Unmet Needs of US Acute Stroke Survivors Enrolled in a Transitional Care Intervention Trial

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Unmet Needs of US Acute Stroke Survivors Enrolled in a Transitional Care Intervention Trial Anne K. Hughes, PhD, MSW,* Amanda T. Woodward, PhD,* Michele C. Fritz, MS,† Sarah. J. Swierenga, PhD,‡ Paul P. Freddolino, PhD,* and Mathew J. Reeves, PhD, FAHA†

Background: Needs of patients that go unmet after a stroke can compromise the speed and extent of recovery. While unmet needs in long-term survivors has been studied, less is known about the unmet needs of acute stroke survivors. We examine unmet needs in the immediate postdischarge period among 160 participants in the (blinded for review) a transitional care intervention conducted in (blinded for review [1 US state]) during 2016 and 2017. Methods: Bivariate and multivariate analyses using Poisson models were used to examine the relationship between total number of unmet needs and demographics, stroke type and severity, stroke effects, and stroke risk factors. Results: The mean number of unmet needs was 4.55; number of unmet needs ranged from 2 to9; all participants had some unmet need. The most common unmet needs were stroke education (73.8%), financial (33.8%), and healthrelated (29.4%). In the final multivariate model income and education were inversely associated with number of unmet needs. As total number of stroke effects increased, so did number of unmet needs. Demographic variables (age, gender, and race), stroke risk factors, stroke type, and stroke severity were not statistically significantly associated with the number of unmet needs. Conclusions: These results identify that in the acute post discharge period stroke survivors have many unmet needs that range from physical to psychosocial. Targeting interventions to those with the potential for greater numbers of unmet needs might be a salient clinical approach to improving stroke recovery and rehabilitation. Key Words: Acute recovery—psychosocial—financial—stroke education—care transitions © 2019 Elsevier Inc. All rights reserved.

Introduction From the *Michigan State University, School of Social Work, East Lansing, MI; †Michigan State University, Department of Epidemiology and Biostatistics, East Lansing, MI; and ‡Michigan State University, University Outreach and Engagement, East Lansing, MI. Received July 16, 2019; revision received September 27, 2019; accepted October 5, 2019. Funding: Research reported in this article was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (IHS1310-07420-01). The views in this article are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee. All authors contributed in an important manner to the study design, data collection, analysis, and writing of the manuscript. Address correspondence to Anne K. Hughes, PhD, MSW, School of Social Work, Michigan State University, 655 Auditorium Rd., Baker Hall, 240, East Lansing, MI. E-mail: [email protected]. 1052-3057/$ - see front matter © 2019 Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.jstrokecerebrovasdis.2019.104462

Stroke is a major health concern in the United States, affecting over 795,000 people each year, with 25% occurring in people who have previously experienced a stroke.1 In addition to the direct monetary costs of stroke ($34 billion/year), disability-associated costs are also extremely high, as stroke is a leading cause of major disability in the United States.1 Psychosocial factors like depression, isolation, and stress can impact a patient’s risk of, and recovery from, stroke.2,3 It is important to understand the psychosocial concerns that confront patients after stroke so that providers can maximize the recovery trajectory and minimize any nonphysical barriers to recovery. Unmet needs in stroke have been defined as: (a) resources or assistance that would help a stroke survivor to overcome some of the effects of their stroke and resulting difficulties4 and (b) expressed needs that are not satisfied

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by current service provision.5 When studied empirically, poststroke unmet needs have typically been examined in the long term, ranging from 1 to 11 years poststroke, in Europe and Australia, and often do not focus on broader psychosocial issues.6 Prior studies have identified that long term survivors of stroke have a variety of unmet needs.4,6,7-9 Higher levels of unmet need have been associated with greater levels of disability,4,7 lower levels of community integration,9 poorer quality of life,8 and nonWhite ethnicity.4 Across multiple studies a common unmet need has been in the area of stroke education and prevention.4,6,9,10 Several studies have found that the majority of long term stroke survivors have some level of unmet need, with an average of 3 or more.4,6,7-9 However, little is known about the unmet needs that US stroke survivors have after an acute care discharge. In this study we build on previous research by assessing unmet needs in the period immediately following hospitalization or rehabilitation after an acute stroke. This paper describes the multidimensional range of concerns of a group of US stroke patients involved in the (blinded for review), a clinical trial conducted to improve the transition home from the hospital after stroke, described elsewhere.11,12 The objective of this analysis is to describe the short term unmet needs, and the associated demographic, psychological, social, and physical aspects of the patients included in the trial.

