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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., (© 2024. The Author(s).)

Objectives: The Short-Form HIV Disability Questionnaire (SF-HDQ) was developed to measure the presence, severity and episodic nature of health challenges across six domains. Our aim was to assess the sensibility, utility and implementation of the SF-HDQ in clinical practice., Design: Mixed methods study design involving semistructured interviews and questionnaire administration., Participants: We recruited adults living with HIV and HIV clinicians in Canada, Ireland and the USA., Methods: We electronically administered the SF-HDQ followed by a Sensibility Questionnaire (face and content validity, ease of usage, format) and conducted semistructured interviews to explore the utility and implementation of the SF-HDQ in clinical practice. The threshold for sensibility was a median score of > 5/7 (adults living with HIV) and > 4/7 (HIV clinicians) for ≥80% of items. Qualitative interview data were analysed using directed content analysis., Results: Median sensibility scores were > 5 (adults living with HIV; n=29) and > 4 (HIV clinicians; n=16) for 18/19 (95%) items. Interview data indicated that the SF-HDQ represents the health-related challenges of living with HIV and other concurrent health conditions; captures the daily episodic nature of HIV; and is easy to use. Clinical utility included measuring health challenges and change over time, guiding referral to specialists and services, setting goals, facilitating communication and fostering a multidisciplinary approach to care. Considerations for implementation included flexible, person-centred approaches to administration, and communicating scores based on personal preferences., Conclusions: The SF-HDQ possesses sensibility and utility for use in clinical settings with adults living with HIV and HIV clinicians in three countries., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: To understand what sports orthopedic surgeons (OS), primary care physicians (PCPs) with sports medicine training, and physical therapists (PTs) managing nonelite athletes with anterior cruciate ligament (ACL) injury tell their patients about their osteoarthritis (OA) risk., Methods: An electronic survey was distributed by the Canadian Academy of Sport and Exercise Medicine (PCPs, OS), the Sports and Orthopedic Divisions of the Canadian Physiotherapy Association (PTs), and to OS identified through the Royal College of Physicians and Surgeons and the Canadian Orthopaedic Association. The survey included 4 sections: demographics, factors discussed, timing of discussions, and discussion of risk factors and their management. Proportions or means with 95% confidence intervals were calculated., Results: A total of 501 health care professionals (HCPs) responded (98 PCPs, 263 PTs, and 140 OS). Of those responding, 70-77% of physicians reported always discussing OA risk, but only 35% of PTs did. All HCPs reported that patient activities perceived as detrimental to knee health, ACL reinjury, and simultaneous injury to other structures in the knee were most often the reason for discussing OA risk. OA risk was discussed at initial management post-injury (65-94%), with few discussing risk subsequently. Eighty percent of physicians and 99% of PTs indicated that PTs were suited to provide OA risk and management information., Conclusion: HCPs routinely managing people with ACL injury do not consistently discuss OA risk post-injury with them. Educational strategies for HCPs are urgently needed to develop care pathways inclusive of support for OA risk management following ACL injury., (© 2020, American College of Rheumatology.)

Objective: To report outcomes across three countries for patients with symptomatic knee or hip OA attending the evidence-based education and exercise therapy program Good Life with osteoArthritis from Denmark (GLA:D®)., Design: GLA:D® is a structured treatment program including 2-3 patient education sessions and 12 supervised exercise sessions delivered over 8 weeks by certified health care practitioners. The program was introduced in Denmark in 2013, in Canada 2015 and in Australia 2016. Absolute mean change in pain intensity, number of chair stands in 30 s, 40 m walk test time and Knee injury and Osteoarthritis Outcome Score (KOOS)/Hip dysfunction and Osteoarthritis Outcome Score (HOOS) QOL subscale scores from baseline to immediately after treatment were reported as means and 95 % CIs and proportion of responders for each country., Results: Patients from the three countries improved 26-33% in mean pain intensity, 8-12% in walking speed, 18-30% in chair stand ability and 12-26% in joint-related quality of life from baseline to immediately after treatment, with no clinically relevant differences between patients with hip and knee OA. These improvements correspond with moderate to large within-group effect sizes and 43-47 % of the patients experienced clinically relevant pain reductions., Conclusion: About half or more of patients across the three countries were categorized as responders for pain and objective function following the implementation of GLA:D®. These findings indicate positive patient outcomes associated with GLA:D® participation across varying health care systems from implementation of guideline-based patient education and exercise therapy for knee and hip OA., (Copyright © 2021 Osteoarthritis Research Society International. Published by Elsevier Ltd. All rights reserved.)

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.

