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Full-Text Articles in Rehabilitation and Therapy
Giving Credence To The Experience Of X-Linked Hypophosphatemia In Adulthood: An Interprofessional Mixed-Methods Study, Melissa Hughes, Carolyn Macica, Catherine Meriano, Maya Doyle
Giving Credence To The Experience Of X-Linked Hypophosphatemia In Adulthood: An Interprofessional Mixed-Methods Study, Melissa Hughes, Carolyn Macica, Catherine Meriano, Maya Doyle
Journal of Patient-Centered Research and Reviews
Purpose: X-linked hypophosphatemia (XLH) is a rare X-linked dominant metabolic bone disease, often diagnosed in childhood but causing increasing physical debilitation and pain in adulthood. Physical comorbidities of XLH in adulthood include pervasive and early-onset degenerative arthritis, mineralizing enthesophytes and osteophytes, osteomalacia and pseudofracture, dental abscesses, and hearing loss.
Methods: This mixed-methods analysis included physical findings, diagnostic imaging, occupational and physical therapy assessments, and semi-structured interviews by social work to understand the functional outcomes and lived experience of XLH in adulthood, through connections between qualitative data obtained by social work and occupational therapy with the quantitative findings from other disciplines. …
Patient- And Family-Identified Problems Of Traumatic Brain Injury: Value And Utility Of A Target Outcome Approach To Identifying The Worst Problems, Laraine Winter, Helene J. Moriarty, Catherine V. Piersol, Tracey Vause-Earland, Keith Robinson, Brian Newhart
Patient- And Family-Identified Problems Of Traumatic Brain Injury: Value And Utility Of A Target Outcome Approach To Identifying The Worst Problems, Laraine Winter, Helene J. Moriarty, Catherine V. Piersol, Tracey Vause-Earland, Keith Robinson, Brian Newhart
Journal of Patient-Centered Research and Reviews
Purpose
This study aimed to identify the sequelae of traumatic brain injury (TBI) that are most troubling to veterans with TBI and their families and identify veteran-family differences in content and ranking. Instead of standardized measures of symptom frequency or severity, which may be insensitive to change or intervention effects, we used a target outcome measure for veterans with TBI and their key family members, which elicited open-ended reports concerning the three most serious TBI-related problems. This was followed by Likert-scaled ratings of difficulty in managing the problem.
Methods
In this cross-sectional study, interviews were conducted in veterans’ homes. Participants …