Advance Care Planning in Huntington Disease: The Elderly Care Physician's Perspective.

OBJECTIVE: Huntington disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). Elderly care physicians (ECPs) can play an important role in ACP in HD patients. However, little is known about their experiences in this role. The aim of this study is to gain insight into how ECPs practice ACP with HD patients. DESIGN: A qualitative interview study. SETTING AND PARTICIPANTS: Nine ECPs working in HD-specialized nursing homes in the Netherlands. METHODS: We conducted semistructured interviews with ECPs between June 2018 and July 2020. RESULTS: Two phases could be identified in the process of ACP. In the first phase, when the feared future seems to be far away, the ECP asks about the patient's wishes for the future in an accommodating manner. In the second phase, when the feared future is closer, future medical treatment and care becomes less hypothetical. Agreement has to be reached on upcoming treatment decisions. In this phase, the ECP takes a more guiding role, and consequently encounters more difficulties, such as maintaining a positive patient/family-physician relationship while dealing with disagreements with patient or family. Most participants shared their experiences with euthanasia when asked about ACP. When making a comparison of ACP between HD patients and patients with other neurodegenerative disorders in nursing homes, the ECPs emphasized the similarities. CONCLUSIONS AND IMPLICATIONS: ACP in HD can be classified into 2 phases, which differ in ECPs' approach and the complexity experienced by the ECP. Awareness of this finding may help to further develop training and education in ACP, including dealing with euthanasia, to make ECPs feel better equipped in practicing ACP in HD.

Nursing home residents with Huntington's disease: Heterogeneity in characteristics and functioning.

BACKGROUND: In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group. OBJECTIVE: Describing patient and disease characteristics, their functioning, and gender differences. METHODS: A cross-sectional descriptive design was used to collect data of 173 patients living in eight Dutch HD-specialized NHs. Data were collected on characteristics and functioning. We tested for gender differences. RESULTS: Mean age was 58.3 years and 49.7% were men. Activities of daily living and cognition varied from 46 to 49% mildly impaired to 22-23% severely impaired. Communication was severely impaired in 24%. Social functioning was low in 31% and high in 34%. A majority of patients used psychotropic medications (80.3%) and showed neuropsychiatric signs (74%). Women were on average more dependent in ADL (severely impaired 33.3% vs 12.8%), more often depressed (26.4% vs 11.6%), and prescribed antidepressant medications more often (64.4% vs 48.8%) than men. CONCLUSIONS: The population of HD patients in NHs is heterogeneous in terms of patient and disease characteristics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment.

The Disability Paradox? Trajectories of Well-Being in Older Adults With Functional Decline.

Objectives: The 'disability paradox' (DP) suggests that most older adults maintain subjective well-being (SWB) despite functional decline. However, this may depend the SWB component: positive affect (PA), negative/depressed affect (NA/DA) or life satisfaction (LS). We assessed trajectories of these components in older adults with substantial functional decline. Methods: Data originated from the Longitudinal Aging Study Amsterdam (N = 2545) observed during 1992-2008. Using latent class growth analysis, we distinguished a group with substantial functional decline and examined their SWB trajectories and individual characteristics. Results: The DP occurred more frequently for DA (Men:73%, Women:77%) and LS (Men:14%, Women:83%) than for PA (Men:26%, Women:17%). Higher perceived control (mastery) emerged as the most consistent factor associated with higher odds of the DP. Discussion: We provide a nuanced view of the DP, shifting the question from whether it exists to for which dimension of SWB and for whom it is more or less apparent.

Patient perspectives on advance euthanasia directives in Huntington's disease. A qualitative interview study.

BACKGROUND: Huntington's disease (HD) has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive (AED). Little is known about the perspectives of HD patients on their AED. AIM: To gain insight into patients' views on and attitudes towards their AED, and changes over time. METHODS: A longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients (5 outpatient clinic, 3 day care, 1 assisted living facility) who either had an AED or were thinking about drawing it up participated in this study. RESULTS: We identified two themes that characterize patients' perspectives on their AEDs: (1) general character of the AED; (2) uncertainty around their AED. Ad (1) The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad (2) Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED. CONCLUSION: HD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care.

Family caregivers' perspectives on their interaction and relationship with people living with dementia in a nursing home: a qualitative study.

