“…The reasons for this were not clear from the survey, though some qualitative feedback suggests this may be as a result of not having referral options available, limited resources, long waiting lists, or the clinical expertise in MS and/or cognition within teams. Similar to this [ 48 ], in a survey of 27 HCPs at a recent education event, it was reported that HCPs did not believe that cognition as well by health care services or well-resourced in the UK. These results also reflect those reported by Klein et al [ 15 ].…”
Section: Discussionsupporting
confidence: 64%
“…Although clinical judgement is an important corner stone of evidence-based practice, it should be used in conjunction with the best available and up-to-date evidence and patient preferences [ 46 , 47 ]. Feedback from people with MS who receive cognitive input from HCPs [ 48 ] indicates that the way in which information is provided and communicated can often be difficult for people who are already experiencing cognitive challenges. This is another area that needs to be considered by HCPs providing cognitive care to people with MS and is linked to the “teaching approaches” presented in Table 5 .…”
Section: Discussionmentioning
confidence: 99%
“…In contrast, confidence in treatment and assessment of cognition was much lower across the HCPs surveyed, suggesting that a lack of confidence may be impacting on the cognitive care provided across services. Globally, there is also an increased recognition for the need to assess and treat cognitive difficulties in MS [ 43 , 48 ]. From the open-text responses, HCPs indicated a desire for further specialist training and support in this area.…”
Section: Discussionmentioning
confidence: 99%
“…Post-registration training has been limited for some of the HCPs and both specific training and peer support were requested by participants. Langdon et al [ 48 ] also reported that HCPs requested further education and information for HCPs and those living with MS in order to improve cognitive care for patients. In the current study, there was also a need for increased resources and regional service availability reported.…”
Background. A recent survey of 109 healthcare professionals explored how UK healthcare professionals typically assess and treat multiple sclerosis (MS)-related cognitive impairment. Little is currently known about what constitutes usual care for cognitive impairment and psychosocial care for people with MS in Ireland. Aim. The aim of the current research was to survey healthcare professionals (HCPs) who work with people with MS, to understand current assessment and management of cognition and psychosocial care in people with MS in the Republic of Ireland. Methods. A cross-sectional survey design was used. Data were collected online through Microsoft forms and through postal responses. The original UK questionnaire was adapted, piloted, and distributed to Irish HCPs. Participants were qualified HCPs who work clinically with people with MS in the Republic of Ireland. Results. Ninety-eight HCPs completed the survey. Only 34% of those surveyed reported routine screening of cognition for people with MS within their services; approximately, 36% HCPs reported that they did not provide information or services in relation to cognition to people with MS and 39% reported not referring elsewhere when cognitive difficulties were suspected. Out of the 98 HCPs, 47% reported assessing mood difficulties as part of their services, with 14% unsure. In total, 70% of participants reported onward referral took place if mood difficulties were identified. The Montreal Cognitive Assessment was the most commonly administrated cognitive assessment. Cognitive intervention choices were found to be guided by clinical judgement in 75.5% of cases. Discussion. Despite the high importance placed on cognitive and psychosocial care, there is very little consistency in treatment and assessment across services for people with MS in Ireland.