Materials and Methods This cross-sectional study uses secondary analyses of data from a randomized controlled trial testing a Social Work Case Management (SWCM) intervention for stroke patients transitioning home after hospitalization.11 Two of the 3 participating facilities were community based hospitals and 1 was an academic medical center. Specifically we analyze data from 160 subjects who were randomized to 2 of the 3 treatment arms and who received the SWCM intervention (the other control arm received usual care). All study procedures were reviewed and approved by the Institutional Review Board at the authors’ University and data were collected during 2016 and 2017. Patients were eligible to participate if they presented with stroke symptoms (NIHSS  1), had a confirmed acute stroke, lived at home, and were discharged from the hospital with a mRS greater than or equal to 1. Two hundred and sixty five patients were randomized to 3 groups (using an equal 1-1-1 allocation) and outcomes data were collected by phone from all patients at 7 and 90 days. The analytic sample for this study is the 160 participants who were randomized to receive a SWCM intervention. These participants underwent a biopsychosocial assessment (BPSA) within approximately 1 week of returning home after an acute stroke (Mean = 9 days; standard deviation (SD) = 9.2). These data were collected by several Master’s prepared social workers. Most of the

BPSAs were completed in person at a home visit, with a small number completed over the phone. Typically the assessments were completed in 1 session, lasting from 4590 minutes, but in some cases assessments were completed over several sessions due to patient fatigue. The BPSA covered the recent stroke event, health history and status, social history, current relationships, mental health and substance abuse, and stressors. The development and implementation of the SWCM intervention have been described previously.12 Patient age ranged from 27-92 (Mean = 67.0, SD = 12.9). Half of the stroke survivors were female and the majority were White (84.4%). After acute hospitalization 39% of patients were discharged home, 51% were discharged to acute rehabilitation, and 9% to subacute rehabilitation.

Measures The dependent variable is number of unmet needs. Unmet needs were identified by the SWCMs during the initial BPSA based on 18 different items categorized into the following 8 domains: financial, health, support system, substance abuse, stroke education, insurance, housing, and mental health. The questions associated with each item are included in Table 1. Stroke knowledge/education includes 3 items: whether the patient knows what stroke is, how to prevent a stroke, and the SWCM’s assessment of the need for more stroke information (low, moderate, or high). Financial need includes 4 items: difficulty meeting monthly expenses, not being linked to income sources for which the patient is eligible (eg, disability, cash assistance), needing assistance or advocacy in accessing entitlements (eg, Medicaid, Social Security), or having no regular source of income. Health related unmet need includes 4 items: unmet needs for medical conditions other than stroke, debilitating symptoms requiring assistance, problems taking medications, or difficulty keeping appointments. Support system unmet need includes 2 items: having household members (ie, children or other dependents) who have needs that impact the patient or lacking a functioning support system. Substance use includes 2 items: experiencing problems as a result of alcohol or drug use or seeking treatment for alcohol or drug use. For domains with multiple items, patients were considered having need in that domain if at least 1 item was identified as a need. Other domains indicated by 1 item each included needing assistance with accessing insurance for medical care; having temporary, unsafe, and/or inadequate housing; and needing mental health services. A count of all 18 items was used to determine total unmet need and was used as the dependent variable for multivariate analyses. Independent variables include demographics, type and severity of stroke, stroke effects, and stroke risk factors. The majority of these data were from the BPSA; however, data from hospital records and the 7-day phone

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Table 1. Frequency of unmet needs; items organized by domains (N = 160)

