Psychosocial sequelae of stroke in working age adults: A pilot study

Abstract

OBJECTIVE:

Few prospective studies have examined psychosocial symptoms in young adult stroke survivors. The purpose of this pilot study was to examine the feasibility of methods to assess and describe the presence of symptoms and their characteristics in young adult stroke survivors.

METHODS:

A prospective descriptive design using PROMIS and NeuroQoL patient reported outcomes was employed. Stroke survivors aged 18–65 admitted for acute ischemic stroke completed baseline measures prior to hospital discharge; the same measures were collected by telephone interview six months later.

RESULTS:

Thirty patients were recruited and 18 (60%) completed follow-up measures. There was wide variability in scores across patients for each patient reported outcome that persisted at six months. NeuroQoL cognitive function was the only patient reported outcome to have a statistically significant change from baseline to 6 months (p= .045).

CONCLUSIONS:

It is feasible to recruit and retain young adult stroke survivors in a prospective study. Wide variability in scores across patients suggests different trajectories of recovery in the first 6 months after stroke. Neuroscience nurses can assess for these symptoms and provide individualized interventions to aid in self-management of burdensome symptoms.

Introduction

In the past decade there has been a 44% rise in strokes among young adults of working age (18–65 years as defined by the American Stroke Association), especially in those 25–44 years of age,^1,2 and stroke remains the most common cause of adult disability.^3,4 The alarming rise in strokes in young adults has resulted in further study of the epidemiology and etiology of stroke in this population, but less is known about the long term consequences of stroke at a younger age of onset. Specifically, there is a significant gap in the evidence on psychosocial sequelae of stroke in young adults.

While there is no universally accepted age range to denote young stroke survivors, the National Stroke Association¹ refers to young stroke survivors as 18 to 65 years old. There is growing evidence that there are distinct differences in functional and quality of life outcomes between young and older adult stroke survivors. Mortality rates among young stroke survivors are lower than among their elderly counterparts; thus young stroke survivors live longer post-stroke and their disability begins when they are working and simultaneously fulfilling key familial and societal roles including forming families, making decisive career moves, and living an active social life.^5–7 Studies show that young adult stroke survivors tend to prioritize social roles and life participation goals; however, they feel such goals are not acknowledged by health care professionals who tend to focus on functional goals such as regaining basic activities of daily living or preventing falls during stroke recovery.^5,8 In order to meet their goals after stroke, patients have to regain complex skills to manage the consequences of stroke, not only in the acute phase, but also for years after their stroke.⁹ Because of the longer life span and related developmental tasks, young adult stroke survivors are more vulnerable to the effects of psychosocial problems post stroke and require significant adjustments to daily life than older adult stroke survivors in order to engage in self-management of symptoms post stroke.^5,6,10

Psychosocial symptoms reported in young adult stroke survivors include anxiety,^11–13 fatigue,^13,14 cognitive failures,^9,15,16 sleep problems such as disordered breathing and insomnia,^17,18 and depressive symptoms,^12,13 which have shown varying relationships with outcomes such as physical functioning, disability, return to work,^19,20 and quality of life.^12,14,21 Although these symptoms have been described in prior studies, there has not been systematic study of their frequency or the effectiveness of interventions to treat them in this population². Understanding the symptoms experienced after stroke that impact overall well-being are of primary importance to neuroscience nurses and other healthcare professionals who care for young adult stroke survivors. Before precision health interventions tailored to the unique needs of this population can be developed and tested, we first need knowledge of symptom presence, intensity, and distress, or bothersomeness, to inform strategies for managing these symptoms and to effectively promote self-management of the multiple chronic conditions that are associated with stroke. Thus, the purpose of this pilot study was to examine the feasibility of methods to assess and describe the presence of symptoms and their characteristics in young adult stroke survivors. The following specific aims were proposed to begin to fill this significant knowledge gap. AIM 1: describe the presence, intensity and distress of symptoms (depression, fatigue, cognition, and fear of stroke recurrence) in young adult stroke survivors at baseline and 6 months post discharge. AIM 2: Describe well-being in young adult stroke survivors (neurological quality of life and functional outcomes) at baseline and 6 months post discharge.

