The Adolescent Diabetes Needs Assessment Tool (ADNAT) Research Programme
Submitting InstitutionUniversity of Chester
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypePolitical
Research Subject Area(s)
Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Summary of the impact
An urgent need has been identified to redesign diabetes health services
for young people in the UK, which has the fifth largest paediatric
diabetes population in the world with no standardised approach to care.
The Adolescent Diabetes Needs Assessment Tool (ADNAT) App is the first
intervention of its kind filling a recognised gap in UK service provision.
Evidence from the underpinning research programme that has studied
adolescent diabetes self-care and explored technological methods of
learning, has guided the development, validation and clinical evaluation
of ADNAT which has now been included in the UK's 2013-2018 National
Paediatric Service Improvement Delivery Plan.
The UK has one of the poorest levels of paediatric glycaemic control in
Europe, particularly during adolescence. It was vital that services were
changed to address this serious issue, and systematically identifying
patients' needs was fundamental to this process.
Previous research provided the groundwork for the ADNAT research
programme. It includes a PhD study of a lifestyle intervention for adults
with Type 2 diabetes (University of Liverpool, Cooper, 1997-2001) which
validated the need for theoretical foundations and the use of combined
research methods. It also includes a four year study of interprofessional
education at the undergraduate level (University of Liverpool, Cooper
(Chief Investigator), Spencer-Dawes (Researcher), McLean (Trainer),
Carlisle (Researcher), 2003-2007,) which led to a developing expertise in
complexity science as a new theoretical paradigm for the study of
education, behaviour and health.
This case study is centred upon the work of Cooper (Professor, University
of Chester 2008-present). The ADNAT research programme [Cooper (Chief
Investigator), Spencer (Researcher), Lwin (Senior Lecturer & Paed.
Clin. Psychol.) & Wheeler (Researcher), University of Chester;
Lancaster & Titman (Statisticians), Lancaster University; Johnson
(Educational Technologist) University of Bolton — 2008-present] is focused
on young people aged 12-18 years living with Type 1 diabetes (T1D).
Following the Medical Research Council's framework for the design and
evaluation of complex interventions, it includes a qualitative
phenomenological PhD study of the experiences of adolescents with T1D and
their families (Spencer, University of Liverpool, 2009), and their
diabetes healthcare team (Spencer & Cooper, University of Chester,
2010); alongside two systematic reviews. The first examined educational
technologies for young people living with T1D [Cooper H. (Principal
Investigator), University of Chester; Cooper J. (Research Assistant) &
Milton (Researcher), University of Liverpool — 2008-09], and another
studied the qualitative literature on adolescence and T1D (Spencer &
Cooper, University of Chester & Milton, University of Liverpool —
This work highlighted the importance of needs assessment to guide
tailored experiential learning and support for young people, but found no
existing validated UK instruments to facilitate this process. This
evidence guided the development, psychometric testing and clinical
evaluation of ADNAT, which is a unique combined education and assessment
Methodology involved a five-stage intervention developmental phase,
followed by a second phase to evaluate the tool's psychometric properties.
A third phase evaluated perceptions of its usefulness with users and
providers, and a fourth phase is currently re-testing the tool and
evaluating its clinical utility. A fifth phase (in development) will
utilise combined methods to determine the efficacy of the ADNAT App. Over
200 young people participated in the first three phases. ADNAT consists of
117 questions divided between six interconnecting domains of educational
and psychosocial support needs. All the questions stimulate reflection on
personal experiences as prompts to integrated scored assessment of
self-care and psychosocial health. Face and content validity of the
scoring items were all positively evaluated in terms of appropriateness
and readability. Tests for validity found significant correlations with
the only other (non-educational) American self-care assessment
questionnaire (Self-management of Diabetes in Adolescence — SMOD-A) (r
= -0.41, p < 0.001). Correlation with glycated haemoglobin (HbA1c)
was weak (r =0.16, p = 0.056) but this compared favourably with
SMOD-A (r = -0.06, p=0.52), indicating that ADNAT taps into the
construct of `self-care' more successfully.
The third phase of the study (evaluation of users' and providers'
perceptions of ADNAT) highlighted the need to expand accessibility.
Working with a technology company (HealthImo), the ADNAT App and
website, www.myadnat.co.uk, were
built, alongside secure access through mobile devices, and delivery of
assessment feedback to users and confidential patient data to providers.
