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 functions nerve disorders can have a devastating impact on a person’s quality of life. Patient reported outcome measures or 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.
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?
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.
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).