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In July 2015, the Journal of the American Geriatrics Society published a manuscript titled, "Failing to Focus on Healthy Aging: A Frailty of Our Discipline?" In response, the American Geriatrics Society (AGS) Clinical Practice and Models of Care Committee and Public Education Committee developed a white paper calling on the AGS and its members to play a more active role in promoting healthy aging. The executive summary presented here summarizes the recommendations from that white paper. The full version is published online at GeriatricsCareOnline.org. Life expectancy has increased dramatically over the last century. Longer life provides opportunity for personal fulfillment and contributions to community but is often associated with illness, discomfort, disability, and dependency at the end of life. Geriatrics has focused on optimizing function and quality of life as we age and reducing morbidity and frailty, but there is evidence of earlier onset of chronic disease that is likely to affect the health of future generations of older adults. The AGS is committed to promoting the health, independence, and engagement of all older adults as they age. Geriatrics as an interprofessional specialty is well positioned to promote healthy aging. We draw from decades of accumulated knowledge, skills, and experience in areas that are central to geriatric medicine, including expertise in complexity and the biopsychosocial model; attention to function and quality of life; the ability to provide culturally competent, person‐centered care; the ability to assess people's preferences and values; and understanding the importance of systems in optimizing outcomes. J Am Geriatr Soc 67:17–20, 2019. [ABSTRACT FROM AUTHOR]

The article presents abstracts on the American Psychosocial Oncology Society's (APOS) 9th Annual Conference which include cancer survivors' quality of life, national policy changes for cancer survivors and substance use in cancer survivors.

The National Institute on Aging (NIA), the newest of the 11 National Institutes of Health, is dedicated to improving the quality of life of the old in America through biomedical, social, and behavioral research. Aging is viewed as more than just decline and deterioration; it is also a process of continued development and accumulated knowledge. The NIA will encourage innovative research but will not support the delivery of health services, as that is the domain of the other agencies. In areas of overlap, such as diseases common to the old, the NIA will collaborate with other Institutes. A good target area for collaboration is senile dementia. Other areas of interest to the NIA are: encouraging the incorporation of geriatric medicine as a subspecialty, developing retirement test patterns, and investigating drug-drug and drug–age interactions, personality and social processes, and immunocompetence. [ABSTRACT FROM AUTHOR]

Background: Impaired discourse production is commonly reported for individuals with traumatic brain injury (TBI). Discourse deficits can negatively impact community integration, return to employment and quality of life. COVID‐19 restrictions have reduced in‐person assessment services for people with communication impairments. Advances in telehealth may help speech and language therapists (SLTs) to assess monologic discourse more systematically and improve access to services for patients who may find it difficult to attend in‐person. Aims: To examine the feasibility of telehealth administration of narrative and procedural discourse tasks with individuals with TBI and matched controls. Methods & Procedures: A total of 20 individuals with TBI and 20 healthy controls, aged 18–55 years, were directly recruited from the UK and indirectly recruited from the US. For participants with TBI, time post‐injury was at least 3 months with no diagnosis of aphasia. Control participants were matched for sex and as closely as possible for age. Feasibility of measures was based upon the time to administer both narrative tasks, the report of any technological problems, and participant feed. Discourse samples were transcribed verbatim and analysed using story grammar analysis (for narrative discourse) and identification of propositions (for procedural discourse). Interrater reliability was calculated using percentage agreement for 50% of the data. Non‐parametric analyses were used to analyse the performance of the two groups. Outcomes & Results: Narrative and procedural discourse samples were collected via telehealth in approximately 10 min with no reported technical difficulties or complaints from any participants. For narrative discourse performance, there were significant differences for the TBI and control groups for measures of complete episodes (p < 0.001) and missing episodes (p = 0.005). No significant group differences were noted for any of the procedural discourse measures. Conclusions & Implications: Results support the feasibility of collecting discourse samples via telehealth. Although the participants' discourse performance distinguished the TBI and control groups on the narrative task, no differences between the groups were noted for the procedural task. The narrative discourse task may have been more difficult than the procedural task, or video cue support reduced the cognitive load of the procedural task. This finding suggests the use of more complex procedural tasks without video cue support may be needed. WHAT THIS PAPER ADDS: What is already known on this subject: Although little research has explored the feasibility of administering discourse assessments for individuals with TBI via telehealth, some studies have found that discourse interventions can be feasibly administered via telehealth. It is also well established that individuals with TBI struggle with the supra‐structural and macro‐linguistic elements of discourse production. Both procedural and narrative discourse tasks have been found to differentiate individuals with TBI from healthy controls. What this paper adds to existing knowledge: Few studies have investigated the feasibility of, and procedures for, administering discourse tasks via telehealth. Additionally, the inclusion of multiple types of discourse tasks to parse cognitive–communication abilities is lacking in the current literature. Findings from this study support that narrative and procedural discourse can be feasibly sampled via telehealth and that international collaboration for research on this topic can facilitate such studies. Individuals with TBI performed more poorly on three measures of narrative discourse. No differences between groups were identified for the procedural task. What are the potential or actual clinical implications of this work?: Telehealth assessment for discourse provides flexibility for both the individual with TBI and the speech–language therapist and does not compromise the quality of data collected. The administration of discourse tasks and collection of data was not time‐consuming and was well accepted by the study participants. Additionally, international research collaboration not only expands potential participation in research but increases the opportunity to recruit and study more diverse groups. [ABSTRACT FROM AUTHOR]

Purpose: Most people living with HIV (PLH) in the United States are over age 50 and this sector of PLH continues to grow. Aging with HIV can be challenging due to comorbid medical conditions, mental health disorders, substance use, and lack of social and practical support. Additional challenges are faced by older PLH living in the rural United States, such as longer distances to health care, concerns over privacy and stigma, and social isolation. PLH in rural areas have higher mortality rates than urban PLH. We aimed to understand factors associated with HIV care engagement and quality of life in rural US adults over age 50. Methods: We conducted a cross‐sectional study to evaluate the association between patient‐level factors and a combined outcome variable encompassing multiple aspects of care engagement. Findings: Either online or on paper, 446 participants completed our survey. One‐third of the participants (33%) were from the southern United States; one‐third were women; one‐third were non‐White; and 24% completed the survey on paper. In multiple regression analysis, lower income, residing in the southern United States, lacking internet access at home, not having an HIV specialist provider, higher levels of stress, living alone, and longer distance to an HIV provider were all associated with lower engagement in HIV care. Conclusions: Our findings demonstrated multiple potential options for interventions that could improve care engagement, such as providing and enhancing access to technology for health care engagement and remotely delivering social support and mental health services. Research on such potential interventions is needed for older, rural PLH. [ABSTRACT FROM AUTHOR]

