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1.
Brain Sci ; 11(12)2021 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-34942899

RESUMO

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.

2.
Artigo em Inglês | MEDLINE | ID: mdl-34486902

RESUMO

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.

3.
BMC Neurol ; 20(1): 446, 2020 Dec 14.
Artigo em Inglês | MEDLINE | ID: mdl-33308184

RESUMO

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.


Assuntos
Esclerose Amiotrófica Lateral , Comunicação , Educação de Pacientes como Assunto/métodos , Relações Médico-Paciente , Revelação da Verdade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico
5.
J Neurol ; 267(11): 3310-3318, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32577867

RESUMO

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.


Assuntos
Esclerose Amiotrófica Lateral , Doença dos Neurônios Motores , Insuficiência Respiratória , Esclerose Amiotrófica Lateral/complicações , Esclerose Amiotrófica Lateral/diagnóstico , Dispneia/diagnóstico , Dispneia/etiologia , Humanos , Doença dos Neurônios Motores/complicações , Doença dos Neurônios Motores/diagnóstico , Medidas de Resultados Relatados pelo Paciente , Estudos Prospectivos
6.
Artigo em Inglês | MEDLINE | ID: mdl-32003245

RESUMO

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.


Assuntos
Esclerose Amiotrófica Lateral/terapia , Tutoria/métodos , Monitorização Fisiológica/métodos , Telemedicina/métodos , Idoso , Esclerose Amiotrófica Lateral/psicologia , Estudos de Coortes , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Monitorização Fisiológica/psicologia , Profissionais de Enfermagem/psicologia , Satisfação do Paciente , Estudos Prospectivos
7.
Neuropsychol Rehabil ; 29(4): 638-653, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-28441897

RESUMO

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.


Assuntos
Adaptação Psicológica , Disfunção Cognitiva , Depressão , Satisfação no Emprego , Retorno ao Trabalho , Autoeficácia , Acidente Vascular Cerebral , Adaptação Psicológica/fisiologia , Adulto , Idoso , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/fisiopatologia , Disfunção Cognitiva/psicologia , Depressão/etiologia , Depressão/fisiopatologia , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Retorno ao Trabalho/psicologia , Índice de Gravidade de Doença , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/fisiopatologia , Acidente Vascular Cerebral/psicologia
8.
Clin Rehabil ; 32(4): 493-500, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28956478

RESUMO

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.


Assuntos
Lesões Encefálicas/terapia , Cuidadores/psicologia , Relações Familiares/psicologia , Qualidade de Vida , Acidente Vascular Cerebral/terapia , Fatores Etários , Idoso , Ansiedade/etiologia , Ansiedade/fisiopatologia , Lesões Encefálicas/diagnóstico , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Fatores Sexuais , Acidente Vascular Cerebral/diagnóstico , Resultado do Tratamento
9.
Patient Educ Couns ; 99(10): 1632-40, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27103190

RESUMO

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.


Assuntos
Ansiedade/etiologia , Cuidadores/psicologia , Depressão/etiologia , Emoções , Cônjuges/psicologia , Acidente Vascular Cerebral/terapia , Adaptação Psicológica , Idoso , Ansiedade/epidemiologia , Efeitos Psicossociais da Doença , Depressão/epidemiologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Estudos Prospectivos , Qualidade de Vida , Perfil de Impacto da Doença , Apoio Social , Estresse Psicológico/epidemiologia , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/psicologia
10.
J Rehabil Med ; 47(7): 599-604, 2015 Aug 18.
Artigo em Inglês | MEDLINE | ID: mdl-26073710

RESUMO

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.


Assuntos
Depressão/etiologia , Apoio Social , Reabilitação do Acidente Vascular Cerebral , Sobreviventes/psicologia , Estudos de Coortes , Estudos Transversais , Depressão/diagnóstico , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos
11.
Clin Rehabil ; 29(12): 1224-33, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25652441

RESUMO

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.


Assuntos
Ansiedade/etiologia , Cuidadores/psicologia , Depressão/etiologia , Acidente Vascular Cerebral , Afeto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação Pessoal , Psicometria , Inquéritos e Questionários
12.
Patient Educ Couns ; 93(2): 169-76, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23870177

RESUMO

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.


Assuntos
Qualidade de Vida , Apoio Social , Acidente Vascular Cerebral/psicologia , Sobreviventes/psicologia , Humanos
13.
J Stroke Cerebrovasc Dis ; 21(8): 801-7, 2012 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-21640607

RESUMO

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.


Assuntos
Cuidadores/psicologia , Satisfação Pessoal , Qualidade de Vida , Cônjuges/psicologia , Acidente Vascular Cerebral/psicologia , Sobreviventes/psicologia , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Relações Interpessoais , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Autoimagem , Reabilitação do Acidente Vascular Cerebral , Inquéritos e Questionários , Fatores de Tempo
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