Centering the person in development of a model of care for people with Parkinson's disease: a qualitative study.

PURPOSE: Obtain the perspectives of people with Parkinson's disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson's Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs. METHODS: This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed via thematic analysis. RESULTS: Twenty-five individuals (PwPD, n = 18; CPs, n = 7) participated across four focus groups. Researchers developed four themes to describe participants' lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as: 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community. CONCLUSIONS: Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.

Health professionals need to inquire about an individual's lived experience and employ strategies that center the person and personalizes their care while also integrating a coordinated interdisciplinary approach.An ideal model of care needs to integrate healthcare professionals as part of a larger care team that includes the person with Parkinson's disease, and facilitates communication and planning with those team membersAn ideal model of care needs to integrate the larger community and seek to refer and build relationships with health professionals, organizations, and non-medical providers that will facilitate holistic care and advocate for people with Parkinson's disease.

Who's in control? Situating expertise, (mis)trust, and power among the Latine/Hispanic community in COVID-19's liminal moments.

BACKGROUND: Research has established the disproportionate impact of COVID-19 on Black, Indigenous, and People of color (BIPOC) communities, and the barriers to vaccine trust and access among these populations. Focusing on perceptions of safety, access, and trustworthiness, studies often attach barriers to community-members, and discuss vaccines as if developed from an objective perspective, or "view from nowhere" (Haraway). OBJECTIVE: We sought to follow Haraway's concept of "situated knowledges," whereby no one truth exists, and information is understood within its context, to understand the exertions of expertise surrounding vaccines. We focused on perceptions of power among a BIPOC community during a relatively unexamined moment, wherein the status of the pandemic and steps to prevent it were particularly uncertain. METHODS: We report the findings of ten focus groups conducted among members of Rhode Island's Latine/Hispanic communities between December 2021 and May 2022. We called this time COVID-19's liminal moment because vaccines were distributed, mandates were lifted, vaccine efficacy was doubted, and new strains spread. We translated, transcribed, and analyzed focus groups using thematic analysis. RESULTS: Community-member (n = 65) perceptions of control aligned with three key themes: (1) no power is capable of controlling COVID-19, (2) we are the objects of scientific and political powers, and (3) we, as individuals and communities, can control COVID-19 through our decisions and actions. CONCLUSIONS: By centering the perspectives of a minoritized community, we situated the scientific knowledge produced about COVID-19 within the realities of imperfect interventions, uncontrollable situations, and medical power-exertions. We argue that medical knowledge should not be assumed implicitly trustworthy, or even capable, but instead seen as one of many products of human labor within human systems. Trust and trustworthiness must be mutually negotiated between experts, contexts, and communities through communication, empowerment, and justice.

Proposing a new history of grief's medicalisation: A critical discourse analysis.

Conceptualisations of grief have transformed significantly in recent decades, from an experience accepted and expressed in community spaces to a diagnosable clinical phenomenon. Narratives of this transformation tend to focus on grief's relationship to major depression, or on recent nosological changes. This paper examines the possibility of a new narrative for medicalisation by grounding in the networks of language and power created around 'grief' through a critical discourse analysis of psy-discipline articles (n = 70) published between 1975 and 1995. Focusing on shifts in definitions of, methods used to approach, and rationales motivating study of the experience, it posits that the psy-disciplines exerted exclusive expertise over grief decades before its creation as a diagnosis. By reconceptualising grief in the terms of psy-specific symptoms and functional performance and by approaching it with the decontextualising and interventionist methods of an increasingly scientific psy-discipline, the psy-community medicalised grief between 1975 and 1995. Identifying neoliberal and other cultural influences shaping this process of medical construction and reconsidering narratives of grief's history mindful of the powers exerted in medicalisation, this paper establishes that these moments played a critical role in the development of the present's grief.

Anxiety, attitudes, and education about fertility among medical students in the United States.

BACKGROUND: As delayed family building is common among physicians, the goal of this study was to evaluate childbearing plans, anxiety related to future fertility, and interest in fertility education among medical students. METHODS: Using convenience and snowball sampling methods, an electronic REDCap survey was distributed via social media and group messaging applications to medical students enrolled in medical schools across the United States. Answers were collected, and analysis of the descriptive statistics was performed. RESULTS: The survey was completed by 175 participants, 72% of which were female (assigned at birth). The mean (± SD) age of participants was 24.9 ± 1.9 years. Of all participants, 78.3% desire to have children and 65.1% of these individuals plan to delay childbearing. On average, the planned age of first pregnancy is 31.0 ± 2.3 years. "Lack of time" was the greatest influence on decision regarding timing of childbearing. Of all respondents, 58.9% reported at least some anxiety related to future fertility. When females and males were compared, significantly more females (73.8%) versus males (20.4%) reported worrying about future fertility (p < 0.001). Participants reported that greater knowledge about infertility and potential treatments would help ease fertility related anxiety, and 66.9% of respondents showed interest in learning about how things such as age and lifestyle can impact fertility, preferably through medical curricula, videos, and podcasts. CONCLUSION: A majority of the medical students in this cohort intend to have children and most plan to delay childbearing. A large percentage of female medical students reported anxiety related to future fertility, but many students showed interest in receiving fertility education. This study highlights an opportunity for medical school educators to incorporate targeted fertility education into their curriculum with the intention of decreasing anxiety and improving future reproductive success.

