Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals.

BACKGROUND: Gastrostomy is recommended in amyotrophic lateral sclerosis for long-term nutritional support, however, people with amyotrophic lateral sclerosis and healthcare professionals perceive decision-making as complex. METHOD: To explore their perspectives on decision-making regarding gastrostomy, we used semi-structured interviews with people with amyotrophic lateral sclerosis, who had made a decision, and their caregivers; healthcare professionals were interviewed separately. Interviews were transcribed and analyzed thematically. RESULTS: In 14 cases, 13 people with amyotrophic lateral sclerosis and 12 caregivers were interviewed; and in 10 of these cases, 5 healthcare professionals. Participants described decision-making on gastrostomy as a continuous process of weighing (future) clinical need against their values and beliefs in coming to a decision to accept or reject gastrostomy, or to postpone decision-making, while being supported by loved ones and healthcare professionals. Participants described gastrostomy as inevitable, but retained agency through control over the timing of decision-making. They said physical necessity, experiences of loss and identity, and expectations about gastrostomy placement were important factors in decision-making. Decision-making was described as a family affair, with caregivers supporting patient choice. healthcare professionals supported people with amyotrophic lateral sclerosis during the decision-making process and respected their autonomy and values. People with amyotrophic lateral sclerosis stressed the importance of adequate information on the procedure and the benefits. CONCLUSION: People with amyotrophic lateral sclerosis feel in control of decision-making on gastrostomy if they are able to make their own choice at their own pace, supported by loved ones and healthcare professionals. Person-centered decision-making on gastrostomy requires early information exchange and repeated discussions with people with amyotrophic lateral sclerosis and their caregivers, incorporating their values and respecting patient choice.

Frequency of euthanasia, factors associated with end-of-life practices, and quality of end-of-life care in patients with amyotrophic lateral sclerosis in the Netherlands: a population-based cohort study.

BACKGROUND: Amyotrophic lateral sclerosis is a progressive and lethal neurodegenerative disease that is at the forefront of debates on regulation of assisted dying. Since 2002, when euthanasia was legally regulated in the Netherlands, the frequency of this end-of-life practice has increased substantially from 1·7% of all deaths in 1990 and 2005 to 4·5% in 2015. We aimed to investigate whether the frequency of euthanasia in patients with amyotrophic lateral sclerosis had similarly increased since 2002, and to assess the factors associated with end-of-life practices and the quality of end-of-life care in patients with this disease. METHODS: Using data from the Netherlands ALS registry, we did a population-based cohort study of clinicians and informal caregivers of patients with amyotrophic lateral sclerosis to assess factors associated with end-of-life decision making and the quality of end-of-life care. We included individuals who were diagnosed with amyotrophic lateral sclerosis according to the revised El-Escorial criteria, and who died between Jan 1, 2014, and Dec 31, 2016. We calculated the frequency of euthanasia in patients with amyotrophic lateral sclerosis from reports made to euthanasia review committees (ERCs) between 2012 and 2020. Results were compared with clinic-based survey studies conducted in 1994-2005. End-of-life practices were end-of-life decisions by a clinician when hastening of death was considered as the potential, probable, or definite effect comprising euthanasia, physician-assisted suicide, ending of life without explicit request, forgoing life-prolonging treatment, and intensified alleviation of symptoms. FINDINGS: Between Jan 1, 2012, and Dec 31, 2020, 4130 reports of death from amyotrophic lateral sclerosis were made to ERCs, of which 1014 were from euthanasia or physician-assisted suicide (mean frequency 25% [SD 3] per year). Sex and gender data were unavailable from the ERC registry. Of 884 patients with amyotrophic lateral sclerosis who died between Jan 1, 2014, and Dec 31, 2016, their treating clinician was identified for 731 and a caregiver was identified for 741, of whom 356 (49%) and 450 (61%), respectively, agreed to participate in the population-based survey study. According to clinicians, end-of-life practices were chosen by 280 (79%) of 356 patients with amyotrophic lateral sclerosis who died. The frequency of euthanasia in patients with amyotrophic lateral sclerosis in 2014-16 (141 [40%] of 356 deaths in patients with amyotrophic lateral sclerosis) was higher than in 1994-98 (35 [17%] of 203) and 2000-05 (33 [16%] of 209). Median survival of patients with amyotrophic lateral sclerosis from diagnosis was 15·9 months (95% CI 12·6-17·6) for those who chose euthanasia and 16·1 months (13·4-19·1) for those who did not choose euthanasia (hazard ratio 1·07, 95% CI 0·85-1·34; p=0·58). According to caregivers, compared with other end-of-life practices, patients with amyotrophic lateral sclerosis choosing euthanasia commonly reported reasons to hasten death as no chance of improvement (53 [56%] of 94 patients who chose euthanasia vs 28 [39%] of 72 patients who chose other end-of-life practices), loss of dignity (47 [50%] vs 15 [21%]), dependency (34 [36%] vs five [7%]), and fatigue or extreme weakness (41 [44%] vs 14 [20%]). According to caregivers, people with amyotrophic lateral sclerosis-whether they chose euthanasia or did not-were satisfied with the general quality (83 [93%] of 89 patients who chose euthanasia vs 73 [86%] of 85 patients who did not) and availability (85 [97%] of 88 vs 81 [91%] of 90) of end-of-life care. INTERPRETATION: The proportion of patients with amyotrophic lateral sclerosis who chose euthanasia in the Netherlands has increased since 2002. The choice of euthanasia was not associated with disease or patient characteristics, depression or hopelessness, or the availability or quality of end-of-life care. The choice of euthanasia had no effect on overall survival. Future studies could focus on the effect of discussing end-of-life options on quality of life as part of multidisciplinary care throughout the course of the disease, to reduce feelings of loss of autonomy and dignity in patients living with amyotrophic lateral sclerosis. FUNDING: Netherlands ALS Foundation.

