Clotting factor activity levels and bleeding risk in people with haemophilia playing sports.

BACKGROUND: Improved treatment options for people with haemophilia (PWH) have increased the possibilities for sports participation, but the risk of sports-induced bleeding (SIB) is still considered considerable by many. AIM: To assess sports associated injury- and bleeding risk in PWH and to assess clotting levels associated with safe sports participation. METHODS: Sports injuries and SIBs were prospectively collected for 12 months in PWH aged 6-49 without inhibitors playing sports at least once weekly. Injuries were compared according to factor levels, severity, joint health, sports risk category and sports intensity. Factor activity at the time of injury was estimated using a pharmacokinetic model. RESULTS: 125 participants aged 6-49 (41 children, 90% haemophilia A; 48% severe, 95% severe on prophylaxis) were included. Sports injuries were reported by 51 participants (41%). Most participants (62%) reported no bleeds at all and only 16% reported SIBs. SIBs were associated with factor levels at time of injury (OR: 0.93/%factor level (CI 0.88-0.99); p = .02), but not with haemophilia severity (OR: 0.62 (CI 0.20-1.89); p = .40), joint health, sports risk category or sports intensity. PWH with factor levels <10% during sports injury had a bleeding risk of 41% versus 20% in those with higher (>10%) factor levels. CONCLUSION: The results of this study emphasize the importance of clotting factor levels in prevention of bleeds. This information is vital for patient counselling and tailoring prophylactic treatment with clotting factors and non-replacement therapy.

Sports participation and sports injuries in Dutch boys with haemophilia.

INTRODUCTION: Sports participation in children with hemophilia is generally considered to be associated with increased injury risk, which is generally considered highest in severe hemophilia. AIM: To assess sports participation according to age and severity in children with hemophilia and its association with sports injuries. METHODS: In a retrospective single-center study, sports participation, injuries, and bleeding data from three consecutive annual clinic visits were collected for young patients with hemophilia (PWH, aged 6-18). Sports in categories 2.5 and 3 of 3 according to the National Hemophilia Foundation classification were considered high-risk. Groups were compared using chi-square testing. RESULTS: 105 PWH (median age: 13(IQR 10-14); 53% severe; bleeding rate: 1/y) were identified; three were unable to perform sports and were excluded. The majority of PWH (77%) played sports weekly, of which 80% high-risk sports. Sports participation (median 3.0x/wk), and the proportion of injured PWH was similar in severe (42%) and non-severe (33%) PWH. Sports injuries were rare (65% no injuries in 3 years, median 0/y (IQR 0-1)). Annually, PWH did not report more injuries (15%) than age-matched boys (28%). Sports injuries were not associated with frequency and type of sports. DISCUSSION: This retrospective study showed high sports participation (including high-risk sports) and low injury rates. Sports participation was similar across severities and injury rates were not higher than among the general population. Injuries were not associated with frequency or type of sports. A prospective study with objective assessment of sports participation and injuries is warranted to confirm these findings and avoid recall bias.

Changes in Quality of Life During Training for the HandbikeBattle and Associations With Cardiorespiratory Fitness.

OBJECTIVE: To investigate (1) changes in life satisfaction and mental health during 5 months of training for the HandbikeBattle and 4 months of follow-up; (2) associations between changes in handcycling cardiorespiratory fitness and changes in life satisfaction and mental health during the training period. DESIGN: This is a multicenter prospective cohort study with the following measurements: the start of the training (T1), after the 5-month training period, before the event (T2), and after 4 months of follow-up (T3). At T1, T2, and T3, questionnaires were filled out. At T1 and T2, a graded exercise test was performed to measure cardiorespiratory fitness (peak oxygen consumption [Vo2peak] and peak power output [POpeak]). SETTING: Ten Dutch rehabilitation centers training for the HandbikeBattle event. PARTICIPANTS: Patients with a rehabilitation history (N=136) and health conditions such as spinal cord injury, amputation, or multiple trauma history. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Life satisfaction as the sum score of 2 questions (range, 2-13) and the Mental Health subscale of the 36-item Short Form Health Survey (range, 0-100). RESULTS: Multilevel regression analyses showed that life satisfaction increased during the training period and did not significantly change during follow-up (mean ± SD, T1: 8.2±2.2; T2: 8.6±2.3; T3: 8.5±2.4). Mental health showed no change over time (T1: 77.7±14.5; T2: 77.8±14.5; T3: 75.7±16.5). An improvement in cardiorespiratory fitness was associated with an increase in life satisfaction (POpeak, ß=0.014, P=.046; Vo2peak, ß=1.068, P=.04). There were no associations between improvement in cardiorespiratory fitness and an increase in mental health (POpeak, P=.66; Vo2peak, P=.33). CONCLUSIONS: This study shows a positive course of life satisfaction during training for the HandbikeBattle. An improvement in cardiorespiratory fitness was longitudinally associated with an increase in life satisfaction. Mental health showed no changes over time.

