Self-reported Limitations In Activities Research Articles

Exploring Perceived Limitations to Daily Activities Due to Chronic Conditions: A Person-Centered Approach to Measuring Multimorbidity Severity.

Person-centered approaches to measuring severity of multimorbidity (≥ 2 chronic conditions) can help clinicians assess the individual experience of multimorbidity and inform effective caregiving and intervention strategies. We examine how limitations in everyday activities attributable to specific chronic conditions act independently and in tandem to influence individual perceptions of multimorbidity severity. Data from the Panel Study of Income Dynamics (2005-2021) were used to investigate self-reported limitations in normal daily activities resulting from nine chronic conditions (hypertension, arthritis, diabetes, heart condition [heart disease/heart attack], cancer, lung disease, stroke, depression, and memory loss) in 4,318 adults aged 55-95 (18,878 person-wave observations). We used descriptive and inferential analyses to estimate limitations resulting from specific conditions, limitations attributable to condition combinations, and the contribution of comorbid conditions to condition-specific and overall severity. Follow-up analyses addressed mortality selection using inverse probability weighting (IPW) and examined cancer type and cancer status/treatment modality among respondents reporting cancer diagnosis. Of the more prevalent conditions, arthritis was associated with the most severe limitations to normal activities. Memory loss was the least frequent condition reported, but resulted in the most severe limitations, and as a comorbid condition, increased limitations reported for most conditions. IPW adjusted models revealed heterogeneity in estimates for some conditions including cancer and cancer survivors tended to report less lethal cancers that were cured or in remission. Our results suggest that efforts to prevent and treat arthritis and support cognitive function may reduce the severity of multimorbidity experienced by the individual.

NETWORK ANALYSIS OF OBJECTIVE AND SUBJECTIVE INDICATORS OF SOCIAL ISOLATION AND FUNCTIONAL LIMITATIONS

Abstract Functional limitations, including decreased physical performance and increased limitations in daily activities, are common among older adults and associated with both objective and subjective social isolation. However, the dynamic interactions between and within different indicators of functional limitations and social isolation are unclear. This study employed network analysis to graphically depict and explore the relationships between various objective and subjective indicators of functional limitations and social isolation. Data came from the 2014/2016 waves of the Health and Retirement Study (n=9,076, mean age =67.25,52.32% female, 80.17% non-Hispanic White). Functional limitations were measured by objective physical performance (grip strength, tandem balance test) and self-reported limitations in daily activities. Objective social isolation was based on marital status, living arrangement, and network composition (children, other family members, and friends); subjective social isolation was indicated by the UCLA loneliness scale. Separate networks were constructed for men and women. Centrality indices, including strength, betweenness centrality, and eigenvector centrality, were computed to quantify the influence of each item. Subjective functioning and isolation items were strongly correlated but had weaker interconnections with one another. Strength and eigenvector centrality indicated that subjective functioning items had high degrees of influential interactions. Subjective social isolation items had high values of betweenness centrality, suggesting important bridging roles of these constructs. Subjective social isolation items had a more influential role in the network of women than men. Findings suggest opportunities for interdisciplinary interventions to address the multifactorial relationship between functional limitations and social isolation among older adults.

The efficacy of a blended intervention to improve physical activity and protein intake for optimal physical recovery after oncological gastrointestinal and lung cancer surgery, the Optimal Physical Recovery After Hospitalization (OPRAH) trial: study protocol for a randomized controlled multicenter trial

BackgroundImproving physical activity, especially in combination with optimizing protein intake, after surgery has a potential positive effect on recovery of physical functioning in patients after gastrointestinal and lung cancer surgery. The aim of this randomized controlled trial is to evaluate the efficacy of a blended intervention to improve physical activity and protein intake after hospital discharge on recovery of physical functioning in these patients.MethodsIn this multicenter single-blinded randomized controlled trial, 161 adult patients scheduled for elective gastrointestinal or lung cancer surgery will be randomly assigned to the intervention or control group. The purpose of the Optimal Physical Recovery After Hospitalization (OPRAH) intervention is to encourage self-management of patients in their functional recovery, by using a smartphone application and corresponding accelerometer in combination with coaching by a physiotherapist and dietician during three months after hospital discharge. Study outcomes will be measured prior to surgery (baseline) and one, four, eight, and twelve weeks and six months after hospital discharge. The primary outcome is recovery in physical functioning six months after surgery, and the most important secondary outcome is physical activity. Other outcomes include lean body mass, muscle mass, protein intake, symptoms, physical performance, self-reported limitations in activities and participation, self-efficacy, hospital readmissions and adverse events.DiscussionThe results of this study will demonstrate whether a blended intervention to support patients increasing their level of physical activity and protein intake after hospital discharge improves recovery in physical functioning in patients after gastrointestinal and lung cancer surgery.Trial registrationThe trial has been registered at the International Clinical Trials Registry Platform at 14–10-2021 with registration number NL9793. Trial registration data are presented in Table 1.

