JMIR Publications

ABSTRACT

Background:

Degenerative Cervical Myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognised.

Objective:

The objective was to measure quality of life of DCM informal carers and provide preliminary insight into possible contributing factors.

Methods:

Carers of individuals with DCM completed an online survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of carer happiness and 7 dimensions of carer burden using the CarerQol instrument. The relationship between patient disease severity, patient pain and carer quality of life was investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers.

Results:

DCM carers experienced substantial burden as a result of their caregiving (mean CarerQol-7D = 64.1; 95%CI: 58.8–69.5) and low happiness (mean CarerQol-VAS = 6.3; 95%CI: 5.7–6.9). Burden was high and happiness low in DCM carers when compared to a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups.

Conclusions:

Caring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.