McMaster Toronto Arthritis Patient Preference Disability Questionnaire Research Articles

Impact de l’angiœdème héréditaire sur les activités de la vie quotidienne, la sphère émotionnelle et la qualité de vie des patients

IntroductionHereditary angioedema (HAE) is characterized by recurrent attacks of swelling of various locations and severity. An impaired quality of life of patients with HAE has been reported by several studies. We aimed at examining the overall impact of the disease in patients followed for type I HAE, particularly its impact on daily life activities, emotions and quality of life. MethodsA questionnaire was distributed to patients consulting for type I HAE, collecting demographics, disease characteristics, impact on professional life, Hospital Anxiety and Depression score (HAD), SF-36 score and the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR). ResultsThe 33 patients included reported an average of 5.17 attacks over the last year. Stress was the main trigger A long-term treatment was reported by 58% of patients, 72% received specific treatment in the event of a serious attack. Sick days were reported by 33% of patients during their studies, and by 34% during work. One patient suffered from depressive symptoms and ten from anxious symptoms, according to the HAD score. The areas most impacted on the SF-36 score were general health and vitality. The mean score for MACTAR was low. ConclusionHAE still has a significant impact on the daily and emotional lives of patients, despite the availability of prophylactic and crisis treatments.

Patient-preference disability assessment for disabling knee osteoarthritis: Validity and responsiveness of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire

BackgroundThe McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) measurement of function may be more comprehensive and add useful information about disability than traditional fixed-item questionnaires, especially about issues that really matter to the patient, for developing personalized medicine. ObjectivesWe aimed to assess priorities in disability and restriction in participation in patients with disabling knee osteoarthritis (OA) by the MACTAR and evaluate its validity and responsiveness. MethodsWe evaluated 127 in- and outpatients with knee OA in two tertiary care teaching hospitals between August 2010 and July 2012 by using the MACTAR, the Western Ontario and McMaster Universities Osteoarthritis Index, Lequesne scale, Fear Avoidance Beliefs Questionnaire, a life satisfaction score and pain, global assessment of disease activity and functional impairment scores on a numerical rating scale. Validity was assessed by Pearson correlation and responsiveness by the standardized response mean (SRM) and effect size (ES). ResultsPatients ranked 35 different activities by the MACTAR; the 3 domains of the International Classification of Functioning, Disability and Health most often identified were mobility (cited 233 times, 52.3%); community, social and civic life (cited 122 times, 27.4%); and domestic life (cited 64 times, 14.4%). The MACTAR score was best correlated with functional impairment (r=0.5). Convergent and divergent validity was as expected. In all, 108 patients completed a 6-month follow-up evaluation: 27 patients shifted their priorities at 6 months, for a decrease in SRM and ES. The SRM (0.64) and ES (0.92) for the MACTAR without shifts in priorities were the highest among the outcome measures tested; for patients considering their condition improved, the values were 0.85 and 1.17, respectively. ConclusionsFor assessing priorities in disability and restriction in participation among patients with knee OA, the MACTAR has acceptable validity and responsiveness.

Disabilities of importance for patients to improve – using a patient preference tool in rheumatoid arthritis

Purpose: To investigate, using the McMaster Toronto Arthritis patient preference disability questionnaire (MACTAR), disabilities most important to improve in Swedish patients with rheumatoid arthritis (RA) and to compare these with the pre-defined activities in the International Classification of Functioning (ICF) comprehensive core set for RA and the Stanford Health Assessment Questionnaire (HAQ). Also to categorize patient preference selected disabilities using the ICF, to correlate the MACTAR score to RA core set measures and to evaluate the MACTAR’s test–retest reliability. Methods: 45 patients with RA (median (md) age 59 years, diagnosis duration md 10 years) were included. Assessments included disease activity score (DAS28), timed-stands test (TST), shoulder function assessment (SFA), visual analogue scale for pain (VAS), HAQ, patients’ global assessment of well-being (PGA) and the MACTAR. Results: 58 disabilities were identified of which 17 were identified by at least 5 patients. 47% of them were represented in the Comprehensive ICF RA core set and 53% in the HAQ. 16/17 were categorized in the ICF activities and participation component. Correlations between the MACTAR and other measures were: DAS28 (rs −0.65), TST (rs −0.19), SFA (rs 0.38), VAS (rs −0.61), HAQ (rs −0.51) and PGA (rs −0.61). Weighted κ was 0.59. Conclusions: Half of the disabilities patients with RA identified by use of the MACTAR are not evaluated in the Comprehensive ICF core set for RA or the HAQ. MACTAR has moderate test–retest reliability. MACTAR can be considered to be used in addition to traditional RA outcomes and may potentially improve clinical assessment of patients with RA.Implications for RehabilitationRA has an impact on personal life areas.The MACTAR helps identify individual disease-related disabilities of importance to improve.The MACTAR provides an opportunity for individualized goal-setting in rehabilitation and can thus promote adherence in rehabilitation.MACTAR may potentially improve clinical assessment for patients with RA.

