Literature DB >> 11533423

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

J G Williams1, W Y Cheung, N Chetwynd, D R Cohen, S El-Sharkawi, I Finlay, B Lervy, M Longo, K Malinovszky.   

Abstract

OBJECTIVE: To evaluate the use of a multidisciplinary record held by patients with cancer in the community.
DESIGN: Pragmatic randomised controlled trial.
SETTING: The environs of Swansea in south west Wales. PARTICIPANTS: 501 patients under the care of the Department of Oncology, Singleton Hospital, Swansea. INTERVENTION: A 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.
RESULTS: 1148 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.
CONCLUSIONS: The 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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Year:  2001        PMID: 11533423      PMCID: PMC1743428          DOI: 10.1136/qhc.0100159..

Source DB:  PubMed          Journal:  Qual Health Care        ISSN: 0963-8172


  11 in total

1.  Randomised cross-over study of patient-held records in oncology and palliative care.

Authors:  I G Finlay; P Wyatt
Journal:  Lancet       Date:  1999-02-13       Impact factor: 79.321

Review 2.  The distribution of health care costs and their statistical analysis for economic evaluation.

Authors:  A Briggs; A Gray
Journal:  J Health Serv Res Policy       Date:  1998-10

3.  Use of an unstructured patient-held record in palliative care.

Authors:  I Finlay; N Jones; P Wyatt; J Neil
Journal:  Palliat Med       Date:  1998-09       Impact factor: 4.762

4.  Explanatory and pragmatic attitudes in therapeutical trials.

Authors:  D Schwartz; J Lellouch
Journal:  J Chronic Dis       Date:  1967-08

5.  Comparison of self-reported and medical record health care utilization measures.

Authors:  R O Roberts; E J Bergstralh; L Schmidt; S J Jacobsen
Journal:  J Clin Epidemiol       Date:  1996-09       Impact factor: 6.437

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

Authors:  M Drury; P Yudkin; J Harcourt; R Fitzpatrick; L Jones; C Alcock; M Minton
Journal:  Br J Gen Pract       Date:  2000-02       Impact factor: 5.386

7.  "Shuttle sheet": a patient-held medical record for pediatric oncology families.

Authors:  M M Stevens
Journal:  Med Pediatr Oncol       Date:  1992

8.  Patient access to records: expectations of hospital doctors and experiences of cancer patients.

Authors:  B Fisher; N Britten
Journal:  Br J Gen Pract       Date:  1993-02       Impact factor: 5.386

9.  Medical records: practicalities and principles of patient possession.

Authors:  M L Gilhooly; S M McGhee
Journal:  J Med Ethics       Date:  1991-09       Impact factor: 2.903

10.  A taxonomy of shared care for chronic disease.

Authors:  M Hickman; N Drummond; J Grimshaw
Journal:  J Public Health Med       Date:  1994-12
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  18 in total

1.  I am a good patient, believe it or not.

Authors:  Alejandro R Jadad; Carlos A Rizo; Murray W Enkin
Journal:  BMJ       Date:  2003-06-14

2.  Using conjoint analysis to model the preferences of different patient segments for attributes of patient-centered care.

Authors:  Charles E Cunningham; Ken Deal; Heather Rimas; Heather Campbell; Ann Russell; Jennifer Henderson; Anne Matheson; Blake Melnick
Journal:  Patient       Date:  2008-12-01       Impact factor: 3.883

Review 3.  Interventions for improving older patients' involvement in primary care episodes.

Authors:  R Wetzels; M Harmsen; C Van Weel; R Grol; M Wensing
Journal:  Cochrane Database Syst Rev       Date:  2007-01-24

4.  Patient perceptions of carrying their own health information: approaches towards responsibility and playing an active role in their own health - implications for a patient-held health file.

Authors:  Rowena Forsyth; Carol A Maddock; Rick A M Iedema; Marissa Lassere
Journal:  Health Expect       Date:  2010-12       Impact factor: 3.377

5.  Family practice enhancements for patients with severe mental illness.

Authors:  Patricia Pastore; Kim S Griswold; Gregory G Homish; Robert Watkins
Journal:  Community Ment Health J       Date:  2012-07-24

Review 6.  Populations and Interventions for Palliative and End-of-Life Care: A Systematic Review.

Authors:  Adam E Singer; Joy R Goebel; Yan S Kim; Sydney M Dy; Sangeeta C Ahluwalia; Megan Clifford; Elizabeth Dzeng; Claire E O'Hanlon; Aneesa Motala; Anne M Walling; Jaime Goldberg; Daniella Meeker; Claudia Ochotorena; Roberta Shanman; Mike Cui; Karl A Lorenz
Journal:  J Palliat Med       Date:  2016-08-17       Impact factor: 2.947

Review 7.  Does the patient-held record improve continuity and related outcomes in cancer care: a systematic review.

Authors:  Marjolein Gysels; Alison Richardson; Irene J Higginson
Journal:  Health Expect       Date:  2007-03       Impact factor: 3.377

Review 8.  Patients' views on the effectiveness of patient-held records: a systematic review and thematic synthesis of qualitative studies.

Authors:  Samantha A Sartain; Samantha Stressing; Jacqui Prieto
Journal:  Health Expect       Date:  2014-07-24       Impact factor: 3.377

Review 9.  The role of primary care in early detection and follow-up of cancer.

Authors:  Jon D Emery; Katie Shaw; Briony Williams; Danielle Mazza; Julia Fallon-Ferguson; Megan Varlow; Lyndal J Trevena
Journal:  Nat Rev Clin Oncol       Date:  2013-11-19       Impact factor: 66.675

10.  Challenges in multidisciplinary cancer care among general surgeons in Canada.

Authors:  Anna R Gagliardi; Frances C Wright; Dave Davis; Robin S McLeod; David R Urbach
Journal:  BMC Med Inform Decis Mak       Date:  2008-12-22       Impact factor: 2.796

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