All hands on deck: The multidisciplinary rehabilitation assessment and management of hand function in persons with neuromuscular disorders.

Hand function is important in every aspect of our lives. Across a wide range of neuromuscular disorders-inherited ataxias, motor neuron diseases, polyneuropathies, and myopathies-people can experience losses in hand strength, tone, movement, dexterity, joint range, and sensation. Such changes can adversely affect function and independence in daily activities, reducing participation and quality of life. People with neuromuscular disorders (pwNMD) known to involve the hand should be assessed at regular intervals for changes both clinically and using impairment, performance, function, and patient-reported outcome measures as appropriate. A patient-centered approach to management is recommended, with clinicians partnering with the individual, their caregivers and the interprofessional teams to create personalized solutions that can overcome barriers to participation and best meet the goals of individuals affected by neuromuscular disorders. Management strategies should be multifaceted, and may include exercise, orthoses, assistive devices, technological solutions, environmental or task adaptations, medications, and/or surgery. Exercise recommendations and orthoses should be individualized and evolve based on disease progression, impairments, and functional limitations. While medications and surgery have a small role for specific clinical situations, there is a plethora of assistive and technological solutions to assist with basic and instrumental activities of daily living, work/education, and leisure for pwNMD with reduced hand function. In addition, clinicians should advocate for appropriate accommodations for reduced hand function at work/school, and the development of and adherence to legislation supporting accessibility and inclusion.

Physical job demands in pregnancy and associated musculoskeletal health and employment outcomes: a systematic review.

OBJECTIVE: A decline in musculoskeletal health during pregnancy is an underappreciated adverse outcome of pregnancy that can have immediate and long-term health consequences. High physical job demands are known risk factors for nontraumatic musculoskeletal disorders in the general working population. Evidence from meta-analyses suggest that occupational lifting and prolonged standing during pregnancy may increase risk of adverse pregnancy outcomes. This systematic review examined associations between occupational lifting or postural load in pregnancy and associated musculoskeletal disorders and related sequalae. DATA SOURCES: Five electronic databases (Medline, Embase, CINAHL, NIOSHTIC-2, and Ergonomic Abstracts) were searched from 1990 to July 2022 for studies in any language. A Web of Science snowball search was performed in December 2022. Reference lists were manually reviewed. STUDY ELIGIBILITY CRITERIA: Eligible studies reported associations between occupational lifting or postural load and musculoskeletal health or sequelae (eg, employment outcomes) among pregnant and postpartum workers. METHODS: Data were extracted using a customized form to document study and sample characteristics; and details of exposures, outcomes, covariates, and analyses. Investigators independently assessed study quality for 7 risk-of-bias domains and overall utility, with discrepant ratings resolved through discussion. A narrative synthesis was conducted due to heterogeneity. RESULTS: Sixteen studies (11 cohort studies, 2 nested case-control studies, and 3 cross-sectional studies) from 8 countries were included (N=142,320 pregnant and N=1744 postpartum workers). Limited but consistent evidence with variable quality ratings, ranging from critical concern to high, suggests that pregnant workers exposed to heavy lifting (usually defined as ≥22 lbs or ≥10 kg) may be at increased risk of functionally limiting pelvic girdle pain and antenatal leave. Moreover, reports of dose-response relationships suggest graded risk levels according to lifting frequency, ranging from 21% to 45% for pelvic girdle pain and 58% to 202% for antenatal leave. Limited but consistent evidence also suggests that postural load increases the risk of employment cessation. CONCLUSION: Limited but consistent evidence suggests that pregnant workers exposed to heavy lifting and postural load are at increased risk of pelvic girdle pain and employment cessation. Job accommodations to reduce exposure levels may promote safe sustainable employment for pregnant workers.

Effects of a peer-led physical activity program on psychosocial outcomes among breast cancer survivors.