Chronic inflammatory neuropathies and their impact on activities and participation.

Chronic inflammatory demyelinating polyneuropathy (CIDP) and multifocal motor neuropathy (MMN) are inflammatory neuropathies that can lead to considerable limitations in daily activities and in social participation. However, systematic evaluation of these self-reported limitations is lacking in the currently available studies. Understanding the impact of these diagnoses on patients' life is important to optimize management strategies. To systematically assess the self-reported limitations in activities and participation and determine associated factors. A survey study was conducted in 2021 in a cohort of patients with CIDP (n = 257) and MMN (n = 148) from a university hospital. The survey included the Rasch-built Overall Disability Scale and the Utrecht Scale for Evaluation of Rehabilitation-Participation, questions addressing personal and disease-related factors and treatment. Multivariate linear regression analysis was used to determine associations with disease-related and personal factors. A total of 147 CIDP and 103 MMN patients responded. Limitations in activities were reported by 70.7% CIDP and 52.2% MMN patients with moderate to severe limitations in 22.4% and 5.9% patients, respectively. Participation restrictions were reported by 50% of CIDP and 40% of MMN patients, nevertheless satisfaction with participation was high. Fatigue, pain and resilience were independently associated with limitations in activities and satisfaction with participation in CIDP patients. Activity limitations and restrictions in participation are common in CIDP patients and to a lesser extent in MMN patients. Fatigue, pain and resilience independently contributed to perceived limitations in CIDP patients. Referral to a rehabilitation physician is warranted to address these limitations appropriately.

PCR95 Functional Quality of Life Among People Living With Obesity: A Longitudinal Cohort of Patient Reported Outcomes

Obesity is a chronic disease associated with decreased physical functioning and poor psychosocial health. We evaluated self-reported limitations in daily activities and quality of life (QOL) across BMI categories among people with obesity participating in a longitudinal observational survey.

Validation of the pedHALshort and HALshort in Dutch children and adults with haemophilia.

The Haemophilia Activities List (HAL) and paediatric HAL assess self-reported limitations in various daily activities. To reduce patient burden, shorter versions of the pedHAL (22 items) and HAL (18 items) have been developed. This study aimed to determine the agreement between the pedHAL/HALfull and pedHAL/HALshort and construct validity and internal consistency of the pedHAL/ HALshort in persons with haemophilia (PWH). A cross-sectional secondary analysis of the Hemophilia in the Netherlands-6 national survey was performed. Adult and paediatric PWH completed the original pedHAL/HALfull , from which pedHAL/ HALshort were derived. Score differences between the original and short versions were calculated. Construct validity was studied by testing hypotheses regarding the relationship of the pedHAL/HALshort with the pedHAL/HALfull , Haemophilia & Exercise Project Test-Questionnaire (HEP-Test-Q), Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) and RAND 36-item Health Survey (RAND-36) (convergent/discriminant validity) as well as its ability to discriminate between subgroups (known-group validity). Internal consistency was assessed with Cronbach's α. We included 113 children (median 10y [range 4-17], 53% severe haemophilia) and 691 adults (median 51y [range 18-88], 35% severe). Scores of the pedHAL/HALfull and pedHAL/HALshort were similar with high correlations (>0.9). Construct validity was confirmed for the pedHAL/HALshort . The HALshort was able to discriminate between different disease severities and ages. Cronbach's α of the pedHAL/HALshort was 0.95-0.97. This study confirmed the agreement between the pedHAL/HALfull and the pedHAL/HALshort and the construct validity of the pedHAL/HALshort . The next step is to study construct validity of the pedHAL/HALshort when administered as short forms.