Methods

An exploratory descriptive design was used to address the pilot study aims. Institutional Review Board approval to conduct the study was obtained and written informed consent and HIPPA authorization were obtained prior to data collection. Prior to hospital discharge, patients were invited to participate in the study and if they consented, baseline data was collected by interview. Follow-up data was collected via phone at 6 months post-stroke. Participants were enrolled from a Joint Commission certified Comprehensive Stroke Center at a large Midwest academic center. Consecutive admissions were screened for eligibility and invited to participate in the study.

Inclusion criteria:

Patients admitted for acute ischemic stroke and between 18 and 65 years of age were eligible for enrollment in the study. As suggested by Harris and Bettger⁸ the age range of 18–65 years is appropriate for study of strokes in working age, young adults because the lower limit divides childhood and adulthood and the upper limit marks the transition between working age and retirement.

Exclusion criteria:

Patients with stroke that is not ischemic (e.g. subarachnoid hemorrhage; intracerebral hemorrhage) and stroke that is not the primary reason for admission were excluded. Patients unable to provide consent and those with past history of cognitive impairment were excluded as proxy completion of symptom intensity and burden is not appropriate. Patients who discharged to skilled nursing facility were excluded as their follow up needs and support systems are likely different than those who return to community living. Patients who discharged to hospice care were excluded for the same reason.

Demographic and Clinical Data:

The National Institute of Nursing Research (NINR) Common Data elements (CDEs) for demographic information including age, sex, race, ethnicity, education level, employment status, and marital status were collected at baseline. Date and location of stroke, hospital admission and discharge dates, and National Institutes of Health Stroke Scale (NIHSS) score were abstracted from the participant’s medical record and entered into a data collection tool. The NIHSS is a standardized assessment scale that describes stroke-related neurological deficits and serves as a measure of stroke severity.^1,22 The NIHSS is widely used and has a high degree of both reliability and validity.²²

Patient reported outcomes were selected based on the literature on psychosocial symptoms in stroke patients. PROMIS is a publicly available system of patient reported health outcomes representing the physical, mental, and social domains which together comprise global health; a patient reported measure of quality of life. Quality of Life in Neurological Disorders (Neuro-QoL) is a set of 13 brief self-report measures that assess the health-related quality of life (HRQOL) of adults and children with neurological disorders.²⁴ It includes items in physical, mental and social domains. Both PROMIS and NeuroQoL short forms are 6–9 items each and can be completed in 2 minutes or less by most patients. Reliability and validity of PROMIS and NeuroQoL have been well established.^23–26 The following patient reported outcomes were assessed at baseline and 6 months: PROMIS depression, fatigue, and applied cognition-general concerns and NeuroQoL cognitive function, depression, fatigue, positive affect and well-being, and satisfaction with social roles and responsibilities. Fixed item short forms were used for all measures.

Functional ability was measured by the Barthel Index of Activities of Daily Living (BI). The BI is more sensitive to change than other common stroke scales.³ Literature on the minimal clinically important differences detected with BI suggest that a change of ≈2 points is meaningful and beyond measurement error. Internal consistency has been described as good (α=0.80–0.89) to excellent (α= 0.93.)³

Analysis

PROMIS and NeuroQoL patient reported outcomes total scores were calculated and converted to the corresponding t-scores as described in their respective scoring manuals.^27,28 The t-scores result in scores that can be compared across measures. Each scale has a range of 0–100 where 50 represent the reference population mean. One standard deviation is 10 points and a change of one-half standard deviation is considered meaningful. Descriptive statistics including median (minimum, maximum) were calculated for each instrument at baseline and 6 months. Paired t-test was used to compare scores for each continuous outcome between baseline and 6 month follow up. Fisher’s exact test was used to compare categorical outcomes.