BACKGROUND: Social interactions are important for people living with dementia in a nursing home. However, not much is known about interactions and relationships between residents and family caregivers and related experiences of family caregivers. We aim to advance the knowledge on how family caregivers interact with people living with dementia in a nursing home and how they maintain or redesign a meaningful connection. METHODS: Qualitative research using interviews with family caregivers (n = 31) to explore perspectives on their interaction and relationship with the person living with dementia. Interviews were held during the reopening of nursing homes after the first COVID-19 lockdown in the Netherlands. In this situation, family caregivers became more aware of their interaction and relationship with the resident, which provided a unique opportunity to reflect on this. The interviews explored the interaction and relationship in a broad sense, not specifically for the COVID-19 situation. Thematic analysis was performed to analyze the data. RESULTS: We were able to identify three key themes reflecting the experiences of family caregivers: (1) changes in the interaction and relationship, (2) strategies to promote connection, and (3) appreciation of the interaction and relationship. From the viewpoint of family caregivers, the interaction and relationship are important for both the resident living with dementia and for themselves, and family caregivers have different strategies for establishing a meaningful connection. Nevertheless, some appear to experience difficulties with constructing such a connection with the resident. CONCLUSIONS: Our results provide a basis for supporting family caregivers in perceiving and establishing mutuality and reciprocity so that they can experience togetherness.

Association Between Subjective Remaining Life Expectancy and Advance Care Planning in Older Adults: A Cross-Sectional Study.

CONTEXT: Advance care planning (ACP) becomes more relevant with deteriorating health or increasing age. People might be more inclined to engage in ACP as they feel that they are approaching end of life. The perception of approaching end of life could be quantified as subjective remaining life expectancy (SRLE). OBJECTIVES: First, to describe the prevalence of ACP with health care providers or written directives ("formal engagement in ACP") and ACP with loved-ones ("informal engagement in ACP") among older persons in the general population in The Netherlands. Second, to assess the association between SRLE and engagement in ACP. METHODS: Cross-sectional study using data from the Longitudinal Aging Study Amsterdam (LASA) measurement wave of 2015-2016. Participants (n = 1585) were aged ≥ 57 years. RESULTS: Median age was 69.4 years (IQR: 64.1-76.7), and median SRLE 25.9 years (17.7-36.0). Formal engagement in ACP was present in 32.6%, informal without formal engagement in 45.8%, and 21.6% was not engaged in ACP. For respondents with SRLE < 25 years, there was a nonstatistically significant association between SRLE and engagement in ACP (aOR: 0.97; 95% CI: 0.93-1.01; P= .088), and a statistically significant, small association with formal vs. informal engagement in ACP (aOR: 0.96; 0.93-0.99; P= .009). For respondents with SRLE ≥ 25 years there was no association between SRLE and engagement in ACP. CONCLUSION: The perception of approaching end of life is associated with higher prevalence of formal engagement in ACP, but only for those with SRLE < 25 years. For clinicians, asking patients after their SRLE might serve as a starting point to explore readiness for ACP.

Gaining insight into the views of outpatients with Huntington's disease regarding their future and the way they deal with their poor prognosis: a qualitative study.

BACKGROUND: Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis. AIM: To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease. METHODS: A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified. RESULTS: Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge 'at a distance', with the motivation of keeping daily life as manageable as possible. CONCLUSIONS: Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.

Between Choice, Necessity, and Comfort: Deciding on Tube Feeding in the Acute Phase After a Severe Stroke.

This is an ethnographic study of decision-making concerning tube feeding in the acute phase after a severe stroke. It is based on 6 months of ethnographic research in three stroke units in the Netherlands, where the decision-making on life-sustaining treatment was studied in 16 cases of severe stroke patients. Data were collected through participant observation and interviews. For this article, the analysis was narrowed down to the decision whether or not the patient should receive tube feeding. The data on tube feeding were assembled and coded according to different modes of dealing with this decision in clinical practice, which we refer to as "repertoires." We discerned three different repertoires: choice, necessity, and comfort. Each repertoire structures clinical practice differently: It implies distinctive ethical imperatives, central concerns, sources of information, and temporalities. We hope our findings can improve decision-making by uncovering its underlying logics in clinical practice.

Underlying goals of advance care planning (ACP): a qualitative analysis of the literature.

BACKGROUND: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP. METHODS: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached. RESULTS: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment. CONCLUSIONS: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.

Pressure in dealing with requests for euthanasia or assisted suicide. Experiences of general practitioners.

