Journal of Patient-Centered Research and Reviews最新文献

Purpose: This paper was intended to share a flexible engagement model (FEM) for organizing a structure to obtain patient input regarding health care operations and research, provide greater detail on recruitment, retention, and dissemination strategies, and demonstrate successes and potential applications in other health care settings.

Methods: Utilizing a pragmatic approach, the Patient-Engaged Research Center (PERC) at Henry Ford Health System developed the FEM, a 7-step process to introduce interested patients/caregivers to the patient advisor program and to follow up with placements. PERC developed a meeting evaluation to measure participant satisfaction. Retention and dissemination methods to keep participants consistently engaged included monthly email blasts, an annual patient advisor retreat, and inviting patient advisors to attend/present at local and national conferences.

Results: As of January 2020, the program had 419 patient advisors. Almost 50% self-reported as Caucasian and 31% as African American; 73% were women, and most were 45-74 years of age. Recruitment methods proved effective, as 85% of advisors were initially engaged through print and digital marketing. Mean advisor orientation workshop evaluation scores regarding content, facilitators, and logistics were high, with all 4.5 or higher on a Likert scale of 1 (strongly negative) to 5 (strongly positive).

Conclusions: Given the FEM's flexible nature and adaptability, PERC has been successful in effectively leveraging the patient voice and experiences in research and health care delivery. Further research could investigate the model's generalizability, return on investment, and how to formally embed its methodology institutionally.

Purpose: Physical performance measures, like walking speed, identify and predict preclinical mobility disability but are rarely used in routine medical care. A preventive model of care called Mobility Checkup is being designed to reduce mobility disability in older adults. This study had two purposes: 1) determine feasibility and outcomes of the Mobility Checkup, and 2) identify preferences of older adults regarding this model of care using a discrete choice experiment.

Methods: Adults over 55 years of age were recruited from the community. In the study's first phase, participants completed a Mobility Checkup, with feasibility evaluated using 6 criteria. In the second phase, a new sample of older adults (>55 years old) were educated about the Mobility Checkup and then completed a discrete choice experiment to determine their preferences regarding 4 attributes of this care model: cost, visit duration, desired education topic, and style of educational graphic.

Results: Each study phase was completed by 31 participants. Of the 6 feasibility criteria, 5 were met. Visit duration exceeded the 60-minute criteria for 13 of the 31 participants. Still, 91% of participants were very satisfied with the Mobility Checkup. Ability to transition positions identified preclinical mobility disability most frequently. A 30-minute visit with no out-of-pocket cost was deemed preferred.

Conclusions: Older adults value knowing what physical performance measurements predict about their general health. Transitions should be evaluated as part of a Mobility Checkup for older adults. Clearly conveyed cost of health care service is important to older adult consumers.

A recent disease prevalence study of the largest documented Down syndrome (DS) cohort in the United States strongly suggested significant disparity in general infectious disease conditions among individuals with DS versus those without DS. In this follow-up retrospective analysis, we explored these differences in greater detail by calculating prevalence of 52 infectious diseases, across 28 years of data among 6078 individuals with DS and 30,326 age- and sex-matched controls, abstracted from electronic medical records within a large Midwestern health system. We found that the DS cohort had higher prevalence of pneumonias (including aspiration, viral, bacterial, pneumococcal, and unspecified/atypical); otitis externa; and the skin infections impetigo, abscess, and cellulitis. To the contrary, the DS cohort had lower prevalence of many respiratory infections other than pneumonia (including influenza, strep pharyngitis, upper respiratory infection, sinusitis, tonsillitis, laryngitis, bronchitis, scarlet fever, and otitis media); sexually transmitted infections (including bacterial vaginosis, chlamydia, genital herpes, HIV/AIDS, human papillomavirus, pelvic inflammatory disease, and trichomoniasis); mononucleosis; shingles; unspecified hepatitis; intestinal infections; and enteritis. These findings highlight that individuals with DS could be more or less prone to different infectious diseases than their non-DS matched counterparts. Additional research to understand why these differences exist and how they might affect the clinical approach to patients with DS is warranted.

Findings from a recent study of the largest documented cohort of individuals with Down syndrome (DS) in the United States described prevalence of common disease conditions and strongly suggested significant disparity in mental health conditions among these individuals as compared with age- and sex-matched individuals without DS. The retrospective, descriptive study reported herein is a follow-up to document prevalence of 58 mental health conditions across 28 years of data from 6078 individuals with DS and 30,326 age- and sex-matched controls. Patient data were abstracted from electronic medical records within a large integrated health system. In general, individuals with DS had higher prevalence of mood disorders (including depression); anxiety disorders (including obsessive-compulsive disorder); schizophrenia; psychosis (including hallucinations); pseudobulbar affect; personality disorder; dementia (including Alzheimer's disease); mental disorder due to physiologic causes; conduct disorder; tic disorder; and impulse control disorder. Conversely, the DS cohort experienced lower prevalence of bipolar I disorder; generalized anxiety, panic, phobic, and posttraumatic stress disorders; substance use disorders (including alcohol, opioid, cannabis, cocaine, and nicotine disorders); and attention-deficit/hyperactivity disorder. Prevalence of many mental health conditions in the setting of DS vastly differs from comparable individuals without DS. These findings delineate a heretofore unclear jumping-off point for ongoing research.

