Afprøvning af ”Spørgeskemaet om hvordan du har det” – et PRO Palliationsredskab
Projektets overordnede formål er at forbedre den basale palliative indsats til mennesker med livstruende sygdomme ved hjælp af pilottest af ”Spørgeskemaet om hvordan du har det” – et PRO Palliationsredskab.
Metode
Projektet er et feasibility-studie, der gennemføres i forbindelse med Sundhedsdatastyrelsens (SDS) evaluering af pilottest af PRO Palliation ultimo 2021-2022. Dataindsamlingen følger således SDS’ model for evaluering, men foregår i tæt samarbejde med nærværende forskningsprojekt for at sikre, at data også kan anvendes i forskningssammenhæng.
Datamaterialet vil bestå af kvalitative og kvantitative data:
- PRO-data
- Evalueringsskemaer fra patienter
- Telefoninterviews med patienter
- Evalueringsskemaer fra professionelle
- Workshops med professionelle.
REHPA har oprettet og står for en fælles REDCap forskningsbase under OPEN, Open Patient data Explorative Network, Odense Universitetshospital.
Formidling
Videnskabelige artikler
Hansen MB, Grønvold M, Raunkiær M, Mikkelsen TB, Rojas-Concha L, Lindstrom Egholm C. Differences in symptoms and problems experienced by patients with life threatening disease in specialized palliative care and basic palliative care – a nationwide cross-sectional study. Supportive Care in Cancer 2025;33:1017. https://doi.org/10.1007/s00520-025-10071-1
Ikander T, Bergenholtz H, Sørensen HD, Paine MA, Skytte M, Refer I, Harder E, Raunkiær M, Egholm C. Healthcare professionals’ experiences in using a patient-reported outcome tool (PRO-Pall) to identify symptoms and problems in palliative care: A mixed methods study. Palliative and Supportive Care 2025;23:e159, 1-8. https://doi.org/10.1017/S1478951525000483.
Pedersen, T., Groenvold, M., Lykke, C., Løkke, A., Barna, E. N., Lindström Egholm, C., … Hansen, M. B. (2025). Comparing patient reported palliative symptoms and problems among kidney, heart, lung and cancer patients – An initial investigation. Progress in Palliative Care, 1–11. https://doi.org/10.1080/09699260.2025.2524229
Shabnam, J., Raunkiær, M., Hansen, M.B. et al. Patients’ experiences of responding to a Patient-Reported Outcome Measure for palliative care: a mixed method study. Qual Life Res (2025). https://doi.org/10.1007/s11136-025-04006-w
Darum Sørensen, H., Egholm, C. L., Løkke, A., Barna, E. N., Hougaard, M. S., Raunkiær, M., & Farver-Vestergaard, I. (2024). Using a Patient-Reported Outcome Measure to Assess Physical, Psychosocial, and Existential Issues in COPD: A Danish outpatient study using the PRO-Pall instrument. Journal of Clinical Medicine, 13(20), 6200. https://doi.org/10.3390/jcm13206200
Rapport
Evaluering af pilotafprøvning af PRO til basal palliation
I evalueringsrapporten præsenteres resultaterne fra pilotafprøvningen af PRO spørgeskemaet til basal palliation (herefter PRO Palliation-spørgeskemaet) udviklet af en klinisk koordinationsgruppe i regi af Sundhedsdatastyrelsen. PRO Palliation-spørgeskemaet blev udviklet for mennesker med livstruende kræft-, lunge-, hjerte- og nyresygdomme med hovedformål at screene for palliative behov indenfor palliation på basalt niveau. Sekundære formål var, at skemaet skulle bidrage til dialogstøtte og bedre behandling.
Forfattere: Ida Fritsdal Refer, Tina Broby Mikkelsen, Elise Harder Christensen, Viktoria Nadarajah, Mette Raunkiær og Cecilie Lindström Egholm
Målgruppe: Sundhedsprofessionelle der arbejder med patienter med kræft, KOL samt nyresygdom og i mindre grad med hjertepatienter og plejehjemsbeboere.
Udgivet: December 2022
Posters/abstracts
Hansen MB, Grønvold M, Raunkiær M, Mikkelsen TB, Rojas-Concha L, Lindstrom Egholm C. Differences in symptoms and problems experienced by patients with life threatening disease in specialized palliative care and basic palliative care – a nationwide cross-sectional study. Accepted for presentation at the 20th world congress of the European Association for Palliative Care (EAPC), Prague, Czechia, 14-16 May 2026.
Lindstrom Egholm C, Ikander T, Refer I, Pedersen SG, Wind-Bauer N, Lykke C, Bergenholtz H. Implementation of a national PROM for general palliative care – experiences from a feasibility trial. Oral presentation at the ISOQOL Conference, Cologne, Germany, October 13-16, 2024. Published in: Quality of Life Research 2024;33:S85.
