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Address correspondence to Sebastian Lindblom, MSc, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Alfred Nobels Allé 23, 141 83, Stockholm, Sweden.
To explore the perceived quality of care transitions from hospital to the home with referral to subsequent rehabilitation in the home, and factors associated with low perceived quality, in people with stroke.
Design
Observational study.
Setting and Participants
Eligible were patients with a suspected acute stroke admitted to 1 of 4 inpatient hospital units in the Stockholm region and discharged home with referral to a neurorehabilitation team in primary care.
Methods
Data on perceived quality of care transition was collected with the Care Transition Measure (CTM-15) 1 week after discharge. Additional data were mainly retrieved from medical records. To analyze difference in mean total score of the CTM-15 between participants' characteristics, length of hospital stay, disease-related data, and functioning, the Mann-Whitney U test and independent sample t test were used for dichotomized variables and 1-way analysis of variance and the Tukey post hoc test for variables with more than 2 groups. To analyze differences between participants with low and high perceived quality per item, univariable regression analyses were performed. Thereafter, multivariable regression models were created to explore associations between low perceived quality and the independent variables.
Results
Mean age of the 189 participants was 75 years and 91% had a mild or very mild stroke. The majority perceived most areas of the care transition to be of high quality. Nevertheless, several areas for improvement were identified. People with a more severe stroke perceived the quality of the care transition to be lower in comparison with those with a mild stroke. The association was weak between patient or clinical characteristics and the perceived quality.
Conclusion and Implications
Our findings suggest that preparation for discharge and information and support for self-management postdischarge should be enhanced in the referral-based care transition after stroke. Special attention should be given to people with severe stroke.
GBD 2016 Causes of Death Collaborators Global, regional, and national age-sex specific mortality for 264 causes of death, 1980-2016: A systematic analysis for the Global Burden of Disease Study 2016.
GBD 2015 DALYs and HALE Collaborators Global, regional, and national disability-adjusted life-years (DALYs) for 315 diseases and injuries and healthy life expectancy (HALE), 1990-2015: A systematic analysis for the Global Burden of Disease Study 2015.
Following the sudden onset and the need for acute medical assessment and treatment, hospital care is warranted, and strong evidence supports that such care should be provided in specialized stroke units.
In Sweden, about 90% of the stroke population is treated in stroke units during the acute phase according to the national quality registry (Riksstroke).
The discharge from the stroke unit typically entails a care transition, that is, a transfer of the patient from 1 health care provider to another. Care transitions have been reported to be associated with a potential risk of adverse events,
The heterogeneity of the complex interventions has made it difficult to draw firm conclusions on best-practice, even though it is indicated that patient capacity for self-management should be supported.
Few programs are specifically developed for people with stroke. The only care transition program between health services after stroke for which there is strong evidence of beneficial effects is early supported discharge (ESD).
ESD entails a supported discharge, where an interdisciplinary team plans and coordinates the discharge together with the patient and continues the rehabilitation in the home environment.
Swedish Council on Health Technology Assessment Rehabilitation at home after early supported discharge (ESD) for elderly patients after stroke. SBU report no 234.
Statens beredning för medicinsk utvärdering (SBU),
Stockholm2015
Sentinel Stroke National Audit Program (SSNAP) Post-acute organisational audit. Phase 2: Organisational audit of post-acute stroke service providers, 2015.
Instead, health services containing some features of ESD have been implemented, for example, a hospital discharge with a referral for care or rehabilitation in the home environment. In a systematic review of care and rehabilitation programs in the home environment after hospital discharge, the authors concluded that compared with in-hospital care, care and rehabilitation at home possibly makes little or no difference to patient health outcomes but that patients might be more satisfied with such a service.
However, unlike the evidence base for ESD services, the conclusions were not based on stroke-specific studies. Hence, further research is warranted of hospital discharge services with referral for care or rehabilitation in the home environment for patients with stroke, both regarding patient satisfaction and health outcomes of the care transition and the health service. It is of particular importance to explore how the referral-based care transition is perceived by the patients since, as outlined above, care transitions are critical parts of the care trajectory.
