Episodic disability questionnaire (EDQ) measurement properties among adults living with HIV in Canada, Ireland, United Kingdom, and United States.

BACKGROUND: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. METHODS: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). RESULTS: Three hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. CONCLUSIONS: The EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.

A scoping review to create a framework for the steps in developing condition-specific preference-based instruments de novo or from an existing non-preference-based instrument: use of item response theory or Rasch analysis.

BACKGROUND: There is no widely accepted framework to guide the development of condition-specific preference-based instruments (CSPBIs) that includes both de novo and from existing non-preference-based instruments. The purpose of this study was to address this gap by reviewing the published literature on CSPBIs, with particular attention to the application of item response theory (IRT) and Rasch analysis in their development. METHODS: A scoping review of the literature covering the concepts of all phases of CSPBI development and evaluation was performed from MEDLINE, Embase, PsychInfo, CINAHL, and the Cochrane Library, from inception to December 30, 2022. RESULTS: The titles and abstracts of 1,967 unique references were reviewed. After retrieving and reviewing 154 full-text articles, data were extracted from 109 articles, representing 41 CSPBIs covering 21 diseases or conditions. The development of CSPBIs was conceptualized as a 15-step framework, covering four phases: 1) develop initial questionnaire items (when no suitable non-preference-based instrument exists), 2) establish the dimensional structure, 3) reduce items per dimension, 4) value and model health state utilities. Thirty-nine instruments used a type of Rasch model and two instruments used IRT models in phase 3. CONCLUSION: We present an expanded framework that outlines the development of CSPBIs, both from existing non-preference-based instruments and de novo when no suitable non-preference-based instrument exists, using IRT and Rasch analysis. For items that fit the Rasch model, developers selected one item per dimension and explored item response level reduction. This framework will guide researchers who are developing or assessing CSPBIs.

Developing a short-form version of the HIV Disability Questionnaire (SF-HDQ) for use in clinical practice: a Rasch analysis.

BACKGROUND: Disability is an increasingly important health-related outcome to consider as more individuals are now aging with Human Immunodeficiency Virus (HIV) and multimorbidity. The HIV Disability Questionnaire (HDQ) is a patient-reported outcome measure (PROM), developed to measure the presence, severity and episodic nature of disability among adults living with HIV. The 69-item HDQ includes six domains: physical, cognitive, mental-emotional symptoms and impairments, uncertainty and worrying about the future, difficulties with day-to-day activities, and challenges to social inclusion. Our aim was to develop a short-form version of the HIV Disability Questionnaire (SF-HDQ) to facilitate use in clinical and community-based practice among adults living with HIV. METHODS: We used Rasch analysis to inform item reduction using an existing dataset of adults living with HIV in Canada (n = 941) and Ireland (n = 96) who completed the HDQ (n = 1037). We evaluated overall model fit with Cronbach's alpha and Person Separation Indices (PSIs) (≥ 0.70 acceptable). Individual items were evaluated for item threshold ordering, fit residuals, differential item functioning (DIF) and unidimensionality. For item threshold ordering, we examined item characteristic curves and threshold maps merging response options of items with disordered thresholds to obtain order. Items with fit residuals > 2.5 or less than - 2.5 and statistically significant after Bonferroni-adjustment were considered for removal. For DIF, we considered removing items with response patterns that varied according to country, age group (≥ 50 years versus < 50 years), and gender. Subscales were considered unidimensional if ≤ 5% of t-tests comparing possible patterns in residuals were significant. RESULTS: We removed 34 items, resulting in a 35-item SF-HDQ with domain structure: physical (10 items); cognitive (3 items); mental-emotional (5 items); uncertainty (5 items); difficulties with day-to-day activities (5 items) and challenges to social inclusion (7 items). Overall models' fit: Cronbach's alphas ranged from 0.78 (cognitive) to 0.85 (physical and mental-emotional) and PSIs from 0.69 (day-to-day activities) to 0.79 (physical and mental-emotional). Three items were rescored to achieve ordered thresholds. All domains demonstrated unidimensionality. Three items with DIF were retained because of their clinical importance. CONCLUSION: The 35-item SF-HDQ offers a brief, comprehensive disability PROM for use in clinical and community-based practice with adults living with HIV.

