The MS in the 21st Century initiative is a Steering Group of international multiple sclerosis (MS) specialists and patient advocates with a current focus of improving education and communication between healthcare professionals and people with MS (PwMS).
To understand perceptions of the factors that lead PwMS to bring carers along to their consultations and the potential impacts of this involvement; in particular, how this might affect the communication and relationship between HCPs and PwMS.
An electronic survey was developed to gain insight into the experiences of HCPs, PwMS and carers. The survey was conducted online in 2019-2020. Multiple answers were solicited in response to 14 questions.
At the time of writing 137 respondents had completed the survey (47 HCPs, 66 PwMS, and 24 carers). The same proportion of carers responded that they “almost always accompanied their PwMS to appointments” (41.7%) and “had never been to an appointment” (41.7%). PwMS reported the most common reasons for taking a carer with them was ‘to provide emotional support’ (47.9%), ‘to help with travel’ (43.8%), and ‘to allow the carer to ask their own questions’ (35.4%). Three quarters (75.0%) of carers said the reason they attend is to help the PwMS understand information given to them. Of the three groups, HCPs were most likely to say the carers’ opinions influence PwMS’ treatment decisions (75.0%). Both HCPs and PwMS recognized that the presence of a carer during an appointment can negatively impact on the time available (40.4% and 28.3% respectively) but both groups also reported that PwMS are more likely to remember the topics that they want to discuss with a carer present (80.9% and 54.3% respectively) and to be happier with care decisions they make (53.2% and 56.5% respectively). Additionally, PwMS (89.1%) and carers (93.3%) both reported that attending consultations was an important way of ensuring the carer feels more involved and better informed about MS.
There are several positive impacts of carers attending consultations, including supporting both the emotional, information and practical needs of PwMS, and the engagement and information needs of carers. Whilst the PwMS should make the decision whether a carer attends the consultation, HCPs should facilitate and support invited carer attendance to optimize these benefits. Currently, this may pose additional social distancing challenges and require creative solutions.