Energy expenditure and muscle activity during lying, sitting, standing, and walking in people with motor-incomplete spinal cord injury.

STUDY DESIGN: Cross-sectional exploratory study. OBJECTIVES: To determine oxygen uptake (VO2), energy expenditure (EE), and muscle activity (MA) during lying (rest), sitting, standing, and walking among ambulatory individuals with spinal cord Injury (SCI) and to compare VO2, EE, and MA between individuals with different levels of ambulation. SETTING: Rehabilitation institution with a spinal cord injury unit. METHODS: A total of 22 adults with motor-incomplete SCI, ten in a low-ambulation group (non-functional or household walker) and 12 in a high-ambulation group (community or normal walker). VO2 was measured using indirect calorimetry. EE was expressed in metabolic equivalent of task (MET). MA was measured using a wireless surface electromyography device. RESULTS: Mean VO2 was 3.19 ml/kg/min. During lying and sitting, EE was below 1.5 METs for all participants. During standing, three participants of the low-ambulation group and none in the high-ambulation group showed MET values of >1.5. In the walking condition, all participants showed MET values above 1.5. MA during stance was higher compared to the sitting condition and significantly higher in the low-ambulation group compared to the high-ambulation group. CONCLUSION: Lying, supported- and unsupported sitting, without moving, appear to be sedentary behaviors for ambulatory individuals with a motor-incomplete SCI (MET values of <1.5 and a lack of MA). Walking, but not standing, is a moderate physical activity (>1.5 METs), which can be used by all individuals with motor-incomplete SCI to interrupt sedentary behavior.

Prevalence of hypertension and associated risk factors in people with long-term spinal cord injury living in the Netherlands.

PURPOSE: To describe the prevalence of hypertension and associated risk factors in people with long-term spinal cord injury (SCI) and to compare the prevalence of high blood pressure and/or the use of antihypertensive drugs with the prevalence in the Dutch general population. METHOD: Multicentre cross-sectional study (N = 282). Hypertension was defined as a systolic blood pressure (SBP) of ≥140 mmHg and/or a diastolic blood pressure (DBP) of ≥90 mmHg after ≥2 blood pressure measurements during ≥2 doctor visits. High blood pressure was defined as a single measurement of a SBP of ≥140 mmHg and/or a DBP of ≥90 mmHg. RESULTS: The prevalence of hypertension was 21.5%. Significant predictors were: lesion level below C8 (T1-T6: OR =6.4, T7-L5: OR =10.1), history of hypercholesterolemia (OR =4.8), longer time since injury (OR =1.1), higher age (OR =1.1). The prevalence of high blood pressure and/or the use of antihypertensive drugs was higher in men (T1-T6 lesion: 48%; T7-L5 lesion: 57%) and women (T1-T6 lesion: 48%; T7-L5 lesion: 25%) with a SCI below C8 compared to Dutch able-bodied men (31%) and women (18%). CONCLUSION: High blood pressure is common in people with SCI. Screening for hypertension during annual checkups is recommended, especially in those with a SCI below C8. Implications for Rehabilitation High blood pressure is common in people with long-term SCI living in the Netherlands and its prevalence is higher in both men and women with a spinal cord lesion level below C8 compared with the age-matched Dutch general population. It is recommended to screen for hypertension during annual checkups in people with SCI, especially in those with a higher risk of developing hypertension, e.g. those with a spinal cord lesion level below C8 and an age of ≥45 years or a time since injury of ≥20 years. When a high blood pressure is measured in people with SCI, they should receive a further assessment of the blood pressure according to the available guidelines for the general population, including ambulatory 24 h-blood pressure monitoring.