Disability and self-care living strategies among adults living with HIV during the COVID-19 pandemic.

BACKGROUND: Events associated with the COVID-19 pandemic, such as physical distancing, closure of community services, postponement of health appointments, and loss of employment can lead to social isolation, financial uncertainty, and interruption of antiretroviral adherence, resulting in additional health-related challenges (disability) experienced among adults living with chronic illness such as HIV. 'Living strategies' is a concept derived from the perspectives of people living with HIV, defined as behaviors, attitudes and beliefs adopted by people living with HIV to help deal with disability associated with HIV and multi-morbidity. Our aim was to describe disability among adults living with HIV and self-care living strategies used during the COVID-19 pandemic. METHODS: Adults living with HIV in Toronto, Ontario, Canada, including some with pre-pandemic HIV Disability Questionnaire (HDQ) data, completed a cross-sectional web-based survey between June-August 2020. The survey included the HDQ and questions about self-care living strategy use during the pandemic. We compared disability (HDQ) scores prior to versus during the pandemic using paired t-tests. We reported the proportion of participants who engaged in various living strategies at least 'a few times a week' or 'everyday' during the pandemic. RESULTS: Of the 63 respondents, 84% were men, median age 57 years, and 62% lived alone. During the pandemic the greatest disability severity was in the uncertainty [median 30; Interquartile range (IQR): 16, 43] and mental-emotional (25; IQR: 14, 41) domains. Among the 51 participants with pre-pandemic data, HDQ severity scores were significantly greater (worse) during the pandemic (vs prior) in all domains. Greatest change from prior to during the pandemic was in the mental-emotional domain for presence (17.7; p < 0.001), severity (11.4; p < 0.001), and episodic nature (9.3; p < 0.05) of disability. Most participants (> 60%) reported engaging a 'few times a week' or 'everyday' in self-care strategies associated with maintaining sense of control and adopting positive attitudes and beliefs. CONCLUSIONS: People living with HIV reported high levels of uncertainty and mental-emotional health challenges during the pandemic. Disability increased across all HDQ dimensions, with the greatest worsening in the mental-emotional health domain. Results provide an understanding of disability and self-care strategy use during the COVID-19 pandemic.

Validation process of Toronto Exremity Salvage Score in Italian: A quality of life measure for patients with extremity bone and soft tissue tumors.

BACKGROUND AND OBJECTIVES: Limb salvage surgery remains the standard treatment in bone and soft tissue tumors. Toronto Extremity Salvage Score (TESS) is the most used quality of life measure. Our objective was to perform cross-cultural adaptation and validation in Italian, testing test-retest reliability, construct validity, and responsiveness. METHODS: We interviewed patients already treated for content validity. A total of 124 patients completed TESS and other questionnaires presurgery, at 3 months, 3 months + 2 weeks, and 6 months follow-up. We calculated intraclass correlation coefficients (ICCs) for reliability, associations with Pearson's r, and change over time with paired T tests. RESULTS: A new item regarding touch-screen devices was added to the upper extremity (UE) questionnaire. ICC resulted of 0.99 for lower extremity (LE) and 0.98 for UE patients, Pearson's r between TESS and Musculoskeletal Tumor Society was .66 and .64, EuroQol-5D-5L r was .62 and .61, and r between TESS and short form-36 physical function subscale was .76 and .71 for LE and UE groups, respectively. Paired T test results were statistically significant to detect change over time (0.03, 0.04, and 0.04 for LE groups and 0.03, 0.01, and 0.04 for UE groups). CONCLUSION: The Italian version of TESS can be used for the bone and soft tissue sarcoma population in clinical trials in Italy and with Italian speaking patients abroad to ensure patients' perspectives for efficacy and efficiency of treatments.

Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy.

OBJECTIVES: To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date. METHODS: Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITÉ Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents. RESULTS: Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The "agreement" classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called "growing discrepancy." CONCLUSIONS: Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.

