Research project - PIPCaR

Participating in palliative care research irrespective of prognosis, performance or socioeconomic status.

This research project sought the views of patients who were admitted to hospices and specialist palliative care units (SPCUs) on whether they would consider being involved in different types of clinical research.

Palliative care needs to embrace research to guide service development and effective symptom management. But patients who receive care in hospices and SPCUs are rarely given the opportunity to participate in research.

This is partly because healthcare professionals worry that involvement in research studies would be too burdensome.

This study looked to establish the interest and preferences for involvement in research of patients in 3 specialist palliative care units across the North East.

100 patients at 2 NHS inpatient units and at St Oswald’s Hospice completed a short questionnaire.

Dr Katherine Frew, Consultant in Palliative Medicine in Northumbria Healthcare NHS Trust

Dr Felicity Dewhurst, Consultant in Palliative Medicine at St Oswald’s Hospice

Dr Joanna Elverson, Specialist Palliative Medicine Consultant at St Oswald’s Hospice

2021

Objective:

Palliative care needs to embrace research to guide service development and effective symptom management but healthcare professionals often feel research is too burdensome for patients who have poor performance status or are near the end of life. As a result, many studies exclude these groups from participating.

Aim:

This study aimed to identify whether specialist palliative care inpatients would wish to take part in research and whether preference varied according to study design, demographics, diagnosis, performance status and prognosis.

100 inpatients in two NHS specialist palliative care units and at St Oswald’s Hospice completed a short questionnaire about preferences for involvement in research.

92% of participants stated they were interested in being involved in research.

This was mostly unaffected by age, diagnosis, prognosis, performance and socioeconomic status.

Three-quarters of participants were within the last 3 months of life.

Simple questions or interviews were the preferred methodology, whereas only half of patients would want further investigations or additional medications.

Fewer still wanted to participate in online activities, lifestyle change or group activities.

The study concluded that palliative care inpatients welcome the opportunity to be involved in research and should not be excluded on the grounds of advanced disease, poor prognosis and low performance status.

The results will be used to inform healthcare professionals about the research patients may or may not be interested in, as well as enabling future research design to be supportive of patient preferences.

Read the published report below.

Read the report