OBJECTIVE: To examine the effects of three programs aimed at maintaining moderate-to-vigorous physical activity (MVPA) on breast cancer survivors' quality of life, physical functioning, fatigue and mood. METHODS: 161 survivors participated in a 12-month randomized controlled study and were assigned to one of three groups: Reach Plus, Reach Plus Message, or Reach Plus Phone. All participants received the same intervention for the first 3 months (weekly calls from peer coach) for MVPA adoption. In Months 4-9, Reach Plus monitored MVPA and received feedback reports. Reach Plus Message monitored MVPA and received weekly text/email messages and feedback reports. Reach Plus Phone participants monitored MVPA and received monthly calls from coaches and feedback reports. Intervention delivery ended at 9 months. Assessments were obtained at baseline, 3, 6, 9, and 12-months. Analyses used a series of longitudinal mixed effects models with subject-specific intercepts. RESULTS: All groups improved significantly across time on psychosocial measures. At 9 months, Reach Plus Message and Reach Plus Phone reported better physical functioning compared to Reach Plus (b = 8.27, 95% CI: [2.27, 14.27]; b = 4.89, 95% CI: [0.01, 10.53]) respectively). At 12 months, Reach Plus Message reported better physical functioning than Reach Plus (b = 4.52, 95% CI: [0.01, 9.75]. Participants who met national PA guidelines reported significantly lower fatigue and higher physical functioning (at 9 and 12 months), and improved mood (at 12 months). CONCLUSIONS: MVPA maintenance via weekly messages or monthly coach calls improved physical functioning. Maintaining MVPA at or above national recommendations was associated with improved physical functioning, mood and less fatigue.

Physical functioning in adolescents with perinatal HIV.

Perinatal HIV impacts on growth and development in childhood, with physical impairments such as growth limitations, decreased physical activity, reduced exercise tolerance and cardiopulmonary dysfunction continuing into adolescence. There is limited data on other physical functioning domains in perinatally HIV-infected adolescents (PHIVA) thus the aim of this study was to establish the physical sequelae of perinatal HIV in adolescents. This South African cross-sectional study compared PHIVA with HIV-negative adolescents, assessing anthropometry, muscle strength, endurance and motor performance. All ethical considerations were adhered to. The study included 147 PHIVA and 102 HIV-negative adolescents, aged 10-16 years. The majority (87.1%) of PHIVA were virally suppressed however, they still showed significant deficits in height (p < 0.001), weight (p < 0.001) and BMI (p = 0.004). Both groups performed poorly in muscle strength and endurance but did not differ significantly. In motor performance, the PHIVA scored significantly lower for manual dexterity and balance, with significantly more PHIVA with motor difficulty. A regression analysis showed that viral suppression predicted muscle strength (p = 0.032) and age positively predicted endurance (p = 0.044) and negatively predicated aiming and catching (p = 0.009). In conclusion, PHIVA face growth deficits and challenges with motor performance, especially with manual dexterity and balance.

Health-related quality of life, anxiety, depression, beliefs of medication, and self-efficacy in individuals with severe asthma - a population-based study.

OBJECTIVE: Individuals with severe asthma often report poor Health-related quality of life (HRQoL) and more research is essential to increase understanding of how they may be helped to improve HRQoL. The main aim of the current paper is to evaluate HRQoL, and possible factors influencing HRQoL, in individuals with severe asthma. The aim is also to explore associations among anxiety, depression, beliefs of medication, self-efficacy, and HRQoL among individuals with severe and other asthma as well as those with no asthma. METHODS: Participants with severe asthma (n = 59), other asthma (n = 526), and no asthma (n = 902) were recruited from West Sweden Asthma Study, a population-based study, which includes both questionnaire surveys and clinical examinations. RESULTS: Individuals with severe asthma had worse physical HRQoL (measured with SF-8) than those with other and no asthma (median 48.4, 51.9, and 54.3, respectively). They also had worse mental HRQoL (median 46.7) and reported higher anxiety and depression scores (measured using HADS, median 5.0 and 3.5, respectively) compared to no asthma (median 4.0 and 2.0, respectively). HRQoL was particularly affected among women with severe asthma. Individuals with severe asthma believed that their asthma medication was more necessary than those with other asthma, but they reported more concern for the medication. Asthma control and packyears predicted physical HRQoL and anxiety predicted mental HRQoL among individuals with severe asthma. CONCLUSIONS: Efforts to improve asthma control and to reduce anxiety may improve HRQoL in individuals with severe asthma. Especially, women with severe asthma seem to need support to improve their HRQoL. Reducing concerns with asthma medication is most likely essential as high concerns may lead to poor adherence, which in turn may negatively affect asthma control and HRQoL.

