Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
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Randomized Controlled Trial
Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation.
Patient-reported outcomes (PROs) promote patient-centered care by using PRO research results ("group-level data") to inform decision making and by monitoring individual patient's PROs ("individual-level data") to inform care. We investigated the interpretability of current PRO data presentation formats. ⋯ This study has identified preferences and opportunities for improving on current formats for PRO presentation and will inform development of best practices for PRO presentation. Both patients and clinicians prefer line graphs across group-level data and individual-level data formats, but clinicians prefer greater detail (e.g., statistical details) for group-level data.
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Patient satisfaction research in chronic pain treatment is scarce internationally and is nonexistent in Chinese communities like Hong Kong. This longitudinal study examined the relationships between medical adherence, pain treatment satisfaction, disability, and quality of life (QoL) in a sample of Chinese patients with chronic pain. ⋯ Distinct trajectories in pain treatment satisfaction were displayed in the current sample of Chinese patients with different disability grading chronic pain. Within pain treatment, only medication characteristics significantly impacted patients' medical adherence.
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Items (or indicators) that constitute "quality of life" instruments can be classified as either reflective (manifestations of some underlying construct), causal (the construct is an effect of the indicators), or composite (the construct is an exact linear combination of the indicators). Psychometric methods based on inter-item associations are only appropriate for reflective indicators, whereas other statistical and non-statistical validation methods can be used for composite or causal indicators. Thus, the distinction has important practical, as well as theoretical, implications. ⋯ Whether an indicator forms a composite, is causal or reflective of quality of life will depend on the definition adopted, and therefore, the reflective-composite-causal distinction is, arguably, best established on conceptual rather empirical grounds, guided by the "mental experiments" suggested by Bollen (Structural equations with latent variables, Wiley, New York, 1989). Conceptual models of health status and quality of life, as well as a cognitive-linguistic approach to quality of life assessment, may make some contribution to this practice. Theoretical consideration of indicator content can guide not only instrument development and validation, but also the selection of an appropriate instrument.
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To conduct a comparative analysis of eight pediatric self-report scales for ages 8-17 years from the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS(®)) in six pediatric chronic health conditions, using indicators of disease severity. ⋯ PROMIS measures discriminate between different clinically meaningful subgroups within several chronic illnesses. Further research is needed to determine the responsiveness of the PROMIS pediatric scales to change over time.
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The reliability and construct validity of the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) were examined in individuals with Huntington disease (HD). ⋯ Findings provide support for both the reliability and validity of the WHODAS 2.0 in individuals with HD.