Chronic inflammatory neuropathies and their impact on activities and participation.

BACKGROUND: Chronic inflammatory demyelinating polyneuropathy (CIDP) and multifocal motor neuropathy (MMN) are inflammatory neuropathies that can lead to considerable limitations in daily activities and in social participation. However, systematic evaluation of these self-reported limitations is lacking in the currently available studies. Understanding the impact of these diagnoses on patients' life is important to optimize management strategies. AIM: To systematically assess the self-reported limitations in activities and participation and determine associated factors. METHODS: A survey study was conducted in 2021 in a cohort of patients with CIDP (n = 257) and MMN (n = 148) from a university hospital. The survey included the Rasch-built Overall Disability Scale and the Utrecht Scale for Evaluation of Rehabilitation-Participation, questions addressing personal and disease-related factors and treatment. Multivariate linear regression analysis was used to determine associations with disease-related and personal factors. RESULTS: A total of 147 CIDP and 103 MMN patients responded. Limitations in activities were reported by 70.7% CIDP and 52.2% MMN patients with moderate to severe limitations in 22.4% and 5.9% patients, respectively. Participation restrictions were reported by 50% of CIDP and 40% of MMN patients, nevertheless satisfaction with participation was high. Fatigue, pain and resilience were independently associated with limitations in activities and satisfaction with participation in CIDP patients. CONCLUSIONS: Activity limitations and restrictions in participation are common in CIDP patients and to a lesser extent in MMN patients. Fatigue, pain and resilience independently contributed to perceived limitations in CIDP patients. Referral to a rehabilitation physician is warranted to address these limitations appropriately.

Burden, anxiety and depressive symptoms in partners - course and predictors during the first two years after stroke.

BACKGROUND: Partners of patients with stroke are at high risk for burden, anxiety and depressive symptoms. Previous studies have reported contradictory results and did not investigate these three courses simultaneously. In this study we comprehensively studied the courses and predictors of burden, anxiety and depressive symptoms in partners of patients with stroke during the first two years after stroke. They were analyzed as outcomes as well as predictors for each other. METHODS: Six general hospitals recruited 215 patients with stroke and their partners for a longitudinal cohort study. Mixed model analyses were performed for burden (CSI), anxiety (HADS-A) and depressive symptoms (HADS-D) as time-varying outcome variables, measured at four time points during two years after stroke. RESULTS: Burden and depressive symptoms did not significantly change over time, whereas anxiety symptoms initially decreased followed by an increase. Higher burden was predicted by partners' younger age, higher education, more symptoms of anxiety and depression, and by patients' greater stroke severity, lower cognitive functioning and more symptoms of anxiety and depression. More anxiety symptoms were predicted by higher burden, more depressive symptoms, and lower self-efficacy of the partner. More depressive symptoms were predicted by older age, higher burden, more symptoms of anxiety, less proactive coping strategies of the partner, and more depressive symptoms of the patients. CONCLUSIONS: Burden, anxiety and depressive symptoms are interrelated and become chronic in partners of patients with stroke. It is important to screen partners early after stroke to identify partners who are at risk for negative outcomes.

