Henk J. Stam

Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy

Purpose: To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden. Methods: In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness. The expanded CSI version, the CarerQoL and open questions were used to analyse caregiving in more depth. In uni and multivariate analyses, associations of objective care characteristics, patient characteristics and caregiver characteristics with burden were explored. Results: Parents indicated substantial burden, but valued giving care as being important and rewarding. Subjective burden was associated with received support, tracheotomy, active coping by the patient and anxiety in patient and parents, together explaining 34%–36% of variance. Living situation was not associated with experienced burden. Conclusions: Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood. Implications for Rehabilitation Parents of adult patients with Duchenne Muscular Dystrophy experience substantial subjective caregiver burden, but they also value caregiving as important and rewarding. Level of subjective caregiver burden in parents is associated with support, tracheotomy, active coping by the patient and anxiety both in patients and parents. Subjective caregiver burden might be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping.

A new intervention to improve work participation of young adults with physical disabilities: A feasibility study

The aim of the study was to evaluate the feasibility of a new intervention to improve work participation of young adults with physical disabilities, addressing (1) implementation and costs and (2) preliminary effectiveness.

Changes in Pulmonary Function During the Early Years After Inpatient Rehabilitation in Persons With Spinal Cord Injury: A Prospective Cohort Study

OBJECTIVEnTo describe changes in pulmonary function (PF) during the 5 years after inpatient rehabilitation in persons with spinal cord injury (SCI) and to study potential determinants of change.nnnDESIGNnProspective cohort study.nnnSETTINGnEight rehabilitation centers with specialized SCI units.nnnPARTICIPANTSnPersons with SCI (N=180).nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnPF was determined by forced vital capacity (FVC) and forced expiratory volume in 1 second (FEV1) as a percentage of the predicted value, at the start of rehabilitation, at discharge, and 1 and 5 years after discharge from inpatient rehabilitation. The population was divided into 3 subgroups on the basis of whether their PF declined, stabilized, or improved.nnnRESULTSnFVC improved on average 5.1% over the whole period between discharge of inpatient rehabilitation and 5 years thereafter, but changes differed largely between persons. FVC declined in 14.9% of the population during the first year after discharge. During this year, body mass index, inspiratory muscle strength, change in peak power output, and change in peak oxygen uptake differed significantly between subgroups. FVC declined in 28.3% of the population during the following 4 years, but no differences were found between the subgroups for this period. Subgroups based on changes in FEV1 differed only with respect to change in peak oxygen uptake the first year after discharge.nnnCONCLUSIONSnIn our study, many persons with SCI showed a decline in PF, larger than the normal age-related decline, during the 5 years after inpatient rehabilitation. Results suggest that a decline in PF during the first year after inpatient rehabilitation is associated with higher body mass index, lower inspiratory muscle strength, and declined physical fitness.

Ultrasonographic Assessment of Flexor Tendon Mobilization: Effect of Different Protocols on Tendon Excursion

BACKGROUNDnDifferent mobilization protocols have been proposed for rehabilitation after hand flexor tendon repair to provide tendon excursion sufficient to prevent adhesions. Several cadaver studies have shown that the position of the neighboring fingers influences tendon excursions of the injured finger. We hypothesized that the positions of adjacent fingers influence the long finger flexor digitorum profundus tendon excursion, measured both absolutely and relative to the surrounding tissue of the tendon.nnnMETHODSnLong finger flexor digitorum profundus tendon excursions and surrounding tissue movement were measured in zone V in eleven healthy subjects during three different rehabilitation protocols and two experimental models: (1) an active four-finger mobilization protocol, (2) a passive four-finger mobilization protocol, (3) a modified Kleinert mobilization protocol, (4) an experimental modified Kleinert flexion mobilization model, and (5) an experimental modified Kleinert extension mobilization model. Tendon excursions were measured with use of a frame-to-frame analysis of high-resolution ultrasound images.nnnRESULTSnThe median absolute long finger flexor digitorum profundus tendon excursions were 23.4, 17.8, 10.0, 13.9, and 7.6 mm for the active four-finger mobilization protocol, the passive four-finger mobilization protocol, the modified Kleinert mobilization protocol, the experimental modified Kleinert flexion mobilization model, and the experimental modified Kleinert extension mobilization model, respectively, and these differences were all significant (p ≤ 0.041). The corresponding relative flexor digitorum profundus tendon excursions were 11.2, 8.5, 7.2, 10.4, and 5.6 mm. Active four-finger mobilization protocol excursions were significantly (p = 0.013) greater than passive four-finger mobilization protocol excursions but were not significantly greater than experimental modified Kleinert flexion mobilization model excursions (p =0.213).nnnCONCLUSIONSnThe present study demonstrated large and significant differences among the different rehabilitation protocols and experimental models in terms of absolute and relative tendon displacement. More importantly, the present study clearly demonstrated the influence of the position of the adjacent fingers on the flexor tendon displacement of the finger that is mobilized.

