Background Patient held records need to be evaluated in palliative care settings.
Objectives To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers.
Methods A mixed methods prospective longitudinal cohort study in the UK—adult patients under community specialist palliative care nurse review or attending day hospice were given questionnaires at record introduction and after 4–6 weeks. Hospice staff completed a questionnaire and focus group after 8 months.
Results From Sept 2016 to June 2017, 550 patients were screened, 347 (63.1%) were offered records and 259 accepted (74.6%). 238 accepted a research pack, 105 returned questionnaire 1 (44.1% response rate) and 26 returned questionnaire 2 (24.8% of initial respondents). Questionnaire 1 (patients): 40% found it burdensome repeating information, and almost 70% were interested in a record to reduce this. Questionnaire 2 (patients): 74% found the record easy to use, but few (4, 15.4%) used it regularly. Over 60% stated the record was useful and would recommend it to others, despite not using it themselves. Professionals indicated that it was mainly patients and relatives who used the record, not non-palliative professionals.
Conclusions While initial uptake of the record was high, use appeared low. While people saw real value in the record for others, they did not generally use it themselves. This evaluation demonstrates that patient held records are unlikely to be used by palliative care patients even though they see value in the concept.
- patient held record
- medical records/standards
- health records, personal
- mixed methods longitudinal cohort
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Contributors CW: all aspects of the study, drafting the article. JS: focus group facilitation and analysis, review of the article. PB: protocol design, review of the article. MW: all aspects of protocol and passport design, revision of the article. All authors have approved the version to be published.
Funding This research was funded by a grant from Belfast Charitable Society who had no influence on study design, interpretation of results or write up.
Competing interests MW was involved in the design of the passport, but did not receive any financial incentive for this. Other authors have no competing interests to declare.
Ethics approval Ethical approval was obtained from the Office of Research Ethics Committees Northern Ireland (ORECNI) (REC 16/NI/0009, IRAS 185537, 22.01.16).
Provenance and peer review Not commissioned; internally peer reviewed.
Data sharing statement Data can be obtained at request from the corresponding author.
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