Mediational roles of stress-coping factors in the relationship between patient-perceived communication quality and physical functioning: racial difference between Chinese and Non-Hispanic White American breast cancer survivors.

PURPOSE: The assumption that patient-provider communication may mediate patients' sense of control over cancer to affect health outcomes has limited evidence. This study examines whether patient-perceived cancer care communication quality (PPCQ) mediates stress appraisal and coping behavior, affecting physical functioning across different racial groups. METHODS: Two hundred and twenty Chinese American and 216 non-Hispanic White (NHW) women (ages 28-80) with stage 0-III breast cancer, 1-5 years post-diagnosis, and without recurrence, enrolled and completed a cross-sectional telephone survey. Physical functioning was measured by the NIH-PROMIS short form. Validated measures of PPCQ, patients' evaluation of their socioeconomic well-being, stress appraisal (perceived severity and control), use of coping strategies, treatment-related symptoms, and comorbidities were also assessed. Path analyses were used to examine the mediation for each racial group. RESULTS: Regardless of race, treatment-related symptoms, comorbidities, and socioeconomic well-being were all directly related to physical functioning (p < 0.05). The impact of PPCQ on physical functioning was mediated by perceived control in the Chinese American group (p < 0.05), but not in the NHW group. Perceived severity and coping were not mediators of physical functioning in either group. CONCLUSIONS: The mediational pathway from PPCQ to perceived control to physical functioning in Chinese American survivors may be partially explained by their lower socioeconomic well-being and culturally valued conformity to physicians as a medical authority. These sociocultural dynamics reinforce the importance of cancer care communication. For NHW survivors, the impact of treatment-related symptoms and socioeconomic well-being on physical functioning outweighed their PPCQ and perceived control.

Fitness, Gray Matter Volume, and Executive Function in Cognitively Normal Older Adults: Cross-Sectional Findings From the AGUEDA Trial.

The aim of the study is to investigate the association of cardiorespiratory fitness (CRF) and muscular strength indicators with gray matter volume (GMV) and to study whether fitness-related regions of GMV are associated to executive function (EF) in cognitively normal older adults. Ninety-one cognitively normal older adults (71.69 ± 3.91 years; 57.14% females) participated in this study from the AGUEDA trial. CRF was measured by a 2-km walking test and a 6-min walking test. Muscular strength was measured by handgrip, biceps curl, squats, and isokinetic strength tests. T1-weigthed images were obtained through a magnetic resonance scan. GMV was determined by voxel-based morphometric analysis. Standardized EF tests were performed. CRF did not show any positive association with GMV. Handgrip strength was positively associated with GMV (p < 0.001) in nine regions (ß from 0.6 to 0.8 and k from 106 to 1927) and knee extension strength in three regions (ß from 0.4 to 0.5 and k from 76 to 2776). Squats strength was negatively associated with GMV (p < 0.001) in two regions (ß = -0.3, k = 1102 and k = 152) and the 2-km walking test in one region (ß = -0.4, k = 99). Only handgrip strength-related GMV was associated with cognitive flexibility (p = 0.039, ß = 0.215) and spatial working memory (p < 0.03, ß 0.247-0.317), but not with EF score (p > 0.05). Muscular strength, but no CRF, may be positively related to GMV in cortical and subcortical regions, with implications for specific cognitive domains rather than the overall EF score. Specifically, handgrip strength was the indicator most associated with higher GMV, while squats strength and CRF were negatively related to GMV. ClinicalTrials.gov identifier: NCT05186090.

Remotely monitored physical activity from older people with cardiac devices associates with physical functioning.