Therefore, the present study aimed to explore the perceived quality of the care transition from hospital to the home with referral to rehabilitation in the home environment, and factors associated with low perceived quality, in people with stroke.
Methods
Study Context
This study was conducted in the Stockholm region in Sweden. Since 2012, a care and rehabilitation program containing a referral to rehabilitation in the home environment after hospital discharge has been offered after stroke. The patients receive usual care and rehabilitation while in the hospital, and subsequent rehabilitation in the home is supplied by a neurorehabilitation team in primary health care. The multiprofessional team at the hospital decides which patients are to be offered the program. The care transition is initiated by an electronic referral from the hospital staff to the receiving neurorehabilitation team. In the referral, the neurorehabilitation team is informed about the patient and of the discharge. The neurorehabilitation team is obliged to initiate contact with the referred patient within 48 hours after hospital discharge. The initial contact is usually made through a telephone call to schedule a visit in dialogue with the patient and/or significant other.
Participants and Procedures
Eligible for inclusion were all patients with a suspected acute stroke admitted to 1 of 4 inpatient hospital units in the Stockholm region discharging patients to neurorehabilitation teams in primary health care, that is, stroke units and geriatric wards at Danderyd Hospital and Karolinska University Hospital in Stockholm, Sweden. The recruitment of participants took place between April 2016 and February 2018. In Figure 1, the patient's care trajectory and study procedures are outlined.
Fig. 1Flowchart of patient care trajectory and study procedures. The patient care trajectory: Patients with stroke were admitted to the emergency room in hospital followed by hospital care at the stroke unit and/or geriatric ward. Patients with stroke who were to be discharged directly home were referred to continued rehabilitation in the home environment. An electronic referral initiated the care transition from hospital to the receiving neurorehabilitation team in primary care. The neurorehabilitation team was obliged to initiate contact with the referred patient within 48 hours after hospital discharge. Data collection: Patients who underwent this patient care trajectory received oral and written information about the study. Written informed consent was obtained from those patients who agreed to participate. In addition, patients were asked to rate their recovery after stroke. Data on patient characteristics were retrieved from medical records at discharge. One week after discharge from the hospital, the Care Transition Measure was collected by letter.
Members of the multiprofessional rehabilitation teams in the participating hospital units were responsible for the recruitment of participants. The recruiting teams included physiotherapists, occupational therapists, speech and language therapists, and social workers. All patients with stroke who were to be discharged directly home were referred to a neurorehabilitation team in primary care. These patients all received oral and written information about the study from a member of the multiprofessional team. From patients who agreed to participate, a written informed consent was obtained and in addition they were asked to rate their recovery after stroke on a subscale of the Stroke Impact Scale 3.0.
The study was approved by the Regional Ethics Committee in Stockholm.
Data Collection
Within 1 week after discharge from the hospital, the participants were sent a letter containing the Swedish version of the Care Transition Measure (CTM-15)
is a unidimensional scale assessing perceived quality in care transitions with a 15-item questionnaire covering 4 areas in relation to a care transition: critical understanding, important preferences, management preparation, and care plan. The affirmative stated items are rated on a 4-point Likert scale ranging from 1 = strongly disagree to 4 = strongly agree.
For each item, an additional response of don't know/not applicable is available. The items are summarized to a total score and computed as the total sum divided by number of answered items, minus 1, divided by 3, and multiplied by 100 in order to get a total score of 0-100 for each respondent. The total score reflects the overall perceived quality of the care transition, with lower scores indicating a poor quality care transition, and higher scores indicating a higher quality care transition. After completing the CTM-15, the participants were asked to return it by mail. Participants who had not returned the questionnaire were reminded and additional CTM-15s were supplied when needed.
Data on patient characteristics were retrieved from medical records and comprised age, sex, educational level (elementary/secondary or university/college), civil status (living alone or cohabiting), work status (working or not working), and information on use of home care services before stroke (yes or no).