The PROMIS CAT Demonstrates Responsiveness in Patients After ACL Reconstruction Across Numerous Health Domains.

BACKGROUND: The Patient-Reported Outcomes Measurement Information System (PROMIS) has emerged as a dynamic, efficient, and validated patient-reported outcome measure in the field of orthopaedics. However, the responsiveness, which is defined as the ability to detect changes in scores over time, of PROMIS computer adaptive tests (CATs) after anterior cruciate ligament reconstruction (ACLR) has not been well documented. PURPOSE: To investigate the responsiveness up to 1 year postoperatively of multiple PROMIS CAT domains in patients undergoing ACLR. STUDY DESIGN: Cohort study (diagnosis); Level of evidence, 3. METHODS: All patients who underwent ACLR by 1 of 2 fellowship-trained sports medicine orthopaedic surgeons, with preoperative and at least 6 months postoperative visits, were included in this study. PROMIS CAT physical function (PF), pain interference (PI), and depression (D) scores from each visit were collected and analyzed. Preoperative patient-centric factors, including demographic factors and meniscal pathology, were analyzed for associations with improvements in PROMIS scores. RESULTS: A total of 100 patients (62 male patients and 38 female patients; mean age, 27.6 ± 11.8 years) with an average follow-up of 338.5 ± 137.5 days were included in this study. Preoperative PF, PI, and D scores improved significantly from 38.5 ± 7.3, 60.3 ± 7.0, and 47.9 ± 9.1, respectively, to 53.6 ± 10.3, 48.1 ± 8.5, and 41.0 ± 9.9, respectively (P < .001 for each domain). Lower preoperative PF scores, PI scores, and a lower body mass index (BMI) were predictive for greater improvements in PF. Higher preoperative PI scores and a lower BMI were predictors for greater improvements in PI. Meniscal pathology was not predictive of improvement in PROMIS scores. CONCLUSION: PROMIS CAT assessments of PF, PI, and D demonstrated responsiveness in patients undergoing ACLR up to 1 year. Worse preoperative PROMIS scores and a lower BMI were predictive of greater improvements in PROMIS scores.

The relationship between shoulder range of motion and elbow stress in college pitchers.

HYPOTHESIS: College pitchers with increased external rotation gain (ERG) produce increased medial elbow torque (elbow stress) whereas those with reduced total rotational range of motion (ROM) have reduced medial elbow torque during pitching. METHODS: Pitchers were recruited from 3 college baseball teams. Players with prior injury or on pitching restrictions because of pain were excluded. Players were evaluated within 2 weeks before their first game of the season. Pitchers completed an intake survey, and shoulder and arm measurements were taken. Pitchers were fitted with a baseball sleeve that included a sensor at the medial elbow. The sensor calculated elbow torque, arm speed, arm slot, and shoulder rotation for each pitch, while a radar gun measured peak ball velocity. After adequate warm-up, pitchers threw 5 fastballs in a standardized manner off the mound at game-speed effort. The primary outcome evaluated the relationship between shoulder ROM and medial elbow torque. Additional outcomes evaluated pitcher characteristics and demographic characteristics in the context of shoulder ROM. RESULTS: Twenty-eight pitchers were included in the preseason analysis. The average age and playing experience were 20.1 years (standard deviation [SD], 1.3 years) and 15.3 years (SD, 1.8 years), respectively, with 2.5 years (SD, 1.2 years) playing at collegiate level. The dominant shoulder showed decreased internal rotation and increased external rotation (ER) relative to the nondominant side (P < .001). The average glenohumeral internal rotation deficit and ERG were 11.3° (SD, 9.87°) and 5.71° (SD, 8.8°), respectively. ERG ≥ 5° was a significant predictor of elbow stress during pitching (47.4 Nm [SD, 0.7 Nm] vs. 45.1 Nm [SD, 0.6 Nm], P = .014). Univariate associations showed that each additional degree of ER resulted in increased elbow torque (ß estimate, 0.35 ± 0.06 Nm; P = .003). Conversely, decreased medial elbow torque was found in pitchers with reduced shoulder ROM (glenohumeral internal rotation deficit ≥ 20°: 43.5 Nm [SD, 1.1 Nm] vs. 46.6 Nm [SD, 0.5 Nm], P = .011; loss of total rotational ROM ≥ 5°: 43.6 Nm [SD, 1.1 Nm] vs. 46.6 Nm [SD, 0.5 Nm], P = .013) and in those with greater arm length (P < .05). CONCLUSIONS: College pitchers with increased ER produce greater medial elbow torque during the pitching movement. Each degree of increased ER was found to correlate with increased elbow torque and ball velocity. On the contrary, arm length and reduced shoulder ROM were associated with reduced medial elbow torque. This study suggests that increased ER in pitchers is associated with greater elbow stress during pitching.