Financial social protection and individual out-of-pocket costs of long-term care in the USA and Europe: An observational study.

SummaryBackgroundEmpirical evidence informing policies aiming at ensuring affordability of long-term care (LTC) costs is limited. Combining system-level with individual-level data, we quantify the burden of out-of-pocket costs of LTC services on households in 13 European countries and the USA and explore how social protection systems impact affordability of care.MethodsIn this observational study, we use harmonised data from the Health and Retirement Study (HRS), collected between 2012 and 2016, and from the Survey of Health, Ageing and Retirement in Europe, collected between 2013 and 2017. We assess the severity of LTC needs of older adults (65+) on the basis of self-reported limitations in activities of daily living (ADLs) and instrumental activities of daily living (IADLs). We classify countries' social protection systems in terms of affordability and progressivity using information obtained from country officials. We examine variation in individual-level out-of-pocket LTC costs by social protection systems' affordability and progressivity.FindingsOut-of-pocket LTC costs are heterogeneous across countries and increase with individuals' needs. In countries where LTC is more affordable and social protection systems less progressive, older adults incur significantly lower levels of LTC costs. Within Europe, not only are costs lower where systems are characterized by higher affordability and lower progressivity, but they also represent a lower share of households' disposable income.InterpretationOur findings indicate that the social protection systems significantly affect the level of out-of-pocket costs faced and reported by older adults with LTC needs as well as the share of their income that is devoted to pay for care.FundingWe received funding from the National Institute on Aging (grant number R01 AG030153). The OECD programme of work on ageing and long-term care is partly funded by the European Union.

Testing Black-White Disparities in Biological Aging Among Older Adults in the United States: Analysis of DNA-Methylation and Blood-Chemistry Methods.

Biological aging is a proposed mechanism through which social determinants drive health disparities. We conducted proof-of-concept testing of 8 DNA-methylation (DNAm) and blood-chemistry quantifications of biological aging as mediators of disparities in healthspan between Black and White participants in the 2016 wave of the Health and Retirement Study (n = 9,005). We quantified biological aging from 4 DNAm "clocks" (Horvath, Hannum, PhenoAge, and GrimAge clock), a DNAm pace-of-aging measure (DunedinPoAm), and 3 blood-chemistry measures (PhenoAge, Klemera-Doubal method biological age, and homeostatic dysregulation). We quantified Black-White disparities in healthspan from cross-sectional and longitudinal data on physical performance tests, self-reported limitations in activities of daily living, and physician-diagnosed chronic diseases, self-rated health, and survival. DNAm and blood-chemistry quantifications of biological aging were moderately correlated (Pearson's r = 0.1-0.4). The GrimAge clock, DunedinPoAm, and all 3 blood-chemistry measures were associated with healthspan characteristics (e.g., mortality effect-size hazard ratios were 1.71-2.32 per standard deviation of biological aging) and showed evidence of more advanced/faster biological aging in Black participants than in White participants (Cohen's d = 0.4-0.5). These measures accounted for 13%-95% of Black-White differences in healthspan-related characteristics. Findings suggest that reducing disparities in biological aging can contribute to building health equity.

Nativity, Family, Disability: Results from the Hispanic Established Populations for the Epidemiologic Study of the Elderly.

ativity and family support may influence attitudes and behaviors that delay or accelerate the disability process in older adults. The objectives of this study were twofold: 1) to evaluate nativity and migration cohort differences in trajectories of disability (assessed by activities of daily living [ADL]) among older Mexican Americans; and 2) to determine the role of objectively measured family support in the association between nativity, migration cohort, and disability changes over time. This is a longitudinal study with up to 18 years follow-up (1993-2011) using data from the Hispanic Established Populations for the Epidemiologic Study of the Elderly (N=2,785, mean age =72.4 years). Disability was assessed using self-reported limitations in activities of daily living (ADL). Nativity and migration cohort were self-reported. Family support was assessed by marital status and the number of their children participants saw each month. Linear growth curve models evaluated the trajectory of ADL disability over 18 years and assessed variations by nativity status, migration cohort and family support. Foreign-born respondents who migrated before age 20 had more starting ADL limitations (β= .36, P<.001) and accumulated disability faster (β=.04, P<.01) compared with their US-born counterparts. In contrast, foreign-born respondents who migrated at later ages showed disability trajectories similar to US-born respondents. Married respondents had a lower level of disability (β= -.14, P<.01) and a lower rate of accumulation over time (β= -.02, P=.001) compared with participants who were not married. Mexican Americans who migrate at younger ages may experience greater disability over time; however, family support may help mitigate the accumulation of disability among older Mexican Americans.

