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.

Research priorities in HIV, aging and rehabilitation: building on a framework with the Canada-International HIV and Rehabilitation Research Collaborative.

BACKGROUND: In 2016, the Canada-International HIV and Rehabilitation Research Collaborative established a framework of research priorities in HIV, aging and rehabilitation. Our aim was to review and identify any new emerging priorities from the perspectives of people living with HIV, clinicians, researchers, and representatives from community organizations. METHODS: We conducted a multi-stakeholder international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations. Stakeholders convened for a one-day Forum in Manchester, United Kingdom (UK) to discuss research priorities via a web-based questionnaire and facilitated discussions. We analyzed data using conventional content analytical techniques and mapped emerging priorities onto the foundational framework. RESULTS: Thirty-five stakeholders from the UK(n = 29), Canada(n = 5) and Ireland(n = 1) attended the Forum, representing persons living with HIV or representatives from community-based organizations(n = 12;34%), researchers or academics(n = 10;28%), service providers(n = 6;17%), clinicians(n = 4;11%); and trainees(n = 4;11%). Five priorities mapped onto the Framework of Research Priorities across three content areas: A-Episodic Health and Disability Aging with HIV (disability, frailty, social participation), B-Rehabilitation Interventions for Healthy Aging across the Lifespan (role, implementation and impact of digital and web-based rehabilitation interventions) and C-Outcome Measurement in HIV and Aging (digital and web-based rehabilitation health technology to measure physical activity). Stakeholders indicated methodological considerations for implementing digital and web-based rehabilitation interventions into research and practice and the importance of knowledge transfer and exchange among the broader community. CONCLUSION: Results highlight the sustained importance of the Framework of Research Priorities and provide further depth and areas of inquiry related to digital and web-based rehabilitation interventions and technology aging with HIV.

How the Term 'Self-Management' is Used in HIV Research in Low- and Middle-Income Countries: A Scoping Review.

This scoping review assessed how the term 'self-management' (SM) is used in peer-reviewed literature describing HIV populations in low- and middle-income countries (LMIC). This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. OVID Medline, Embase, CAB Abstracts, and EBSCO CINAHL, Scopus, and Cochrane Library were searched up to September 2021 for articles with SM in titles, key words, or abstracts. Two team members independently screened the titles and abstracts, followed by the full-text. A data extraction tool assisted with collecting findings. A total of 103 articles were included. Since 2015, there has been a 74% increase in articles that use SM in relation to HIV in LMIC. Fifty-three articles used the term in the context of chronic disease management and described it as a complex process involving active participation from patients alongside providers. Many of the remaining 50 articles used SM as a strategy for handling one's care by oneself, with or without the help of community or family members. This demonstrates the varied conceptualizations and uses of the term in LMIC, with implications for the management of HIV in these settings. Future research should examine the applicability of SM frameworks developed in high-income settings for LMIC.

Assessment of Walking Speed and Distance Post-Stroke Increases After Providing a Theory-Based Toolkit.

BACKGROUND AND PURPOSE: While underutilized, poststroke administration of the 10-m walk test (10mWT) and 6-minute walk test (6MWT) can improve care and is considered best practice. We aimed to evaluate provision of a toolkit designed to increase use of these tests by physical therapists (PTs). METHODS: In a before-and-after study, 54 PTs and professional leaders in 9 hospitals were provided a toolkit and access to a clinical expert over a 5-month period. The toolkit comprised a guide, smartphone app, and video, and described how to set up walkways, implement learning sessions, administer walk tests, and interpret and apply test results clinically. The proportion of hospital visits for which each walk test score was documented at least once (based on abstracted health records of ambulatory patients) were compared over 8-month periods pre- and post-intervention using generalized mixed models. RESULTS: Data from 347 and 375 pre- and postintervention hospital visits, respectively, were analyzed. Compared with preintervention, the odds of implementing the 10mWT were 12 times greater (odds ratio [OR] = 12.4, 95% confidence interval [CI] 5.8, 26.3), and of implementing the 6MWT were approximately 4 times greater (OR = 3.9, 95% CI 2.3, 6.7), post-intervention, after adjusting for hospital setting, ambulation ability, presence of aphasia and cognitive impairment, and provider-level clustering. Unadjusted change in the percentage of visits for which the 10mWT/6MWT was documented at least once was smallest in acute care settings (2.0/3.8%), and largest in inpatient and outpatient rehabilitation settings (28.0/19.9% and 29.4/23.4%, respectively). DISCUSSION AND CONCLUSIONS: Providing a comprehensive toolkit to hospitals with professional leaders likely contributed to increasing 10mWT and 6MWT administration during inpatient and outpatient stroke rehabilitation.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A390 ).