The Effect of the Crow Hop on Elbow Stress During an Interval Throwing Program.

BACKGROUND: Postoperative rehabilitation protocols after ulnar collateral ligament (UCL) reconstruction typically involve a structured interval throwing program. In an effort to minimize torque placed on the UCL, athletes are often instructed to throw with a crow hop, even at short throwing distances. However, the effect of the crow hop on medial elbow stress is unknown. PURPOSE/HYPOTHESIS: The purpose was to determine whether elbow stress differs with and without a crow hop across the throwing distances of a typical interval throwing program. We hypothesized that crow hop throws would generate lower torque on the elbow than standing throws at each distance of the interval throwing program. STUDY DESIGN: Controlled laboratory study. METHODS: Healthy high school and collegiate pitchers and position players were recruited from the surrounding area. Each player was outfitted with a wearable athletic sleeve and device that recorded elbow torque (Newton-meters), arm slot (degrees), arm speed (revolutions per minute), and shoulder rotation (degrees). Ball velocity (miles per hour) was measured using a radar gun. Players were instructed to perform 3 crow hop throws and 3 standing throws at distances of 30, 45, 60, 90, 120, 150, and 180 feet. A repeated measures analysis of variance was used to compare ball velocity, elbow torque, arm slot, arm speed, and shoulder rotation between crow hop and standing throws at each throwing distance. RESULTS: Twenty athletes participated in this study (average age, 17.8 years; range, 15-25 years). The average medial elbow torque increased at each distance for both crow hop and standing throws at distances of 30, 45, 60, and 90 feet (P < .05), after which there were no significant increases in elbow torque (P > .05). The average torque was higher for crow hop throws than standing throws at distances of 30 feet (13.9 N·m vs 12.0 N·m; P = .002), 45 feet (21.8 N·m vs 19.3 N·m; P = .005), and 60 feet (28.0 N·m vs 24.5 N·m; P = .02). CONCLUSION: Crow hop throws generated greater medial elbow torque than standing throws at distances up to 60 feet; however, there were no differences in elbow torque at distances greater than 60 feet between the 2 throw types. For both crow hop and standing throws, elbow stress increased at each distance interval up to 90 feet before plateauing at distances greater than 90 feet. The crow hop throwing technique does not reduce medial elbow stress during a simulated interval throwing program, and it may actually increase torque at shorter throwing distances. CLINICAL RELEVANCE: The results of our study indicate that it would be prudent for players to initially perform standing throws at shorter distances and only later be allowed to employ a natural crow hop at greater distances to minimize torque placed on the medial elbow during UCL rehabilitation protocols.

Pediatric PROMIS Computer Adaptive Tests Are Highly Correlated With Adult PROMIS Computer Adaptive Tests in Pediatric Sports Medicine Patients.

BACKGROUND: The Patient-Reported Outcomes Measurement Information System (PROMIS) is a powerful set of patient-reported outcome measures (PROMs) that are gaining popularity throughout orthopaedic surgery. The use of both adult and pediatric PROMIS questionnaires in orthopaedic sports medicine limits the value of the PROMIS in routine sports medicine clinical care, research, and quality improvement. Because orthopaedic sports medicine surgeons see patients across a wide age range, simplifying the collection of PROMIS computer adaptive tests (CATs) to a single set of questionnaires, regardless of age, is of notable value. PURPOSE/HYPOTHESIS: The purpose was to determine the strength of the correlation between the pediatric and adult PROMIS questionnaires. We hypothesized that there would be a high correlation between the adult and pediatric versions for each PROMIS domain, thereby justifying the use of only the adult version for most sports medicine providers, regardless of patient age. STUDY DESIGN: Cohort study (Diagnosis); Level of evidence, 2. METHODS: Between December 2018 and December 2019, all pediatric sports medicine patients presenting to a single, academic, orthopaedic sports medicine clinic were asked to participate in the present study with their parents' consent. Patients were asked to complete a set of adult PROMIS domains (Physical Function and/or Upper Extremity, Pain Interference, and Depression) as well as a set of pediatric PROMIS domains (Mobility and/or Upper Extremity, Pain Interference, and Depressive Symptoms). Concurrent validity was assessed using Pearson correlation coefficients (r). Ceiling and floor effects were determined. RESULTS: A total of 188 patients met our inclusion criteria. The correlation between the adult and pediatric PROMIS Upper Extremity, Physical Function and Mobility, Pain Interference, and Depression and Depressive Symptoms forms were high-moderate (r = 0.68; P < .01), high-moderate (r = 0.69; P < .01), high (r = 0.78; P < .01), and high (r = 0.85; P < .01), respectively. Both adult and pediatric depression-related PROMIS domains demonstrated notable floor effects (adult: 38%; pediatric: 24%). The pediatric PROMIS Upper Extremity domain demonstrated a ceiling effect (20%). CONCLUSION: Adult PROMIS CATs may be used in an orthopaedic sports medicine clinic for both adult and pediatric patients. Our findings will help decrease the amount of resources needed for the implementation and use of PROMs for patient care, research, and quality improvement in orthopaedic sports medicine clinics.

