Coming home in the context of very early supported discharge after stroke - An interview study of patients' experiences.

OBJECTIVES: To explore patients' experiences of coming home and managing everyday life within the context of very early supported discharge after stroke (VESD). STUDY DESIGN: An explorative qualitative study using semi structured interviews. METHOD: This study was nested within a randomised controlled trial,; Gothenburg Very Early Supported Discharge (GOTVED), comparing a home rehabilitation intervention given by a coordinated team (VESD) with conventional care. Eleven participants with a median age 70.0 years (range 63-95) of which nine scoring 0-4 on the NIHSS indicating no symptoms or minor stroke were interviewed on average 12 days after discharge. Data was analysed using thematic analysis. RESULTS: The diversity of patients' experiences was reflected in the overarching main theme Very Early Supported Discharge after stroke - a multifaceted experience, built upon five themes: "Conditions surrounding the discharge", "Concerns about the condition", "Confronting a new everyday life", "Experiences of the intervention" and the "Role of next of kin". CONCLUSIONS: The respondents were largely satisfied with the very early supported discharge which might be expected, given that it was well planned regarding timing, individualisation and content. The patients need to be aware of the purpose of the VESD intervention. Due to the unpredictability of the stroke and its consequences, interventions need to be flexible. Goal setting is important but must be comprehensible. The role and burden of next of kin should be addressed and negotiated, and the ending of the intervention must be planned, with seamless transition to further rehabilitation and social support including the issue of participation in everyday life.

Gothenburg Very Early Supported Discharge study (GOTVED): a randomised controlled trial investigating anxiety and overall disability in the first year after stroke.

BACKGROUND AND PURPOSE: Early supported discharge (ESD) has been shown to be efficient and safe as part of the stroke care pathway. The best results have been seen with a multidisciplinary team and after mild to moderate stroke. However, how very early supported discharge (VESD) works has not been studied. The aim of this study was to investigate whether VESD for stroke patients in need of ongoing individualized rehabilitation affects the level of anxiety and overall disability for the patient compared with ordinary discharge routine. METHODS: A randomized controlled trial was performed with intention to treat analyses comparing VESD and ordinary discharge from hospital. All patients admitted at the stroke care unit at Sahlgrenska University Hospital of Gothenburg between August 2011 and April 2016 were screened. Inclusion occurred on day 4 using a block randomization of 20 and with a blinded assessor. Assessments were made 5 days post-stroke and 3 and 12 months post-stroke. Patients in the VESD group underwent continued rehabilitation in their homes with a multidisciplinary team from the stroke care unit for a maximum of 1 month. The patients in the control group had support as usual after discharge when needed such as home care service and outpatient rehabilitation. The primary outcome was anxiety as assessed by the Hospital Anxiety and Depression Scale-Anxiety subscale (HADS-A). The secondary outcome was the patients' degree of overall disability, measured by the modified Rankin Scale (mRS). RESULTS: No significant differences were found between the groups regarding anxiety at three or 12 months post-stroke (p = 0.811). The overall disability was significantly lower in the VESD group 3 months post-stroke (p = 0.004), compared to the control group. However, there was no significant difference between the groups 1 year post-stroke. CONCLUSIONS: The VESD does not affects the level of anxiety compared to ordinary rehabilitation. The VESD leads to a faster improvement of overall disability compared to ordinary rehabilitation. We suggest considering coordinated VESD for patients with mild to moderate stroke in addition to ordinary rehabilitation as part of the service from a stroke unit. TRIAL REGISTRATION: Clinical Trials.gov: NCT01622205. Registered 19 June 2012 (retrospectively registered).

Minimal important differences for fatigue patient reported outcome measures-a systematic review.

BACKGROUND: Fatigue is the most frequent symptom reported by patients with chronic illnesses. As a subjective experience, fatigue is commonly assessed with patient-reported outcome measures (PROMs). Currently, there are more than 40 generic and disease-specific PROMs for assessing fatigue in use today. The interpretation of changes in PROM scores may be enhanced by estimates of the so-called minimal important difference (MID). MIDs are not fixed attributes of PROMs but rather vary in relation to estimation method, clinical and demographic characteristics of the study group, etc. The purpose of this paper is to compile published MIDs for fatigue PROMs, spanning diagnostic/patient groups and estimation methods, and to provide information relevant for appraising their appropriateness for use in specific clinical trials and in monitoring fatigue in defined patient groups in routine clinical practice. METHODS: A systematic search of three databases (Scopus, CINAHL and Cochrane) for studies published between January 2000 to April 2015 using fatigue and variations of the term MID, e.g. MCID, MIC, etc. Two authors screened search hits and extracted data independently. Data regarding MIDs, anchors used and study designs were compiled in tables. RESULTS: Included studies (n = 41) reported 60 studies or substudies estimating MID for 28 fatigue scales, subscales or single item measures in a variety of diagnostic groups and study designs. All studies used anchor-based methods, 21/60 measures also included distribution-based methods and 17/60 used triangulation of methods. Both similarities and dissimilarities were seen within the MIDs. CONCLUSIONS: Magnitudes of published MIDs for fatigue PROMs vary considerably. Information about the derivation of fatigue MIDs is needed to evaluate their applicability and suitability for use in clinical practice and research.

