Understanding patient and caregiver perspectives using a dyad approach for data collection: A systematic review of the literature

Treatments outside of a clinical setting may be managed independently by the pediatric patient, independently by a caregiver, or by the patient and caregiver together. Best practices for pediatric clinical outcome assessment (COA) recommend patient-reported outcome (PRO) and/or observer-reported outcome (ObsRO) measures to assess the patient experience of a condition or its treatment. However, a dyad approach where patients and caregivers can complete assessments together may be useful for assessing a shared treatment experience that may not be adequately captured by a PRO and/or an ObsRO. A systematic, targeted literature review of empirical literature was conducted to identify and describe published studies detailing dyad patient-caregiver outcome reporting approaches. The search was run in the MEDLINE®, Embase, and PsycINFO® databases using the OvidSP platform and was limited to English-language studies published within 10 years of the conducted search on 28 September 2021, and 13 articles were selected for full-text review based on pre-specified criteria. Advantages and disadvantages for use of a dyad data collection approach are discussed. Though not appropriate for all settings, dyad data collection may be useful for situations where the best practice approach to measurement does not capture all relevant perspectives, or the use of PRO and ObsRO also does not comprehensively capture all relevant concepts. In following, it may offer a pragmatic solution that can minimize the use of proxy assessment and limit missing data, particularly in research involving a shared patient and caregiver treatment experience. Experience Framework This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

A Computerized Asthma Outcomes Measure Is Feasible for Disease Management

OBJECTIVE: To develop and test an online assessment referred to as the ASTHMA-CAT (computerized adaptive testing), a patient-based asthma impact, control, and generic health-related quality of life (HRQOL) measure. STUDY DESIGN: Cross-sectional pilot study of the ASTHMA-CAT\u27s administrative feasibility in a disease management population. METHODS: The ASTHMA-CAT included a dynamic or static Asthma Impact Survey (AIS), Asthma Control Test, and SF-8 Health Survey. A sample of clinician-diagnosed adult asthmatic patients (N = 114) completed the ASTHMA-CAT. Results were used to evaluate administrative feasibility of the instrument and psychometric performance of the dynamic AIS relative to the static AIS. A prototype aggregate (group-level) report was developed and reviewed by care providers. RESULTS: Online administration of the ASTHMA-CAT was feasible for patients in disease management. The dynamic AIS functioned well compared with the static AIS in preliminary studies evaluating response burden, precision, and validity. Providers found reports to be relevant, useful, and applicable for care management. CONCLUSION: The ASTHMA-CAT may facilitate asthma care management

Usefulness of the SF-8 Health Survey for comparing the impact of migraine and other conditions

BACKGROUND: Migraine headaches have been shown to have substantial personal and societal implications. Health-related quality of life (HRQOL) assessments of migraineurs have been used to monitor and evaluate patient- and population-based outcomes, and to evaluate effectiveness and responsiveness to treatment. In this paper, we test a new, even shorter generic health survey, the SF-8 Health Survey (SF-8), an alternate form that uses one question to measure each of the eight SF-36 Health Survey (SF-36) domains, in a sub-sample of migraine sufferers. METHODS: Data from 7557 participants surveyed via the Internet and mail were used to document the burden of migraine on HRQOL and to compare the relative burden of migraine with other chronic conditions using the SF-8. RESULTS: Migraineurs\u27 HRQOL is similar to those with congestive heart failure, hypertension and diabetes, and is better than those with depression. Migraine sufferers experience better physical health and worse mental health (MH) than those with osteoarthritis. Results support prior research indicating that the burden of migraine on functional health and well-being is considerable and comparable to other chronic conditions known to have substantial impact on HRQOL. CONCLUSIONS: The SF-8 may provide a more practical and efficient method to describe the burden of migraine in population studies

Using Qualitative Research to Inform the Development of a Comprehensive Outcomes Assessment for Asthma