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.

Perspectives on ART adherence among Zambian adults living with HIV: insights raised using HIV-related disability frameworks.

Anti-retroviral treatment (ART) has improved the survival of people living with HIV in Africa. Living with chronic HIV comes with new health and functional challenges and the need to manage ART adherence. The Sepo Study applied disability frameworks to better understand living with chronic HIV while using ART. The study followed 35 people (18 women, 17 men) living with HIV and on ART 6 months or longer in private and public health facilities in Lusaka, Zambia over 18-months (2012-2015). A total of 99 in-depth interviews were conducted. Conventional content analysis and NVIVOv10 were applied to analyse the data. Participants were adhering to ART at the times of the interviews and therefore less likely to report major challenges with adherence. Three main themes emerged from the data related to adherence. Firstly, ART was regarded as "giving life", which underscored adherence. Secondly, all participants described strategies for to managehealth and functional limitations, which they attributed as side-effects or chronicity. Thirdly, participants described experiences of uncertainty, including the efficacy of new regimens, potential loss of functioning, risk of new health problems, and death. Long-term ART managment in Africa needs to integrate rehabilitation approaches to address functional limitations, uncertainties, strengthen and support for adherence.

Types of episodic disability among people living with HIV in Zambia.

HIV is increasingly recognized as a chronic illness which may result in episodic disability related to the effects of the virus, side effects of medication, co-morbidities and consequences of aging. Little is known about the episodic disability experiences of people living long-term with HIV in resource-limited countries, which is best understood by following people over time. This qualitative longitudinal study examined the episodic disability experiences and the applicability of four types of episodic disability among people living with HIV and on anti-retroviral therapy in Zambia. We interviewed 31 men and women living with HIV on 3 occasions at 6-month intervals (total of 93 interviews) examining the processes of change over time. We used disability models to inform the interviews exploring impairments/symptoms, activity limitations and participation restrictions. Longitudinal analyses of transcribed interviews confirmed the applicability of four types over time: stable, increasing disability, decreasing disability and significant fluctuations. Analyses highlighted the extent to which determinants of health contributed to the disability experienced. The use of disability models revealed the importance of environmental and social influences on disability and quality of life. The indicators of the type of episodic disability could be used clinically to help understand the nature and potential triggers of the episodes.

AIDSImpact special issue - broadening the lens: recommendations from rehabilitation in chronic disease to advance healthy ageing with HIV.

People living with HIV are ageing with a combination of physical, mental and social health challenges, known as disability. Although rehabilitation can address disability, the field is still emerging. Our aim was to identify similar disability experiences across complex chronic conditions and establish recommendations for future rehabilitation research and practice to advance healthy ageing with HIV. We conducted a consultation with 77 stakeholders from the United Kingdom, Canada, and Ireland with expertise in the fields of rehabilitation and HIV, cancer, cardiovascular disease, renal disease, or chronic obstructive pulmonary disease who attended a one-day symposium. We used facilitated discussions to identify how rehabilitation issues in complex chronic disease translate to people ageing with HIV, and prioritised recommendations for future practice and research. Disability issues experienced across HIV and other complex chronic diseases included: (i) frailty, (ii) uncertainty and worrying about the future ageing with complex chronic disease, (iii) mental health, (iv) pain, and (v) stigma. We highlight six recommendations for clinical practice and research to advance healthy ageing with HIV. Opportunities for cross-collaboration exist with other more established areas of chronic disease management and rehabilitation. Recommendations can be used to inform future HIV clinical practice and research in this emerging field.