The majority of Dutch physicians feel pressure when dealing with a request for euthanasia or physician-assisted suicide (EAS). This study aimed to explore the content of this pressure as experienced by general practitioners (GP). We conducted semistructured in-depth interviews with 15 Dutch GPs, focusing on actual cases. The interviews were transcribed and analysed with use of the framework method. Six categories of pressure GPs experienced in dealing with EAS requests were revealed: (1) emotional blackmail, (2) control and direction by others, (3) doubts about fulfilling the criteria, (4) counterpressure by patient's relatives, (5) time pressure around referred patients and (6) organisational pressure. We conclude that the pressure can be attributable to the patient-physician relationship and/or the relationship between the physician and the patient's relative(s), the inherent complexity of the decision itself and the circumstances under which the decision has to be made. To prevent physicians to cross their personal boundaries in dealing with EAS request all these different sources of pressure will have to be taken into account.

Involuntary care - capturing the experience of people with dementia in nursing homes. A concept mapping study.

OBJECTIVE: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. METHOD: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . RESULTS: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. CONCLUSION(S): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.

Is an unhealthy work environment in nursing home care for people with dementia associated with the prescription of psychotropic drugs and physical restraints?

BACKGROUND: Research showed that long-term care facilities differ widely in the use of psychotropic drugs and physical restraints. The aim of this study is to investigate whether characteristics of an unhealthy work environment in facilities for people with dementia are associated with more prescription of psychotropic drugs and physical restraints. METHODS: Data were derived from the first wave (2008-2009) of a national monitoring study in the Netherlands. This paper used data on prescription of psychotropic drugs and physical restraints from 111 long-term care facilities, residing 4,796 residents. Survey data of a sample of 996 staff and 1,138 residents were considered. The number of residents with prescribed benzodiazepines and anti-psychotic drugs, and physical restraints were registered. Work environment was assessed using the Leiden Quality of Work Questionnaire (LQWQ). RESULTS: Logistic regression analyses showed that more supervisor support was associated with less prescription of benzodiazepines. Coworker support was found to be related to less prescription of deep chairs. Job demands and decision authority were not found to be predictors of psychotropic drugs and physical restraints. CONCLUSIONS: Staff's job characteristics were scarcely related to the prescription of psychotropic drugs and physical restraints. This finding indicates that in facilities with an unhealthy work environment for nursing staff, one is not more likely to prescribe drugs or restraints. Further longitudinal research is needed with special attention for multidisciplinary decision making - especially role of physician, staff's knowledge, philosophy of care and institutional policy to gain further insight into factors influencing the use of psychotropic drugs and restraints.

[Feasibility of a geriatric multidisciplinary outpatient rehabilitation program-lessons learned]. / Haalbaarheid van een poliklinisch geriatrisch Revalidatieprogramma - lessen uit een pilotproject.

OBJECTIVE: To describe the feasibility of a geriatric multidisciplinary outpatient rehabilitation program, developed in Vivium Naarderheem. DESIGN: A prospective pilot study using a pretest-posttest design with measurements of the level of (social) participation, health related quality of life, and caregiver strain at the start (T0) and the end (T1) of the program. Feasibility was studied by structured interviews with participants, professionals and management. RESULTS: We included 18 patients, fifteen of which were admitted after stroke. The program was highly appreciated by patients. Management and professionals thought that factors of influence on the program were transportation of patients, adequate planning and deployment of staff, and adequate financing. The program was regarded feasible. Although some patients reported a higher level of participation, the only statistically significant finding was a deterioration in self-perceived health. CONCLUSION: In this study most of the patients participated after stroke. The geriatric multidisciplinary outpatient rehabilitation program, following inpatient geriatric rehabilitation, was highly appreciated by patients, and considered feasible by management and professionals.

[Home after a stroke; 'that's when it really begins'. A qualitative study into the needs for aftercare of stroke patients after being discharged home]. / Thuis na een CVA: 'Dan begint het pas'. Een kwalitatief onderzoek naar de behoefte aan nazorg van CVA-patiënten na terugkeer naar huis.

AIM: To explore stroke patients needs of care after discharge from hospital or rehabilitation facility. METHOD: Semi-structured interviews with twenty stroke patients and their partners in the region Midden-Kennemerland in the Netherlands. RESULTS: 'That's when it really begins'; at home it becomes clear what the real consequences of the stroke are on daily life. After returning home patients would have liked to (1) have had more information/support and they have a need for support for a long time after their stroke; (2) have had the possibility to get support later on (after having said 'no' in the first place). On the other hand there are (3) patients who are inclined to search for solutions by themselves. CONCLUSION: Only after returning home stroke patients and their partners can really assess what their need for care is. Therefore the need for care of stroke patients should be assessed after a period of time after the patients return home. The care should be available for a long time after the stroke. Because patients don't realize that they can get help for the neuropsychological consequences, it is important that the initiative to organize the care lies in the hands of the caregivers.

