Valued Life Activities Research Articles

Improvements in Patient-Reported Functioning after Lung Transplant is Associated with Improved Quality of Life and Survival.

Lung transplantation aims to improve health-related quality of life (HRQL) and survival. While lung function improvements are associated with these outcomes, the association between physical functioning and these outcomes is less clear. We investigated the association between changes in patient-reported physical functioning and HRQL, chronic lung allograft dysfunction (CLAD), and survival after lung transplantation. This single-center prospective cohort study analyzed 220 lung transplant recipients who completed the 15-item Lung Transplant Valued Life Activities (LT-VLA) before and repeatedly after transplant. HRQL was assessed using generic, respiratory disease-specific, and utility measures. Associations between 0.3-point changes (the minimally important difference) in LT-VLA as a time-varying predictor on HRQL, CLAD, and mortality were tested using linear regression and Cox proportional hazard models. Models were adjusted for demographics, disease diagnosis, and post-operative lung function as a time-varying covariate. Participants were 45% female and 75% White, with a mean age of 56 (±12) years. Each 0.3-point improvement in LT-VLA was associated with substantially improved HRQL across all measures (adjusted p-values <0.01). Each 0.3-point improvement in LT-VLA was associated with a 13% reduced hazard of CLAD (adjusted HR: 0.87, 95% CI: 0.76-0.99, p=0.03) and a 19% reduced hazard of mortality (adjusted HR: 0.81, 95% CI: 0.67-0.95, p=0.01). Improvements in patient-reported physical functioning after lung transplantation are associated with improved HRQL and reduced risk of CLAD and death, independent of allograft function. The simplicity of the LT-VLA suggests it could be a valuable monitoring or outcome measure in both clinical and research settings.

Capability After Total Knee Arthroplasty for Osteoarthritis Is Strongly Associated With Preoperative Symptoms of Depression.

Primary total knee arthroplasty (TKA) aims to improve the level of capability (ability to perform valued life activities) associated with knee osteoarthritis (OA). However, some evidence suggests a substantial proportion of patients remain dissatisfied with their outcomes after this procedure. We sought to better understand the association between mental health, specifically symptoms of depression, with postoperative outcomes. Symptoms of depression are shown to be common among orthopaedic populations in general and can be briefly and conveniently evaluated using the Patient Health Questionnaire-2 (PHQ-2) in a less burdensome manner compared with longer mental health surveys. This study assesses the association between preoperative depressive symptoms (PHQ-2) and levels of capability at 6 weeks and 6 months after TKA. We conducted a prospective cohort study involving 114 patients with knee OA across five clinics in California and Texas scheduled for TKA. Participants completed a preoperative PHQ-2 and Knee Injury and OA Outcome Score for Joint Replacement (KOOS JR) survey at 6 weeks and 6 months post-TKA. We analyzed these data using bivariate and multivariable regression. Preoperative PHQ-2 scores were significantly associated with lower KOOS JR scores at 6 weeks and 6 months post-TKA. Latino/Hispanic race was also associated with lower KOOS JR scores at 6 weeks. The association between preoperative depressive symptoms and level of capability after TKA were more pronounced at 6 months compared with 6 weeks. Preoperative symptoms of depression are strongly associated with reduced capability after TKA and can be screened for using the PHQ-2-a brief tool that can be feasibly incorporated into clinical workflows. User-friendly assessment of depressive symptoms can assist orthopaedic surgeons in identifying and addressing mental health at the outset during the management of knee OA.

Characterizing Interventions Used to Promote Life Participation in Adults on Peritoneal Dialysis Therapy: A Scoping Review.