Inconsistent engagement in pelvic floor muscle exercise (PFME) among patients with prostate cancer (PC) following radical prostatectomy may have contributed to varying effectiveness in improving urinary incontinence across studies. Identifying factors influencing engagement can help develop effective interventions to maximize participation, enhance urinary function and improve quality of life (QoL). This scoping review aims to systematically search for factors influencing PFME engagement among post radical prostatectomy patients managing urinary incontinence. Eligible publications in English were identified from various databases, including PubMed, CINAHL, ProQuest, PsycINFO and Scopus. A health science librarian was consulted to assist in formulating search terms, encompassing PC, PFME terms and influencing factors terms. We employed Colandrapp™ for data extraction, focusing on key themes such as study characteristics, PFME education and training, recommended sessions, engagement rates and factors influencing PFME engagement following radical prostatectomy. Results were presented in tables and supplemented by a narrative discussion addressing gaps in research knowledge. The synthesis drew from a diverse body of literature, blending quantitative and qualitative approaches, to contribute to a comprehensive understanding of PFME engagement factors. Twelve papers, based on 10 studies published between 2011 and 2018, met our inclusion criteria. The reviewed studies primarily employed longitudinal quantitative designs, except for one study that utilized a mixed‐method design. Only three studies incorporated theories to guide the selection of potential factors influencing PFME engagement. The factors examined across the reviewed studies encompassed aspects related to the patient–partner relationship, patient's action control, planning (dyadic or individual), self‐efficacy, perceived urinary incontinence and the patient–provider relationship. We observed conflicting findings regarding the factors influencing PFME engagement across studies. Our review underscores the importance of theory‐informed studies using rigorous methodology and precise theoretical and operational definitions of potential factors. Such studies can help pinpoint the most influential factors to enhance PFME engagement and, ultimately, improve symptoms and QoL for PC patients. The scoping review also showed critical implications for nursing practice. Nurses should develop individualized and culturally sensitive interventions, integrate health behaviour change theories, assess patient–partner relationships and action control and consider intention's mediating role in the enhancement of PFME engagement following radical prostatectomy. [ABSTRACT FROM AUTHOR]

Introduction: Spinal cord stimulation (SCS) is a well‐established treatment option for chronic pain. Pain over the implantable pulse generator, or pocket pain, is an incompletely understood risk of SCS implantation which may limit the efficacy of treatment and patient quality of life. The goal of this narrative review is to analyze the literature to gain a more thorough understanding of the incidence and risk factors for the development of pocket pain to help guide treatment options and minimize its occurrence in the future. Methods: A literature review was conducted investigating the development of pocket pain in patients with SCS for the management of a variety of pain conditions. Results: In total, 305 articles were included in the original database search and 50 met the criteria for inclusion. The highest level of evidence for papers that specifically investigated pocket pain was level III. Four retrospective, observational analyses included pocket pain as a primary outcome. The remainder of the included studies listed pocket pain as an adverse event of SCS implantation. Conclusions: There is a relative dearth of primary literature that examines the incidence, characteristics, and health economic implications of pocket pain in patients with SCS. This highlights the need for large‐scale, high‐quality prospective or randomized controlled trials examining pocket pain. This may ultimately help prevent and reduce pocket pain leading to improved efficacy of treatment and greater patient quality of life. [ABSTRACT FROM AUTHOR]

Purpose: Rural older people living with HIV (PLH) in the United States are a population of growing size and significance. A better understanding of factors associated with quality of life (QOL), depressive symptoms, and stress in this population—especially modifiable factors—could inform future interventions. Methods: Online or on paper, we surveyed 446 PLH aged 50+ residing in rural counties across the United States (Mage = 56, 67% male, 67% White, and 23% Black). Associations between social support, HIV stigma, satisfaction with medical care, discrimination in health care settings, and structural barriers and health‐related QOL, depressive symptoms, and perceived stress were assessed using multiple linear regressions. Findings: Controlling for demographics, greater social support was associated with better QOL, fewer depressive symptoms, and less stress. Greater HIV stigma was associated with more depressive symptoms and stress. Satisfaction with care was associated with better QOL and less stress. Discrimination in medical settings was associated with lower QOL and more depressive symptoms and stress. Finally, experiencing more structural barriers was associated with lower QOL and more depressive symptoms and stress. Conclusions: In addition to engagement in care and viral suppression, QOL and mental health are also critical considerations for rural older PLH. Increasing social support, reducing or providing skills to cope with HIV stigma, improving quality of care, reducing discrimination and stigma in medical settings, and reducing or mitigating the impact of structural barriers present potential targets for interventions aiming to improve the well‐being of older rural PLH. [ABSTRACT FROM AUTHOR]

Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well‐being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a "spaghetti‐like" way. This strong focus on one aspect of the situation, or one "spaghetti" strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti‐like thoughts into a waffle‐like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual‐level application of the FQOL theory to plan and evaluate the benefits of a peer‐mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual‐level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project. [ABSTRACT FROM AUTHOR]

Are the clean intermittent catheterization (CIC)‐cgQ and the CIC‐childQ feasible and generate valid measures of success performing CIC? CIC is the primary treatment for neurogenic bladder. However, instituting CIC with children can be challenging. Currently there are no validated instruments to measure the abilities of paediatric patients and their caregivers to perform CIC. The purpose of this study was to evaluate the validity and reliability of a modified version of the Intermittent Self Catheterization Questionnaire (ISC‐Q) in children with neurogenic bladder and their caregivers performing CIC. Children with spinal dysraphism, such as myelomeningocele (MMC) may face urologic challenges related to neurogenic bladder including renal compromise, recurrent urinary tract infections, and urinary incontinence due to bladder deterioration. CIC is an important intervention in the management of patients with neurogenic bladder. There are no valid tools currently available to measure the success of CIC in paediatric patients or their caregivers. A non‐experimental, psychometric research design was employed for this pilot study. Data collection was performed using online and paper surveys. The ISC‐Q was modified into two versions for use in the United States, one for caregivers of children on CIC (CIC‐cgQ) and one for paediatric patients on CIC (CIC‐childQ). A convenience sample of subjects was recruited from Spinal Differences Clinic and the local spina bifida support group. Informed consent was embedded in the invitation letter/email with survey completion indicating consent to participate. Criterion related validity was described using known group sum scores along with Cronbach's α for internal reliability. The tools were pilot tested on 15 caregivers and four children. Cronbach's alphas were.84 and.83 for the caregivers and children, respectively. Subjects identified a priori as successful with CIC scored higher than those identified as unsuccessful. The CIC‐cgQ and the CIC‐childQ are valid and reliable measures of the impact of CIC on the lives of caregivers and children. Future studies with larger sample sizes will allow further psychometric testing. This instrument gives researchers the ability to measure the impact of CIC on the lives of children and caregivers. [ABSTRACT FROM AUTHOR]

Background: No comprehensive assessment of disorders of gut‐brain interaction (DGBI) in the United States (US) national population has been published in the past three decades. We aimed to provide an updated picture of DGBI in the United States and associated factors, using data from two national Internet surveys. Methods: Data were analyzed from 1949 people surveyed in 2015, and 2023 people surveyed in 2017 as a part of the Rome Foundation Global Epidemiology Study (RFGES). The surveys had nearly identical methodology and included the Rome IV Diagnostic Questionnaire and questions on demographics, quality of life (QoL), emotional symptoms, and healthcare utilization. Key Results: The prevalence of having any DGBI was 36.0% and 39.9% in the two surveys. Prevalence estimates for the 22 DGBI assessed were broadly comparable between the surveys, as their 95% confidence intervals overlapped for every disorder. Females had DGBI more commonly than males in both surveys (odds ratios 1.66 and 1.52), and people of age 65 and older had lower DGBI prevalence than younger age groups. Having DGBI was associated in both surveys with significant QoL impairment, elevated anxiety, depression and somatization symptoms, and increased doctor visits. Conclusions and Inferences: Approximately 4 out of every 10 US adults have a DGBI; more commonly women and people under the age of 65. DGBI adversely affect QoL and emotional well‐being and increase healthcare needs. The similarity of findings between the two surveys supports the reliability of DGBI prevalence estimates obtained with the Internet survey method used globally in the RFGES. [ABSTRACT FROM AUTHOR]

The article offers information on the 1977 seminal Milbank Quarterly article by John and Sonja McKinlay titled "The Questionable Contribution of Medical Measures to the Decline of Mortality in the United States in the Twentieth Century."