Current practices and barriers in gastrostomy indication in amyotrophic lateral sclerosis: a survey of ALS care teams in The Netherlands.

OBJECTIVE: To describe current practices and barriers and support needs in gastrostomy indication and decision-making amongst rehabilitation physicians of ALS care teams in the Netherlands. METHODS: Cross-sectional online survey of rehabilitation physicians of ALS care teams in the Netherlands. Survey items covered current practices in timing of indication (i.e. indicators and criteria), goals, initiating discussion about gastrostomy, and criteria for preferred method of placement; and barriers and support needs in indication and decision-making. Descriptive analysis was used for quantitative responses, thematic, and content analysis for qualitative data. RESULTS: Twenty-nine physicians (41%) of 27 ALS care teams (71%) responded. Timing of indication: physicians agreed on important indicators but not cutoff values/criteria. Goals: optimizing nutritional status (100%), ensuring safe food-intake (72%), and reducing effort of meals (59%). Initiating discussion about gastrostomy: 52% introduces the topic early after diagnosis, 48% at indication. Criteria for method of placement included physician preference (69%), availability of service (21%), lower complication risk (17%), contraindication (59%), and patient preference (24%). Reported barriers (69% of respondents) were: patient readiness (52%), timing of indication (31%), and organizational barriers (18%). Support needs (62%): evidence-based timing of indication (35%) and tailored patient education (31%). CONCLUSIONS: There is practice variation in the timing of first introduction of gastrostomy and preferred method of placement, but agreement on goals and indicators . More evidence on optimal timing of gastrostomy placement is needed. However, until then early and regular discussion of the topic of gastrostomy and better patient information may promote patient readiness and support patient choice.

Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study.

The ENCALS survival prediction model offers patients with amyotrophic lateral sclerosis (ALS) the opportunity to receive a personalized prognosis of survival at the time of diagnosis. We explored experiences of patients with ALS, caregivers, and physicians with discussing personalized prognosis through interviews with patients and their caregivers, and in a focus group of physicians. Thematic analysis revealed four themes with seven subthemes; these were recognized by the focus group. First, tailored communication: physician's communication style and information provision mediated emotional impact and increased satisfaction with communication. Second, personal factors: coping style, illness experiences, and information needs affected patient and caregiver coping with the prognosis. Third, emotional impact ranged from happy and reassuring to regret. Fourth, regaining control over the future: participants found it helpful in looking towards the future, and emphasized the importance of quality over quantity of life. Personalized prognosis can be discussed with minimal adverse emotional impact. How it is communicated-i.e., tailored to individual needs-is as important as what is communicated-i.e., a good or poor prognosis. Discussing personalized prognosis may help patients with ALS and their caregivers regain control over the future and facilitate planning of the future (care). For many patients, quality of life matters more than quantity of time remaining.

Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide.

BACKGROUND: Personalized ENCALS survival prediction model reliably estimates the personalized prognosis of patients with amyotrophic lateral sclerosis. Concerns were raised on discussing personalized prognosis without causing anxiety and destroying hope. Tailoring communication to patient readiness and patient needs mediates the impact of prognostic disclosure. We developed a communication guide to support physicians in discussing personalized prognosis tailored to individual needs and preferences of people with ALS and their families. METHODS: A multidisciplinary working group of neurologists, rehabilitation physicians, and healthcare researchers A) identified relevant topics for guidance, B) conducted a systematic review on needs of patients regarding prognostic discussion in life-limiting disease, C) drafted recommendations based on evidence and expert opinion, and refined and finalized these recommendations in consensus rounds, based on feedback of an expert advisory panel (patients, family member, ethicist, and spiritual counsellor). RESULTS: A) Topics identified for guidance were 1) filling in the ENCALS survival model, and interpreting outcomes and uncertainty, and 2) tailoring discussion to individual needs and preferences of patients (information needs, role and needs of family, severe cognitive impairment or frontotemporal dementia, and non-western patients). B) 17 studies were included in the systematic review. C) Consensus procedures on drafted recommendations focused on selection of outcomes, uncertainty about estimated survival, culturally sensitive communication, and lack of decisional capacity. Recommendations for discussing the prognosis include the following: discuss prognosis based on the prognostic groups and their median survival, or, if more precise information is desired, on the interquartile range of the survival probability. Investigate needs and preferences of the patients and their families for prognostic disclosure, regardless of cultural background. If the patient does not want to know their prognosis, with patient permission discuss the prognosis with their family. If the patient is judged to lack decisional capacity, ask the family if they want to discuss the prognosis. Tailor prognostic disclosure step by step, discuss it in terms of time range, and emphasize uncertainty of individual survival time. CONCLUSION: This communication guide supports physicians in tailoring discussion of personalized prognosis to the individual needs and preferences of people with ALS and their families.