Length of hospital stay and disease-related data comprising type of stroke (ischemic stroke, intracerebral hemorrhage, or stroke mimic when the final diagnosis was other than stroke) aphasia, reperfusion therapy (yes or no), stroke severity, and comorbidity were retrieved from medical records. Stroke severity was categorized based on scores on the Barthel Index
during hospital stay. The Barthel Index includes 10 personal care and mobility activities, each scoring 0, 5 or 10 points resulting in a total score of 0 to 100, where a higher score reflects a greater degree of independence. A score of 0 to 49 was classified as moderate or severe, 50 to 94 as moderate, and 95 to 100 as very mild stroke.
Comorbidity was categorized using the Charlson Comorbidity Index, a weighted measure of the burden of chronic disease, into 3 grades of severity: no comorbidity (scores 0), low (scores 1 and 2), and moderate or severe (scores >2).
Data on functioning comprised ambulation and self-rated recovery after stroke. Data on ambulation were retrieved from medical records during hospital stay and categorized as unable to walk or walks with assistance and support, walks with walking aid, or walks without aid or support. Self-rated recovery after stroke while in the hospital was rated by the participants on a subscale of the Stroke Impact Scale.
The subscale entails the rating of own recovery on a scale from 0 to 100, where 0 is not recovered at all and 100 is fully recovered.
Statistical Analyses
Descriptive statistics were used to present the participants' characteristics, length of hospital stay, disease-related data, and functioning. The CTM-15 was analyzed with an aggregated total score and per item, with each item dichotomized into disagree = low perceived quality (scores 1 and 2) and agree = high perceived quality (scores 3 and 4). The response don't know or not applicable was reported separately. In order to analyze the difference in mean total score of the CTM-15 between participants' characteristics, length of hospital stay, disease-related data, and functioning, the Mann-Whitney U test and independent sample t test were used for dichotomized variables and 1-way analysis of variance and the Tukey post hoc test for variables with more than 2 groups. To analyze differences between participants with low and high perceived quality per item, univariable linear (CTM-15 total score) and logistic (dichotomized items) regression analyses were performed. Thereafter, linear and logistic multivariable regression models were created to explore associations between low perceived quality (dependent variable) and the independent variables. In all models, the independent variables were age, sex, educational level, civil status, home care services before stroke, stroke severity, comorbidity, aphasia, reperfusion therapy, length of stay, ambulation, and perceived recovery. Analyses were performed using IBM SPSS Statistics for Windows, version 25 (IBM Corp, Armonk, NY).
Results
The CTM-15 was sent to 206 patients, of which 189 were included as participants in the present study: 2 were deceased, 2 could not be reached, 1 was rehospitalized, and an additional 12 did not return the questionnaire. The characteristics of the participants at inclusion are presented in Table 1. The mean age for women was 76 years and for men 73 years. At stroke onset, 55% of the women were living alone in comparison to 20% of the men. Among the participants, 88% had an ischemic stroke, 6% an intracerebral hemorrhage, and 6% were discharged with a stroke diagnosis that later was classified as stroke mimics. Out of the included participants, 56% were classified as having a very mild stroke, 35% as having a mild stroke, and 9% as having a moderate or severe stroke. Of the participants, 61% were discharged from a stroke unit and 39% from a geriatric ward.
Table 1Participants' Characteristics at Inclusion, Length of Hospital Stay, Disease-Related Data, and Functioning (N = 189)
The mean total score of the CTM-15 was 61.8 points. Participants with a very mild stroke reported higher perceived quality of the care transition (mean 65.7) in comparison to those with a mild stroke (mean 58.3) and a moderate or severe stroke (mean 50.7). The analysis of variance generated a significant variation of the mean among the different levels of stroke severity, F (2, 186) = 5.14, P = .007. The post hoc test showed a significant difference between the group with a very mild stroke in comparison to the group with a moderate or severe stroke (P = .021).
Participants that walked independently reported higher perceived quality of the care transition (mean 66.9) in comparison to participants walking with walking aid (mean 57.4) or not being able to walk or walks with aid and support (mean 54.2). The analysis of variance generated a significant variation of the mean among the different levels of walking ability, F (2, 186) = 6.66, P = .002. The post hoc test showed a significant difference between the group walking independently in comparison to the group walking with walking aid (P = .006) and the group not being able to walk or walked with aid and support (P = .019).
