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1.
Front Neurol ; 14: 1244657, 2023.
Article in English | MEDLINE | ID: mdl-38020645

ABSTRACT

Background: Walking and balance impairment are common sequelae of stroke and significantly impact functional independence, morbidity, and mortality. Adequate postural stability is needed for walking, which requires sufficient integration of sensory information between the visual, somatosensory, and vestibular centers. "Sensory reweighting" describes the normal physiologic response needed to maintain postural stability in the absence of sufficient visual or somatosensory information and is believed to play a critical role in preserving postural stability after stroke. However, the extent to which sensory reweighting successfully maintains postural stability in the chronic stages of stroke and its potential impact on walking function remains understudied. Methods: In this cross-sectional study, fifty-eight community-dwelling ambulatory chronic stroke survivors underwent baseline postural stability testing during quiet stance using the modified Clinical test of Sensory Interaction in Balance (mCTSIB) and assessment of spatiotemporal gait parameters. Results: Seventy-six percent (45/58) of participants showed sufficient sensory reweighting with visual and somatosensory deprivation for maintaining postural stability, albeit with greater postural sway velocity indices than normative data. In contrast, survivors with insufficient reweighting demonstrated markedly slower overground walking speeds, greater spatiotemporal asymmetry, and limited acceleration potential. Conclusion: Adequate sensory system reweighting is essential for chronic stroke survivors' postural stability and walking independence. Greater emphasis should be placed on rehabilitation strategies incorporating multisensory system integration testing and strengthening as part of walking rehabilitation protocols. Given its potential impact on outcomes, walking rehabilitation trials may benefit from incorporating formal postural stability testing in design and group stratification.

2.
J Pediatr Rehabil Med ; 14(4): 681-689, 2021.
Article in English | MEDLINE | ID: mdl-34897106

ABSTRACT

PURPOSE: The objective of this study was to describe the knowledge, attitudes, and practices related to caring for youth with SB within a statewide pediatric primary care medical home network. METHODS: Health care professionals who were members of the Pennsylvania Medical Home Program (PAMHP) statewide network were surveyed on sociological demographics, confidence in and knowledge of topics that impact the spina bifida (SB) population, education on SB, designating responsibility of care, tasks completed in the office, and transition from pediatric to adult care from October 2016 through November 2016. RESULTS: Among 67 respondents, 78%believed counseling families/caregivers about the impact of SB on everyday life was a shared responsibility between primary care physicians (PCP) and SB clinics. Eighty five percent of participants indicated they had exposure to SB through clinical courses or didactics in training but only 54%of participants felt knowledgeable on the impact of SB on everyday life. CONCLUSION: Findings suggest a need for increased educational efforts, improved awareness of SB, and access to evidence-based guidelines for PCPs to promote accessible and coordinated care to individuals with SB.


Subject(s)
Spinal Dysraphism , Transition to Adult Care , Adolescent , Adult , Caregivers , Child , Humans , Patient-Centered Care , Spinal Dysraphism/therapy , Surveys and Questionnaires
3.
PLoS One ; 12(3): e0171114, 2017.
Article in English | MEDLINE | ID: mdl-28257414

ABSTRACT

The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context.


Subject(s)
Outcome Assessment, Health Care/statistics & numerical data , Patient Reported Outcome Measures , Patients/statistics & numerical data , Focus Groups , Guidelines as Topic , Humans , Surveys and Questionnaires
4.
Int J Telerehabil ; 5(1): 3-16, 2013.
Article in English | MEDLINE | ID: mdl-25945209

ABSTRACT

The purpose of this study was to gather information regarding the receptivity of clinicians, caregivers and family members, and adults with spina bifida (SB) to the use of a mHealth application, iMobile Health and Rehabilitation (iMHere) system. Surveys were administered to end user groups in conjunction with a conference presentation at the Spina Bifida Association's 38th Annual Conference. The survey results were obtained from a total of 107 respondents. Likert scale and qualitative results are provided in consideration of future application of the iMHere system in clinical practice. The results of this survey indicate respondents were receptive and supportive with regard to adopting such a system for personal and professional use. Challenges likely to be encountered in the introduction of the iMHere system are also revealed and discussed.

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