What follow-up care and rehabilitation strategies should be implemented for patients recovering from transverse myelitis?

For patients recovering from transverse myelitis, follow-up care and rehabilitation strategies should be comprehensive and multidisciplinary, mirroring approaches for other spinal cord injuries.

Initial Referral and Specialist Contact

Ongoing contact with a regional specialist spinal cord injury centre should be maintained NICE NG211. Referral to the national spinal injuries database should occur within 24 hours of diagnosis NICE NG211. Advice from the regional specialist spinal cord injury centre outreach team should be sought throughout inpatient stay and at discharge to support rehabilitation NICE NG211. A healthcare professional with appropriate clinical skills should complete an American Spinal Injury Association (ASIA) chart assessment as soon as possible, repeating as clinically indicated NICE NG211.

Comprehensive Assessment and Personalised Rehabilitation Plan

Before discharge from secondary care, a multidisciplinary team should complete an individualised and holistic rehabilitation needs assessment, involving the person and their family or carers, to inform a rehabilitation plan NICE CKS. This plan should be regularly updated to reflect progress, goals, ongoing needs, and key contact information, especially at transitions of care NICE CKS. A personalised rehabilitation and management plan should be developed collaboratively, including areas of rehabilitation, interventions, goal setting, and symptom management, and recorded in a rehabilitation prescription NICE CKS. This prescription should be reviewed and updated at least every 4-6 weeks, with some reviews potentially undertaken in primary care NICE CKS.

Rehabilitation Strategies and Complication Prevention

Rehabilitation should adopt a multidisciplinary approach, encompassing physical, psychological, and psychiatric aspects of management NICE CKS.

• Physical Rehabilitation and Mobility:
Maintain joint range of motion, considering early use of splints and orthoses NICE NG211. Seek specialist advice for hand splints for higher-level cervical spinal injury to maintain tenodesis grasp and release ability where indicated NICE NG211. Consider interventions such as progressive sitting and tilt tables to increase mobility and aid early sitting as soon as possible NICE NG211. If spinal orthoses are used, regularly assess for complications like pain, pressure sores, swallowing, or breathing difficulties, and inform the relevant surgical team if side effects significantly affect rehabilitation engagement NICE NG211.
• Preventing Complications:
Assess skin and pressure care, initiating a 24-hour positioning and turning programme and using a pressure mattress if appropriate NICE NG211. Provide information about skin protection for people with sensory deficits NICE NG211. Be aware of the risk of autonomic dysreflexia and treat it as a medical emergency NICE NG211. Recognise that orthostatic hypotension is common and consider interventions to optimise blood pressure, such as medication review, graduated positioning, abdominal binders, and compression stockings NICE NG211. Offer supportive care to prevent and manage complications, including venous thromboembolism, pressure ulcers, urinary incontinence, and faecal incontinence NICE NG234.

Psychological and Emotional Support

Discuss psychological support with the person and their family or carers, offering tailored emotional support as part of the overall rehabilitation programme NICE CKS. Be aware that short-term psychological problems like acute stress are common after traumatic injury, with symptoms such as disturbed sleep, intrusive thoughts, nightmares, flashbacks, low mood, and anxiety NICE CKS. If anxiety, depression, or post-traumatic stress disorder (PTSD) is suspected, manage appropriately NICE CKS.

Ongoing Follow-up and Primary Care Role

After hospital discharge, consider ongoing contact between the rehabilitation team and the person, their family members, and carers, with a structured review of progress as part of outpatient follow-up, potentially via telephone or video link NICE NG211. Regularly follow-up people referred for specialised rehabilitation to assess ongoing need and other appropriate referrals NICE CKS. Follow up people discharged from critical care 2-3 months after discharge to carry out a functional reassessment of health and social care needs, including physical, sensory, communication, social care, equipment, anxiety, depression, PTSD, behavioural, cognitive, and psychosocial problems NICE CKS. Based on this reassessment, refer to appropriate services if recovery is slower than anticipated or new morbidity develops, and provide support if recovery is not as quick as expected NICE CKS. The role of primary care includes supporting the rehabilitation plan, providing educational material (e.g., self-care, sleep, pacing activities, pain management), discussing expected recovery and emotional impact, and providing information or referrals to services that may help prevent future injury NICE CKS. Monitor progress against the rehabilitation plan, goals, and therapies, using patient-reported outcome measures (PROMs) and clinician-reported outcome measures (CROMs) NICE CKS.

Discharge Planning and Information Sharing

Planning for discharge and ongoing care, including rehabilitation, should begin on admission to hospital NICE NG234. At discharge, people and their family or carers should receive a single point of contact at the hospital for information, help, and advice for a limited time period (e.g., 3 months) NICE CKS. Encourage people to record information about their injuries, treatments, and rehabilitation therapy options, for example, using a diary, to assist discussions and shared decision-making NICE CKS. Ensure effective information sharing and integrated working by sharing clinical records and care and rehabilitation plans promptly between services and through multidisciplinary meetings NICE CKS. Give people a copy of their care plans or records, including discharge letters, clinical records, and rehabilitation plans NICE CKS.