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Palliative care inpatients favour research participation irrespective of prognosis, performance or socioeconomic status: multicentre cohort study
  1. Felicity Dewhurst1,2,
  2. Donna Wakefield1,3,
  3. Joanna Elverson2,4,
  4. Robert McConnell5,
  5. Charlotte Bryan6,
  6. Helena Spriggs5,
  7. Kate Atkinson5 and
  8. Katherine Frew6
  1. 1Population Health Sciences, Newcastle University, Newcastle upon Tyne, UK
  2. 2St Oswald's Hospice, Newcastle upon Tyne, UK
  3. 3Specialist Palliative Care Team, North Tees and Hartlepool NHS Foundation Trust, Stockton-on-Tees, UK
  4. 4Specialist Palliative Care Team, Newcastle upon Tyne Hospitals NHS Trust, Newcastle upon Tyne, UK
  5. 5Health Education North East, Newcastle upon Tyne, UK
  6. 6Specialist Palliative Care Team, Northumbria Healthcare NHS Foundation Trust, North Shields, UK
  1. Correspondence to Dr Donna Wakefield, Specialist Palliative Care Team, North Tees and Hartlepool NHS Foundation Trust, TS19 8PE, Stockton-Upon-Tees, UK; donna.wakefield1{at}


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

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

Methods 100 inpatients in two National Health Service specialist palliative care units and one independent hospice in the Northeast of England completed a short questionnaire about preferences for involvement in research.

Results 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 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 and fewer still wanted to participate in online activities, lifestyle change or group activities.

Conclusions 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.

  • Cancer
  • Chronic conditions
  • Clinical decisions
  • Communication
  • Hospice care
  • Methodological research

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  • FD and DW are joint first authors.

  • Twitter @DonnaWakefield_

  • FD and DW contributed equally.

  • Contributors The authors (DW, FD, JE, RM, CB, HS, KA, KF) all contributed to the study and agree to the final version of the manuscript submitted.

  • Funding The administration of this study was supported with £1000, kindly received from the charity, Hadrian Trust.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.