Assessing the test-retest reliability and smallest detectable change of the Haemophilia Activities List.

IntroductionThe Haemophilia Activities List (HAL) is a preferred instrument to measure self‐reported limitations in activities in persons with haemophilia (PWH). Information on reliability and interpretability of HAL scores is lacking.AimTo examine the test‐retest reliability and smallest detectable change (SDC) of the HAL in adult PWH.MethodsFifty adult (≥18 years) persons with mild to severe haemophilia completed the HAL (42 items, 7 domains, optimum 100) at baseline (T0) and 3‐4 weeks later (T1). The intraclass correlation coefficient (ICC) and SDC were calculated for sum and component scores.ResultsFifty persons with haemophilia were included (median age 49 years; 92% haemophilia A; 70% severe haemophilia). The median (interquartile ranges) HAL sum score was 77 (62 to 99) at T0 and 81 (64 to 98) at T1. Reliability was good with ICCs for sum and component scores >0.9. The SDC for the sum score was 10.2, for the upper extremity component score 9.2, for the basic lower extremity component score 16.7 and for the complex lower extremity component score 13.4.ConclusionThe HAL has a good reliability for the sum and component scores. Score changes of the normalized sum HAL score greater than the SDC 10.2 indicate that the change was not a result of measurement error.

Life expectancy and healthy life years associated with diabetes in Germany

Abstract Background While life expectancy (LE) is rising, years lived with severe health impairments especially due to chronic diseases also increase. Diabetes is one of the major chronic diseases with high potential for co-morbidity and premature deaths needing life-long care. Therefore, information about loss in LE and healthy life years (HLY) in people with diabetes compared to people without diabetes is essential for assessing the burden of diabetes. Methods Data on all-cause mortality rates for the general population of Germany in 2014 was drawn from the Federal Statistical Office; mortality rate ratios for people with diabetes compared to people without diabetes were based on claims data from about 70 million people covered by statutory health insurances in 2014. Data of three nationwide health telephone surveys conducted among adults in Germany 2009-2012 (n ∼ 60,000) were used to assess severe health impairments defined as self-reported limitations in daily activities due to diseases for at least six months in people with and without diabetes. Based on these figures, estimates on LE and HLY could be calculated by sex and 5-year age-groups for people with and without diabetes aged ≥ 30 years. Results In both sexes and in all 5-year age-groups, LE and HLY were substantially lower for people with than for people without diabetes. For example, among women in the age group 30-34 years, LE and HLY estimates were 48.0 and 36.4 years for those with diabetes compared to 54.9 and 47.6 years for those without diabetes; in men, these figures were estimated as 42.6 and 32.4 years for those with diabetes compared to 50.3 and 44.1 years for those without diabetes. Differences in LE and HLY between people with and without diabetes attenuated with increasing age. Conclusions The present study revealed substantial reductions in LE and HLY related to diabetes and underlines the importance of integrating both figures in a national diabetes surveillance. Key messages There are substantial differences in life expectancy and healthy life years between people with and without diabetes. Specific intervention and prevention activities should be implemented to tackle disability in persons with diabetes.

Effect of Using Additional Readers for Flash Glucose Monitoring System on Metabolic Control, Safety, and the Incidence of Complications in Patients With Diabetes Mellitus.