Results

In an 8 month timeframe, 65 patients met the inclusion criteria. Of the 44 eligible patients approached about participating, 30 (68%) consented to participate. Those we were able to contact for the follow-up interview were willing to complete the measures as only one (3%) withdrew (declined completion of follow-up interview). At 6 month follow up, 18 (60%) completed the measures; 2 patients were deceased prior to follow up. These data demonstrate that it is feasible to enroll and collect follow-up data in this setting and population.

During the study, 120 adult stroke patients ranging from 32 to 64 years (mean 53.9) were screened for inclusion in the study. The most common screen failure was primary diagnosis of stroke listed in the medical record but admitted for a different reason (e.g. surgical procedure). Inability to give consent due to language impairment and exclusion of stroke after MRI performed for focal deficits was also common reasons for screen failure. Twenty-one stroke survivors met the inclusion criteria but were discharged to home or rehabilitation after very short hospital stays and before recruitment could be initiated. In response to short hospital stays that interfered with study recruitment, a protocol modification was implemented to extend time past discharge for recruitment and baseline data collection and study staff increased availability for recruitment later in the day, after tests and procedures were completed. There were no significant differences between participants in the overall group compared to those who completed 6 month follow-up (Table 1).

Table 1.

Demographic Data Summary

Factors	Overall (N=30)	Only Baseline (N=12)	Baseline and Follow-up (N=18)	Difference between baseline and baseline plus follow up p value
Age				0.6211
Mean (SD)	55.567 (9.405)	54.500 (11.461)	54.500 (11.461)
Range	34 – 64	34–64		0.7452
Sex
Female	9 (30.0%)	4 (33.3%)	5 (27.8%)
Male	21 (70.0%)	8 (66.7%)	13 (72.2%)
Race				0.2133
White	26 (86.7%)	10 (83.3%)	16 (88.9%)
Black or African American	2 (6.7%)	0 (0.0%)	2 (11.1%)
Asian	1 (3.3 %)	1 (8.3%)	0 (0.0%)
Other or Chose not to disclose	1 (3.3 %)	1 (8.3%)	1 (8.3%)
Ethnicity				0.43
Not Hispanic or Latino	29 (96.7%)	11 (91.7%)	18 (100.0%)
Hispanic or Latino	1 (3.3%)	0 (0.0%)	1 (8.3%)
Marital status				0.1843
Married/Committed Relationship/Partnered	24 (80.0%)	11 (91.7%)	13 (72.2%)
Single/Never married	2 (6.7%)	0 (0.0%)	2 (11.1%)
Divorced	3 (10 %)	0 (0.0%)	3 (16.7%)
Separated	1 (3.3%)	0 (0.0%)	3 (16.7%)
Highest level of education				0.4163
Less than High school	2 (6.7%)	0 (0.0%)	2 (11.1%)
High School Diploma or GED	9 (30.0%)	3 (25.0%)	6 (33.3%)
Some college / Vocational	9 (30.0%)	6 (50.0%)	3 (16.7%)
Bachelor’s degree	6 (20.0%)	2 (16.7%)	4 (22.2%)
Graduate degree	4 (13.3%)	1 (8.3%)	3 (16.7%)
Employment status				0.3203
Professional	5 (16.7%)	2 (16.7%)	3 (16.7%)
Management/Business owner	2 (6.7%)	2 (16.7%)	0 (0.0%)
Trades	7 (23.3%)	4 (33.3%)	3 (16.7%)
Clerical	1 (3.3%)	0 (0.0%)	1 (5.6%)
Retired	5 (16.7%)	2 (16.7%)	3 (16.7%)
Other	10 (33.3%)	2 (16.7%)	8 (44.4%)
Admission NHSS Score				0.7401
Range	0.000 – 22.000	0–17	0–22
Median (interquartile range)	2.5 (2, 7)	3 (2, 9.5)	2 (1, 4)
Discharge disposition				0.8353
Home without any services	20 (66.7%)	8 (66.7%)	12 (66.7%)
Inpatient rehabilitation	4 (13.3%)	1 (8.3%)	3 (16.7%)
Skilled nursing facility for short term rehab	5 (16.7%)	2 (16.7%)	3 (16.7%)
Other	1 (3.3 %)	1 (8.3%)	0 (0.0%)
Stroke Location
Left Hemisphere	16 (53.3%)	6 (50%)	10 (55.5)	.9133
Right Hemisphere	11 (36.7%)	5 (41.7)	6 (33.3%)
Bilateral	1(3.3%)	0 (0%)	1 (5.5%)
Cerebellar	2(6.7%	1 (8.3%)	1 (5.5%)

