Abstract P232: Patient and Caregiver Agreement on Stroke Survivor Quality of Life in the Year After Stroke Onset

Stroke ◽  
2021 ◽  
Vol 52 (Suppl_1) ◽  
Author(s):  
Adam H de Havenon ◽  
Robynne Braun ◽  
Alen Delic ◽  
Ka-ho Wong ◽  
Steven C Cramer ◽  
...  

Background: The burden of post-stroke disability falls on both stroke survivors and their caregivers. To better understand patient and caregiver perspectives on post-stroke quality of life (QoL), we explored their agreement on a QoL testing instrument in the year after an ischemic stroke. Methods: This is a secondary analysis of the IMS-III trial. The primary outcome are scores of the 5 domains of the EQ-5D-3L during the year after stroke onset. We included pairs of EQ-5D-3L scores obtained from both the patient and their proxy to determine the level of agreement and Cohen’s Kappa for the individual domains. Results: There were 1,042 instances of a paired EQ-5D-3L during the first year of follow-up, derived from six study visits described in Table 1. The agreement between patient and proxy was highest for the Mobility and Self-Care domains of the EQ-5D-3L (Table 2), achieving a Kappa of 0.7407 and 0.7567, respectively. The agreement for the Anxiety/Depression domain of the EQ-5D-3L was lowest, with a Kappa of 0.6009 (Table 2). Conclusion: In the year after ischemic stroke, the agreement between patients and their caregivers was highest for the motor domains of QoL and lowest for the mental health domain. Depression and anxiety are known to be under-diagnosed and under-treated after stroke. Further research is warranted to explore the reasons for less agreement between patient and caregiver perception of the stroke survivor’s mental health QoL after ischemic stroke.

Author(s):  
KC Mabilangan ◽  
S Healy ◽  
T Fantaneanu ◽  
S Whiting

Background: Growing evidence has that a suggested that mental health strongly influences quality of life (QoL) in adolescents with epilepsy. In addition, research has suggested that these mental health issues are associated with increased seizure burden and worsened health outcomes. Despite this, and the elevated rate of mental health issues in this population, seizure control tends to be the dominant or sole concern for treating physicians. Methods: In order to look at potential predictors of QoL in adolescents we looked at seizure related data, demographic variables, and comorbid conditions in 70 adolescents with epilepsy aged 14 to 18 (M= 16.3l; 37 males, 33 females) enrolled into an epilepsy transition clinic. Results: Regression analysis found that mental health remained a significant and independent predictor of QoL even when other significant seizure related variables were accounted for (t(58)= -3.44, p= .001). Furthermore, when looking at the individual subscales of patient QoL (e.g., memory, social support, stigma), mental health was consistently found to be the strongest correlate. Conclusions: These results demonstrate that in order to ensure the best outcomes for transition-aged adolescents with epilepsy, it is important to not only manage and treat seizures, but also to assess and treat mental health issues.


2021 ◽  
Vol 30 (161) ◽  
pp. 210080
Author(s):  
Rebecca A. Gersten ◽  
Amanda C. Moale ◽  
Bhavna Seth ◽  
Judith B. Vick ◽  
Hannah Brown ◽  
...  

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.


2020 ◽  
Vol 16 (esp. 1) ◽  
pp. 393-408
Author(s):  
André Luiz Pereira Silva ◽  
Doralice Otaviano ◽  
Fernanda Cruz Vieira Ferreira ◽  
Jurema Valkiria Otaviano ◽  
Jussara Otaviano ◽  
...  

Suddenly in March 2020 we found ourselves confined and isolated in our homes, due to a global health crisis arising from a pandemic, caused by the contamination of a virus called COVID-19. This health crisis also generated a crisis in the social determinants of health, especially those related to the economy, education and culture. But it also generated another crisis, the psychosocial crisis, where populations affected by the effects of mental damage caused by the pandemic and isolation, showed important signs of stress. It is in this scenario that the Integrative Community Therapy, previously carried out in person, is renewed and reinvented. This article reports on the experience of implementing the Integrative Community Therapy online in Brazil and presents the results of the Afinando Vidas Pole in the contribution of improving the quality of life and the individual and collective mental health of the Brazilian population.


