Development of a Conceptual Framework and Calibrated Item Banks to Measure Patient-Reported Dyspnea Severity and Related Functional Limitations

AbstractObjectivesChronic obstructive pulmonary disease is a major global health problem. Although several patient-reported outcome (PRO) measures of chronic obstructive pulmonary disease exist, none were developed using patient-driven concept development. We developed an item bank for dyspnea severity and related functional limitations on the basis of a PRO conceptual framework derived from patient input.MethodsWe identified a large pool of existing items based on a conceptual framework and literature review. Using patient and expert review panels and an item refinement/modification process, we developed an item bank aligned with the conceptual framework, which subsequently underwent psychometric testing via an online Internet panel of dyspnea patients (N = 608).ResultsExploratory factor analysis suggested a dominant first factor accounting for about 78% of the total variance. Confirmatory factor analysis supported a unidimensional model. Item response theory analysis demonstrated good model fit, and differential item functioning analyses indicated that the 33-item scale showed potential for measurement equivalence across sex. A 10-item short form produced comparable scores (r = 0.98) and a computerized adaptive-testing simulation indicated efficient measurement with fewer items (mean 4.65 items).ConclusionsAn efficient patient-reported measure of dyspnea severity and related functional limitations, based on a patient-driven PRO conceptual framework, is now available for further validation and use

Recruiting and Retaining People with Disabilities for Qualitative Health Research: Challenges and Solutions

There are 56.7 million people with disabilities (PWD) living in the United States; yet, PWD are significantly underrepresented in health research. Even when researchers purposively seek to include PWD in studies, challenges emerge related to recruitment and retention, leading to inadequate representation and surface understandings of this population. This in turn contributes to the perpetuation of implicit and explicit health disparities that are already experienced by this population. Grounded within a qualitative, community-based participatory health research framework, we highlight challenges associated with recruiting and retaining PWD in health research, including a critical analysis of the research enterprise structure, how this disables accessible research practices for PWD, and leads to continued skepticism among PWD regarding the value of participating in research. Finally, we propose solutions to create and maintain a culture of access and inclusion as well as long-term collaborative and equity-focused partnerships

Optimizing the measurement of health‐related quality of life in adolescents and young adults with cancer

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/163469/2/cncr33155.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/163469/1/cncr33155_am.pd

Identifying Motor, Emotional-Behavioral, and Cognitive Deficits that Comprise the Triad of HD Symptoms from Patient, Caregiver, and Provider Perspectives

Background: The objective of this study was to identify important attributes associated with the triad of symptoms (cognition, emotional–behavioral, and motor) of Huntington's disease (HD) from patient, caregiver, and medical provider perspectives to facilitate development of a new disease‐specific, health‐related quality of life (HRQOL) instrument. Methods: We conducted a targeted literature review of HD and HRQOL instruments, expert surveys, and patient and caregiver phone‐based interviews to extract information on the symptoms and issues most relevant to the HD symptom triad (HD triad). The data collected from these sources were used to generate themes and subdomains and to develop an integrated schema that highlights the key dimensions of the triad. Results: The search identified the following areas: emotional functioning/behavioral changes (e.g., positive emotions, sadness/depression); cognitive functioning (e.g., memory/learning, attention/comprehension); physical functioning (e.g., motor functioning, medication); social functioning (e.g., leisure, interpersonal relationships); end‐of‐life concerns/planning; and gene testing. Fifteen individuals diagnosed with HD and 16 HD caregivers, recruited from several Huntington's Disease Society of America support group networks, completed phone interviews. Nineteen US medical providers who specialize in HD completed the online survey. Twenty‐six subdomains of the HD symptom triad (seven cognition, 12 emotional–behavioral, and seven motor) emerged relatively consistently across patient, caregiver, and provider samples. These included movements/chorea, memory impairment, depression, and anxiety. Discussion: Based on an integrated, mixed‐methods approach, important HD triad symptom were identified and organized into a guiding schema. These patient‐, caregiver‐, and provider‐triangulated data served as the basis for development of a HD‐specific HRQOL instrument, the HD‐PRO‐TRIAD™

Effects of mindful physical activity on perceived exercise exertion and other physiological and psychological responses: results from a within-subjects, counter-balanced study

BackgroundMost adults are insufficiently active. Mindfulness training may increase moderate to vigorous physical activity (MVPA) adoption and adherence. However, physiological and psychological factors underlying these effects are not well understood. This study examined the effects of an acute bout of MVPA, mindfulness training, and combined MVPA and mindfulness training on physiological and psychological outcomes.MethodsHealthy adults (N = 29, Mage = 28.6) completed 20-min counterbalanced conditions: (a) mindfulness training (MIND); (b) moderate intensity walking (PA), and (c) moderate intensity walking while listening to MVPA-specific guided mindfulness training (PAMIND). Heart rate (HR), Rating of Perceived Exertion (RPE), Feeling Scale (FS) and Blood Pressure (BP) were measured at rest, at regular intervals during each condition, and post-condition. Mindfulness, state anxiety, and self-efficacy were assessed pre- and post-condition.ResultsAverage and peak HR, systolic BP (SBP), and RPE were significantly higher, and average and peak FS were significantly lower during the PA and PAMIND conditions compared to MIND (p < 0.001). Average RPE was significantly higher for PA compared to PAMIND (p < 0.001). Heart rate, feeling scale, body and mental events mindfulness, and self-efficacy for walking increased from pre to post (all p’s < 0.001) for all conditions. Time by condition interactions were significant for change in heart rate, mental events mindfulness, and state anxiety from pre- to post-condition.ConclusionThe physiological response to MVPA and PAMIND were similar. However, RPE was rated lower in the PAMIND condition, which could have implications for MVPA adoption and maintenance. Future work should further explore RPE combining MVPA and mindfulness training

