Trauma and compression to the nerves of the hand results in paralysis and a loss of sensory feedback.
Given the importance of good hand function for everyday activities, nerve disorders can have a devastating impact on a person’s quality of life. Patient reported outcome measures (PROMs) provide a means for evaluating this impact. They aim to capture how a person functions or feels in relation to a health condition, coming directly from the patient without any interpretation from another person. The assessment of patient reported outcomes is now advocated for many health conditions and there is a consensus that they play an important role in clinical practice and research. There are currently no PROMs available specifically for people with a range of hand nerve conditions. To address this need the Impact of HaND Nerve Disorders Scale or I-HaND Scale, was developed.
key research questions
The I-HaND study addresses the following questions:
- What is the lived experience of a person with a hand nerve disorder?
- What should be the content of a new patient-reported outcome measure for hand nerve disorders?
- How relevant and acceptable to patients is the newly developed I-HaND?
- How reliable, valid and responsive is the I-HaND?
research design and outputs
A three-phase study using mixed methods was undertaken to develop and validate the I-HaND. Face-to-face interviews with 14 patients and subsequent pilot-testing with 61 patients resulted in the development of the content of a new 32-item PROM. A final longitudinal, repeated-measures validation study with 82 patients assessed the psychometric properties of the I-HaND.
Patients found the I-HaND to be relevant and highly acceptable. Evaluation of its psychometric properties confirmed that the I-Hand has excellent test-retest reliability, construct validity and is responsive to change over three months.
The 32-item I-HaND scale is the first condition-specific PROM validated for people with a range of hand nerve disorders.
the research team
Principal Investigator: Dr Mark Ashwood (School of Health Sciences, UEA)
External collaborators/Local Principal Investigators: Mrs Debbie Larson; Mrs Kathryn Johnson; Mrs Caroline Miller; Mr Dominic Power; Mrs Nikki Burr; Mrs Megan Blakeway; Ms Sarah Mee; Mrs Raelene Marx; Dr Niall Fitzpatrick; Miss Sarah Turner and the members of their clinical teams.
Mark Ashwood was funded through a University of East Anglia, Faculty of Medicine and Health Sciences PhD Studentship. Christina Jerosch-Herold was funded through a National Institute for Health Research (NIHR) Senior Research Fellowship (NIHR-SRF-2012-05-119).