Affiliations: [a] Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA
| [b] Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| [c] Department of Neurology, Washington University School of Medicine, St. Louis, MO, USA
| [d] Department of Psychiatry, Rutgers-Robert Wood Johnson Medical School, Piscataway, NJ, USA
| [e] Department of Pathology, Rowan School of Medicine, Stratford, NJ, USA
| [f] Department of Psychological and Brain Sciences, University of Massachusetts, Amherst, MA, USA
Correspondence to: Noelle E. Carlozzi, PhD, University of Michigan, Department of Physical Medicine & Rehabilitation, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G213, Ann Arbor, MI 48109-2800, USA. Tel.: +1 734 763 8917; Fax: +1 734 763 7186; E-mail: [email protected].
Abstract: Background:Social health is an important concern in persons with Huntington’s disease (HD); however, there is little literature examining this construct in this population. Objective:While cross-sectional data supports the clinical utility of two Neuro-QoL social health measures in persons with HD, data is still needed to establish their longitudinal validity. Methods:Participants (N = 358) completed baseline and at least one follow-up (12- and 24-month) assessment that included the completion of Neuro-QoL Social Health computer adaptive tests (CATs) and short forms (for Ability to Participate in Social Roles and Activities [SRA] and Satisfaction with SRA). Test-retest reliability was examined using intra class correlations, and one-way ANOVAs with Bonferroni post-hoc contrasts were used to determine whether there were group differences among premanifest, early- and late-stage HD participants on the Social health measures. In addition, standardized response means were used to examine longitudinal responsiveness, and mixed or general linear models were used to examine change over time (relative to self-reported change on an associated anchor item about social health and clinician-rated change based on Total Functional Capacity scores from the UHDRS). Results:Test-retest reliability of the measures was excellent (ICCs ranged from 0.82 to 0.87 across the different measures) and persons with greater disease burden reported more problems with social health than those at earlier stages in the disease process (all p < 0.0001). Responsiveness was supported for all measures except the Ability to Participate in SRA CAT; participants who had self-reported or clinician-rated declines in health generally had 12- and 24-month declines on the Neuro-QoL measures. Conclusions:Findings indicate that these measures may be useful for studies attempting to assess change in social health over time.
Keywords: Huntington’s disease, patient-reported outcomes, health-related quality of life, social health, validity