Secondary health conditions and quality of life in persons living with spinal cord injury for at least ten years.

OBJECTIVES: To describe the prevalence of secondary health conditions among persons with long-term spinal cord injury, and the relationship between these secondary health conditions and quality of life. DESIGN: Multicentre, cross-sectional study. SUBJECTS: Individuals (n = 282) with traumatic or non-traumatic spinal cord injury for ≥ 10 years, age at injury 18-35 years, current age 28-65 years, and using a wheelchair. METHODS: Occurrence of 13 secondary health conditions was assessed during a consultation with a rehabilitation physician. Quality of life was measured with the International Spinal Cord Injury Quality of Life Basic Data Set. RESULTS: Median time since injury was 22.0 years. Median number of secondary health conditions was 4. The most prevalent secondary health conditions were: musculoskeletal pain (63.5%), oedema (38.7%), neuropathic pain (34.1%) and urinary tract infections (33.3%). Only oedema showed a significant association with increasing time since injury. Median Total Quality of Life Basic Data Set score was 7. Musculoskeletal pain, pressure ulcers, problematic spasticity and constipation showed an independent association with quality of life in multiple regression analysis, but in general, these associations were weak. CONCLUSION: Secondary health conditions are common among persons with long-term spinal cord injury and the following secondary health conditions were independently associated with lower quality of life: musculoskeletal pain, pressure ulcers, problematic spasticity, and constipation. Minimizing the impact of secondary health conditions should be a priority in the long-term care of persons with spinal cord injury.

[Physical activity in wheelchair users with spinal cord injury: prerequisites for and effects of an active lifestyle]. / Rolstoelgebruikers met een dwarslaesie in beweging. Effecten van en voorwaarden voor een actieve leefstijl.

Wheelchair users with spinal cord injury generally have a relatively inactive lifestyle. Several studies have shown that an inactive lifestyle is associated with a lower fitness level, poorer health, reduced social participation and a lower quality of life for wheelchair users. There are a number of ways in which wheelchair users can remain active in daily life, for instance, by using a wheelchair or handbike for mobility instead of taking the car, and by participating in sports or wheelchair sports. Some prerequisites should be met to enable wheelchair users to have a more active lifestyle: the wheelchair should be optimally adjusted and the everyday environment, including sport facilities, should be easily accessible. An active lifestyle often also requires a change in attitude or behaviour. General practitioners, other primary healthcare providers and rehabilitation professionals can help in this respect.

Wheelchair exercise capacity in spinal cord injury up to five years after discharge from inpatient rehabilitation.

OBJECTIVE: To elucidate the course and determinants of wheelchair exercise capacity in spinal cord injury up to 5 years after discharge from inpatient rehabilitation, and to describe loss to follow-up. DESIGN: Prospective cohort study, with measurements at the start and discharge from inpatient rehabilitation, 1 and 5 years after discharge. SUBJECTS: A total of 225 wheelchair-dependent persons with spinal cord injury. METHODS: Random coefficient analysis of the course and determinants of peak aerobic power output (POpeak) and peak oxygen uptake (VO2peak). RESULTS: A total of 162 participants attended 1 or more peak exercise tests and were analysed. Significant changes were found for both VO2peak and POpeak between start and 5 years after discharge, and discharge and 5 years after discharge. No significant changes were found for VO2peak and POpeak between 1 year and 5 years after discharge. Age, gender, level and completeness of lesion were determinants for level of VO2peak and age, gender, and level of lesion for level of POpeak. No significant determinants were found for the course of wheelchair exercise capacity. The 63 participants who were not analysed were older, and showed more persons with a tetraplegia. CONCLUSION: Wheelchair exercise capacity of persons with spinal cord injury stabilizes at between 1 and 5 years after discharge. The participants appear to be a positive selection of the total study group.