Development and content validation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire for children with Duchenne muscular dystrophy.

AIM: To develop a patient-reported outcome measure that comprehensively captures the health-related priorities of children with Duchenne muscular dystrophy (DMD). METHOD: Children with DMD and their parents completed the iteratively revised versions of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), followed by a cognitive interview to develop a pilot version of a new measure. Multidisciplinary health care professionals completed an item-by-item analysis of the measure and a 14-item sensibility questionnaire. Minimum content validity ratio for each item of the new measure and the mean score (0-7) for the items of the sensibility questionnaire were calculated. RESULTS: The CPCHILD underwent changes over 19 interviews with children and their parents, resulting in the pilot Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD). The content validity ratio of each MDCHILD item ranged from 0.85 to 1 based on health care professionals' ratings. The mean score exceeded the threshold of four for all items of the sensibility questionnaire. Based on child, parent, and health care professional recommendations, 16 items were added, six eliminated, and 15 items modified from the original CPCHILD. The MDCHILD consists of 47 items over seven domains. INTERPRETATION: The MDCHILD met all sensibility criteria by children with DMD, their parents, and health care professionals, and is ready for psychometric evaluation. WHAT THIS PAPER ADDS: The Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD) is a new patient-reported outcome measure for Duchenne muscular dystrophy (DMD). The Priority Framework of Outcomes underpins the content for the MDCHILD. The MDCHILD incorporates the health-related priorities of males with DMD and their parents. The MDCHILD was deemed sensible by children, their parents, and health care professionals.

Quality of Life in Huntington's Disease: Critique and Recommendations for Measures Assessing Patient Health-Related Quality of Life and Caregiver Quality of Life.

The compromise of quality of life in Huntington's disease is a major issue, both for individuals with the disease as well as for their caregivers. The International Parkinson and Movement Disorder Society commissioned a review of the use and clinimetric validation status of measures used in Huntington's disease to assess aspects related with quality of life and to make recommendations on their use following standardized criteria. We included both patient-centered measures (patient health-related quality-of-life measures) and caregiver-centered measures (caregiver quality-of-life measures). After conducting a systematic literature search, we included 12 measures of patient health-related quality of life and 2 measures of caregiver quality of life. Regarding patient-centered measures, the Medical Outcomes Study 36-Item Short-Form Health Survey is "recommended" as a generic assessment of health-related quality of life in patients with Huntington's disease. The 12-Item Short Form Health Survey, the Sickness Impact Profile, the 12-item World Health Organization Disability Assessment Schedule, and the Huntington's Disease Health-Related Quality of Life questionnaire are "suggested." No caregiver-centered quality-of-life measure obtained a "recommended" status. The Alzheimer's Carer's Quality of Life Inventory and the Huntington's Disease Quality of Life Battery for Carers are "suggested." Recognizing that the assessment of patient health-related quality of life can be challenging in Huntington's disease, as patients may lack insight and there is insufficient clinimetric testing of these scales, the committee concluded that further validation of currently available health-related quality-of-life measures should be undertaken, namely, those Huntington's disease-specific health-related quality-of-life measures that have recently been reported and used. © 2018 International Parkinson and Movement Disorder Society.

Clinical classes of injured workers with chronic low back pain: a latent class analysis with relationship to working status.

PURPOSE: To determine (a) clinical classes of injured workers with chronic low back pain (CLBP), (b) predictors of class membership and (c) associations of classes with baseline work status. METHODS: Patients with CLBP from a tertiary care outpatient clinic in Toronto, Canada were sampled. Latent class analysis was applied to determine class structure using physical, psychological and coping indicators. Classes were interpreted by class-specific means and analyzed for predictors of membership. Lastly, association of the classes with being off work was modeled. RESULTS: A 3-class model was chosen based on fit criteria, theoretical and clinical knowledge of this population. The resultant 3 classes represented low, moderate and high levels of clinical severity. Predictors of being in the high severity group compared to the low severity group were < high school education [odds ratio (OR) 3.06, 95% CI (1.47, 6.37)] and comorbidity total [OR 1.28, 95% CI (1.03, 1.59)]. High severity class membership was associated with four times increased risk of being off work at baseline compared to those in the low severity group [OR 3.98, 95% CI (1.61, 6.34)]. CONCLUSIONS: In a cohort of injured workers with CLBP, 3 clinical classes were identified with distinct psychological and physical profiles. These profiles are useful in aiding clinicians to identify patients of high clinical severity who may be potentially at risk for problematic return to work.