Stroke knowledge/education SWCM assessment of need for more stroke information is moderate or high Does patient know how to prevent a stroke? Does patient know what stroke is? Financial Does patient have difficulty meeting monthly expenses? Is patient linked to income sources they are eligible for? Does the patient need assistance/ advocacy in accessing entitlements? Does the patient have a regular source of income? Health Are there unmet needs for other medical or health conditions? Are there debilitating symptoms requiring assistance (ie, homecare, home delivered means)? Does the patient have problems taking medications? Does the patient have difficulty keeping appointments? Mental health Does the patient have a need for mental health services? Support system Do household members, children, or others have needs that impact patient’s ability to access or maintain treatment or care? Does the patient have a functioning support system? Insurance Does the patient need assistance with insurance for medical care? Housing Does the patient have temporary, unsafe, and/or inadequate housing? Substance use Is the patient experiencing problems as a result of alcohol or drug use? Is the patient seeking treatment for alcohol or drug use? Number of unmet needs (range: 2-9)

n

%

118 110

73.8 68.8

85

53.1

46 54 28

28.8 33.8 17.5

28

17.5

25

15.6

8

5.0

47 25

29.4 15.6

21

13.1

11

6.9

5

3.1

widowed), whether or not the patient lives alone, has Medicaid/Medicare, has private insurance coverage, source of income (employment, social security/pensions, disability, and other), household income ($0-$24,999, $25,000-$44,999, $45,000-$64,000, $65,000 and higher), and education (high school degree or less, some college, college degree or higher). Stroke type is classified as ischemic or hemorrhagic. Stroke severity was measured using the National Institute of Health Stroke Scale (NIHSS).13 The NIHSS includes 11 items that score specific abilities from 0-4. Item scores are summed with a higher total score indicating more impairment and classified into the following group: 14 = minor stroke, 5-15 = moderate stroke, 16-20 = moderate to severe stroke, 21-42 = severe stroke. Stroke effects include mobility and movement, ADLs, cognition, communication, mood, visual, social life and relationships, spasticity or tightness, pain, or other.14 Patients indicated whether a particular stroke effect was present at the time of the BPSA interview. A count of the total number of stroke effects was calculated. Stroke risk factors include high blood pressure, high cholesterol, past or current tobacco use, a family history of stroke, diabetes, physical inactivity, previous stroke, and poor nutrition. Stroke risk factors were self-reported by the patient during the BPSA interview, and recorded as present, absent, or unknown.

Data Analyses 32

20.0

16 10

10.00 6.30

6

3.80

11

6.9

4

2.5

0 0

0 0

0

0

M 4.55

SD 1.42

Abbreviations: SWCM, social work case management.

Bivariate and multivariate analyses were used to examine the relationship between total number of unmet needs and demographics, stroke type and severity, stroke effects, and stroke risk factors. Because the number of unmet needs is a count variable, all analyses used Poisson models and were conducted in Stata v.12.15 The Wald chi-square test was used to determine overall significance of the covariates and a likelihood ratio test using the lrtest command compared model fit for a series of nested models. Three blocks of variables were tested. The first block included sociodemographic variables, stroke type, and stroke severity. The next block included total number of stroke effects. The final block included the individual stroke risk factors and total number of risk factors. Variables were included in the final multivariate model if they were related to total unmet needs in bivariate models at P less than.10 and those that significantly contributed to model fit (P < .05) were carried over into the next block. Finally, predicted margins for the number of unmet needs were calculated for each variable based on the final multivariate Poisson regression model with covariates fixed at the mean.

Results interview were used when BPSA data were missing. Demographic variables include age (18-50, 51-64, 65-74, 75 and older), sex, race (White, non-White) relationship status (single, married/partnered, divorced/separated,

Unmet Needs The number of unmet needs ranged from 2-9 (mean = 4.55, SD = 1.42, median = 4, interquartile range (IQR) = 1) (Fig 1).

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0

10

20

30

40

50

4

2

4

6 Count of unmet needs

8

10

Figure 1. Frequency distribution of the total number of unmet needs during the acute poststroke transition.

