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1.
Health Qual Life Outcomes ; 22(1): 38, 2024 May 14.
Article in English | MEDLINE | ID: mdl-38745165

ABSTRACT

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.


Subject(s)
Psychometrics , Humans , Surveys and Questionnaires/standards , Patient Preference , Quality of Life
2.
Clin J Pain ; 2024 Apr 15.
Article in English | MEDLINE | ID: mdl-38616343

ABSTRACT

BACKGROUND: Age and sex differences may exist in the frequency (incidence, prevalence) or symptoms of neuropathic pain (NP) and complex regional pain syndrome (CRPS) due to biopsychosocial factors (e.g., neurodevelopment, physiological and hormonal changes, psychosocial differences) that evolve through childhood and adolescence.2 Age and sex differences may have implications for evaluating screening and diagnostic tools and treatment interventions. OBJECTIVE: To map the existing literature on pediatric NP and CRPS with respect to age and sex distributions, and age and sex differences in symptomology and frequency. METHODS: A scoping literature review was conducted. Databases were searched from inception to January 2023. Data were collected on study design, setting, demographics, and age and sex differences in frequency and symptoms. RESULTS: Eighty-seven studies were included. Distribution of participants with CRPS (n=37 studies) was predominantly early adolescence (10-14 years) and female sex, while NP (n=42 studies) was most commonly reported throughout adolescence (10-19 years) in both sexes. Forty-one studies examined age and sex differences in frequency; 6 studies reported higher frequency in adolescence. Very few studies (n=11) examined differences in symptomology. DISCUSSION: Large epidemiological studies are required to further understand age and sex differences in frequency of pediatric NP and CRPS. Age and sex differences must be considered when evaluating screening and diagnostic tools and treatment interventions to ensure relevance and validity to both sexes and across ages. Validated tools will improve understanding of age- and sex-dependent differences in symptoms, pathophysiology, and psychosocial impact of pediatric NP and CRPS.

3.
BMC Infect Dis ; 24(1): 71, 2024 Jan 10.
Article in English | MEDLINE | ID: mdl-38200425

ABSTRACT

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.


Subject(s)
HIV Infections , Patient Reported Outcome Measures , Adult , United States , Humans , Ireland , Reproducibility of Results , Canada , United Kingdom
4.
Int J Radiat Oncol Biol Phys ; 118(3): 759-769, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-37820770

ABSTRACT

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.


Subject(s)
Head and Neck Neoplasms , Quality of Life , Humans , Survivors , Referral and Consultation
5.
Spine J ; 24(3): 424-434, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37918571

ABSTRACT

BACKGROUND CONTEXT: Existing degenerative cervical myelopathy (DCM) severity scales have significant shortcomings, creating a strong impetus for the development of a practical measurement tool with sound psychometric properties. PURPOSE: This work reports the item generation and reduction of the Cervical Myelopathy Severity Index (CMSI), a new DCM patient-reported outcome measure of symptoms and functional limitations. DESIGN: Prospective observational study. PATIENT SAMPLE: Adult DCM patients belonging to one of three distinct treatment groups: (1) observation cohort, (2) preoperative surgical cohort, (3) 6 to 12 months postoperative cohort. OUTCOME MEASURES: Patient-reported outcome measure of symptoms and functional limitations. METHODS: Item generation was performed using semi-structured patient focus groups emphasizing symptoms experienced and functional limitations. Readability was assessed through think-aloud patient interviews. Item reduction involved surveys of DCM patients with a spectrum of disease severity and board-certified spine surgeons experienced in the treatment of DCM. A priori criteria for item removal included: patient median importance/severity <2 (of 4), 30% or more no severity (response of zero), item severity correlations ≤ 0.80 (Spearman), item severity reliability (weighted kappa <0.60) based on a 2-week interval and clinician median importance <2 with retention of items with very high clinical importance. RESULTS: There were 42 items generated from a combination of specialist input and patient focus groups. Items captured sensorimotor symptoms and limitations related to upper and lower extremities as well as sphincter dysfunction. Ninety-eight patients (43, 30, 25 observation, pre- and postsurgery respectively) and 51 surgeons completed the assessment. Twenty-three items remained after application of median importance and severity thresholds and weighted kappa cutoffs. After elimination of highly correlated (>0.80) items and combining two similar items, the final CMSI questionnaire list included 14 items. CONCLUSIONS: The CMSI is a new DCM patient-reported clinical measurement tool developed using patient and clinician input to inform item generation and reduction. Future work will evaluate the reliability, validity, and responsiveness of the CMSI in relation to existing myelopathy measurement indices.


