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A Study of Patients' Experiences of Treatments (ASPECTS)

The following people are involved with this project:

More about this project

ASPECTS is a study of patients' experiences of palliative chemotherapy treatments. Using qualitative research methods, the views and experiences of 50 patients, their partners or carers, and clinicians will be considered at key stages of the treatment process. The two-year study began in October 2005 and is funded by Cancer Research UK.

Purpose

Each year in the UK many thousands of patients with cancer will have to decide about having palliative chemotherapy. Because the survival benefits are modest and the toxicities significant , the decision may be extremely difficult. Making the right choice to undergo treatment is important and current UK health policy encourages patients to be involved in thi s decision. Both patients and doctors need to be fully aware of the merits of chemotherapy in order to make a decision.

Most patients undergoing palliative chemotherapy do so as outpatients precluding health professionals from witnessing most of what they experience. Although quantitative data about symptom relief, toxic side effects and quality of life are routinely collected in trials of palliative chemotherapy regimens there is a paucity of qualitative research exploring, in an open-ended way, how patients experience this form of treatment.

The primary purpose of this research is to use qualitative research methods to describe, comprehensively, patients' experiences of palliative chemotherapy. A second aim is to explore the ways in which information about patients' experiences of palliative chemotherapy is included in the process surrounding treatment decision-making and to consider ways in which this might be improved.

Study design

The ASPECTS study has three main components:

  1. Longitudinal patient component - a cohort of 50 cancer patients with three relatively common cancers - pancreatic cancer, non-small cell lung cancer and colorectal cancer - will be followed from the oncology appointment where palliative chemotherapy is discussed with the patient, to the decision to undergo treatment, on throughout the palliative chemotherapy treatment to the point where treatment is stopped. The patient interview topic guide will vary according to where they are in the treatment process but in general it will include: reasons for choosing or not choosing palliative chemotherapy; the process by which decisions about palliative chemotherapy were arrived at; understandings of the purpose of the palliative chemotherapy; if they have received palliative chemotherapy how it has impacted on their lives and those around them; and thoughts about what is most important to them at this stage in their life and the ways in which the health services can best support them and their families.
  2. Partners or carers component - a minimum of 15 in-depth interviews will be conducted with partners or carers of cancer patients in the cohort study. The topics covered will be similar to those included in patient interviews.
  3. Clinician component - Consultations with patients in the cohort will be observed and digitally recorded by the researcher. In-depth interviews with be undertaken with a minimum of 15 health care professionals. These will be selected from oncologists involved in clinical decisions with patients receiving palliative chemotherapy, palliative care physicians and specialist nurses involved in ongoing care of patients undergoing palliative chemotherapy. The list of topics to be included in the interview will include, for example: reasons for advocating or not advocating palliative chemotherapy; understandings of what palliative chemotherapy can and cannot achieve for patients; what they think constitute good and bad patient responses to palliative chemotherapy and in what ways does this differ from or is similar to chemotherapy for curative purposes; what advice physicians give to patients about palliative chemotherapy; and thoughts about what they think is most important to terminally ill patients.

Outputs and dissemination

In addition to publishing the findings of this work in international peer-reviewed journals, and presenting the work at national and international conferences, we intend that this research be used to inform professionals involved in decision-making about palliative chemotherapy treatment. Depending on the findings, we anticipate that this might include development of a tool to be used to aid good decision-making.

We also plan to translate the findings into a form that could help to inform patients faced with making a choice about palliative chemotherapy. Any decision-making tool or patient information would be subjected to rigorous evaluation for which other research funding would be sought.

Although not a specific goal of this research, the findings may assist the further development of the health-related quality of life measurement tools used to assess the effectiveness of different palliative chemotherapy regimens.

In addition, appropriate findings will be used in the department's teaching programme.

Project dates
15 Oct 2005 - 15 Oct 2007
Project director(s):
Rona Campbell
Jane Blazeby
Project funder:
Cancer Research UK
Project collaborator(s):
United Bristol Health Care Trust (UBHT)
Bristol Haematology and Oncology Centre (BH&OC)
Weston Area Health Authority (WAHT)
Contact:
Rona Campbell
rona.campbell@bristol.ac.uk