McMaster-Toronto Arthritis Patient Preference Disability Questionnaire Sensitivity to Change in Low Back Pain: Influence of Shifts in Priorities

ObjectiveTo assess the sensitivity to change of the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) in chronic low back pain (CLBP) and shifts in patients' priorities of disabling activities over time.MethodsA prospective longitudinal survey of 100 patients (38 males) with CLBP in a tertiary care teaching hospital. Evaluation at baseline and 6 months by the MACTAR, Quebec Back Pain Disability Questionnaire (QUEBEC), Hospital Anxiety and Depression scale (HAD), Fear-Avoidance Beliefs Questionnaire (FABQ), Coping Strategies Questionnaire (CSQ), and pain and handicap visual analogue scales (VASs). Patients' perceived improvement or worsening of condition was assessed at 6 months. Effect size (ES) and Standardized response mean (SRM) and effect size (ES) were used to evaluate sensitivity to change of the MACTAR.ResultsThe MACTAR SRM and ES values (SRM = 0.25; ES = 0.37) were among the highest for the instruments evaluated. For patients considering their condition as improved, the SRM was 0.66 and the ES 1. The 3 disability domains, classified by the International Classification of Functioning, Disability and Health (ICF), most often cited as priorities at baseline remained the most cited at follow-up: mobility (40.9% of patients); community, social and civic life (22.7%); and domestic life (22.4%). At 6 months, 48 patients shifted their priorities, for a decrease in MACTAR SRM and ES values for patients considering their condition improved and an increase in these values for those considering their condition deteriorated.ConclusionsAlthough the MACTAR has similar sensitivity to change as other outcome measures widely used in CLBP, shifts in patient priorities over time are common and influence scores and sensitivity to change.

Sensitivity to Change in Systemic Sclerosis of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR): Shift in Patient Priorities Over Time

To assess the sensitivity to change of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) in systemic sclerosis (SSc) and a shift in patient priorities over time. We assessed 49 patients with SSc (8 men) using the MACTAR in a prospective longitudinal study twice or more during annual meetings of the French patient association from 2004 to 2007. Patient-perceived improvement or worsening regarding health status was recorded. Sensitivity to change was assessed by the effect size (ES) and the standardized response mean (SRM) of the MACTAR. The MACTAR global score was significantly increased at followup in the whole group of patients, and the ES and SRM values were -0.37 and -0.34, respectively. These values were similar to those observed for widely used outcome measures for SSc such as the Health Assessment Questionnaire. As defined by the International Classification of Functioning, Disability and Health, the 3 disability domains most often cited at baseline were mobility (7 activities, cited 17 times; 33.3% of patients), domestic life (4 activities, cited 17 times; 33.3% of patients), and community, social and civic life (3 activities, cited 10 times; 19.6% of patients). At followup, 40 patients had changed their first priority and 34 changed 3 priorities. The evolution in MACTAR global score over time for patients with SSc reflects longterm general feelings of deterioration. However, shifts in patient priorities are common and may influence the sensitivity to change of the instrument.

Patient preferences before and after total knee arthroplasty

Objective Patients before total joint arthroplasty vary in the spectrum and importance of their concerns. The objectives of this study were to evaluate the psychometric properties of the Knee Patient-Specific Index (KPSI) and to determine the type and importance of patients' concerns before and after knee arthroplasty. Study Design and Setting A cohort of 119 patients scheduled for elective primary (or revision) total knee arthroplasty were interviewed at two tertiary care teaching hospitals. Patients also completed the Knee Society Scale (KSS), the Short Form 36, the Western Ontario and McMaster University Osteoarthritis Index (WOMAC), and the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR). Results Patients improved after total knee arthroplasty in all 42 symptoms and physical limitations, except crouching/kneeling and walking up and down stairs. Patients' summated concerns correlated with the WOMAC pain subscale (ranging from 0.72 to 0.79), WOMAC physical function subscale (ranging from 0.72 to 0.76), and KSS (ranging from 0.28 to 0.39). The summated responses changed after knee arthroplasty as demonstrated by the standardized response mean of 1.1. Conclusions The KPSI captures individual patient unique preferences for patients undergoing total knee arthroplasty. Patients improved in virtually all aspects of their symptoms and function after surgery, with the exception of crouching/kneeling and knee feeling hot.