Living with kidney failure can interfere with life participation (ie, participation in valued life activities). Life participation has recently been identified as a top-priority health outcome of people on peritoneal dialysis therapy, but it is a relatively unexplored topic in peritoneal dialysis. The objective is to describe the interventions that have been used to promote life participation in the peritoneal dialysis population and highlight research gaps warranting further investigation. A scoping review was conducted according to the Joanna Briggs Institute methodology. Six electronic databases (MEDLINE [OVID], EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, CINAHL Plus, SCOPUS) were searched. Adults aged 18+ years on peritoneal dialysis therapy. Any dedicated scale or subscale that measured life participation as an isolated outcome. Title/abstract screening was completed independently after adequate inter-rater reliability (kappa > 0.8) was achieved among reviewers. Full-text review and data extraction were conducted in duplicate. Extracted data were analyzed using counts, percentages, and narrative synthesis to describe patterns in the literature. After identifying 13 874 results, 17 studies met eligibility criteria. Eight studies were conducted within the past 5 years, with China as the most common study location. Only 2 studies investigated life participation as a primary study outcome. Eight studies targeted personal-physical barriers to life participation, 8 targeted multiple barriers, and 1 targeted an environmental-institutional barrier. Life participation was assessed within a subdomain of a broader quality of life assessment (The Kidney Disease Quality of Life [KDQOL]-36 or the 36-Item Short-Form Health Survey [SF-36]) in 11 studies. The majority of assessments captured life participation in all major domains of participation (self-care, work, and leisure). Eligibility screening at title/abstract stage was not performed in duplicate; articles not available in English were excluded. Life participation has infrequently been prioritized as a health outcome in peritoneal dialysis (PD). Interventions have been narrow in focus given the range of challenges faced by people on PD and the holistic approaches used in other clinical populations. Future research should prioritize life participation as a key health outcome in PD and investigate the impact of interventions that address cognitive, affective, and environmental barriers to participation.

"It's Incapacitated Me in so Many Ways": Older Adults' Lived Experience With Postoperative Symptoms at Home After Major Elective Surgery.

This qualitative study aimed to explore the challenges faced by older adults regarding the postoperative symptom experience after major elective surgery. Although extensively studied in oncology settings, the impact of postoperative symptom burden remains largely underexplored in elective major surgery among older adults. We employed convenience sampling to recruit adults aged 65 years or above undergoing major elective surgery at the University of California, San Francisco. Semistructured interviews regarding the surgical experience were conducted at 1 and 3 months postoperatively. An inductive qualitative approach was used to identify emerging themes. Symptoms revealed by participants during interviews were also captured. Nineteen participants completed a 1-month postoperative interview, and 17 additionally completed a 3-month interview. Three themes emerged: (1) postoperative symptoms significantly impacted valued life activities and psychosocial well-being, (2) participants felt "caught off guard" by the intensity and duration of postoperative symptoms, and (3) participants expressed the need for additional support, resources, and education on symptom management. The most frequently mentioned symptoms were postoperative pain (n=12, 63.1%), gastrointestinal discomfort (n=8, 42.1%), and anxiety/stress (n=8, 42.1%) at 1-month postsurgery compared with pain and depression (both n=6, 35.3%) at 3 months. Study participants were surprised by the negative impact of postoperative symptoms on their psychosocial well-being and ability to engage in valued life activities. Symptom burden is an important patient-reported outcome that should be assessed postoperatively. Interventions to minimize postoperative symptom burden in older adults could optimize quality of life and participation in meaningful activities during surgical recovery.

Comparison of two frailty definitions in women with systemic lupus erythematosus.