Participants who before their stroke had no home care services reported higher perceived quality of the care transition (mean 63.9) compared to those who had home care service (mean 53.7), P = .007. Participants who received reperfusion therapy reported higher perceived quality of the care transition (mean 68.4) compared to those who did not (mean 60.4), P = .05.
The proportions of participants who perceived low and high quality per item of the CTM-15 are presented in Figure 2. Overall, the majority of the participants perceived the high quality of most items of the CTM-15. However, in 10 of the 15 items, 25% to 57% perceived low quality: clear health goals in agreement with the staff and how these would be reached; understand how to manage own health when leaving the hospital; clearly understand the warning signs and symptoms to look out for to monitor own health condition; a readable and easily understandable written plan describing how all health care needs would be met; a good understanding of own health condition and what could make it better or worse; a good understanding of responsibility in managing own health; confidence in knowing what to do to manage own health; confident to do the things needed to take care of own health; a readable and easily understood written list of the appointments or tests needed to be completed within the next several weeks after discharge; and clearly understand the possible side effects of the medications on discharge from hospital.
Fig. 2Proportions of participants disagreeing, agreeing, don't know or not applicable, and unanswered per item of the Care Transition Measure.
The multivariable logistic regression analyses for the association of the independent variables and low perceived quality per item of the CTM-15 are presented in Table 2. A mild and/or moderate-severe stroke was associated with low perceived quality in relation to the items “having all the information needed to take care of myself on discharge,” “understanding how to manage my health after discharge,” “being confident to actually do the things needed to take care of my health,” and “understanding the possible side-effects of my medication when leaving the hospital.” A longer length of stay was associated with low perceived quality with regard to “having a readable and easily understandable written plan that described how the health care needs would be met” and “having a readable and easily understood written list of the appointments or tests I needed to complete within the next several weeks” when leaving the hospital. Being unable to walk or walk with assistance and support was associated with low perceived quality in relation to the items: “I had a good understanding of my health condition and what makes it better or worse”; “I had a good understanding of the things I was responsible for in managing my health”; and “I was confident that I knew what to do to manage my health” when leaving the hospital. Living alone was associated with low perceived quality with “clearly understanding the purpose for taking each of my medications.” Further, using home care services before stroke onset was associated with low perceived quality regarding “clearly understanding the purpose for taking each of my medications” and “knowing how to take each of my medications, including how much I should take and when.”
Table 2Logistic Regression Models for the Association of the Independent Variables and Low Perceived Quality per Item of the Care Transition Measure
No.
Dependent Variables, Items of CTM
Independent Variables
Variable Categorization
Odds for Disagreeing, OR (95% CI)
P Value
1
Before I left the hospital, the staff and I agreed about clear health goals for me and how these would be reached
No independent variable associated
—
—
—
2
The hospital staff took my preferences into account in deciding what my health care needs would be when I left the hospital
Age
Increased age, y
1.04 (1.00, 1.08)
.044
3
The hospital staff took my preferences into account in deciding where my health care needs would be met when I left the hospital
No independent variable associated
—
—
—
4
When I left the hospital, I had all the information I needed to be able to take care of myself
Stroke severity
Very mild stroke, ≥95
Mild stroke, 50-94
3.08 (1.42, 6.67)
.004
Moderate or severe stroke, 0-49
2.93 (0.78, 11.04)
.113
5
When I left the hospital, I clearly understood how to manage my health
Stroke severity
Very mild stroke ≥95
Mild stroke 50-94
3.26 (1.57, 6.75)
.001
Moderate or severe stroke 0-49
4.82 (1.38, 16.77)
.013
6
When I left the hospital, I clearly understood the warning signs and symptoms I should watch for to monitor my health condition
No independent variable associated
—
—
—
7
When I left the hospital, I had a readable and easily understood written plan that described how all of my health care needs were going to be met
Total length of stay