A View from the Past Into our Collective Future: The Oncofertility Consortium Vision Statement

Today, male and female adult and pediatric cancer patients, individuals transitioning between gender identities, and other individuals facing health extending but fertility limiting treatments can look forward to a fertile future. This is, in part, due to the work of members associated with the Oncofertility Consortium. The Oncofertility Consortium is an international, interdisciplinary initiative originally designed to explore the urgent unmet need associated with the reproductive future of cancer survivors. As the strategies for fertility management were invented, developed or applied, the individuals for who the program offered hope, similarly expanded. As a community of practice, Consortium participants share information in an open and rapid manner to addresses the complex health care and quality-of-life issues of cancer, transgender and other patients. To ensure that the organization remains contemporary to the needs of the community, the field designed a fully inclusive mechanism for strategic planning and here present the findings of this process. This interprofessional network of medical specialists, scientists, and scholars in the law, medical ethics, religious studies and other disciplines associated with human interventions, explore the relationships between health, disease, survivorship, treatment, gender and reproductive longevity. The goals are to continually integrate the best science in the service of the needs of patients and build a community of care that is ready for the challenges of the field in the future

Institutional alliances to reduce cancer disparities in Chicago

A partnership formed between Northeastern Illinois University (NEIU) and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University sought to address well- documented cancer health disparities in Chicago by developing a collaborative research, training, and educational infrastructure between a minority- serving institution and a National Cancer Institute designated comprehensive cancer center. With a critical examination of partnership documentation and outputs, we describe the partnership’s community- engaged approaches, challenges, and lessons learned. Northeastern Illinois University and the Lurie Cancer Center engaged in a yearlong partnership- building phase, identified interdisciplinary research teams, formed a governance structure, and identified collective aims. Partnership outcomes included funded inter- institutional research projects, new curriculum, and an annual research trainee program. Significant challenges faced included uncertain fiscal climate, widespread turnover, and dissimilar institutional demands. Lessons learned from this minority serving institution and comprehensive cancer center partnership may be useful for bridging distinct academic communities in the pursuit of ameliorating health disparities

Reply to the Importance of a collaborative health‐related quality of life measurement strategy for adolescents and young adults with cancer

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/167517/1/cncr33418.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/167517/2/cncr33418_am.pd

HD-PRO-TRIAD™ Validation: a Patient-Reported Instrument for the Symptom Triad of Huntington Disease

Background:&nbsp;Few valid, disease‐specific measures of health‐related quality of life (HRQOL) capture the spectrum of symptoms associated with Huntington's disease (HD). The HD‐PRO‐TRIAD&trade; is a new, HD‐specific, patient‐reported outcome (PRO) instrument of the HD symptom triad (cognitive decline, emotional/behavioral dyscontrol, and motor dysfunction) designed for clinical research and practice. The objective was to validate the HD‐PRO‐TRIAD&trade; through a cross‐sectional sample of individuals with HD and caregivers.Methods:&nbsp;Development of the HD‐PRO‐TRIAD&trade; has been described elsewhere. A total of 132 individuals with HD and 40 HD caregivers, comprising 29 dyads, participated in the cross‐sectional psychometric validation of this instrument. Participants provided responses to the HD‐PRO‐TRIAD&trade; and other HRQOL and disease severity instruments (EuroQOL 5D, Short Form 12, Neuro‐QOL Item Banks, PROMIS Global Health, and self‐reported Unified Huntington's Disease Rating Scale Total Functional Capacity and Independence Scales). Internal consistency, construct validity, and patient&ndash;caregiver proxy consistency were evaluated. Results:&nbsp;Internal consistency of the three domains and overall HD‐PRO‐TRIAD&trade; instrument was supported by Cronbach's alpha values &ge;0.94. Construct validity was supported by significant correlations between HD‐PRO‐TRIAD&trade; domain scores and other measures of the same domains (e.g., significant positive correlations between HD‐PRO‐TRIAD&trade; Anxiety with Neuro‐QOL Anxiety), as well as slightly weaker but still strong correlations with other HRQOL instruments (e.g., HD‐PRO‐TRIAD&trade; Anxiety and UHDRS Independence; all p&lt;0.01). Consistency between patient self‐report and caregiver proxy report was supported by an intra‐class correlation coefficient &ge;0.92 for all three domains and the overall instrument.Discussion:&nbsp;These data indicate that HD‐PRO‐TRIAD&trade; is a reliable and valid HRQOL instrument that captures the typical triad of HD symptoms.</p