Author(s):  
Jennifer Raybin ◽  
Verna Hendricks-Ferguson ◽  
Paul Cook ◽  
Catherine Jankowski

Symptom distress and decreased quality of life (QOL) among children with cancer are well documented. Research is emerging on the child’s voice in QOL-symptom reports, but existing QOL questionnaires are burdensome and objective biologic markers are lacking. We examined children’s symptoms and QOL from parent and child perspectives and compared the results to one biologic marker (body posture). A cross-sectional secondary analysis of prospective data from children receiving creative arts therapy explored potential associations among demographics with and between QOL measures (PedsQL, Faces Scale, posture). Children (n = 98) ranged in age from 3-17 years (M = 7.8) and were in the first year of cancer treatment. No significant associations were found among the child’s sex, race/ethnicity, socioeconomic status (SES), or distance from hospital and total PedsQL. Older age was associated with worse total PedsQL, pain, nausea, worry, and posture (all ps < .05). Greater worry (β = 0.51) and worse posture (β = 0.41) were the QOL variables most strongly correlated with older age. Poorer posture was associated with worse child PedsQL (total score, nausea, treatment anxiety, cognitive) and parent PedsQL (pain, nausea). Worse scores on the Faces Scale, PedsQL, and posture were all correlated (rs = .21 - .39, all ps < .05). Interventions to improve QOL could target nausea, worry, and older patients. Accuracy and interpretation of symptom distress in children is problematic. The Faces Scale and posture may be suitable, readily obtained measures of QOL in pediatric oncology that hold promise.


2013 ◽  
Vol 3 (2) ◽  
pp. 136-143 ◽  
Author(s):  
Marcus A. Henning ◽  
John Sollers ◽  
Joanna M. Strom ◽  
Andrew G. Hill ◽  
Mataroria P. Lyndon ◽  
...  

2019 ◽  
Vol 14 (1) ◽  
pp. 31
Author(s):  
Fitria Handayani ◽  
Setyowati Setyowati ◽  
Dwi Pudjonarko ◽  
Dian Ratna Sawitri ◽  
Hastaning Sakti ◽  
...  

<p><span>Background </span></p><p><span>The Post Stroke Depression (PSD) prevalence of stroke survivor after three months onset was ranged from 17% to 37%. Depression led to fatigue, low quality of life, severe morbidity, and mortality.<span>  </span>Functional Outcome influence depression on stroke survivor. <span> </span>However, correlation between functional state level and depression among stroke survivor after three months onset has not been established. </span></p><p><span>Objective</span></p><p><span>This study was aimed to investigate the correlation of executive functional outcome and PSD among stroke survivor after three months onset. </span></p><p><span>Method</span></p><p><span>This study was a correlation study. The participants were 44 stroke ischemic patients after three months onset. Participants were recruited in an outpatient unit. PSD was measured using <span>The GRID-Hamilton Rating Scale for Depression 17 (GRID-HAMD 17) and </span>Functional Outcome was measured using <span>Barthel Index (BI). The reliability of GRID-HAMD 17 was .776. <span> </span>Both instruments were conducted on backward translation in to bahasa. Data was examined using </span>simple linier regression analyses. <span> </span>The ethical approval was obtained from the Ethical Research Committee of the Medical Faculty Diponegoro University and Tugurejo Semarang Hospital. </span></p><p><span>Results</span></p><p><span>The presence of PSD were 56.82. The median of HAMD-GRID-17 was 10.38 ± 7.58, and Barthel Index was 69.56 ± 21.69.<span>  </span>The Barthel Index showed positive correlation with HAMD-GRID-17 (?= -.41 ?=.006). The Functional Outcome determined PSD as much as 16.8 %. </span></p><p><span>Conclusion</span></p><p><span>Moderate association demonstrated the correlation between Functional Outcome and PSD. Nursing intervention should consider these two variables for an optimum quality of life among stroke survivors. </span></p><p> </p>


Circulation ◽  
2014 ◽  
Vol 129 (suppl_1) ◽  
Author(s):  
Ruth E Taylor-Piliae ◽  
Tiffany M Hoke ◽  
Joseph T Hepworth ◽  
L. Daniel Latt ◽  
Bijan Najafi ◽  
...  

Background: Poor physical function and quality of life are ubiquitous post-stroke. Effective interventions to improve physical function and quality of life for stroke survivors are critically needed. Objective: Examine the effect of a Tai Chi (TC) intervention on physical function and quality of life. Methods: In a single-blind randomized clinical trial community-dwelling stroke survivors, aged ≥ 50 years and ≥ 3 months post-stroke, were assigned to: Yang style 24-posture TC (n=53), SilverSneakers® (SS, n=44) strength and range of movement exercise, or Usual Care (UC, n=48) for 12 weeks. TC and SS attended a 1-hour class 3 times/week, while UC had weekly phone calls. Standardized measures for Physical Function were the Short Physical Performance Battery (SPPB), Fall Rates and 2-Minute StepTest; and for Quality of Life were the Medical Outcomes Study SF-36, Center for Epidemiological Studies Depression and Pittsburgh Sleep Quality Index. Results: A total of 145 stroke survivors (47% women, mean age=70 years, time post-stroke=3 years, ischemic stroke=66%, hemiparesis=73%) enrolled. During the intervention, TC participants had 2/3 fewer falls (n=5 falls), than the SS (n=14 falls) and UC (n=15 falls) groups (χ2=5.60, p=0.06). All groups had improvements in the SPPB score (F 1,142 =85.29, p<0.01), after the 12-week intervention. Post-hoc tests following a significant interaction for the 2-Minute StepTest (F 2,142 =4.69, p<0.01) indicated TC (t 53 =2.45, p=0.02) and SS (t 44 =4.63, p<0.01) groups had significantly better aerobic endurance over time, though the UC group did not (t 48 =1.58, p=0.12). All groups reported better perceived physical (SF-36 PCS, F 1,142 =4.15, p=0.04) and mental health (SF-36 MCS, F 1,142 =15.60, p<0.01), after the intervention. There were no significant within group changes in perceived physical health (p>0.05), while significant improvements in perceived mental health (p < 0.05) were observed within all groups. No significant changes in depressive symptoms or sleep quality were observed (p>0.05). Attrition was 10% (n=14), and intervention adherence rates were 85%. Conclusions: Goals of stroke rehabilitation are to prevent disability, improve physical function and quality of life. TC and SS led to improved aerobic endurance, and both are suitable community-based programs that may aid in stroke recovery and community reintegration. Our data suggest that a 12-week TC intervention may be more effective in reducing fall rates than SS or UC. Future studies examining the effectiveness of TC to reduce fall rates; and improve physical function and quality of life for community-dwelling stroke survivors are recommended.