Background: Qualitative research can inform the development of asthma patient-reported outcome (PRO) measures and user-friendly technologies through defining measurement constructs, identifying potential limitations in measurement and sources of response error, and evaluating usability. Abstract: Objective: To inform the development of a comprehensive asthma PRO assessment with input from patients and clinical experts. Abstract: Methods: Self-reported adult asthma patients recruited from a 3000-member New England area research panel participated in either one of three focus groups (n - 21) or individual cognitive item debriefing interviews (n - 20) to discuss how asthma impacts their health-related quality of life (HR-QOL), and provide feedback on a preliminary set of asthma impact survey items and prototype patient reports. Focus groups and cognitive interviews were conducted using traditional research principles (e.g. semi-structured interview guide, probing, and think aloud techniques). An expert advisory panel (n - 12) including asthma clinical specialists and measurement professionals was convened to review results from the focus group and cognitive interview studies, and make recommendations for final survey and report development. Abstract: Results: Domains of health impacted by asthma included physical (recreation, play, competitive sports, and exercise), social (activities, family relationships), emotional (anger, upset, frustration, anxiety, worry), sleep, role (recreational/leisure activities, work), and sexual functioning. Most items in the impact survey were easily understood, covered important content, and included relevant response options. Items with contradictory examples and multiple concepts were difficult to comprehend. Suggestions were made to expand survey content by including additional items on physical and sexual functioning, sleep, self-consciousness, stigma, and finances. Reports were considered useful and participants saw value in sharing the results with their doctors. Graphic presentation of scores was not always understood; participants preferred tabular presentation of score levels with associated interpretative text. Display of inverse scores for different measures (higher scores equaling better health on one scale and worse health on another) shown on a single page was confusing. The score history section of the report was seen as helpful for monitoring progress over time, particularly for those recently diagnosed with asthma. Expert panelists agreed that displaying inverse scores in a single summary report could be confusing to patients and providers. They also stressed the importance of comprehensive interpretation guidelines for patients, with an emphasis on what they should do next based on scores. Panelists made recommendations for provider and aggregate-level reports (e.g. 'red flags' to indicate significant score changes or cut points of significance; identification of subgroups that have scored poorly or recently got worse). Abstract: Conclusion: Incorporating input from patients, clinicians, and measurement experts in the early stages of product development should improve the construct validity of this PRO measure and enhance its practical application in healthcare.

Psychometric Evaluation of a New Patient-Reported Outcome (PRO) Symptom Diary for Varicose Veins: VVSymQ(®) Instrument.

OBJECTIVE To evaluate the psychometric properties of the VVSymQ(®) instrument, a new 5-item patient-reported outcome (PRO) measure for symptoms of varicose veins. METHOD The VVSymQ(®) electronic daily diary was administered to outpatients who received routine treatment for varicose veins (N = 40). Compliance with diary administration and item score variability, reliability, construct validity, sensitivity to change, and clinically meaningful change were evaluated. RESULTS Patients completed >97 % of scheduled diary assessments (at screening, baseline, and week 8). The VVSymQ(®) instrument captured patients' pre-treatment symptoms (all VVSymQ(®) symptoms were endorsed by ≥75 % of patients at baseline), and the change post-treatment (mean change in score -6.1), with a large Cohen effect size (1.6). Test-retest reliability was high (intraclass correlation coefficient 0.96); internal consistency was good (Cronbach's alpha ≥0.76; baseline, week 8). VVSymQ(®) scores were more strongly associated with PRO scores that reflect symptoms and symptom impact (the Venous Insufficiency Epidemiological and Economic Study-Quality of Life/Symptoms [VEINES-QOL/Sym] instrument and the Chronic Venous Insufficiency Quality-of-Life Questionnaire [CIVIQ-20]) than with PRO scores that reflect appearance (the Patient Self-Assessment of Appearance of Visible Varicose Veins [PA-V(3)]) or clinician-reported outcome scores (the Clinical-Etiology-Anatomy-Pathophysiology [CEAP] Classification of Venous Disorders and Venous Clinical Severity Score [VCSS]), demonstrating construct validity. Patients reporting that symptoms were "moderately" or "much improved" on the Patient Global Impression of Change (PGIC) anchor (i.e., >97 % of patients) had mean improvements of -6.3 VVSymQ(®) points, while a cumulative distribution curve showed that 50 % of patients improved by ≥-5.8 points; thus, a score change of approximately -6 demonstrated a clinically meaningful change in this study. The clinically meaningful change in the VVSymQ(®) score was greater in patients with a greater baseline VVSymQ(®) symptom burden, and the VVSymQ(®) instrument captured clinically meaningful treatment benefit even in patients with a low baseline symptom burden. CONCLUSION The 5-item VVSymQ(®) instrument is a brief, psychometrically sound, useful tool for evaluating patient-reported varicose veins symptoms