Study design: Development of Tetraplegia Hand Activity Questionnaire (THAQ).
Setting: Patients and spinal cord injury (SCI) professionals from five rehabilitation centres in the Netherlands and Belgium.
Objective: To construct a disease-specific questionnaire to evaluate interventions to the arm-hand of tetraplegics in terms of gained and lost activities relevant to the patient.
Methods: All arm-hand function-related activities were inventoried by examining existing scales and interviewing spinal cord injury patients and professionals in the field. Subsequently, item reduction was achieved; first, in the technical construction by incorporating all activities in an item list, then reducing the list by selecting the items most likely to be sensitive to change after surgical or functional electro stimulation interventions on the arm-hand as judged by an expert panel, using a Delphi method.
Results: The arm-hand-related activity inventory comprised 652 activities. The technical construction of the items and the Delphi procedure resulted in a questionnaire with 153 items. The experts considered many of the 'new' activities more relevant for the evaluation of hand function interventions than those found in scales studied in the literature. This is reflected in a relatively large proportion of new activities (69%) for the item list of the THAQ, and even more in the domains work/admin/telecom (88%) and leisure (100%).
Conclusion: The questionnaire constructed to assess hand function-related activities contains relevant activities to evaluate arm-hand function-related interventions for tetraplegic SCI patients.