Årg. 21 Nr. 39 (2023): Patient Rapporterede Oplysninger
Originalartikler

Etablering af fælles fodslag: patienter og klinikeres forventninger til PRO-data i behandlingen af multipel sclerose

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  • Josephine Lyngh Steenberg,
  • Trine Hørmann Thomsen,
  • Marie Lynning,
  • Sofie Olsgaard Bergien,
  • Rolf Pringler Holm,
  • Lasse Skovgaard
Josephine Lyngh Steenberg
Scleroseforeningen
Bio
Trine Hørmann Thomsen
Bio
Marie Lynning
Bio
Sofie Olsgaard Bergien
Bio
Rolf Pringler Holm
Bio
Lasse Skovgaard
Bio
DOI: https://doi.org/10.7146/tfss.v21i39.134015

Publiceret 2023-12-07

Citation/Eksport

Steenberg, J. L., Hørmann Thomsen, T., Lynning, M., Olsgaard Bergien, S., Pringler Holm, R., & Skovgaard, L. (2023). Etablering af fælles fodslag: patienter og klinikeres forventninger til PRO-data i behandlingen af multipel sclerose. Tidsskrift for Forskning I Sygdom Og Samfund, 21(39). https://doi.org/10.7146/tfss.v21i39.134015
Oplysninger om copyright

Resumé

Brug af Patientrapporterede Oplysninger (PRO) i mødet mellem patient og sundhedsprofessionel kan styrke patientinddragelsen og højne behandlingskvaliteten. Formålet med dette studie er at undersøge, hvordan PRO bliver relevant og meningsfuldt at anvende for både personer med multipel sclerose (MS) og sundhedsprofessionelle.

Undersøgelsen bestod af 1) et systematisk litteraturstudie, hvor eksisterende PRO-spørgeskemaer indenfor MS-området, og hvorvidt der har været inddraget patienter i udviklingen af dem, blev kortlagt2) en interviewundersøgelse, hvor personer med MS’ perspektiv på PRO blev undersøgt, 3) en workshop hvor sundhedsprofessionelles perspektiv på PRO blev undersøgt.

Der er et øget behov for at inddrage personer med MS i udviklingen af PRO, hvis PRO skal være relevant for personer med MS samt fremme personcentrering i MS-behandlingen. For at PRO-spørgeskemaer bliver meningsfulde for både personer med MS og sundhedsprofessionelle at anvende, skal PRO kunne tilpasses den enkelte patient, da sygdomsforløbet og symptomprofilen for personer med MS kan variere meget. Imidlertid bør det overvejes om alle patienter har gavn af PRO. For at favne, hvad der for personer med MS er relevant at drøfte med en sundhedsprofessionel, bør PRO-spørgeskemaer omfatte neurologiske symptomer, kognitive funktionsnedsættelser, mental sundhed og velvære, egenomsorg og sociale udfordringer relateret til MS. Dog bør dette afstemmes ift. den sundhedsprofessionelles kompetencer, både for at den sundhedsprofessionelle oplever at kunne give evidente råd om symptomer og behandling, men også for at patienten modtager den bedst mulige behandling og vejledning. Desuden må PRO ikke være tidskrævende, hverken for de sundhedsprofessionelle at anvende eller for patienterne at udfylde. Imidlertid kan det diskuteres, hvorvidt det danske sundhedsvæsen rustet og organiseret til at inkorporerer et tiltag som PRO, som reflekterer både patienter og sundhedsprofessionelles ønsker og behov.

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