¹t-Test;

²Chi-Square Test;

³Fishers Exact Test

There were, overall, mild limitations in function of the study cohort. National Institute of Health Stroke Scale (NIHSS) scores ranged from 0–22 (possible 0–42; higher scores equal more severe) at admission; most (70%) had scores of 0–4 indicating minor stroke. Baseline functional ability as measured by Barthel Index (BI), was high with 56% of the total sample and 44% of those completing measures at baseline and follow-up scoring ≥ 95 of 100 points (10 items scored 10, 5, or 0; high score indicates better function). At 6 months 78% reported BI scores ≥95 (p=0.022). Additionally, 21 (70%) patients were discharged home without additional rehabilitation or home care services.

Table 2 shows the range, means, and percent of patients with scores meaningfully worse than the general population. Meaningful changes are considered those important or detectable to the patients completing the measures. Meaningfully changes in scores are considered to be one-half of one standard deviation, or 5 points. There was wide variability in scores across patients, thus, the mean scores were very close to the population mean.

Table 2.

Patient Reported Outcomes at baseline and 6 months

	Baseline N=30		6 Months N=18
Patient reported outcome	Median (range)	Scores meaning-fully worse than general population N (%)	Median (range)	Scores meaning-fully worse than general population N (%)
Satisfaction with social roles and activities (NeuroQoL)	42.45 (36.7–56.7)	20 (66.7)	45.75 (38.6–60.5)	8 (44.4)
Positive affect and well-being (NeuroQoL)	54.9 (41–68)	2 (6.7)	53.25 (42.7–68)	2 (11.1)
Cognitive function (NeuroQoL)	41.4 (28.6–64.2)	17 (56.7)	50.25 (27.3–64.2)	7 (38.9)
Cognitive function (PROMIS)	40.63 (23.13–63.17)	15 (50)	49.95 (28.55–63.17)	8 (44.4)
Fatigue (NeuroQoL)*	49.80 (29.5–66.2)	13 (43.3)	42.80(29.5–63.5)	4 (22.2)
Fatigue (PROMIS)† *	57.50 (33.4–76.8)	18 (60)	51.65 (33.4–73)	7 (38.9)
Depression (NeuroQoL) *	46.05 (36.9–60.6)	5 (1.7)	44.20 (36.9–67.3)	4 (22.2)
Depression (PROMIS)† *	53.40 (38.4–68)	8 (2.7)	48.30 (38.4–80.3)	5 (2.8)

^*higher scores = more severe symptoms

^†N=28 (baseline)

Statistical analysis using paired t-test (see Supplemental Digital Content) revealed that only Barthel Index and NeuroQoL Cognitive Function showed a statistically significant improvement from baseline to 6 month follow up (p=0.045) but Cognitive Function measured by PROMIS was not a statistically significant difference. There were no other statistically significant differences in t-scores from baseline to 6 month follow up. Two-thirds of participants reported satisfaction with social roles scores less than the populations mean (poorer function) (table 2). At six months 44% endorse lower satisfaction with social roles with only 11% scoring above the population mean. Almost the reverse pattern is seen for positive affect and well-being.

Limitations

While long-term follow up beyond 6 months to describe the relationships among the multiple chronic symptoms and well-being is warranted, it was not possible in this small pilot study. A small sample of subjects was recruited from one institution which limits generalizability of the study findings. Measures were selected from those most prevalent in the literature on symptoms in young adult stroke survivors. It is possible that other psychosocial symptoms and related factors were not measured yet are burdensome in this patient population. Because of our emphasis on patient reported outcomes, only survivors who could respond to the questionnaires were included in the study; those with more severe impairments such as aphasia or confusion are not represented in this sample and may contribute to the findings. Despite these limitations, this is among the first studies to prospectively assess patient reported outcomes in young adult stroke survivors.