Fitness coaches need to understand the needs of people living with HIV engaged in community-based exercise (CBE) to be competent in developing exercises programs with this population. Our aim was to understand coaches' experiences engaging in a CBE intervention with PLWH in an urban center in Canada. As part of a broader study, coaches supervised weekly hour-long individualized exercise sessions with PLWH over a six-month period. Using qualitative longitudinal methods, we interviewed coaches up to three times over six months. Transcribed interviews were analyzed cross-sectionally and longitudinally. Seven coaches participated in 15 interviews. Developing confidence, improving health and experiencing a sense of community were viewed as key benefits to PLWH by the coaches. Challenges included accommodating the episodic nature of HIV and ensuring they felt prepared to work with PLWH. Understanding the experiences of coaches engaged in CBE can assist in tailoring exercise programs to meet the needs of PLWH.

This qualitative longitudinal study examined the experiences of people living with HIV who engaged in a structured community-based exercise (CBE) program under the supervision of a fitness coach. Twenty people living with HIV were invited to participate in 3 semi-structured interviews over time. Participants engaged in exercise 3 times per week for 6 months with one weekly session supervised by a coach. Interviews were audio-recorded, transcribed verbatim and underwent longitudinal thematic analyses. Eleven participants were included representing a total of 30 interviews. Participants valued their experiences with the CBE program, particularly the motivation provided by the coach. Concerns about the environment, stigma and episodic health challenges affected their overall experience. To foster independence and promote self-management, health providers should consider these findings when encouraging CBE with people living with HIV. It is important to understand their goals and offer a variety of exercise options to meet their needs.

Objective: Adapt and evaluate the feasibility of implementing Good Life with osteoArthritis in Denmark (GLA:D TM ) in Canada for people with mild to severe hip/knee osteoarthritis., Methods: Patients triaged to non-surgical management participated in two education sessions and 12 supervised, neuromuscular exercise classes. We used the RE-AIM implementation framework evaluating outcomes of Reach, Effectiveness/Efficacy, Adoption, Implementation and Maintenance. Patients completed surveys pre-program and at 3 months follow-up. Program fidelity was evaluated at four observations against a priori criteria. We conducted semi-structured interviews with therapists post-program., Results: 72 patients consented to participate, 59 started the program and one withdrew on physician advice. The remaining 58 provided follow-up data. Mean age was 67 years; 78% were female and 52% had body mass index (BMI) >25. The effect of the program was demonstrated: 40% improvement in pain with 59% achieving a clinically important improvement of ≥2 points on the Numeric Pain Rating scale. Statistically significant improvement also occurred in the Hip disability/Knee injury and Osteoarthritis Outcome Score subscales. 24% reported increased physical activity. Program fidelity was demonstrated with all criteria met. Therapists emphasized that rolling recruitment allowed appropriate supervision and resulted in participants encouraging each other. 99% of participants indicated they benefitted from and were satisfied with the program and 90% reported using the knowledge daily. 52% were willing to pay >$250 Cdn for the program., Conclusion: GLA:D TM implementation was feasible in the Canadian context with results similar to those of >7,000 participants in Denmark. Implementation and evaluation of GLA:D TM Canada is now occurring nationally., (Copyright © 2017 Osteoarthritis Research Society International. Published by Elsevier Ltd. All rights reserved.)

Objective: This multilevel study examines access to rheumatologists for all arthritis and inflammatory arthritis, taking into account geographic availability of rheumatologists, access to primary care physicians (PCPs), and population characteristics (e.g., socioeconomic status [SES])., Methods: We analyzed data from the population (age ≥18 years) living in the 105 health planning areas in Ontario, Canada on visits to physicians for arthritis and musculoskeletal disorders. Using data from a survey of rheumatologists and Geographic Information System analysis, an index of geographic availability for rheumatologists was calculated, incorporating distance between the population and rheumatologist locations and the number of hours per week of rheumatologist care. Multilevel Poisson regression was used to examine factors associated with the rates of rheumatology visits for inflammatory arthritis and all arthritis., Results: Controlling for age and sex, the rheumatologist availability index was associated with visit rates for all arthritis, but not inflammatory arthritis. Patients living in areas with low access to PCPs or low SES were less likely to have office visits to rheumatologists for all arthritis and inflammatory arthritis., Conclusion: Besides potential deficiencies in rheumatology provision, there may be access barriers to rheumatology services, particularly for populations with low access to PCPs or low SES. This is of special concern for patients with inflammatory arthritis for whom rheumatologist care is necessary. In developing models of care for arthritis, this study points to the need to pay attention to areas with low PCP resources and areas of low SES, as well as the location and amount of rheumatology services available., (Copyright © 2015 by the American College of Rheumatology.)