Patterns of changes in wheelchair exercise capacity after spinal cord injury.

OBJECTIVES: (1) To identify different patterns of changes in wheelchair exercise capacity in the period between the start of active spinal cord injury (SCI) rehabilitation and 5 years after discharge; (2) to examine the pattern determinants of the change in wheelchair exercise capacity. DESIGN: Prospective cohort study. Measurements were recorded at the start of active inpatient rehabilitation, 3 months after the start, at discharge of inpatient rehabilitation, 1 year after discharge, and 5 years after discharge. SETTING: Eight rehabilitation centers. PARTICIPANTS: Persons with SCI (N=130; age range, 18-65y), who were wheelchair-dependent, at least for long distances. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Wheelchair exercise capacity: peak power output (W). RESULTS: We found 4 different patterns of the change of peak power output (mean ± SD): (1) a pattern with high and progressive scores (33% of total study group): high progressive scores (start of rehabilitation: 49±15W to 5 years after discharge: 77±17.2W); (2) a pattern of improvement during inpatient rehabilitation and deterioration after inpatient rehabilitation (12%): progressive scores during inpatient rehabilitation with deteriorating scores after discharge (start of rehabilitation: 29±8.7W, to discharge: 60±8.4W, to 5 years after discharge: 39±13.1W); (3) a pattern with low and only slightly progressive scores (52%): low progressive scores (start of rehabilitation: 20±10.1W to 5 years after discharge: 31±15.9W); and (4) a pattern with low scores during inpatient rehabilitation and a sharp rise after discharge (3%): low inpatient scores with strong progressive scores after discharge (start of rehabilitation: 29±15.5W to 5 years after discharge: 82±10.6W). A logistic regression of factors that may distinguish between patterns with high and progressive scores and patterns with low and only slightly progressive scores revealed that older age, being a woman, having a tetraplegic lesion, and low functional status were associated with patterns with low and only slightly progressive scores. The pattern of improvement during inpatient rehabilitation and deterioration after inpatient rehabilitation showed more neuropathic pain and lower sports participation than patterns with high and progressive scores. CONCLUSIONS: For the vast majority of patients, wheelchair exercise capacity after SCI shows a positive trend and can be described in distinct patterns that are dependent on personal, lesion, and functional characteristics.

Trajectories and predictors of the course of mental health after spinal cord injury.

OBJECTIVE: To study the course and predictors of mental health in the period between the start of active spinal cord injury (SCI) rehabilitation and 5 years after discharge. The hypothesis was that different mental health trajectories would be identified. DESIGN: Multicenter prospective cohort study with measurements at the start of active rehabilitation, after 3 months, at discharge, 1, 2, and 5 years after discharge. SETTING: Eight Dutch rehabilitation centers with specialized SCI units. PARTICIPANTS: Persons (N=206) with recently acquired SCI aged between 18 and 65 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The 5-item Mental Health Index with a total score between 0 (lowest mental health) and 100 (highest mental health). RESULTS: Levels of mental health increased between the start of active rehabilitation and 3 months later, remained stable thereafter, and increased again between 2 and 5 years after discharge. Latent class growth mixture modeling revealed 5 trajectories: (1) high scores (above 80) at all time-points (52%), (2) low scores (≤60) at all time-points (4%), (3) early recovery from 40 to scores above 70 (13%), (4) intermediate scores from 60 to scores above 70 (29%), and (5) severe deterioration of scores above 70 to scores below 30 (2%). Pain, sex, and education level were predictors to distinguish between the 5 trajectories. CONCLUSIONS: Five different mental health trajectories were identified between the start of active rehabilitation and 5 years after discharge. About one third of the persons with SCI still perceived moderate to severe mental health problems 5 years after discharge. Pain, sex, and education level only predicted a small part of the variance in mental health trajectories.

Validity of the Life Satisfaction questions, the Life Satisfaction Questionnaire, and the Satisfaction With Life Scale in persons with spinal cord injury.