Assessment of transverse ultrasonographic parameters to optimize carpal tunnel syndrome diagnosis in a case-control study

Introduction: Transverse ultrasound measurements of the median nerve (MN) for diagnosis of carpal tunnel syndrome (CTS) suffer from inconsistent findings within and between patients and healthy subjects. The objective of this study was to improve ultrasound assessment of CTS. Methods: In a case–control study (51 patients, 25 controls) we evaluated the performance gained by: (1) correcting for ultrasound probe angulation; (2) including active parameters such as forceful gripping of the hand; and (3) including hand flexor tendon parameters. Results: Correcting ultrasound probe angulation increased the correct classification rate by 4.5%; including forceful gripping resulted in increasing it by 2.8%; and including the hand flexor tendon resulted in an increase of 1.3%. Conclusions: The best predictive model combines correcting probe angulation with forceful gripping parameters and hand flexor tendon parameters. However, the clinically most practical model might use only probe angulation correction. Muscle Nerve 48: 532–538, 2013

Real-Time Assessment of Fatigue in Patients With Multiple Sclerosis: How Does It Relate to Commonly Used Self-Report Fatigue Questionnaires?

OBJECTIVESn(1) To assess real-time patterns of fatigue; (2) to assess the association between a real-time fatigue score and 3 commonly used questionnaires (Checklist Individual Strength [CIS] fatigue subscale, Modified Fatigue Impact Scale (MFIS), and Fatigue Severity Scale [FSS]); and (3) to establish factors that confound the association between the real-time fatigue score and the conventional fatigue questionnaires in patients with multiple sclerosis (MS).nnnDESIGNnCross-sectional study.nnnSETTINGnMS-specialized outpatient facility.nnnPARTICIPANTSnAmbulant patients with MS (N=165) experiencing severe self-reported fatigue.nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnA real-time fatigue score was assessed by sending participants 4 text messages on a particular day (How fatigued do you feel at this moment?; score range, 0-10). Latent class growth mixed modeling was used to determine diurnal patterns of fatigue. Regression analyses were used to assess the association between the mean real-time fatigue score and the CIS fatigue subscale, MFIS, and FSS. Significant associations were tested for candidate confounders (eg, disease severity, work status, sleepiness).nnnRESULTSnFour significantly different fatigue profiles were identified by the real-time fatigue score, namely a stable high (n=79), increasing (n=57), stable low (n=16), and decreasing (n=13). The conventional questionnaires correlated poorly (r<.300) with the real-time fatigue score. The Epworth Sleepiness Scale significantly reduced the regression coefficient between the real-time fatigue score and conventional questionnaires, ranging from 15.4% to 35%.nnnCONCLUSIONSnPerceived fatigue showed 4 different diurnal patterns in patients with MS. Severity of sleepiness is an important confounder to take into account in the assessment of fatigue.