This work provided the foundations for the evaluation study [Cooper, Lwin,
Lancaster, Ghatak (Consultant Paediatrician), Alder Hey Children's NHS
Trust; & Waldron (NHS Paediatric Diabetes Education Lead, 2013 —
present] which is providing data for the fifth phase which will utilise
combined methods to determine effectiveness. This study is being developed
for NIHR finding in liaison with the NHS Paediatric Diabetes Education and
Clinical Team and the Royal College of Paediatrics and Child Health with a
view to integrating ADNAT into the National Paediatric Diabetes Audit.
References to the research
The programme has won two awards including the Diabetes UK Annual
Professional Conference Education Award (2007), and `highly commended' at
the Royal College of Nursing International Research Conference (2010). The
following six peer reviewed publications and their associated research
grants provide evidence of the research's quality:
1. Cooper H., Spencer J., Lancaster G., Titman A., Johnson M., Wheeler
S., Lwin R. (2013) Development and psychometric testing of the on-line
`Adolescent Diabetes Needs Assessment Tool' instrument. Journal of
Advanced Nursing. Early on-line view. doi: 10.1111/jan.12235. Grants
to Cooper at University of Chester: (i) Diabetes UK, `Development of
ADNAT': £197,335 (2009-2012). (ii) National Institute for Health Research
(NIHR) Cheshire, Merseyside and North Wales Medicines for Children's
Research (CMNWMCRN) Network Trials Unit: 3 year secondment, £78,843
(2011-2014), funding for research equipment, £5,680 (2013-14), and funding
to support Senior Researcher (Dr Joy Spencer), £19,589 (2011-2012).
2. Cooper H., Spencer J., Lancaster J., Johnson M., Lwin R.,(2013)
Perceptions of the Clinical Usefulness of the Adolescent Diabetes Needs
Assessment Tool (ADNAT). Diabetes Care for Children and Young People,
1(2), 55-61.Grants: as for 1.
3. Spencer J., Cooper H., Milton B., (2013) A qualitative
phenomenological study to explore the lived experiences of young people
(13-16 years) with type 1 diabetes and their parents. Diabetic Medicine,
30, e17-e24. DOI: 10.1111/dme.12021. Grant: University of
Liverpool (funder), £56,135 (2005-08).
4. Spencer J., Cooper H., Milton B.. (2010). Qualitative studies of Type
1 diabetes in adolescence: a systematic literature review. Pediatric
Diabetes, 11(5), 364-375. DOI: 10.1111/j.1399-5448.2009.00603.x Grant:
University of Liverpool (funder).
5. Cooper H., Cooper J., Milton B. (2009). Technology-based approaches to
patient education for young people living with diabetes: a systematic
literature review. Pediatric Diabetes, 10, 474-483. DOI:
10.1111lj.399-5448.2009.00509.x Grant: University of Liverpool
(funder), £2,690 (2007-08).
6. Cooper H., Geyer R., (2008) Using `complexity' for improving
educational research in health care. Social Science and Medicine, 67,
177-182. DOI: 10.1016/j.socscimed.2008.03.041. Grant: Cheshire and
Merseyside Strategic Health Authority, £404,018 (2001-05) to University of
Details of the impact
ADNAT supports the UK government's recommendations for tailored education
based on needs assessment as part of its recently introduced `Best
Practice Tariff' strategy (DoH (2011) Payment by Results Guidance for
2011-12. London: DoH) and integration of technology into clinical
practice (DoH (2010) Delivering 21st Century IT Support for the NHS.
National Strategic Programme. London: DoH). ADNAT has been included in the
2013-2018 National Paediatric Service Improvement Delivery Plan (NHS
Diabetes. (2013) National Paediatric Diabetes Service Improvement Plan
2013-2018. London: DoH) following uptake by the NHS Paediatric Team. In
their letter of support they state,
"ADNAT provides an opportunity to improve care in this highly
specialised field.... We are therefore happy to work with you and your
team to take ADNAT forward within the clinical field and to further its
This Team also includes the UK Project Manager for the international
SWEET Project EU (www.sweet-project.eu)
which is working to develop EU centres of reference for paediatric
diabetes for which ADNAT has been recognised as having potential for
future EU dissemination (http://onlinelibrary.wiley.com/doi/10.1111/pedi.2012.13.issue-s16/issuetoc).
ADNAT is also being discussed as a tool to provide data for the National
Paediatric Diabetes Audit, with an invitation to present at the
Royal College of Paediatric and Child Health in London in November 2013
(see email re: National Paediatric Diabetes Audit).
