Browsing by Subject "Survivors"
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Item Open Access Association of anemia and long-term survival in patients with pulmonary hypertension.(Int J Cardiol, 2011-08-04) Krasuski, Richard A; Hart, Stephen A; Smith, Brad; Wang, Andrew; Harrison, J Kevin; Bashore, Thomas MBACKGROUND: Anemia is a marker of worsened clinical outcome in patients with heart failure from left ventricular dysfunction. Pulmonary hypertension often results in right ventricular dysfunction. Accordingly we sought to examine the association of hemoglobin levels and long-term all-cause mortality in a cohort of patients with pulmonary hypertension. METHODS: Baseline demographic information, clinical characteristics and fasting blood work were obtained in a cohort of 145 patients with pulmonary hypertension referred for pulmonary vasodilator testing. Data was retrospectively analyzed with Cox-proportional hazards analysis. RESULTS: Baseline characteristics of the cohort included age (mean±SD) 55.8±14.6 years, 75% women, 50% with idiopathic pulmonary hypertension, mean pulmonary artery pressure 46.1±14.2 mm Hg and arterial O(2) saturation 91±6 %. The most commonly utilized pulmonary hypertension specific therapeutic agents in descending order of frequency were epoprostenol (27%), sildenafil (21%), bosentan (17%), and treprostinil (6%). Over a median follow-up of 2.1 years, there were 39 deaths (26.9%). Patients who died had significantly lower hemoglobin levels than those survived (12.2±2.3 vs. 13.7±2.0, p<0.001). After adjustment for known predictors of death and pulmonary hypertension etiology, anemic patients were 3.3 times more likely to die than non-anemic patients (95% CI [1.43-7.51], p=0.005). CONCLUSIONS: Hemoglobin levels closely parallel survival in pulmonary hypertension. Modification of anemia in this disorder could alter the clinical course and calls for further research in this area.Item Open Access Can acute clinical outcomes predict health-related quality of life after stroke: a one-year prospective study of stroke survivors.(Health and quality of life outcomes, 2018-11-21) Yeoh, Yen Shing; Koh, Gerald Choon-Huat; Tan, Chuen Seng; Lee, Kim En; Tu, Tian Ming; Singh, Rajinder; Chang, Hui Meng; De Silva, Deidre A; Ng, Yee Sien; Ang, Yan Hoon; Yap, Philip; Chew, Effie; Merchant, Reshma Aziz; Yeo, Tseng Tsai; Chou, Ning; Venketasubramanian, N; Young, Sherry H; Hoenig, Helen; Matchar, David Bruce; Luo, NanBackground
Health-related quality of life (HRQoL) is a key metric to understand the impact of stroke from patients' perspective. Yet HRQoL is not readily measured in clinical practice. This study aims to investigate the extent to which clinical outcomes during admission predict HRQoL at 3 months and 1 year post-stroke.Methods
Stroke patients admitted to five tertiary hospitals in Singapore were assessed with Shah-modified Barthel Index (Shah-mBI), National Institute of Health Stroke Scale (NIHSS), Modified Rankin Scale (mRS), Mini-Mental State Examination (MMSE), and Frontal Assessment Battery (FAB) before discharge, and the EQ-5D questionnaire at 3 months and 12 months post-stroke. Association of clinical measures with the EQ index at both time points was examined using multiple linear regression models. Forward stepwise selection was applied and consistently significant clinical measures were analyzed for their association with individual dimensions of EQ-5D in multiple logistic regressions.Results
All five clinical measures at baseline were significant predictors of the EQ index at 3 months and 12 months, except that MMSE was not significantly associated with the EQ index at 12 months. NIHSS (3-month standardized β = - 0.111; 12-month standardized β = - 0.109) and mRS (3-month standardized β = - 0.122; 12-month standardized β = - 0.080) were shown to have a larger effect size than other measures. The contribution of NIHSS and mRS as significant predictors of HRQoL was mostly explained by their association with the mobility, self-care, and usual activities dimensions of EQ-5D.Conclusions