Subject(s)
Spinal Cord Diseases , Adult , Humans , Reproducibility of Results , Spinal Cord Diseases/diagnosis , Spinal Cord Diseases/surgery , Psychometrics , Patient Reported Outcome Measures , Prospective Studies , Cervical Vertebrae/surgery
6.
Res Sq ; 2023 Apr 05.
Article in English | MEDLINE | ID: mdl-37066168

ABSTRACT

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: 359 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.

7.
Arthritis Care Res (Hoboken) ; 75(5): 1140-1146, 2023 05.
Article in English | MEDLINE | ID: mdl-35587461

ABSTRACT

OBJECTIVE: To understand factors associated with pain intensity responder status following nonsurgical hip osteoarthritis (OA) intervention, according to sex. METHODS: Data were from individuals with hip OA participating in the Danish Good Life With Osteoarthritis in Denmark 8-week education and exercise program. The following factors were recorded at program entry: age; education; mental well-being; comorbidities; body mass index; symptoms in hip, knee, and low back; and program-specific factors including education sessions, former participant lectures, and supervised exercise sessions. Pain intensity was recorded at baseline and at month 3 (post-program) on a 0-100-mm visual analog scale. Response was defined as pain intensity improvement of ≥30% from baseline to post-program. Logistic regression was used and conducted separately in male and female subjects. RESULTS: The sample included 791 men and 2,253 women. Female subjects had a mean baseline pain score of 47.2 of 100 (95% confidence interval [95% CI] 46.4-48.1) and male subjects had a score of 41.7 (95% CI 40.3-43.1). By post-program, the proportion of pain responders was 50.4% among women and 45.8% among men (difference P = 0.025). Among women, program-specific factors (attending former participant lectures and more supervised exercise sessions) were positively associated with pain response, as were better mental well-being and fewer comorbidities, while symptoms in other joints/sites were associated with a decreased likelihood of response. Among men, program-specific factors were not associated with response, while better mental well-being and fewer comorbidities were associated with being a responder. CONCLUSION: Findings suggest that the influence of some factors on pain response differ for male and female subjects and point to a potential need for targeted approaches for men and women who may require different key messages/approaches from health care providers.


Subject(s)
Osteoarthritis, Hip , Osteoarthritis, Knee , Humans , Male , Female , Exercise Therapy , Patient Education as Topic , Pain
8.
PLoS One ; 17(12): e0278368, 2022.
Article in English | MEDLINE | ID: mdl-36454910

ABSTRACT

BACKGROUND: Initiation of anti-osteoporosis medications after hip fracture lowers the risk of subsequent fragility fractures. Historical biases of targeting secondary fracture prevention towards certain groups may result in treatment disparities. We examined associations of patient age, sex and race with anti-osteoporosis medication prescription following hip fracture. METHODS: A cohort of patients with a hip fracture between 2016-2018 was assembled from the American College of Surgeons National Surgical Quality Improvement Program registry. Patients on anti-osteoporosis medications prior to admission were excluded. Multivariable logistic regression was used to determine adjusted associations between patient age, sex and race and their interactions with prescription of anti-osteoporosis medications within 30 days of surgery. RESULTS: In total, 12,249 patients with a hip fracture were identified with a median age of 82 years (IQR: 73-87), and 67% were female (n = 8,218). Thirty days postoperatively, 26% (n = 3146) of patients had been prescribed anti-osteoporosis medication. A significant interaction between age and sex with medication prescription was observed (p = 0.04). Male patients in their 50s (OR:0.75, 95%CI:0.60-0.92), 60s (OR:0.81, 95%CI:0.70-0.94) and 70s (OR:0.89, 95%CI:0.81-0.97) were less likely to be prescribed anti-osteoporosis medication compared to female patients of the same age. Patients who belonged to minority racial groups were not less likely to receive anti-osteoporosis medications than patients of white race. INTERPRETATION: Only 26% of patients were prescribed anti-osteoporosis medications following hip fracture, despite consensus guidelines urging early initiation of secondary prevention treatments. Given that prescription varied by age and sex, strategies to prevent disparities in secondary fracture prevention are warranted.


