUK 7 – and given that diabetes already costs theNHS £5.5 billion a year 8, this points to two startlingfacts: firstly, that controlling blood sugar is verydifficult; and secondly, something about the currentsystem is not working. As such, there is a growingconsensus that calls for a change in how diabetes istreated and managed, with a need to focus on theconcept of living with diabetes rather than justtreating the disease.

For several years it has been argued that a greaterfocus on psychosocial factors, as part of the approachto diabetes diagnosis and management, is neededin a bid to address the challenges that diabetespresents. As previously mentioned, considerationof these factors is virtually non-existent in currentcare, yet their consideration is seen as crucial interms of providing support to meet the needs ofpeople with diabetes and to improve blood glucosecontrol. As Diabetes UK notes in its separateMinding the Gap report: “Addressing psychologicalbarriers may dramatically improve glycaemiccontrol as well as the quality of life for the personwith diabetes… The provision of information,education and psychological support that facilitatesself-management is, therefore, the cornerstone of diabetes care.”4 Indeed, by not includingpsychosocial factors in diabetes diagnosis andmanagement it misses a huge part of the diabetespicture – and until we consider psychosocial factorsthere is strong evidence to suggest we won’t see animprovement in outcomes.

This does, of course, require a paradigm shift inthinking, as well as a move away from a purelymedical model. But it’s not a world away from whatthe healthcare system is ultimately wanting toachieve. By focusing on reducing the burden ofliving with diabetes and improving the quality oflife for people with the disease, the naturaloutcome is optimal blood sugar control. We reachthe NHS’ desired outcome but have come to it in adifferent way.

A 2014 paper in Diabetic Medicine outlined one suchway this could be achieved through a new holisticmodel for diabetes care. Known as the Kaleidoscopemodel, this approach aims to understand thedriving forces behind behaviour and its impact ondiabetes management. It provides a flexible,personalised approach to care, considering thatpsychosocial factors can change over time7.

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At the heart of any new approach, however, will bethe requirement to ask people with diabetes whatthey need and then provide that personalisedsupport. This contrasts with what is seen in manycircumstances today. For example, in the case ofcontinuous glucose monitors (CGM), whichcontinuously measure glucose in the interstitialfluid via a digital sensor attached to the body,healthcare professionals will often give these topeople with diabetes, without first asking them whythey might want the new technology and how it willimprove their quality of life and without providingthe right support or education. If people withdiabetes see these devices as too complicated ordon’t use them effectively, then outcomes won’timprove, and mental health and wellbeing willdecrease. The focus should not be on the device, butrather on the needs of the individual and tailoringthe treatment to meet those needs; ensuring it is theright therapy for the right person at the right time.

That being said, there is certainly a place fortechnology in diabetes diagnosis and management,with the expectation that it will reduce the mentalburden of living with diabetes and improve thequality of life.

Advances in addressing psychosocial factorsthrough technology to improve outcomes have beenslow but breakthroughs are starting to be seen. ThePRECISE study, the results of which were publishedin the journal Diabetes Care in 2017, are a case inpoint. This European 180-day, prospective, multi-centre, pivotal trial – funded by Senseonics Inc. –looked to assess the safety and accuracy of Eversenseby Senseonics, a new type of CGM system that usesan implantable glucose sensor, which can measureglucose values for up to 180 days, compared to sevenor up to 14 days for non-implantable systems thatare currently available in the market. The resultswere positive for safety and accuracy, lending itssupport as a worthy alternative to the traditionaltranscutaneous CGM system9.

But what was significant about this particular studywas that participant- reported outcomes measureslooking at the quality of life were also assessed.The study showed that 90% of the participantsstated that: “using the system helped minimise theburden of diabetes in my life”, although the studydid not register an improvement in the perceivedquality of life9.

A psychosocial sub-study went further to determinethe acceptability and impact of the implantableCGM sensor. Here, the responses to questionnaires

“Studies investigating thepsychosocial consequences being stigmatized havereported patients with diabexperiencing feelings of feaembarrassment, blame, guianxiety, and low self-esteem

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noted a significant improvement in the level ofdiabetes distress, which corresponded with animprovement in blood glucose control. According tothe results, 90% of CGM naïve participants and81% of previous CGM users, reported increasedconfidence about diabetes management, 73% feltsafer while sleeping and 78% felt more confidentabout avoiding serious hypoglycaemia, while 93%of CGM naïve participants (and 86% of previousCGM users) reported a minimised burden ofdiabetes. The responses were seen to correspondwith an average improvement in HbA1c from 7.51 to

7.05 over the 90 days of using the CGM10. Such areduction is associated with a reduced risk ofdeveloping a diabetes-related complication.