Objective: A concept elicitation, cognitive debriefing, and usability study was undertaken to: (1) explore migraine symptoms and day‐to‐day impacts; (2) determine the comprehensiveness and comprehensibility of the previously developed 24‐Hour Migraine Quality of Life Questionnaire electronic patient‐reported outcome (24‐Hr MQoLQ ePRO) items, and the appropriateness and understanding of the recall period, response options, and instructions; and (3) assess the usability on an electronic hand‐held device. Methods: Eleven United States English‐speaking people with episodic migraine were recruited to participate in one‐on‐one interviews, which followed methods appropriate for concept elicitation, cognitive debriefing, and usability testing. Interviews were audio‐recorded, transcribed, and analyzed following the constant comparative method. Results: Participants had a mean age of 42 years, and 8 were female. Through spontaneous mention or probing, all concepts of the 24‐Hr MQoLQ ePRO were endorsed by a majority of the participants. Cognitive interviewing confirmed the 24‐Hr MQoLQ ePRO instructions were clear, meaningful, and important to assess as symptoms and day‐to‐day impacts experienced as a result of migraine. Overall impressions of the ePRO device were overwhelmingly favorable, and the ePRO device was preferred to paper and pencil by all participants. Participant responses regarding the level of headache pain that would be acceptable in order to continue to go about daily activities ranged from 3 to 6, on a scale of 0 to 10, with 0 being "no headache" and 10 being "the worst headache." Conclusions: The 24‐Hr MQoLQ ePRO is content‐valid and appropriate for inclusion in future acute treatment for migraine studies designed to measure the symptoms and health‐related quality of life of migraine. [ABSTRACT FROM AUTHOR]

Racial discrimination has been increasingly reported to have a causal link with morbidity and mortality of Black Americans, yet this issue is rarely addressed in a public health perspective. Racism affects health at different levels: institutional racism is a structural and legalized system that results in differential access to health services; cultural racism refers to the negative racial stereotypes, often reinforced by media, that results in poorer psychological and physiological wellbeing of the minorities. Lastly, interpersonal racism refers to the persistence of racial prejudice that seriously undermines the doctor-patient relationship. After analysing these concepts with examples and relevant studies, this paper explores current literature. Racism as a Determinant of Health: A Systematic Review and Meta-Analyses (Paradies et al, 2015) is the most recent and comprehensive research on the issue, yet it cannot be used to base public health interventions as it contains several limitations. Forward Through Ferguson: A Path Toward Racial Equity (Ferguson Commission, 2015) is a report that identifies 4 priority areas for framing public health interventions: Racial Equity, Justice for All, Youth at the Centre and Opportunity to Thrive. This study represents an important milestone in the application of public health on racial injustices, yet racism must be tackled with a sustained, multilevel, and interdisciplinary approach. In conclusion, this paper addresses how public health interventions can empower Black minorities and bring forward long-term policies. Racism is a structural and long-standing system that can be eliminated only with the collective effort., (© 2018 John Wiley & Sons, Ltd.)

Solid‐organ transplantation is the treatment of choice for end‐stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self‐Management Theory and focuses on family self‐management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family–nurse communication and family self‐management behaviors for family members of pediatric transplant recipients. [ABSTRACT FROM AUTHOR]

Mounting evidence across different disciplines suggests that early-life conditions can have consequences on individual outcomes throughout the life cycle. Relative to other developed countries, the United States fares poorly on standard indicators of early-life health, and this disadvantage may have profound consequences not only for population well-being, but also for economic growth and competitiveness in a global economy. In this paper, we first discuss the research on the strength of the link between early-life health and adult outcomes, and then provide an evidence-based review of the effectiveness of existing U.S. policies targeting the early-life environment. We conclude that there is a robust and economically meaningful relationship between early-life conditions and well-being throughout the life cycle, as measured by adult health, educational attainment, labor market attachment, and other indicators of socioeconomic status. However, there is some variation in the degree to which current policies in the United States are effective in improving early-life conditions. Among existing programs, some of the most effective are the Special Supplemental Program for Women, Infants, and Children (WIC), home visiting with nurse practitioners, and high-quality, center-based early-childhood care and education. In contrast, the evidence on other policies such as prenatal care and family leave is more mixed and limited. [ABSTRACT FROM AUTHOR]

Background: Stroke survivors might perceive their quality of life (QoL) as being affected even years after onset. The purpose of this review was to go through the literature to identify factors related to QoL for persons with stroke in China and Western countries for possible similarities and differences in their respective cultural views. Method: A narrative literature review was conducted on the papers identified by searching PubMed, EBSCO/CINAHL, EMBASE, PsycINFO, China National Knowledge Infrastructure and Wanfang Data that published up to November 2016. Factors predicting QoL after stroke were extracted, and comparisons were made between Chinese and Western studies respecting cultural aspects. Results: A total of 43 articles were included in this review, with 31 conducted in Western countries and 12 in China. Predictors of QoL included Demographic factors: age, gender, marital status, education level, socioeconomic status; Clinically related factors: severity of stroke, physical function, depression/anxiety, cognitive impairment, incontinence and other comorbidities; Environmental factors: residential status, social support, social participation; and Individual factors: coping strategies and self‐perception. Being married and resident at home might be associated with the perception of QoL differently between Chinese and Western survivors. Conclusions: Most predictors of QoL in stroke survivors were the same in China and the Western countries. However, their QoL might be predicted differently regarding to the individualistic and collectivistic cultural differences. [ABSTRACT FROM AUTHOR]