Patients' expectations of coming home with Very Early Supported Discharge and home rehabilitation after stroke - an interview study.

BACKGROUND: An Early Supported Discharge (ESD) and rehabilitation from a coordinated team in the home environment is recommended in several high-income countries for patients with mild to moderate symptoms after stroke. Returning home from the hospital takes place very early in Sweden today (12 days post stroke), thus the term Very Early Supported Discharge (VESD) is used in the current study. The aim of this study was to describe patients' expectations of coming home very early after stroke with support and rehabilitations at home. METHOD: This is an interview study nested within a randomized controlled trial; Gothenburg Very Early Supported Discharge (GOTVED), comparing VESD containing a home rehabilitation intervention from a coordinated team to conventional care after stroke. Ten participants (median age 69) with mild to moderate stroke symptoms (NHISS 0 to 8 points) were recruited from the intervention group in GOTVED. Interviews were conducted 0-5 days before discharge and the material was analyzed with qualitative content analysis. RESULTS: Four main categories containing 11 subcategories were found. The VESD team was expected to provide "Support towards independency", by helping the participants to manage and feel safe at home as well as to regain earlier abilities. The very early discharge gave rise to expectations of coming home to "A new and unknown situation", causing worries not to manage at home and to leave the safe environment at the ward. A fear to suffer a recurrent stroke when being out of reach of immediate professional help was also pronounced. In contrast to these feelings of insecurity and fear, "Returning to one's own setting" described the participants longing home, where they would become autonomous and capable people again. They expected this to facilitate recovery and rehabilitation. "A new everyday life" waited for the participants at home and this was expected to be challenging. Different strategies to deal with these challenges were described. CONCLUSIONS: The participants described mixed expectations such as insecurity and fear, and on the other hand, longing to come home. Moreover, they had a high degree of confidence in the expected support of the VESD team. The health professionals at the hospital may build on this trust to reduce the patients' insecurity for coming home. In addition, it may be beneficial to explore the patients' expectations thoroughly in front of discharge, as certain feelings and thoughts could complicate or support the home coming process. Thus, a greater attention on such expectations may facilitate the patient's transition from hospital to home after stroke.

Gothenburg very early supported discharge study (GOTVED) NCT01622205: a block randomized trial with superiority design of very early supported discharge for patients with stroke.

BACKGROUND: Stroke is the disease with the highest costs for hospital care and also after discharge. Early supported discharge (ESD) has shown to be efficient and safe and the best results with well-organised discharge teams and patients with less severe strokes. The aim is to investigate if very early supported discharge (VESD) for stroke patients in need for on-going individualised rehabilitation at home is useful for the patient and cost effective. METHODS/DESIGN: A randomized controlled trial comparing VESD with ordinary discharge. INCLUSION CRITERIA: confirmed stroke, >18 years of age, living within 30 min from the stroke unit, on day 2 0-16 points on the National institute of health stroke scale (NIHSS) and 50-100 points on the Barthel Index (BI), with BI 100 then the patient can be included if the Montreal Cognitive Assessment is < 26. Exclusion criteria are: NIHSS >16, BI < 50, life expectancy < 1 year, inability to speak or to communicate in Swedish. The inclusion occurs on day 4 and in block randomization of 20 and with blinded assessor. PRIMARY OUTCOME: levels of anxiety and depression. SECONDARY OUTCOMES: independence, security, level of function, quality of health, needs of support in activities of daily living and caregiver burden. Power calculation is based on the level of anxiety and with a power of 80%, p-value 0.05 (2 sided test) 44 persons per group are needed. Data is gathered on co-morbidity, re-entry to hospital, mortality and a health economic analysis. Interviews will be accomplished with a strategic sample of 15 patients in the intervention group before discharge, within two weeks after homecoming and 3 months later. Interviews are also planned with 15 relatives in the intervention group 3 months after discharge. DISCUSSION: The ESD studies in the Cochrane review present hospital stays of a length that no longer exist in Sweden. There is not yet, to our knowledge, any study of early supported discharge with present length of hospital stay. Thus it is not clear if home rehabilitation nowadays without risks, is cost effective, or with the same patient usefulness as earlier studies. TRIAL REGISTRATION: ClinicalTrials.gov NCT01622205.

Goal-setting in physiotherapy: exploring a person-centered perspective.

