Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis

Highlights

• Caring for people with severe MS has a detrimental effect on quality of life.

• Nonetheless, perceived carer burden was only moderate.

• High carer anxiety, low economic status, and living in predict higher burden.

• It is crucial to recognize carers as full partners in the provision of care.

Abstract

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. Multivariate linear regression explored carer and PwSMS factors associated with ZBI score.

Results

Carers (61% women, mean age 60.2 years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the 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.

Introduction

Around 15% of people with multiple sclerosis (MS) have a progressive course from the outset (primary progressive MS), and a further 65% develop progressive disease after a variable period with relapsing-remitting course (secondary progressive MS) [1]. For those with primarily or secondarily progressive MS, treatment options to delay or prevent further clinical worsening are limited [2] and life expectancy is reduced by about a decade [3]. Post-marketing studies on disease-modifying MS treatments suggest that they may prolong survival [4]. Thus, people with MS can live for many years in a highly dependent condition.

A systematic literature review on 2097 carers of people with MS at all disease stages [5] revealed a huge impact on several aspects of carer life. More recent studies found reduced carer mental health, physical health, and health-related quality of life (HRQOL) [6], [7], [8], [9], [10], [11], [12], [13], [14], [15], [16].

We found only two studies that focused on carers of persons with severe MS (PwSMS), both of which used a qualitative approach. Golla et al. recently assessed the unmet needs of 12 carers of PwSMS in Cologne, Germany [17]. They found that carers and PwSMS formed a tight dyad, such that carers tended to group the unmet needs of the PwSMS with their own and rarely focused on their own wishes and restrictions. Similarly, a qualitative Italian study [18] uncovered emotional ‘contagion’ between PwSMS and their carers: the latter felt themselves to be the exclusive interpreters and providers of their loved ones' needs, and reported a profound sense of isolation and fear for the future.

In developing best practices to improve outcomes for people with chronic and progressive neurological diseases, it is important to gain insight into levels of burden, psychological distress, and HRQOL in carers [19]. In the present study, we assessed the consequences of providing care to PwSMS, and explored factors associated with perceived carer burden. The study was a secondary (cross-sectional) analysis of baseline data of the ongoing PeNSAMI trial [20], conducted on Italian PwSMS and their carers. Carer outcome measures were the 22-item Zarit Burden Interview (ZBI) [21], [22], the Short Form-36 (SF-36) [23], and the Hospital Anxiety and Depression Scale (HADS) [24].