Frailty is a risk factor for adverse health in SLE. The Fried phenotype (FP) and the SLICC Frailty Index (SLICC-FI) are common frailty metrics reflecting distinct approaches to frailty assessment. We aimed to (1) compare frailty prevalence according to both metrics in women with SLE and describe differences between frail and non-frail participants using each method and (2) evaluate for cross-sectional associations between each metric and self-reported disability. Women aged 18-70 years with SLE were enrolled. FP and SLICC-FI were measured, and agreement calculated using a kappa statistic. Physician-reported disease activity and damage, Patient Reported Outcome Measurement Information System (PROMIS) computerized adaptive tests, and Valued Life Activities (VLA) self-reported disability were assessed. Differences between frail and non-frail participants were evaluated cross-sectionally, and the association of frailty with disability was determined for both metrics. Of 67 participants, 17.9% (FP) and 26.9% (SLICC-FI) were frail according to each metric (kappa = 0.41, P < 0.01). Compared with non-frail women, frail women had greater disease damage, worse PROMIS scores, and greater disability (all P < 0.01 for FP and SLICC-FI). After age adjustment, frailty remained associated with a greater odds of disability [FP: odds ratio (OR) 4.7, 95% CI 1.2, 18.8; SLICC-FI: OR 4.6, 95% CI 1.3, 15.8]. Frailty is present in 17.9-26.9% of women with SLE. These metrics identified a similar, but non-identical group of women as frail. Further studies are needed to explore which metric is most informative in this population.

Strategies used by people with systemic sclerosis to perform valued occupations

Introduction: This study explored the strategies used by people with systemic sclerosis to perform valued obligatory (self-care), committed (home management, care of others, productivity), and discretionary (leisure and socialization) activities. Method: This cross-sectional study included a convenience sample of 92 people with systemic sclerosis who completed the Valued Life Activities Scale (VLA). The VLA categorizes activities into three main domains: obligatory, committed, and discretionary. Participants indicated the type of adaptive strategy used for each activity (assistive devices, personal assistance, limited frequency, and taking more time). Participants also completed a demographic questionnaire and measures of pain, fatigue, depression, and daily activity performance. Frequency counts were calculated for strategies used for each activity. One-way analyses of variance compared the mean use of strategies across the three domains (obligatory, committed, and discretionary). Pearson correlation coefficients calculated relationships between strategy use and pain, fatigue, depression, and daily activity performance. Results: Significantly, more strategies were used for committed activities compared to obligatory activities. Limiting the frequency of performing an activity was used significantly more for committed and discretionary activities than for obligatory activities. The least used strategies were assistive devices and assistance from another person. Fatigue and depression were related to strategy use, whereas pain and daily activity performance were not. Conclusion: People with systemic sclerosis use adaptive strategies to perform VLA. However, the strategies, most frequently used, such as taking more time or limiting the frequency of performing some activities, may result in relinquishing other valued activities.

Association of Baseline Frailty with Patient-Reported Outcomes in Systemic Lupus Erythematosus at 1 Year.

The relationship of baseline frailty with subsequent patient-reported outcomes in systemic lupus erythematosus (SLE) remains unclear. We assessed these associations in a pilot prospective cohort study. Frailty based on the FRAIL scale and the Fried phenotype and patient-reported outcomes, namely Patient Reported Outcomes Measurement Information System computerized adaptive tests and Valued Life Activities disability, were measured at baseline and 1 year among women aged 18-70 years with SLE enrolled at a single center. Differences in Patient Reported Outcomes Measurement Information System computerized adaptive tests between frail and non-frail participants were evaluated using Wilcoxon rank sum tests, and the association of baseline frailty with self-report disability at 1 year was estimated using linear regression. Of 51 participants, 24% (FRAIL scale) and 16% (Fried phenotype) met criteria for frailty at baseline despite median age of 55.0 and 56.0 years, respectively. Women with (versus without) baseline frailty using either measure had worse 1-year Patient Reported Outcomes Measurement Information System computerized adaptive test scores across multiple domains and greater self-report disability. Baseline frailty was significantly associated with self-report disability at 1 year (FRAIL scale: parameter estimate 0.55, 95% confidence interval (CI) 0.21-0.89, p<0.01; Fried phenotype: parameter estimate 0.61, 95% CI 0.22-1.00, p<0.01), including only slight attenuation after adjustment for SLE cumulative organ damage (FRAIL scale: parameter estimate 0.45, 95% CI 0.09-0.81, p=0.02; Fried phenotype: parameter estimate 0.49, 95% CI 0.09-0.90, p=0.02). These preliminary findings support frailty as an independent risk factor for clinically relevant patient-reported outcomes, including disability onset, among women with SLE.