Pain among institutionalized stroke patients and its relation to emotional distress and social engagement.

OBJECTIVE: Pain is a frequent long-term consequence of stroke, but its relation to emotional and social well-being is poorly studied in stroke populations. We aimed to identify the prevalence of substantial pain among institutionalized stroke patients and to explore its relation to emotional distress (ED) and low social engagement (SE). METHODS: In a cross-sectional design, we collected data of 274 chronic stroke patients in Dutch nursing homes. Observation lists were filled out in structured interviews with qualified nurse assistants who knew the residents well. Pain and SE were measured with the Resident Assessment Instrument for Long-term Care Facilities, and ED was measured with the Neuropsychiatric Inventory Questionnaire (NPIQ). RESULTS: Substantial pain was present in 28% of the residents, mostly located in the affected body side (68%). Multilevel regression analyses revealed that this pain was independently related to a 60% increase in NPIQ score (ß 3.18 [1.84-4.53]) and to clinically relevant symptoms of delusions (odds ratio [OR] 8.45 [1.82-39.05]), agitation/aggression (OR 3.82 [1.76-8.29]), depression (OR 3.49 [1.75-6.98]), and anxiety (OR 2.32 [1.08-4.97]). Substantial pain was associated with low SE when adjusted for clinical covariates (OR 4.25 [1.72-10.53]), but only in residents with no/mild or severe cognitive impairment. This relation disappeared when additionally corrected for NPIQ score (OR 1.95 [0.71-5.39]). CONCLUSIONS: Pain is a serious and multidimensional problem among institutionalized stroke patients. It is related to increased ED, which in turn can be a pathway to low SE as an indicator of social vulnerability. Future research should reveal how pain management in nursing homes can be tailored to the needs of this patient group.

Apathy among institutionalized stroke patients: prevalence and clinical correlates.

OBJECTIVES: Apathy is a frequent neuropsychiatric consequence of stroke. In the under-researched population of institutionalized stroke patients, we aimed to explore the prevalence of apathy, its clinical correlates, and the relation to the amount of stimulating activities in the nursing home (NH). DESIGN: A cross-sectional, observational study. SETTING: Dutch NHs. PARTICIPANTS: 274 chronic stroke patients. MEASUREMENTS: Data were collected through observation lists that were filled out in structured interviews with qualified nurse assistants who knew the residents well. The lists comprised the NH-version of the Apathy Evaluation Scale (AES10), the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. Attending physicians and therapists provided additional information. RESULTS: Apathy (AES10 score ≥30) was present in 28% of residents. Multilevel regression analyses revealed that this apathy was independently related to (moderate, severe) cognitive impairment (odds ratio [OR] 11.30 [95% confidence interval (CI): 4.96-25.74], OR 5.54 [95% CI: 2.48-12.40]), very severe ADL-dependency (OR 12.10 [95% CI: 1.35-108.66]), and being >12 hours per day in bed (OR 2.10 [95% CI: 1.07-4.13]). It was not related to depressive mood symptoms (OR 1.75 [95% CI: 0.91-3.37]). Only in residents aged less than 80 years were a higher amount of activities independently related to a lower AES10 score (-0.70 [95% CI: -1.18 to -0.20] points per four extra activities in a 4-week period). CONCLUSIONS: Apathy is prevalent in largely one-quarter of institutionalized stroke patients, and that is most strongly related to cognitive impairment in this explorative study. We discuss the need for research on the relation with distinct dimensions of depression and fatigue as partly overlapping constructs, and on (individualized) stimulating activities as a possible intervention method.

Staff's person-centredness in dementia care in relation to job characteristics and job-related well-being: a cross-sectional survey in nursing homes.

AIM: To explore the role of nursing staff's person-centredness caring for people with dementia in relation to their work environment and job-related well-being. BACKGROUND: Given the development towards person-centred care and labour force issues, research has recently focused on the effect of person-centredness on nursing staff's well-being. Findings from occupational stress research suggest that employees' personal characteristics, such as person-centredness, can moderate the impact particular job characteristics have on their job-related well-being. DESIGN: Cross-sectional survey. METHODS: A national survey was conducted among healthcare staff (n = 1147) in 136 living arrangements for people with dementia in the Netherlands (2008-2009). Hierarchical regression analyses were used. RESULTS: Person-centredness moderates the relationship between coworker support and three outcomes of job-related well-being and between supervisor support and two of these outcomes. For highly person-centred nursing staff, coworker support was found to have a weaker impact and supervisor support to have a stronger impact on their job-related well-being. In addition, direct effects showed that person-centredness was weakly associated with more job satisfaction, more emotional exhaustion and more strongly with more personal accomplishment. CONCLUSION: Nursing staff's person-centredness does play a modest role in relation to job characteristics and job-related well-being. Findings indicate that person-centredness is not only beneficial to residents with dementia as found earlier, but also for nursing staff themselves; specifically, in case nursing staff members feel supported by their supervisor. Since a more person-centred workforce feels more competent, further implementation of person-centred care might have a positive impact on the attractiveness of the profession.