The FreeStyle Libre is a flash glucose monitoring (FGM) system, and glucose levels are measured when the reader is brought to the sensor. Additional readers allow for the conversion into a continuous glucose monitoring (CGM) system. These transmitters read data from the sensor and send them to a bluetooth-enabled device thanks to which the user acquires glucose measurements automatically. This modification allows the patient to receive alerts when blood glucose values are abnormal. The study relied on the results of an anonymous online survey conducted among patients with diabetes or their caregivers who use Facebook groups. A total of 132 respondents who met certain criteria (diabetic who use FGM system longer than 3 months, at least 14 days per month) were enrolled in the study. A significant decrease in self-reported glycated hemoglobin levels was found in adults and children using readers (variable: age P = .008; time P < .001), regardless of the age. The use of additional readers was associated with a significant decrease in the number of self-reported episodes of hypoglycemia (P < .001) and an improvement in the quality of life (based on self-reported limitations in everyday activities, social contacts, work/school, or doing sports). The use of additional readers for FGM system improves the metabolic control of diabetes and the quality of life, and has a positive effect on the safety of treatment. Flash glucose monitoring used together with additional readers operates as a CGM system and seems to be helpful for patients for the monitoring of interstitial levels of glucose; however, they should be careful when they use do it yourself solution.

NATIVITY AND DISABILITY TRAJECTORIES AMONG TWO COHORTS

Nativity is an important characteristic in the context of disability in older adults, as it may influence attitudes and behaviors that can delay or accelerate the disability process. This study aims to assess trajectories of disability (defined as lower-body functional limitations, limitations in daily and instrumental activities of daily living, and gross mobility) in foreign-born and US-born Mexican Americans between 1993 and 2013. We used eight waves (1993 -2013) from the Hispanic Established Populations for the Epidemiologic Study of the Elderly (HEPESE; N=3050, mean age at baseline=73.6 (±6.8). Disability was assessed using self-reported limitations in activities of daily living (ADL /IADL). Nativity and age-at-migration were collected by self-report. We used linear and quadratic growth curve models to evaluate the trajectory of ADL/IADL disability over a period of 20 years and assessed variations by nativity status while adjusting for potential confounders. Approximately 19% of foreign-born and 17% of US-born reported having at least one ADL, while 51.5% natives and 58.7% of foreign-born had at least one IADL. Our results showed that after controlling for age at baseline, sex, marital status, self-reported health, chronic conditions, and education, foreign-born older adults were less likely to have ADL/IADL disability at baseline, but exhibited a faster rate of increase in disability over time (β =0.31 for ADL, β=0.07 for IADL). Our findings show that foreign-born older adults are accumulating disability at faster compared with their native peers, highlighting the importance of evaluating nativity differences in the health outcomes of Hispanic population at old age.

The Paediatric Haemophilia Activities List (pedHAL) in routine assessment: changes over time, child-parent agreement and informative domains.

IntroductionThe Paediatric Haemophilia Activities List (pedHAL) assesses self‐reported limitations in activities and participation in children with haemophilia.AimTo assess longitudinal changes, child‐parent agreement and to identify which pedHAL domains yielded most information in boys with access to early prophylaxis.MethodsThe pedHAL (53 items, 7 domains, optimum 100) was completed annually at the Van Creveldkliniek by boys aged 4‐18 years with moderate/severe haemophilia and their parents. Development of the pedHAL in relation to bleeds, changes per domain over 3‐5 years, child‐parent agreement (% difference child‐parent≤|5|) per domain and domain scores (limitations defined as ≤ 95) were determined.ResultsSeventy‐three patients and their parents (92% severe haemophilia, median age 13.1 years [range 5.4;18.0]) completed ≥1 pedHAL. Median (IQR) pedHAL sum score was 99.5 (95.2;100.0) for children and 99.6 (95.8;100.0) for parents. If patients scored >95 and had no joint and/or muscle bleed, 90.9% of the patients scored >95 at the next assessment. The median change in sum score was 0.0 for both the 3‐ and 5‐year interval. Child‐parent agreement varied between domains from 92% (‘self‐care’) to 71% (‘sitting/kneeling/standing’). Most limitations were reported in the domains ‘sitting/kneeling/standing’, ‘functions of the legs’ and ‘leisure activities and sports.’ConclusionIn routine clinical practice in Dutch children on prophylaxis, pedHAL scores were high and remained stable in 3‐5 years at group level. In individual patients without joint and/or muscle bleeds, pedHAL scores remained high after 1 year. Child‐parent agreement was not optimal which indicated that both child report and parent proxy should be reported.