Persistent hand pain despite adequate immunosuppression? The distinct value of occupational therapy in the era of biologics.

Despite the tremendous advancement in the use of biologics, many patients with inflammatory arthritis do not achieve remission, and the risk of joint damage remains high. A multidimensional approach to treatment is essential. Joint disease in the hands and wrists may prevent patients from performing daily and valued life activities. This review will discuss the role of occupational therapists in inflammatory arthritis, recent updates on joint protection and assistive devices, as well as highlighting adjunctive treatment options for rheumatologists to help patients manage their symptoms. This article describes the meaningful role of occupational therapy and assistive devices in improving the outcomes for patients with inflammatory arthritis. We describe orthoses, assistive devices and adjunctive therapies utilized in inflammatory arthritis. We provide evidence supporting joint protection and occupational therapy as ways to help with these diseases. A multidisciplinary approach including the entire healthcare provider team, including occupational therapists, is essential to providing individualized treatment focusing on maximizing mobility in each patient's daily routine. Although larger studies are needed, assessment by hand-certified occupational therapists for instruction in joint protection techniques, assistive devices and customized orthoses and devices are important adjuncts to pharmacologic management in inflammatory arthritis.

When Functional Impairment Develops Early: Perspectives from Middle-Aged Adults.

Difficulty performing basic daily activities such as bathing and dressing ("functional impairment") affects more than 15% of middle-aged people, and this proportion is increasing. Little is known about the experiences and needs of individuals who develop functional impairment in middle age. To examine the experiences and needs of adults who developed functional impairment in middle age. Qualitative study using semi-structured interviews. Forty patients aged 50-64 years who developed functional impairment in middle age, recruited from four primary care clinics in San Francisco. Interviews included open-ended questions about participants' daily life, ability to perform activities of daily living (ADLs), and needs related to functional impairment. We analyzed interviews using qualitative thematic analysis. Interviews revealed several themes related to the psychosocial and physical impacts of developing functional impairment in middle age. Participants noted that losses associated with functional impairment, such as loss of independence, control, and social roles, caused conflict in their sense of identity. To cope with these losses, participants used strategies including acceptance, social comparison, adjusting standards, and engaging in valued life activities. Participants reflected on the intersection of their functional impairment with the aging process, noting that their impairments seemed premature compared to the more "natural" aging process in older adults. In terms of physical impacts, participants described how a lack of accommodations in the built environment exacerbated their impairments. While participants used behavioral strategies to overcome these challenges, unmet needs remained, resulting in downstream physical and psychological impacts including safety risks, falls, frustration, and fear. Unmet psychosocial and physical needs were common among middle-aged adults with functional impairment and led to negative downstream effects. Eliciting and addressing unmet needs may help mitigate downstream health consequences for this growing population, optimizing function and quality of life.

Molecular Phenotypes of Frailty in Lung Transplant Candidates

<h3>Purpose</h3> The potential for heterogenous pathobiology underlying physical frailty might explain the inconsistent associations observed between frailty and poor outcomes in lung transplantation. We hypothesize that molecular phenotyping could refine frailty measurement and ultimately tailor interventions. <h3>Methods</h3> In a three-center cohort of lung transplant candidates, we measured frailty by the Short Physical Performance Battery (SPPB); demographic and clinical variables; body composition by bioelectrical impedance, and 17 serum biomarkers reflecting commonly cited causes of frailty including inflammation, sarcopenia, adiposity, mitochondrial and neurohormonal dysfunction. Among those pre-frail or frail (SPPB <12), we first applied latent class modelling to the baseline data and then followed participants forward in time. The best-fitting model was determined by the Bayesian Information Criteria and the Vuong-Lo-Mendell-Rubin test. We tested predictive validity of these classes with disability by the Lung Transplant Valued Life Activities scale and by candidate delisting for becoming too ill or death. <h3>Results</h3> In 442 participants, a 3 latent class model best fit (p = 0.046; Figure 1A). Type A was characterized by higher serum biomarkers of inflammation and sarcopenia (lower muscle mass [ASMI] and grip strength); Type B by sarcopenia, high adiposity (VFA), and lack of inflammation, and Type C was relatively fit (higher ASMI and grip strength) and without inflammation (Figure 1B). Amongst the Type A endotype, 13% of participants died or were delisted compared to 6% in both Type B and C (p = 0.15). Participants comprising Type A reported worse disability (LT-VLA 1.7) than Types B and C (1.4 and 1.3, respectively) (p < 0.001) and had shorter time to delisting or death (1.4 vs 8.0 and 4.0 months, respectively) (p < 0.001). <h3>Conclusion</h3> We identified distinct biological phenotypes of frailty. A frailty phenotype characterized by systemic inflammation and sarcopenia appears to be associated with worse clinical outcomes.