Subject(s)
Hip Fractures , Osteoporosis , Humans , Female , Male , Aged , Aged, 80 and over , Infant , Retrospective Studies , Hip Fractures/prevention & control , Hip Fractures/surgery , Osteoporosis/complications , Osteoporosis/drug therapy , Registries , Drug Prescriptions
9.
MDM Policy Pract ; 7(2): 23814683221142267, 2022.
Article in English | MEDLINE | ID: mdl-36532295

ABSTRACT

Introduction. Generic preference-based instruments inadequately measure breast cancer (BrC) health-related quality-of-life preferences given advances in therapy. Our overall purpose is to develop the Breast Utility Instrument (BUI), a BrC-specific preference-based instrument. This study describes the selection of the BUI items. Methods. A total of 408 patients from diverse BrC health states completed the EORTC QLQ-C30 and BR45 (breast module). For each of 10 dimensions previously assessed with confirmatory factor analysis, we evaluated data fit to the Rasch model based on global model and item fit, including threshold ordering, item residuals, infit and outfit, differential item functioning (age), and unidimensionality. Misfitting items were removed iteratively, and the model fit was reassessed. From items fitting the Rasch model, we selected 1 item per dimension based on high patient- and clinician-rated item importance, breadth of item thresholds, and clinical relevance. Results. Global model fit was good in 7 and borderline in 3 dimensions. Separation index was acceptable in 4 dimensions. Item selection criteria were maximized for the following items: 1) physical functioning (trouble taking a long walk), 2) emotional functioning (worry), 3) social functioning (interfering with social activities), 4) pain (having pain), 5) fatigue (tired), 6) body image (dissatisfied with your body), 7) systemic therapy side effects (hair loss), 8) sexual functioning (interest in sex), 9) breast symptoms (oversensitive breast), and 10) endocrine therapy symptoms (problems with your joints). Conclusions. We propose 10 items for the BUI. Our next steps include assessing the measurement properties prior to eliciting preference weights of the BUI. Highlights: A previous confirmatory factor analysis established 10 dimensions of the European Organisation for Research and Treatment of Cancer (EORTC) core quality of life questionnaire (QLQ-C30) and its breast module (BR45).In this study, we selected 1 item per dimension based on fit to the Rasch model, patient- and clinician-rated item importance, breadth of item thresholds, and clinical relevance.These items form the core of the future Breast Utility Instrument (BUI).The future BUI will be a novel breast cancer-specific preference-based instrument that potentially will better reflect women's preferences in clinical decision making and cost utility analyses.

10.
BMJ Open ; 12(9): e062008, 2022 09 29.
Article in English | MEDLINE | ID: mdl-36175103

ABSTRACT

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.


Subject(s)
HIV Infections , Organizations , Adult , Canada , HIV Infections/diagnosis , Humans , Ireland , Surveys and Questionnaires
11.
PLoS One ; 17(2): e0262635, 2022.
Article in English | MEDLINE | ID: mdl-35120148

ABSTRACT

OBJECTIVES: Breast cancer (BrC) and its treatments impair health-related quality of life (HRQoL). Utility is a measure of HRQoL that includes preferences for health outcomes, used in treatment decision-making. Generic preference-based instruments lack BrC-specific concerns, indicating the need for a BrC-specific preference-based instrument. Our objective was to determine dimensions of the European Organisation for Research and Treatment of Cancer (EORTC) general cancer (QLQ-C30) and breast module (BR45) instruments, the first step in our development of the novel Breast Utility Instrument (BUI). METHODS: Patients (n = 408) attending outpatient BrC clinics at an urban cancer centre, and representing a spectrum of BrC health states, completed the QLQ-C30 and BR45. We performed confirmatory factor analysis of the combined QLQ-C30 and BR45 using mean-and variance-adjusted unweighted least squares estimation. The hypothesized factor model was based on clinical relevance, item distributions, missing data, item-importance, and internal reliability of dimensions. Models were evaluated based on global and item fit, local areas of strain, and likelihood ratio tests of nested models. RESULTS: Our final model had 10 dimensions: physical and role functioning, emotional functioning, social functioning, body image, pain, fatigue, systemic therapy side effects, sexual functioning and enjoyment, arm and breast symptoms, and endocrine therapy symptoms. Good overall model fit was achieved: χ2/df: 1.45, Tucker-Lewis index: 0.946, comparative fit index: 0.951, standardized root-mean-square residual: 0.069, root-mean-square error of approximation: 0.033 (0.030-0.037). All items had salient factor loadings (λ>0.4, p<0.001). CONCLUSIONS: We identified important BrC HRQoL dimensions to develop the BUI, a BrC-specific preference-based instrument.