Patient-Preference Disability Assessment for Disabling Chronic Low Back Pain

A cross sectional survey. OBJECTIVE.: To assess patient priorities in disability and restriction in participation with disabling chronic low back pain (CLBP) by use of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) and to compare this questionnaire with other outcome measures widely used in this situation. Disability and participation restriction are widely assessed in CLBP but do not account for patient priorities. Knowing what is important to patients could be useful to help form treatment goals and plans. A total of 150 patients hospitalized in a tertiary care teaching hospital for the management of CLBP were enrolled in the study. Evaluation was by the MACTAR, the Quebec Back Pain Disability Questionnaire (QUEBEC), the Hospital Anxiety and Depression scale, the Fear-Avoidance Beliefs Questionnaire, the Coping Strategies Questionnaire, and pain and handicap visual analog scales. Correlations between the MACTAR score and scores for other scales were analyzed by the Spearman coefficient. On the MACTAR, patients with CLBP cited as most important 3 disability domains classified by the International Classification of Functioning, Disability, and Health: mobility (n = 23 activities, 165 times, 33% of the patients); community, social, and civic life (n = 7 activities, 138 times, 27.6% of the patients); and domestic life (n = 10 activities, 123 times, 24.6% of the patients). Patients ranked first in importance 37 different activities, especially sport (n = 29 times; 19.3% of the patients), shopping (n = 14; 9.3% of the patients), and walking (n = 13; 8.7% of the patients). The MACTAR score was correlated moderately with visual analog scale handicap (r = 0.51), weakly with the QUEBEC score (r = 0.40), and not at all with Hospital Anxiety and Depression scale, Fear-Avoidance Beliefs Questionnaire, and Coping Strategies Questionnaire scores. For assessing priorities in disability and participation restriction among patients with CLBP, the MACTAR has acceptable construct validity. The weak correlation between QUEBEC and MACTAR scores suggests that the latter scale adds useful information for assessing the health priorities of disabled CLBP patients.

Patient preference disability questionnaire in systemic sclerosis: A cross‐sectional survey

To assess patient priorities concerning disability in systemic sclerosis (SSc). A total of 150 SSc patients (22 men) fulfilling the American College of Rheumatology and/or LeRoy and Medsger criteria for SSc were evaluated by the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR), Karnofsky performance status (KPS), Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Hospital Anxiety and Depression Scale, Mouth Handicap in SSc (MHISS) scale, and global perception regarding their health status. Correlations between scores were analyzed using Spearman's coefficient. Logistic regression analysis was used to determine factors associated with patients' global perception of their health. Of the patients investigated, 81 (54%) had limited cutaneous SSc, 65 (43.3%) diffuse SSc, and 4 (2.7%) limited SSc. The 3 disability domains most often cited were walking (82 patients [54.6%]), housekeeping (67 patients [44.6%]), and sport activities (59 patients [39.3%]). The MACTAR score correlated moderately with KPS (r = 0.58) but only weakly with the HAQ score (r = 0.38). In multivariate analysis, 2 factors were associated with patients' negative global perception of their health status: KPS (odds ratio [OR] 1.07, 95% confidence interval [95% CI] 1.00-1.15) and MHISS score (OR 0.93, 95% CI 0.88-0.99). For assessing SSc patient priorities concerning disability, the MACTAR has acceptable construct validity. Its weak correlation with the HAQ suggests that it adds useful information on disability.

Arthritis patients show long-term benefits from 3 weeks intensive exercise training directly following hospital discharge

To examine the efficacy of short-term intensive exercise training (IET) directly following hospital discharge. In the Disabled Arthritis Patients Post-hospitalization Intensive Exercise Rehabilitation (DAPPER) study, patients with rheumatoid arthritis or osteoarthritis were eligible when they needed hospitalization for either a flare-up in disease, elective hip or knee arthroplasty. The intervention group received IET for 3 weeks immediately after discharge; the control group was treated with the usual care (UC). The intensive exercise was provided in a resort. Outcomes were assessed at baseline, after 3, 13, 26 and 52 weeks. Range of motion was measured using the Escola Paulista de Medicina-Range of Motion scale (EPM-ROM), disability was measured using the HAQ and the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR), and for health-related quality of life (HRQoL), the Research and Development 36-Item Health Survey (RAND-36) was used. The IET showed a better and faster improvement than UC on all outcome measures except for HRQoL. Up to 52 weeks after baseline, the EPM-ROM and the MACTAR remained favourable in IET compared with UC. At 3 weeks, the MACTAR improved significantly more in the IET compared with the UC: mean difference -5.5 (95% CI -8.4 to -2.2). At 26 weeks, the mean difference remained significant (-5.2; 95% CI -10.0 to -0.34). At 52 weeks, the effect was not significant; however, the mean difference in improvement between the groups can be considered clinically relevant. At 3 weeks, the IET had improved significantly more on the HAQ walking and rising subscales. Intensive short-term exercise training of arthritis patients, immediately after hospital discharge results in improved regain of function. The DAPPER programme has a direct effect, which lasts up to 52 weeks.