The experiences of people with dementia and intellectual disabilities with surveillance technologies in residential care.

BACKGROUND: Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy. OBJECTIVE: To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy. SETTING: Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual disabilities. METHODS: Ethnographic field study. ETHICAL CONSIDERATIONS: The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients' assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee. FINDINGS: Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being "watched." CONCLUSION: Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices' presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach.

What predicts a poor outcome in older stroke survivors? A systematic review of the literature.

PURPOSE: To identify factors in the early post-stroke period that have a predictive value for a poor outcome, defined as institutionalization or severe disability. METHODS: MEDLINE, PSYCINFO, EMBASE and CINAHL were systematically searched for observational cohort studies in which adult and/or elderly stroke patients were assessed ≤ 1 month post-stroke and poor outcome was determined after a follow-up of ≥ 3 months. RESULTS: Thirty three articles were selected from 4063 records, describing 27 independent cohort studies. There are rather consistent findings that greater age, a more severe stroke (measured through a clinical evaluation scale), the presence of urinary incontinence (with impaired awareness) and a larger stroke volume (measured through brain imaging techniques) predict poor stroke outcome. In contrast to clinical expectations, the prognostic value of ADL-dependency and impaired cognition remains unclear, and factors in the domains of emotional and communicative functioning rarely feature. Studies using a selected group of stroke patients tended to identify different predictors. CONCLUSIONS: The current evidence is insufficient for the development of a clinical prediction tool that is better than physicians' informal predictions. Future research should focus on the selection of optimal screening instruments in multiple domains of functioning, including the timing of assessment. We suggest developing prediction tools stratified by more homogeneous, clinically distinguished stroke subtypes. IMPLICATIONS FOR REHABILITATION: A reliable prognosis soon after a stroke is highly relevant to patients who ultimately have a poor outcome, because it enables early planning of care tailored to their needs. In view of the development of a clinical prediction tool that is better than physicians' informal predictions, future research should focus on optimal screening instruments in multiple domains of functioning, including emotional and communicative functioning. Clinical prediction tools stratified by more homogeneous, clinically distinguished stroke subtypes, could enable more accurate prognosis in individual stroke patients.

Institutionalized stroke patients: status of functioning of an under researched population.

OBJECTIVES: In view of the development of an integrated care and treatment program for institutionalized stroke patients tailored to their needs, we aimed to explore their status of functioning in the physical, cognitive, emotional, communicative and social domains. In addition, we explored the relation between status of functioning and stroke characteristics. DESIGN: A cross-sectional, observational study. SETTING: Dutch nursing homes (NHs). PARTICIPANTS: Residents with stroke as main diagnosis for NH-admission, who experienced a stroke ≥3 months ago and stayed ≥1 month in a long term care ward. MEASUREMENTS: Attending physicians provided information about stroke subtype, stroke location and time post-stroke. Status of functioning was measured through an observation list comprising the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. The list was filled out in a structured interview with a qualified nurse assistant who knew the resident well. RESULTS: We included 274 residents (mean age 76.6, 58.4% female). The stroke that caused NH-dependency was in 81.3% ischemic, and in 49.8% right-sided. Median time post-stroke was 47 months; 90.9% of the residents were severely dependent in basic activities of daily living and 58% were in pain. Nearly half of the residents showed moderate (24.4%) or severe (23%) cognitive impairment. Irritability (52.9%), depressive symptoms (52.6%) and apathy (34.3%) occurred as the most frequent neuropsychiatric symptoms; 27.7% had a poor ability to express themselves and 30.3% had a low social engagement. We found more severe cognitive impairment, agitation/aggression and poor expression in left-sided strokes, more nighttime behavioral disturbances and delusions in right-sided strokes, and lower social engagement in residents with the largest time-interval post-stroke. CONCLUSION: This study among institutionalized stroke patients in Dutch NHs revealed very high prevalence of impairments on all domains of functioning, above the well-known severe disabilities in basic activities of daily living. The monitoring and management of both pain and neuropsychiatric symptoms should be key elements in an integrated care and treatment program.