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Background and purpose: To report the predictive validity of the perceived limitations in activities and need questionnaire (PLAN-Q), a screening instrument to support neurologists to select patients with neuromuscular disorders (NMD) for referral for a one-off consultation by occupational therapist (OT), physical therapist (PT) and speech therapist (ST). Methods: In a cross-sectional validation study, 102 patients with various NMD participated. Patients received a one-off consultation by an expert OT, PT and ST and filled out the PLAN-Q. Therapists rated the appropriateness of the one-off consultations based on need, available treatment and patient’s motivation. Receiver Operation Characteristic analysis and multivariate logistic regression analysis were used to obtain a PLAN-Q based prediction model for the appropriateness of the one-off consultations. Results: Probability for a one-off OT consultation increased from 64% to 78% (95% CI: 69–85%). Prior test probability for a one-off ST consultation increased from 44% to 61% (95% CI: 48–73%). Prior test probability for one-off PT consultation could not be increased. Conclusion: Screening patients with NMD using the PLAN-Q may assist neurologists in selecting the appropriate patients for a one-off consultation by OT and ST. Unlike our expectations the screening did not guide referral for a one-off consultation by PT. [ABSTRACT FROM AUTHOR]

Objective: To research test–retest reliability and discriminant validity of the Canadian Occupational Performance Measure (COPM), a client-centred outcome measure, in stroke patients. Design: The COPM was administered twice with a mean interval of eight days (SD 2.5, range 5–16). On both occasions the patient identified a maximum of five problems in daily activities. The problems of both interviews were compared. The problems identified during the first COPM were rated by the patient on a performance and satisfaction rating scale on both occasions. The individually identified items with use of the client-centred COPM were compared with the fixed items of standardized measures (Barthel Index, Frenchay Activities Index, Stroke Adapted Sickness Impact Profile-30, Euroqol 5D and Rankin Scale). Setting: Patients were interviewed at their place of residence. Subjects: Twenty-six stroke patients participated, 11 men and 15 women, aged from 26 to 83 years (mean 68, SD 15). Twenty-four patients were six months, two patients were two months post stroke. Results: Of the 115 problems identified during the first COPM, 64 (56%) were also identified the second time. Correlation coefficients for the scores were 0.89 (p < 0.001) for performance and 0.88 (p < 0.001) for satisfaction. Of the individual problems identified with the COPM, 25% or less were present in the standardized measures. Correlations between the scores on the COPM and the standardized measures were low and nonsignificant, while all standardized measures correlated significantly with each other. Conclusions: Test–retest reliability of the COPM was moderate for the item pool but was good for the performance and satisfaction scores. Discriminant validity was confirmed. Many patient-unique problems identified with the COPM were not evaluated by standardized measures. [ABSTRACT FROM AUTHOR]

Life balance is a new and important concept in occupational therapy. New measurements are needed to assess and evaluate life balance and interventions aimed to achieve this concept. This article describes the test-retest reliability of three life balance measures: the Activity Calculator (AC), Activity Card Sort (ACS-NL(18-64)) and Occupational Balance Questionnaire (OBQ11-NL). Data collection took place among 50 participants with neuromuscular diseases: facioscapulohumeral dystrophy (FSHD, n = 25) or mitochondrial myopathy (MM, n = 25). The AC, the ACS-NL(18–64) and the OBQ11-NL were assessed twice with an interval of one week. Intraclass correlation coefficients (ICC-agreement) were applied to examine test-retest reliability. The ICC of the AC-average total day score was.95 (95% CI.91-.97), whereas the ICC of the weights allocated to each activity was 0.80 (95% CI.77–0.82). The ICC of the ACS-NL(18–64) percentage retained activities was 0.92 (95% CI 0.86 − 0.96) and the ICC of the importance score per activity was-.76 (95% CI. 0.68–0.89). The ICC of the OBQ11-NL total score was.76 (95% CI 0.62–0.86). All three tools showed good to excellent test-retest reliability in a sample of patients with FSHD or MM, which is promising for its use in clinical practice and research. The AC, ACS-NL(18–64) and the OBQ11-NL are promising, reliable measures of life balance in patients with neuromuscular diseases. The development of three new instruments for life balance enlarges the possibility for health professionals to measure life balance in clinical practice and research. [ABSTRACT FROM AUTHOR]

Background: Chronic fatigue is present in more than 60% of the patients with a neuromuscular disease and can be their most disabling symptom. Chronic fatigue often coincides with low levels of physical activity and decreased social participation. We have developed a self-management outpatient rehabilitation intervention for patients with a neuromuscular disease and chronic fatigue, called Energetic. This multidisciplinary group programme aims to alleviate fatigue, improve physical endurance and social participation. Objective: The aim of this study was to evaluate the effectiveness of Energetic. Methods: A multicentre, assessor-blinded, two-armed randomized controlled trial was conducted. Assessments were made at inclusion, directly after intervention, and three and eleven months followup. We included patients with a neuromuscular disease and chronic fatigue, and their caregivers. The participants were randomized (1:1) to either an intervention (‘Energetic’) or control (‘usual care’) group. Energetic covered four months and included four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy-conservation strategies; and (4) implementation and relapse prevention in daily life. The primary outcome was the perceived performance score of the Canadian Occupational Performance Measure (COPM). Secondary outcomes included the COPM satisfaction score, and measures of fatigue, physical endurance, activity engagement, mood, self-efficacy and caregiver-burden. Results: Fifty-three patients were included. There was significantly more improvement on COPM-performance, COPM-satisfaction, Checklist Individual Strength (CIS), CIS subscale-fatigue and 6-Minute Walk Test for the intervention group than the control group after intervention, adjusted for baseline COPM scores, gender, work and diagnosis. Conclusion: These results warrant further implementation of this intervention in different settings. [ABSTRACT FROM AUTHOR]