Study design: A survey of spinal cord injury patients attending a follow-up clinic in a Regional Spinal Injuries Centre.
Objectives: To investigate whether spinal cord injury patients wish to receive written information about any changes in their medical condition after an outpatient visit or, following readmission in a spinal unit.
Setting: Regional Spinal Injuries Centre, Southport, United Kingdom.
Methods: A questionnaire was developed to assess the following: (1) Whether spinal cord injury patients wished to receive written information about changes in their medical condition after an outpatient visit or following readmission in a spinal unit; and (2) Whether provision of such written information would cause needless anxiety to patients and/or their relatives/carers.
Results: A total of 128 adults with spinal cord injury filled in this questionnaire. One hundred and six persons (83%) wished to receive written information about any changes in their medical condition after an outpatient visit, whereas eight (6%) felt that provision of such written information was not required. 115 individuals with spinal cord injury (90%) preferred to receive a copy of the MRI scan report, with interpretation of the findings, while 11 (9%) would be happy not to receive such information. 115 persons with spinal cord injury (90%) felt that written information about their medical condition would be valuable for showing to a locum General Practitioner (GP), if necessary, who may not be acquainted with their medical status. Only eight (6%) did not perceive a need for written information to appraise a locum GP. One hundred and twenty-two persons with spinal cord injury (95%) did not feel that provision of written information would cause needless anxiety to them; only four (3%) felt the other way. One hundred and nineteen (93%) individuals with spinal cord injury wished to receive written information about changes in their medical condition after a readmission to the spinal unit, while six (5%) did not wish to receive such information.
Conclusion: Although the vast majority of people with spinal cord injury reported they wished to receive written information, a small proportion of patients did not wish to receive such information. Acceptance of written information is not universal and clinicians must ensure that provision of written information to people with spinal cord injury should be tailored to the needs of individual patients.