Cancer Information Your Way: Get What You Need to Make Your Decisions

Cancer Information Your Way: Get What You Need to Make Your Decisions - a Qualitative Study of Decision Making by Patients With Lower Health Literacy Receiving Care for Incurable Cancer

People diagnosed with cancer may face many difficult decisions regarding their care and preferences. This may be particularly challenging when the cancer cannot be cured. It is therefore hugely important that patients have the information they need so that they can be involved in these decisions and in their care.

This qualitative interview study aims to hear from patients who might have found that the information they were given wasn't easy to understand, or who haven't been able to get involved in their care as much as they would have liked. We hope to learn from these experiences in order to improve the way patients are given information and supported to become involved in their care.

Study Overview

• Status: Completed
• Conditions: Cancer

Detailed Description

Participants will be identified by healthcare professionals and invited to take part in a single interview either by phone or video call, lasting around an hour.

Interviews will be semi-structured and follow a topic guide, exploring how participants have been given information, how decisions have been made, and any particular challenges they may have faced.

Consent will also be sought for collection of demographic and disease data from the participant's medical record

• Study Type: Observational
• Enrollment (Actual): 21

Contacts and Locations

Study Locations

• United Kingdom
  • Dorset
    • Poole, Dorset, United Kingdom
      • Poole Hospital

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Patients diagnosed with incurable malignancy of any site, identified by their healthcare professionals as potentially having difficulties with health literacy

Description

Inclusion criteria:

• Diagnosis of incurable malignancy of any site (as identified by their treating oncologist and may be characterised by eligibility for or receipt of treatment with palliative intent)
• Identified by a member of the healthcare team as potentially having difficulties with health literacy
• Capacity to provide informed consent
• English as the main language

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Semi-structured interviews	To explore how best to support decision making by patients with lower health literacy receiving care for incurable cancer, acknowledging the implications COVID-19 will have for future care delivery.	1 year

Collaborators and Investigators

• Sponsor: University of Southampton
• Investigators: Principal Investigator: Chloe E Holden, MBBCh, Poole Hospital

Study record dates

Study Major Dates

• Study Start (Actual): November 12, 2020
• Primary Completion (Actual): November 30, 2021
• Study Completion (Actual): November 30, 2021

Study Registration Dates

• First Submitted: October 15, 2020
• First Submitted That Met QC Criteria: October 15, 2020
• First Posted (Actual): October 19, 2020

Study Record Updates

• Last Update Posted (Actual): July 20, 2022
• Last Update Submitted That Met QC Criteria: July 19, 2022
• Last Verified: July 1, 2022

More Information

Terms related to this study

• Keywords: Health literacy
• Other Study ID Numbers: 60486

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No