This study is indicative of a wider – albeit slow – shifttowards adopting the consideration of psychosocialfactors in diabetes diagnosis and management. Inthe US, the US Food and Drug Administration, incollaboration with diabetes experts, is looking atdeveloping patient-reported outcomes measures(Inspire Measures) – looking at the trade-offs in aclosed-loop artificial pancreas system to gain a level

of

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of benefit – that is, how much management (i.e.physically having to change sensors) would a personwith diabetes be willing to accept to gain a level ofbenefit from the device. This will form part of thedecision algorithm in diabetes management, with afirst draft expected to be published shortly.

Indeed, there is even an attempt to harmonisepatient-reported outcomes across clinical trials sothat psychosocial patient-reported outcomes can bemeasured through robust and meaningful validatedquestions alongside therapy safety and efficacy. TheNational Institutes of Health in the US have recently

announced the funding of four artificial pancreastrials that use the Inspire Measures to betterunderstand patients.

One device company, Roche Diabetes Care, is alsoexploring this concept and has a clinical trial forone of its devices powered on validated patient-reported outcomes measures to demonstrate theefficacy of the device, based on the reduction ofpsychosocial factors. This is a very innovative andforward-thinking approach to doing clinical trials,highlighting the growing importance thatpsychosocial factors play in diabetes management.

“If people with diabetessee these devices as too

complicated or don’t use them effectively,then outcomes won’timprove, and mentalhealth and wellbeing

will decrease.”

Elsewhere in the US, the American DiabetesAssociation has partnered with the AmericanPsychological Association to train more than 100mental health providers in diabetes-specificeducation to prepare them with the knowledge andtools to treat the unique mental health challengesassociated with diabetes. The move acknowledgesthat there are a limited number of trainedhealthcare professionals with experience to addressthe psychosocial factors and meet the mental healthneeds of patients with diabetes.

The UK has been slower to adopt the considerationof psychosocial factors, but interest in this isgaining momentum. The All-Party ParliamentaryGroup (APPG) for Diabetes met in March 2018 todiscuss emotional and psychological support forpeople with diabetes, discussing amongst otherthings, suggestions, such as the introduction oftwice yearly training for medical staff to specificallyaddress diabetes and mental health5.

During the meeting, NHS Grampian, which offerspeople with diabetes an annual screening foranxiety and depression, was heralded as an exemplarof how to consider psychosocial factors in diabetes.This effort was seen to help raise awareness ofemotional wellbeing and help prioritise topics ofcare and the tailoring of treatment. The APPGrecommended that the NHS Grampian model isadopted across NHS England, alongside theintroduction of a National Diabetes Database withmental health information, noting that: “Diabetesand mental health can be difficult to separate,which is why there is a need for additional specialistsupport and understanding.”5 The APPG meetingand the recommendations reflect a willingness toengage in this area. While the exact level ofengagement is still to be seen, this is a step in theright direction – even if it is just financially driven.

Understanding how psychosocial factors impactupon the efficacy of treatments will fundamentallyshake up diabetes management. Placing the person

with diabetes as the central pillar and focusing onaddressing psychosocial factors is critical forshifting the needle in diabetes outcomes. Ashealthcare professionals, we want people withdiabetes to be prescribed the right therapy that isappropriate for them at that time. With the rightpersonalised support in place, people with diabetescan achieve optimal blood sugar control withminimal diabetes burden. In this scenario,everyone wins.

References1. Liu, N. et al (2017). Clinical Diabetes. Stigma in People With Type 1 or

Type 2 Diabetes. 35(1): 27–34. https://www.ncbi.nlm.nih.gov/pmc/

articles/PMC5241772/ Accessed May 2018.

2. Diabetes UK, The Future of Diabetes report (2017) https://www.diabetes

.org.uk/resources-s3/2017-11/1111B%20The%20future%20of%20

diabetes%20report_FINAL_.pdf. Accessed May 2018.

3. Diabetes UK, Three in five people with diabetes experience emotional or

mental health problems. https://www.diabetes.org.uk/About_us/News/

three-in-five-people-with-diabetes-experience-emotional-or-mental-

health-problems. Accessed May 2018.

4. Diabetes UK, Minding the Gap report (2008). https://www.diabetes.org

.uk/resources-s3/2017-11/minding_the_gap_psychological_report.pdf.

Accessed May 2018.

5. All Party Parliamentary Group for Diabetes, discussing Emotional and

Psychological Support for People with Diabetes – 22nd March 2018.

