Short summary

Aim: The overall aim of the research project is, through a feasibility study of using a patient-reported outcome (PRO) questionnaire for palliative care, to improve the basic palliative care to people with life threatening diseases. The project is collecting research data following a feasibility test conducted under the auspices of the Danish Health Data Authority, which takes place in hospitals, municipalities and at REHPA, the National Knowledge Centre for Rehabilitation and Palliative Care.

Rationale

The Danish Health Data Authority has developed questionnaires for collecting patient-reported outcomes (PRO) in e.g. rehabilitation and diabetes care, and has through the past years developed a PRO questionnaire for palliative care, aimed at the basic palliative level - that is, organizations that do not work with palliative care as a main task.

The PRO questionnaire for palliative care was developed in a national setting by a clinical coordination group under the auspices of the Danish Health Data Authority. The questionnaire was developed for use among people with a life threatening cancer-, heart-, lung- or kidney disease.

The overall aim of the present research project is, through a feasibility study of using the PRO-questionnaire for palliative care, to improve the basic palliative care to people with life threatening diseases. The project is collecting research data following a feasibility test conducted under the auspices of the Danish Health Data Authority, which takes place in hospitals, municipalities and at REHPA, the National Knowledge Centre for Rehabilitation and Palliative Care.

Description of the cohort

Patients with advanced life-threatening diseases from: cardiology, pulmonary medicine, oncological, nephrological, surgical and medical hospital departments and municipalities.

Data and biological material

Data will be both quantitative and qualitative. PRO-data and evaluation data will be collected from approx. 50 patients/citizens pr. hospital/municipality; approx. two individual patient interviews pr. hospital/municipality; and evaluation questionnaires and workshops (group interviews) with relevant professionals from each site.

Collaborating researchers and departments

the Department of Pulmonary Medicine and the Department of Cardiology, Bispebjerg and Frederiksberg Hospital

• • Marie Albrectsen Paine marie.albrectsen.paine.01@regionh.dk Anette Agerholm anette.agerholm.01@regionh.dk ,Søsserr Lone Smilla Grimshaw-Aagaard soesserr.lone.smilla.grimshaw-aagaard@regionh.dk

Department of Pulmonary Medicine and Infectious Diseases, Nordsjællands Hospital

• Camilla Charlotte Lykke camilla.charlotte.lykke.01@regionh.dk, Maria Omel Jellington Maria.Omel.Jellington@regionh.dk

Department of Nephrology, Herlev and Hvidovre Hospital

• Pamela Nørgaard pamela.noergaard.01@regionh.dk Elizabeth Krarup elizabeth.krarup@regionh.dk, Charlotte Gro Kinnunen Charlotte.Gro.Kinnunen@regionh.dk

Surgical and possibly Medical department, Holbæk Hospital

• Heidi Maria Bergenholtz hbz@regionsjaelland.dk

Lung diseases department, Lillebælt Hospital

• Anders Løkke Anders.Lokke@rsyd.dk , Edina Nikolett Barna Edina.Nikolett.Barna@rsyd.dk

Holbæk Municipality

• Mikael Skytte msky@holb.dk

Palliative Research Unit, Bispebjerg and Frederiksberg Hospital

• Mogens Grønvold Mogens.Groenvold@regionh.dk, Maiken Bang Hansen Maiken.Bang.Hansen@regionh.dk

REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care

• Mette Raunkiær Mette.Raunkiaer@rsyd.dk, Cecilie Lindström Egholm Cecilie.Lindstrom.Egholm@rsyd.dk