Table 1 describes unmet need by domain. Stroke knowledge and education was the most frequently endorsed unmet need (73.8%) with well over half of patients having a moderate or high level of need for more stroke information (68.8%), half not knowing how to prevent a stroke (53.1%), and over a quarter not knowing what a stroke is (28.8%). Financial (33.8%) and health (29.4%) were the next most prevalent categories of unmet need. Twenty percent of patients had unmet mental health service needs and 10% had unmet needs that related to their support system. Less than 10% of the sample had unmet needs related to insurance and housing, while no one had selfreported issues with substance use.

Demographic Differences in Unmet Needs Most participants were on disability or relying on a pension for income (Table 2), and only 14.5% were employed at the time of data collection. In terms of demographics, only household income and education were significantly related to unmet needs (P < .05 or less) in bivariate (unadjusted) Poisson regression analysis. Patients in the lowest income category had significantly more unmet needs (M = 5.77, SD = 1.48) than all others, while those with a college degree or higher had fewer unmet needs (M = 3.69, SD = .98) than those with some college (M = 4.75, SD = 1.59) or a high school degree or less (M = 4.90, SD = 1.26).

Stroke Type and Stroke Severity The majority of the sample had ischemic stroke (86.3%). The mean NIHSS score was 5.6 (SD = 5.2; range 0-26) with most of the sample having scores between 1 and 4 (55.6%) or 5 and 15 (37.5%). There was no statistically significant

association between stroke type or stroke severity and number of unmet needs (Table 2).

Stroke Effects and Stroke Risk Factors The mean number of stroke effects was 3.44 (SD = 2.05, range 0-9). Mobility and movement (71.9%), activities of daily living (53.8%), and cognition (46.3%) were the most prevalent effects patients experienced following their stroke (Table 3). Patients with effects on mood and social life and relationships had significantly more unmet needs on average than those without these effects. High blood pressure (78.1%), high cholesterol (66.9%), and tobacco use (45.6%) were the most common stroke risk factors identified (Table Suppl 1) with a mean number of 3.43 risk factors overall (SD = 1.61, range 0-8). However, physical inactivity was the only risk factor associated with unmet needs, with those who were physically inactive having significantly more unmet needs than patients without this risk factor (x2 = 3.99; P = .046).

Multivariate Results In multivariate Poisson regression analyses, only income and total number of stroke effects remained significantly related to the number of unmet needs (Table Suppl 2). Patients with incomes of $25,000 or greater had roughly 75% fewer unmet needs compared to the lowest income group while a 1 unit increase in the number of stroke effects was associated with a 4% increase in unmet needs. Controlling for number of stroke effects, the mean number of unmet needs range from 5.59 for the lowest income group to 3.92 for the highest income group. Controlling for income, patients

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Table 2. Mean total number of unmet needs by demographics and clinical stroke features (N = 160) Total

Age 18-50 51-64 65-74 75 and older Sex Male Female Race White Non-white Relationship status Single Married/partnered Divorced/separated Widowed Lives alone Yes No Primary insurance Medicaid/Medicare Private Sources of income Employment Social security/pension Disability Other Household income* $0-$24,999 $25,000-$44,999 $45,000-$64,000 $65,000 and higher Refused/unknown Educationy High school degree or less Some college College degree or higher Stroke type Ischemic Hemorrhagic Stroke severity (NIHSS score) 1-4 5-15 16-20 21-44