Hope for "Continued Vitality": Qualitative Study of Adults With Traumatic Brain Injury and Low Mood on Their Rehabilitation.

ObjectiveDepression is highly comorbid with traumatic brain injury (TBI) with often complex and interacting symptomology that contributes to the experience of disability. Comorbid depression results in poorer TBI rehabilitation and downstream participation outcomes yet perspectives of this group regarding person-centered care is unknown.PurposeThis study aimed to explicate the perspectives of persons with TBI and depression on their values, preferences, and desired outcomes for optimal rehabilitation.MethodsA qualitative descriptive approach was taken. Thirteen adults [mean age: 40.5 (standard deviation 9.8)] diagnosed with TBI and with self-reported low mood were recruited through convenience sampling. Participants were predominantly female (n = 12) with concussion/mild TBI and at least 6 months post-injury. One-on-one, semi-structured interviews were conducted by phone with Canadian participants (March-May 2020). Interviews were transcribed; data were analyzed thematically by two researchers and the thematic map refined by the research team.ResultsThree themes were identified on values, preferences, and desired outcomes in person-centered care. Participants valued “validation” from healthcare providers and the health system to feel seen and believed about their conditions and concerns. They preferred for healthcare providers to “share the burden of managing care” through improved interactions and better access to concussion care. Participants expressed that “meaningful outcomes” were to be symptom free, to resume valued life activities, and to be able to adapt/be resilient. The latter indicated hope for “continued vitality” for life participation despite past and ongoing challenges.ConclusionsMany adults with TBI and self-identified low mood expressed rehabilitation experiences that were invalidating. Their identified values, preferences, and desired outcomes provide directions for better person-centered care by healthcare providers and health systems to support participation.

Importance and difficulty with valued life activities for people with systemic sclerosis

Purpose To identify the importance of and difficulty with valued activities in persons with systemic sclerosis (SSc) and to examine relationships between disease symptoms and difficulty with valued activities using the Valued Activities Scale (VLA). A secondary purpose was to examine the internal consistency of the Short-VLA Scale (S-VLA). Methods A cross-sectional convenience sample of 99 people with SSc completed questionnaires regarding demographics, symptom severity, Health Assessment Questionnaire (HAQ), Center for Epidemiologic Studies Depression Scale (CES-D), and the VLA. Results Obligatory activities were rated as most important; committed activities were significantly more difficult than obligatory and discretionary. Less fatigue (p < 0.01) and lower HAQ (p < 0.001) and CES-D (p < 0.01) scores were associated with higher total VLA scores. Internal consistency of the S-VLA was excellent (Cronbach’s alpha = 0.92; p < 0.0001). The correlation between the S-VLA and the VLA was excellent (r = 0.96; p < 0.001). There were moderate correlations between the S-VLA and the HAQ (r = 0.73; p < 0.0001); the correlation with the CES-D was only fair (r = 0.35; p < 0.001). Conclusions Committed and discretionary activities were more difficult for people with SSc to perform. Results are similar to findings with people with rheumatoid arthritis and systemic lupus erythematosus. IMPLICATIONS FOR REHABILITATION Home management/caregiving (committed) and leisure and social participation (discretionary) activities are more difficult to perform by people with SSc compared to self-care (obligatory) activities. Our findings that difficulty scores on the VLA were associated with more fatigue and depression suggest the need for rehabilitation to reduce disability in people with SSc. The S-VLA may be a useful screening and monitoring tool for SSc and other chronic conditions.