OBJECTIVE: To assess and compare the validity of 3 life satisfaction instruments in persons with spinal cord injury (SCI). DESIGN: Cross-sectional study 5 years after discharge from inpatient rehabilitation. SETTING: Eight rehabilitation centers with specialized SCI units. PARTICIPANTS: Persons (N=225) with recently acquired SCI between 18 and 65 years of age were included in a cohort study. Data were available for 145 persons 5 years after discharge. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Life Satisfaction questions (LS Questions), the Life Satisfaction Questionnaire (LiSat-9), and the Satisfaction With Life Scale (SWLS). RESULTS: There were no floor or ceiling effects. Cronbach α was questionable for the LS Questions (.60), satisfactory for the LiSat-9 (.75), and good for the SWLS (.83). Concurrent validity was shown by strong and significant Spearman correlations (.59-.60) between all 3 life satisfaction instruments. Correlations with measures of mental health and participation were .52 to .56 for the LS Questions, .45 to .52 for the LiSat-9, and .41 to .48 for the SWLS. Divergent validity was shown by weak and in part nonsignificant correlations between the 3 life satisfaction measures and measures of functional independence and lesion characteristics. CONCLUSIONS: Overall, the validity of all 3 life satisfaction measures was supported. Despite questionable internal consistency, the concurrent and divergent validity of the LS Questions was at least as good as the validity of the LiSat-9 and the SWLS.

Recovery of life satisfaction in persons with spinal cord injury during inpatient rehabilitation.

OBJECTIVE: To determine the course of life satisfaction of persons with spinal cord injury and its determinants during inpatient rehabilitation and up to 1 yr after discharge. DESIGN: Prospective cohort study of 222 persons with spinal cord injury. Measurements at the start of active rehabilitation, after 3 mos, at discharge, and 1 yr after discharge. Questions about current life satisfaction and current life satisfaction compared with life satisfaction before spinal cord injury were asked and analyzed, and the sum score Life Satisfaction Total of these questions was analyzed using a multilevel regression analysis. Person and injury characteristics and secondary impairments at each measurement were analyzed as possible determinants of the Life Satisfaction Total score. RESULTS: Estimated Life Satisfaction Total scores improved from 5.3 (SE, 0.16) at the start of active rehabilitation up to 6.5 (0.17) at discharge and remained stable (6.5; 0.16) during the first year after discharge. Significant determinants of a positive course of life satisfaction were less pain, fewer secondary impairments, and better functional status. CONCLUSIONS: Life satisfaction already improves during inpatient rehabilitation. Functional status, pain, and secondary impairments must be treated adequately in multidisciplinary rehabilitation.

Changes and determinants of life satisfaction after spinal cord injury: a cohort study in the Netherlands.

OBJECTIVE: To determine the impact of spinal cord injury (SCI) on life satisfaction of persons with SCI 1 year after discharge of inpatient rehabilitation. DESIGN: A cohort study. Life satisfaction before SCI was retrospectively measured at the start of active rehabilitation. One year after discharge from inpatient rehabilitation, current life satisfaction was measured. SETTING: Eight rehabilitation centers in The Netherlands. PARTICIPANTS: Persons (N=147) aged 18 to 65 and wheelchair-dependent at least for long distances. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The Life Satisfaction Questionnaire. RESULTS: Mean satisfaction with life +/- SD as a whole was 5.3+/-0 before SCI and 4.3+/-1.3 one year after inpatient rehabilitation. Sexual life, self-care, and vocational situation showed the largest impact of SCI (P<.05), whereas the social relationships domains appeared to be the least affected. Decrease of life satisfaction after SCI was larger when using the retrospective ratings than when using general population scores. Significant determinants of life satisfaction after SCI were high lesion level (beta=.31, P<.05), pain (beta=.19, P<.05), and secondary impairments (beta=.22, P<.05). CONCLUSIONS: Life satisfaction decreased in persons with SCI. Level of lesion and suffering secondary impairments or pain were associated with low life satisfaction 1 year after discharge from inpatient rehabilitation.