GEM-TECH: A ‘GENERAL EXPERIENCE OF MEDICAL TECHNOLOGY’ MEASURE FOR CAREGIVERS AND CHILDREN WITH MEDICAL COMPLEXITY (CO-CMC)
Author(s)
Nora Fayed, PhD1, Eyal Cohen, MD, MSc2;
1Queen's University, Associate Professor, Kingston, ON, Canada, 2The Hospital for Sick Children, Toronto, ON, Canada
1Queen's University, Associate Professor, Kingston, ON, Canada, 2The Hospital for Sick Children, Toronto, ON, Canada
OBJECTIVES: Children with medical complexity, encompass multiple categories of children, (with respiratory, neurological, rare, and metabolic diseases). They have: dependency on medical technology for survival, (like feeding and respiratory devices), chronicity, and high healthcare needs. Collaboration with caregiver-child dyads (Co-CMC) from this group, showed that ‘experience of caregiving with medical technology’, was a priority outcome, but no tools were available. Our objective was to develop and test, a patient reported outcome measure, of the general experience of medical technology (GEM-Tech) for Co-CMC.
METHODS: In Phase I, (item-generation), content was derived from Co-CMC interviews of diverse types of enteral feeding and respiratory devices. Lived-experience caregivers of CMC on the team, flagged poor candidate items or rephrased others, using a method reported elsewhere, based on item importance, clarity, acceptability, and uni-dimensionality.Phase II, (field-testing), was conducted on candidate uni-dimensional items using Rasch analysis, for Co-CMC, 0 to 21-years of age, with a new piece of medical technology, or an online community sample.
RESULTS: Phase I, (N=32) Co-CMC generated 165 multi-dimensional items, reduced and re-worded into 129 items by lived-experience experts. Of these, 53 items met criteria of uni-dimensionality and non-domain specific experiences for phase II.Phase II, included 355 observations of N=119 Co-CMC, for mostly new enteral (86%) or respiratory (14%) devices. Seventeen items were retained, 5 of which, required response option collapse to fit the model. The overall person-separation was 0.79, and person-item coverage ranged from -4.8 to 0.7 standard person-scores.A subgroup of n=132 caregivers with new devices, completed the GEM-Tech at baseline and after X=6.23 months of follow-up care, n=42 (42%), showed significant standard score improvement.
CONCLUSIONS: A 17-item Rasch-validated scale, can be used to assess Co-CMC experience of medical technology in patient-centred research, and health-care quality improvement. GEM-Tech would benefit from further validation by testing responsiveness relative to patient-centred devices.
METHODS: In Phase I, (item-generation), content was derived from Co-CMC interviews of diverse types of enteral feeding and respiratory devices. Lived-experience caregivers of CMC on the team, flagged poor candidate items or rephrased others, using a method reported elsewhere, based on item importance, clarity, acceptability, and uni-dimensionality.Phase II, (field-testing), was conducted on candidate uni-dimensional items using Rasch analysis, for Co-CMC, 0 to 21-years of age, with a new piece of medical technology, or an online community sample.
RESULTS: Phase I, (N=32) Co-CMC generated 165 multi-dimensional items, reduced and re-worded into 129 items by lived-experience experts. Of these, 53 items met criteria of uni-dimensionality and non-domain specific experiences for phase II.Phase II, included 355 observations of N=119 Co-CMC, for mostly new enteral (86%) or respiratory (14%) devices. Seventeen items were retained, 5 of which, required response option collapse to fit the model. The overall person-separation was 0.79, and person-item coverage ranged from -4.8 to 0.7 standard person-scores.A subgroup of n=132 caregivers with new devices, completed the GEM-Tech at baseline and after X=6.23 months of follow-up care, n=42 (42%), showed significant standard score improvement.
CONCLUSIONS: A 17-item Rasch-validated scale, can be used to assess Co-CMC experience of medical technology in patient-centred research, and health-care quality improvement. GEM-Tech would benefit from further validation by testing responsiveness relative to patient-centred devices.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
MT18
Topic
Medical Technologies
Disease
SDC: Neurological Disorders, SDC: Pediatrics, SDC: Rare & Orphan Diseases