Subject(s)
Breast Neoplasms
12.
J Orthop Trauma ; 36(6): e236-e242, 2022 06 01.
Article in English | MEDLINE | ID: mdl-34744152

ABSTRACT

OBJECTIVE: To (1) identify predictors of subsequent surgery after initial treatment of proximal humerus fractures (PHFs) and (2) generate valid risk prediction tools to predict subsequent surgery. METHODS: We identified patients ≥50 years with PHF from 2004 to 2015 using health data sets in Ontario, Canada. We used procedural codes to classify patients into treatment groups of (1) surgical fixation, (2) shoulder replacement, and (3) conservative. We used procedural and diagnosis codes to capture subsequent surgery within 2 years after fracture. We developed regression models for two-thirds of each group to identify predictors of subsequent surgery and the regression equations to develop risk tools to predict subsequent surgery. We used the final third of each cohort to evaluate the discriminative ability of the risk tools using c-statistics. RESULTS: We identified 20,897 patients with PHF, 2414 treated with fixation, 1065 with replacement, and 17,418 treated conservatively. Predictors of reoperation after fixation included bone grafting and nail or wire fixation versus plate fixation, whereas poor bone quality was associated with reoperation after initial replacement. In conservatively treated patients, more comorbidities were associated with subsequent surgery, whereas age 70+ and discharge home after presentation lowered the odds of subsequent surgery. The risk tools were able to discriminate with c-statistics of 0.75-0.88 (derivation) and 0.51-0.79 (validation). CONCLUSIONS: Our risk tools showed good to strong discriminative ability for patients treated conservatively and with fixation. These data may be used as the foundation to develop a clinically informative tool. LEVEL OF EVIDENCE: Prognostic Level III. See Instructions for Authors for a complete description of levels of evidence.


Subject(s)
Shoulder Fractures , Shoulder , Aged , Bone Plates , Fracture Fixation, Internal/adverse effects , Humans , Humerus/surgery , Ontario/epidemiology , Postoperative Complications/surgery , Shoulder Fractures/surgery , Treatment Outcome
13.
AIDS Res Ther ; 18(1): 87, 2021 11 19.
Article in English | MEDLINE | ID: mdl-34798881

ABSTRACT

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.


Subject(s)
COVID-19 , HIV Infections , Adult , Cross-Sectional Studies , Disability Evaluation , HIV Infections/drug therapy , HIV Infections/epidemiology , Humans , Male , Middle Aged , Pandemics , SARS-CoV-2 , Self Care , Surveys and Questionnaires
14.
J Int Assoc Provid AIDS Care ; 20: 23259582211046762, 2021.
Article in English | MEDLINE | ID: mdl-34668422

ABSTRACT

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.


Subject(s)
HIV Infections , Canada , Exercise , Exercise Therapy , Humans , Qualitative Research
15.
PLoS One ; 16(9): e0257639, 2021.
Article in English | MEDLINE | ID: mdl-34559851

ABSTRACT

PURPOSE: Our aim was to examine the impact of a community-based exercise (CBE) intervention on cardiorespiratory fitness, cardiovascular health, strength, flexibility, and physical activity outcomes among adults living with HIV. METHODS: We conducted a longitudinal intervention study with community-dwelling adults living with HIV in Toronto, Canada. We measured cardiopulmonary fitness (V̇O2peak (primary outcome), heart rate, blood pressure), strength (grip strength, vertical jump, back extension, push-ups, curl ups), flexibility (sit and reach test), and self-reported physical activity bimonthly across three phases. Phase 1 included baseline monitoring (8 months); Phase 2 included the CBE Intervention (6 months): participants were asked to exercise (aerobic, strength, balance and flexibility training) for 90 minutes, 3 times/week, with weekly supervised coaching at a community-based fitness centre; and Phase 3 included follow-up (8 months) where participants were expected to continue with thrice weekly exercise independently. We used segmented regression (adjusted for baseline age and sex) to assess the change in trend (slope) among phases. Our main estimates of effect were the estimated change in slope, relative to baseline values, over the 6 month CBE intervention. RESULTS: Of the 108 participants who initiated Phase 1, 80 (74%) started and 67/80 (84%) completed the intervention and 52/67 (77%) completed the study. Most participants were males (87%), with median age of 51 years (interquartile range (IQR): 45, 59). Participants reported a median of 4 concurrent health conditions in addition to HIV (IQR: 2,7). Participants attended a median of 18/25 (72%) weekly supervised sessions. Change in V̇O2peak attributed to the six-month Phase 2 CBE intervention was 0.56 ml/kg/min (95% Confidence Interval (CI): -1.27, 2.39). Significant effects of the intervention were observed for systolic blood pressure (-5.18 mmHg; 95% CI: -9.66, -0.71), push-ups (2.30 additional push-ups; 95% CI: 0.69, 3.91), curl ups (2.89 additional curl ups; 95% CI: 0.61, 5.17), and sit and reach test (1.74 cm; 95% CI: 0.21, 3.28). More participants engaged in self-reported strength (p<0.001) and flexibility (p = 0.02) physical activity at the end of intervention. During Phase 3 follow-up, there was a significant reduction in trend of benefits observed during the intervention phase for systolic blood pressure (1.52 mmHg/month; 95% CI: 0.67, 2.37) and sit and reach test (-0.42 cm/month; 95% CI: -0.68, -0.16). CONCLUSION: Adults living with HIV who engaged in this six-month CBE intervention demonstrated inconclusive results in relation to V̇O2peak, and potential improvements in other outcomes of cardiovascular health, strength, flexibility and self-reported physical activity. Future research should consider features tailored to promote uptake and sustained engagement in independent exercise among adults living with HIV. CLINICALTRIALS.GOV IDENTIFIER: NCT02794415. https://clinicaltrials.gov/ct2/show/record/NCT02794415.