Total unmet need

Wald x2

P

n

%

M

SD

20 42 50 48

12.5 26.3 31.3 30.0

4.65 4.64 4.40 4.58

1.18 1.56 4.43 1.40

.28

.836

80 80

50.0 50.0

4.41 4.69

1.35 1.48

.66

.415

135 25

84.4 15.6

4.52 4.72

1.37 1.67

.19

.664

16 99 25 20

10.0 61.9 16.6 12.5

4.44 4.26 5.20 5.24

1.20 1.22 1.47 1.85

6.29

.098

33 127

20.6 79.4

4.84 4.47

1.46 1.40

.81

.367

115 39

74.7 25.3

4.68 4.10

1.45 1.23

2.13

.145

23 93 13 30

14.5 58.5 8.2 18.9

4.09 4.66 4.31 4.63

1.2 1.5 1.18 1.38

1.52

.677

35 29 36 32 28

21.9 18.1 22.5 20 17.5

5.77 4.62 4.00 3.75 4.57

1.48 1.24 .93 .95 1.50

18.22

.001

60 61 39

37.5 38.1 24.4

4.90 4.75 3.69

1.26 1.59 .98

8.43

.015

138 22

86.3 13.8

4.55 4.55

1.49 .91

.00

.991

89 60 4 3

55.6 37.5 2.5 1.9

4.60 4.42 6.00 4.00

1.51 1.28 .82 0

2.31

.679

Abbreviations: NIHSS, National Institute of Health Stroke Scale. Unadjusted results based on bivariate Poisson model. *$0-$24,999 significantly different compared to all other income categories in pairwise comparisons. † College degree or higher significantly different compared to all other education categories in pairwise comparisons.

with 0 to 2 stroke effects have an average of 4.14 unmet needs. The mean number of unmet needs is 4.52 for those with 3-5 stroke effects and 5.14 for those with 6-9 stroke effects.

Discussion In this study of US acute stroke survivors during the immediate post discharge period we identified many

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Table 3. Mean total number of unmet need by stroke effects (n = 160) Total unmet needs n

%

M

SD

Mobility and movement Yes 115 71.9 4.70 1.43 No 45 4.2 4.18 1.32 Activities of daily living (ADL’s) Yes 86 53.8 4.84 1.55 No 74 46.3 4.22 1.17 Cognition Yes 74 46.3 4.89 1.43 No 86 53.8 4.26 1.35 Communication Yes 69 43.1 4.71 1.49 No 91 56.9 4.43 1.36 Mood Yes 53 33.5 5.17 1.59 No 105 66.5 4.25 1.22 Visual Yes 49 30.6 4.86 1.62 No 111 69.4 4.41 1.3 Social life and relationships Yes 47 29.9 5.04 1.55 No 110 70.1 4.27 1.23 Spasticity or tightness Yes 30 18.8 5.00 1.60 No 130 81.3 4.45 1.36 Pain Yes 27 16.9 5.22 1.76 No 133 83.1 4.41 1.3

Wald x2 P 1.90

.168

3.37

.067

3.53

.060

.68

.408

6.55

.011

1.46

.226

4.32

.038

1.64

.200

3.22

.073

Mobility and movement: Harder to walk, get in/out of bed, get in/out of the care, keep your balance, fall more easily. Activities of daily living: Harder to dress, bathe, eat, prepare meals, or go outside? Cognition: Harder to think, concentrate, or remember things? Communication: Trouble communicating with others, speaking, readings, or using numbers? Mood: Feeling anxious, moody or having mismatched and/or unstable emotions, depressed, like a different person. Behavior changes. Visual: Trouble with blind spots, double vision, blurry vision, blinking, other visual perception problems. Social life and relationships: harder to work or participate in social and leisure activities or hobbies; relationships with family or friends have become more difficult or stressed. Spasticity or tightness: More stiffness in your arms, hands, or legs? Pain: New pain or pain more frequent or more severe. Unadjusted results based on bivariate Poisson model.

