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

Objectives: To assess the effectiveness of the patient-held record (PHR) in cancer care. Background: Patients with cancer may receive care from different services resulting in gaps. A PHR could provide continuity and patient involvement in care. Search strategy: Relevant literature was identified through five electronic databases (Medline, Embase, Cinahl, CCTR and CDSR) and hand searches. Inclusion criteria: Patient-held records in cancer care with the purpose of improving communication and information exchange between and within different levels of care and to promote continuity of care and patients' involvement in their own care. Data extraction and synthesis: Data extraction recorded characteristics of intervention, type of study and factors that contributed to methodological quality of individual studies. Data were then contrasted by setting, objectives, population, study design, outcome measures and changes in outcome, including knowledge, satisfaction, anxiety and depression. Methodological quality of randomized control trials and non-experimental studies were assessed with separate standard grading scales. Main results and conclusions: Seven randomized control trials and six non-experimental studies were identified. Evaluations of the PHR have reached equivocal findings. Randomized trials found an absence of effect, non-experimental evaluations shed light on the conditions for its successful use. Most patients welcomed introduction of a PHR. Main problems related to its suitability for different patient groups and the lack of agreement between patients and health professionals regarding its function. Further research is required to determine the conditions under which the PHR can realize its potential as a tool to promote continuity of care and patient participation.