Carin D. Schröder

The influence of psychological factors on Health‐Related Quality of Life after stroke: a systematic review

Background and purpose Many stroke patients experience problems with health-related quality of life, but much of the variance of health-related quality of life after stroke remains unexplained. Health-related quality of life may be influenced by psychological factors, as these factors reflect the way people approach situations and react to stressful situations. The aim of this study was to systematically examine the relationship between psychological factors and health-related quality of life after stroke. Summary of review A systematic literature search was conducted in online databases PubMed, Embase, PsycINFO, and CINAHL in November 2011. A total of nine studies were included. Personality (i.e. problems of temperament and personality functions and neuroticism) was moderately negatively associated with health-related quality of life (r = 0·26–0·49). Coping (i.e. situational and personal adaptation), internal locus of control, self-worth (i.e. self-esteem and self-efficacy), and hope and optimism were moderately positively associated with health-related quality of life (r = 0·026–0·81). No evidence was found for an association between extraversion and health-related quality of life. Conclusions There is still a paucity of studies on psychological determinants of poststroke health-related quality of life. The reviewed studies supported the importance of psychological factors, but further research is needed to supplement the available evidence and to examine how psychological factors can be modified to improve health-related quality of life, and at what moment after the stroke these interventions should be given.

Effects of aerobic exercise therapy and cognitive behavioural therapy on functioning and quality of life in amyotrophic lateral sclerosis: protocol of the FACTS-2-ALS trial

BackgroundAmyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex, leading to muscle weakness. Muscle weakness may result in the avoidance of physical activity, which exacerbates disuse weakness and cardiovascular deconditioning. The impact of the grave prognosis may result in depressive symptoms and hopelessness. Since there is no cure for ALS, optimal treatment is based on symptom management and preservation of quality of life (QoL), provided in a multidisciplinary setting. Two distinctly different therapeutic interventions may be effective to improve or preserve daily functioning and QoL at the highest achievable level: aerobic exercise therapy (AET) to maintain or enhance functional capacity and cognitive behavioural therapy (CBT) to improve coping style and cognitions in patients with ALS. However, evidence to support either approach is still insufficient, and the underlying mechanisms of the approaches remain poorly understood. The primary aim of the FACTS-2-ALS trial is to study the effects of AET and CBT, in addition to usual care, compared to usual care alone, on functioning and QoL in patients with ALS.Methods / DesignA multicentre, single-blinded, randomized controlled trial with a postponed information model will be conducted. A sample of 120 patients with ALS (1 month post diagnosis) will be recruited from 3 university hospitals and 1 rehabilitation centre. Patients will be randomized to one of three groups i.e. (1) AET + usual care, (2) CBT + usual care, (3) Usual care. AET consists of a 16-week aerobic exercise programme, on 3 days a week. CBT consists of individual psychological support of patients in 5 to 10 sessions over a 16-week period. QoL, functioning and secondary outcome measures will be assessed at baseline, immediately post intervention and at 3- and 6-months follow-up.DiscussionThe FACTS-2-ALS study is the first theory-based randomized controlled trial to evaluate the effects, and the maintenance of effects, of AET and CBT on functioning and QoL in patients with ALS. The results of this study are expected to generate new evidence for the effect of multidisciplinary care of persons with ALS.Trial registrationDutch Trial Register NTR1616.

Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: a systematic review

ObjectiveTo systematically identify and appraise evidence on associations between psychological factors (moods, beliefs, personality) and Health-related QoL (HRQoL) and/or global QoL in patients with Amyotrophic Lateral Sclerosis (ALS).MethodsA systematic review was conducted in several online databases (PsycINFO, EMBASE, PubMed and CINAHL) up to October 2015. Articles were included if they reported associations between psychological factors (moods, beliefs and personality) and HRQoL and/or global QoL in an ALS population. The search was limited to empirical studies, published in English, which provided quantitative data. The methodological quality of the included articles was assessed.ResultsIn total, 22 studies were included. Mood was investigated in 14 studies, beliefs in 11 studies and personality in one study. Fifteen different psychological factors were extracted and assessed using 24 different measures. Twelve different QoL measures were used in the selected studies, subdivided into seven different HRQoL measures and five different global QoL measures. Higher levels of anxiety and depression appeared to be related to a poorer HRQoL, whereas a higher level of religiosity seemed to be associated with better global QoL. No conclusive associations were found for confusion-bewilderment (mood), spirituality, mindfulness, coping styles, hopelessness, perception of burden, cognitive appraisal (beliefs), neuroticism, extraversion, openness, agreeableness and conscientiousness (personality), due to insufficient or inconsistent evidence. Religiosity and spirituality appeared to become more positively associated over time.ConclusionsOur results suggest that higher levels of anxiety and depression are related to a poorer HRQoL, whereas higher levels of religiosity appeared to be related to better global QoL. Associations might change during the disease course. This review supports the importance of psychological factors with regard to ALS care. Further research is needed to supplement the available evidence and to investigate how psychological factors can be modified to improve QoL.Review registration numberPROSPERO 2015:CRD42015027303

Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial

Our objective was to compare the effects of cognitive behavioural therapy (CBT) and usual care (UC) on quality of life (QoL) in psychologically distressed patients with ALS and their caregivers. We conducted a multicentre randomized controlled trial (RCT). In 16 weeks, patient-carer pairs received five to 10 CBT sessions plus usual care (UC) or UC alone. Outcome measures were SF-36 Mental Component Summary (MCS), ALSAQ-40 Emotional Functioning (EF), Hospital Anxiety and Depression Scale (HADS) and Caregiver Strain Index (CSI). Assessments took place at baseline, four, seven and 10 months. The steering committee decided to stop the trial prematurely and analyse the data due to: 1) slow recruitment (15 patients over 42 months); and 2) the low demand for joint patient-carer CBT sessions. Caregivers, however, expressed an unanticipated demand for individual psychological support. Patients’ ALSAQ-40-EF and caregivers’ SF-36-MCS were significantly better in CBT than UC (p < 0.05). CSI was significantly lower in the CBT than the UC (p < 0.05). In conclusion, CBT might be beneficial to patients and caregivers. The stringent eligibility criteria limited participation rate and consequently the generalizability of results. Future studies should further examine the impact of CBT interventions for patients with ALS and their caregivers.

Correlates of health related quality of life in adult patients with spinal muscular atrophy

Introduction: To improve care for patients with spinal muscular atrophy (SMA), we assessed the physical and mental quality of life (QoL) in 62 adult patients with SMA. Methods: Physical component scores (PCS) and mental component scores (MCS) of the Short Form‐36 Health Survey (SF‐36) were obtained. Correlations with demographics, disease severity, and emotional distress were assessed. We used hierarchical multiple regression analysis to identify determinants of QoL. Results: PCS scores were lower, and MCS scores higher than in the healthy reference population. Patients with milder SMA types reported lower scores on several MCS domains. Motor skills scores and emotional distress explained 16% of the variance in PCS. SMA type and emotional distress explained 10% and 45% of the variance of MCS, respectively. Conclusions: Patients with milder forms of SMA tend to have a reduced mental QoL. Psychological interventions to reduce emotional distress may improve both mental and physical QoL. Muscle Nerve 54: 850–855, 2016

Assessment of the factorial validity and reliability of the ALSFRS-R: a revision of its measurement model

The amyotrophic lateral sclerosis functional rating scale-revised (ALSFRS-R) is a widely used primary outcome measure in amyotrophic lateral sclerosis (ALS) clinical practice and clinical trials. ALSFRS-R items cannot, however, validly be summed to obtain a total score, but constitute domain scores reflecting a profile of disease severity. Currently, there are different measurement models for estimating domain scores. The objective of the present study is, therefore, to derive the measurement model that best fits the data for a valid and uniform estimation of ALSFRS-R domain scores. Data from 1556 patients with ALS were obtained from a population-based register in The Netherlands. A random split of the sample provided a calibration and validation set. Measurement models of the ALSFRS-R were investigated using both exploratory factor analyses and confirmatory factor analyses. The measurement model with a four-factor structure (i.e., bulbar, fine motor, gross motor, and respiratory function), with correlated factors and cross-loading items on dressing and hygiene and turning in bed and adjusting bed clothes on both motor function scales, provided the best fit to the data in both sets. Correlation between factors ranged from weak to modest, confirming that the ALSFRS-R constitutes a profile of four clinically relevant domain scores rather than a total score that expresses disease severity. The internal consistency of the four domain scores was satisfactory. Our revision of the measurement model may allow for a more adequate estimation of disease severity and disease progression in epidemiological studies and clinical trials.