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC).

BACKGROUND: People living with HIV are living longer, and can experience physical, mental and social health challenges associated with aging and multimorbidity. Rehabilitation is well positioned to address disability and maximize healthy aging. An international collaborative network, called the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), works to guide this emerging field. In this article, we report findings from CIHRRC's aim to identify emerging research priorities in HIV, aging and rehabilitation from the perspectives of people living with HIV, clinicians, researchers, representatives from community organizations and policy stakeholders. METHODS: We conducted a multi-stakeholder multi-method international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations to identify research priorities in HIV, aging and rehabilitation. Stakeholders identified research priorities during a one-day International Forum comprised of presentations and facilitated discussion. We collated and analyzed data using content analytical techniques, resulting in a framework of research priorities. RESULTS: Sixty-nine stakeholders from countries including Canada (n = 62; 90%), the United Kingdom (n = 5; 7%), United States (n = 1; 1%) and Australia (n = 1; 1%) attended the International Forum on HIV, Aging and Rehabilitation Research. Stakeholders represented community-based organizations (n = 20; 29%), academic institutions (n = 18; 26%), community or institutional healthcare organizations (n = 11; 16%), research or knowledge production organizations (n = 10; 14%), and organizations representing government or industry (n = 10; 14%). The Framework of Research Priorities in HIV, Aging and Rehabilitation includes seven research priorities: (1) nature, extent and impact of disability, concurrent health conditions and chronic inflammation with HIV; (2) prevalence, severity and impact of frailty; (3) community and social participation aging with HIV; (4) strategies for chronic disease management and healthy aging with HIV; (5) facilitators and barriers to access and engagement in, rehabilitation; (6) effectiveness of rehabilitation interventions for healthy aging with HIV; and (7) advancing development and use of patient reported outcome measures in HIV and aging. The Framework highlights methodological considerations to approach the priorities and the importance of knowledge translation and exchange to apply research knowledge into practice, programs and policy. CONCLUSIONS: These priorities offer a foundation for collaboration among international and multidisciplinary teams to advance the field of HIV, aging and rehabilitation in order to promote healthy aging with HIV.

Characterizing the disability experience among adults living with HIV: a structural equation model using the HIV disability questionnaire (HDQ) within the HIV, health and rehabilitation survey.

BACKGROUND: People aging with HIV can experience a variety of health challenges associated with HIV and multimorbidity, referred to as 'disability'. Our aim was to characterize the disability experience and examine relationships between dimensions of disability among adults living with HIV. METHODS: We performed a structural equation modeling analysis with data from the Canadian web-based HIV, Health and Rehabilitation Survey. We measured disability using the HIV Disability Questionnaire (HDQ), a patient-reported outcome (69 items) that measures presence, severity and episodic features of disability across six domains: 1) physical symptoms, 2) cognitive symptoms, 3) mental-emotional health symptoms, 4) difficulties carrying out day-to-day activities, 5) uncertainty and worrying about the future, and 6) challenges to social inclusion. We used HDQ severity domain scores to represent disability dimensions and developed a structural model to assess relationships between disability dimensions using path analysis. We determined overall model fit with a Root Mean Square Error of Approximation (RMSEA) of < 0.05. We classified path coefficients of ≥ 0.2-0.5 as a medium (moderate) effect and > 0.5 a large (strong) effect. We used Mplus software for the analysis. RESULTS: Of the 941 respondents, most (79%) were men, taking combination antiretroviral medications (90%) and living with two or more simultaneous health conditions (72%). Highest HDQ presence and severity scores were in the uncertainty domain. The measurement model had good overall fit (RMSEA= 0.04). Results from the structural model identified physical symptoms as a strong direct predictor of having difficulties carrying out day-to-day activities (standardized path coefficient: 0.54; p < 0.001) and moderate predictor of having mental-emotional health symptoms (0.24; p < 0.001) and uncertainty (0.36; p < 0.001). Uncertainty was a strong direct predictor of having mental-emotional health symptoms (0.53; p < 0.001) and moderate direct predictor of having challenges to social inclusion (0.38; p < 0.001). The relationship from physical and cognitive symptoms to challenges to social inclusion was mediated by uncertainty, mental-emotional health symptoms, and difficulties carrying out day-to-day activities (total indirect effect from physical: 0.22; from cognitive: 0.18; p < 0.001). CONCLUSIONS: Uncertainty is a principal dimension of disability experienced by adults with HIV. Findings provide a foundation for clinicians and researchers to conceptualize disability and identifying areas to target interventions.

