Protocol for a mixed methods longitudinal enquiry into the impact of a community based supportive service for people affected by cancer

BMC Cancer. 2016 Sep 6;16(1):720. doi: 10.1186/s12885-016-2757-4.


Background: Globally, cancer rates are increasing. In Scotland, it is estimated that 2 in 5 people will develop cancer in their lifetime. Therefore, this is crucial time to provide personalised care and support to individuals affected by cancer. In response to this a community based supportive cancer service was launched in Glasgow, Scotland. The aim of this service is to proactively provide those affected by cancer with an assessment of their needs and personalised support where needed. To our knowledge, there is no other service like this in the United Kingdom.

Methods: The aim of this study is to understand if and how the service impacts upon the experiences and outcomes of people living with and affected by cancer. The study uses a sequential mixed methods design across a 5 year time point. Data gathering includes questionnaires, interviews, observations and reflective diaries. Participants include people affected by cancer who have used the service, a comparative sample who have not used the service, individuals who deliver the service and wider stakeholders. Outcomes include measures of patient activation, quality of life, health status, and social support. Data collection occurs at baseline, 2.5 years and 4 years with data from observations and reflective diaries supplemented throughout.

Discussion: This study evaluates an innovative community based cancer service. It focuses on impact and process issues relevant to a) the individuals in receipt of the service, b) the service providers, and c) the wider culture. As the programme evolves overtime, the research has been designed to draw out learning from the programme in order to support future commissioning both within Scotland and across the UK.

Keywords: Cancer; Community care; Health status; Holistic needs assessment; Link officer; Mixed methods; Patient activation; Quality of life; Social support.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Community Networks / organization & administration*
  • Humans
  • Longitudinal Studies
  • Neoplasms / prevention & control*
  • Prognosis
  • Quality of Life
  • Research Design / standards*
  • Scotland
  • Social Support*
  • Surveys and Questionnaires