Discussion

This pilot study aimed to describe feasibility of methods to prospectively assess and describe the presence of symptoms and their characteristics in young adult stroke survivors. We were successfully able to recruit and retain 60% of a sample of young adult stroke survivors for six months. However, many of these patients had short lengths of hospital stay resulting in some difficulty with recruitment. Strategies to identify and recruit patients early in their stay are necessary. All but one of the patients who could be reached at the 6 month follow up were willing to complete the measures. Young adult stroke survivors may have competing demands with work and family life that make participation in research a lower priority so identification of strategies to engage these patients over time is necessary. Such strategies may include using web-based surveys and e-mail communication rather than methods that rely on telephone contact alone. In a study of 485 Dutch stroke patients in inpatient and outpatient rehabilitation with mean ages of 60.4 and 57.3, respectively, 44% chose to receive the patient reported outcome measures by e-mail when given a choice between postal or e-mail delivery and 85% were retained until the 12 month follow up.²⁹ Conversely, in a pragmatic randomized controlled trial, 2074 stroke patients across England and Wales were randomly assigned to delivery of patient reported outcome measures by one of four methods (face to face, telephone, postal delivery, and e-mail delivery) for a 6 month post stroke follow up assessment.³⁰ Findings showed that across groups (age, stroke severity, stroke type), on-line return rates were the lowest with no difference between the other approaches. With regard to age, the groupings were under 75, 75 to 84 and over 85; those in the older cohorts had much lower online return rates than those under 75. Whether these findings will hold true for an even younger cohort is unknown.

The lack of significant findings in this small pilot study are likely the result of the small sample size along with the descriptive nature of the study; no intervention was knowingly imposed that would alter the symptom experience. The data are congruent with prior research showing that even in the setting of mild stroke with few physical function impairments, young adult stroke survivors experience psychosocial problems that may be reduced with self-management strategies. Although there was a statistically significant change in Barthel Index score from baseline to 6 month follow up (p= 0.022), symptoms did not similarly improve. As suggested by prior research, psychosocial symptoms seem to persist across time. Studies in the Netherlands with large sample sizes show that as long as twelve years after stroke patients have difficulty returning to work,³¹ fatigue,¹³ and cognitive failures¹⁵ although findings must be carefully considered as these samples were enrolled from 1980–2010 during which time stroke care dramatically changed. Most prior studies employed cross sectional designs leaving a gap in the knowledge of post stroke symptom trajectories in young adult stroke survivors. Symptom trajectories can provide insight into disease or symptom onset, progression, and resolution and as a result can be influential in planning delivery of interventions.³² Two studies specifically examined trajectories of psychosocial symptoms in stroke patients. In a study of 23 Australian stroke survivors age 37–94 years, results of semi structured interviews and a measure of psychological distress (Kessler-10) showed four trajectories in the first 12 months post stroke: resilience, ongoing mood disturbance, emergent mood disturbance, and recovery from mood disturbance.³² In a study of 351 stroke patients with a mean age of 66.8 years in the Netherlands, investigators identified four trajectories of health related quality of life (HRQoL): high, low, recovery, and decline over the first 12 months post stroke.³³ Psychosocial factors (admission to rehabilitation, lower self-efficacy, proactive coping style, greater helplessness, and passive coping) were the most important factors in identifying stroke patients at risk of unfavorable HRQoL outcomes.³³ Findings from the present study show significant variability in symptom severity across patients that requires further investigation with larger sample sizes over a longer time. This wide variability in scores suggests a need for individualized assessment and intervention for symptoms after stroke in young adults.

