1,721,114 research outputs found
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Caregiving for Children and Adults With Chronic Conditions: Introduction to the Special Issue
No full textValidation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)
No full textBackground: Quality of life (QOL)-primary ciliary dyskinesia (PCD) is the first disease-specific, health-related QOL instrument for PCD. Psychometric validation of QOL-PCD assesses the performance of this measure in adults, including its reliability, validity and responsiveness to change.
Methods: Seventy-two adults (mean (range) age: 33 years (18–79 years); mean (range) FEV1% predicted: 68 (26–115)) with PCD completed the 49-item QOL-PCD and generic QOL measures: Short-Form 36 Health Survey, Sino-Nasal Outcome Test 20 (SNOT-20) and St George Respiratory Questionnaire (SGRQ)-C. Thirty-five participants repeated QOL-PCD 10–14 days later to measure stability or reproducibility of the measure.
Results: Multitrait analysis was used to evaluate how the items loaded on 10 hypothesised scales: physical, emotional, role and social functioning, treatment burden, vitality, health perceptions, upper respiratory symptoms, lower respiratory symptoms and ears and hearing symptoms. This analysis of item-to-total correlations led to 9 items being dropped; the validated measure now comprises 40 items. Each scale had excellent internal consistency (Cronbach's α: 0.74 to 0.94). Two-week test–retest demonstrated stability for all scales (intraclass coefficients 0.73 to 0.96). Significant correlations were obtained between QOL-PCD scores and age and FEV1. Strong relationships were also found between QOL-PCD scales and similar constructs on generic questionnaires, for example, lower respiratory symptoms and SGRQ-C (r=0.72, p<0.001), while weak correlations were found between measures of different constructs.
Conclusions: QOL-PCD has demonstrated good internal consistency, test–retest reliability, convergent and divergent validity. QOL-PCD offers a promising tool for evaluating new therapies and for measuring symptoms, functioning and QOL during routine care
Study protocol, rationale and recruitment in a European multi-centre randomized controlled trial to determine the efficacy and safety of azithromycin maintenance therapy for 6 months in primary ciliary dyskinesia
Get PDFBackground: Clinical management of primary ciliary dyskinesia (PCD) respiratory disease is currently based on improving mucociliary clearance and controlling respiratory infections, through the administration of antibiotics. Treatment practices in PCD are largely extrapolated from more common chronic respiratory disorders, particularly cystic fibrosis, but no randomized controlled trials (RCT) have ever evaluated efficacy and safety of any pharmacotherapeutics used in the treatment of PCD. Maintenance therapy, with the macrolide antibiotic azithromycin, is currently widely used in chronic respiratory diseases including PCD. In addition to its antibacterial properties, azithromycin is considered to have beneficial anti-inflammatory and anti-quorum-sensing properties.The aim of this study is to determine the efficacy of azithromycin maintenance therapy for 6 months on respiratory exacerbations in PCD. The secondary objectives are to evaluate the efficacy of azithromycin on lung function, ventilation inhomogeneity, hearing impairment, and symptoms (respiratory, sinus, ears and hearing) measured on a PCD-specific health-related quality of life instrument, and to assess the safety of azithromycin maintenance therapy in PCD.Methods: The BESTCILIA trial is a European multi-centre, double-blind, randomized, placebo-controlled, parallel group study. The intervention is tablets of azithromycin 250/500 mg according to body weight or placebo administered three times a week for 6 months. Subjects with a confirmed diagnosis of PCD, age 7–50 years, are eligible for inclusion. Chronic pulmonary infections with Gram-negative bacteria or any recent occurrence of non-tuberculous mycobacteria are exclusion criteria. The planned number of subjects to be included is 125. The trial has been approved by the Research Ethics Committees of the participating institutions.Discussion: We present a study protocol of an ongoing RCT, evaluating for the first time, the efficacy and safety of a pharmacotherapeutic treatment for patients with PCD. The RCT evaluates azithromycin maintenance therapy, a drug already commonly prescribed in other chronic respiratory disorders. Furthermore, the trial will utilize the Lung clearance index and new, PCD-specific quality of life instruments as outcome measures for PCD. Recruitment is hampered by frequent occurrence of Pseudomonas aeruginosa infection, exacerbations at enrolment, and the patients’ perception of disease severity and necessity of additional management and treatment during trial participation.Trial registration: EudraCT 2013-004664-58 (date of registration: 2014-04-08).<br/
