Caregiver Impact and Quality of Life in Multiple Sclerosis

Summary

Multiple sclerosis (MS) is a chronic, immune-mediated condition that frequently impairs mobility, cognition and independence, placing substantial demands on informal caregivers, typically family members. These carers often assume complex tasks ranging from personal care and medication management to emotional support and advocacy, leading to elevated levels of physical fatigue, psychological distress and social isolation. The multidimensional construct of caregiver burden encompasses both objective demands, such as hours of assistance, and subjective perceptions of stress and role strain. Quality of life (QoL) among caregivers is influenced by disease severity, care duration, access to support services and cultural expectations, with pronounced gender differences in many regions. Unmet needs include information about disease trajectories, practical coping strategies and respite care. Recent shifts towards home-based therapies and integrated clinic-based support aim to preserve caregiver wellbeing, recognising that caregiver resilience directly affects patient outcomes. International research underscores the need for tailored interventions, policy reforms and multidisciplinary collaboration to mitigate burden and enhance the health-related QoL of both carers and those they support.

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Caregiver Impact and Quality of Life in Multiple Sclerosis publication trend

The graph below shows the total number of articles in caregiver impact and quality of life in multiple sclerosis across all publications each year (not limited to Nature Index journals).

Technical terms

Caregiver burden: the multidimensional strain experienced by family members or friends who provide unpaid care to a person with chronic illness.

Quality of life (QoL): an individual’s overall perception of their physical, psychological and social wellbeing.

Disease-modifying therapies (DMTs): treatments designed to alter the course of multiple sclerosis by reducing relapse frequency and delaying disability progression.

Acceptance and Commitment Therapy (ACT): a psychological approach combining mindfulness and commitment strategies to enhance psychological flexibility and wellbeing.

References

  1. Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis. Behavioural Neurology (2015).
  2. A Disproportionate Burden of Care: Gender Differences in Mental Health, Health‐Related Quality of Life, and Social Support in Mexican Multiple Sclerosis Caregivers. Behavioural Neurology (2015).
  3. What do multiple sclerosis patients and their caregivers perceive as unmet needs?. BMC Neurology (2013).
  4. The Impact of In‐Hospital Disease Modifying Treatments on Mental and Physical Burden in Caregiver of Patients With MS. Annals of Clinical and Translational Neurology (2025).
  5. Integrating Caregiver Support into Multiple Sclerosis Care. Multiple Sclerosis International (2020).
  6. Self-help Acceptance and Commitment Therapy for Carers of People with Multiple Sclerosis: A Feasibility Randomised Controlled Trial. Journal of Clinical Psychology in Medical Settings (2020).
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