Research has shown that stroke patients perceive lower health related quality of life (HRQoL) than the general population.^33,34 In this small sample, positive affect and well-being had higher mean scores at baseline and 6 month follow up (56.88, 54.61; p= 0.396) compared to satisfaction with social roles and activities (43.78, 46.5 p= 0.077). Similarly, Katzen, et al.¹⁸ reported that 57.6% of ischemic stroke patients (mean age 62) an average of 99 days post stroke had satisfaction with social roles meaningfully worse than the population mean; positive affect and well-being were not measured. Given that the focus of many working age stroke survivors is on work and family, there is need for further investigation into the impact of stroke on satisfaction with social roles and activities and its relationship to quality of life or well-being. Nursing care focused on assessment of these factors and interventions to help patients self-manage them may be influential in improving patient outcomes in the domain of social roles and activities.

Research into the predictors of HRQoL has identified demographic and stroke-related factors such as age, physical impairment, and functional independence to be independent predictors of HRQoL³³ but many studies are limited by their cross sectional designs and small sample sizes. Psychological factors such as neuroticism, pessimism, and coping style were more important in determining HRQoL trajectory membership than demographic and stroke-related factors in a sample of 351 stroke patients with a mean age of 66.8 in the Netherlands.³³ Younger (<62 years) stroke survivors reported poorer health outcomes as measured by the SF-12 than those 62–73 years of age.³⁵ Those under 62 years reported greater physical role limitation, emotional role limitation and mental health distress than older age groups. Stroke severity and quality of life (Ferrans and Powers Quality of Life Index) had a negative correlation in a study of 44 Polish patients (mean age of 64 years) with mild or moderate stroke.³⁶ A strong negative correlation between quality of life and depressive symptoms was also observed along with negative correlations between stroke severity and the family life subscale.³⁶ Excessive fatigue, depressive symptoms, and anxiety were associated with lower quality of life in a sample of 170 young (<50 years) stroke patients in the Netherlands.¹⁴ Similarly, after 6 years follow-up, a sample of 190 Norwegian stroke survivors aged 15–49 had lower HRQoL compared to age and sex matched controls without stroke on physical functioning, role limitations, and social functioning subscales; those who had depressive symptoms, fatigue, or were unemployed had significantly lower scores on all subscales of the SF-26.^{12, 19}

NeuroQoL Cognitive Function showed a statistically significant improvement from baseline to 6 month follow up (p=0.045) but Cognitive Function measured by PROMIS did not show a statistically significant difference. Further investigation is needed to understand this variance, but it is likely the result of differences in the items on these scales. Although there is some overlap in items, particularly about memory and concentration, NeuroQoL has more emphasis on the impact of cognitive problems in everyday activities such as planning and keeping appointments, following complex directions, and learning new things. It could be that by 6 months the demand for managing new daily activities is less or that the survivor has learned strategies to support these activities by the 6 month follow-up. Cognitive impairment in young stroke survivors has been reported as long as 11 years post stroke with 50% of patients reporting below-average performance in at least one cognitive domain⁴. In a study using the NeuroQoL executive function measure, 45.6% of ischemic stroke survivors (mean age 62) had scores meaningfully worse than the population.¹⁸ Neuroscience nurses should consider assessment and intervention for cognitive difficulties regardless of other disability. Further study is needed to determine which cognitive abilities are most burdensome to young adult stroke survivors.

Conclusions

Findings from this small pilot study to examine feasibility of measuring patient reported outcomes in young adult stroke survivors show that it is feasible to recruit and retain young adult stroke survivors although alternative strategies for retention should be considered. Neuroscience nurses are well positioned to assess for psychosocial sequelae in not only the acute stroke phase, but also over time. There was wide variability in symptom presence and severity across stroke patients that did not change at the 6 month follow-up suggesting the need for individualized self-management interventions that neuroscience nurses can develop, test, and implement into practice. Nurses who care for patients in the post-acute period in ambulatory settings are well suited to assist young adult stroke survivors in symptom self-management. There are many research questions that neuroscience nurses can investigate including the trajectory of psychosocial symptoms over time; risk and protective factors that can influence self-management of these symptoms; and interventions that young adult stroke survivors can use to self-manage psychosocial symptoms.