Using patient-reported symptoms of dyspnea for screening reduced respiratory function in patients with motor neuron diseases.

BACKGROUND: Poor monitoring of respiratory function may lead to late initiation of non-invasive ventilation (NIV) in patients with motor neuron diseases (MND). Monitoring could be improved by remotely assessing hypoventilation symptoms between clinic visits. We aimed to determine which patient-reported hypoventilation symptoms are best for screening reduced respiratory function in patients with MND, and compared them to the respiratory domain of the amyotrophic lateral sclerosis functional rating scale (ALSFRS-R). METHODS: This prospective multi-center study included 100 patients with MND, who were able to perform a supine vital capacity test. Reduced respiratory function was defined as a predicted supine vital capacity ≤ 80%. We developed a 14-item hypoventilation symptom questionnaire (HYSQ) based on guidelines, expert opinion and think-aloud interviews with patients. Symptoms of the HYSQ were related to dyspnea, sleep quality, sleepiness/fatigue and pneumonia. The diagnostic performances of these symptoms and the ALSFRS-R respiratory domain were determined from the receiver operating characteristic (ROC) curves, area under the curve (AUC), sensitivity, specificity, predictive values and accuracy. RESULTS: Dyspnea-related symptoms (dyspnea while eating/talking, while lying flat and during light activity) were combined into the MND Dyspnea Scale (MND-DS). ROC curves showed that the MND-DS had the best diagnostic performance, with the highest AUC = 0.72, sensitivity = 75% and accuracy = 71%. Sleep-quality symptoms, sleepiness/fatigue-related symptoms and the ALSFRS-R respiratory domain showed weak diagnostic performance. CONCLUSION: The diagnostic performance of the MND-DS was better than the respiratory domain of the ALSFRS-R for screening reduced respiratory function in patients with MND, and is, therefore, the preferred method for (remotely) monitoring respiratory function.

Telehealth as part of specialized ALS care: feasibility and user experiences with "ALS home-monitoring and coaching".

Objective: To evaluate the use of telehealth as part of specialized care for patients with amyotrophic lateral sclerosis (ALS) and the user experiences of patients and healthcare professionals. Methods: Fifty patients with ALS were recruited from a single specialist center and used telehealth, consisting of an ALS-app for self-monitoring and messaging, alerts for symptom-worsening, and nurse practitioner follow-up. Patients self-monitored their well-being (daily report), body weight (weekly) and functional status (monthly). The use of the telehealth service was evaluated through adoption rate, dropout rate and adherence to self-monitoring. User-experiences were collected through online surveys among 23 patients and nine healthcare professionals, and interviews with 12 patients. Results: The adoption rate was 80%, dropout rate 4% and median follow-up was 11 months. Good adherence was seen in 49% of patients for well-being, 83% for body weight and 87% for functional assessment. For patients who discontinued using telehealth due to the end-of-life phase, median time between last measurement and death was 19 days. The majority of patients experienced using telehealth as easy, helpful, not burdensome, and reported satisfaction with flexible clinic visits and the continuity of care. Healthcare professionals reported that telehealth was of added value in ALS-care. Conclusions: ALS-care supplemented by home-monitoring and nurse practitioner follow-up was shown to be suitable and widely accepted by patients and healthcare professionals in our ALS clinic. Success factors were low self-monitoring burden, a user-friendly platform and the provision of personalized feedback. Further research is needed to replicate these findings in other ALS clinics.

Return to work after mild-to-moderate stroke: work satisfaction and predictive factors.

