Originally published as JCO Early Release 10.1200/JCO.2008.17.5687 on November 24 2008

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Does a Patient-Held Quality-of-Life Diary Benefit Patients With Inoperable Lung Cancer?

Moyra E. Mills, Liam J. Murray, Brian T. Johnston, Chris Cardwell, Michael Donnelly

From the Cancer Epidemiology and Prevention Research Group, Queen's University; and Royal Group of Hospitals, Belfast, United Kingdom

Corresponding author: Moyra Mills, PhD, Cancer Epidemiology and Prevention Research Group, Centre for Clinical and Population Sciences, Mulhouse Bldg, RGH Site, Grosvenor Rd, Belfast BT12 6BJ, United Kingdom; e-mail: mmills05{at}qub.ac.uk

Purpose To examine the effect of weekly completion of a patient-held quality-of-life (QOL) diary in routine oncology practice for palliative care patients.

Patients and Methods In a pragmatic randomized controlled trial, 115 patients with inoperable lung cancer were randomly assigned to receive either standard care or a structured QOL diary (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 and the related lung cancer module LC13) that they completed at home each week for 16 weeks. Patients were encouraged to share the QOL information with health professionals involved in their care. Changes in QOL over time (measured by the Functional Assessment of Cancer Therapy–Lung questionnaire and the Palliative Care Quality of Life Index), discussion of patient problems, and satisfaction with communication and general care were assessed at baseline and at 2 and 4 months after baseline.

Results Analysis of QOL indicated a small but consistent difference between patients in the diary group and the standard care group. The diary group had a poorer QOL in many domains. Two different QOL summary scores (total and overall QOL) indicated a statistically significant between-group difference. No effects were found in relation to satisfaction with care, communication, or the discussion of patient problems.

Conclusion The regular completion of a QOL questionnaire without appropriate feedback to health care professionals and without the provision of appropriate support may have a negative impact on inoperable lung cancer patients. Further research should focus on identifying features such as feedback loops that are required for the successful and meaningful use of QOL questionnaires in routine patient care.

published online ahead of print at www.jco.org on November 24, 2008.

Supported by a 3-year PhD fellowship from the Northern Ireland Research and Development Office.

Presented in part at the 2007 National Cancer Research Institute Cancer Conference, September 30-October 3, 2007, Birmingham, United Kingdom.

Trial Registration: International Standard Randomised Controlled Trial N58789949.

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

Clinical trial information can be found for the following: ISRCTN58789949 [controlled-trials.com] .

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