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Long-term Follow-up of Patients With Lyme Disease: Longitudinal Analysis of Clinical and Quality-of-life Measures.

ABSTRACT: Lyme disease is the most common vector-borne disease in the United States. Some patients report persistent or intermittent subjective symptoms of mild to moderate intensity after antibiotic treatment for Lyme disease. We sought to evaluate trends in clinical and quality-of-life (QOL) measures in a cohort of patients with Lyme disease enrolled in a natural history study at the National Institutes of Health from 2001-2014.QOL was measured using the self-administered 36-item Short Form Health Survey (SF-36) during study follow-up. Primary outcomes included mean physical (PCS) and mental (MCS) health QOL composite scores and reporting long-term (?2 years) symptoms, adjusted for Lyme disease stage and severity at diagnosis.Overall, 101 patients with an average follow-up time of 3.9 years (range, 0.5-11.3 years) were included. At first visit, overall mean QOL scores were below the US population mean for both PCS (45.6 ± 10.4) and MCS (47.3 ± 11.5) but increased to just above the national average after 3 years of follow-up for both PCS (50.7 ± 9.6) and MCS (50.1 ± 10.0). Baseline QOL scores were lowest in those with late disease (P < 0.01) but also increased by the end of follow-up to national averages. In multivariate analysis, the only factors significantly associated with long-term symptoms or lower QOL scores were other comorbidities unrelated to Lyme disease.Comorbid conditions can play a role in the reporting of long-term symptoms and overall QOL of Lyme disease patients and should be considered in the evaluation of these patients.NCT00028080.

SUBMITTER: Wills AB

PROVIDER: S-EPMC4885655 | biostudies-literature | 2016 Jun

REPOSITORIES: biostudies-literature

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Long-term Follow-up of Patients With Lyme Disease: Longitudinal Analysis of Clinical and Quality-of-life Measures.

Wills Aprielle B AB Spaulding Alicen B AB Adjemian Jennifer J Prevots D Rebecca DR Turk Siu-Ping SP Williams Carla C Marques Adriana A

Clinical infectious diseases : an official publication of the Infectious Diseases Society of America 20160329 12

<h4>Background</h4>Lyme disease is the most common vector-borne disease in the United States. Some patients report persistent or intermittent subjective symptoms of mild to moderate intensity after antibiotic treatment for Lyme disease. We sought to evaluate trends in clinical and quality-of-life (QOL) measures in a cohort of patients with Lyme disease enrolled in a natural history study at the National Institutes of Health from 2001-2014.<h4>Methods</h4>QOL was measured using the self-administe ...[more]

PMID: 27025825

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Project description:OBJECTIVE: Our objective was to review measures of health-related quality of life (HRQL) for long-term follow up in children after major trauma and to determine the measures that are suitable for a large age range, reliable and valid, and cover a substantial amount of the domains of functioning using the International Classification of Functioning, Disability, and Health (ICF) of the World Health Organization (WHO). METHODS: The Medline and EMBASE databases were searched in all years up to October 2007 for generic HRQL measures suitable for children aged 5-18 years old and validated in English or Dutch. Measures were reviewed with respect to the age range for which the measure was suitable and reliability, validity, and content related to the ICF. RESULTS: The search resulted in 1,235 hits and 21 related articles. Seventy-nine papers met the inclusion criteria, describing in total 14 measures: Child Health and Illness Profile Adolescent and Child Edition (CHIP-AE/CE), Child Health Questionnaire Child and Parent Forms (CHQ-CF87/PF50/PF28), DISABKIDS, Functional Status II (FS II)(R), Health Utilities Index Mark 2 (HUI 2), KIDSCREEN 52/27, KINDL, Pediatric Quality of Life Inventory (PedsQL), TNO Institute of Prevention and Health and the Leiden University Hospital (TNO-AZL), TNO-AZL Children's Quality Of Life (TACQOL), and Youth Quality of Life Instrument--Research Version (YQOL-R). Measures that were suitable for a large age range were CHQ-PF50/PF28, DISABKIDS, FS II(R), HUI 2, KIDSCREEN, PedsQL, and TACQOL. All measures had moderate to good psychometric properties, except for CHQ-PF50/PF28, KINDL, and TACQOL, which had either low internal consistency or bad test-retest reliability. The measures that covered more than six chapters of the ICF domains were CHIP-AE/CE, CHQ-CF87/PF50, DISABKIDS, KIDSCREEN-52, PedsQL, and TACQOL. CONCLUSIONS: DISABKIDS, KIDSCREEN 52, and PedsQL are suitable for long-term follow-up measurement of HRQL in children after major trauma. They cover a large age range, have good psychometric properties, and cover the ICF substantially.

Project description:INTRODUCTION: Acute kidney injury (AKI) is a serious complication in critically ill patients admitted to the Intensive Care Unit (ICU). We hypothesized that ICU survivors with AKI would have a worse health-related quality of life (HRQOL) outcome than ICU survivors without AKI. METHODS: We performed a long-term prospective observational study. Patients admitted for > 48 hours in a medical-surgical ICU were included and divided in two groups: patients who fulfilled RIFLE criteria for AKI and patients without AKI. We used the Short-Form 36 to evaluate HRQOL before admission (by proxy within 48 hours after admission of the patient), at ICU discharge, hospital discharge, 3 and 6 months following ICU discharge (all by patients). Recovery in HRQOL from ICU-admission onwards was assessed using linear mixed modelling. RESULTS: Between September 2000 and January 2007 all admissions were screened for study participation. We included a total of 749 patients. At six months after ICU discharge 73 patients with AKI and 325 patients without AKI could be evaluated. In survivors with and without AKI, the pre-admission HRQOL (by proxy) and at six months after ICU discharge was significantly lower compared with an age matched general population. Most SF-36 dimensions changed significantly over time from ICU discharge. Change over time of HRQOL between the different AKI Rifle classes (Risk, Injury, Failure) showed no significant differences. At ICU discharge, scores were lowest in the group with AKI compared with the group without AKI for the physical functioning, role-physical and general health dimensions. However, there were almost no differences in HRQOL between both groups at six months. CONCLUSIONS: The pre-admission HRQOL (by proxy) of AKI survivors was significantly lower in two dimensions compared with the age matched general population. Six months after ICU discharge survivors with and without AKI showed an almost similar HRQOL. However, compared with the general population with a similar age, HRQOL was poorer in both groups.

Dataset Information

Long-term Follow-up of Patients With Lyme Disease: Longitudinal Analysis of Clinical and Quality-of-life Measures.

Publications

Long-term Follow-up of Patients With Lyme Disease: Longitudinal Analysis of Clinical and Quality-of-life Measures.

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