Three distinct physical behavior types in fatigued patients with multiple sclerosis.

BACKGROUND: Multiple sclerosis often leads to fatigue and changes in physical behavior (PB). Changes in PB are often assumed as a consequence of fatigue, but effects of interventions that aim to reduce fatigue by improving PB are not sufficient. Since the heterogeneous nature of MS related symptoms, levels of PB of fatigued patients at the start of interventions might vary substantially. Better understanding of the variability by identification of PB subtypes in fatigued patients may help to develop more effective personalized rehabilitation programs in the future. This study aimed to identify PB subtypes in fatigued patients with multiple sclerosis based on multidimensional PB outcome measures. METHODS: Baseline accelerometer (Actigraph) data, demographics and clinical characteristics of the TREFAMS-ACE participants (n = 212) were used for secondary analysis. All patients were ambulatory and diagnosed with severe fatigue based on a score of ≥35 on the fatigue subscale of the Checklist Individual Strength (CIS20r). Fifteen PB measures were used derived from 7 day measurements with an accelerometer. Principal component analysis was performed to define key outcome measures for PB and two-step cluster analysis was used to identify PB types. RESULTS: Analysis revealed five key outcome measures: percentage sedentary behavior, total time in prolonged moderate-to-vigorous physical activity, number of sedentary bouts, and two types of change scores between day parts (morning, afternoon and evening). Based on these outcomes three valid PB clusters were derived. CONCLUSIONS: Patients with severe MS-related fatigue show three distinct and homogeneous PB subtypes. These PB subtypes, based on a unique set of PB outcome measures, may offer an opportunity to design more individually-tailored interventions in rehabilitation. TRIAL REGISTRATION: Clinical trial registration no ISRCTN 82353628 , ISRCTN 69520623  and  ISRCTN 58583714 .

A lifestyle intervention improves fatigue, mental health and social support among adolescents and young adults with cerebral palsy: focus on mediating effects.

OBJECTIVE: To evaluate the effect of a lifestyle intervention on fatigue, participation, quality of life, gross motor functioning, motivation, self-efficacy and social support, and to explore mediating effects of physical behavior and physical fitness. DESIGN: A randomized controlled trial with intention to treat analysis. SETTING: Rehabilitation centers in university hospitals in the Netherlands. SUBJECTS: Adolescents and young adults with spastic cerebral palsy. INTERVENTIONS: A six-month lifestyle intervention that consisted of physical fitness training combined with counseling sessions focused on physical behavior and sports participation. MAIN MEASURES: Fatigue, social participation, quality of life and gross motor functioning. RESULTS: The lifestyle intervention was effective in decreasing fatigue severity during the intervention (difference = -6.72, p = 0.02) and in increasing health-related quality of life with respect to bodily pain (difference = 15.14, p = 0.01) and mental health (difference = 8.80, p = 0.03) during follow-up. Furthermore, the domain participation and involvement of the social support increased during both the intervention (difference = 5.38, p = 0.04) and follow-up (difference = 4.52, p = 0.03) period. Physical behavior or physical fitness explained the observed effects for 22.6%, 9.7% and 28.1% of improvements on fatigue, bodily pain and mental health, but had little effect on social support (2.6%). INTERPRETATION: Fatigue, bodily pain, mental health and social support can be improved using a lifestyle intervention among adolescents and young adults with cerebral palsy. Furthermore, substantial mediating effects were found for physical behavior and physical fitness on fatigue, bodily pain and mental health.

Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers.

BACKGROUND: Transition from paediatric to adult healthcare has received little attention in the Netherlands. This study aimed to: (i) map experiences with the transfer to adult care of young adults with chronic conditions; and (ii) identify recommendations for transitional care of young adults, their parents and healthcare providers. METHODS: Semi-structured interviews with 24 young adults after transfer (aged 15-22 years; diagnosed with haemophilia, diabetes mellitus, spina bifida, congenital heart disorders, cystic fibrosis, juvenile rheumatoid arthritis or sickle cell disease), 24 parents and 17 healthcare providers. Thematic analysis was performed. RESULTS: Only the haemophilia department offered a structured transition programme, most patients had not been prepared for transition. Experiences and views of patients, parents and professionals mainly overlapped and were condensed into four core themes. Two are related to moving to adult care: (1) 'leaving paediatric care is a logical step'. Leaving familiar surroundings was harder for parents than for young adults who displayed a positive 'wait-and-see' attitude; and (2) 'transition is complicated by cultural gaps between paediatric and adult services'. Young adults and parents felt lost after transfer and recommended their peers 'to be alert and involved'. Providers also recognized the cultural chasm between both services and worried about non-compliance, lost to follow-up and lack of independence. Two other themes indicated priorities for improvement: (3) 'better patient and parent preparation' for differences between healthcare settings and for new roles and responsibilities with respect to self-management; and (4) 'more collaboration and personal links' between paediatric and adult care providers. CONCLUSIONS: Action is required to cross the chasm between paediatric and adult-oriented care. Preparation for transition should start early and focus on strengthening adolescents' independency without undermining parental involvement. Building bridges between services, gaining trust and investing in new personal relations is a challenge for all parties involved: transition is about responding and bonding.

