Contributions
Abstract: 175
Type: Oral
Abstract Category: Clinical aspects of MS - Economic burden
Background: Few studies have investigated wellbeing and burden in carers of people with severe multiple sclerosis (PwSMS).
Objectives: To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden.
Methods: Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers participating to the PeNSAMI trial (randomized controlled study on the effectiveness of a home-based palliative approach for PwSMS and their carers, ISRCTN73082124). Multivariate linear regression explored carer and PwSMS factors associated with ZBI score.
Results: Between January and November 2015, 78 PwSMS-carer dyads received the baseline visit. Carers (61% women, mean age 60.2 years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the Italian norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burden was only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p=0.009), and living with the PwSMS (p=0.02) were independent predictors of perceived burden.
Conclusions: Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, low economic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.
Disclosure:
PC has been a board member of Biogen Idec, and received travel grants from Sanofi Aventis, Biogen Idec, and Merk Serono. AL has been a Bayer, Biogen, Merck Serono and Genzyme advisory board member. She received travel grants and honoraria from Bayer, Biogen, Merck Serono, Novartis, Sanofi and Teva and her Institution received research grants from Bayer, Biogen, Merck Serono, Novartis, Sanofi and Teva. MGG has received research funding from Merck Serono and consulting and speaking fees from Biogen Idec. FP has received speaking honoraria from Bayer Schering, Biogen Idec, Merck Serono, Novartis, and Sanofi Aventis. He has been a Bayer Schering, Biogen Idec, Merck Serono, and Novartis advisory board member. AS has been a board member of Biogen Idec and Novartis, and has received speaker honoraria from Excemed, Genzyme, and Merck Serono. All other authors declare that they have no competing interests.
Funding: This work was supported by the Fondazione Italiana Sclerosi Multipla [grant number 2014/S/1].
Abstract: 175
Type: Oral
Abstract Category: Clinical aspects of MS - Economic burden
Background: Few studies have investigated wellbeing and burden in carers of people with severe multiple sclerosis (PwSMS).
Objectives: To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden.
Methods: Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers participating to the PeNSAMI trial (randomized controlled study on the effectiveness of a home-based palliative approach for PwSMS and their carers, ISRCTN73082124). Multivariate linear regression explored carer and PwSMS factors associated with ZBI score.
Results: Between January and November 2015, 78 PwSMS-carer dyads received the baseline visit. Carers (61% women, mean age 60.2 years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the Italian norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burden was only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p=0.009), and living with the PwSMS (p=0.02) were independent predictors of perceived burden.
Conclusions: Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, low economic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.
Disclosure:
PC has been a board member of Biogen Idec, and received travel grants from Sanofi Aventis, Biogen Idec, and Merk Serono. AL has been a Bayer, Biogen, Merck Serono and Genzyme advisory board member. She received travel grants and honoraria from Bayer, Biogen, Merck Serono, Novartis, Sanofi and Teva and her Institution received research grants from Bayer, Biogen, Merck Serono, Novartis, Sanofi and Teva. MGG has received research funding from Merck Serono and consulting and speaking fees from Biogen Idec. FP has received speaking honoraria from Bayer Schering, Biogen Idec, Merck Serono, Novartis, and Sanofi Aventis. He has been a Bayer Schering, Biogen Idec, Merck Serono, and Novartis advisory board member. AS has been a board member of Biogen Idec and Novartis, and has received speaker honoraria from Excemed, Genzyme, and Merck Serono. All other authors declare that they have no competing interests.
Funding: This work was supported by the Fondazione Italiana Sclerosi Multipla [grant number 2014/S/1].