Cross-cultural adaptation and validation of the Japanese version of the Toronto Extremity Salvage Score (TESS) for patients with malignant musculoskeletal tumors in the upper extremities.

BACKGROUND: The Toronto Extremity Salvage Score (TESS) is a widely used disease-specific patient-completed questionnaire for the assessment of physical function in patients with musculoskeletal tumors; however, there had not been the validated Japanese version of the TESS. The aim of this study was to validate the Japanese version of the TESS in patients with musculoskeletal tumors in the upper extremity. METHODS: After developing a Japanese version of the TESS, the questionnaire was administered to 53 patients to examine its reliability and validity in comparison with the Musculoskeletal Tumor Society (MSTS) scoring system and Short Form-36 (SF-36). RESULTS: Test-retest reliability with intraclass correlation coefficient (0.93) and internal consistency with Cronbach's alpha (0.90) were excellent. Factor analysis showed that the construct structure consisted of 3-item clusters, and the Akaike Information Criterion network also demonstrated that the items could be divided into 3 domains according to their content. The TESS strongly correlated with the MSTS rating scale (r = 0.750; P < 0.001) and the SF-36 physical functioning scale (r = 0.684; P < 0.001). However, as expected, the TESS had low correlations with the SF-36 mental health and role-emotional subscales and the MSTS scoring system manual dexterity domain. CONCLUSIONS: Our study suggests that the TESS is a reliable and valid instrument to measure patient-reported physical functioning in patients with upper extremity sarcoma.

Validated Measures of Illness Perception and Behavior in People with Knee Pain and Knee Osteoarthritis: A Scoping Review.

OBJECTIVE: To identify validated measures that capture illness perception and behavior and have been used to assess people who have knee pain/osteoarthritis. METHODS: A scoping review was performed. Nine electronic databases were searched for records from inception through April 19, 2015. Search terms included illness perception, illness behavior, knee, pain, osteoarthritis, and their related terms. This review included English language publications of primary data on people with knee pain/osteoarthritis who were assessed with validated measures capturing any of 4 components of illness perception and behavior: monitor body, define and interpret symptoms, take remedial action, and utilize sources of help. Seventy-one publications included relevant measures. Two reviewers independently coded and analyzed each relevant measure within the 4 components. RESULTS: Sixteen measures were identified that capture components of illness perception and behavior in the target population. These measures were originally developed to capture constructs that include coping strategies/skills/styles, illness belief, illness perception, self-efficacy, and pain behavior. Coding results indicated that 5, 11, 12, and 5 of these measures included the monitor body, define and interpret symptoms, take remedial action, and utilize sources of help components, respectively. CONCLUSIONS: Several validated measures were interpreted as capturing some components, and only 1 measure was interpreted as capturing all of the components of illness perception and behavior in the target population. A measure that comprehensively captures illness perception and behavior could be valuable for informing and evaluating therapy for patients along a continuum of symptomatic knee osteoarthritis.

Rating scales for behavioral symptoms in Huntington's disease: Critique and recommendations.