Functional activities of the upper extremity of young adults with cerebral palsy: a limiting factor for participation?

PURPOSE: To assess functional activities of the upper extremity of young adults with cerebral palsy (CP) and to determine their relations with participant characteristics and participation. METHOD: Assessment of functional activities of the upper extremity was performed on 103 participants (aged 16-20 years) with the Melbourne assessment and the Abilhand Questionnaire. Participation was measured with the Life Habits Questionnaire. Participant characteristics included age, gender, limb distribution of the spastic paresis, educational level and gross and fine motor function. Relations among these variables were studied by means of correlation coefficients and linear regression analysis. RESULTS: Limitations in functional activities of the upper extremity were related to the limb distribution of the spastic paresis and were especially present in quadriplegic participants. Significant correlations between participant characteristics and measures of functional activities were present. Limitations in functional activities of the upper extremity, measured with the Abilhand Questionnaire, were an important determinant for participation, in addition to the gross motor function and educational level. CONCLUSION: Limitations in functional activities of the upper extremity are an important determinant for restrictions in participation in young adults with CP. It is recommended to include assessment of functional activities of the upper extremity in patients with CP.

Responsiveness of isokinetic dynamometry parameters, pain and activity level scores to evaluate changes in patients with capsulitis of the shoulder.

OBJECTIVE: To determine the responsiveness to change of isokinetic dynamometry of the shoulder and to compare this responsiveness with outcome measures of pain and activity level. DESIGN: Responsiveness was evaluated as the change in outcome after intra-articular steroid injection in patients with capsulitis of the shoulder. Effect sizes of all outcome measures, quantified as standardized response means, were compared. Relationships between change scores of shoulder function and activities were assessed. SUBJECTS: Ten patients with unilateral capsulitis of the shoulder. MAIN OUTCOME MEASURES: Muscle strength and active range of motion were measured by isokinetic dynamometry. We then calculated involved/uninvolved ratios of the maximal peak torques of abduction, adduction, external and internal rotation, active range of motion of abduction and external rotation. In addition, pain was scored using the numeric rating scale (NRS-101) and activity level was scored using the Shoulder Disability Questionnaire. RESULTS: The standardized response mean of all outcome parameters was equal to or greater than 0.8, except for active range of motion of abduction. No significant differences between the standardized response means were found. There is a significant correlation between the change scores of NRS-101 and Shoulder Disability Questionnaire. No significant correlations were found between the change scores of NRS-101 and Shoulder Disability Questionnaire on the one hand, and involved/ uninvolved ratios of peak torques and active range of motion on the other. CONCLUSIONS: Responsiveness of all outcome measures is good. Parameters of isokinetic dynamometry may provide additional information as compared with the usual outcome measures of pain and functional level.

Everyday physical activity in adolescents and young adults with meningomyelocele as measured with a novel activity monitor.

We measured the extent of hypoactivity in adolescents and young adults with meningomyelocele with an activity monitor. The activity monitor is based on long-term ambulatory monitoring of signals from body-fixed accelerometers during everyday life and is aimed at the assessment of mobility-related activities. Measurements were performed during 2 consecutive weekdays in 14 patients with meningomyelocele (aged 14 to 26 years) and in 14 matched, healthy subjects. Mean duration of dynamic activities (composite measure) was less in the patients (6.5 +/- 2.3%) than in comparison subjects (12.7 +/- 4.3%, P =.001). Number of walking or wheelchair-driving periods was 122 +/- 48 in the patients and 185 +/- 65 in the comparison subjects (P =.01). Resting heart rate was higher in the patients (70 +/- 7 beats/min vs 64 +/- 5 beats/min, P =.01). Time spent with dynamic activities was correlated with ambulatory status (r(s) = 0.55, P <.05). Adolescents and young adults with meningomyelocele, particularly the nonambulators, are considerably hypoactive.