Background: High‐income countries offer social assistance (welfare) programs to help alleviate poverty for people with little or no income. These programs have become increasingly conditional and stringent in recent decades based on the premise that transitioning people from government support to paid work will improve their circumstances. However, many people end up with low‐paying and precarious jobs that may cause more poverty because they lose benefits such as housing subsidies and health and dental insurance, while incurring job‐related expenses. Conditional assistance programs are also expensive to administer and cause stigma. A guaranteed basic income (GBI) has been proposed as a more effective approach for alleviating poverty, and several experiments have been conducted in high‐income countries to investigate whether GBI leads to improved outcomes compared to existing social programs. Objectives: The aim of this review was to conduct a synthesis of quantitative evidence on GBI interventions in high‐income countries, to compare the effectiveness of various types of GBI versus "usual care" (including existing social assistance programs) in improving poverty‐related outcomes. Search Methods: Searches of 16 academic databases were conducted in May 2022, using both keywords and database‐specific controlled vocabulary, without limits or restrictions on language or date. Sources of gray literature (conference, governmental, and institutional websites) were searched in September 2022. We also searched reference lists of review articles, citations of included articles, and tables of contents of relevant journals in September 2022. Hand searching for recent publications was conducted until December 2022. Selection Criteria: We included all quantitative study designs except cross‐sectional (at one timepoint), with or without control groups. We included studies in high income countries with any population and with interventions meeting our criteria for GBI: unconditional, with regular payments in cash (not in‐kind) that were fixed or predictable in amount. Although two primary outcomes of interest were selected a priori (food insecurity, and poverty level assessed using official, national, or international measures), we did not screen studies on the basis of reported outcomes because it was not possible to define all potentially relevant poverty‐related outcomes in advance. Data Collection and Analysis: We followed the Campbell Collaboration conduct and reporting guidelines to ensure a rigorous methodology. The risk of bias was assessed across seven domains: confounding, selection, attrition, motivation, implementation, measurement, and analysis/reporting. We conducted meta‐analyses where results could be combined; otherwise, we presented the results in tables. We reported effect estimates as standard mean differences (SMDs) if the included studies reported them or provided sufficient data for us to calculate them. To compare the effects of different types of interventions, we developed a GBI typology based on the characteristics of experimental interventions as well as theoretical conceptualizations of GBI. Eligible poverty‐related outcomes were classified into categories and sub‐categories, to facilitate the synthesis of the individual findings. Because most of the included studies analyzed experiments conducted by other researchers, it was necessary to divide our analysis according to the "experiment" stage (i.e. design, recruitment, intervention, data collection) and the "study" stage (data analysis and reporting of results). Main Results: Our searches yielded 24,476 records from databases and 80 from other sources. After screening by title and abstract, the full texts of 294 potentially eligible articles were retrieved and screened, resulting in 27 included studies on 10 experiments. Eight of the experiments were RCTs, one included both an RCT site and a "saturation" site, and one used a repeated cross‐sectional design. The duration ranged from one to 5 years. The control groups in all 10 experiments received "usual care" (i.e. no GBI intervention). The total number of participants was unknown because some of the studies did not report exact sample sizes. Of the studies that did, the smallest had 138 participants and the largest had 8019. The risk of bias assessments found "some concerns" for at least one domain in all 27 studies and "high risk" for at least one domain in 25 studies. The risk of bias was assessed as high in 21 studies due to attrition and in 22 studies due to analysis and reporting bias. To compare the interventions, we developed a classification framework of five GBI types, four of which were implemented in the experiments, and one that is used in new experiments now underway. The included studies reported 176 poverty‐related outcomes, including one pre‐defined primary outcome: food insecurity. The second primary outcome (poverty level assessed using official, national, or international measures) was not reported in any of the included studies. We classified the reported outcomes into seven categories: food insecurity (as a category), economic/material, physical health, psychological/mental health, social, educational, and individual choice/agency. Food insecurity was reported in two studies, both showing improvements (SMD = −0.57, 95% CI: −0.65 to −0.49, and SMD = −0.41, 95% CI: −0.57 to −0.26) which were not pooled because of different study designs. We conducted meta‐analyses on four secondary outcomes that were reported in more than one study: subjective financial well‐being, self‐rated overall physical health, self‐rated life satisfaction, and self‐rated mental distress. Improvements were reported, except for overall physical health or if the intervention was similar to existing social assistance. The results for the remaining 170 outcomes, each reported in only one study, were summarized in tables by category and subcategory. Adverse effects were reported in some studies, but only for specific subgroups of participants, and not consistently, so these results may have been due to chance. Authors' Conclusions: The results of the included studies were difficult to synthesize because of the heterogeneity in the reported outcomes. This was due in part to poverty being multidimensional, so outcomes covered various aspects of life (economic, social, psychological, educational, agency, mental and physical health). Evidence from future studies would be easier to assess if outcomes were measured using more common, validated instruments. Based on our analysis of the included studies, a supplemental type of GBI (provided along with existing programs) may be effective in alleviating poverty‐related outcomes. This approach may also be safer than a wholesale reform of existing social assistance approaches, which could have unintended consequences. [ABSTRACT FROM AUTHOR]

The Surgeon General's Report, Oral Health in America, is the first comprehensive assessment of oral, dental, and craniofacial health in the history of our nation. The intent of this report is to alert all Americans to the full meaning of oral health and its importance to general health and well-being across the life span. Moreover, the report has been released at a time of enormous changes in human history as well as opportunities. The convergence of public health policies, "quality of life" expectations, global informatics, a new century of biotechnology, the advent of nanotechnology, the completion of the human genome project, changes in the management of health care, and the acknowledgment of enormous health disparities heralds a call to action. These changes affect children and their caregivers and the elderly. They also affect the social, economic, and health issues associated with special patients, including those with developmental disabilities. This paper highlights dentistry's future and how oral health is broadening the impact on patient and community health and dental practice, with a focus on children's oral health. The paper provides recommendations and suggests a call to action. [ABSTRACT FROM AUTHOR]

This paper is a statement of the American Geriatrics Society's (AGS) core policy priorities and the Society's positions on federal programs and policies that support older Americans as articulated to the new administration. Among the AGS priorities discussed in this paper are health reform, Medicare, and Medicaid. The AGS is committed to leveraging its expertise to inform regulatory and legislative policy proposals. [ABSTRACT FROM AUTHOR]

This paper provides results of a longitudinal study of 27 mentally ill prison inmates who were released from Ohio state prisons in 1994-1996. The object of this paper is to test the hypothesis that subjects who receive better social support will experience more positive social adjustment, higher quality of life, and lower recidivism. Subjects, identified by prison staff, were interviewed and given independent psychological evaluations shortly before their release. They were then interviewed repeatedly during the first year after their release from prison about many aspects of social adjustment. Social support, provided both in and after release from prison, was associated with higher quality of life after release from prison. Social support provided in either context, however, was not significantly related to criminal recidivism or psychiatric hospitalization after release from prison. [ABSTRACT FROM AUTHOR]

Earlier studies by Liu on Quality of Life (QOL) indicators have pointed out the problems of concentration and interregional inequality among the fifty states in U.S.A. Noting that the interregional inequality problem has been gradually alleviated over the past two decades, this paper attempts to provide some rudimentary explanations about this converging phenomenon through a labor market adjusting process towards social, economic and spatial equilibrium. Published state data and QOL indicators developed by Liu for 1960, 1970 and 1978 tend to support the hypothesis that investment in human resources, especially through improved elementary and secondary education, would enhance social mobility which would in turn improve labor and capital productivity. The reduced regional inequality in economic QOL seemed to be more a response than a cause when compared to that in social QOL, because variations in educational expenditures were found to be more significantly related to the social QOL indicators than to the economic ones. [ABSTRACT FROM AUTHOR]