Days
1.50 (1.12, 2.01)
.006
8
When I left the hospital, I had a good understanding of my health condition and what makes it better or worse
Ability to walk
Walks independently
Walks with walking aid
1.55 (0.73, 3.30)
.251
Unable/assistance, support
2.83 (1.21, 6.65)
.017
9
When I left the hospital, I had a good understanding of the things I was responsible for in managing my health
Ability to walk
Walks independently
Walks with walking aid
2.53 (1.04, 6.16)
.041
Unable/assistance, support
4.79 (1.82, 12.62)
.002
Self-rated stroke recovery
0-100
1.02 (1.00, 1.03)
.051
10
When I left the hospital, I was confident that I knew what to do to manage my health
Ability to walk
Walks independently
Walks with walking aid
2.74 (1.21, 6.22)
.016
Unable/assistance, support
4.81 (1.97, 11.79)
.001
11
When I left the hospital, I was confident I could actually do the things I needed to do to take care of my health
Stroke severity
Very mild stroke ≥95
Mild stroke 50-94
2.79 (1.39, 5.62)
.004
Moderate or severe stroke 0-49
6.20 (1.66, 23.14)
.007
12
When I left the hospital, I had a readable and easily understood written list of the appointments or tests I needed to complete within the next several weeks
Total length of stay
Days
1.34 (1.02, 1.77)
.037
13
When I left the hospital, I clearly understood the purpose for taking each of my medications
Living alone or cohabiting
Cohabiting
Living alone
6.25 (1.70, 25.00)
.006
Home care services before stroke
No
Yes
4.00 (1.25, 12.50)
.019
14
When I left the hospital, I clearly understood how to take each of my medications, including how much I should take and when
Home care services before stroke
No
Yes
5.88 (2.04, 16.67)
.001
15
When I left the hospital, I clearly understood the possible side-effects of each of my medications
In Table 3, the final multiple linear regression model of the 12 independent variables and the dependent variable total score of the CTM-15 is depicted. The model showed that walking with walking aid and not being able to walk or walks with assistance and support were associated with a lower summarized perceived quality (total score of the CTM-15). However, the final model only explained 6.8% of the variance of the total CTM-15 score (adjusted R2 = 0.068).
Table 3Final Multiple Linear Regression Model of Association Between Independent Variables and the Total Score of the CTM as the Dependent Variable
CTM Total Score 0-100
Independent Variable
Unstandardized Coefficients, β (95% CI)
P Value
Standardized Β
Constant
53.455
Home help services before stroke onset
7.06 (−0.57, 14.69)
.07
0.135
Unable to walk or walks with assistance and support
To our knowledge, this is the first study to evaluate the perceived quality of care transitions with the CTM-15 between inpatient hospital care and referral to subsequent rehabilitation in the home environment in people with stroke. The majority of the participants perceived most areas of the care transition to be of high quality. Nevertheless, several areas for improvement were identified. People with a more severe stroke perceived the quality of the care transition to be lower in comparison with those with a mild stroke. Further, our findings indicate that the association was weak between patient or clinical characteristics and the perceived quality.
In relation to previously reported findings of the total mean score of the CTM-15, the quality of the care transition was perceived as lower in our population of people with stroke in comparison to other populations, such as patients from medical and surgical wards, other neurological diseases, congestive heart failure, diabetes, and oncology patients.
Psychometric properties of transitional care instruments and their relationships with health literacy: Brief PREPARED and Care Transitions Measure. International journal for quality in health care.
One plausible explanation could be the sudden onset of stroke and the short length of hospital stay with limited possibilities to identify and address all the needs of the patient. Further, because stroke is a complex disease that often affects persons who already have other diseases, personalized and coordinated transitions are of particular importance.
Our results indicate that people with moderate-severe stroke perceived the quality of the care transition as lower in comparison to people with a mild stroke. These findings are in line with previous studies on satisfaction with care reporting that having a more severe stroke is a strong predictor for being dissatisfied with acute stroke care.
Hence, the referral-based care transition of the present study might not provide a sufficient and individualized support to meet the often comprehensive and complex needs of people with severe stroke. Our findings suggest that there is room for quality improvement in referral-based care transitions, in particular for people with moderate-severe stroke.
