Browsing by Subject "health-related quality of life"

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    Effect of four monthly doses of a human monoclonal anti-FGF23 antibody (KRN23) on quality of life in X-linked hypophosphatemia
    (Elsevier, 2016-12) Ruppe, Mary D.; Zhang, Xiaoping; Imel, Erik A.; Weber, Thomas J.; Klausner, Mark A.; Ito, Takahiro; Vergeire, Maria; Humphrey, Jeffrey S.; Glorieux, Francis H.; Portale, Anthony A.; Insogna, Karl; Peacock, Munro; Carpenter, Thomas O.; Department of Medicine, IU School of Medicine
    X-linked hypophosphatemia (XLH) is characterized by lower extremity deformities that lead to bone and/or joint pain that result from decreased renal tubular reabsorption leading to hypophosphatemia caused by elevated levels of fibroblast growth factor 23 (FGF23). Objective Validate the use of SF-36v2 Health Survey (SF-36v2) and the Western Ontario and McMaster Osteoarthritis Index (WOMAC) to measure previously unstudied health-related quality of life (HRQoL) in XLH patients and determine the change in HRQoL before and after treatment with KRN23, a human monoclonal anti-FGF23 antibody. Methods Twenty-eight adult outpatients with XLH received up to four doses of KRN23 administered subcutaneously every 28 days. General HRQoL was measured with the SF-36v2 and condition-related HRQoL with the WOMAC at baseline and study endpoint as a secondary outcome of a Phase 1/2, open-label, multicenter, dose-escalation trial. Results Testing for scale discriminant validity and convergent-divergent validity supported the use of these scales in the assessment of HRQoL in XLH. Both instruments indicated impairment of physical function at baseline with all mean scores showing a trend to improved health at study endpoint compared to baseline. When corrected for multiple comparisons, the score for Role Limitations due to physical health on the SF-36v2 which measures the patient's perception of their own chronic functional impairments due to poor physical health remained significantly improved (P < 0.05), increasing to the mean score of US adults. For the WOMAC, Physical Functioning and Stiffness scores were significantly improved (P < 0.05). Conclusion KRN23 administration was associated with significantly improved patient perception of their Physical Functioning and Stiffness due to their disease. This study demonstrates that the SF-36v2 and WOMAC are valid tools for assessing HRQoL in XLH.
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    HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)
    (Springer, 2016-10) Carlozzi, N. E.; Schilling, S. G.; Lai, J.-S.; Paulsen, J. S.; Hahn, E. A.; Perlmutter, J. S.; Ross, C. A.; Downing, N. R.; Kratz, A. L.; McCormack, M. K.; Nance, M. A.; Quaid, Kimberly A.; Stout, J. C.; Gershon, R. C.; Ready, R. E.; Miner, J. A.; Barton, S. K.; Perlman, S. L.; Rao, S. M.; Frank, S.; Shoulson, I.; Marin, H.; Geschwind, M. D.; Dayalu, P.; Goodnight, S. M.; Cella, D.; Department of Medicine, IU School of Medicine
    Purpose Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL—Quality of Life in Neurological Disorders and PROMIS—Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content. Methods New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD. Results Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose. Conclusions HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD.
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    Health-related quality of life in children with untreated intermittent exotropia and their parents
    (Elsevier, 2021) Holmes, Jonathan M.; Hercinovic, Amra; Melia, B. Michele; Leske, David A.; Hatt, Sarah R.; Chandler, Danielle L.; Dean, Trevano W.; Kraker, Raymond T.; Enyedi, Laura B.; Wallace, David K.; Mohney, Brian G.; Cotter, Susan A.; Ophthalmology, School of Medicine
    Purpose To determine whether health-related quality of life (HRQOL) scores improved or worsened over 3 years of observation in childhood intermittent exotropia without treatment. Methods A total of 111 children aged 3-11 years with intermittent exotropia were assigned to observation in a previously reported randomized trial comparing patching with observation. The intermittent exotropia questionnaire (IXTQ) was administered at baseline, 6 months, and 36 months. Rasch-calibrated IXTQ domain scores (Child, Proxy, Parent-psychosocial, Parent-function, and Parent-surgery) were compared between time points. The Child IXTQ was administered only to children ≥5 years of age (n = 78). Results Overall, Child IXTQ and Proxy IXTQ scores showed no significant change over 36 months (mean improvement from baseline to 36 months of 3.2 points [95% CI, −1.9 to 8.2] and −2.4 points [95% CI: −7.9 to 3.1], resp.). By contrast, Parent-psychosocial, Parent-function, and Parent-surgery domain scores all improved over 36 months (mean improvements of 12.8 points [95% CI, 5.9-19.6] and 14.2 points [95% CI, 8.0-20.3] and 18.5 points [95% CI, 9.7-27.3], resp.). Conclusions HRQOL of children with intermittent exotropia remains stable with observation over 3 years (by both child and proxy report), whereas parental HRQOL improves.