Background: Prostate cancer is the most common cancer among men in the United States. Treatment guidelines recommend active surveillance for low-risk prostate cancer, which involves monitoring for progression, to avoid or delay definitive treatments and their side effects. Despite increased uptake, adherence to surveillance remains a challenge. Methods: We conducted semi-structured, qualitative, virtual interviews based on the Theoretical Domains Framework (TDF), with men (15) who were or had been on active surveillance for their low-risk prostate cancer in 2020. Interviews were transcribed and coded under TDF's behavioral theory-based domains. We analyzed domains related to adherence to surveillance using constructivist grounded theory to identify themes influencing decision processes in adherence. Results: The TDF domains of emotion, beliefs about consequences, environmental context and resources, and social influences were most relevant to surveillance adherence-. From these four TDF domains, three themes emerged as underlying decision processes: trust in surveillance as treatment, quality of life, and experiences of self and others. Positive perceptions of these three themes supported adherence while negative perceptions contributed to non-adherence (i.e., not receiving follow-up or stopping surveillance). The relationship between the TDF domains and themes provided a theoretical process describing factors impacting active surveillance adherence for men with low-risk prostate cancer. Conclusions: Men identified key factors impacting active surveillance adherence that provide opportunities for clinical implementation and practice improvement. Future efforts should focus on multi-level interventions that foster trust in surveillance as treatment, emphasize quality of life benefits and enhance patients' interpersonal experiences while on surveillance to optimize adherence. [ABSTRACT FROM AUTHOR]

The article offers the author's insights on papers which discuss prices, information, and healthy lifestyle preferences of adults. The author says that the first article has used data from the National Longitudinal Survey of Youth 1979 group (NLSY79) to evaluate how lifestyle prices and factors of health care and food influence three behavioral variables. He notes that the second article the Panel Study of Income Dynamics to test how food availability and prices affect adult obesity in the U.S.

Background: A prospective, cross-sectional, international survey was conducted among patients and physicians to identify symptom perception and the impact of allergic rhinitis (AR) on health-related quality of life (HRQoL). This paper presents the results from the USA., Methods: Data were recorded by 447 patients and matched with data collected on these patients by primary care physicians or specialists. Tests to confirm a diagnosis of AR had been performed on 345 (77.2%) patients. Because of the intermittent nature of the disease, both physicians and patients recorded the presence, severity and impact of symptoms at the time of consultation, in addition to symptoms frequently, but not currently, present. Health-related quality of life was assessed using the Mini Rhinoconjunctivitis Quality of Life Questionnaire., Results: According to the physicians' assessment, a large proportion of patients had moderate or severe disease (62.6%; n = 280), persistent disease (47.0%; n = 213) and comorbidities such as asthma (28.4%; n = 127). Comparison of the physicians' and patients' assessment of disease severity found that patients rated their disease as more severe than physicians across all three types of AR (P < 0.001). At the time of the consultation, 44.0% (n = 197) of patients were suffering from nasal and ocular symptoms, and 23.7% (n = 106) of all patients reported that their current nasal and ocular symptoms were moderate or severe in nature. More than 50% of the patients surveyed (56.4%; n = 252) were using two or more medications for their AR. Health-related quality of life correlated negatively with the number of symptom-free days in the previous 4 weeks. Allergic rhinitis had a significantly greater impact on patients with more persistent disease compared with those with intermittent disease (2.3 +/- 1.3 vs 1.4 +/- 1.1; P < 0.001); nevertheless, approximately two-thirds of patients with intermittent disease reported some impairment of their professional or daily life as a result of AR., Conclusions: The results of this survey highlight the unmet needs of the many patients in the USA who present during routine care with moderate or severe and/or persistent disease and an associated high symptom burden and impaired HRQoL.

Coalitions are routinely employed across the United States as a method of mobilizing communities to improve local conditions that impact on citizens' well-being. Success in achieving specific objectives for environmental or structural community change may not quickly translate into improved population outcomes in the community, posing a dilemma for coalitions that pursue changes that focus on altering community conditions. Considerable effort by communities to plan for and pursue structural change objectives, without evidence of logical and appropriate intermediate markers of success could lead to wasted effort. Yet, the current literature provides little guidance on how coalitions might select intermediate indicators of achievement to judge their progress and the utility of their effort. The current paper explores the strengths and weaknesses of various indicators of intermediate success in creating structural changes among a sample of 13 coalitions organized to prevent exposure to HIV among high-risk adolescents in their local communities. [ABSTRACT FROM AUTHOR]

Transplantation is the treatment of choice for patients with end-stage renal disease. Despite complete or partial restoration of renal function, many recipients after transplant continue to self-identify as disabled. It is a designation required for federal healthcare assistance pre-transplant, but in some cases, post-transplantation, the designation is misapplied. When kidney recipients bear the label of disabled, regardless if the disability is real or perceived, they are less likely to participate in work and social activities. Although transplantation improves quality of life, for many recipients the designation of disability can extend an unintended, negative impact. It is well recognized that kidney recipients return to employment, education, and social activities after transplantation. However, there is a portion of the recipient population that can work but chooses not to engage. A large part of the phenomenon is related to disability status and the federal financing of kidney disease. This paper summarizes the history of the relationship between disability and kidney transplantation, the potential pitfalls associated with the relationship, and evidence-based strategies designed to mitigate or lead to mitigation of the unfavorable effects associated with misappropriated, perceived disability after kidney transplantation. [ABSTRACT FROM AUTHOR]

. The National Pain Study was a prospective, computer-based, descriptive survey of the pain experience of persons with a bleeding disorder conducted in the United States over a 28 month period from 2007 to 2009. The aim of this study was to (i) determine the language used by patients to describe and differentiate acute and persistent pain, (ii) describe pharmacological and non-pharmacological strategies utilized to control pain, (iii) assess the perceived effectiveness of current pain management on quality of life and, (iv) to determine who provides pain management to this population. One thousand, one hundred and four surveys were received. Only the responses of the 764 respondents who reported having hemophilia A or B were evaluated for this paper. Thirty nine percent of participants reported their pain was not well treated. The average acute pain score associated with a bleed reported was 5.97/10 while the average persistent pain score reported was 4.22/10. The most frequently reported word descriptors for acute pain were: throbbing, aching, sharp, tender and miserable. The most frequently reported word descriptors for persistent pain were aching, nagging, tiring, sharp, and tender. The most frequently reported pain strategies for acute and persistent pain included factor, rest, ice, elevation, and compression. Alcohol and illicit drugs were reportedly used to manage both acute pain as well as persistent pain. Primarily, short-acting opioids and acetaminophen were reported to treat both acute and persistent pain. Hematologists and primary care providers provide the majority of pain management for persons with hemophilia (PWH). Quality of life (QOL) scores were lowest in the domains of pain, energy/fatigue and physical problems indicating disruption of QOL. This substantiates under-recognition and under-treatment of pain in the hemophilia population when combined with the 39% of respondents who felt their pain was not well treated and literature in the general pain population of wide spread under-treatment of pain. Recommendations: The NPS is an initial step in recognizing the prevalence and description of pain in PWH. HTC providers should educate themselves in pain management techniques to better serve this population. Further research is necessary to develop specific pain management guidelines for the bleeding disorders population that include multimodal holistic treatment plans. [ABSTRACT FROM AUTHOR]

Heart failure (HF) is a major cause of mortality and morbidity, representing a leading cause of death and hospitalization among U.S. Medicare beneficiaries. Advances in science have generated effective interventions to reduce adverse outcomes in HF, particularly in patients with reduced left ventricular ejection fraction. Unfortunately, effective therapies for heart failure are often not utilized in an effective, safe, timely, equitable, patient-centered, and efficient manner. Further, the risk of adverse outcomes for HF remains high. The last decades have witnessed the growth of efforts to measure and improve the care and outcomes of patients with HF. This paper will review the evolution of quality measurement for HF, including a brief history of quality measurement in medicine; the measures that have been employed to characterize quality in heart failure; how the measures are obtained; how measures are employed; and present and future challenges surrounding quality measurement in heart failure. [ABSTRACT FROM AUTHOR]

