Role of multilevel policy initiatives in promoting the earlier diagnosis of cancer – what can we learn from the Detect Cancer Early Programme in Scotland?

Abstract

Background: Early cancer detection and early diagnosis have a key role in multilevel policy initiatives aiming to improve cancer outcomes. In Scotland, the Detect Cancer Early (DCE) Programme was launched in 2012 with the aim to increase the proportion of lung, breast and bowel cancers diagnosed at Stage I by 25%. Initiatives such as DCE are complex, with many interacting components, and influenced by the context. It is important to investigate such initiatives to ensure accountability, to learn from their experience, and inform other strategies. This PhD aimed to investigate the role of multilevel policy initiatives in promoting the earlier diagnosis of cancer, using the DCE Programme as a case study. Objectives were: 1) to understand the international landscape of multilevel policy initiatives promoting earlier cancer diagnosis; 2) to evaluate DCE’s first three years (2012-2015); 3) to compare DCE with other initiatives; and 4) to provide recommendations for policy. Methods: Three studies were carried out: 1) a systematic review (Study 1) synthesising characteristics of multilevel policy initiatives promoting the earlier diagnosis of cancer, their target populations, outcomes and stakeholder views; 2) development and refinement of a mixed-methods, theory-based evaluation (Study 2), carried out through documentary analysis and stakeholder interviews, guided by the Medical Research Council Framework for Process Evaluation of Complex Interventions, complexity theory/systems thinking, and theory-based evaluation in order to elicit programme theory, implementation assumptions and mechanisms of impact; 3) an evaluation of the DCE programme (Study 3); its outcomes (through secondary analyses of data) and processes (whether assumptions and mechanisms were confirmed by stakeholders, barriers and facilitators, and unanticipated outcomes) through stakeholder interviews and an online questionnaire. Results: Study 1: eighteen initiatives from 10 countries were included and grouped as strategies to improve public cancer awareness and/or knowledge, professional education, referral pathways based on cancer symptoms or combinations of these strategies. Most of them targeted patients suspected of having cancer based on high-risk symptom criteria. Very few of them reported on high-level outcomes such as survival (inconclusive results), mortality (one study; higher mortality associated with low use of urgent referral pathways) and tumour staging (some positive results). Other outcomes included positive changes in knowledge/awareness (but limited impact on behaviour) and reduced diagnostic intervals. Views on initiatives were often positive. Study 2: 160 documents were analysed and a logic model was developed; nine stakeholders were interviewed – this resulted in a refined logic model, development of a textual programme theory and outcomes chains, and elicited assumptions and mechanisms to be examined in the evaluation. Study 3: a) outcome evaluation: DCE objectives were often aspirational, with limited outcome measures and data availability – DCE’s key aim was not met, although there were improvements in tumour staging; there was increase in awareness of cancer symptoms and signs, in consultations due to breast symptoms and in requests for bowel screening kits, but barriers to help-seeking persisted; b) process evaluation: 25 stakeholders were interviewed and 53 completed the questionnaire. There was support for an early detection initiative, and most agreed that DCE was part of their role. Increasing diagnostic resources was challenging when there was no staff available to recruit. Communication challenges influenced engagement and sense of ownership. Demand drove action but resulted in frustration, especially when strategies attracted the worried well seeking reassurance. Targets negatively influenced engagement when they were perceived to be unachievable and to have limited clinical relevance. Several barriers and facilitators were described, in addition to unanticipated outcomes. By being a government initiative, DCE brought early cancer detection to the centre of attention, but also generated conflict due to short timescales (not conducive to long-term changes). Discussion: Multilevel policy initiatives give prominence to earlier diagnosis of cancer. There are mixed findings on their benefits, and the ability to measure impact is affected by variation in outcome measures, data availability, and the short-term aspect of government initiatives. In Scotland, the aspirational nature of objectives and limited definition of outcome measures hindered outcome assessment, while the process evaluation highlighted support for DCE, provided that communication is efficient, efforts are acknowledged, structural barriers are recognised and stakeholders are able to see that they can make a difference. Recommendations for policy refer to data quality, relevance and availability; setting measurable objectives; targeting populations at risk; communication and dissemination; and considering contextual influencers. Results show that much can be learned from available initiatives promoting the earlier diagnosis of cancer