Pedersen, T, Groenvold M, Lykke C, Løkke A, Barna EN, Lindström Egholm C, Mikkelsen TB, Raunkiær M, Shabnam J, Hansen MB. Basic palliative care needs among cancer, kidney, heart and lung patients. European Association for Palliative Care (EAPC) Research Conference in Barcelona, Spain, 16-18 May 2024
Sørensen HD, Lindstrom Egholm C, Løkke A, Barna EN, Raunkiær M, Farver-Christensen I. Palliative care needs in outpatients with COPD assessed by a holistic patient-reported outcome measure. European Association for Palliative Care (EAPC) Research Conference in Barcelona, Spain, 16-18 May 2024
Ikander T, Bergenholtz H, Sørensen HD, Paine MA, Skytte M, Refer IF, Harder E, Raunkiær M, Egholm Lindstrom C. PRO can support identification of symptoms and problems as well as initiation of actions within general palliative care. Poster presentation at the Clinical Quality Conference 2024, Aalborg, October 2024.
Lindstrom Egholm C, Mikkelsen TB, Refer IF, Nadarajah V, Bergenholtz H, Grønvold M, Hansen MB, Skytte M, Lykke C, Paine M, Raunkiær M. Patients’ experiences using Patient Reported Outcome Measures in basic palliative care. Poster presentation at the European Association for Palliative Care (EAPC) conference, Rotterdam, Netherlands. June 2023.
Lindstrom Egholm C, Mikkelsen TB, Refer IF, Nadarajah V, Bergenholtz H, Dam-Schmidt U, Barna EN, Lykke C, Raunkiær M. Professionals’ experiences using Patient Reported Outcome Measures in basic palliative care. Poster presentation at the European Association for Palliative Care (EAPC) conference, Rotterdam, Netherlands. June 2023.
Lindstrom Egholm C, Refer IR, Christensen EH, Mikkelsen TB, Bergenholtz H, Raunkiær M. National PRO til basal palliation – implementeringserfaringer fra en pilotevaluering. Poster presentation v. Dansk Selskab for Kvalitet i Sundhedssektoren (DSKS) årsmøde, Nyborg, Denmark, 13-14 January 2023.
Mundtlige præsentationer v. konferencer, seminarer, mv.
Lindstrom Egholm C. “PRO palliation – hvad skal vi bruge det til?” Præsentation i netværk for basal palliation på sygehuset, Nyborg, 5. februar 2025.
Lindstrom Egholm C, Ikander T, Refer I, Pedersen SG, Wind-Bauer N, Lykke C, Bergenholtz H. Implementation of a national patient-reported outcome measure in general palliative care practice: a qualitative study of healthcare professionals’ experiences. Oral presentation at the ISOQOL Conference, Cologne, Germany, October 2024.
Lindstrom Egholm C. “Erfaringer med PRO for basal palliation”. Oplæg ved konferencen: Relief of psychosocial and existential pain through PRO. Syddansk Universitet, Odense, 21. September 2023.
Afledte samarbejder
Artikel: Grønhaug LM, Farver-Vestergaard I, Frølund JC, Lindstrom Egholm C, Løkke Ottesen A. Unveiling the burden of COPD: Patient perspectives on a Patient-Reported Outcome Measure to support communication in outpatient consultations. Frontiers in Rehabilitation Science 2024;5:1-15. https://doi.org/10.3389/fresc.2024.1434298
Poster: Grønhaug LM, Farver-Vestergaard I, Frølund JC, Lindstrom Egholm C, Løkke Ottesen A. Unveiling the burden of COPD: Patient perspectives on a Patient-Reported Outcome Measure to support communication in outpatient consultations. Poster presentation at the ISOQOL Conference, Cologne, Germany, October 13-16, 2024. Published in: Quality of Life Research 2024;33:S125.
Samarbejdspartnere
Den 10. februar 2022 har følgende PRO Palliation pilotkontekster givet tilsagn om at deltage i et forskningssamarbejde:
- Holbæk Sygehus: Kirurgisk Afdeling og evt. Medicinsk Afdeling
- Holbæk Kommune
- Nordsjællands Hospital: Onkologisk, Lunge- og Infektionsmedicinsk samt Kirurgisk Afdeling
- Bispebjerg og Frederiksberg Hospital: Lunge- og Hjertemedicinsk Afdeling samt Palliativ Forskningsenhed
- Sygehus Lillebælt: Lungemedicinsk Afdeling
- Herlev og Hvidovre Hospital: Nefrologisk Afdeling
- REHPA, Videncenter for Rehabilitering og Palliation.
REHPA arbejdsgruppe
- Mette Raunkiær, sygeplejerske, cand.scient.soc., ph.d., professor (projektleder)
- Cecilie Lindström Egholm, cand.scient.san.publ., ph.d., postdoc
- Ida Fritsdal Refer, cand.scient.fys., forskningsassistent
- Tina Backmann, fysioterapeut, cand.scient.san., AC-konsulent, REHPA (indtil 1. marts 2022)
- Dorthe Søsted, sygeplejerske, forløbsleder og projektkoordinator (fra 1. marts 2022)
- Heidi Bergenholtz, sygeplejerske, ph.d., lektor, Sjællands Universitetshospital og REHPA
- Kristina Thomassen, forskningsassistent, REHPA
- Mai-Britt Guldin, cand.psych., ph.d.
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