Background Present day service systems evolved from the traditional model of disability intervention where the child with the disability and the family were viewed as pathological entities that needed to be fixed rather than supported. Scholars have increasingly called for a greater focus on the family in service delivery, but few studies have empirically examined the practical reality of such a shift. The present paper examines the disability-related formal service supports within the family quality of life (FQOL) framework in a sample of predominantly low-income, minority families in the USA. Methods Cross-sectional data collected from a convenience sample of 149 families using the Family Quality of Life Survey (FQOLS-2006) was analysed at the univariate, bivariate and multivariate levels. Results Over half of the families indicated that they needed more help from the service system, and the largest barrier to accessing services was a lack of information. Almost all families viewed service support as very important to their overall FQOL; however, only half of them were satisfied with the formal support that they were receiving. Less than half of the families reported having many service support opportunities and high attainment of service support, although most took high initiative in pursuing formal supports. The path model illustrated the complex inter-relationships between the six dimensions of service support. Conclusions Findings underscore the need for resources to empower families and the value of using the FQOLS-2006 to ascertain the service support needs and strengths of families. [ABSTRACT FROM AUTHOR]

ABSTRACT This paper examines the continued strong population growth in U.S. nonmetropolitan areas possessing high levels of natural amenities during the 1990s and the reasons for near convergence of growth across the top tiers of the amenity hierarchy. Based on estimated parsimonious spatial hedonic growth regressions, strong demand for high-amenity areas continued in the 1990s, but the converging of population growth across the top tiers appeared related to capitalization of amenity differences among the tiers into factor prices. Yet, evidence obtained from controlling for spatial effects suggests that the relative quality of life in the top two tiers had deteriorated. [ABSTRACT FROM AUTHOR]

Objective. In the US population, the prevalence of fibromyalgia is about 3.4% in women. For those who are affected, fibromyalgia is associated with significant limitations relating to quality of life, activity, and participation. Furthermore, fibromyalgia leads to serious socio-economic costs. The objective of the present paper is to describe the cognitive illness representations of women with fibromyalgia and to analyse their relationship to rehabilitation outcomes. Methods. The outcome was measured using the SF-36 and fibromyalgia impact questionnaire. The illness perceptions were assessed using the Illness Perception Questionnaire - revised. The prediction of outcome was done using hierarchical multiple regression analyses. Results. N = 245 patients are included in the sample. The patients attribute a multitude of symptoms to fibromyalgia and name numerous triggering factors. Illness representations are correlated with the illness impact at the beginning of rehabilitation and predict the outcome after the end of rehabilitation. Conclusion. The fact that illness representations turn out to be predictors of outcome, even when the baseline health status is statistically controlled, highlights the relevance of the illness representations of patients with fibromyalgia. Therefore, effective and efficient methods should be developed for integrating patient's illness beliefs into the management of the illness as early as possible. [ABSTRACT FROM AUTHOR]

Aim. This paper is a report of a study to survey early childhood cancer survivors' perceived health-related quality of life and its determinants and to estimate the reliability of known psychometric scales used in the measurement of these determinants. Background. Young adult survivors of childhood cancer are considered to be a high-risk, vulnerable population for experiencing medical and psychosocial sequelae from their treatment that can adversely affect their health-related quality of life. Achieving an adequate level of health-related quality of life among childhood cancer survivors has been identified as a significant outcome in measuring the success of cancer treatment for these survivors throughout the world. Method. An on-line survey approach was used, and data were collected from December 2005 to May 2006 in the United States of America. Specific determinants measured were physical health status, perceived sense of hopefulness, self-esteem, social support and affect. The internal consistency of the instruments to measure these constructs among early survivors of childhood cancer was evaluated. Findings. Early survivors of childhood cancer had a lower level of health-related quality of life, perceived self-esteem, physical health status and social support when compared with previously reported findings among samples of adolescents in active treatment for cancer, healthy same-age peers and other samples of childhood cancer survivors. Conclusion. Investigations using web-based approaches to measure determinants of health-related quality of life among young adult survivors of childhood cancer have the potential to include international samples of childhood cancer survivors. [ABSTRACT FROM AUTHOR]

The article focuses on the issue of attaining a global justice in the U.S. It examines some measures that would close the gap between the state of affairs and better enabling people to meet their basic needs. It explains that global poverty must be one of the most pressing obstacles to realizing global justice. The way in which people are depleting and destroying the global commons is another pressing and related issue. Moreover, the paper also explores how a concern individual can ground a case for more global taxation.

In their provocative paper, “Lung transplantation and survival in children with cystic fibrosis,” Liou and colleagues state that “Prolongation of life by means of lung transplantation should not be expected in children with cystic fibrosis. A prospective, randomized trial is needed to clarify whether and when patients derive a survival and quality of life benefit from lung transplantation.” Unfortunately, that conclusion is not supportable. Liou’s dataset introduced bias against transplantation by using covariates obtained well before the time of transplant (when predicted survival was good) and having a cohort with lower than expected post-transplant survival than reported elsewhere. The calculated hazard ratios are based on factors that may have changed between listing and transplant, and do not reflect true benefit on a patient by patient basis. The findings of the study are contrary to other studies using similar methods. Finally, recent changes in US lung transplant allocation policy may have made the study findings moot. In contrast to Liou’s suggestion to perform an ethically and logistically challenging randomized trial to verify the benefit of lung transplantation, a research agenda is recommended for pediatric lung transplantation for cystic fibrosis that focuses on developing strategies to continually reassess and maximize quality of life and survival benefit. [ABSTRACT FROM AUTHOR]

Abstract This paper examines the relationship between quality of life, rural development, and several socioeconomic variables. The analysis utilizes data obtained from a survey questionnaire administered to a random sample of more than 2,000 residents in West Virginia, and spatial data obtained by geocoding the survey respondents’ addressees. Quality of life is measured by a three-point categorical measure of overall satisfaction, and development is measured by a goods and services availability index. A simultaneous ordered probit model is used to examine the relationships. The empirical results are consistent with the theoretical predictions and indicate a simultaneous relationship between quality of life satisfaction and rural development. [ABSTRACT FROM AUTHOR]

Objective: This research study aims to identify the fundamental components of community adaptation for a culturally tailored care partner activation program for Filipino American family caregivers of patients with Alzheimer's Disease and related dementia (ADRD). Design: The study utilized focus group interviews with community nurse leaders, stakeholders, and family caregivers of patients with ADRD. Results: The research revealed that education and knowledge about the disease, community‐based services and facilities, support groups and resources, spiritual and cultural values, and access to transportation are all critical components for community adaptation. Conclusion: The findings suggest that a culturally tailored care partner activation program that incorporates these components can enhance the quality of life for Filipino American caregivers and their loved ones with ADRD. The nursing implications of the study underscore the importance of nurses being culturally competent and sensitive to the unique challenges faced by Filipino American caregivers. Nurses can provide valuable support to caregivers by educating them, connecting them with community resources, and advocating for culturally responsive care practices. [ABSTRACT FROM AUTHOR]