INTRODUCTION: Accelerometer-derived physical activity (PA) from cardiac devices are available via remote monitoring platforms yet rarely reviewed in clinical practice. We aimed to investigate the association between PA and clinical measures of frailty and physical functioning. METHODS: The PATTErn study (A study of Physical Activity paTTerns and major health Events in older people with implantable cardiac devices) enrolled participants aged 60 + undergoing remote cardiac monitoring. Frailty was measured using the Fried criteria and gait speed (m/s), and physical functioning by NYHA class and SF-36 physical functioning score. Activity was reported as mean time active/day across 30-days prior to enrolment (30-day PA). Multivariable regression methods were utilised to estimate associations between PA and frailty/functioning (OR = odds ratio, ß = beta coefficient, CI = confidence intervals). RESULTS: Data were available for 140 participants (median age 73, 70.7% male). Median 30-day PA across the analysis cohort was 134.9 min/day (IQR 60.8-195.9). PA was not significantly associated with Fried frailty status on multivariate analysis, however was associated with gait speed (ß = 0.04, 95% CI 0.01-0.07, p = 0.01) and measures of physical functioning (NYHA class: OR 0.73, 95% CI 0.57-0.92, p = 0.01, SF-36 physical functioning: ß = 4.60, 95% CI 1.38-7.83, p = 0.005). CONCLUSIONS: PA from cardiac devices was associated with physical functioning and gait speed. This highlights the importance of reviewing remote monitoring PA data to identify patients who could benefit from existing interventions. Further research should investigate how to embed this into clinical pathways.

Supportive eHealth Technologies and Their Effects on Physical Functioning and Quality of Life for People With Lung Cancer: Systematic Review.

BACKGROUND: Despite advancements in treatment and early diagnosis, people with lung cancer are not living as long as those with other cancers. The more common symptoms of lung cancer, such as breathlessness, fatigue, and depression, can be alleviated by improving patients' physical functioning. Therefore, good symptom management and improved health-related quality of life (HRQoL) are priorities in this patient group. However, current health care services have limited capacity to provide this support. One way to address this issue of health care resources is to empower patients to self-manage their condition using eHealth technologies. OBJECTIVE: The purpose of this review was to identify and assess available research on technologies that support persons with lung cancer to improve or maintain their physical functioning, HRQoL, or both. METHODS: Six databases-PubMed, Web of Science, CINAHL, MEDLINE, SPORTDiscus, and PsycINFO-were searched from January 1, 1990, to April 30, 2023. Studies were suitable for inclusion if the participants included people with lung cancer aged >18 years who had been exposed to a physical activity, exercise, or training intervention that was delivered via an electronic or web-based application with or without a comparator. Furthermore, the study had to report on the impact of the intervention on physical functioning and HRQoL. Studies that focused on telemedicine without a digital intervention were excluded. The Grading of Recommendations Assessment, Development, and Evaluation system was used to assess the quality of the included papers. Due to the heterogeneity of the studies, a narrative synthesis was undertaken. RESULTS: This review is reported in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. A total of 794 papers were initially identified through our search, of which, after screening, 8 (1%) were confirmed suitable for inclusion in the review. As 2 (25%) of the 8 papers reported on different stages of the same study, we included only 7 studies in our analysis. The studies were undertaken between 2010 and 2018 across multiple countries and aimed to develop a technology and test its feasibility or acceptance. The 7 technologies identified included web-based applications, mobile apps, and gaming consoles. The studies demonstrated impact on walking distance, muscle strength, balance, dyspnea symptoms, and cancer-related fatigue. HRQoL scores also showed improvement. CONCLUSIONS: The findings indicate that eHealth technologies can positively impact physical functioning and well-being for people with lung cancer, but there are limited studies that demonstrate the impact of these digital interventions over longer periods. None of the studies reported on the implementation or adoption of a mobile health or eHealth intervention in routine clinical practice, highlighting the need for further research in this area. TRIAL REGISTRATION: PROSPERO CRD42023414094; https://tinyurl.com/39hhbwyx.

Is There an Association Between Self-Reported Dual-Task Performance and Fear of Falling in Older Adults?

INTRODUCTION: Is there an association between self-reported dual-task performance and fear of falling in older adults? BACKGROUND/OBJECTIVES: Fear of falling tends to increase with age and can negatively impact dual-task abilities, leading to potential declines in overall quality of life. Therefore, it becomes crucial to evaluate dual-task performance in older adults, particularly prior to the onset of fear of falling. This study aims to investigate the potential association between self-reported dual-task performance and fear of falling in older adults. METHODS: A total of 51 individuals (19 females and 32 males) were recruited. The participants met the inclusion criteria were administered the Dual-Task Questionnaire (DTQ), Falls Efficiency Scale International, and Physical Activity Scale for the Elderly. Multiple linear regression was performed to predict DTQ scores based on age, body mass index, and Physical Activity Scale for the Elderly. RESULTS: A moderate positive correlation was found between Falls Efficiency Scale International scores and self-reported DTQ scores (r: .448, p: .001). Age, body mass index, and Physical Activity Scale for the Elderly were not found to be significant predictors of DTQ scores. CONCLUSIONS: Our study reveals a moderate positive association between fear of falling and self-reported dual-task performance in older adults. A direct relationship between physical activity performance, fear of falling, and self-reported dual-task performance was observed among older adults. Significance/Implications: Integrating self-reported measures like the DTQ in clinical evaluations can provide valuable insights into dual-task abilities of older adults.