Internationally educated occupational therapists transitioning to practice in Canada: A qualitative study.

BACKGROUND/AIM: While internationally educated occupational therapists (IEOTs) may assist Western countries in addressing workforce shortages, their transition to practice can be difficult. Provincial and national levels of government in Canada have funded initiatives to address the barriers experienced by IEOTs. The purpose of this study is to identify the key forces shaping the experiences of IEOTs transitioning to practice in Canada. METHODS: An interpretive description approach was taken to interview 11 IEOTs who graduated from the Occupational Therapy Examination and Practice Preparation (OTepp) program. Data analysis was guided by the theoretical scaffolding of the occupational therapy profession. Two team members, who are also occupational therapists, developed codes and categories independently and then through discussion reached a higher level of interpretation. RESULTS: The experiences of IEOTs in Canada were shaped by two key forces: Realising that more than exam preparation is required and the impact of previous person, environment and occupation transactions. Participants underestimated their learning needs related to their transition to Canadian practice. As they engaged in the OTepp program, they realised that their learning extended beyond that required for the national certification exam. Also, the extent to which the participant (person), previous context (environment) and previous practice (occupation) were similar to Canadian therapists, influenced IEOTs' performance in OTepp and their overall transition to practice. The Person-Environment-Occupation (PEO) model provided a framework to contextualise this theme. CONCLUSION: IEOTs will benefit from individualised learning needs assessments and education plans to address their specific needs. At an international level, the occupational therapy profession must engage in dialogue about the differences between education programs and the resulting implications for the profession. More research is also needed to understand the experiences of IEOTs who withdraw from or do not engage in formal supports.

Effect of visual stimuli of pain on empathy brain network in people with and without Autism Spectrum Disorder.

The extent to which affective empathy is impaired in Autism Spectrum Disorder (ASD) remains unclear, as some-but not all-previous neuroimaging studies investigating empathy for pain in ASD have shown similar activation levels to those of neurotypicals individuals. These inconsistent results could be due to the use of different empathy-eliciting stimuli. While some studies used pictures of faces exhibiting a painful expression, others used pictures of limbs in painful situations. In this study, we used fMRI to compare activation in areas associated with empathy processing (empathy network) for these two types of stimuli in 31 participants (16 with ASD, 15 controls). We found a group difference in the inferior frontal gyrus (IFG) and the thalamus when participants viewed stimuli of limbs in painful situations, but not when they viewed face stimuli with a painful expression. Both groups of participants activated their empathy network more when viewing pictures of limbs in painful situations than when viewing pictures of faces with a painful expression; this increased activation for limbs versus faces was significantly enhanced in controls relative to ASD participants, especially in the secondary somatosensory cortex (SII). Our findings suggest that empathy defect of people with ASD is contingent upon the type of stimuli used, and may be related to the level of Mirror Neuron System involvement, as brain regions showing group differences (IFG, SII) underlie embodiment. We discuss the potential clinical implications of our findings in terms of developing interventions boosting the empathetic abilities of people with ASD.