Predictors of decline in self-reported health: addressing non-ignorable dropout in longitudinal studies of aging

Predictors of decline in health in older populations have been investigated in multiple studies before. Most longitudinal studies of aging, however, assume that dropout at follow-up is ignorable (missing at random) given a set of observed characteristics at baseline. The objective of this study was to address non-ignorable dropout in investigating predictors of declining self-reported health (SRH) in older populations (50 years or older) in Sweden, the Netherlands, and Italy. We used the SHARE panel survey, and since only 2895 out of the original 5657 participants in the survey 2004 were followed up in 2013, we studied whether the results were sensitive to the expectation that those dropping out have a higher proportion of decliners in SRH. We found that older age and a greater number of chronic diseases were positively associated with a decline in self-reported health in the three countries studies here. Maximum grip strength was associated with decline in self-reported health in Sweden and Italy, and self-reported limitations in normal activities due to health problems were associated with decline in self-reported health in Sweden. These results were not sensitive to non-ignorable dropout. On the other hand, although obesity was associated with decline in a complete case analysis, this result was not confirmed when performing a sensitivity analysis to non-ignorable dropout. The findings, thereby, contribute to the literature in understanding the robustness of longitudinal study results to non-ignorable dropout while considering three different population samples in Europe.

Monitoring joint health in haemophilia: Factors associated with deterioration.

Joint bleeds in patients with haemophilia may result in haemophilic arthropathy. Monitoring joint health is essential for identifying early signs of deterioration and allows timely adjustment of treatment. The aim was to describe changes in joint health over 5-10years follow-up and identify factors associated with joint health deterioration in patients with haemophilia. A post hoc analysis was performed from previous cohort studies in patients with moderate/severe haemophilia, ≥16years. Joint health of ankles, knees and elbows was measured with the Haemophilia Joint Health Score (HJHS) from 2006-2008 (T0) to 2011-2016 (T1). Analyses were performed on patient level (ΔHJHS-total) and joint level (ΔHJHS-joint). Deterioration was defined as ΔHJHS-total ≥4 and ΔHJHS-joint ≥2. Sixty-two patients (median age 25, 73% severe haemophilia, median [interquartile range] 0.0 [0.0;2.0] joint bleeds between T0 to T1) were included. After median 8years, HJHS-total deteriorated in 37% and HJHS-joint in 17%. Ankle joints (31%) showed deterioration more often than elbows (19%) and knees (3%). Deterioration of HJHS-total was only associated with severe haemophilia. Deterioration of HJHS-joint was weakly associated with a lower HJHS at baseline and more self-reported limitations in activities, and strongly with more joint bleeds between T0 and T1 and presence of synovitis. In 37% of patients with moderate/severe haemophilia and low joint bleeding rates, joint health deteriorated over 5-10years. Ankle and elbow joints showed deterioration most frequently. Factors found in this study help to identify which joints need frequent monitoring in patients with haemophilia with access to early prophylaxis.

Effects of osteopathic manipulative treatment on hand function, disease symptoms and functional status in systemic sclerosis: a series of single-case studies in working women

BackgroundSome studies involving manual techniques combined with exercises have shown encouraging results in reducing disability in patients with systemic sclerosis (SSc). There is a paucity of data on the effect of osteopathic manipulative treatment (OMT) for this population. ObjectiveOur aim was to explore the effects of OMT on hand function, disease symptoms and functional status in patients with SSc. MethodsA series of single-case studies was undertaken. Six female SSc participants with hand contractures and self-reported limitations in vocational activities received 9 weekly semi-standardized OMT sessions targeting the upper limbs, thorax and cranial base. The outcomes of interest were hand stiffness, range of motion of the fingers, distal upper limbs skin score, disease symptoms (pain, dyspnea and fatigue), hand and global disability, work disability and health-related quality of life. ResultsAll participants (n = 6/6) improved in hand stiffness and in range of motion of the fingers, and most improved on distal upper limbs skin score (n = 4/6). Disease symptoms improved (pain: n = 6/6, dyspnea: n = 3/4, fatigue: n = 4/6) as did functional status (global disability: n = 5/5, work disability: n = 4/6, health-related quality of life, physical (n = 6/6) and mental (n = 4/6) components). When comparisons were possible, almost all observed improvements were greater than minimal clinically important differences suggested for this population. ConclusionThese findings suggest that OMT can be effective in relieving symptoms and reducing disability in SSc.

Evaluating outcome of prophylaxis in haemophilia: objective and self-reported instruments should be combined.

