Changes in bladder emptying during inpatient rehabilitation after spinal cord injury and predicting factors: data from the Dutch Spinal Cord Injury Database.

STUDY DESIGN: Secondary analysis of multicentre prospective observational data. OBJECTIVES: To describe methods of bladder emptying at admission and discharge in patients with recently acquired spinal cord injury (SCI) and to describe predictors of bladder emptying methods at discharge. SETTING: First inpatient rehabilitation in specialised rehabilitation centres in the Netherlands. METHODS: Data from the Dutch Spinal Cord Injury Database collected between 2015 and 2019 were used. McNemar-Bowker test was used to evaluate if bladder emptying methods differed over time; One-Way ANOVA and Chi-Square tests to see if bladder emptying methods differed by demographic and injury-related characteristics. Binary logistic regression was used to predict the type of bladder emptying at discharge with demographic and injury-related characteristics measured at admission. RESULTS: Of 1403 patients, 44.1% had cervical, 38.4% thoracic and 17.5% lumbosacral lesions at admission. AIS classification was mostly D (63.8%). The method of bladder emptying changed significantly (p < 0.001) from admission to discharge: decrease of clean intermittent assisted catheterisation (17.1% to 4.1%) and indwelling catheter (33.4% to 16.3%) and increase in clean intermittent self-catheterisation (CISC, 7.8% to 22.2%) and normal voiding (40.2% to 56.1%). Age, sex, SCI level, AIS classification and level of independence predicted the method of bladder emptying at discharge (all p < 0.001). CONCLUSIONS: During first inpatient rehabilitation, the method of bladder emptying changed resulting in more patients discharged with normal voiding and CISC. Age, sex, SCI level, AIS classification and level of independence in self-care were all confirmed as factors playing a role in this change.

Prediction of Psychological Distress Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others.

OBJECTIVES: To identify intra- and interpersonal sociodemographic, injury-related, and psychological variables measured at admission of inpatient rehabilitation that predict psychological distress among dyads of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others (ie, individuals close to the individual with a disability, mostly family members) 6 months after discharge. Differences in predictors were investigated for persons with SCI or ABI and their significant others and were compared between diagnoses. DESIGN: Prospective longitudinal study. SETTING: Twelve Dutch rehabilitation centers. PARTICIPANTS: Dyads (N=157) consisting of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Psychological distress (Hospital Anxiety and Depression Scale). RESULTS: Sociodemographic and injury-related variables were not or were only weakly associated with psychological distress among individuals with SCI or ABI and their significant others 6 months after discharge. Bivariately, higher baseline psychological distress, lower scores on adaptive psychological characteristics (combination of self-efficacy, proactive coping, purpose in life, resilience), and higher scores on maladaptive psychological characteristics (combination of passive coping, neuroticism, appraisals of threat and loss) were related to higher psychological distress, as well as crosswise between individuals with SCI or ABI and their significant others, although less strongly. Combined prediction models showed that psychological distress among persons with SCI or ABI was predicted by education level of their significant other, their own baseline psychological distress, and their own maladaptive psychological characteristics (explained variance, 41.9%). Among significant others, only their own baseline psychological distress predicted psychological distress (explained variance, 40.4%). Results were comparable across diagnoses. CONCLUSIONS: Although a dyadic connection was shown, primarily one's own baseline psychological distress and psychological characteristics were important in the prediction of later psychological distress among both individuals with SCI or ABI and their significant others. Screening based on these variables could help to identify persons at risk for psychological distress.

Self-Efficacy Predicts Personal and Family Adjustment Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others: A Dyadic Approach.

