Longitudinal evaluation of ‘Navigation’, a decision support intervention for patients with colorectal cancer and high grade glioma
: a mixed methods study

  • Sarah Shepherd

Student thesis: Doctoral ThesisDoctor of Philosophy


Introduction: At the core of UK policy for improving outcomes in cancer are goals for a healthcare where patients are empowered through information enabling engagement in shared care decisions with clinicians. Interventions to support patients’ engagement in shared decision making are lacking within colorectal cancer and high grade glioma care despite intensive treatment regimens with uncertain outcomes. Navigation, a communication and decision support intervention, has been successfully piloted with prostate and breast cancer patients who demonstrated significantly more confidence and less uncertainty in their treatment decisions. With healthcare policy advocating patients be educated and engaged in their care, the applicability of this intervention to other cancer settings is required. The Navigation intervention includes: consultation planning with a Navigator, formulation of a consultation plan and recording (summary and CD) of the medical consultation.

Objectives: To determine the effectiveness of the Navigation intervention in enhancing decision-making quality over time when compared with usual care, in patients with colorectal cancer. To explore repeated experiences of the Navigation intervention from the perspective of colorectal cancer (CRC) patients, patients with high grade glioma (HGG), and consulting clinicians.

Design and Studies: A mixed methods study using a pragmatic randomised controlled trial and qualitative evaluation was undertaken during November 2010 – December 2013. The intervention was trialled separately with two cohorts of cancer patients (CRC and HGG). A longitudinal parallel-group pragmatic randomised controlled trial was conducted. Study 1 consisted of a longitudinal parallel-group pragmatic randomised control trial. Participants with colorectal cancer were openly randomised after completion of baseline measures to receive the intervention or usual care (no intervention). The intervention was administered to patients at three particular time points during first line cancer treatment. Participants completed tools collecting primary outcome (decision self-efficacy) and secondary outcomes (decision conflict, decision regret, anxiety and depression) measured prior to baseline, post consultation and at follow-up. Mean change in scores overtime and between groups were compared using Mixed ANOVAS. Study two was a prospective qualitative study undertaking serial in-depth semi-structured evaluation interviews with patients with High Grade Glioma. Study three undertook interviews with the consulting HGG and CRC clinicians. Framework analysis was undertaken.

Setting: Two oncology settings within a tertiary cancer centre in Scotland.

Participants: 132 patients with colorectal cancer (65 intervention, 67 control) participated in the randomised controlled trial. For the qualitative study, 17 colorectal trial participants (8 intervention, 9 control), 11 high grade glioma patients and 7 clinicians were interviewed.

Evaluation Results: No significant difference was found between the control and Navigation intervention participants over time in the primary outcome of decision self-efficacy, or in the following secondary outcomes; decision conflict or anxiety and depression scores. At follow-up, the intervention group reported significantly less decision regret than the controls (p=0.039). In the qualitative data, Navigated participants reported being well prepared for medical consultations, able to actively engage in information exchange during consultation and enabled to recall and understand information provided. This was in contrast to participants receiving usual care who described being less prepared for medical consultations and experienced barriers to gathering information, such as time pressures, forgetting questions, and gaps in understanding. Clinicians identified that patients benefitted from preparing for, and having a written summary of, the consultation. Whereas neuro-oncology clinicians were supportive of Navigation as a tool to tailor information to patients; colorectal clinicians felt Navigation was a disruption to their normal consultation routine. Concern was expressed regarding the extra resource required by Navigated patients and therefore about the feasibility and sustainability of the intervention.

Conclusions: Whilst models of shared decision making remain highly profiled in cancer strategies, information exchange and use of interventions in context is problematic. This evaluation of Navigation has demonstrated more impact on the process of decision making, rather than outcome per se, and has raised questions about its sustainability in clinical practice. A more nuanced understanding of different cancer pathways and the specific decisions to be made, may inform a more targeted use of decision support in cancer care.
Date of Award2016
Original languageEnglish
Awarding Institution
  • Coventry University
SupervisorLouise Wallace (Supervisor) & Belinda Hacking (Supervisor)


  • Colorectal neoplasms
  • Disease management

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