• Qual Health Care · Sep 2001

    Randomized Controlled Trial Clinical Trial

    Pragmatic randomised trial to evaluate the use of patient held records for the continuing care of patients with cancer.

    • J G Williams, W Y Cheung, N Chetwynd, D R Cohen, S El-Sharkawi, I Finlay, B Lervy, M Longo, and K Malinovszky.
    • School of Postgraduate Studies in Medical & Health Care, University of Wales, Swansea SA2 8PP, UK. j.g.williams@swan.ac.uk
    • Qual Health Care. 2001 Sep 1;10(3):159-65.

    ObjectiveTo evaluate the use of a multidisciplinary record held by patients with cancer in the community.DesignPragmatic randomised controlled trial.SettingThe environs of Swansea in south west Wales.Participants501 patients under the care of the Department of Oncology, Singleton Hospital, Swansea.InterventionA patient held record used by the patient and healthcare professionals. Main outcome measures-Health related quality of life (EORTC QLQ-C30) measured at entry into the study and at 6 months; patients' views at 6 months; healthcare professionals' views collected after the completion of patient follow up; NHS resource and booklet use.Results1148 patients were eligible for the study; 501 were recruited (44%) and 344 completed the study (172 in each group). There was no significant difference between the two groups in change in quality of life or NHS resource use. The patient held record did not have an impact on communication but was significantly helpful to patients in preparing for appointments, reducing difficulties in monitoring their own progress, and helping them to feel more in control (p<0.05). Fifty three percent of patients would have preferred not to have a patient held record. There was a low level of use of the record by healthcare professionals but most of those who remembered using it indicated that they would prefer patients to have it.ConclusionsThe patient held record is valued by some patients and professionals but has no significant impact on the quality of life of patients or NHS resource use. It has a positive impact on quality by helping patients feel more in control and prepare for meetings with healthcare staff. Patients who find it useful tend to be younger and have more professionals involved in their care. It is recommended that it should be made available to patients on request and used by them according to need.

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