OBJECTIVES: To investigate whether the combination of self-efficacy levels of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others, measured shortly after the start of inpatient rehabilitation, predict their personal and family adjustment 6 months after inpatient discharge. DESIGN: Prospective longitudinal study. SETTING: Twelve Dutch rehabilitation centers. PARTICIPANTS: Volunteer sample consisting of dyads (N=157) of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Self-efficacy (General Competence Scale) and personal and family adjustment (Hospital Anxiety and Depression Scale and McMaster Family Assessment Device General Functioning). RESULTS: In 20 dyads, both individuals with SCI or ABI and their significant others showed low self-efficacy at baseline. In 67 dyads, both showed high self-efficacy. In the low-self-efficacy dyads, 61% of the individuals with SCI or ABI and 50% of the significant others showed symptoms of anxiety 6 months after discharge, vs 23% and 30%, respectively, in the high-self-efficacy dyads. In the low-self-efficacy dyads, 56% of individuals with SCI or ABI and 50% of the significant others reported symptoms of depression, vs 20% and 27%, respectively, in the high-self-efficacy dyads. Problematic family functioning was reported by 53% of the individuals with SCI or ABI and 42% of the significant others in the low-self-efficacy dyads, vs 4% and 12%, respectively, in the high-self-efficacy dyads. Multivariate analysis of variance analyses showed that the combination of levels of self-efficacy of individuals with SCI or ABI and their significant others at the start of inpatient rehabilitation predict personal (V=0.12; F6,302=2.8; P=.010) and family adjustment (V=0.19; F6,252=4.3; P<.001) 6 months after discharge. CONCLUSIONS: Low-self-efficacy dyads appear to be more at risk for personal and family adjustment problems after discharge. Screening for self-efficacy may help healthcare professionals to identify and support families at risk for long-term adjustment problems.

Provided support, caregiver burden and well-being in partners of persons with spinal cord injury 5 years after discharge from first inpatient rehabilitation.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe type and regularity of support given by partners for individuals with paraplegia versus tetraplegia 5 years after discharge from first inpatient rehabilitation; to describe perceived caregiver burden, mental health and life satisfaction among partners; and to analyse determinants of perceived burden and the partner's mental health and life satisfaction. SETTING: The Netherlands. METHODS: Participants were partners of persons with spinal cord injury (SCI) 5 years after discharge from first inpatient rehabilitation (N = 67). Participants completed a self-report questionnaire. Provided support was assessed with an existing scale consisting of 25 activities for which partners could indicate how often they provide support to the patient. Caregiver burden was assessed with the Caregiver Strain Index. Mental health was measured with the Short-Form Health Survey 36 (mental health subscale), and life satisfaction was measured with the Life Satisfaction Questionnaire. RESULTS: Five years after inpatient rehabilitation, partners provided support with a large variety of activities. How often and in which activities partners provided support was associated with lesion level. About 43% of the partners experienced high levels of caregiver burden. Provided support was related to perceived burden (rS = 0.58) and life satisfaction (rS = -0.24), and burden was negatively related to mental health (rS = -0.47) and life satisfaction (rS = -0.67). CONCLUSIONS: High levels of perceived burden among partners and the associations between higher burden with lower well-being show the importance to prevent caregiver overload in partners of individuals with SCI. Monitoring burden during regular rehabilitation visits may help to early detect burden.

Mental health and life satisfaction of individuals with spinal cord injury and their partners 5 years after discharge from first inpatient rehabilitation.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe and compare mental health and life satisfaction between individuals with spinal cord injury (SCI) and their partners 5 years after discharge from first inpatient rehabilitation; and to examine if injury severity moderates the association between individuals' with SCI and their partners' mental health and life satisfaction. SETTING: Dutch community. METHODS: Sixty-five individuals with SCI and their partners completed a self-report questionnaire. Main outcome measures were the mental health subscale of the Short-Form Health Survey and the Life Satisfaction Questionnaire. RESULTS: Levels of mental health and life satisfaction of individuals with SCI and partners were similar, with median scores of 76 and 4.8 versus 76 and 4.6, respectively. Moderate to strong correlations between individuals with SCI and their partners were found for the mental health (rS = 0.35) and life satisfaction scores (rS = 0.51). These associations were generally stronger in the subgroup of individuals with less severe SCI. Associations between scores on separate life domains ranged from negligible (0.05) to moderate (0.53). Individuals with SCI and their partners were least satisfied with their 'sexual life'. Compared with their partners, individuals with SCI were significantly more satisfied in the domains 'leisure situation', 'partnership relation' and 'family life', and less satisfied in 'self-care ability'. CONCLUSIONS: This study showed similarities but also differences in mental health and life satisfaction between individuals with SCI and their partners. In clinical practice, attention on mental health and life satisfaction should, therefore, focus on different domains for individuals with SCI and partners.