Numerous countries have recognized the need for improved surveillance data on the health of persons with intellectual and developmental disabilities (IDD). Federal agencies need additional information about the prevalence and health of persons with IDD to guide decisions about policies and programs. Without such data, health inequities and health needs of people with IDD can go unrecognized and be ignored, and resources may be misdirected. The priority areas for needed information, however, have not been well documented. To determine priorities for health data for persons with IDD, we conducted focus groups with three types of stakeholders from around the United States: researchers/practitioners, adults with IDD, and family members. Focus group dialogue was coded for themes and compared across stakeholder categories. Themes common to all groups included valuing people with IDD and respecting their self‐determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social, and sexual health; and access to quality health care, medications, and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID‐19. Findings have implications for establishing a health surveillance data system and for practice more generally. Health needs to be considered holistically, including physical, mental, social, and sexual health. A data framework needs to extend beyond a cross‐sectional comparative framework to include longitudinal tracking and monitoring conditions unique to persons with IDD. People with IDD may not trust nor disclose sensitive information about their disability and health to support persons and surveyors, which has implications for under‐reporting of prevalence of IDD and validity of proxy‐reporting. Input from multiple stakeholders is fundamental to developing a usable and relevant data collection system. [ABSTRACT FROM AUTHOR]

During the COVID‐19 pandemic, applied behavior analysis services for many autistic individuals were transitioned to telehealth. The current study assessed caregiver‐reported quality of life (QoL) and social validity for families of autistic children receiving only telehealth services (n = 96) or a combination of telehealth and in‐person services (n = 173). Barriers to the telehealth experience were analyzed via an ANOVA, and the impact of funding source was analyzed using an independent samples t‐test. Caregivers reported benefit across QoL and social validity items, with scores ranging from 3.31 to 4.44 (1 = least benefit, 5 = most benefit). While many caregivers reported no barriers regarding technology (44.61%), childcare (69.52%), and employment (64.68%), the presence of those barriers significantly impacted QoL and social validity scores. Funding source was not found to have a significant impact. Overall, caregivers found value in their child's telehealth services. Clinicians have an obligation to mitigate barriers to ensure the success of the intervention. [ABSTRACT FROM AUTHOR]

It is well established that many systemic adverse health conditions have manifestations in the oral cavity. The purpose of this paper is to summarize the available scientific evidence that describes the opposite effect, how adverse oral health conditions affect three aspects of daily living: 1) systemic health, 2) quality of life, and 3) economic productivity. Examples of oral health affecting systemic health include rheumatic fever patients who develop infective endocarditis from oral bacteria and organ transplant patients who develop severe complications from oral infections. Both systemic health and quality of life are compromised when edentulousness, xerostomia, soft tissue lesions, or poorly fitting dentures affect eating and food choices. Conditions such as oral clefts, missing teeth, severe malocclusion, or severe caries are associated with feelings of embarrassment, withdrawal, and anxiety. Oral and facial pain from dentures, temporomandibular joint disorders, and oral infections affect social interaction and daily behaviors. The results of oral disorders can be felt not only physically and socially but also economically in our society. Dental disease accounts for many lost work and school days. Lower wage earners and minorities are disproportionately affected. Although there are many studies that evaluate these relationships, most are case reports, cross-sectional studies, or studies restricted to small or unique population groups. Lack of standardized measurements make comparisons across studies difficult. More population-based and longitudinal studies are needed to better understand the nature of these relationships.

The dwelling is the arena of most interaction by the family as a group. It is well established that the family has lost some of its traditional functions. The thesis of this paper is that family functions are influenced by the characteristics of the home. Proposals to alleviate problems of inadequate housing among low-income groups of the world fail to consider what functions housing satisfies among various cultures, or within a given society. Descriptions of the "dream home" by rural residents of Georgia, Puerto Rico, and the Dominican Republic are analyzed to determine the functions performed by the house. There are culturally specific differences, but in general, the higher the level of living of a group, the more functions are satisfied within the home. The manipulation of "fixed-feature space" in the form of housing could be considered as a mechanism for giving the family new functions as well as bonds that hold it together. [ABSTRACT FROM AUTHOR]

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Charcot‐Marie‐Tooth disease (CMT) reduces health‐related quality of life (QOL) in children. We have previously developed and validated the English and Italian versions of the pediatric CMT‐specific QOL outcome measure (pCMT‐QOL) for children aged 8 to 18. There is currently no parent‐proxy CMT QOL outcome measure for use in clinical trials, which could provide complementary information in these children and adolescents. This study describes the validation studies conducted to develop the parent‐proxy version of the pCMT‐QOL outcome measure for children aged 8 to 18 years old. Development and validation of the parent‐proxy version of the pCMT‐QOL outcome measure for children aged 8 to 18 years old was iterative, involving identifying relevant domains, item pool generation, prospective pilot testing and clinical assessments, structured focus‐group interviews, and psychometric testing, conducted on parents of children with CMT seen at participating sites from the USA, United Kingdom, and Australia. We utilized previously described methods to develop a working parent‐proxy version of the pCMT‐QOL measure. From 2010 to 2016, the parent‐proxy pCMT‐QOL working version was administered to 358 parents of children with CMT aged 8 to 18, seen at the participating study sites of the Inherited Neuropathies Consortium. The resulting data underwent rigorous psychometric analysis, including factor analysis, test‐retest reliability, internal consistency, convergent validity, IRT analysis, and longitudinal analysis, to develop the final parent‐proxy version of the pCMT‐QOL outcome measure for children aged 8 to 18 years old. The parent‐proxy version of the pCMT‐QOL outcome measure is a reliable, valid, and sensitive proxy measure of health‐related QOL for children aged 8 to 18 with CMT. [ABSTRACT FROM AUTHOR]

Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long‐haulers' experience for an extended duration following a COVID‐19 infection. We draw on in‐depth interviews conducted in March–April 2021 with 20 working‐aged adults in the U.S. who self‐identified as long‐haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long‐haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age‐based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long‐haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long‐haulers face as they manage the consequences of this chronic illness. [ABSTRACT FROM AUTHOR]

Introduction: Thriving from Work is defined as the state of positive mental, physical, and social functioning in which workers' experiences of their work and working conditions enable them to thrive in their overall lives, contributing to their ability to achieve their full potential at work, at home, and in the community. The purpose of this study was to develop a psychometrically‐sound questionnaire measuring the positive contribution that work can have on one's well‐being both at, and outside of, their work. Methods: We used both a qualitative and quantitative approach of item reduction, domain mapping dimensionality testing, development of "long‐" and "short‐" versions of the questionnaire, reliability, and construct and criterion validity testing. This was established in two independent online samples of US based workers (n = 1550, n = 500). Results: We developed a bi‐factor model 30‐item long‐form and a uni‐factorial 8‐item short‐version. The long‐form measures both the latent construct of Thriving from Work and six domains (psychological/emotional; work‐life integration; social; experience of work; basic needs; health). Both long‐ and short‐ forms were found to have high empirical reliability (0.93 and 0.87 respectively). The short‐form captures 94% of variance of the long‐form. Construct and criterion validity were supported. Test‐retest reliability was high. Conclusions: The Thriving from Work Questionnaire appears to be a valid and reliable measure of work‐related well‐being in United States workers. Further testing is needed to refine and test the instrument in specific industries, unique worker populations, and across geographic regions. [ABSTRACT FROM AUTHOR]

