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Browsing by Subject "Health related quality of life"
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Item Health-related Quality of Life in a Prospective Study of Ultrasound to Detect Cystic Fibrosis-related Liver Disease in Children(Wiley, 2022) Schwarzenberg, Sarah Jane; Palermo, Joseph J.; Ye, Wen; Huang, Suiyuan; Magee, John C.; Alazraki, Adina; Freeman, A. Jay; Harned, Roger; Karmazyn, Boaz; Karnsakul, Wikrom; Leung, Daniel H.; Ling, Simon C.; Masand, Prakash; Molleston, Jean P.; Murray, Karen F.; Navarro, Oscar M.; Nicholas, Jennifer L.; Otto, Randolph K.; Paranjape, Shruti M.; Siegel, Marilyn J.; Stoll, Janis; Towbin, Alexander J.; Narkewicz, Michael R.; Alonso, Estella M.; CFLD NET; Pediatrics, School of MedicineObjectives: Cystic fibrosis liver disease (CFLD) begins early in life. Symptoms may be vague, mild, or nonexistent. Progressive liver injury may be associated with decrements in patient health before liver disease is clinically apparent. We examined Health-Related Quality of Life (HRQOL) in children enrolled in a multi-center study of CFLD to determine the impact of early CFLD on general and disease-specific QOL. Methods: Ultrasound (US) patterns of normal (NL), heterogeneous (HTG), homogeneous (HMG), or nodular (NOD) were assigned in a prospective manner to predict those at risk for advanced CFLD. Parents were informed of results. We assessed parent/child-reported (age ≥5 years) HRQOL by PedsQL 4.0 Generic Core and CF Questionnaire-revised (CFQ-R) prior to US and annually. HRQOL scores were compared by US pattern at baseline (prior to US), between baseline and 1 year and at 5 years. Multivariate analysis of variance (MANOVA) with Hotelling-Lawley trace tested for differences among US groups. Results: Prior to US, among 515 participants and their parents there was no evidence that HTG or NOD US was associated with reduced PedsQL/CFQ-R at baseline. Parents of NOD reported no change in PedsQL/CFQ-R over the next year. Child-report PedsQL/CFQ-R (95 NL, 20 NOD) showed improvement between baseline and year 5 for many scales, including Physical Function. Parents of HMG children reported improved CFQ-R scores related to weight. Conclusions: Early undiagnosed or pre-symptomatic liver disease had no impact on generic or disease-specific HRQoL, and HRQoL was remarkably stable in children with CF regardless of liver involvement.Item Investigating Health Related Quality of Life in People with Schizophrenia(2019-02) Janela, Carlos M.; Draucker, Claire Burke; Carpenter, Janet S.; Oruche, Ukamaka M.; Minor, Kyle S.Schizophrenia is a serious mental illness that significantly lessens health-related quality of life (HRQoL). A better understanding of HRQoL is needed to inform holistic and patient-centered treatments for schizophrenia. The purpose of this dissertation is to conduct an in-depth exploration of HRQoL in people with schizophrenia. The dissertation includes three components. The first component is an integrative literature review aimed at identifying factors associated with physical quality of life (QoL) in people with schizophrenia. The review reveals that symptoms of schizophrenia, depression, obesity or body mass index, and physical activity are associated with physical QoL in this population. The second and third components are based on illness narratives of 20 people with schizophrenia who had participated in a larger study of individuals diagnosed with serious mental illness. The second component of the dissertation is a qualitative descriptive study conducted to describe common HRQoL concerns in people with schizophrenia. The results indicate that these concerns were related to social relationships, psychiatric symptoms, psychiatric care, and employment. The third component of the dissertation is a parallel convergent mixed-methods study conducted to explore whether computerized lexical analysis (CLA) of illness narratives of people with schizophrenia can reveal their HRQoL concerns. CLA is an automatized process that counts words in text data and sorts them into pre-defined word categories. The results provide preliminary support for the potential use of CLA to efficiently assess HRQoL in people with schizophrenia as the CLA identified some of the HRQoL concerns that had been identified in the prior qualitative descriptive study. The results of the three studies reveal the complexity of the phenomenon of HRQoL in people with schizophrenia and can inform the development of strategies to identify and promote HRQoL in this population.Item PROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring quality of life in chronic liver disease(Wolters Kluwer, 2023-12) Desai, Archita P.; Madathanapalli, Abhishek; Tang, Qing; Orman, Eric S.; Lammert, Craig; Patidar, Kavish R.; Nephew, Lauren D.; Ghabril, Marwan; Monahan, Patrick O.; Chalasani, Naga; Medicine, School of MedicineBackground and Aims: The Patient-Reported Outcomes Measurement Information System (PROMIS) is increasingly used to measure health-related quality of life, yet, it has not been well-studied in chronic liver disease (CLD). This study compares PROMIS Profile-29 to Short-Form Health Survey (SF-36) and Chronic Liver Disease Questionnaire (CLDQ) in patients with CLD. Approach and Results: In all, 204 adult outpatients with CLD completed PROMIS-29, CLDQ, SF-36 and usability questionnaires. Mean scores were compared between groups, the correlation between domain scores was assessed, and floor/ceiling effects were calculated. Etiologies of CLD were NAFLD (44%), hepatitis C (16%), and alcohol (16%). Fifty-three percent had cirrhosis and 33% were Child-Pugh B/C with a mean model for end-stage liver disease score of 12.0. In all 3 tools, the poorest scores were in physical function and fatigue. The presence of cirrhosis or complications was associated with worse scores in most PROMIS Profile-29 domains, indicating known group validity. Strong correlations (r ≥ 0.7) were present between Profile-29 and SF-36 or CLDQ domains measuring similar concepts, indicating strong convergent validity. Profile-29 was completed faster than SF-36 and CLDQ (5.4 ± 3.0, 6.7 ± 3.3, 6.5 ± 5.2 min, p = 0.003) and rated equally on usability. All CLDQ and SF-36 domains reached the floor or ceiling, while none were noted for Profile-29. These floor/ceiling effects were magnified when assessed in those with and without cirrhosis, indicating the improved depth of measurement by Profile-29. Conclusions: Profile-29 is a valid, more efficient, well-received tool that provides an improved depth of measurement when compared to SF-36 and CLDQ and, therefore, an ideal tool to measure general health-related quality of life in CLD.