Optimism alongside new challenges: using a rehabilitation framework to explore experiences of a qualitative longitudinal cohort of people living with HIV on antiretroviral treatment in Lusaka, Zambia.

Previous research has demonstrated increased comorbidities related to the chronic effects of HIV. Rehabilitation science offers a useful approach for studying chronic illness. This longitudinal qualitative study used a rehabilitation science approach to explore the experiences over time of women and men living with HIV and on antiretroviral therapy (ART) in the high HIV-prevalence setting of Lusaka, Zambia. Thirty-five participants participated in a total of 99 in-depth interviews from 2012 to 2015. The central pattern that emerged across the participants' narratives was the paradoxical experience of profound optimism alongside significant new challenges. Participants' stories of hopefulness in the face of ongoing struggles played out in three interconnected themes: (1) impacts on my body and life; (2) interventions I am grateful to have and new interventions I need; and (3) stigma reduced and created by ART. Results reflected the ups and downs of life with HIV as a chronic illness. Participants, whilst committed to and healthier on ART, typically experienced multiple physical, psychological and sensory impairments that varied in type, severity and trajectory. Participants valued improved relationships enabled by ART, but yearned for support for living long-term with HIV. Frequently participants reflected that their needs were overlooked related to managing side-effects, exercise, family planning and healthy sexuality. ART strengthened acceptance by self and others through improved health and productivity and through becoming a source of support for others. However, being on ART also led to stigma, driven by persistent associations with sickness, death, lack of productivity and uncertainty. This study points to shortcomings in the current focus of HIV care in Zambia and the region, which centres on initiating and adhering to ART. Findings call for evolution of the HIV care continuum to embrace a more holistic and long-term approach to living with HIV as a chronic and episodic condition.

Reliability and validity of a new HIV-specific questionnaire with adults living with HIV in Canada and Ireland: the HIV Disability Questionnaire (HDQ).

BACKGROUND: Our aim was to assess internal consistency reliability, construct validity, and test-retest reliability of the HDQ with adults living with HIV in Canada and Ireland. METHODS: We recruited adults 18 years of age or older living with HIV from hospital clinics and AIDS service organizations in Canada and Ireland. We administered the HDQ paired with reference measures (World Health Organization Disability Assessment Schedule, SF-36 Questionnaire, Medical Outcomes Study Social Support Survey), and a demographic questionnaire. We calculated HDQ disability presence, severity and episodic scores (scored from 0-100). We calculated Cronbach's alpha and Intraclass Correlation Coefficients (ICC) (Canada only) for the disability severity and episodic scores and considered coefficients >0.80 and >0.70 as acceptable, respectively. To assess construct validity, we tested 40 a priori hypotheses of correlations between scores on the HDQ and reference measures and two known group hypotheses comparing HDQ presence and severity scores based on age and comorbidity. We considered acceptance of at least 75% of hypotheses as demonstrating support for construct validity. RESULTS: Of the 235 participants (139 Canada; 96 Ireland), the majority were men (74% Ireland; 82% Canada) and were taking antiretroviral therapy (88% Ireland; 91% Canada). Compared with Irish participants, Canadian participants were older (median age: 48 versus 41 years) and reported living with a higher median number of comorbidities (4 versus 1). Cronbach's alpha for Irish and Canadian participants were 0.97 (95% confidence interval (CI): 0.97-0.98) and 0.96 (95 % CI: 0.95-0.98), respectively, for the severity scale and 0.98 (95 % CI: 0.97-0.98) and 0.96 (95 % CI: 0.95-0.98), respectively, for the episodic scale. Of the 40 construct validity correlation hypotheses, 32 (80%) and 22 (55%) were supported among the Canadian and Irish samples respectively; both (100%) known group hypotheses were also supported. ICC values for Canadian participants ranged from 0.80 (95 % CI: 0.71, 0.86) in the cognitive domain to 0.89 (95 % CI: 0.83, 0.92) in the social inclusion domain. CONCLUSIONS: The HDQ demonstrates internal consistency reliability and a variable degree of construct validity when administered to adults living with HIV in Canada and Ireland. The HDQ demonstrates test-retest reliability when administered to adults with HIV in Canada. Further validation of the HDQ outside of Canada is needed.

