Patient perspectives on patient-reported outcomes in multiple sclerosis treatment trajectories: A qualitative study of why, what, and how?

Katrine, Westergaard; Skovgaard, Lasse; Magyari, Melinda; Kristiansen, Maria

doi:10.1016/j.msard.2021.103475

Cited by 7 publications

(7 citation statements)

References 26 publications

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“…It will also aid in validating pwMS in their experience of cognitive difficulties, especially where discrepancies between self‐reported and assessed cognitive functioning exist. Qualitative research has demonstrated a need for multifaceted regular cognitive screening by illustrating that pwMS value the consideration of self‐reported cognitive difficulties (Westergaard et al, 2022) and perceive cognitive difficulties to be neglected in clinical care (Mc Auliffe & Hynes, 2019). Annual cognitive assessments are now recommended as best clinical practice (National Institute for Health and Care Excellence, 2022).…”

Section: Discussionmentioning

confidence: 99%

Premorbid cognitive functioning influences differences between self‐reported cognitive difficulties and cognitive assessment in multiple sclerosis

Stein

O’Keeffe

McManus

et al. 2023

Journal of Neuropsychology

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Cognitive difficulties are reported in up to 60% of people with MS (pwMS). There is often a discrepancy between self‐reported cognitive difficulties and performance on cognitive assessments. Some of this discrepancy can be explained by depression and fatigue. Pre‐MS cognitive abilities may be another important variable in explaining differences between self‐reported and assessed cognitive abilities. PwMS with high estimated premorbid cognitive functioning (ePCF) may notice cognitive difficulties in daily life whilst performing within the average range on cognitive assessments. We hypothesised that, taking into account depression and fatigue, ePCF would predict (1) differences between self‐reported and assessed cognitive abilities and (2) performance on cognitive assessments. We explored whether ePCF predicted (3) self‐reported cognitive difficulties. Eighty‐seven pwMS completed the Test of Premorbid Functioning (TOPF), the Brief International Cognitive Assessment for MS (BICAMS), self‐report measures of cognitive difficulty (MS Neuropsychological Questionnaire; MSNQ), fatigue (MS Fatigue Impact Scale; MFIS) and depression (Hospital Anxiety and Depression Scale; HADS). Results revealed that, taking into account covariates, ePCF predicted (1) differences between self‐reported and assessed cognitive abilities, p < .001 (model explained 29.35% of variance), and (2) performance on cognitive assessments, p < .001 (model explained 46.00% of variance), but not (3) self‐reported cognitive difficulties, p = .545 (model explained 35.10% of variance). These results provide new and unique insights into predictors of the frequently observed discrepancy between self‐reported and assessed cognitive abilities for pwMS. These findings have important implications for clinical practice, including the importance of exploring premorbid factors in self‐reported experience of cognitive difficulties.

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Section: Discussionmentioning

confidence: 99%

Premorbid cognitive functioning influences differences between self‐reported cognitive difficulties and cognitive assessment in multiple sclerosis

Stein

O’Keeffe

McManus

et al. 2023

Journal of Neuropsychology

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“…Based on a qualitative study among PwMS, Westergaard et al. emphasize the importance of combining patients' and health care professionals' perspectives regarding PRO if aiming at sustainable solutions [ 5 ]. In the present study, several neurologists articulate the importance of patient involvement, and it should be considered that such involvement also includes patients’ active participation in the preparation and implementation of PROs.…”

Section: Discussionmentioning

confidence: 99%

“…Multiple sclerosis (MS) is characterized by a multitude of symptoms and conditions that affect patients' wellbeing. Objective measures of disease burden traditionally used in MS care, such as the Expanded Disability Status Scale (EDSS), do not always reflect patients’ experience of their health [ 4 ], and patients with MS believe that PROs hold important potentials, such as enhanced patient involvement and more multifaceted agendas in clinical consultations [ 5 ].…”

Section: Introductionmentioning

confidence: 99%

Neurologists’ views on patient reported outcomes in multiple sclerosis care

Reitzel

Lynning

Skovgaard

2022

Heliyon

Self Cite

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“…Gennem dette kvalitative interviewstudie, der er publiceret i 2021, blev 20 personer med MS' perspektiver på anvendelse af PRO i konsultationerne undersøgt ud fra henholdsvis fokusgruppeinterviews og individuelle interviews. Desuden blev det undersøgt, hvilke aspekter ved at leve med MS, der bør afspejles i PROspørgeskemaer, samt de mulige fordele og barrierer ved at integrere PRO-spørgeskemaer i den kliniske MS-behandling (Westergaard et al, 2021).…”

Section: Interviewundersøgelse Med Personer Med Msunclassified

Etablering af fælles fodslag

Steenberg,

Hørmann Thomsen,

Lynning

et al. 2023

TFSS

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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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Patient perspectives on patient-reported outcomes in multiple sclerosis treatment trajectories: A qualitative study of why, what, and how?

Cited by 7 publications

References 26 publications

Premorbid cognitive functioning influences differences between self‐reported cognitive difficulties and cognitive assessment in multiple sclerosis

Premorbid cognitive functioning influences differences between self‐reported cognitive difficulties and cognitive assessment in multiple sclerosis

Neurologists’ views on patient reported outcomes in multiple sclerosis care

Etablering af fælles fodslag

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