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

Abstract

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.

Patient-Held Maternal and/or Child Health Records: Meeting the Information Needs of Patients and Healthcare Providers?

“…Results in these studies were variable. The six positive outcomes were qualitative assessments of patient benefit [78–83]. One of the two studies with negative results reports less satisfied patients, and the other reports a potential imbalance of power relationship [81, 82].…”

“…In total, 48 studies were listed in the six categories of type of patient-held record: (maternal and/or child or not,) care provider or patient most influenced/effected, and research done in developed or developing country. Nine (one study in two categories) of the studies are felt to have mixed results [59, 68, 69, 76 (twice), 81–83, 96, 103], and six of the studies are felt to concern both patient and care provider [61, 63, 68, 69, 76, 81]. Of these results, 37 show positive effects or influences, 24 show neutral effects or influences, while only five studies show negative effects or influences produced with use of a patient-held health care record.…”

Does the patient‐held record improve continuity and related outcomes in cancer care: a systematic review

“…We identified seven RCTs: one from the Netherlands, 12 one from Canada, 4 and five from the UK. 1,7,[13][14][15] We found three observational studies [16][17][18] and two qualitative evaluations, 19,20 all undertaken in the UK, and a survey evaluation from Sweden. 21…”

Building a shared patient record for breast cancer management: a French Delphi study

“…Evidence is also expected from a pragmatic French randomized controlled trial currently in progress (the Archimed study) that aims to field-test the practical use of the model for the patient-held record designed through our study, as well as its possible positive and negative impact, in the routine management of breast cancer patients. If it is well accepted and used properly, at least for some categories of patients to be identified, the record may lower patient anxiety and depression and consequently enhance quality of life, through better patient information (Fallowfield et al 1994), and limit repeated procedures through better coordination of care (Williams et al 2001). The record may improve the quality of cancer and follow-up care by better informing primary healthcare professionals on possible immediate and long-term side effects of treatments (Burstein & Winer 2000), and by better informing cancer specialists on any comorbidity (Extermann 2007).…”

“…Direct communication of this information by the physician can be complemented by other media such as audio tapes, prompt sheets or telephone calls (Tattersall & Butow 2002;Beaver et al 2006). Patient-held paper records also can help to overcome communication barriers between physicians and patients (Lecouturier et al 2002;Santoso et al 2006) and facilitate greater patient involvement in care (Drury et al 2000;Williams et al 2001).…”