The Impact of Multimorbidity Patterns on Changes in Physical Activity and Physical Capacity Among Older Adults Participating in a Year-Long Exercise Intervention.

This study investigated the impact of multimorbidity patterns on physical activity and capacity outcomes over the course of a year-long exercise intervention, and on physical activity 1 year later. Participants were 314 physically inactive community-dwelling men and women aged 70-85 years, with no contraindications for exercise at baseline. Physical activity was self-reported. Physical capacity measurements included five-time chair-stand time, 6-minute walking distance, and maximal isometric knee-extension strength. The intervention included supervised and home-based strength, balance, and walking exercises. Multimorbidity patterns comprised physician-diagnosed chronic disease conditions as a predictor cluster and body mass index as a measure of obesity. Multimorbidity patterns explained 0%-12% of baseline variance and 0%-3% of the change in outcomes. The magnitude and direction of the impact of unique conditions varied by outcome, time point, and sex. Multimorbid older adults with no contraindications for exercise may benefit from multimodal physical training.

Integration of palliative care in the management of multiple chronic conditions: An expert consensus paper with policy implications.

BACKGROUND: This paper was jointly developed from members of the American Academy of Nursing Expert Panels on Palliative and End of Life Care, Primary Care, Aging, Acute and Critical Care, and two expert physicians. PURPOSE: The overarching goal is to promote the integration of palliative care as symptom management into the primary care setting to transform care for patients living with multiple chronic conditions. METHODS: Embracing the recommendations made by the World Health Organization, the U.S. Department of Health and Human Services, and the National Academies of Science Engineering and Medicine to initiate palliative care or symptom management at the onset of nonreversible or serious chronic conditions. DISCUSSION: Earlier palliative interventions reduce disease exacerbation, prevent hospitalization, maintain physical functioning, and support health-related quality of life. CONCLUSION: This is a needed paradigm shift as the nation's aging population escalates, Americans are living longer, and the healthcare costs for the nation are unprecedented.

Long-term cardiovascular health status and physical functioning of nonhospitalized patients with COVID-19 compared with non-COVID-19 controls.

Coronavirus disease 2019 (COVID-19) is reported to have long-term effects on cardiovascular health and physical functioning, even in the nonhospitalized population. The physiological mechanisms underlying these long-term consequences are however less well described. We compared cardiovascular risk factors, arterial stiffness, and physical functioning in nonhospitalized patients with COVID-19, at a median of 6 mo postinfection, versus age- and sex-matched controls. Cardiovascular risk was assessed using blood pressure and biomarker concentrations (amino-terminal pro-B-type-natriuretic-peptide, high-sensitive cardiac troponin I, C-reactive protein), and arterial stiffness was assessed using carotid-femoral pulse wave velocity. Physical functioning was evaluated using accelerometry, handgrip strength, gait speed and questionnaires on fatigue, perceived general health status, and health-related quality of life (hrQoL). We included 101 former patients with COVID-19 (aged 59 [interquartile range, 55-65] yr, 58% male) and 101 controls. At 175 [126-235] days postinfection, 32% of the COVID-19 group reported residual symptoms, notably fatigue, and 7% required post-COVID-19 care. We found no differences in blood pressure, biomarker concentrations, or arterial stiffness between both groups. Former patients with COVID-19 showed a higher handgrip strength (43 [33-52] vs. 38 [30-48] kg, P = 0.004) and less sleeping time (8.8 [7.7-9.4] vs. 9.8 [8.9-10.3] h/day, P < 0.001) and reported fatigue more often than controls. Accelerometry-based habitual physical activity levels, gait speed, perception of general health status, and hrQoL were not different between groups. In conclusion, one in three nonhospitalized patients with COVID-19 reports residual symptoms at a median of 6 mo postinfection, but we were unable to relate these symptoms to increases in cardiovascular risk factors, arterial stiffness, or physical dysfunction.NEW & NOTEWORTHY We examined cardiovascular and physical functioning outcomes in nonhospitalized patients with COVID-19, at a median of 6 mo postinfection. When compared with matched controls, minor differences in physical functioning were found, but objective measures of cardiovascular risk and arterial stiffness did not differ between groups. However, one in three former patients with COVID-19 reported residual symptoms, notably fatigue. Follow-up studies should investigate the origins of residual symptoms and their long-term consequences in former, nonhospitalized patients with COVID-19.