needs,6-8 we observed the same associations of stroke effects and short-term unmet needs, such that those with more stroke effects had more needs. Similar to Sumathipala et al,10 we found that other health concerns, in addition to stroke, were common unmet needs in our sample. Consistent with prior literature there was a high level of need for more stroke information with 73.8% of participants reporting this unmet need. Other studies reported this unmet need in over 50% of their samples.4,6,9 While stroke education is typically part of an acute stay, but there is no consensus on how best to educate acute stroke patients. Despite efforts to educate survivors prior to discharge, uptake and application from predischarge education is poor and needs to continue postdischarge.16,17 A video intervention improved stroke knowledge among inpatient stroke patients and showed that improvement continued for 30 days post hospitalization18 and interactive education kits have shown some promise in terms of patient engagement.19 Two studies of community based stroke education have found that long-term and individually managed education interventions can improve stroke knowledge.20,21 However, the length and intensity of these interventions is likely not feasible for acute stroke admissions. Financial need was identified by a third of our participants. Finances are a very important factor as stroke can immediately impact short-term income and have longterm effects on lifetime earnings if disability continues. In addition, Martinsen et al22 identified that emotional distress among stroke survivors is associated with the financial impact of employment issues. Only 10 percent of our sample reported unmet needs for social support, lower than those reported by longer term survivors.4,22 This may reflect the early timeframe of data collection, immediately after discharge home. Sometimes referred to as a time of crisis, this early recovery period is when survivors are most likely to have good support which then erodes over time as survival length increases. Andrew et al23 discuss the impact of stroke survivor needs on caregivers. They found that the odds of a caregiver experiencing moderate to extreme impacts increase with the number of unmet survivor needs. This suggests that caregiver burden may lead to decreased social support for the survivor over time, particularly for survivors with more needs.

Summary and Conclusions unmet needs in a wide range of domains. There were no participants that reported 0 unmet needs, and the most prevalent needs were stroke education, financial, and health related. Higher income and education were associated with fewer unmet needs. The average number of unmet needs was higher than that reported in prior literature, but this is not surprising in that participants were reporting needs immediately postdischarge, rather than later in recovery. Consistent with earlier findings that physical disability is associated with long term unmet

Considering sociodemographic characteristics and their associations with unmet need can help providers target interventions to those who may be at greater risk of needing more care. Having a lower income and less education functioned as a risk factor for the survivors in this study, as did having more stroke effects. Upon discharge these patients can be identified for more intensive intervention to improve recovery. Those who were physically inactive were also at risk for having ongoing unmet needs. This modifiable risk factor could be the target of early

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intervention to avoid stroke altogether or, if stroke is unavoidable, to decrease the negative associations with unmet needs in the recovery period. We did not find any statistically significant associations between unmet needs and race, age, gender, type of stroke, or stroke severity. One previous study found nonWhite ethnicity was associated with more unmet needs,4 while age has had mixed results in previous studies. McKevitt et al4 found no differences by age, while older age was associated with fewer unmet needs in 2 other studies.6,7 Although the mean NIHSS score of 5.6 for this sample is higher than one would expect among all hospitalized stroke patients,24 the range of severity is somewhat limited. The relationship between stroke severity and psychosocial needs requires additional investigation among survivors experiencing strokes of greater severity. We have identified several factors that point to the need for targeted intervention in the early recovery period. Using these results to identify needs early, one can lead to treatment that is optimized to the individual stroke survivor.

Strengths and Limitations This study provides a look at unmet needs in the short term recovery period following an acute stroke and provides information on patients in the United States, which has previously not been reported. We used an expensive view of unmet needs, assessing physical, psychological, and social domains to better understand the full spectrum of needs in acute recovery. Predicting the domain and number of unmet needs by income and education can be useful in targeting services after an acute care discharge. This type of targeting can improve efficacy of interventions and services provided to stroke survivors in the community. Interpretation of study results must be considered in light of the cross-sectional nature of the study design. Our sample was not diverse in terms of race and ethnicity, thus limiting value of the results to nonWhite communities. Participants discharged from inpatient rehabilitation facilities that are Commission on Accreditation of Rehabilitation Facilities 25 certified may have had more exposure to stroke education and community resources compared to those who did not get discharged from Commission on Accreditation of Rehabilitation Facilities facilities. In addition, the way unmet needs have been examined in the literature make it challenging to compare data across studies. Our method of parameterizing unmet needs by different domains containing different item numbers, affected the weight of each need type and is likely not the ideal way to measure unmet need. Future research should consider use of a standard measure, such as that provided by the LUNS Study Team5 to assess unmet needs poststroke.

Conflict of Interests Authors have no interests or conflicts to declare.

7 Acknowledgments: The authors would like to thank Constantinos Coursaris, as well as the MISTT Study participants, sites, and staff for their support of this work.

Supplementary materials Supplementary material associated with this article can be found in the online version at doi:10.1016/j.jstrokecere brovasdis.2019.104462.

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