Routine outcome assessment of prophylaxis should use validated tools, while balancing comprehensiveness and burden. Collecting overlapping information should be avoided. To assess correlations between different outcome assessment tools in haemophilia. From an international cross-sectional study, data on objective outcome (Haemophilia Joint Health Score (HJHS 2.1, range 0-124), radiological Pettersson score) and self-reported joint bleeding, Haemophilia Activities List (HAL, range 100-0), health-related quality of life (SF-36, including five physical and five mental domain scores, range 100-0), and Utility (SF6D and EQ-5D, range 1.0-0) were extracted. Spearman's correlations were calculated: ≥0.8 very strong, 0.60-0.79 strong, 0.40-0.59 moderate. Ninety patients with severe haemophilia, on prophylaxis since median age 3.4 years, were evaluated at median 25.5 years (range 16.0-37.6). Objective outcome was favourable (median HJHS 2.1 6 points, Pettersson score 9 points). Self-reported outcome showed a median of 7 joint bleeds in 5 years, median HAL sum 96 points, high scores for physical domains of SF-36 (median 80-95) and high Utility values (median SF6D 0.87; EQ-5D 0.84). Physical examination (HJHS 2.1) showed strong correlation with radiological scores, moderate correlation with physical domains of the SF-36 and Utility, but no correlation with self-reported bleeding or limitations in activities (HAL). Bleeding was not associated with any other outcome parameter. The HAL was only correlated with the SF36 'Physical functioning' domain. For the evaluation of patients on early prophylaxis, information on bleeding should be complemented by objective joint assessment as well as self-reported limitations in activities and quality of life.

Breast Cancer Survivors Self-Reported Symptoms and Limitations in Activities and Participation: Outcomes of Prospective Surveillance

To compare symptoms, activities and participation between breast cancer survivors (BCS) and controls in a prospective surveillance model (PSM) prior to cancer treatment and 12-24 months post-operatively using the Upper Limb Disability Questionnaire (ULDQ). We hypothesize there are no differences between groups for symptoms, activities and participation secondary to PSM. The ULDQ is a patient reported outcome tool (PRO) developed to assess symptoms, body structure and function, activities and participation in BCS to prevent adverse effects of cancer treatment. We are unaware of a PRO that assesses these domains within the breast cancer population. CorrectionArchives of Physical Medicine and RehabilitationVol. 98Issue 5PreviewResearch Poster #4677 in the 2015 ACRM American Congress of Rehabilitation Medicine Annual Conference Late-Breaking Research Abstracts published in December 2015 contained an incomplete list of authors and a missing affiliation for the presenter (To view the full issue, please visit the Archives journal website at http://www.archives-pmr.org/issues .) The corrected author list and affiliation appears below. Full-Text PDF

Evaluation of the effect of a comprehensive multidisciplinary care pathway for hip fractures: design of a controlled study

BackgroundHip fractures constitute an economic burden on healthcare resources. Most persons with a hip fracture undergo surgery. As morbidity and mortality rates are high, perioperative care leaves room for improvement. Improvement can be achieved if it is organized in comprehensive care pathways, but the effectiveness of these pathways is not yet clear. Hence the objective of this study is to compare the clinical effectiveness of a comprehensive care pathway with care as usual on self-reported limitations in Activities of Daily Living.Methods/DesignA controlled trial will be conducted in which the comprehensive care pathway of University Medical Center Groningen will be compared with care as usual in two other, nonacademic, hospitals. In this trial, propensity scores will be used to adjust for differences at baseline between the intervention and control group. Propensity scores can be used in intervention studies where a classical randomized controlled trial is not feasible. Patients aged 60 years and older will be included. The hypothesis is that 15% more patients at University Medical Center Groningen compared with patients in the care-as-usual condition will have recovered at least as well at 6 months follow-up to pre-fracture levels for Activities of Daily Living.DiscussionThis study will yield new knowledge with respect to the clinical effectiveness of a comprehensive care pathway for the treatment of hip fractures. This is relevant because of the growing incidence of hip fractures and the consequent massive burden on the healthcare system. Additionally, this study will contribute to the growing knowledge of the application of propensity scores, a relatively novel statistical technique to simulate a randomized controlled trial in studies where it is not possible or difficult to execute this kind of design.Trial registrationNederlands Trial Register NTR3171