Table 1 Ambulatory and Home Care Record (AHCR) adaptations made for a UK population

Home visits, health care only

Home visits, health and social care

Most healthcare visits are paid for by public funds; social care is usually free at end-of-life if deemed medically necessary (otherwise means tested).

Length of home visits

Removed

Prior experience of research team indicated this would be poorly reported and because nationally validated data are available.^a

Payment for home visits and reimbursement received

Removed

Prior experience of research team indicated this would be poorly reported and unlikely to be relevant since palliative care costs are covered free of charge by the National Health Service and voluntary sector.

Phone calls to palliative team only

Phone calls to any health and social service, not just palliative care team

Greater variability in local services in the UK; palliative care patients use the whole system of health and social care.

Questions about medications and costs

One generic question about whether exempt from prescription costs

People over 60 years and/or at a palliative stage (medical exemption) do not pay for items obtained on prescription in UK.

New question

Whether carer received Carer’s Allowance

Carer’s Allowance is a benefit available in UK.

New question

Whether services met (or fell short or exceeded expectations) was added

The pilot was being conducted in the context of the roll out of a new telephone navigation service and satisfaction with services was of interest to the provider.

Language and terminology

Minor changes, e.g. use of A&E instead of ER

To customise language and terminology to UK.