Pelvic organ prolapse (POP) is a very common gynecological disorder greatly affecting the quality of life (QoL) of females in the society. Studies have shown that approximately 40% of women in the United States have POP that requires medical intervention. In clinical practice, there are four treatment options for POP: watchful waiting, conservative treatment, reconstructive surgery, and obliterative surgery. In this study, we utilize practical data obtained through surveys and clinical literature and develop a model to help physicians and POP patients dynamically select treatment options in order to maximize a patient's expected future QoL. Results from the model are presented in the form of optimal policy tables, which can be used by physicians and patients by entering several attributes as inputs, such as the patient's age, current observed QoL defined by the severity of POP symptoms, preferences over preserving coital function, and other potential restrictive conditions. The results show significant socioeconomic incentives for potential utilization of optimal treatment policies in POP treatment. We estimate based on QoL to dollar conversions that the expected value of improved QoL for an individual POP patient is around $10,000. When aggregated over the entire POP population seeking treatment, the total annual expected value for the society is at least $675 million under medium‐level valuations of QoL. Although the optimization‐based policies imply an overall increase of about $200 million in annual POP treatment costs, the net positive gains can make this trade‐off an acceptable one. [ABSTRACT FROM AUTHOR]

Objective: Since 2010, more than 527,000 refugees have resettled in the United States (US), most from Asia, fleeing war, violence, and persecution. However, there is little research that integrates findings about health among Southeast Asian refugees (SEAR). Design: We conducted an integrative review of studies that examined health status, risk factors, and barriers to healthcare access among SEAR in the US. We synthesized findings of studies published from 1980, when the Refugee Act was enacted, to 2022 using five databases. We reviewed 20 articles and data were extracted into a table for synthesis. Results: Participants were from Cambodia, Vietnam, Laos, Burma and the Thailand‐Myanmar border. Hypertension (12%–64%), hypercholesterolemia (37%–39%), diabetes (0.6%–27%), heart disease (7%), bone and muscle problems (23%–50%), and chronic pain (8%–51%) were most common physical health problems; and PTSD (45%–86%) and depression (20%–80%) were the most common mental health problems. Trauma, resettlement stress, lack of community or religious engagement were associated with mental health problems. Language differences, transportation, and lack of health insurance were the most significant obstacles to receiving healthcare. Conclusion: SEAR experienced worse physical and mental health than the general US population. Different patterns of disease were identified depending on gender, time settled in the US, and ethnic group. Qualitative and longitudinal studies will elucidate refugees' experience and should guide interventions. [ABSTRACT FROM AUTHOR]

Objective: Although symptom relief is a critical aspect for successful drug development in Sjögren's disease, patient experiences with Sjögren's‐related symptoms are understudied. Our objective was to determine how pain, dryness, and fatigue, the cardinal symptoms of Sjögren's disease, drive cluster phenotypes. Methods: We used data from the Sjögren's International Collaborative Clinical Alliance (SICCA) Registry and a Sjögren's Foundation survey. We performed hierarchical clustering of symptoms by levels of dryness, fatigue, and pain. Using international and US cohorts, we performed multiple logistic regression analysis to compare the clusters, which included comparisons of differences in symptoms, quality of life (QoL), medication use, and systemic manifestations. Results: Four similar clusters were identified among 1,454 SICCA registrants and 2,920 Sjögren's Foundation survey participants: 1) low symptom burden in all categories (LSB); 2) dry with low pain and low fatigue (DLP); 3) dry with high pain and low to moderate fatigue (DHP); and 4) high symptom burden in all categories (HSB). Distribution of SICCA registrants matching the symptom profile for each cluster was 10% in the LSB cluster, 30% in the DLP cluster, 23% in the DHP cluster, and 37% in the HSB cluster. Distribution of survey participants matching the symptom profile for each cluster was 23% in the LSB cluster, 14% in the DLP cluster, 21% in the DHP cluster, and 42% in the HSB cluster. Individuals in the HSB cluster had more total symptoms and lower QoL but lower disease severity than those in the other clusters. Despite having milder disease as measured by laboratory tests and organ involvement, individuals in the HSB cluster received immunomodulatory treatment most often. Conclusion: We identified 4 symptom‐based Sjögren's clusters and showed that symptom burden and immunomodulatory medication use do not correlate with Sjögren's end‐organ or laboratory abnormalities. Findings highlight a discordance between objective measures and treatments and offer updates to proposed symptom‐based clustering approaches. [ABSTRACT FROM AUTHOR]

Little is known about how biological and psychological consequences of adolescent stressful life events (SLEs) are jointly associated with socioeconomic and relational outcomes in adulthood. To address this gap, the present study involved testing a model based on the life course perspective that posits adolescent SLE trajectories produce parallel trajectories of depressive symptoms and weight status, which are jointly associated with socioeconomic status and intimate relationship quality in adulthood. Prospective data over 13 years from a nationally representative sample of 11,677 US adolescents was utilized. The results demonstrated that trajectories of BMI and depressive symptoms, which showed contemporaneous and longitudinal comorbidities over the early life course, were influenced by adolescent SLEs. Both BMI and depressive symptoms trajectories are additively and jointly associated with socioeconomic status and intimate relationship quality in adulthood. Additionally, adolescent SLE trajectories are directly associated with these adult outcomes. These observed associations persisted even after controlling for early family socioeconomic adversity and race/ethnicity. The theoretical and practical implications of these findings are discussed. [ABSTRACT FROM AUTHOR]

Background: Children and adolescents with mild to moderate chronic kidney disease (CKD) are at high risk for mild but persistent impairment in executive functions, which have been associated with low health‐related quality of life (HRQOL) among children and adolescents with chronic health conditions. However, no similar link has been established among children and adolescents with mild to moderate CKD. Given the essential role executive functions play in the development of adequate cognitive, emotional and social skills, it is essential to gain a clearer understating of the magnitude and attributes of executive functions and its link to HRQOL in order to inform appropriate medical and educational interventions for this patient population. Objective: The aim of this study is to examine the relationship between executive functions, socio‐emotional functioning and HRQOL in children and adolescents with mild to moderate CKD. Methods: A cross‐sectional design was used for this secondary data analysis of 199 children and adolescents (ages 6–17) with mild to moderate CKD from the United States and Canada who receive care at hospitals associated with the Chronic Kidney Disease in Children Study (CKiD). Results: The presence of impairment in executive functions and socio‐emotional functioning (internalizing problems) significantly predicted lower HRQOL after controlling for key covariates (i.e., maternal education, anaemia and hypertension). Further, internalizing problems partially mediated the relationship between executive functions and HRQOL such that impairment in executive functions predicted lower HRQOL directly and indirectly by contributing to higher internalizing problems, which further contributed to low HRQOL. Conclusion: This study underscores the importance of executive functions and socio‐emotional functioning in the manifestation of HRQOL. Given that HRQOL is potentially compromised for many children and adolescents with mild to moderate CKD, it will be important for both clinicians and researchers to examine a range of factors, including executive functions and socio‐emotional functioning, in order to optimize HRQOL. [ABSTRACT FROM AUTHOR]