For researchers, ADNAT can provide both quantitative and qualitative
information regarding adolescent diabetes self-care needs. This is an
important outcome as evidence suggests that the relationship between
educational outcomes and processes can provide an understanding of how
interventions should be targeted.
The ADNAT study is registered with the National Institute for Health
Research (NIHR) Cheshire, Merseyside and North Wales Medicines for
Children's Research (CMNWMCRN) Network Trials Unit (StudyID=6633),
and co-adopted by the Diabetes Research Network. In a letter of support,
"...ADNAT has been one of the most successful studies within the MCRN
portfolio with respect to both recruiting participants on time and the
integration with research network resources'"
As a result of this success, Professor Cooper successfully applied for a
2-day secondment to the CMNWMCRN, and funding to support the study's
research associate. The CMNWMCRN funded research nurses are also
supporting the delivery of the evaluation study in four hospitals,
including service support activities, monitoring and recruitment.
Other beneficiaries include lay volunteers who participated in the
study's Research Steering Group (n=16, 2005-2012). This group, which
comprised 50% lay people including adolescents with T1D and their parents,
ensured that the research was focused by sharing understanding of youth
culture, identification of priorities, use of suitable research tools, and
disseminated locally through peer dialogue.
Findings have been disseminated nationally and internationally at both
professional and academic conferences and have included ten personal
invitations including one to present at the International Diabetes
Federation's World Diabetes Congress in Dubai, 2011, and three key-note
lectures to National (2012) and Regional Paediatric Diabetes Professional
Meetings (South East of England, 2012, North West, 2012, and Yorkshire and
Humber, North East and North Cumbria, 2013). Other presentations include
Diabetes UK's Annual Professional Conference (2010, 2011, 2013), British
Sociological Association Medical Sociology Annual Conference (2008, 2011),
International Society for Pediatric and Adolescent Diabetes, USA (2011),
Diabetes UK Major Supporter's Events (2011, 2011), NIHR Medicines for
Children's Research Network Annual Conference (2010, 2011), NIHR Diabetes
Research Network meeting (2010), Royal College of Nursing International
Research Conference (2008, 2010), and the Royal College of Paediatrics and
Child Health (2013).
Research work in both adult and paediatric diabetes has led to
invitations to contribute to a number of national expert groups, as
summarised in Table 1 below.
Table 1: Contributions to national bodies
||Expert Steering Group member: NHS National Peer
Review Programme/Children and Young Peoples Transition Services
(see: National Peer Review Programme support letter).
||Expert adviser: Juvenile Diabetes Research Federation’s 2013
UK Type 1 Diabetes Research Roadmap (http://www.jdrf.org.uk/research/type-1-diabetes-research-roadmap).
||Member: NHS Diabetes, Paediatric Sub-Group (www.diabetes.nhs.uk/networks/paediatric_network).
||Member: DoH/Diabetes UK working group: 'Supported
||Member: MRC's College of Experts — Health Services &
Public Health Research Board.
||Expert adviser: Update review of patient education models
for type 2 diabetes, NHS R&D HTA programme (http://www.ncbi.nlm.nih.gov/pubmed/1840546).
||Expert adviser: DoH Patient Education Working Group,
National Service Framework for Diabetes (Department of
Health/Diabetes UK. (2005) Structured Patient Education in Diabetes.
Report from the Patient Education Working Group. Ref. 269106.
||Expert advisor: Review of patient education models for
diabetes, NHS R&D HTA programme (NICE. Technology Appraisal
Guidance 60. Guidance on the use of Patient-education models for
diabetes. April 2003. Ref No. NO213/ ISBN: 184257-287-3).
||Contributor: Joint DoH/MRC Research Advisory Committee on
Diabetes: Subgroup 5: Service Organisation and Delivery (DH/MRC.
Current and Future Research in Diabetes. London : Stationary Office,
2002. Ref. No. 29397).
Sources to corroborate the impact
1. ADNAT website: www.myadnat.co.uk.
Accessible via Internet Explorer (Versions 9 and above) and Google
Chrome or Safari if using mobile technology devices. For access to the
ADNAT tool and App.
2. UK Clinical Research Network Study Portfolio:
For project summary and status information.
3. Diabetes UK (Funding body for ADNAT Study): for patient/professional
website and patients' bi-monthly magazine (Balance):
- Letters/emails of support:
- NHS Paediatric Diabetes Team.
- NIHR UK Clinical Research Network: CMNWMCRN.
- NHS Diabetes, Yorkshire and the Humber and North West Paediatric
- National Peer Review Programme.
- National Paediatric Diabetes Audit.