The International Classification of Functioning, Disability and Health framework describes human functioning through body structure and function, activity and participation in the context of a person's social and physical environment. This work tested the temporal relationships of these components. Our hypotheses were: 1) there would be associations among physical impairment, activity limitations and participation restrictions within time; 2) prior status of a component would be associated with future status; 3) prior status of one component would influence status of a second component (e.g. prior activity limitations would be associated with current participation restrictions); and, 4) the magnitude of the within time relationships of the components would vary over time. Participants from Canada with primary hip or knee joint replacement (n = 931), an intervention with predictable improvement in pain and disability, completed standardized outcome measures pre-surgery and five times in the first year post-surgery. These included physical impairment (pain), activity limitations and participation restrictions. ICF component relationships were evaluated cross-sectionally and longitudinally using path analysis adjusting for age, sex, BMI, hip vs. knee, low back pain and mood. All component scores improved significantly over time. The path coefficients supported the hypotheses in that both within and across time, physical impairment was associated with activity limitation and activity limitation was associated with participation restriction; prior status and change in a component were associated with current status in another component; and, the magnitude of the path coefficients varied over time with stronger associations among components to three months post surgery than later in recovery with the exception of the association between impairment and participation restrictions which was of similar magnitude at all times. This work enhances understanding of the complexities of the ICF component relationships in evaluating disability over time. Further longitudinal studies including evaluation of contextual factors are required., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Self-rated health (SRH) is among the most frequently assessed health perceptions. The purpose of this study was to assess the tenability of the recently proposed distinctions of SRH, as a spontaneous assessment of overall health, or as an enduring self-concept. Individuals (n = 449) undergoing total joint replacement for hip or knee osteoarthritis in Toronto, Canada were followed over 6 months of recovery. Health questionnaires, completed pre-surgery, and at 3 and 6 months post-surgery, included measures of pain, physical function, sports/recreation, fatigue, anxiety, depression, social participation, passive/active recreation, and community access. Structural equation modeling was used for the analyses. SRH was found to be responsive to current and changing mental well-being throughout the six months of recovery. Current SRH strongly predicted future SRH. In this clinical sample undergoing significant changes in health status, SRH displayed both enduring and spontaneous features; evidence is provided that both operate simultaneously. SRH may prove to be a simple yet critical health measure for identifying individuals who would benefit most from targeted interventions for improving overall health., (Copyright © 2010 Elsevier Ltd. All rights reserved.)

The purpose of the study was to evaluate patient and system outcomes regarding older community-residing adults who participated in a rehabilitation program following HF surgery. The health care professionals on the rehabilitation unit in this feasibility study had never cared for such patients who were so frail, with multiple co-morbidities including cognitive impairment (CI). After an innovative model of care was developed and the staff trained in the novel approach to care, the unit opened for all patients living within the community who had fractured their hip, regardless of their CI. Of the 31 elderly patients consecutively admitted post-HF in this retrospective study, 18 were found to have CI postoperatively as determined by a Mini-Mental State Examination (MMSE) score < or = 23. There were no differences in length of stay (LOS), rehabilitation efficiency, and motor FIM gain scores between the two groups of patients. This feasibility retrospective study suggests that staff can learn how to care for patients with CI in rehabilitation settings, and that such clients can achieve outcomes comparable to those without CI in a setting dedicated to caring for patients with a HF.

People with primary bone cancer typically are young (usual age-at-onset 16-35 years old) and undergo arduous treatments. The current standard of care (tumour resection and limb reconstruction with or without chemotherapy) results in survival rates in excess of 60%, but also results in significant disability at a time when patients are choosing career paths, establishing their independence and embarking on new roles. To date, the nature of the relationship between experiences of osteosarcoma illness and experiences of vocation has remained unclear. This study sought to examine this relationship using qualitative narrative methodology. In-depth audiotaped interviews were conducted with 14 osteosarcoma survivors (8 men, 6 women) who were being treated at Mount Sinai Hospital, Toronto, Canada. Interview transcripts were analyzed for story typology and thematic content via constant comparison. Respondents reported engaging in three types of 'work': 'illness work', 'identity work' and 'vocational work'. Osteosarcoma illness represented a crisis for respondents, one which necessitated considerable illness work. Illness work was portrayed as all-consuming, whereby respondents were forced to stop vocational work for considerable periods. The illness crisis also precipitated 'identity work'. Respondents recounted a transformative process, of 'becoming other' to whom they had been prior to illness. As a result, respondents told of re-entering the vocational sphere with a different sense of themselves from when they left it. When patients return for surgical follow up, clinicians routinely ask, "So, are you back to work yet?" expecting simple 'yes/no' answers. This study suggests that the answer is instead highly complex, and that patients could be seen as having been 'working' all along. This study offers a re-conceptualization of 'work' and 'return to work' in the context of osteosarcoma, with implications for clinical and return-to-work practices.

