Logo of brjgenpracRCGP homepageJ R Coll Gen Pract at PubMed CentralBJGP at RCGPBJGP at RCGP
Br J Gen Pract. 2000 Feb; 50(451): 105–110.
PMCID: PMC1313626

Patients with cancer holding their own records: a randomised controlled trial.


BACKGROUND: The burden of cancer care in general practice is increasing. Patient-held records may facilitate effective, coordinated care, but no randomised controlled trials of their use in cancer care have been conducted, and concerns about possible negative effects remain. AIM: To evaluate the use of a supplementary patient-held record in cancer care. METHOD: Six hundred and fifty radiotherapy outpatients with any form of cancer were randomised either to hold a supplementary record or to receive normal care. It was explained to record holders that the supplementary record was intended to improve communication with health professionals and act as an aide memoire. After three months, patients' satisfaction with communication and with participation in their own care were assessed. Global health status, emotional functioning, and cognitive functioning were measured using the European Organization for Research and Treatment of Cancer QLQ-C30 questionnaire. RESULTS: There were no significant differences between groups in any of the outcome measures. Patients in both groups expressed a high level of satisfaction with communication and participation in their care. Mean (SD) scores in the intervention and control groups were: global health status, 66.8 (24.2) and 65.3 (23.7); emotional functioning, 75.0 (24.6) and 77.4 (22.8); cognitive functioning, 84.5 (21.0) and 84.0 (21.3). CONCLUSION: A supplementary patient-held record for radiotherapy outpatients appears to have no effect on satisfaction with communication, participation in care, or quality of life.

Full Text

The Full Text of this article is available as a PDF (53K).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.
  • Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med. 1980 Jun;92(6):832–836. [PubMed]
  • Derdiarian AK. Informational needs of recently diagnosed cancer patients. Nurs Res. 1986 Sep-Oct;35(5):276–281. [PubMed]
  • Blanchard CG, Labrecque MS, Ruckdeschel JC, Blanchard EB. Information and decision-making preferences of hospitalized adult cancer patients. Soc Sci Med. 1988;27(11):1139–1145. [PubMed]
  • Meredith C, Symonds P, Webster L, Lamont D, Pyper E, Gillis CR, Fallowfield L. Information needs of cancer patients in west Scotland: cross sectional survey of patients' views. BMJ. 1996 Sep 21;313(7059):724–726. [PMC free article] [PubMed]
  • Fallowfield L. Giving sad and bad news. Lancet. 1993 Feb 20;341(8843):476–478. [PubMed]
  • Seale C. Communication and awareness about death: a study of a random sample of dying people. Soc Sci Med. 1991;32(8):943–952. [PubMed]
  • Higginson I, Wade A, McCarthy M. Palliative care: views of patients and their families. BMJ. 1990 Aug 4;301(6746):277–281. [PMC free article] [PubMed]
  • Robinson L, Stacy R. Palliative care in the community: setting practice guidelines for primary care teams. Br J Gen Pract. 1994 Oct;44(387):461–464. [PMC free article] [PubMed]
  • Elbourne D, Richardson M, Chalmers I, Waterhouse I, Holt E. The Newbury Maternity Care Study: a randomized controlled trial to assess a policy of women holding their own obstetric records. Br J Obstet Gynaecol. 1987 Jul;94(7):612–619. [PubMed]
  • Lovell A, Zander LI, James CE, Foot S, Swan AV, Reynolds A. The St. Thomas's Hospital maternity case notes study: a randomised controlled trial to assess the effects of giving expectant mothers their own maternity case notes. Paediatr Perinat Epidemiol. 1987 Apr;1(1):57–66. [PubMed]
  • Livaniou E, Mihelic M, Evangelatos GP, Haritos A, Voelter W. A thymosin beta 4 ELISA using an antibody against the N terminal fragment thymosin beta 4 [1-14]. J Immunol Methods. 1992 Apr 8;148(1-2):9–14. [PubMed]
  • Saffin K, Macfarlane A. How well are parent held records kept and completed? Br J Gen Pract. 1991 Jun;41(347):249–251. [PMC free article] [PubMed]
  • Baldry M, Cheal C, Fisher B, Gillett M, Huet V. Giving patients their own records in general practice: experience of patients and staff. Br Med J (Clin Res Ed) 1986 Mar 1;292(6520):596–598. [PMC free article] [PubMed]
  • Gilhooly ML, McGhee SM. Medical records: practicalities and principles of patient possession. J Med Ethics. 1991 Sep;17(3):138–143. [PMC free article] [PubMed]
  • Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993 Mar 3;85(5):365–376. [PubMed]
  • Latimer EJ, Porterfield P, Roberts JG. A patient care travelling record for palliative care: a feasibility study. J Palliat Care. 1991 Summer;7(2):30–36. [PubMed]

Articles from The British Journal of General Practice are provided here courtesy of Royal College of General Practitioners


Save items

Related citations in PubMed

See reviews...See all...

Cited by other articles in PMC

See all...


  • Cited in Books
    Cited in Books
    PubMed Central articles cited in books
  • MedGen
    Related information in MedGen
  • PubMed
    PubMed citations for these articles

Recent Activity

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

See more...