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 ¹. Referral to the national spinal injuries database should occur within 24 hours of diagnosis ¹. Advice from the regional specialist spinal cord injury centre outreach team should be sought throughout inpatient stay and at discharge to support rehabilitation ¹. 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 ¹.

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 ³. This plan should be regularly updated to reflect progress, goals, ongoing needs, and key contact information, especially at transitions of care ³. 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 ⁵. This prescription should be reviewed and updated at least every 4-6 weeks, with some reviews potentially undertaken in primary care ³.

Rehabilitation Strategies and Complication Prevention

Rehabilitation should adopt a multidisciplinary approach, encompassing physical, psychological, and psychiatric aspects of management ⁵.

• Physical Rehabilitation and Mobility:
Maintain joint range of motion, considering early use of splints and orthoses ¹. Seek specialist advice for hand splints for higher-level cervical spinal injury to maintain tenodesis grasp and release ability where indicated ¹. Consider interventions such as progressive sitting and tilt tables to increase mobility and aid early sitting as soon as possible ¹. 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 ¹.
• Preventing Complications:
Assess skin and pressure care, initiating a 24-hour positioning and turning programme and using a pressure mattress if appropriate ¹. Provide information about skin protection for people with sensory deficits ¹. Be aware of the risk of autonomic dysreflexia and treat it as a medical emergency ¹. Recognise that orthostatic hypotension is common and consider interventions to optimise blood pressure, such as medication review, graduated positioning, abdominal binders, and compression stockings ¹. Offer supportive care to prevent and manage complications, including venous thromboembolism, pressure ulcers, urinary incontinence, and faecal incontinence ².

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 ³. 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 ³. If anxiety, depression, or post-traumatic stress disorder (PTSD) is suspected, manage appropriately ³.

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 ¹. Regularly follow-up people referred for specialised rehabilitation to assess ongoing need and other appropriate referrals ³. 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 ³. 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 ³. 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 ³. Monitor progress against the rehabilitation plan, goals, and therapies, using patient-reported outcome measures (PROMs) and clinician-reported outcome measures (CROMs) ³.

Discharge Planning and Information Sharing

Planning for discharge and ongoing care, including rehabilitation, should begin on admission to hospital ². 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) ³. 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 ³. Ensure effective information sharing and integrated working by sharing clinical records and care and rehabilitation plans promptly between services and through multidisciplinary meetings ⁵. Give people a copy of their care plans or records, including discharge letters, clinical records, and rehabilitation plans ⁵.