Clinical and patient-reported outcome profile of patients with hepatitis B viral infection from the Global Liver Registry™.

Chronic hepatitis B (CHB) infection is one of the most common causes of cirrhosis and liver cancer worldwide. Our aim was to assess clinical and patient-reported outcome (PRO) profile of CHB patients from different regions of the world using the Global Liver Registry. The CHB patients seen in real-world practices are being enrolled in the Global Liver Registry. Clinical and PRO (FACIT-F, CLDQ, WPAI) data were collected and compared to baseline data from CHB controls from clinical trials. The study included 1818 HBV subjects (48 ± 13 years, 58% male, 14% advanced fibrosis, 7% cirrhosis) from 15 countries in 6/7 Global Burden of Disease super-regions. The rates of advanced fibrosis varied (3-24%). The lowest PRO scores across multiple domains were in HBV subjects from the Middle East/North Africa (MENA), the highest - Southeast/East and South Asia. Subjects with advanced fibrosis had PRO impairment in 3 CLDQ domains, Activity of WPAI (p < 0.05). HBV subjects with superimposed fatty liver had more PRO impairments. In multivariate analysis adjusted for location, predictors of PRO impairment in CHB included female sex, advanced fibrosis, and non-hepatic comorbidities (p < 0.05). In comparison to Global Liver Registry patients, 242 controls from clinical trials had better PRO scores (Abdominal, Emotional, and Systemic scores of CLDQ, all domains of WPAI) (p < 0.05). In multivariate analysis with adjustment for location and clinicodemographic parameters, the associations of PROs with the enrollment setting (real-life Global Liver Registry vs. clinical trials) were no longer significant (all p > 0.10). The clinico-demographic portrait of CHB patients varies across regions of the world and enrollment settings. Advanced fibrosis and non-hepatic comorbidities are independently associated with PRO impairment in CHB patients.

Association between clinical findings and the presence of lumbar spine osteoarthritis imaging features: A systematic review.

OBJECTIVE: Spinal osteoarthritis is difficult to study and diagnose, partly due to the lack of agreed diagnostic criteria. This systematic review aims to give an overview of the associations between clinical and imaging findings suggestive of spinal osteoarthritis in patients with low back pain to make a step towards agreed diagnostic criteria. DESIGN: We searched MEDLINE, Embase, Web of Science, and CINAHL from inception to April 29, 2021 to identify observational studies in adults that assessed the association between selected clinical and imaging findings suggestive of spinal osteoarthritis. Risk of bias was assessed using the Newcastle Ottawa Scale and the quality of evidence was graded using an adaptation of the GRADE approach. RESULTS: After screening 7902 studies, 30 met the inclusion criteria. High-quality evidence was found for the longitudinal association between low back pain (LBP) intensity, and both disc space narrowing and osteophytes, as well as for the association between LBP-related physical functioning and lumbar disc degeneration, the presence of spinal morning stiffness and disc space narrowing and for the lack of association between physical functioning and Schmorl's nodes. CONCLUSIONS: There is high- and moderate-quality evidence of associations between clinical and imaging findings suggestive of spinal osteoarthritis. However, the majority of the studied outcomes had low or very low-quality of evidence. Furthermore, clinical and methodological heterogeneity was a serious limitation, adding to the need and importance of agreed criteria for spinal osteoarthritis, which should be the scope of future research.

Pain and its interference with daily living in relation to cancer: a comparative population-based study of 16,053 cancer survivors and 106,345 people without cancer.