A large proportion of stroke patients are unable to return to work (RTW), although figures vary greatly. A total of 121 mild-to-moderate stroke patients, who had a paid job at the time of their stroke were included (a) to quantify RTW and work satisfaction one-year post-stroke (using the Utrecht Scale for Evaluation of Rehabilitation-Participation) and (b) to determine factors predicting RTW post-stroke, based on stroke-related, personal and neuropsychological variables. Half of the patients were not in work (28%) or were working less (22%) than pre-stroke. Ninety percent of those in fulltime employment post-stroke were satisfied with their occupational situation, against 36% of the unemployed participants. In regards to factors predicting RTW, global cognitive functioning (r = .19, Montreal Cognitive Assessment) and depressive symptoms (r = -.16, Hospital Anxiety and Depression Scale) at two months post-stroke onset were associated with return to work within one year. Only global cognitive functioning was an independent predictor of RTW (11.3% variance, p = .013). Although the explained variance was not that high, neuropsychological factors probably play a pivotal role in returning to work and should be taken into account during rehabilitation after mild and moderate stroke.

A validation study of the Caregiver Mastery Scale for partners of patients with acquired brain injury.

OBJECTIVE: To validate the Caregiver Mastery Scale for partners of patients with acquired brain injury. DESIGN: The score distributions, internal consistency and convergent validity of the Caregiver Mastery Scale were determined. SUBJECTS: A total of 92 partners (53% male, age 62 years) of patients with acquired brain injury (91% stroke) discharged from inpatient rehabilitation (time since injury 32 months). MAIN MEASURES: Outcome measure: Caregiver Mastery Scale. Reference measures: Caregiver Strain Index, Hospital Anxiety and Depression Scale and CarerQoL. RESULTS: The Caregiver Mastery Scale has a normal distribution, with no floor or ceiling effects. Its internal consistency is acceptable (Cronbach's alpha: 0.75). The convergent validity analyses confirmed our hypothesis that higher scores on the Caregiver Mastery Scale correlate with less burden, lower levels of anxiety and depression and greater well-being. Furthermore, partners scoring high on the Caregiver Mastery Scale mostly scored below the clinical cut-off scores on the Caregiver Strain Index and the anxiety and depression subscales of the Hospital Anxiety and Depression Scale, whereas partners scoring low on the Caregiver Mastery Scale were more likely to score above the cut-off points. CONCLUSION: The Caregiver Mastery Scale is a valid instrument to assess the caregiver mastery of partners of patients with acquired brain injury.

Caregiver burden and emotional problems in partners of stroke patients at two months and one year post-stroke: Determinants and prediction.

OBJECTIVES: (a) To determine levels of and factors explaining partners' burden, anxiety and depressive symptoms at two months post-stroke, (b) to predict partners' burden, anxiety and depressive symptoms at one year post-stroke based on patient and partner characteristics available at two months post-stroke. METHODS: Prospective cohort study. Partners of stroke patients (N=183) were included. Main outcome measures were the Caregiver Strain Index and the Hospital Anxiety and Depression Scale. RESULTS: Many partners experienced high burden, anxiety and depressive symptoms. At two months post-stroke, these outcomes were associated with the partner variables: age, relationship satisfaction, pro-active coping, self-efficacy, everyday social support, burden, anxiety and depressive symptoms; and the patient variables: stroke severity and depressive symptoms. Partner outcomes at one year post-stroke were mainly predicted by the level of these outcomes at two months post-stroke. CONCLUSIONS: Partner outcomes at two months post-stroke predict to a large degree partner outcomes at one year post-stroke. PRACTICE IMPLICATIONS: Measuring partners' burden and anxiety and depressive symptoms in the post-acute phase is recommended to trace partners at risk of long-term burden and emotional problems.

Course of social support and relationships between social support and patients' depressive symptoms in the first 3 years post-stroke.

OBJECTIVE: To describe the course of social support (everyday support, support in problem situations and esteem support) from initial inpatient rehabilitation until 3 years post-stroke and to examine the cross-sectional and longitudinal relationships of social support with depressive symptoms. DESIGN: Prospective cohort study. SUBJECTS: A total of 249 stroke patients. METHODS: Depressive symptoms were measured with the Center of Epidemiologic Studies Depression Scale. Perceived social support was assessed with the Social Support List-Interaction. Pearson correlations and multilevel analysis were performed. RESULTS: More than one-third of participants had depressive symptoms. Social support and its 3 subtypes declined significantly over time. Divergent relationships were found between subtypes of social support and depressive symptoms. Everyday support and esteem support had negative associations with depressive symptoms, whereas support in problem situations had a positive association. Social support in problem situations was a predictor of depressive symptoms over time. No effect-modification by participants with physical or cognitive limitations was found. CONCLUSION: Stroke survivors experience a decline in social support over time. Various subtypes of support show distinct relationships with depressive symptoms. Healthcare professionals should focus on the various subtypes of support when supporting patients to improve and maintain an adequate social support network.