Assessing changes over time in healthcare provider performance: addressing regression to the mean over multiple time points.

In recent years, the evaluation of healthcare provider performance has become standard for governments, insurance companies, and other stakeholders. Often, performance is compared across providers using indicators in one time period, for example a year. However it is often important to assess changes in the performance of individual providers over time. Such analyses can be used to determine if any providers have significant improvements, deteriorations, unusual patterns or systematic changes in performance. Studies which monitor healthcare provider performance in this way have to date typically been limited to comparing performance in the most recent period with performance in a previous period. It is also important to consider a longer-term view of performance and assess changes over more than two periods. In this paper, we develop test statistics that account for variable numbers of prior performance indicators, and show that these are particularly useful for assessing consecutive improvements or deteriorations in performance. We apply the tests to coronary artery bypass graft mortality rates in New York State hospitals, and mortality data from Australian and New Zealand intensive care units. Although our applications are to medical data, the new tests have broad application in other areas.

Identifying unusual performance in Australian and New Zealand intensive care units from 2000 to 2010.

BACKGROUND: The Australian and New Zealand Intensive Care Society (ANZICS) Adult Patient Database (APD) collects voluntary data on patient admissions to Australian and New Zealand intensive care units (ICUs). This paper presents an in-depth statistical analysis of risk-adjusted mortality of ICU admissions from 2000 to 2010 for the purpose of identifying ICUs with unusual performance. METHODS: A cohort of 523,462 patients from 144 ICUs was analysed. For each ICU, the natural logarithm of the standardised mortality ratio (log-SMR) was estimated from a risk-adjusted, three-level hierarchical model. This is the first time a three-level model has been fitted to such a large ICU database anywhere. The analysis was conducted in three stages which included the estimation of a null distribution to describe usual ICU performance. Log-SMRs with appropriate estimates of standard errors are presented in a funnel plot using 5% false discovery rate thresholds. False coverage-statement rate confidence intervals are also presented. The observed numbers of deaths for ICUs identified as unusual are compared to the predicted true worst numbers of deaths under the model for usual ICU performance. RESULTS: Seven ICUs were identified as performing unusually over the period 2000 to 2010, in particular, demonstrating high risk-adjusted mortality compared to the majority of ICUs. Four of the seven were ICUs in private hospitals. Our three-stage approach to the analysis detected outlying ICUs which were not identified in a conventional (single) risk-adjusted model for mortality using SMRs to compare ICUs. We also observed a significant linear decline in mortality over the decade. Distinct yearly and weekly respiratory seasonal effects were observed across regions of Australia and New Zealand for the first time. CONCLUSIONS: The statistical approach proposed in this paper is intended to be used for the review of observed ICU and hospital mortality. Two important messages from our study are firstly, that comprehensive risk-adjustment is essential in modelling patient mortality for comparing performance, and secondly, that the appropriate statistical analysis is complicated.

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.

Aging with HIV and disability: the role of uncertainty.

Due to advances in treatment, people with HIV are living longer and developing disabilities related to the virus, adverse side effects of medications, and aging. Illness-related uncertainty has been shown to contribute to disablement; however, there is little understanding of the uncertainties related to aging with HIV. The purpose of this research was to describe the contribution of uncertainty to the disability experienced by older adults living with HIV. Forty-nine men and women living with HIV and 50 years or older participated in in-depth qualitative interviews exploring various aspects of social participation and disability. Transcriptions of the interviews were analyzed using a grounded theory approach. Age-related uncertainties were described in the following themes: source of health challenge; health providers' age-related knowledge and skills; financial uncertainty; transition to retirement; appropriate long-term housing, and uncertainty over who would care for them. While not directly attributable to aging, the episodic nature of HIV left many with uncertainties related to when their next episode of illness would occur and often resulted in an inability to plan in advance. Results highlight the need to focus on the notion of successful and positive aging with the view to identifying effective interventions that reduce disability and enhance the overall health of older adults with HIV. This work builds on previous studies highlighting the role of uncertainty in the disability experience by identifying age-related components specific to older adults aging with HIV.