BACKGROUND: Pain is a common, debilitating, and feared symptom, including among cancer survivors. However, large-scale population-based evidence on pain and its impact in cancer survivors is limited. We quantified the prevalence of pain in community-dwelling people with and without cancer, and its relation to physical functioning, psychological distress, and quality of life (QoL). METHODS: Questionnaire data from participants in the 45 and Up Study (Wave 2, n = 122,398, 2012-2015, mean age = 60.8 years), an Australian population-based cohort study, were linked to cancer registration data to ascertain prior cancer diagnoses. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for bodily pain and pain sufficient to interfere with daily activities (high-impact pain) in people with versus without cancer, for 13 cancer types, overall and according to clinical, personal, and health characteristics. The relation of high-impact pain to physical and mental health outcomes was quantified in people with and without cancer. RESULTS: Overall, 34.9% (5,436/15,570) of cancer survivors and 31.3% (32,471/103,604) of participants without cancer reported bodily pain (PR = 1.07 [95% CI = 1.05-1.10]), and 15.9% (2,468/15,550) versus 13.1% (13,573/103,623), respectively, reported high-impact pain (PR = 1.13 [1.09-1.18]). Pain was greater with more recent cancer diagnosis, more advanced disease, and recent cancer treatment. High-impact pain varied by cancer type; compared to cancer-free participants, PRs were: 2.23 (1.71-2.90) for multiple myeloma; 1.87 (1.53-2.29) for lung cancer; 1.06 (0.98-1.16) for breast cancer; 1.05 (0.94-1.17) for colorectal cancer; 1.04 (0.96-1.13) for prostate cancer; and 1.02 (0.92-1.12) for melanoma. Regardless of cancer diagnosis, high-impact pain was strongly related to impaired physical functioning, psychological distress, and reduced QoL. CONCLUSIONS: Pain is common, interfering with daily life in around one-in-eight older community-dwelling participants. Pain was elevated overall in cancer survivors, particularly for certain cancer types, around diagnosis and treatment, and with advanced disease. However, pain was comparable to population levels for many common cancers, including breast, prostate and colorectal cancer, and melanoma.

The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study.

BACKGROUND: Comprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer. METHODS: HRQOL of 2154 children with cancer was longitudinally reported (median: 3 reports) between diagnosis and 5 years after, using the pediatric quality of life inventory generic core scales (PedsQL). HRQOL was modelled over time since diagnosis using mixed model analysis for children 2-7 years (caregiver-reports) and ≥ 8 years (self-reports). Differences in the course between hematological, solid and central nervous system malignancies were studied. Additional associations of demographics, disease characteristics (age at diagnosis, relapse, diagnosis after the national centralization of childhood cancer care and treatment components) and caregiver distress (Distress thermometer) were studied. RESULTS: Overall, HRQOL improved with time since diagnosis, mostly in the first years. The course of HRQOL differed between diagnostic groups. In children aged 2-7 years, children with a solid tumor had most favorable HRQOL. In children aged ≥ 8 years, those with a hematological malignancy had lower HRQOL around diagnosis, but stronger improvement over time than the other diagnostic groups. In both age-groups, the course of HRQOL of children with a CNS tumor showed little or no improvement. Small to moderate associations (ß: 0.18 to 0.67, p < 0.05) with disease characteristics were found. Centralized care related to better HRQOL (ß: 0.25 to 0.44, p < 0.05). Caregiver distress was most consistently associated with worse HRQOL (ß: - 0.13 to - 0.48, p < 0.01). CONCLUSIONS: The HRQOL course presented can aid in identifying children who have not fully recovered their HRQOL following cancer diagnosis, enabling early recognition of the issue. Future research should focus on ways to support children, especially those with a CNS tumor, for example by decreasing distress in their caregivers.

Long-term safety and efficacy of velmanase alfa treatment in children under 6 years of age with alpha-mannosidosis: A phase 2, open label, multicenter study.

