Informal Caring in Motor Neuron Disease: Measuring and Understanding Health Related Quality of Life

Background: Informal carers play a vital role in supporting people with motor neuron disease (MND), often at significant cost to their own health-related quality of life (HRQoL). Despite recognition of this impact, HRQoL in this population remains poorly understood and inconsistently measured. As research shifts toward intervention development, there is a need for valid, conceptually grounded HRQoL measures that reflect carers’ lived experiences.

Methods: A mixed methods approach was used to examine how HRQoL is measured and understood among informal carers in MND. A systematic review evaluated the content validity of existing HRQoL person-reported outcome measures (PROMs). This was complemented by a scoping review and participatory work with current and bereaved carers to develop a HRQoL conceptual framework grounded in lived experiences. A retrospective cross-sectional survey examined the provision of carer support across MND Care Centres. Finally, qualitative semi-structured interviews explored carers’ experiences of post-diagnostic support and the impact of caregiving on their HRQoL.

Results: Existing HRQoL PROMs lacked adequate evidence of content validity, particularly comprehensiveness, for informal carers. In response, a comprehensive conceptual framework, Carer-QuALS, was developed, comprising 37 subthemes across physical, social, and psychological HRQoL domains. Survey findings indicated that carer support was largely informal, typically delivered during appointments for the person with MND, without routine measurement of carer HRQoL. Qualitative interviews highlighted varied support experiences, substantial unmet needs and barriers to accessing services. These findings aligned with and reinforced the multidimensional domains identified within the Carer-QuALS framework.

Conclusions: The evidence base underpinning HRQoL measurement in informal carers in MND is methodologically limited and should be interpreted with caution. The Carer-QuALS framework provides a robust foundation for future measurement and intervention development. Inconsistencies and informality in carer support provision highlight significant gaps in services, underscoring the need for validated HRQoL measures and increased carer-focused support within MND care.