“…The reasons for this were not clear from the survey, though some qualitative feedback suggests this may be as a result of not having referral options available, limited resources, long waiting lists, or the clinical expertise in MS and/or cognition within teams. Similar to this [ 48 ], in a survey of 27 HCPs at a recent education event, it was reported that HCPs did not believe that cognition as well by health care services or well-resourced in the UK. These results also reflect those reported by Klein et al [ 15 ].…”
Section: Discussionsupporting
confidence: 64%
“…Although clinical judgement is an important corner stone of evidence-based practice, it should be used in conjunction with the best available and up-to-date evidence and patient preferences [ 46 , 47 ]. Feedback from people with MS who receive cognitive input from HCPs [ 48 ] indicates that the way in which information is provided and communicated can often be difficult for people who are already experiencing cognitive challenges. This is another area that needs to be considered by HCPs providing cognitive care to people with MS and is linked to the “teaching approaches” presented in Table 5 .…”
Section: Discussionmentioning
confidence: 99%
“…In contrast, confidence in treatment and assessment of cognition was much lower across the HCPs surveyed, suggesting that a lack of confidence may be impacting on the cognitive care provided across services. Globally, there is also an increased recognition for the need to assess and treat cognitive difficulties in MS [ 43 , 48 ]. From the open-text responses, HCPs indicated a desire for further specialist training and support in this area.…”
Section: Discussionmentioning
confidence: 99%
“…Post-registration training has been limited for some of the HCPs and both specific training and peer support were requested by participants. Langdon et al [ 48 ] also reported that HCPs requested further education and information for HCPs and those living with MS in order to improve cognitive care for patients. In the current study, there was also a need for increased resources and regional service availability reported.…”
Background. A recent survey of 109 healthcare professionals explored how UK healthcare professionals typically assess and treat multiple sclerosis (MS)-related cognitive impairment. Little is currently known about what constitutes usual care for cognitive impairment and psychosocial care for people with MS in Ireland. Aim. The aim of the current research was to survey healthcare professionals (HCPs) who work with people with MS, to understand current assessment and management of cognition and psychosocial care in people with MS in the Republic of Ireland. Methods. A cross-sectional survey design was used. Data were collected online through Microsoft forms and through postal responses. The original UK questionnaire was adapted, piloted, and distributed to Irish HCPs. Participants were qualified HCPs who work clinically with people with MS in the Republic of Ireland. Results. Ninety-eight HCPs completed the survey. Only 34% of those surveyed reported routine screening of cognition for people with MS within their services; approximately, 36% HCPs reported that they did not provide information or services in relation to cognition to people with MS and 39% reported not referring elsewhere when cognitive difficulties were suspected. Out of the 98 HCPs, 47% reported assessing mood difficulties as part of their services, with 14% unsure. In total, 70% of participants reported onward referral took place if mood difficulties were identified. The Montreal Cognitive Assessment was the most commonly administrated cognitive assessment. Cognitive intervention choices were found to be guided by clinical judgement in 75.5% of cases. Discussion. Despite the high importance placed on cognitive and psychosocial care, there is very little consistency in treatment and assessment across services for people with MS in Ireland.
“…The panel also stressed that the implications of cognitive symptoms on employment, including the possibility of future employment difficulties, should be acknowledged and proactively discussed during consultations with HCPs. HCPs may address employment concerns by providing a referral to a vocational counsellor [ 15 ] or vocational rehabilitation programme (a programme aimed at supporting people with a health condition to find work or remain in employment) [ 41 ].…”
Multiple sclerosis (MS) is a chronic, neurodegenerative, inflammatory condition usually associated with physical disability. Clinical care has been skewed toward the physical manifestations of the disease, yet a range of silent symptoms occurs including the cognitive aspects of MS. In a 2018 meeting of MS in the 21st Century (MS21), an international steering committee comprising both specialists and patient experts recognised that the ‘invisible symptoms’ of MS pose a significant challenge to patient engagement. These findings prompted the European Charcot Foundation (ECF) MS21 symposium (2020), where a panel consisting of two leading MS clinicians and an MS patient expert (who were all members of the MS21 steering group) gathered to discuss the impact of cognitive impairment on the everyday lives of people with MS.
The perspectives and experiences of the panellists are summarised in this paper. The key points raised were that (1) the cognitive manifestations of MS are under-recognised and have consequently been undermanaged from a clinical perspective and (2) cognitive impairment due to MS has a significant impact upon daily living and patient quality of life. During discussions about how these challenges can be addressed, the panel advocated for an improvement in education about cognitive symptoms for people living with MS and healthcare professionals (HCPs) to raise awareness about this aspect of MS. Furthermore, the panel emphasised the importance of open and proactive communication between HCPs and their patients with MS about cognitive symptoms to reduce the stigma attached to these symptoms. In the opinion of the panel, future clinical trials which include cognitive outcomes as key endpoints are needed. Reflecting this point, cognitive impairment in MS care also needs to be treated as an important disease symptom, as is done with physical symptoms of the disease. Implementing early and routine cognition screening and promoting measures for protecting cognition to people living with MS, such as cognitive rehabilitation and a ‘brain-healthy’ lifestyle, are actions which can drive forward the recognition of cognitive impairment as a care priority.
If prioritised as highly as physical disability in both the MS care and clinical drug development setting, and proactively discussed in conversations between HCPs and patients with MS, the ‘invisibility’ of cognitive impairment in MS can be lifted and a better quality of life can be promoted for people living with MS.
Supplementary Information
The online version contains supplementary material available at 10.1007/s40120-023-00519-z.
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