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Coping Efficacy as a Moderator of Disease Severity and Health-Related Quality of Life in Adolescents with Cystic Fibrosis
No full textAdolescents with cystic fibrosis (CF) face unique stressors that require effective coping strategies. Although research suggests that coping may be an important moderator of adjustment to stress, previous studies have utilized generic coping measures that are not specific to the disease or context. Using the Role-Play Inventory of Situations and Coping Strategies (RISCS), a context-specific coping measure for adolescents with CF, the current study examined whether coping efficacy moderated the relationship between disease-related stress and health-related quality of life. Additionally, this study investigated the impact of two family-based behavioral interventions on adolescents’ coping skills: Behavioral Family Systems Therapy (BFST) and the Family Education Program (FEP). Although no direct effects of coping on HRQOL at baseline were found, resulted showed that effective coping buffered the negative effects of disease severity and stressor frequency on HRQOL in several domains. In addition, some evidence indicated that at the most severe end of the severity continuum, there may be thresholds at which effective coping strategies no longer exert their beneficial effects. Longitudinal models revealed that improvements in coping skills were associated with positive changes in HRQOL in different domains, depending upon treatment group. These findings highlighted the utility of using context-specific, sensitive coping measures when examining the moderating effects of coping, and the importance of identifying adolescents with poor coping skills and providing tailored interventions.</p
A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD
Get PDFPrimary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis, hearing impairment and sub-fertility. We have developed the first multidimensional measure to assess health-related quality of life (HRQoL) in adults with PCD (QOL-PCD). Following a literature review and expert panel meeting, open-ended interviews with patients investigated the impact of PCD on HRQoL in the UK and North America (n=21). Transcripts were content analysed to derive saturation matrices. Items were rated for relevance by patients (n=49). Saturation matrices, relevance scores, literature review, evaluation of existing measures, and expert opinion contributed to development of a preliminary questionnaire. The questionnaire was refined following cognitive interviews (n=18). Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL-PCD includes 48 items covering the following seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. Cognitive testing confirmed that content was comprehensive and the items were well-understood by respondents. Content validity and cognitive testing supported the items and structure. QOL-PCD has been translated into other languages and is awaiting psychometric testing
Going Beyond Counting First Authors in Author Co-citation Analysis
Get PDFThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Get PDF“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
Get PDFWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
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Healthcare Provider Acceptability of a Behavioral Intervention to Promote Adherence
Get PDFAdherence to medical regimens is a difficult and costly issue among individuals with chronic illness, with rates of adherence generally less than 50%. Many types of adherence interventions have been developed to address this issue, including educational, organizational, and multi-component or behavioral interventions. Of these interventions, multi-component or behavioral have been the most effective at improving adherence, yet they have failed to produce lasting gains in adherence or clinical outcomes. This may be due to providers’ and consumers’ lack of perceived acceptability of the intervention. Treatment acceptability may significantly affect how an intervention is implemented, as well as its efficacy. This study assessed the acceptability of a brief, behavioral intervention to improve adherence in adolescents with cystic fibrosis (CF) implemented by healthcare providers within the specialty clinic setting. Using the Behavioral Interventionist Satisfaction Survey (BISS), this study: 1) assessed HCPs’ perceptions of the acceptability, feasibility, and utility of problem-solving, 2) examined associations among the six scales of the BISS, 3) determined the impact of HCP characteristics on BISS scale scores, 4) examined associations between BISS scale scores and HCPs’ treatment fidelity, and 5) content analyzed qualitative responses on the BISS. The BISS was found to be psychometrically valid, and scores on the BISS indicated HCPs found PS highly acceptable, feasible, and generalizable. No differences in BISS scale scores were found based on HCP characteristics. HCPs reported encountering significant clinic-level barriers while implementing PS.</p
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