Chronic Cancer

Evaluating the needs of patients living with chronic cancer: interviews and survey development

Integrating Patient Reported Outcomes into Clinical Practice

Project Title: Evaluating the needs of patients living with chronic cancer: interviews and survey development

Project Start Date: 1st June 2010 – Anticipated End Date: Closed for analysis inDecember 2013 for analysis and writing up.

UKCRN Number: 8983

Aim/ Objective

By engaging patients and health professionals through the proposed research we hope to achieve the following:

  • 1. Improve understanding of chronic cancer from the perspective of patients and health professionals.
  • 2. Develop and validate a patient survey to evaluate patient needs and experiences

Method

The aims will be achieved over two phases: Phase 1: Understanding Advanced Cancer and Developing Survey Items Patient Interviews: 80 patients will be invited to interview to discuss experiences and needs of living with chronic cancer. Health Professional Interviews: 8 health professionals will be invited to interview to discuss their experiences of working with patients with chronic cancer. Item Development: Themes and issues from the interviews will be used to conduct a literature review of existing items. Item bank will be developed from existing items and adapting themes from interviews. (No participants, developmental work only) Expert Interviews: Review of item bank review will be carried out by 10 patients and 8 health professionals to evaluate face validity of item bank and identify missing areas. Expert Focus Groups/Feedback: In small groups, 10 patients and 8 health professionals will review and discuss individual item inclusion using a process of review similar to the Delphi Technique Outcome: Final items selected for inclusion in the patient survey Phase 2: Developing, Validating, and Evaluating Survey Pilot survey: The first survey will be administered to 75 patients. Response data will be used to evaluate item contributions and revise item inclusion. Respondents will also complete a survey feedback form and data will be used to assist item review. Revised survey: Refined survey will be administered to approximately 250 patients. Response data will be used to evaluate reliability, validity, and measurement properties of the survey.

The Team

Principal Investigator: Clare Harley

Research Assistant: Simon Pini