HORIZONS Outcome Measures

Conceptual Framework

A selection of validated and study specific outcome measures are included and informed by the conceptual framework:
Figure 1: Conceptual framework for the HORIZONS Programme informed by Foster and Fenlon [1], May et al. [2] and Vassilev et al. [3] 

Areas investigation include:

  • Pre-existing factors: including age, gender, social circumstances, co-morbidities.
  • Cancer diagnosis and treatment (data collected from medical details).
  • Consequences of cancer diagnosis and treatment: including physical symptoms, psychological problems, social implications such as impact on social relationships and networks, practical implications (e.g. work-related problems, everyday chores, travel); perceived impact on everyday life including financial impact, and how this is experienced as burdensome to individuals.
  • Self-management of consequences and aftercare: self-management activities.
  • Personal factors: Individual characteristics such as resiliance and confidence to self-manage (self efficacy); perceived burden of treatment; perceived support and resources that individuals have in order to manage consequences for themselves.
  • Environmental factors: access to / utilisation of health and social care and other forms of support, including social support through family, friends, community, healthcare, social care, third sector and social networks
  • Health and well-being: quality of life, health status, personal well-being.
  • Life events

Matrix of Measures

A core set of measures will be administered to all participants at each assessment point. Additional measures and questions will be included at different time points including burden of treatment, co-morbidities, life events, lifestyle, social networks, and the use of health and social care services.
Questionnaires and CRFs are developed over the course of the programme.

All measures and questions assessed in our questionnaires are described here:



  1. Foster, C. & Fenlon, D. (2011). Recovery and self-management support following primary cancer treatment. Br J Cancer, 105(1), S21.
  2. May, C.R., May, C.R., Eton, D.T., Boehmer, K., Gallacher, K., Hunt, K., MacDonald, S., Mair, F.S., May, C.M., Montori, V.M., Richardson, A. & Rogers, A.E. (2014). Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14(1), 281.
  3. Vassilev, I., Rogers, A., Blickem, C., Brooks, H., Kapadia, D., Kennedy, A., Sanders, C., Kirk, S. & Reeves, D. (2013). Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities. PLoS One, 8(4), e59723.