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    Measures of Health-Related Quality of Life Outcomes in Pediatric Neurosurgery: Literature Review
    (Elsevier, 2019-02) Desai, Virendra R.; Gadgil, Nisha; Saad, Shahbaz; Raskin, Jeffrey S.; Lam, Sandi K.; Neurological Surgery, School of Medicine
    Background Improving value in healthcare means optimizing outcomes and minimizing costs. The emerging pay-for-performance era requires understanding of the effect of healthcare services on health-related quality of life (HRQoL). Pediatric and surgical subspecialties have yet to fully integrate HRQoL measures into practice. The present study reviewed and characterized the HRQoL outcome measures across various pediatric neurosurgical diagnoses. Methods A literature review was performed by searching PubMed and Google Scholar with search terms such as “health-related quality of life” and “pediatric neurosurgery” and then including the specific pathologies for which a HRQoL instrument was found (e.g., “health-related quality of life” plus “epilepsy”). Each measurement was evaluated by content and purpose, relative strengths and weaknesses, and validity. Results We reviewed 68 reports. Epilepsy, brain tumor, cerebral palsy, spina bifida, hydrocephalus, and scoliosis were diagnoses found in reported studies that had used disease-specific HRQoL instruments. Information using general HRQoL instruments was also reported. Internal, test–retest, and/or interrater reliability varied across the instruments, as did face, content, concurrent, and/or construct validity. Few instruments were tested enough for robust reliability and validity. Significant variability was found in the usage of these instruments in clinical studies within pediatric neurosurgery. Conclusions The HRQoL instruments used in pediatric neurosurgery are currently without standardized guidelines and thus exhibit high variability in use. Clinicians should support the development and application of these methods to optimize these instruments, promote standardization of research, improve performance measures to reflect clinically modifiable and meaningful outcomes, and, ultimately, lead the national discussion in healthcare quality and patient-centered care.
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    Occupational Therapy Interventions for Improving Health-Related Quality of Life in Adults Post-Stroke: A Rapid Systematic Review
    (2021-05) Stiens, Maria; Johnson, Lauryn; Ellis, Nicole; Havala, Claire; Lyon, Braegan; Chase, Tony; Petrenchik, Terry; Department of Occupational Therapy, School of Health and Human Sciences
    This rapid systematic review of the literature examines 24 articles from the databases of Pubmed and CINAHL to determine the evidence and effectiveness of occupational therapy (OT) interventions in improving health-related quality of life (HRQOL) of adults post-stroke. Many adults report a decline in life satisfaction and occupational performance following a stroke due to various physical, cognitive, and emotional impairments. OT is a key component of stroke rehabilitation; therefore, there is a high need for effective and evidence-based occupational interventions for individuals post-stroke. Findings of this rapid systematic review reveal that the use of occupation-based activities has reasonable yet limited evidence to support its effectiveness in improving HRQOL for adults post-stroke. This review supports the premise that HRQOL, including physical wellbeing and occupational performance, can be positively affected through the use of several commonly used OT interventions. Specifically, there is strong evidence to support the use of robot-assisted therapy and bilateral upper extremity training for improving physical wellbeing. Additionally, there is strong evidence supporting the use of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach for improving occupational performance. All other interventions included in this review ranged from low to moderate levels of evidence in improving HRQOL, therefore, future studies with larger sample sizes and equal treatment groups should be conducted to confirm the results of this rapid systematic review.
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    Patient Activation with Knowledge, Self-Management, and Confidence in Chronic Kidney Disease
    (Wiley, 2016-03) Johnson, Michelle L.; Zimmerman, Lani; Welch, Janet L.; Hertzog, Melody; Pozehl, Bunny; Plumb, Troy; IU School of Nursing
    Background Chronic kidney disease is a growing health problem on a global scale. The increasing prevalence of chronic kidney disease presents an urgent need to better understand the knowledge, confidence and engagement in self-managing the disease. Objectives This study examined group differences in patient activation and health-related quality of life, knowledge, self-management and confidence with managing chronic disease across all five stages of chronic kidney disease. Design The study employed a descriptive correlational design. Settings Participants were recruited from five primary care, three nephrology clinics and one dialysis centre in two Midwestern cities in the United States. Participants The convenience sample included 85 adults with hypertension, diabetes mellitus and chronic kidney disease, including kidney failure, who spoke English. Measurements Seven measurements were used to collect data via telephone interviews with participants not receiving haemodialysis, and face-to-face interviews with those receiving haemodialysis at the beginning of their treatment session. Results Analyses indicated that half the participants were female (50.58%), the mean age was 63.21 years (SD = 13.11), and participants with chronic kidney disease stage 3 were the most activated. Post hoc differences were significant in patient activation and blood pressure self-management and anxiety across chronic kidney disease stages, excluding stage 5. Conclusion Engaging patients in the self-management of their health care and enhancing patients’ ability to self-manage their blood pressure may work to preserve kidney health. Healthcare providers should collaborate with patients to develop strategies that will maintain patients’ health-related quality of life, like reducing anxiety as kidney disease progress.