Purpose: While patient engagement is becoming more customary in developing health products, its monitoring and evaluation to understand processes and enhance impact are challenging. This article describes a patient engagement monitoring and evaluation (PEME) framework, co-created and tailored to the context of community advisory boards (CABs) for rare diseases in Europe. It can be used to stimulate learning and evaluate impacts of engagement activities.

Methods: A participatory approach was used in which data collection and analysis were iterative. The process was based on the principles of interactive learning and action and guided by the PEME framework. Data were collected via document analysis, reflection sessions, a questionnaire, and a workshop.

Results: The tailored framework consists of a theory of change model with metrics explaining how CABs can reach their objectives. Of 61 identified metrics, 17 metrics for monitoring the patient engagement process and short-term outcomes were selected, and a "menu" for evaluating long-term impacts was created. Example metrics include "Industry representatives' understanding of patients' unmet needs;" "Feeling of trust between stakeholders;" and "Feeling of preparedness." "Alignment of research programs with patients' needs" was the highest-ranked metric for long-term impact.

Conclusions: Findings suggest that process and short-term outcome metrics could be standardized across CABs, whereas long-term impact metrics may need to be tailored to the collaboration from a proposed menu. Accordingly, we recommend that others adapt and refine the PEME framework as appropriate. The next steps include implementing and testing the evaluation framework to stimulate learning and share impacts.

Purpose: Genetic information has health implications for patients and their biological relatives. Death of a patient before sharing a genetic diagnosis with at-risk relatives is a missed opportunity to provide important information that could guide interventions to minimize cancer-related morbidity and mortality in relatives.

Methods: We performed semi-structured interviews with individuals diagnosed with Lynch syndrome at 1 of 4 health systems to explore their perspectives on whether health systems should share genetic risk information with relatives following a patient's death. An inductive, open-coding approach was used to analyze audio-recorded content, with software-generated code reports undergoing iterative comparative analysis by a qualitative research team to identify broad themes and representative participant quotes.

Results: Among 23 participating interviewees, 19 supported health systems informing relatives about their Lynch syndrome risk while the remaining 4 were conflicted about patient privacy. Most (n=22) wanted their Lynch syndrome diagnosis shared with relatives if they were unable to share and to be informed of their own risk if a diagnosed relative was unable to share. The most common issues noted regarding information-sharing with relatives included patient privacy and privacy laws (n=8), potential anxiety (n=5), and lack of contact information for relatives (n=3). Interviewee perspectives on how health systems could communicate genetic findings generated a consensus: When - a few months after but within a year of the patient's death; How - explanatory letter and follow-up phone call; and Who - a knowledgeable professional.

Conclusions: Interviews demonstrated strong and consistent perspectives from individuals diagnosed with Lynch syndrome that health systems have a role and responsibility to inform relatives of genetic findings following a patient's death.

Purpose: The objective of this study was to explore parent and child anxiety during the pandemic. Unlike previous pandemics, measures implemented to prevent the transmission of the SARS-CoV-2 virus have been much more limiting.

Methods: An explanatory convergent mixed-methods design was used to describe anxiety of children 9-17 years of age and their parents during August-October 2020. Adult and child versions of State-Trait Anxiety Inventory (STAI) were used to examine levels as measured on STAI's state-anxiety subscale. Web-based interviews with a subset of patients were conducted qualitatively to analyze anxiety-related themes.

Results: A total of 188 parents and 140 children responded to the questionnaires. Mean overall anxiety scores for parents (49.17 [standard deviation: 12.247]) and children (35.43 [standard deviation: 7.894]) were higher than published norms. Parent and child anxiety were positively correlated (r=0.36; P=0.01). From interviews with 11 parents and 11 children; 4 major themes and 10 subthemes describing physical and emotional outcomes resulting from limited social contact, work and family role strain, and uncertainty about COVID-19 were identified.

Conclusions: Parents and children reported elevated anxiety levels during the COVID-19 pandemic. Findings of this study can guide the development of strategies that mitigate the negative impact of isolation, role strain, and uncertainty related to future public health crises.

The COVID-19 pandemic disrupted health care delivery of cancer screenings. The primary aim of our work was to evaluate the degree to which populations were accepting of home-based screenings for colorectal cancer (CRC) and cervical cancer (ie, primary human papillomavirus [HPV] testing). Three groups of adults having distinct health burdens that may affect acceptance of home-based cancer screening were identified through outpatient electronic medical records: those having survived a COVID-19 hospitalization; those having been positive for a non-COVID-19 respiratory illness; or those having type 2 diabetes. A total of 132 respondents (58% female) completed an online survey with hypothetical cases about their acceptance of home-based CRC or cervical cancer screening. Among women respondents, urine and vaginal screening for primary HPV testing was acceptable to 64% and 59%, respectively. Among both men and women, at-home CRC screening with fecal immunochemical test or Cologuard^® was acceptable to 60% of the respondents. When adjusting for education, women with a positive attitude toward home-based urine and vaginal screening were 49 times and 23 times more likely, respectively, to have a positive attitude toward CRC screening. These findings indicate that home-based cancer screens for CRC and primary HPV testing are acceptable to men and women and may allow for greater compliance with screening in the future.