What Are the Floor and Ceiling Effects of Patient-Reported Outcomes Measurement Information System Computer Adaptive Test Domains in Orthopaedic Patients? A Systematic Review.

PURPOSE: To perform a systematic review to answer the following: (1) What are the floor and ceiling (F/C) effects of the Patient-Reported Outcomes Measurement Information System (PROMIS) computer adaptive test (CAT) domains of physical function (PF), upper extremity physical function (UE), pain interference (PI), and depression (D) in adult orthopaedic patients? (2) Do the PROMIS-PF and PROMIS-PI domains have differing F/C effects depending on use in upper extremity, lower extremity, spine, neck, and back, or trauma patients?. METHODS: (Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines were followed, the review was registered on PROSPERO, and the methodological index for non-randomized studies was used for this systematic review. Studies reporting the F/C effects of at least 1 of 4 PROMIS CAT domains in orthopaedic patient cohorts accessed through PubMed and Embase on October 30, 2018, were included. F/C effects for each study were reported within forest plots. RESULTS: Forty-three studies were included. Generally, varying cohorts demonstrated no F/C effects for PROMIS-PF (0%-9.0%), variable ceiling effects for PROMIS-UE (lower in v2.0; 0%-28.2%), variable floor effects for PROMIS-PI (0%-19.0%), and significant floor effects for PROMIS-D (0.4%-23.4%). CONCLUSIONS: The orthopaedic literature demonstrated generally favorable floor and ceiling effects for PROMIS CAT domains, with the exception of variable ceiling effects for PROMIS-UE (the newer version exhibits only minor effects), variable floor effects for PROMIS-PI, and significant floor effects for PROMIS-D. In addition, the F/C effects of PROMIS-PF did not vary based on patient population. Although the floor effects of PROMIS-PI did vary based on patient population, the variability does not appear to be based solely on anatomic location. The PROMIS-PF and PROMIS-UE v2.0 demonstrate consistently low floor and ceiling effects. However, the PROMIS-PI and PROMIS-D may need modification before widespread adoption for clinical and research purposes. LEVEL OF EVIDENCE: III; systematic review of Level I-III studies.

Knowledge, Behaviors, and Social Factors That Influence Pregnancy Weight Gain among Youth Ages 16-24 Years.

STUDY OBJECTIVE: A large proportion (50%-75%) of youth (younger than 21 years old) who become pregnant gain more weight during pregnancy than is recommended by the National Academy of Medicine. Excess weight gain during pregnancy is a strong risk factor for long-term obesity among mothers and their infants. There is a significant gap in our understanding of youth's knowledge and behavior related to weight gain during pregnancy. To develop effective interventions for pregnant youth, it is necessary to understand their distinct needs and preferences. Using a youth-centered qualitative approach, the purpose of this study was to explore the knowledge, behaviors, and social factors that influence weight gain during pregnancy for youth. DESIGN: Participants completed weekly text message surveys and semistructured interviews to explore their perspectives of weight gain during pregnancy. Data were analyzed using qualitative thematic analysis on the basis of grounded theory. SETTING AND PARTICIPANTS: Pregnant youth ages 16-24 years old recruited from 2 urban, low-income, primary care clinics in Southeast Michigan. INTERVENTIONS, MAIN OUTCOME MEASURES, AND RESULTS: Among our sample (N = 54) 4 themes emerged. First, many youths were knowledgeable about healthy behaviors in pregnancy. However, the second theme showed that many youths reported barriers to engaging in these healthy behaviors, including stress, poor motivation, and issues of convenience. Third, they showed inadequate knowledge about exercise in pregnancy, and fourth, many endorsed food cravings that significantly influenced diet choices. CONCLUSION: Many pregnant youths have appropriate knowledge about healthy behaviors during pregnancy, but face many youth-specific barriers to achieving these behaviors. Interventions should address logistical challenges (eg, food access, cost, transportation) to healthy behaviors in pregnancy to make healthy diet and exercise more convenient for pregnant youth.