Advancing research and practice in HIV and rehabilitation: a framework of research priorities in HIV, disability and rehabilitation.

BACKGROUND: HIV increasingly is experienced as a complex chronic illness where individuals are living longer with a range of physical, cognitive, mental and social health-related challenges associated with HIV, comorbidities and aging, a concept that may be termed 'disability'. Rehabilitation such as physical therapy and occupational therapy can help address disability and has the potential to improve quality of life in people living with HIV. Hence, the role for rehabilitation in the context of HIV, aging and comorbidities is emerging. Our aim was to establish a framework of research priorities in HIV, disability and rehabilitation. METHODS: We convened people living with HIV, clinicians, researchers, service providers, representatives from community-based organizations and policy and funding stakeholders to participate in the first International Forum on HIV and Rehabilitation Research. We conducted a multi-stakeholder consultation to identify current and emerging issues in HIV, disability and rehabilitation. Data were collated and analyzed using content analytical techniques. RESULTS: Ninety-two participants attended the Forum from Canada, United Kingdom (UK), Ireland and the United States. Situated within three overarching themes (episodic health and disability across the life course; rehabilitation; and methodological advances), the Framework of Research Priorities in HIV, Disability and Rehabilitation includes six research priorities: 1) episodic health and disability; 2) aging with HIV across the life course; 3) concurrent health conditions; 4) access to rehabilitation and models of rehabilitation service provision; 5) effectiveness of rehabilitation interventions; and 6) enhancing outcome measurement in HIV and rehabilitation research. The Framework includes methodological considerations and environmental and personal contextual factors (or lenses) through which to approach research in the field. Knowledge translation should be implemented throughout the development and application of research knowledge to inform HIV clinical practice, programming and policy. CONCLUSIONS: These priorities highlight the emerging priorities of living long-term with HIV and outline a plan for HIV and rehabilitation research in resource-rich countries such as the UK and Canada.

Considerations for conducting Web-based survey research with people living with human immunodeficiency virus using a community-based participatory approach.

BACKGROUND: Web or Internet-based surveys are increasingly popular in health survey research. However, the strengths and challenges of Web-based surveys with people living with human immunodeficiency virus (HIV) are unclear. OBJECTIVE: The aim of this article is to describe our experience piloting a cross-sectional, Web-based, self-administered survey with adults living with HIV using a community-based participatory research approach. METHODS: We piloted a Web-based survey that investigated disability and rehabilitation services use with a sample of adults living with HIV in Canada. Community organizations in five provinces emailed invitations to clients, followed by a thank you/reminder one week later. We obtained survey feedback in a structured phone interview with respondents. Participant responses were transcribed verbatim and analyzed using directed content analysis. RESULTS: Of 30 people living with HIV who accessed the survey link, 24/30 (80%) initiated and 16/30 (53%) completed the survey instrument. A total of 17 respondents participated in post-survey interviews. Participants described the survey instrument as comprehensive, suggesting content validity. The majority (13/17, 76%) felt instruction and item wording were clear and easy to understand, and found the software easy to navigate. Participants felt having a pop-up reminder directing them to missed items would be useful. CONCLUSIONS: Strengths of implementing the Web-based survey included: our community-based participatory approach, ease of software use, ability for respondents to complete the questionnaire on one's own time at one's own pace, opportunity to obtain geographic variation, and potential for respondent anonymity. Considerations for future survey implementation included: respondent burden and fatigue, the potentially sensitive nature of HIV Web-based research, data management and storage, challenges verifying informed consent, varying computer skills among respondents, and the burden on community organizations. Overall, results provide considerations for researchers conducting community-based participatory Web-based survey research with people living with HIV.