6. Diabetes UK, 15 Healthcare Essentials online survey (2015).

7. Barnard, K. et al (2014), Diabetic Medicine. Kaleidoscope model of

diabetes care: time for a rethink? 31(5): p522-p530.

https://doi.org/10.1111/dme.12400. Accessed May 2018

8. House of Commons Hansard, Diabetes debate 26 February 2018

https://hansard.parliament.uk/Commons/2018-02-26/debates/5F27

A5C5-45C2-43E5-8E4D-882F9161B39A/Diabetes Accessed May 2018.

9. Kropff, j. et al (2017), Diabetes Care. Accuracy and Longevity of an

Implantable Continuous Glucose Sensor in the PRECISE Study:

A 180-Day, Prospective, Multicenter, Pivotal Trial. 40(1): p63-p68.

https://doi.org/10.2337/dc16-1525. Accessed May 2018

10. Barnard, K. et al (2017), Journal of Diabetes Science and Technology.

Acceptability of Implantable Continuous Glucose Monitoring Sensor.

12(3): p634-p638. https://doi.org/10.1177/1932296817735123

Accessed May 2018.

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Diabetes is the fastest growing health crisis ofour time. There are 3.7 million people nowliving with the condition in the UK, a figure

that has more than doubled in the last 20 years.

A diagnosis of diabetes is very serious. The conditionrequires constant self-management, includinglifelong, daily injections of insulin if you have Type 1diabetes or insulin-controlled Type 2 diabetes. Ifpeople are not supported to manage diabetes, it canlead to devastating complications. Diabetes is theleading cause of preventable sight loss in people ofworking age in the UK and is a major cause of lowerlimb amputation, kidney failure and stroke.

As well as the human cost, diabetes and its many complications cost the NHS £10 billion every year,which represents around 10% of the entire NHSbudget. With the number of people living with

diabetes continuing to rise, there is a real risk thesefigures will rise in tandem to unsustainable levels.

That’s why it’s crucial that we support people with diabetes to live well with the condition and indoing so, to reduce their risk of developing thesedevastating and costly complications.

While there have been improvements to the deliveryof diabetes care in England and Wales, the overallhealth outcomes for people with diabetes are stillmarked by significant levels of variation. Data fromthe 2016-2017 National Diabetes Audit shows thatjust 18.9% of people with Type 1 diabetes and only40.8% of people with Type 2 diabetes are achievingthe recommended treatment targets for bloodglucose, cholesterol and blood pressure.

Thankfully, after many years of campaigning byDiabetes UK, in partnership with people affected bydiabetes, the government and our health leadersnow recognise that improving the quality of diabetescare is key to helping people with the condition livelong, full lives and in turn, reducing the huge burdenon the NHS.

Head of Policy, Knowledge and Insight atDiabetes UK, Robin Hewings sheds lighton the condition of diabetes in the UK

Diabetes: The fastest growing health crisis of our time

EDITORIAL FEATURE

This is what, in part, led to the announcement fromNHS England Chief Executive Simon Stevens at our Professional Conference in March that a further£40 million has been earmarked to drive improve -ments in diabetes care, via the NHS’ TransformationFunding.

The diabetes Transformation Funding, which waslaunched in 2017, is a pot of money that CCGs canbid for to target key diabetes services forimprovement. The extra funding, combined withthe diabetes Improvement and AssessmentFramework, which assesses CCGs on how theyperform key diabetes services, could help toradically improve health outcomes for people withdiabetes if it is sustained.

Reducing the number of people at risk of Type 2diabetes would also help to reduce the impact of thecondition on the NHS. Type 2 diabetes accounts for90% of diabetes cases and unlike Type 1 diabetes,is closely linked to being overweight and obese so,

in most cases, could be prevented or delayed bymaintaining a healthy weight.

The NHS Diabetes Prevention Programme, a jointinitiative between Diabetes UK, NHS England andPublic Health England, is doing great work to identifyand support some of the 5 million people in the UKwho are at high risk of Type 2 diabetes to make thenecessary lifestyle changes to reduce their risk.

But we also need to create a healthier environmentto make it as easy as possible for all of us to makehealthier choices and in turn, reduce our risk ofdeveloping Type 2 diabetes. All too often making theunhealthy choice is the easy choice.

This is why we are also calling on the government tointroduce mandatory front of pack traffic lightfood labelling, through our Food Upfront campaign;ban price promotions on junk food and toughenrestrictions on junk food advertising to children.

Diabetes presents a huge challenge but, if we getbetter at preventing Type 2 diabetes and improvingcare for people diagnosed with Type 1 and Type 2 diabetes, we can achieve our vision of a world wherediabetes does no harm.

Robin HewingsHead of Policy, Knowledge and InsightDiabetes UKTel: +44 (0)345 123 2399helpline@diabetes.org.ukwww.diabetes.org.ukwww.twitter.com/DiabetesUK

Robin Hewings, Head of Policy, Knowledge and Insight

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