Behavioral symptoms are an important feature of Huntington's disease and contribute to impairment in quality of life. The Movement Disorder Society commissioned the assessment of the clinimetric properties of rating scales in Huntington's disease to make recommendations regarding their use, following previously used standardized criteria. A systematic literature search was conducted to identify the scales used to assess behavioral symptoms in Huntington's disease. For the purpose of this review, 7 behavioral domains were deemed significant in Huntington's disease: irritability, anxiety, depression, apathy, obsessive-compulsive behaviors, psychosis, and suicidal ideation. We included a total of 27 behavioral rating scales, 19 of which were of a single behavioral domain and the remaining 8 scales included multiple behavioral domains. Three rating scales were classified as "recommended" exclusively for screening purposes: the Irritability Scale for irritability, the Beck Depression Inventory-II, and the Hospital Anxiety and Depression Scale for depression. There were no "recommended" scales for other purposes such as diagnosis, severity, or change in time or to treatment. The main challenges identified for assessment of behavioral symptoms in Huntington's disease are the co-occurrence of multiple behavioral symptoms, the particular features of a behavioral symptom in Huntington's disease, and the need to address stage- and disease-specific features, including cognitive impairment and lack of insight. The committee concluded that there is a need to further validate currently available behavioral rating scales in Huntington's disease to address gaps in scale validation for specific behavioral domains and purpose of use. © 2016 International Parkinson and Movement Disorder Society.

Health-related quality of life following treatment for extremity soft tissue sarcoma.

BACKGROUND AND OBJECTIVES: The primary objective of this study was to estimate the change in health-related quality of life (HRQL) 1 year following treatment for extremity soft tissue sarcoma (STS), measured by the EQ-5D. Secondary objectives included determining clinical variables associated with HRQL at 1 year, estimating the proportion with a clinically important difference (CID) in HRQL, and evaluating variability within EQ-5D domains. METHODS: Patients over the age of 16 years, treated for a localized extremity STS, were included. The EQ-5D change score from pre-treatment to 1-year follow-up was determined. The association of clinical variables with EQ-5D scores was estimated using a linear regression model. The proportion of patients with a CID in HRQL score was determined. A vector analysis of the EQ-5D domains was undertaken. RESULTS: The mean EQ-5D change score was 0.02. Age, sex, disease status, and initial EQ-5D score were associated with EQ-5D score at 1 year. There was a CID improvement in 32% and a deterioration in 24%. The anxiety and depression domain demonstrated the most change between baseline and 1 year after treatment. CONCLUSION: Most patients maintain a high level of HRQL following treatment for extremity STS. J. Surg. Oncol. 2016;114:821-827. © 2016 2016 Wiley Periodicals, Inc.

Commonalities and differences in the implementation of models of care for arthritis: key informant interviews from Canada.

BACKGROUND: Timely access to effective treatments for arthritis is a priority at national, provincial and regional levels in Canada due to population aging coupled with limited health human resources. Models of care for arthritis are being implemented across the country but mainly in local contexts, not from an evidence-informed policy or framework. The purpose of this study is to examine existing models of care for arthritis in Canada at the local level in order to identify commonalities and differences in their implementation that could point to important considerations for health policy and service delivery. METHODS: Semi-structured key informant interviews were conducted with 70 program managers and/or care providers in three Canadian provinces identified through purposive and snowball sampling followed by more detailed examination of 6 models of care (two per province). Interviews were transcribed verbatim and analyzed thematically using a qualitative descriptive approach. RESULTS: Two broad models of care were identified for Total Joint Replacement and Inflammatory Arthritis. Commonalities included lack of complete and appropriate referrals from primary care physicians and lack of health human resources to meet local demands. Strategies included standardized referrals and centralized intake and triage using non-specialist health care professionals. Differences included the nature of the care and follow-up, the role of the specialist, and location of service delivery. CONCLUSIONS: Current models of care are mainly focused on Total Joint Replacement and Inflammatory Arthritis. Given the increasing prevalence of arthritis and that published data report only a small proportion of current service delivery is specialist care; provision of timely, appropriate care requires development, implementation and evaluation of models of care across the continuum of care.

Pain management among Dominican patients with advanced osteoarthritis: a qualitative study.

