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Measurement Models for Patient-Reported Outcomes and Other Health-Related Outcomes
Published in Douglas D. Gunzler, Adam T. Perzynski, Adam C. Carle, Structural Equation Modeling for Health and Medicine, 2021
Douglas D. Gunzler, Adam T. Perzynski, Adam C. Carle
Health and medical research and clinical practice frequently rely on self-report data or patient-reported outcomes (PROs), where patients report on their own health and health-related outcomes. PROs have become integral to clinical trials and observational studies alike, and the National Institutes of Health (NIH) has invested heavily in developing reliable and valid PROs through the Patient-Reported Outcome Measurement Information System (PROMIS®) [1]. PROMIS® is a set of person-centered measures that evaluates and monitors physical, mental and social health in adults and children [1]. It was designed to be applicable to both the general population and individuals living with chronic conditions.
Adherence and Asthma
Published in Lynn B. Myers, Kenny Midence, Adherence to Treatment in Medical Conditions, 2020
Prescription monitoring. Patient self-report has been shown to be unreliable when patients’ own estimates of their treatment use are compared to those obtained by more objective means (Hyland et al., 1993). When prescription monitoring is performed, approximately one in four patients have been found to overestimate preventer use and underestimate reliever use (Hand and Bradley, 1996). Whilst this is probably the most common method of assessment in both primary and secondary care, it can be unreliable since some patients “test-fire” their inhalers and many have spare inhalers, some of which are only partly used. On the other hand, some pharmaceutical companies overfill inhalers so that they contain more doses than stated. When pharmacy claims are compared with the data in medical records (Kelloway et al., 1994), patients appear to be significantly more adherent to taking tablets than preventive inhalers. Unfortunately, current oral preparations for preventing asthma have more side-effects than inhaled medication, although new tablet treatments are being developed.
Monitoring of physical activity
Published in Claudio F. Donner, Nicolino Ambrosino, Roger S. Goldstein, Pulmonary Rehabilitation, 2020
Heleen Demeyer, Thierry Troosters, Henrik Watz
Several questionnaires have been validated for patients with COPD (14–18) in comparison with activity monitoring. In general, the accuracy of questionnaires to estimate PA of a single patient is poor, but because they are able to identify ‘extremes’ in PA they can be used in large epidemiological studies. The accuracy of using self-report is influenced by (at the group level) an overestimation of the PA by patients (19), recall bias (the longer the recall period the higher the bias) and social desirability (tendency to provide socially desirable information). Responsiveness (or sensitivity) is another important measurement property. Whereas limited information exists about the responsiveness of questionnaires in respiratory disease, it was judged to be poor in the elderly (20). One study showed that longitudinal objectively measured changes were not captured by self-report in the same patients (18). Of note, questionnaires that measure symptoms and health status that also include a domain related to PA cannot be used for an individual measure of PA (21).
Updated strategies for the management of poor medication adherence in patients with bipolar disorder
Published in Expert Review of Neurotherapeutics, 2023
Molly McVoy, Jennifer B. Levin
There is no single agreed upon method for measuring adherence. Medication adherence measurement is generally categorized into objective, subjective, or some combination of the two methods. Common subjective methods include patient self-report, report by a provider or caregiver, and chart review. There are number of benefits of self-report methods including cost, ease of administration, and good correlation, with objective measures including serum levels [25,26]. However, despite the advantages, patients tend to over-report their adherence to self-report measures [27,28]. Furthermore, some of the subjective adherence measures integrate questions about medication attitudes with categorical items (nominal-level data) about adherence (e.g. do you sometimes miss doses of your medication?) rather than providing a quantity (e.g. interval or ratio-level data) of missed medication doses (e.g. how many days in the past week did you miss a dose of X medication?). Perhaps unexpectedly, clinician prediction is often even less reliable than patient self-report with accuracies of only 50–60% [17,29].
Adherence to Iron Chelation Therapy among Adults with Thalassemia: A Systematic Review
Published in Hemoglobin, 2022
Margaret Locke, Paavani S. Reddy, Sherif M. Badawy
The 17 studies that measured adherence ‘quantitatively’ based on the percentage of doses taken lend for more room for comparison, due to the similar calculations conducted to assess these percentages, and the lack of variation in categorical definitions. Despite this, there was a wide range of reported adherence, from 42.0–99.97%. Part of the reason for the wide range of adherence between studies may have been due to the disparate methodologies used to assess adherence. Patient self-report was the most commonly utilized method, however, even within self-report, survey questions, and self-rating scales varied, with only one study using the standardized MMAS tool. In comparison to a more objective measurement such as pill count via MEMS, patient self-report may lead to more inaccuracies, with physician/provider rating, likely lending itself to the biases of the physician and secondhand account of adherence history. In addition, some studies chose to focus on populations with comorbidities [21]. This would lead to a Berkson’s selection bias and likely underestimate the value of true adherence in the general population. Thus, while studies had very different reports on adherence, it is hard to understand whether this heterogeneity is due to measurement, definition, or scale. Future research may center on standardizing adherence reporting (e.g., using a common questionnaire such as MMAS for all patient self-reports). Top predictors associated with ICT adherence included medication type, fewer side effects, perception and understanding of the medication, and personal factors.
Pain and internalizing symptoms in youth with gastrointestinal conditions including recurrent abdominal pain, eosinophilic esophagitis, and gastroesophageal reflux disease
Published in Children's Health Care, 2021
Mary K. Lynch, Kathryn A. Thompson, Reed A. Dimmitt, Margaux J. Barnes, Burel R. Goodin
In an effort to maintain clinic flow and decrease the burden on families, caregiver report, not patient self-report, was gathered. While validated caregiver proxy measures were employed and high agreement has been found between patient and caregiver report, they are, at best, caregiver estimates of the child’s experience. Future studies should explore these variables through patient self-report to provide further understanding of their experience. Finally, a large age range was included in this study to provide greater sample size and generalizability. However, it should be noted that developmental differences are expected across youth age 5–17 years. While age was not significantly correlated with outcome variables in our study, future research could obtain both child and parent report for school age children and adolescents separately to provide a more in depth understanding.