Association of Social Isolation With Disability Burden and 1-Year Mortality Among Older Adults With Critical Illness

Disability and mortality are common among older adults with critical illness. Older adults who are socially isolated may be more vulnerable to adverse outcomes for various reasons, including fewer supports to access services needed for optimal recovery; however, whether social isolation is associated with post-intensive care unit (ICU) disability and mortality is not known. To evaluate whether social isolation is associated with disability and with 1-year mortality after critical illness. This observational cohort study included community-dwelling older adults who participated in the National Health and Aging Trends Study (NHATS) from May 2011 through November 2018. Hospitalization data were collected through 2017 and interview data through 2018. Data analysis was conducted from February 2020 through February 2021. The mortality sample included 997 ICU admissions of 1 day or longer, which represented 5 705 675 survey-weighted ICU hospitalizations. Of these, 648 ICU stays, representing 3 821 611 ICU hospitalizations, were eligible for the primary outcome of post-ICU disability. Social isolation from the NHATS survey response in the year most closely preceding ICU admission, which was assessed using a validated measure of social connectedness with partners, families, and friends as well as participation in valued life activities (range 0-6; higher scores indicate more isolation). The primary outcome was the count of disability assessed during the first interview following hospital discharge. The secondary outcome was time to death within 1 year of hospital admission. A total of 997 participants were in the mortality cohort (511 women [51%]; 45 Hispanic [5%], 682 non-Hispanic White [69%], and 228 non-Hispanic Black individuals [23%]) and 648 in the disability cohort (331 women [51%]; 29 Hispanic [5%], 457 non-Hispanic White [71%], and 134 non-Hispanic Black individuals [21%]). The median (interquartile range [IQR]) age was 81 (75.5-86.0) years (range, 66-102 years), the median (IQR) preadmission disability count was 0 (0-1), and the median (IQR) social isolation score was 3 (2-4). After adjustment for demographic characteristics and illness severity, each 1-point increase in the social isolation score (from 0-6) was associated with a 7% greater disability count (adjusted rate ratio, 1.07; 95% CI, 1.01-1.15) and a 14% increase in 1-year mortality risk (adjusted hazard ratio, 1.14; 95% CI, 1.03-1.25). In this cohort study, social isolation before an ICU hospitalization was associated with greater disability burden and higher mortality in the year following critical illness. The study findings suggest a need to develop social isolation screening and intervention frameworks for older adults with critical illness.

Evaluation of a Patient-reported Frailty Tool in Women With Systemic Lupus Erythematosus.

Frailty is associated with mortality in systemic lupus erythematosus (SLE), but how best to measure frailty is unclear. We aimed to compare 2 frailty metrics, the self-reported Fatigue, Resistance, Ambulation, Illnesses, and Loss of weight (FRAIL) scale (FS) and the Fried phenotype (FP), in SLE to evaluate differences between frail and nonfrail women and whether frailty is associated with self-reported disability. Adult women aged < 70 years with validated SLE and mild/moderate disease enrolled in this cross-sectional study between August 2018 and October 2019. Correlation and agreement between the FS and the FP were determined. Differences in sociodemographic and disease characteristics, patient-reported outcome measures (PROMs), and biomarkers between frail and nonfrail participants were evaluated, as well as the association of frailty with Valued Life Activities disability. Of 67 participants, 27% and 18% were frail according to the FS and the FP, respectively. Correlation (r = 0.51; P < 0.0001) and agreement (κ = 0.46; P = 0.0004) between the FS and the FP were significant. Frail women had greater disease damage, high-sensitivity C-reactive protein, and interleukin 6, and worse PROMs according to both frailty definitions. Both frailty measures were associated with self-reported disability after adjustment for age, comorbidity, and disease activity and damage; this relationship was attenuated for the FP. Frailty prevalence was high in this cohort of women with SLE using both frailty definitions, suggesting that frailty may be accelerated in women with SLE, particularly when based exclusively on self-report. Frailty remained associated with self-reported disability in adjusted analyses. The FS may be an informative point-of-care tool to identify frail women with SLE.