BACKGROUND: Advanced osteoarthritis and total joint replacement (TJR) recovery are painful experiences and often prompt opioid use in developed countries. Physicians participating in the philanthropic medical mission Operation Walk Boston (OpWalk) to the Dominican Republic have observed that Dominican patients require substantially less opioid medication following TJR than US patients. We conducted a qualitative study to investigate approaches to pain management and expectations for postoperative recovery in patients with advanced arthritis undergoing TJR in the Dominican Republic. METHODS: We interviewed 20 patients before TJR about their pain coping mechanisms and expectations for postoperative pain management and recovery. Interviews were conducted in Spanish, translated, and analyzed in English using content analysis. RESULTS: Patients reported modest use of pain medications and limited knowledge of opioids, and many relied on non-pharmacologic therapies and family support to cope with pain. They held strong religious beliefs that offered them strength to cope with chronic arthritis pain and prepare for acute pain following surgery. Patients exhibited a great deal of trust in powerful others, expecting God and doctors to cure their pain through surgery. CONCLUSION: We note the importance of understanding a patient's individual pain coping mechanisms and identifying strategies to support these coping behaviors in pain management. Such an approach has the potential to reduce the burden of chronic arthritis pain while limiting reliance on opioids, particularly for patients who do not traditionally utilize powerful analgesics.

Cross-cultural adaptation and validation of the Japanese version of the Toronto Extremity Salvage Score (TESS) for patients with malignant musculoskeletal tumors in the lower extremities.

BACKGROUND: Before this work a Japanese version of the Toronto Extremity Salvage Score (TESS), a disease-specific patient-completed questionnaire widely used to assess the physical function of patients with musculoskeletal tumors, had not been developed. The purpose of this study was cross-cultural adaptation and validation of the English-language version of the TESS to facilitate international comparisons of treatment results. METHODS: The TESS was translated into Japanese, back-translated into English, and reviewed by a committee to develop a consensus Japanese version of the TESS. One hundred and two patients were assessed by use of this Japanese version to examine its reliability and validity. RESULTS: Test-retest reliability and internal consistency determined by using the intraclass correlation coefficient (0.941) and Cronbach's alpha test (0.978), respectively, were excellent. Factor analysis showed that the structure consisted of a three-item cluster; the Akaike information criterion (AIC) network also demonstrated that the items could be divided into three domains in accordance with their content. The Japanese version of the TESS correlated with the Musculoskeletal Tumor Society rating scale (r = 0.811; P < 0.001) and the Short Form-36 physical component summary (r = 0.785; P < 0.001). CONCLUSIONS: Our study suggested that the Japanese version of the TESS is a reliable and valid instrument for measuring patient-reported functional outcome for patients with lower extremity sarcoma, and that it enables international comparisons of treatment results. The spatial association of each item demonstrated by using the AIC network also suggested that the underlying structure of the TESS reflected its coverage of a wide range of physical functions.

Relationships between dimensions of disability experienced by adults living with HIV: a structural equation model analysis.

As individuals age with HIV it is increasingly important to consider the health-related consequences of HIV and multiple morbidities, known as disability. We assessed relationships between four dimensions of disability among adults living with HIV. We conducted a structural equation modeling analysis using data from 913 participants in the Ontario HIV Treatment Network Cohort Study to determine relationships between four latent variables of disability in the Episodic Disability Framework: physical symptoms and impairments, mental health symptoms and impairments, difficulties with day-to-day activities, and challenges to social inclusion. Results indicated that physical symptoms and impairments, mental health symptoms and impairments and difficulties with day-to-day activities directly or indirectly predicted challenges to social inclusion for adults living with HIV. Challenges to social inclusion were directly predicted by mental health symptoms and indirectly by physical health symptoms via (mediated by) having difficulties carrying out day-to-day activities and mental health symptoms and impairments. These findings provide a basis for conceptualizing disability experienced by people living with HIV.

Which patients are most likely to benefit from total joint arthroplasty?