Using Self-Regulation Assessment to Explore Associations between Self-Regulation, Participation and Health-Related Quality of Life in a Rehabilitation Population.

OBJECTIVE: Self-regulation, participation and health-related quality of life are important rehabilitation outcomes. The aim of this study was to explore associations between these outcomes in a multi-diagnostic and heterogenic group of former rehabilitation patients. METHODS: This cross-sectional survey used the Self-Regulation Assessment (SeRA), Utrecht Scale for Evaluation of Rehabilitation-participation (USERParticipation) and the Patient-Reported-Outcome-Measurement-System (PROMIS) ability and PROMIS satisfaction with participation in social roles, and the EuroQol-5L-5D and PROMIS-10 Global Health. Regression analyses, controlling for demographic and condition-related factors, were performed. RESULTS: Respondents (n = 563) had a mean age of 56.5 (standard deviation (SD) 12.7) years. The largest diagnostic groups were chronic pain disorder and brain injury. In addition to demographic and condition-related factors, self-regulation subscales explained 0-15% of the variance in participation outcome scores, and 0-22% of the variance in HRQoL outcome scores. Self-regulation subscales explained up to 22% of the variance in satisfaction subscales of participation (USER-Participation and PROMIS) and the mental health subscale of the PROMIS-10. Self-regulation subscales explained up to 11% of the restriction and frequency subscales of participation (USER-Participation) and the physical health subscale of the PROMIS-10. CONCLUSION: Self-regulation is more strongly associated with outcomes such as satisfaction with participation and mental health compared with outcomes such as restrictions in participation and physical health.

Assessing Participation in Adolescents With Cerebral Palsy: Comparison of Life-Habits and USER-Participation.

Objective: To explore and compare the contents and scores of the Assessment of Life Habits (Life-H) with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in adolescents with cerebral palsy. Design: Youth versions of both instruments were used for (1) content comparison and (2) analyses of relations between both instruments, based on cross-sectional data. Setting: Clinic. Participants: Participants were adolescents with cerebral palsy, aged 12-18 years; Gross Motor Function Classification System I-V; N=45. Interventions: Not applicable. Main outcome measures: Assessment of Life Habits (Life-H) with USER-Participation. Results: Both instruments measure independence in participation, called accomplishment (Life-H) and restrictions (USER-Participation), and satisfaction with participation. Life-H provides a profile of 6 domain scores and the USER-Participation a total score per dimension. Compared with the USER-Participation, the Life-H contains more specific items, more items not-applicable to many participants and more ceiling effects. Total scores on the accomplishment/restrictions and satisfaction scales between both instruments showed strong correlation coefficients (0.87 and 0.67, respectively). Correlations between domain scores were stronger within the accomplishment/restrictions scales (range 0.37-0.88) compared with the satisfaction scales (range 0.22-0.68). Conclusions: Compared with the USER-Participation, the Life-H takes more effort to complete but provides a more comprehensive assessment of participation. Participation accomplishment/restrictions scores were more similar between the instruments compared with satisfaction scores. Researchers and clinicians should carefully compare participation instruments in selecting one that matches their purpose.

Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation: a systematic review.

PURPOSE: (1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies. MATERIALS AND METHODS: Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) were conducted. COSMIN guidelines were used to assess clinimetric properties and methodological quality of studies. RESULTS: (1) 154 studies published between 2008 and May 2019 were included, in which 48 measures were used, mostly describing negative impact. Thirty measures were used only once and not further described. (2) In general, structural validity, internal consistency, and hypothesis testing were often investigated. Reliability, cross-cultural and criterion validity to a lesser extent, and scale development and content validity were rarely described. Tests of measurement error and responsiveness were exceptional. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire. CONCLUSIONS: There is a wide variety of impact of caregiving measures. The present study provided a detailed overview of what is known about clinimetric characteristics of 18 different measures repeatedly used in research. The overview provides clinicians a guidance of appropriate measure selection. PROSPERO REGISTRATION: CRD42018094796IMPLICATIONS FOR REHABILITATIONClinicians should be aware that information about measure development and clinimetric properties for most measures used to assess impact of informal caregiving is incomplete.Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire.This overview of clinimetric properties provides clinicians guidance for selection of an appropriate measure.