COST-UTILITY OF A LIFESTYLE INTERVENTION IN ADOLESCENTS AND YOUNG ADULTS WITH SPASTIC CEREBRAL PALSY

OBJECTIVEnTo evaluate the cost-utility of a lifestyle intervention among adolescents and young adults with cerebral palsy.nnnDESIGNnSingle-blind, randomized controlled trial.nnnSETTINGnSix university hospital/clinics in the Netherlands.nnnPARTICIPANTSnFifty-seven adolescents and young adults with spastic cerebral palsy classified as Gross Motor Functioning Classification System (GMFCS) level I-IV.nnnINTERVENTIONnA 6-month lifestyle intervention consisting of physical fitness training combined with counselling sessions focusing on physical behaviour and sports participation.nnnMAIN OUTCOME MEASURESnData on quality of life, direct medical costs and productivity costs were collected using standardized questionnaires. Quality adjusted life years (QALYs) were derived from the Short-Form 36 questionnaire using the Short-Form 6D.nnnRESULTSnQuality of life remained stable over time for both groups. No significant differences between groups were found for direct medical costs or productivity costs. A cost-utility ratio of -€23,664 per QALY was found for the lifestyle intervention compared with no treatment.nnnCONCLUSIONnThe results of this study are exploratory, but indicate that implementing a lifestyle intervention for the cerebral palsy population might be cost-effective or cost-saving compared with offering no intervention to improve physical behaviour and fitness. However, the large range of uncertainty for the cost-utility ratio should be taken into account and the results interpreted with caution.

Development and validation of a clinically applicable ARM use monitor for people after stroke

OBJECTIVEnTo develop and validate a clinically applicable and easy-to-use accelerometry-based device to measure arm use in people after stroke; the Activ8 arm use monitor (Activ8-AUM).nnnDESIGNnDevelopment and validation study.nnnPATIENTSnA total of 25 people at different stages of rehabilitation after stroke were included in this study.nnnMETHODSnThe Activ8-AUM consists of 3 single-sensor Activ8s: one on the unaffected thigh and one on each wrist. Arm use was calculated by combining movement intensity of the arms with data from body posture and movements on the leg sensor. Data were divided into 2 sets: one for determining situation-specific movement intensity thresholds for arm use, and the other to validate the Activ8-AUM using video recordings.nnnRESULTSnOverall agreement between the Activ8-AUM and video recordings was 75%, sensitivity was 73% and specificity was 77%. Agreement between the different categories of arm use ranged from 42% to 93% for the affected arm and from 24% to 82% for the unaffected arm.nnnCONCLUSIONnBy combining the movement intensity threshold with body posture and movements, good agreement was reached between the Activ8-AUM and video recordings. This result, together with the easy-to-use configuration, makes the Activ8-AUM a promising device to measure arm use in people after stroke.

Physical behaviour is weakly associated with physical fatigue in persons with multiple sclerosis-related fatigue

BACKGROUNDnFatigue affects 80% of persons with multiple sclerosis and is associated with daily physical functioning. Both fatigue and physical behaviour are multidimensional concepts.nnnOBJECTIVEnTo study the association between the dimensions of physical behaviour and multiple sclerosis-related fatigue.nnnMETHODSnCross-sectional analysis of 212 persons with multiple sclerosis. Participants were severely fatigued, with a Fatigue Severity Scale median (interquartile range): 5.4 (4.8-5.9) and were minimally to moderately neurologically impaired, based on the Expanded Disability Status Scale: 2.5 (2.0-3.5), 73% had relapsing-remitting multiple sclerosis. Fatigue was measured by questionnaires (i.e. Checklist Individual Strength, Modified Fatigue Impact Scale), and the dimensions subjective, physical, cognitive and psychological fatigue were distinguished. Physical behaviour was measured using an Actigraph GT3X+, and outcomes were categorized into the dimensions of activity amount, activity intensity, day pattern, and distribution of activities.nnnRESULTSnThe physical behaviour dimensions were significantly associated with only the physical fatigue dimension (omnibus F-test: 3.96; df1u2009=u20094, df2u2009=u2009207; pu2009=u20090.004). Additional analysis showed that the amount of activity (unstandardized beta coefficient (β)u2009=u2009-0.16; 95% confidence interval (CI) -0.27 to -0.04; pu2009=u20090.007), activity intensity (βu2009=u2009-0.18; 95% CI -0.31 to -0.06; pu2009=u20090.004) and day pattern of activity (βu2009=u2009-0.17; 95% CI, -0.28 to -0.06; pu2009=u20090.002) were the physical behaviour dimensions that were significantly associated with physical fatigue.nnnCONCLUSIONnPhysical behaviour is weakly associated with physical fatigue and is not associated with other dimensions of fatigue.