Achieving behaviour change for identification and management of Lynch syndrome

Cancer Challenge of the Year 2015

Project members - Macquarie University

Dr Janet Long - Research Fellow

Dr Natalie Taylor - Honorary Senior Research Fellow

Dr Deborah Debono - Visiting Fellow

Project members - external

Dr Melvin Chin - Medical Oncologist

Dr Elizabeth Salisbury – Clinical Director Anatomical Pathology

Ms Rachel Williams – Cancer Genetics Counsellor Network Clinical Lead

Dr Sharron O’Neill – Director Lynch Syndrome Australia

Mrs Mary Potter – Consumer Advisory Council member TCRN

Dr Elizabeth Dulai – Pathology Registrar

Dr Jordan Butler – Pathology Registrar

Dr Tracey Dunlop - Colorectal surgeon

Dr Kim-Chi Phan-Thien - Colorectal surgeon

Project main description

Each year, approximately 15,000 Australians are diagnosed with bowel cancer, leading to 4,000-5,000 deaths. Although different things can contribute to bowel cancer development, one known cause is Lynch syndrome. Lynch syndrome is inherited through families and can cause various cancers, often at a young age. It is believed to affect tens-of-thousands of Australians, but is extremely underdiagnosed.

Cancer patients identified as being at high risk of Lynch syndrome can take a genetic test. This enables carriers to engage in effective screening protocols, detect and treat cancer early, and educate relatives. Early diagnosis is therefore critical to extending and saving lives. Yet of those NSW bowel cancer patients at high risk of Lynch syndrome, less than half are currently referred for genetic testing. Unidentified carriers remain unaware of their greater cancer risk or the need for ongoing screening. Relatives may also miss the opportunity to discover if they have Lynch syndrome. These delays in detecting and managing cancer may lead to loss of life.

Low referral rates for screening patients at high risk of Lynch syndrome are not unique to Australia, yet there is little research informing improvement in referral practices. The global consensus is that healthcare behaviour change interventions should identify and target barriers to change. Some evidence exists for the factors affecting clinical decisions and actions for patients who may benefit from screening to detect LS. However, the development and implementation of evidence-based interventions to address HCP barriers to referring high-likelihood risk LS bowel cancer patients for genetic testing is lacking.

Background

The validated, six-step Theoretical Domains Framework Implementation (TDFI) approach (Taylor, Lawton et al. 2013)uses behaviour change theory and implementation science principles to identify and address key barriers to changing clinicial practice. Barriers are represented by 11 domains of behaviour change, e.g., ‘knowledge’, ‘skills’, ‘social influences’, ‘emotion’, ‘environment’, ‘professional role and identity’, ‘memory, attention, decision processes’. These domains are based on theoretical constructs from multiple psychological and organisational behaviour change theories (Michie, Johnston et al. 2005). Authenticating a bottom-up strategy, the TDFI approach uniquely aims to facilitate a collaborative team with a blend of front-line HCP expertise and theoretical support to co-work through an implementation process. We have successfully used this approach to demonstrate clinical, statistical and cost-effective improvements in guideline implementation (e.g., for anaesthetics, enteral feeding) across UK hospitals. For example, significant increases in the use of the safest method for checking nasogastric tube position were seen across intervention hospitals in comparison to the control. Cost-effectiveness analysis indicated estimated savings of £2.56million across 34 UK hospitals (Taylor, Lawton et al. 2013, Taylor, Parveen et al. 2013, Taylor, Lawton et al. 2014).

Aims

To increase the identification and efficiency of referral for people with colorectal cancer and a high risk of Lynch syndrome using co-designed evidence-based interventions.

Clinical outcomes: Identifying patients with LS can significantly reduce morbidity and mortality from cancer as it allows second primary cancers to be detected early and possibly prevented. In addition, it alerts relatives that they may also be carriers and gives them the opportunity for testing, and if needed, appropriate risk management. Increased surveillance leading to early detection means reduced invasive treatments, loss of life and lower long-term healthcare costs. As LS is an autosomal dominant condition, around half of the person’s relatives are likely to be affected. Hereditary cancer specialists estimate that each carrier may have 8-11 family members that should be given the opportunity for testing. The significance of identifying carriers is thus multiplied.

Design and method

The six-step Theoretical Domains Framework Implementation (TDFI) approach is being applied at two large, Australian metropolitan hospitals. Steps are: 1. Form local multidisciplinary teams to map current processes. 2. Identify target behaviours for change using discussion and retrospective audit. 3. Identify barriers to change using a validated questionnaire.4. Confirm and address barriers using co-designed strategies. 5. Support implementation. 6. Evaluate intervention impact.

Findings

To date we have completed the first five steps of the six step TDFI approach. This project has demonstrated that 64% and 87% of patients at high risk of Lynch syndrome (LS) (at Hospital 1 and 2 respectively) were not referred to the genetics service in the 12 months prior to the project as the guidelines direct. We have used a behaviour change theory-based approach to identify which behaviours are crucial to ensuring patients at high risk are referred and have proposed a package of 15 interventions to address the barriers to change. Twelve of these interventions have been supported and officially approved by senior management. The 12 interventions are now being co-designed by researchers and clinicians. As interventions are rolled out we will monitor the change in referral rates which in turn are likely to lead to significant clinical outcomes.

Project contacts

Dr Janet Long
T: +61 2 9850 2472
E: janet.long@mq.edu.au

Publications

Taylor, N., J. Long, D. Debono, R. Williams, E. Salisbury, S. O’Neill, E. Eykman, J. Braithwaite and M. Chin (2016). "Achieving behaviour change for detection and management of Lynch syndrome using the Theoretical Domains Framework Implementation (TDFI) approach: a study protocol." BMC Health Services Research 16:89

References

1. Michie, S., M. Johnston, C. Abraham, R. Lawton, D. Parker and A. Walker (2005). "Making psychological theory useful for implementing evidence based practice: a consensus approach." Quality and Safety in Health Care 14(1): 26-33.
2. Taylor, N., R. Lawton, S. Moore, J. Craig, B. Slater, A. Cracknell, J. Wright and M. Mohammed (2014). "Collaborating with front-line healthcare professionals: the clinical and cost effectiveness of a theory based approach to the implementation of a national guideline." BMC Health Services Research 14(1): 1-10.
3. Taylor, N., R. Lawton, B. Slater and R. Foy (2013). "The demonstration of a theory-based approach to the design of localized patient safety interventions." Implementation Science 8(1): 123.
4. Taylor, N., S. Parveen, V. Robins, B. Slater and R. Lawton (2013). "Development and initial validation of the Influences on Patient Safety Behaviours Questionnaire." Implementation Science 8(1): 81.

Project sponsors

Translational Cancer Research Network (TCRN) funded by Cancer Institute NSW & Lynch Syndrome Australia

Collaborative partners

Translational Cancer Research Network (TCRN), Lynch Syndrome Australia

Project status

Current

Centres related to this project

Centre for Healthcare Resilience and Implementation Science