Alpha-mannosidosis (AM) is a rare, autosomal recessive, lysosomal storage disorder caused by alpha-mannosidase deficiency that leads to the accumulation of mannose-rich oligosaccharides. AM symptoms and severity vary among individuals; consequently, AM is often not diagnosed until late childhood. Velmanase alfa (VA), a recombinant human lysosomal alpha-mannosidase product, is the first enzyme replacement therapy indicated to treat non-neurological symptoms of AM in Europe. Previous studies suggested that early VA treatment in children may produce greater clinical benefit over the disease course than starting treatment in adolescents or adults; however, long-term studies in children are limited, and very few studies include children under 6 years of age. The present phase 2, multicenter, open-label study evaluated the safety and efficacy of long-term VA treatment in children under 6 years of age with AM. Five children (three males) received VA weekly for ≥24 months, and all children completed the study. Four children experienced adverse drug reactions (16 events) and two experienced infusion-related reactions (12 events). Most (99.5%) adverse events were mild or moderate, and none caused study discontinuation. Four children developed antidrug antibodies (three were neutralizing). After VA treatment, all children improved in one or more efficacy assessments of serum oligosaccharide concentrations (decreases), hearing, immunological profile, and quality of life, suggesting a beneficial effect of early treatment. Although the small study size limits conclusions, these results suggest that long-term VA treatment has an acceptable safety profile, is well tolerated, and may provide potential benefits to patients with AM under 6 years of age.

Purpose in life and physical health in older U.S. military veterans: Cross-sectional results from the National Health and Resilience in Veterans Study.

General population studies suggest purpose in life (PIL) is associated with a number of positive outcomes, including better mental and physical health. At present, however, scarce research has examined how PIL relates to these outcomes in veterans. The goal of this study was to determine the current prevalence of different levels of PIL and their associations with reported physical health in a nationally representative sample of predominantly older U.S. veterans. Cross-sectional data were analyzed from the 2019-2020 National Health and Resilience in Veterans Study (N = 4069; M(age) = 62.2). Veterans were classified into low, average, and high PIL. Self-report assessments were administered to assess physical health conditions and physical functioning. Results showed most veterans endorsed average PIL (71.7%), while 16.0% endorsed low PIL and 12.3% endorsed high PIL. Low PIL was associated with lower overall self-reported health and physical and cognitive functioning, as well as higher bodily pain, somatic symptoms, and physical role limitations (Cohen's d = 0.06-0.77). Low PIL was also associated with elevated rates of several physical health conditions, including sleep disorders, as well as obesity and disability with activities of daily living (i.e., ADLs) or instrumental activities of daily living (i.e., IADLs). These results suggest low PIL is associated with physical health difficulties, and underscore the importance of assessing and monitoring PIL, and evaluating whether interventions to promote PIL may help improve physical health and vice versa.

Functional decline during the COVID-19 pandemic among U.S. military veterans: Results from the National Health and Resilience in Veterans Study.

OBJECTIVES: The coronavirus disease-2019 pandemic has contributed to widespread social and economic stressors, along with substantial health problems, including loss of life. To date, however, relatively few studies have examined the prevalence and correlates of declines in mental and physical functioning in U.S. military veterans, an older and potentially vulnerable segment of the U.S. adult population. METHODS: Data were analyzed from the 2019-2020 National Health and Resilience in Veterans Study, a nationally representative, longitudinal study of 3078 veterans. Veterans were surveyed prior to the pandemic (pre-pandemic) and 1 year later during the height of the pandemic (peri-pandemic). Multivariable analyses were conducted to identify risk and protective variables associated with pre-to-peri pandemic declines in self-reported physical and mental functioning. RESULTS: The prevalence of veterans who experienced functional decline (≥0.5 standard deviation reductions) pre-to-peri-pandemic was 18.1% (N = 541) for physical functioning and 18.3% (N = 547) for mental functioning. Older age, greater adverse childhood experiences (ACEs), and pandemic-related posttraumatic stress symptoms were the strongest correlates of physical functional decline, while greater ACEs, loneliness, pandemic-related posttraumatic and social restriction stress symptoms, and lower protective psychosocial characteristics were the strongest correlates of mental functional decline. CONCLUSIONS: Although the majority of U.S. Veterans showed functional maintenance or improvement 1 year into the pandemic, nearly one-in-five experienced a decline in physical or mental functioning. Results could help inform identification of veterans who may be at risk for functional decline during large-magnitude stressors, such as national or global pandemics.