Using behaviour change and implementation science to address low referral rates in oncology

Abstract

BackgroundPatients undergoing surgery for bowel cancer now have a routine screening test to assess their genetic predisposition to this and other cancers (Lynch syndrome). A result indicating a high risk should trigger referral to a genetic clinic for diagnostic testing, information, and management. Appropriate management of Lynch syndrome lowers morbidity and mortality from cancer for patients and their family, but referral rates are low. The aim of this project was to increase referral rates for patients at high risk of Lynch syndrome at two Australian hospitals, using the Theoretical Domains Framework (TDF) Implementation approach.MethodsMultidisciplinary teams at each hospital mapped the referral process and discussed barriers to referral. A 12-month retrospective audit measured baseline referral rates. The validated Influences on Patient Safety Behaviours Questionnaire was administered to evaluate barriers using the TDF. Results were discussed in focus groups and interviews, and interventions co-designed, guided by theory. Continuous monitoring audits assessed change in referral rates.ResultsTeams (n = 8, 11) at each hospital mapped referral processes. Baseline referral rates were 80% (4/5) from 71 screened patients and 8% (1/14) from 113 patients respectively. The questionnaire response rate was 51% (36/71). Most significant barrier domains were: ‘environmental context;’ ‘memory and decision making;’ ‘skills;’ and ‘beliefs about capabilities.’ Focus groups and interviews with 19 healthcare professionals confirmed these domains as significant. Fifteen interventions were proposed considering both emerging and theory-based results. Interventions included: clarification of pathology reports, education, introduction of e-referrals, and inclusion of genetic status in documentation.Audits continued to December 2016 showing a change in pathology processes which increased the accuracy of screening. The referral rate remained low: 46% at Hospital A and 9% Hospital B. Results suggest patients who have their referral deferred for some reason are not referred later.ConclusionLynch syndrome is typical of low incidence problems likely to overwhelm the system as genomic testing becomes mainstream. It is crucial for health researchers to test methods and define generalizable solutions to address this problem. Whilst our approach did not improve referrals, we have deepened our understanding of barriers to referral and approaches to low frequency conditions.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3653-1) contains supplementary material, which is available to authorized users.

The time has come: Embedded implementation research for health care improvement

“…However, the research team connected weekly with the two participating hospitals to facilitate access through ethics and governance approvals, establish implementation teams, lead process mapping exercises, coordinate audit data collection, distribute questionnaires, drive intervention development, and support implementation. Based on this work, while the referral processes improved, the primary outcome measure—proportion of appropriate referrals—was largely unchanged …”

The health and economic impact of implementation strategies for improving detection of hereditary cancer patients—protocol for an in-depth cost-effectiveness evaluation with microsimulation modelling

“…An estimated 53% of Australian laboratories are yet to adopt a universal Lynch syndrome tumour testing strategy [18], and even when tumour testing is performed, genetic referral rates for those with abnormal results (indicating a high risk of Lynch syndrome) are poor. Two recent Australian studies demonstrated that a minority (34% and 26%, respectively) of colorectal cancer patients with abnormal tumour test results were referred for genetic counselling and testing [16,17]. Similar findings have also been demonstrated in the international setting [19][20][21], highlighting a need for implementation interventions to improve genetic referral and Lynch syndrome diagnosis.…”

“…Based on an indicative willingness-to-pay threshold of $30,000-$50,000 per LYS, this approach is likely to be considered costeffective by decision makers [14]. Despite this, uptake of the Lynch syndrome tumour testing and referral pathway remains suboptimal [15][16][17]. An estimated 53% of Australian laboratories are yet to adopt a universal Lynch syndrome tumour testing strategy [18], and even when tumour testing is performed, genetic referral rates for those with abnormal results (indicating a high risk of Lynch syndrome) are poor.…”

Understanding implementation success: protocol for an in-depth, mixed-methods process evaluation of a cluster randomised controlled trial testing methods to improve detection of Lynch syndrome in Australian hospitals

“…Furthermore, the tool has been used successfully to identify barriers in the context of LS in the HaSP pilot study. 32 The IPSBQ will be distributed by Implementation Leads to LS stakeholders at each hospital network at time points before and after the intervention implementation to assess for changes in perceived LS referral barriers. Implementation Leads will be encouraged to seek a large sample (approximately 20-40, depending on hospital network size) with representation from each of the key departments involved in the LS referral pathway to ensure correct identification of key barriers.…”