Objective: To analyze definitions and related requirements, processes, and operationalization of person-centered goal-setting in the physiotherapy research literature; to discuss those findings in relation to underlying principles of person-centeredness; and to provide an initial framework for how person-centered goal-setting could be conceptualized and operationalized in physiotherapy. Methods: A literature search was conducted in the databases: CINAHL, PubMed, PEDro, PsycINFO, REHABdata and Scopus. A content analysis was performed on how person-centered goal-setting was described.Results: A total of 21 articles were included in the content analysis. Five categories were identified: 1) Understanding goals that are meaningful to the patients; 2) Setting goals in collaboration; 3) Facing challenges with person-centered goal-setting; 4) Developing skills by experiences and education; and 5) Changing interaction and reflective practice. These categories were abstracted into two higher-ordered interlaced themes: 1) To seek mutual understanding of what is meaningful to the patient; and 2) To refine physiotherapy interaction skills, which we suggest would be useful for further conceptualization.Conclusion: In this analysis, we interpreted person-centered goal-setting in physiotherapy as a process of interaction toward a mutual understanding of what is meaningful to the patient. Future research may explore how to integrate mindful listening, embodied interaction and continuous ethical reflection with different assessments and treatment methods.

Locked-in syndrome in Sweden, an explorative study of persons who underwent rehabilitation: a cohort study.

OBJECTIVE: Locked-in syndrome (LiS) is a rare condition, characterised by a complete paresis except for vertical eye movements and blinking with cognitive functions intact, commonly caused by ischaemia in the ventral pons. Previous studies have indicated that persons with LiS can live on for many years and have a good quality of life (QoL). To our knowledge, LiS has never been studied in Sweden. The aim was to explore LiS in Sweden; describing population characteristics, living situation, mortality/cause of death and health-related QoL/impact on participation. DESIGN: Explorative, nationwide study with two parts (quantitative and qualitative). Persons registered in the national quality register WebRehab during 2007-2014 were eligible. PARTICIPANTS: Ten persons were identified in part 1, four participated in part 2. During part 1, data were collected from WebRehab, medical charts and registers, while questionnaires and interviews were used during part 2. RESULTS: Seven out of 10 were men, median age at onset was 49 years and the cause of LiS was in all cases stroke, 70% of which ischaemic. Three were deceased with a median time of survival of 1.9 years. Seven were still alive, with a median time elapsed since onset of 5.8 years. Three participants experienced good QoL. Information, respect from professionals and more specialised technical devices were three areas containing unfulfilled needs. CONCLUSION: This was the first study conducted in Sweden and the characteristics of this population were like those studied abroad. In this study, the persons with LiS who were interviewed expressed the need for proper care, appropriate technical aids and a supportive environment in order to have QoL. However, there is still much room for improvements.

Intra- and inter-rater reliability of Fugl-Meyer Assessment of Upper Extremity in stroke.

OBJECTIVE: The Fugl-Meyer Assessment of Upper Extremity (FMA-UE) is recommended for evaluation of sensorimotor impairment post stroke, but the item-level reliability of the scale is unknown. The study aims to determine intra- and inter-rater reliability of the FMA-UE at item-, subscale- and total score level in patients with early subacute stroke. DESIGN: Intra/inter-rater reliability. SUBJECTS: Sixty consecutively included patients with stroke (mean age 65.9 years) admitted to Central Military Hospital of Colombia, Bogota. METHODS: Two physiotherapists scored FMA-UE independently on 2 consecutive days within 10 days post stroke. A rank-based statistical method for paired ordinal data was used to assess the level of agreement, systematic and random disagreements. RESULTS: Systematic disagreements either in position or concentration were detected in 4 items of the shoulder section. The item level intra- and inter-rater agreement was high (79100%). The 70% agreement was also reached for the subscales and the total score when 13-point difference was accepted. CONCLUSION: The FMA-UE is reliable both within and between raters in patients with stroke in the early subacute phase. A wider international use of FMA-UE will allow comparison of stroke recovery between regions and countries and thereby potentially improve the quality of care and rehabilitation in persons with stroke worldwide.

Intra-rater and inter-rater reliability at the item level of the Action Research Arm Test for patients with stroke.

OBJECTIVE: To examine the intra- and inter-rater reliability of the Action Research Arm Test (ARAT) at the item level after stroke. DESIGN: An intra-rater and inter-rater reliability study. SUBJECTS: Thirty-five participants (median age 62 years, median time post-stroke 22 months) with impaired upper extremity function after stroke were included in the study. METHODS: Two physiotherapists simultaneously, but independently, assessed the participants' performance in all 19 items of the ARAT twice in 1 day. A rank-based statistical method for paired ordinal data, including calculation of percentage agreement (PA), systematic disagreements (relative position (RP), relative concentration (RC)) and individual variability (relative rank variance (RV)) was used. RESULTS: Satisfactory intra-rater and inter-rater agreement was noted for all items except item 19, which was just below satisfactory level. Within and between raters, small but non-negligible systematic disagreements were found for items 11, 14 and 19 and for items 1, 4, 17 and 19, respectively. There was no disagreement due to random variance within or between raters. CONCLUSION: The ARAT is a highly reliable observational rating scale at the item level after stroke. Awareness regarding the small systematic disagreements demonstrated in some items is, however, recommended when using ARAT.