Background: Since the advent of combination antiretroviral therapy, in developed countries HIV increasingly is perceived as a long-term illness. Individuals may experience health-related consequences of HIV and its associated treatments, a concept that may be termed disability. To date, a comprehensive framework for understanding the health-related consequences experienced by people living with HIV has not been developed. The purpose of this research was to develop a conceptual framework of disability from the perspective of adults living with HIV., Methods: We conducted four focus groups and 15 face-to-face interviews with 38 adults living with HIV. We asked participants to describe their health-related challenges, their physical, social and psychological areas of life affected, and impact on their overall health. We analyzed data using grounded theory techniques. We also conducted two validity check focus groups with seven returning participants., Results: Disability was conceptualized by participants as multi-dimensional and episodic characterized by unpredictable periods of wellness and illness. The Episodic Disability Framework consisted of three main components: a) dimensions of disability that included symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the course of living with HIV, b) contextual factors that included extrinsic factors (social support and stigma) and intrinsic factors (living strategies and personal attributes) that may exacerbate or alleviate disability, and c) triggers that initiate momentous or major episodes of disability such as receiving an HIV diagnosis, starting or changing medications, experiencing a serious illness, and suffering a loss of others., Conclusion: The Episodic Disability Framework considers the variable nature of disability, acknowledges uncertainty as a key component, describes contextual factors that influence experiences of disability, and considers life events that may initiate a major or momentous episode. This framework presents a new way to conceptualize disability based on the experience of living with HIV.

Background: To date, no researchers have investigated patient concerns in the first six weeks following primary total knee arthroplasty (TKA). An understanding of patient concerns at a time when physical therapists are involved in the treatment of these patients will aid clinicians in providing patient-centered care. Linking of items to the International Classification of Functioning, Disability and Health (ICF) allows for comparison and sharing of data amongst researchers, as the ICF is the accepted framework for evaluating disability in rehabilitation. The objective of this study was to identify patient concerns in the first six weeks following primary TKA and link these concerns to components of the ICF and map them to commonly used outcome measures., Methods: Individual interviews were conducted to identify patient concerns during their recovery following primary TKA. Concerns identified by patients were analysed for content and linked to the components of the ICF using the operational definitions of the ICF components. These concerns were mapped to the WOMAC, KOOS and Oxford Knee Scale., Results: Thirty patients (18 female) with an average age (SD) of 68.4 (11.1) years completed the study. Patients identified 32 concerns. Twenty-two percent (n = 7) of the concerns linked to Body Function and Structure, 47% (n = 15) to Activity, 13% (n = 4) to Participation, and 13% (n = 4) to the Environmental Factors component of the ICF. Six percent (n = 2) of the concerns did not link to the ICF. Of the 32 concerns identified by patients 14 mapped to the KOOS, 11 to the WOMAC and 4 to the Oxford Knee Scale., Conclusion: Patient concerns linked to four different components of the ICF indicating that patients are involved in or are thinking of multiple aspects of life even in this early phase of recovery. The KOOS was found to be the most appropriate for use based on the patients' perspective. However, less than half of the concerns identified by patients were covered by the KOOS, WOMAC or Oxford Knee Scale indicating that other existing measures that evaluate the concepts identified as important to patients should be considered when evaluating outcomes during this acute phase of recovery following primary TKA.

Objective: To evaluate how functional disability impacts on health related quality of life (HRQOL) of patients with extremity soft tissue sarcoma (STS) at 1 year post-surgery., Design and Setting: Survey of extremity STS patients pre-surgery and one-year post-treatment., Participants: 100 participants who were treated for extremity STS between 2001 and 2003 at four Canadian hospitals. Patients were over 16 years, non-metastatic at diagnosis, and had limb salvage surgery., Outcome Measures: Musculoskeletal Tumor Society Rating Scale (MSTS), a measure of impairment; Toronto Extremity Salvage Score (TESS), a measure of activity limitations; Reintegration to Normal Living Index (RNL), a measure of participation restrictions; and EQ-VAS, a measure of HRQOL., Results: After adjusting for demographic and clinical variables, impairment explained 54%, activity limitations explained 48%, and participation restrictions explained 61% of the variation in HRQOL. After adjustment, when all three functional measures were included in the model, only participation restrictions had a significant impact on HRQOL explaining 63% of the variation., Conclusion: Impairment and activity limitations affect the daily activities a patient can perform, but it is the restriction in participation of life roles and situations that has the greatest effect on patient's HRQOL.