Participation and autonomy in the first 10 months after diagnosis of ALS: a longitudinal study.

Introduction: More insight is needed into participation in daily activities and autonomy among patients with amyotrophic lateral sclerosis (ALS). Aims of this study were (1) to describe the course of participation restrictions and autonomy in participation during the first 10 months after diagnosis; (2) to study the influence of the rate of ALS progression on the course of participation. Methods: Secondary analysis of data from the longitudinal multicenter FACTS-2-ALS study. Self-report questionnaires were administered at inclusion (T0; n = 71), at 4 months (T1), 7 months (T2), 10 months (T3) after inclusion. Median duration of follow-up was 10.0 months. Participation restrictions were assessed using the sum of the Mobility Range and Social Behavior subscales of the Sickness Impact profile-68 (SIPSOC). Autonomy in participation was assessed using the Impact on Participation and Autonomy (IPA) Questionnaire. Fast disease progression was defined as an increase of 1.1 points per month or more on the ALS Functional Rating Scale. Results: Patients reported participation restrictions in all subscales while having mild physical limitations. There was a decrease of participation over time (restrictions and autonomy). This decrease was greatest in patients with fast disease progression. Disease progression negatively influenced movement-related participation more than social interaction domains. Rate of disease progression was more strongly related to SIPSOC scores compared to IPA scores. Discussion: Preserving participation may be an important determinant of quality of care for patients with ALS. Rate of progression of the disease should be taken into account as it was found to be significantly associated with the level of participation.

Appraisals and coping mediate the relationship between resilience and distress among significant others of persons with spinal cord injury or acquired brain injury: a cross-sectional study.

BACKGROUND: Many significant others of persons with serious conditions like spinal cord injury (SCI) and acquired brain injury (ABI) report high levels of psychological distress. In line with the stress-coping model, the aim of the present study was to investigate the relationship between personal resource resilience and psychological distress, and whether appraisals of threat and loss, and passive coping mediate this relationship. METHODS: Significant others (n = 228) of persons with SCI or ABI completed questionnaires shortly after admission to first inpatient rehabilitation after onset of the condition. The questionnaire included measures to assess psychological distress (Hospital Anxiety and Depression Scale), resilience (Connor-Davidson Resilience Scale-10), appraisals (Appraisals of Life Events scale, threat and loss) and passive coping (Utrecht Coping List). The PROCESS tool was used to test the presence of mediation. Confounding and differences between SCI and ABI were investigated. RESULTS: High levels of psychological distress among significant others were found (34-41%). Fifty-five percent of the variance in psychological distress was explained by the relationship between resilience and psychological distress. This relationship was mediated by appraisals of threat and loss, and passive coping. The relationship between resilience and psychological distress was similar in the SCI and ABI groups. CONCLUSIONS: The results of our study indicate that appraisals of threat and loss and passive coping are mediating factors in the relationship between resilience and psychological distress. It seems useful to investigate if interventions focussing on psychological factors like resilience, appraisal and coping are effective to prevent or reduce psychological distress among significant others of persons with SCI or ABI. TRIAL REGISTRATION: Dutch trial register NTR5742. Registered January 9, 2016.

Family group decision-making interventions in adult healthcare and welfare: a systematic literature review of its key elements and effectiveness.