A case series of PLS patients with frontotemporal dementia and overview of the literature

Abstract Objective: Primary lateral sclerosis (PLS) is a rare form of motor neuron disease characterised by UMN degeneration leading to slowly progressive spasticity. Whether it is a separate disease or a subtype of ALS has been debated. In ALS comorbid frontotemporal dementia (FTD) is frequently seen (±15%). However, cognitive and behavioural changes are generally not considered to be a part of PLS. Methods: To report the clinical findings and frequency of PLS patients that developed FTD in a referral-based cohort and provide an overview of the literature. Results: In our cohort six out of 181 (3.3%) PLS patients developed FTD. In the literature a few cases of PLS with FTD have been reported and only a limited number of small studies have investigated cognition in PLS. However, when these studies are summarised a pattern emerges with FTD diagnoses in ±2% and frontotemporal impairment in 22% of patients. Conclusions: These findings suggest that PLS is part of the FTD-MND continuum and would favour viewing it as a subtype of ALS. It is, however, not a restricted (isolated UMN involvement) phenotype.

Do knowledge brokers facilitate implementation of the stroke guideline in clinical practice

BackgroundThe implementation of clinical practice guidelines in rehabilitation practice is often troublesome and incomplete. An intervention to enhance the implementation of guidelines is the knowledge transfer program built around the activities of a knowledge broker (KB).This study investigates the use of KBs to implement guideline recommendations for intensive therapy and physical activity for patients post-stroke in 22 stroke units in hospitals and rehabilitation centers in The Netherlands.Methods/DesignThis study includes a quantitative evaluation with a non controlled pre-post intervention design and a mixed methods process evaluation. From each stroke unit, enterprising nurses and therapists will be recruited and trained as KB. The KB will work for one year on the implementation of the guideline recommendations in their team. To evaluate the effectiveness of the KB, a questionnaire will be administered to patients, health professionals and KBs at baseline (T0) and after one year (T1). Furthermore, semi structured interviews with 5 KBs will be performed at T1.The primary outcome of this implementation project will be the support health professionals give patients to exercise and be physically active, as reported by patients and health professionals themselves. The support immediately after the intervention is compared with the support at the start of the intervention.Additionally we will explore the influence of socio-demographic characteristics of health professionals and determinants identified in the Theory of Planned Behavior (intention, attitude, subjective norm and perceived behavioral control) on the change of supportive behavior of health professionals. Finally, KBs will complete a questionnaire on their own psychological and social demographic characteristics and on organizational conditions needed for health-care improvement such as time, workforce, sponsoring and support from management.DiscussionWith this study we will gain insight in when and why knowledge brokers seem to be effective. Also we will identify determinants that predict which health professionals are susceptible to change their behavior. This study will provide guidance how to implement guidelines and will help to improve stroke rehabilitation services.

Caregiver burden in amyotrophic lateral sclerosis: A systematic review

Background: Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions. Aim: To evaluate the evidence on patient and caregiver factors associated with caregiver burden in amyotrophic lateral sclerosis informal caregivers. Design: A systematic review. Data sources: Four electronic databases were searched up to 2017. Studies that investigated quantitative relations between patient or caregiver factors and caregiver burden were included. The overall quality of evidence for factors was assessed using the Grading of Recommendations Assessment, Development and Evaluation approach. Results: A total of 25 articles were included. High quality of evidence was found for the relation between caregiver burden and the factor “behavioral impairments.” Moderate quality of evidence was found for the relations between caregiver burden and the factors “feelings of depression” of the caregiver and “physical functioning” of the patient. The remaining rated caregiver factors—“feelings of anxiety,” “distress,” “social support,” “family functioning,” and “age”—and patient factors—“bulbar function,” “motor function,” “respiratory function,” “disease duration,” “disinhibition,” “executive functioning,” “cognitive functioning,” “feelings of depression,” and “age”—showed low to very low quality of evidence for their association with caregiver burden. Conclusion: Higher caregiver burden is associated with greater behavioral and physical impairment of the patient and with more depressive feelings of the caregiver. This knowledge enables the identification of caregivers at risk for caregiver burden and guides the development of interventions to diminish caregiver burden.

Participation restrictions in ambulatory ALS patients: Physical and psychological factors.

The aim of this study was to assess the prevalence of participation restrictions in ambulatory patients with amyotrophic lateral sclerosis (ALS) and to identify physical and psychological contributory factors.