Exploring the perceived quality per item revealed that a majority of the participants were satisfied. However, the proportions of participants who perceived low quality with individual items highlighted some critical areas for improvement of the discharge process. One area of importance is the support for self-management skills, such as managing and monitoring the health condition after discharge. Further, creating a care plan, describing the health care needs, and how they are going to be met is imperative. These 2 areas are recurrent in guidelines and literature to improve care transitions.
As many as 57% did not clearly understand the possible side effects of each of their medications when leaving the hospital. This finding should be taken seriously because insufficient information about side effects of medication is associated with poor medication compliance and the risk of an adverse event or failure with the medical secondary prevention,
Walking ability was the only independent variable associated with the total score of the CTM-15. However, the final linear regression model had a low explanation rate of the variance on the total score of the CTM-15. Hence, patient or clinical characteristics do not appear to explain the perceived quality of referral-based care transitions. Instead the perceived quality must be associated with other factors, such as contextual factors of a care transition, for example, discharge routines, quality of communication and information, and coordination of care, as have previously been reported.
In our previous study including the perspectives of all stakeholders involved in the referral-based care transition, we found no standardized protocols for patient education or joint care planning while in the hospital.
Perceptive dialogue for linking stakeholders and units during care transitions—A qualitative study of people with stroke, significant others and healthcare professionals in Sweden.
A strength of the present study is the exploration of the CTM-15 both at an aggregated total score and per item. This allows for more detailed information about potential areas for improvement. However, the findings of the present study do not provide any information about health outcomes associated with referral-based transitions or how the perceived quality of the care transition might affect the recovery of people with stroke. The participants' functioning, their use of health services and caregiver-related outcomes, and how these factors are associated with the perceived quality of the care transition remain to be explored.
The study was conducted at 2 different hospitals in the Stockholm region, which might affect the external validity of the study and impact on the generalizability of the results to other settings. However, the intention with the use of the 2 hospitals, within 2 different socioeconomic catchment areas, and the use of both stroke units and geriatric wards was to generate a representative sample of the stroke population targeted in the program. Nevertheless, we acknowledge that the proportion of patients with moderate-severe stroke was small. Because they perceived the quality of their care transition to be lower in comparison with those with a mild stroke, further investigation of their particular needs is warranted. One further limitation might be that not all eligible patients were asked to participate in the study by the members of the rehabilitation teams in the participating hospitals and the lack of a comparison group.
Conclusions and Implications
Our findings suggest that preparation for discharge and information and support for self-management postdischarge should be enhanced in the referral-based care transition of this study. Special attention should be given to people with severe stroke. Nevertheless, there were few clinical characteristics associated with the total score of the CTM-15, indicating that contextual factors such as discharge routines, creation of individual care plans, and supporting self-management skills should be addressed in order to improve the quality of referral-based care transitions. A transitional care program should address a holistic view of the patient's strengths and challenges as well as be individualized to also include the person's own stated needs, that is, be person-centered.
Acknowledgments
The authors thank the people with stroke who participated in the study. We acknowledge help from the staff at the participating hospitals with the recruitment of people with stroke.
References
GBD 2016 Causes of Death Collaborators
Global, regional, and national age-sex specific mortality for 264 causes of death, 1980-2016: A systematic analysis for the Global Burden of Disease Study 2016.
Global, regional, and national disability-adjusted life-years (DALYs) for 315 diseases and injuries and healthy life expectancy (HALE), 1990-2015: A systematic analysis for the Global Burden of Disease Study 2015.
Psychometric properties of transitional care instruments and their relationships with health literacy: Brief PREPARED and Care Transitions Measure. International journal for quality in health care.
Perceptive dialogue for linking stakeholders and units during care transitions—A qualitative study of people with stroke, significant others and healthcare professionals in Sweden.
This work was supported by the Swedish Stroke Association; Neuro Sweden; Section of Neurology, Swedish Association of Physiotherapists and the Doctoral School in Health Care Sciences, Karolinska Institutet.
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