BACKGROUND: Family group decision-making (FGDM) is a structured decision-making process, aiming to shift the balance of power from professional towards the person in need and their family. It differentiates from other family-centred meetings by the presence of three key elements: (1) plan with actions/goals, (2) family driven, (3) three phases of meetings gradually increasing empowerment. FGDM studies are increasing in different settings in adult healthcare/welfare, although effectiveness is unknown at this date. OBJECTIVES: (1) to systematically review the presence of the three FGDM key elements in family-centred interventions in adult care and welfare, (2) to evaluate the effectiveness of FGDM interventions. DESIGN: Systematic review. DATA SOURCES AND ELIGIBILITY CRITERIA: A total of 14 relevant electronic databases and 1 academic search machine were searched until February 2018. First, family-centred studies were selected with controlled trial designs in adult healthcare/welfare. Second, interventions were categorised as FGDM if all three key elements were present. DATA EXTRACTION AND SYNTHESIS: Studies were examined concerning their (1) characteristics (2) quality/level of evidence (3) presence of FGDM key elements and (4) results. RESULTS: Six articles from three studies on family-centred interventions were selected from a total of 1680 articles. All were of low quality. One study (two articles) met all criteria for an FGDM intervention, describing the efficacy of family group conferences among social welfare recipients on mental health outcomes. Although the intervention group showed significantly better outcomes after 16-23 weeks; no differences were seen at the 1-year follow-up. CONCLUSIONS: Controlled studies of both family-centred interventions and FGDM are still low in quantity and quality. No conclusions on FGDM effectiveness can be drawn. Further high-quality intervention studies are required to evaluate the impact of FGDM on adults in need, including their families; as well as evaluation research detecting possible barriers and facilitators influencing FGDM implementation. PROSPERO REGISTRATION NUMBER: CRD42017077585.

Effects of family group conferences among high-risk patients of chronic disability and their significant others: study protocol for a multicentre controlled trial.

INTRODUCTION: Many patients and family members experience a large gap between the protected environment during inpatient medical rehabilitation and life in the community after discharge. They feel insufficiently prepared to cope with the consequences of their disability in daily life. This study protocol describes the design measuring the effectiveness and implementation of family group conferences on the empowerment of patients with a high risk of chronic disability and their significant others. METHODS AND ANALYSIS: A multicentre controlled trial will be carried out in 12 rehabilitation centres in the Netherlands. A total of 328 clinically admitted patients will participate (≥18 years, diagnosed with acquired brain injury, spinal cord injury or leg amputation), and their significant others will be included. During three family group conferences, supported by the social worker, the patient, significant other and their social network will be stimulated in collaboration, to set up participation goals, determine the needed help and make a concrete action plan. Self-reported questionnaires will be collected at baseline, clinical discharge, and 3 months and 6 months following clinical discharge. Empowerment as the primary outcome is operationalised as self-efficacy and participation. Secondary outcome measures are psychological (eg, coping, neuroticism) and environmental (eg, family functioning, social support) factors. This is the first controlled trial evaluating the effectiveness of family group conferences in rehabilitation medicine among adult patients and their significant others, providing us with knowledge in improving rehabilitation care. ETHICS AND DISSEMINATION: This study has been approved by the Medical Ethics Committee of the University Medical Center Utrecht (number 15-617/C). The results will be published in peer-reviewed journals and presented in local, national and international conferences. TRIAL REGISTRATION NUMBER: NTR5742; Pre-results.

Relationship between impulsivity, snack consumption and children's weight.

BACKGROUND: Childhood overweight is a public health problem associated with psychosocial and physical problems. Personality traits, such as impulsivity, may contribute to the development of overweight. OBJECTIVE: This study examines 1) the association between general impulsivity traits (reward sensitivity and disinhibition) and children's weight, 2) the association between impulsivity traits and unhealthy snack consumption, and 3) the potential mediating role of unhealthy snack consumption in the relationship between impulsivity traits and children's weight. METHODS: Included were 1,377 parent-child dyads participating in the IVO Nutrition and Physical Activity Child cohorT (INPACT). Children had a mean age of 10 years. Parents completed a questionnaire to measure children's unhealthy snack consumption. Children completed a door-opening task to assess reward sensitivity and completed a questionnaire to measure disinhibition. Children's height and weight were measured to calculate their BMI z-scores. Cross-sectional linear regression analyses were performed to test the associations. RESULTS: Disinhibition was positively associated with unhealthy snack consumption but not with BMI z-scores. Reward sensitivity was not related to unhealthy snack consumption or to BMI z-scores. CONCLUSIONS: No evidence was found for a mediating effect of unhealthy snack consumption in the relation between impulsivity traits and children's weight. However, disinhibition appears to have a negative influence on children's unhealthy snack consumption. Future research focusing on food-related impulsivity in addition to general impulsivity will provide additional insight into factors that influence children's unhealthy snack consumption and weight.