Participation and Psychological Capital in Adults With Parkinson's Disease: Mediation Analysis Based on the International Classification of Functioning, Disability, and Health

ObjectiveThe purpose of this study was to explore how the functional impact of Parkinson's disease affects participation and to evaluate whether positive psychological capital (PsyCap) mediates the relationship within the context of the World Health Organization International Classification of Functioning, Disability, and Health Model.MethodSurvey responses were analyzed from 144 adults with Parkinson's disease using a quantitative, correlational research design employing multiple regression and hierarchical regression analysis to examine hypothesized relationships.ResultsThe results of the correlation analysis indicated that there was a statistically significant, moderate-to-strong positive correlation between functioning and PsyCap and participation. Hierarchical regression analysis revealed that functioning accounted for 65% of the variance in participation. Although PsyCap was associated with participation, no mediating effect was observed.ConclusionsThe results are consistent with traditional clinical judgment that physical functioning is positively correlated with participation. This study represents the first evaluation of the role of PsyCap in people with Parkinson's disease, and the results of the correlational analysis suggest that continued investigation of these relationships is warranted.BackgroundParkinson's disease results in a variety of motor and non-motor features that frequently result in reduced participation in valued life activities.

Pearls: How (and Why) to Use Participatory Language When Communicating with Patients About Osteoarthritis.

Pearls: How (and Why) to Use Participatory Language When Communicating with Patients About Osteoarthritis.

Construct and Predictive Validity of Sarcopenia in Lung Transplant Candidates.

Rationale: Sarcopenia is associated with disability and death. The optimal definition and clinical relevance of sarcopenia in lung transplantation remain unknown. Objectives: To assess the construct and predictive validity of sarcopenia definitions in lung transplant candidates. Methods: In a multicenter prospective cohort of 424 lung transplant candidates, we evaluated limited (muscle mass only) and expanded (muscle mass and quality) sarcopenia definitions from the European Working Group on Sarcopenia in Older People 2 (EWGSOP2), the Foundation for the National Institutes of Health (FNIH), and a cohort-specific distribution-based lowest quartile definition. We assessed construct validity using associations with conceptually related factors. We evaluated the relationship between sarcopenia and frailty using generalized additive models. We also evaluated associations between sarcopenia definitions and key pretransplant outcomes, including disability (quantified by the Lung Transplant Valued Life Activities scale [range, 0-3; higher scores = worse disability; minimally important difference, 0.3]) and waitlist delisting/death, by multivariate linear and Cox regression, respectively. Results: Sarcopenia prevalence ranged from 6% to13% by definition used. The limited EWGSOP2 definition demonstrated the highest construct validity, followed by the expanded EWGSOP2 definition and both limited and expanded FNIH and lowest quartile definitions. Sarcopenia exhibited a linear association with the risk of frailty. The EWGSOP2 and expanded lowest quartile definitions were associated with disability, ranging from 0.20 to 0.25 higher Lung Transplant Valued Life Activities scores. Sarcopenia was associated with increased risk of waitlist delisting or death by the limited and expanded lowest quartile definitions (hazard ratio [HR], 3.8; 95% confidence interval [CI], 1.4-9.9 and HR, 3.5; 95% CI, 1.1-11.0, respectively) and the EWGSOP2 limited definition (HR, 2.8; 95% CI, 0.9-8.6) but not with the three other candidate definitions. Conclusions: The prevalence and validity of sarcopenia vary by definition; the EWGSOP2 limited definition exhibited the broadest validity in lung transplant candidates. The linear relationship between low muscle mass and frailty highlights sarcopenia's contribution to frailty and also questions the clinical utility of a sarcopenia cut-point in advanced lung disease. The associations between sarcopenia and important pretransplant outcomes support further investigation into using body composition for candidate risk stratification.

