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 recognized. OBJECTIVE: This study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors. METHODS: Carers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers. RESULTS: DCM caregivers 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 [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with 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.
ABSTRACT
BACKGROUND: Degenerative cervical myelopathy (DCM) is a prevalent and progressively disabling neurological condition. Treatment is currently limited to surgery, the timing of which is not without controversy. New international guidelines recommend that all patients should undergo lifelong surveillance and those with moderate-to-severe or progressive disease should be offered surgery. Long-term surveillance will place substantial burden on health services and short clinic assessments may risk misrepresenting disease severity. The use of smart technology to monitor disease progression could provide an invaluable opportunity to lessen this burden and improve patient care. However, given the older demographic of DCM, the feasibility of smart technology use is unclear. OBJECTIVE: The aim of this study was to investigate current usage of smart technology in patients with self-reported DCM to inform design of smart technology apps targeted at monitoring DCM disease progression. METHODS: Google Analytics from the patient section of Myelopathy.org, an international DCM charity with a large online patient community, was analyzed over a 1-year period. A total of 15,761 sessions were analyzed. RESULTS: In total, 39.6% (295/744) of visitors accessed the website using a desktop computer, 35.1% (261/744) using mobile, and 25.3% (188/744) using a tablet. Of the mobile and tablet visitors, 98.2% (441/449) utilized a touchscreen device. A total of 51.3% (141/275) of mobile and tablet visitors used iPhone Operating System (iOS) and 45.8% (126/275) used an Android operating system. Apple and Samsung were the most popular smart devices, utilized by 53.6% (241/449) and 25.8% (116/449) of visitors, respectively. The overall visitor age was representative of DCM trials. Smart technology was widely used by older visitors: 58.8% (113/192) of mobile visitors and 84.2% (96/114) of tablet visitors were aged 45 years or older. CONCLUSIONS: Smart technology is commonly used by DCM patients. DCM apps need to be iOS and Android compatible to be accessible to all patients.
ABSTRACT
Degenerative cervical myelopathy (DCM) is the most common cause of adult spinal cord dysfunction, most classically presenting with a broad-based gait and clumsy hands. Limb sensory loss and paraesthesia are considered common symptoms of DCM. However, we report an unusual case of a patient presenting with prominent and atypical sensory symptoms. The patient repeatedly presented to accident and emergency complaining of her body resembling a wet gel-like substance that she attributed to the use of olive oil moisturising cream. The patient was found to have myelopathic signs on examination and MRI consistent with severe cervical myelopathy. She subsequently underwent successful decompressive anterior cervical discectomy, as recommended by international guidelines. This case serves to remind health professionals of uncommon presentations of common disease and the importance of maintaining a wide initial differential diagnosis.