Subject(s)
Exercise , Adult , Humans , Independent Living , Male , Middle Aged , Physical Fitness
16.
Res Sq ; 2021 Sep 14.
Article in English | MEDLINE | ID: mdl-34545356

ABSTRACT

BackgroundEvents 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 perspective 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. MethodsAdults 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. ResultsOf 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. ConclusionsPeople 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.

17.
Pain Rep ; 6(2): e945, 2021.
Article in English | MEDLINE | ID: mdl-34278164

ABSTRACT

INTRODUCTION: Trauma and compression are common causes of peripheral neuropathic pain (NP) refractory to conventional medical management (CMM). The role of perineural interventions in relieving this type of pain is unclear. OBJECTIVES: The objectives of this retrospective study were to determine the analgesic benefits of adding a combination of perineural local anesthetic and steroids (LA-S) to CMM compared with CMM alone in patients who had moderate-to-severe refractory NP after trauma to the ankle and the foot. METHODS: Health care records of 60 patients in exposed (3 injections of perineural LA-S at weekly intervals with CMM) and 60 in unexposed (CMM) cohorts were reviewed. Data on patient characteristics, pain, and mental and physical function were extracted at baseline and at the postintervention follow-up. Data were analyzed to evaluate analgesic benefit from the study interventions and the impact of baseline characteristics. RESULTS: Perineural LA-S with CMM cohort had lower pain numerical rating scale scores at 1 to 3 months after the intervention as compared to the CMM alone cohort (5.50 [interquartile range 4.00-7.00] and 7.00 [interquartile range 5.00-8.00], respectively; P < 0.01). However, multivariable analysis did not show an independent beneficial analgesic effect with the addition of perineural LA-S to CMM compared with CMM alone. A greater severity of preintervention catastrophizing (each unit increase in pain catastrophizing score increased pain score at follow-up by 0.04, 95% confidence interval: 0.01-0.07) was associated with reduction in the analgesic benefit. CONCLUSION: Perineural local anesthetic and steroid injections do not confer an analgesic benefit for trauma- or compression-related peripheral NP.

18.
J Int Assoc Provid AIDS Care ; 20: 2325958221995344, 2021.
Article in English | MEDLINE | ID: mdl-33611978

ABSTRACT

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.


Subject(s)
Community Health Services , Exercise Therapy , Exercise/psychology , HIV Infections/therapy , Adult , Canada , Female , HIV Infections/drug therapy , HIV Infections/psychology , Humans , Interviews as Topic , Longitudinal Studies , Male , Middle Aged , Program Evaluation , Qualitative Research , Quality of Life
19.
Health Qual Life Outcomes ; 19(1): 6, 2021 Jan 06.
Article in English | MEDLINE | ID: mdl-33407538

ABSTRACT

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.


Subject(s)
Disability Evaluation , HIV Infections/psychology , Patient Reported Outcome Measures , Psychometrics/methods , Surveys and Questionnaires , Adult , Canada , Disabled Persons/psychology , Female , Humans , Ireland , Male , Middle Aged
20.
Arthritis Care Res (Hoboken) ; 73(12): 1754-1762, 2021 12.
Article in English | MEDLINE | ID: mdl-32937005

ABSTRACT

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.


Subject(s)
Anterior Cruciate Ligament Injuries/complications , Disclosure/statistics & numerical data , Orthopedic Surgeons , Osteoarthritis, Knee/etiology , Physical Therapists , Canada , Cross-Sectional Studies , Humans , Risk Factors , Surveys and Questionnaires
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