Measures of Participation in Persons With Musculoskeletal Conditions.

Measures of Participation in Persons With Musculoskeletal Conditions.

The Valued Life Activities Scale (VLAs): linguistic validation, cultural adaptation and psychometric testing in people with rheumatic and musculoskeletal diseases in the UK

BackgroundThe Valued Life Activities Scale (VLAs) measures difficulty in daily activities and social participation. With various versions involving a different number of items, we have linguistically and culturally adopted the full VLAs (33-items) and psychometrically tested it in adults with rheumatic and musculoskeletal diseases in the United Kingdom.MethodsParticipants with Rheumatoid Arthritis, Ankylosing Spondylitis, Chronic Pain/ Fibromyalgia, Chronic Hand/ Upper Limb Conditions, Osteoarthritis, Systemic Lupus, Systemic Sclerosis and Primary Sjogren’s Syndrome were recruited from out-patient clinics in National Health Service Hospitals, General Practice and patient organisations in the UK. Phase1 involved linguistic and cultural adaptation: forward translation to British English; synthesis; expert panel review and cognitive debriefing interviews. In Phase2 participants completed postal questionnaires to assess internal construct validity using (i) Confirmatory Factor Analysis (CFA) (ii) Mokken scaling and (iii) Rasch model.ResultsResponders (n = 1544) had mean age of 59 years (SD13.3) and 77.2% women. A CFA failed to support a total score from the 33-items (Chi Square 3552:df 464: p < 0.0001). Mokken scaling indicated a strong non-parametric association between items. Fit to the Rasch model indicated that the VLAs was characterised by multidimensionality and item misfit, which may have been influenced by clusters of residual item correlations. An item banking approach resolved a 25-item calibrated set whose application could accommodate the ‘does not apply to me’ response option.ConclusionsThe UK version of the VLAs failed to satisfy classical and modern psychometric standards for complete item sets. However, as the scale is not usually applied in complete format, an item bank approach calibrated 25 items with fit to the Rasch model. Suitable Computer Adaptive Testing (CAT) software could implement the item set, giving patients the choice of whether an item applies to them, or not.

Improvements in frailty contribute to substantial improvements in quality of life after lung transplantation in patients with cystic fibrosis.

While lung transplantation (LTx) improves health-related quality of life (HRQL) in cystic fibrosis (CF), the determinants of this improvement are unknown. In other populations, frailty-a syndrome of vulnerability to physiologic stressors-is associated with disability and poor HRQL. We hypothesized that improvements in frailty would be associated with improved disability and HRQL in adults with CF undergoing LTx. In a single-center prospective cohort study from 2010 to 2017, assessments of frailty, disability, and HRQL were performed before and at 3- and 6-months after LTx. We assessed frailty by the short physical performance battery (SPPB). We assessed disability with the Lung Transplant Valued Life Activities scale (LT-VLA) and HRQL by the Medical Outcomes Study Short Form Physical and Mental Component Summary scales (SF12-PCS, -MCS), the Airway Questionnaire 20-Revised (AQ20R), and the Euroqol 5D (EQ5D). We tested the association of concurrent changes in frailty and lung function on disability and HRQL by linear mixed-effects models adjusted for sex and body mass index. Among 23 participants with CF, improvements in frailty and lung function were independently associated with improved disability and some HRQL measures. For example, each 1-point improvement in SPPB or 200 mL improvement in FEV1 was associated with improved LT-VLA disability by 0.14 (95%CI: 0.08-0.20) and 0.07 (95%CI: 0.05-0.09) points and improved EQ5D by 0.05 (95%CI: 0.03 to 0.07) and 0.02 (95%CI: 0.01-0.03) points, respectively. Improvement in frailty is a novel determinant of improved disability and HRQL in adults with CF undergoing LTx.