Stroke ◽  
2017 ◽  
Vol 48 (suppl_1) ◽  
Author(s):  
David L Roth ◽  
Orla C Sheehan ◽  
Jin Huang ◽  
J. D Rhodes ◽  
Suzanne E Judd ◽  
...  

Background: Multiple previous investigations have documented persistent elevations in depressive symptoms after stroke for stroke survivors and for family caregivers. However, relatively few studies have examined both groups simultaneously, and none have tested for possible predictive linkages in longitudinal analyses. Methods: We collected interview data from 248 stroke survivors and their primary family caregivers who were enrolled in the Caring for Adults Recovering from the Effects of Stroke (CARES) project. CARES is an ancillary study to the national REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Stroke survivors and caregivers were interviewed at 9-, 18-, 27- and 36-months after an adjudicated stroke event. Measures administered to both groups included the 20-item Center for Epidemiological Studies Depression Scale (CESD) and the 12-item Short Form Health Survey (SF-12) of health-related quality of life. Cross-lagged panel analyses were used to investigate linkages between stroke survivors and caregivers over time on these measures. Results: Clinically significant levels of depressive symptoms, as defined by a score of 16 or more on the CESD, were found for 17.0% of the stroke survivors and 13.7% of the caregivers at 9-months after stroke. Longitudinal models revealed that high stroke survivor depressive symptoms at 9-months post-stroke predicted increases in caregiver depressive symptoms at 18-months post-stroke (standardized adjusted regression coefficient = 0.18, p = 0.003). No longitudinal predictive effects were found for caregiver depressive symptoms on stroke survivor outcomes or for the SF-12 measures. Conclusions: Clinically significant levels of depressive symptoms were relatively rare 9-months after stroke in this population-based sample of stroke survivors and family caregivers. Stroke survivor depressive symptoms longitudinally predict caregiver depressive symptoms, but caregiver well-being was not found to longitudinally predict stroke survivor depression or quality of life. Treating elevated depressive symptoms in stroke survivors may also improve caregiver well-being.


2018 ◽  
Vol 2018 ◽  
pp. 1-8 ◽  
Author(s):  
Theresa M. Smith ◽  
Monique R. Pappadis ◽  
Shilpa Krishnan ◽  
Timothy A. Reistetter

Approximately 800,000 people in the United States have a stroke annually. Up to two thirds of stroke survivors have some visual problems, which result in disability and can affect survivors’ overall rehabilitation outcomes. Although some post-stroke visual impairments can be corrected and respond well to intervention, ocular signs can be subtle and may not be recognized or reported by the stroke survivor but rather by a vigilant caregiver. The purpose of this study was to explore the post-stroke visual concerns and consequences expressed by stroke survivors and caregivers. This study employed a qualitative design using semistructured interviews conducted with a convenience sample of stroke survivors and caregivers recruited from either a community support group or skilled nursing and long-term care facilities. Interviews were recorded and transcribed verbatim. Comparative content analysis was used to identify vision-related themes by two independent coders. All research team members completed quality checking of coding. Twenty participants (11 stroke survivors and 9 caregivers) expressed visual concerns or consequences following stroke: (1) eye movement problems, (2) perceptual issues, and (3) consequences of vision problems or issues, which affected their daily life/quality of life. Stroke survivors and caregivers reported receiving vision care from (1) eye doctors, (2) occupational therapists, and (3) other healthcare professionals. All vision care providers need to be observant of potential post-stroke visual concerns. Stroke survivors should have a thorough vision evaluation to optimize their independence in everyday activities and quality of life.


Sign in / Sign up

Export Citation Format

Share Document