Disorders of Consciousness and Complex Neurodisability - What do Service Users Access?

Purpose

To increase understanding of the occurrence and evolution of physical and postural disability affecting adults who remain in a prolonged disorder of consciousness, to better inform their long term health care provision.

Approach

The Royal Hospital for Neurodisability (RHN) provides expert long term care to adults who remain in a prolonged disorder of consciousness (PDoC). In June 2017, the RHN was home to 66 adults in PDoC, ranging from 11 months to 41 years since their brain injuries (median = 6 years). Most of our residents have been with us since their injuries and have had full access to an expert interdisciplinary team including on-site seating, splinting and spasticity services. Electronic notes, therapy programmes and clinic appointment records were used to evaluate the level and progression of physical disability within our residents and the clinical resources being used to prevent postural deterioration.

Outcomes

Complex physical disability and secondary impairments were common amongst our Residents. Nearly all (97%) had permanent contractures affecting one or more joints, with most having contractures affecting multiple limbs. A significant majority (79%) had spasticity impacting activities of daily living.

Residents commonly required spasticity interventions, including botulinum toxin treatment (64%) and systemic medications. A small number of patients had intrathecal baclofen pumps (9%) or had received intraneural phenol treatments (9%).

Our Residents universally required postural management programmes. All had a specialist tilt in space wheelchair and 35% of our Residents required a customised seating system. Some Residents (14%) required a customised sleeping system. Nearly all (92%) of our Residents had one or more splints, with 68% of splints needing to be custom made. A small number of Residents (3%) had received tendon release surgery.

People in disorders of consciousness experience a changing and complex physical presentation in the years and decades following their brain injury. Secondary impairments (such as spasticity and contracture) are common and threaten physical health, comfort, participation in daily activities and ease of care. Failure to prevent or manage secondary impairments can increase the level of disability suffered but effective management is difficult, even in the most expert of settings.

In the years since their brain injury, our residents required continual expert support from Therapy, Wheelchair Services, Nursing and specialist Doctors to maintain their physical health. Their complex care requirements fluctuated over the years, but never disappeared.

People in a prolonged disorder of consciousness appear to require lifelong expert clinical services to maintain their physical health. Further work should focus on quantifying the impact of physical management strategies on quality of life, burden of care and health outcomes.

Implications

People who remain in a prolonged disorder of consciousness may require lifelong access to expert health care to maintain their physical health and minimise disability. Health care planning and provision for this group of service users should consider the duration and complexity of their future needs.

Top three learning points

  1. Continual physical deterioration should be assumed as standard in those living in a disorder of consciousness.
  2. Contractures exist in nearly all people with a disorder of consciousness despite often being preventable.
  3. People who live in a disorder of consciousness need constant access to expert seating and spasticity services.

Fund acknowledgements

No funding was used to support this service evaluation.

Additional notes

This work was presented at Physiotherapy UK 2019. 

Material was part presented to a small group of clinicians (~ 30 people) working in PDOC at a specialist meeting held at the Holy Cross Hospital in September 2017.

This work was presented at Physiotherapy UK 2019

Please see the attached Innovations poster below. 

 

For further information about this work please contact Teresa Clark

 

Reference(s):

Royal College of Physicians. Prolonged disorders of consciousness: National clinical guidelines. London, RCP, 2013