Measuring negative and positive caregiving experiences: a psychometric analysis of the Caregiver Strain Index Expanded.

OBJECTIVE: To compare the psychometric properties of the Caregiver Strain Index Expanded with those of the original Caregiver Strain Index among partners of stroke patients. DESIGN AND SUBJECTS: Cross-sectional validation study among 173 caregivers of stroke patients six months post-stroke. OUTCOME MEASURE: Caregiver Strain Index Expanded. Reference measures: Hospital Anxiety and Depression Scale, two questions on life satisfaction, Barthel Index and Montreal Cognitive Assessment. Additionally, National Institutes of Health Stroke Scale. RESULTS: Neither the Caregiver Strain Index Expanded nor the original Caregiver Strain Index showed floor or ceiling effects. The sum score of the positive items showed a ceiling effect and was skewed to the right (2.20). Principal component analysis revealed no clear underlying item clustering. Alpha values of the Caregiver Strain Index Expanded and the original Caregiver Strain Index were good (0.82 and 0.83), but the alpha value of the positive subscale of the Caregiver Strain Index Expanded was too low (0.51). Convergent validity was confirmed for the Caregiver Strain Index Expanded, the original Caregiver Strain Index and the positive subscale. The Caregiver Strain Index Expanded and the original Caregiver Strain Index showed nearly identical correlations with the reference measures. Negative caregiving experiences were more strongly related to partners' mood and life satisfaction than positive caregiving experiences. In the regression analyses, the positive subscale showed little added value in predicting partners' mood and life satisfaction. CONCLUSION: The addition of five positively phrased items does not improve the psychometric properties of the Caregiver Strain Index.

Associations between social support and stroke survivors' health-related quality of life--a systematic review.

OBJECTIVE: Social support to stroke survivors has been recognized as an important determinant of their health-related quality of life (HRQoL), but this relationship is not clarified to date. More insight in the relationships between various types (i.e. emotional, instrumental, or informational support) and sources (i.e. partner, children) of social support and HRQoL might target post-stroke educational and counseling interventions to strengthen patient's social networks and supportive relationships. METHODS: Systematic review. RESULTS: 11 original articles could be included. Most of these articles studied the overall perceived social support without further specification of type or source. They show a positive relation between perceived social support and stroke survivors' HRQoL. Relations between perceived social support and HRQoL seems to be more often significant and were stronger than relationships between specific social support types or sources and HRQoL. CONCLUSION: Due to the small number of studies and the heterogeneity in methods of assessing social support, a clear statement about the specific influence of social support source or type could not be made. PRACTICE IMPLICATIONS: Attention should be paid to promoting social support on the short and long term. Further research is needed to clarify the influence of social support type and source.

Positive caregiving experiences are associated with life satisfaction in spouses of stroke survivors.

BACKGROUND: Studies into caregivers usually have been focused on negative caregiving experiences. This study is based on the hypotheses that positive caregiving experiences (i.e., self-esteem derived from caregiving) of spouses of stroke patients also need to be taken into account, and that these are related to life satisfaction in 2 ways: first, by a direct association with life satisfaction, and second, indirectly by way of a buffer effect (i.e., by compensating for the impact of negative caregiving experiences on life satisfaction). METHODS: In this cross-sectional study (n = 121) 3 years poststroke, the Caregiver Reaction Assessment was used to assess caregiver burden (Burden) and self-esteem derived from caregiving (Self-esteem scale). Life satisfaction was measured with the Life Satisfaction Questionnaire (LiSat-9). Spearman correlations and regression analyses were performed. RESULTS: Both Self-esteem and Burden scores were associated with life satisfaction (correlation coefficients 0.35 and -0.74, respectively). An interaction effect was also found (P = .006); spouses who perceived both high Burden and high Self-esteem reported significantly higher life satisfaction scores (mean 4.2, standard deviation [SD] 0.5) than spouses who perceived high Burden but low Self-esteem (mean 3.6, SD 0.7). CONCLUSIONS: Positive caregiving experiences are related to spouses' life satisfaction 3 years poststroke and mediate the impact of burden on life satisfaction. Positive caregiving experiences should get more attention in rehabilitation research and practice.