OBJECTIVE: To evaluate patient predictors of good outcome following total joint arthroplasty (TJA). METHODS: A population cohort with hip/knee arthritis (osteoarthritis [OA] or inflammatory arthritis) ages ≥55 years was recruited between 1996 and 1998 (baseline) and assessed annually for demographics, troublesome joints, health status, and overall hip/knee arthritis severity using the Western Ontario and McMaster Universities OA Index (WOMAC). Survey data were linked with administrative databases to identify primary TJAs. Good outcome was defined as an improvement in WOMAC summary score greater than or equal to the minimal important difference (MID; 0.5 SD of the mean change). Logistic regression and Akaike's information criterion were used to determine the optimal number of predictors and the best model of that size. Log Poisson regression was used to determine the relative risk (RR) for a good outcome. RESULTS: Primary TJA was performed in 202 patients (mean age 71.0 years; 79.7% female; 82.7% with >1 troublesome hip/knee; 65.8% knee replacements). Mean improvement in WOMAC summary score was 10.2 points (SD 18.05; MID 9 points). Of these patients, 53.5% experienced a good outcome. Four predictors were optimal. The best 4-variable model included pre-TJA WOMAC, comorbidity, number of troublesome hips/knees, and arthritis type (C statistic 0.80). The probability of a good outcome was greater with worse (higher) pre-TJA WOMAC summary scores (adjusted RR 1.32 per 10-point increase; P < 0.0001), fewer troublesome hips/knees (adjusted RR 0.82 per joint; P = 0.002), OA (adjusted RR for rheumatoid arthritis versus OA 0.33; P = 0.009), and fewer comorbidities (adjusted RR per condition 0.88; P = 0.01). CONCLUSION: In an OA cohort with a high prevalence of multiple troublesome joints and comorbidity, only half achieved a good TJA outcome, defined as improved pain and disability. A more comprehensive assessment of the benefits and risks of TJA is warranted.

An examination of adolescent bone tumor patient responses on the Activities Scale for Kids (ASK).

This study provides an examination of responses on the Activities Scale for Kids, performance version (ASKp), for evaluating physical function in adolescents with malignant lower extremity bone tumors. Twenty-one participants (ages 10.4 to 17.9 years), who had tumor resection surgery, completed the ASKp on two occasions. ASKp data were examined for ceiling and/or floor effects, item distributions, and Not Applicable (NA) responses, as well as textual comments. Ceiling effects were 12.5% and 19%, and 0% demonstrated floor effects. The extreme response options were chosen most frequently, and approximately one third of respondents used NA more than 10% of the time. Overall, this population demonstrated moderately high NA rates and higher than anticipated ceiling effects on the ASKp. These data suggest that caution should be taken when interpreting item-level data in this population and further studies guiding the scoring and interpretation of NA responses are recommended.

Efficacy of the Rehabilitation Planning Consult for Survivors of Head and Neck Cancer: A Phase 2 Randomized Controlled Trial.

PURPOSE: Survivors of head and neck cancer may have significant lasting impairments and poor access to rehabilitation. To address this, our group developed and evaluated a rehabilitation planning consult (RPC). The RPC is conducted through an initial consultation and a single follow-up session with a rehabilitation professional. During the initial consultation, rehabilitation needs are determined and the survivor sets individualized goals and plans. They then implement their plans independently and are facilitated to evaluate and modify plans as necessary during the follow-up session. METHODS AND MATERIALS: We used a waitlist control design to compare the proportion of participants attaining a minimally importantly different change in quality of life (QOL) on the Short Form 36 Physical Health Summary Score from baseline to 3 months after study enrollment, between patients randomized to receive (n = 77) or wait 14 ± 3 weeks to receive (n = 76) the RPC. Additional outcomes included goal attainment indicators measured using the Brief Rehabilitation Assessment for Survivors of Head and Neck Cancer (BRASH). RESULTS: Of 153 participants recruited, 95 (62%) completed the intervention; 57 were in the immediate (RPC) group and 38 were in the waiting list control (WLC) group. No significant between-group differences were seen in the proportion of patients achieving a minimally important improvement (2.5 units) on the Physical Health Summary Score from baseline to 3 months after recruitment. No between-group differences were seen on any secondary QOL indicators. Among the 67 (RPC n = 42, WLC n = 22) participants who set individualized rehabilitation goals, BRASH scores on goal performance and satisfaction with goal performance were significantly better in the RPC group. CONCLUSIONS: Our results suggest that the RPC may provide benefit in patients' individualized domains of choice among those who set goals, without affecting overall QOL. Future work could refine the subset of patients who benefit and explore the optimal timing and intensity of the intervention.