HRQoL at 3 months and 12 months post-stroke can be predicted by clinical outcomes in the acute phase. NIHSS and mRS are better predictors than BI, MMSE, and FAB.Item Open Access Can caregivers report their care recipients' post-stroke hospitalizations and outpatient visits accurately? Findings of an Asian prospective stroke cohort.(BMC health services research, 2018-10-25) Tyagi, Shilpa; Koh, Gerald Choon-Huat; Luo, Nan; Tan, Kelvin Bryan; Hoenig, Helen; Matchar, David B; Yoong, Joanne; Finkelstein, Eric A; Lee, Kim En; Venketasubramanian, N; Menon, Edward; Chan, Kin Ming; De Silva, Deidre Anne; Yap, Philip; Tan, Boon Yeow; Chew, Effie; Young, Sherry H; Ng, Yee Sien; Tu, Tian Ming; Ang, Yan Hoon; Kong, Keng He; Singh, Rajinder; Merchant, Reshma A; Chang, Hui Meng; Yeo, Tseng Tsai; Ning, Chou; Cheong, Angela; Ng, Yu Li; Tan, Chuen SengBackground
Health services research aimed at understanding service use and improving resource allocation often relies on collecting subjectively reported or proxy-reported healthcare service utilization (HSU) data. It is important to know the discrepancies in such self or proxy reports, as they have significant financial and policy implications. In high-dependency populations, such as stroke survivors, with varying levels of cognitive impairment and dysphasia, caregivers are often potential sources of stroke survivors' HSU information. Most of the work conducted on agreement analysis to date has focused on validating different sources of self-reported data, with few studies exploring the validity of caregiver-reported data. Addressing this gap, our study aimed to quantify the agreement across the caregiver-reported and national claims-based HSU of stroke patients.Methods
A prospective study comprising multi-ethnic stroke patient and caregiver dyads (N = 485) in Singapore was the basis of the current analysis, which used linked national claims records. Caregiver-reported health services data were collected via face-to-face and telephone interviews, and similar health services data were extracted from the national claims records. The main outcome variable was the modified intraclass correlation coefficient (ICC), which provided the level of agreement across both data sources. We further identified the amount of over- or under-reporting by caregivers across different service types.Results
We observed variations in agreement for different health services, with agreement across caregiver reports and national claims records being the highest for outpatient visits (specialist and primary care), followed by hospitalizations and emergency department visits. Interestingly, caregivers over-reported hospitalizations by approximately 49% and under-reported specialist and primary care visits by approximately 20 to 30%.Conclusions
The accuracy of the caregiver-reported HSU of stroke patients varies across different service types. Relatively more objective data sources, such as national claims records, should be considered as a first choice for quantifying health care usage before considering caregiver-reported usage. Caregiver-reported outpatient service use was relatively more accurate than inpatient service use over shorter recall periods. Therefore, in situations where objective data sources are limited, caregiver-reported outpatient information can be considered for low volumes of healthcare consumption, using an appropriate correction to account for potential under-reporting.Item Open Access Caring for Alaska Native prostate cancer survivors in primary care: a survey of Alaska Tribal Health System providers.(Int J Circumpolar Health, 2014) Tilburt, Jon C; Kelley, Stacy; DeCourtney, Christine A; Humeniuk, Katherine M; Latini, Jerilyn; Kim, Simon PBACKGROUND: Little is known about the constraints of optimizing health care for prostate cancer survivors in Alaska primary care. OBJECTIVE: To describe the experiences and attitudes of primary care providers within the Alaska Tribal Health System (ATHS) regarding the care of prostate cancer survivors. DESIGN: In late October 2011, we emailed a 22-item electronic survey to 268 ATHS primary care providers regarding the frequency of Prostate Specific Antigen (PSA) monitoring for a hypothetical prostate cancer survivor; who should be responsible for the patient's life-long prostate cancer surveillance; who should support the patient's emotional and medical needs as a survivor; and providers' level of comfort addressing recurrence monitoring, erectile dysfunction, urinary incontinence, androgen deprivation therapy, and emotional needs. We used simple logistic regression to examine the association between provider characteristics and their responses to the survivorship survey items. RESULTS: Of 221 individuals who were successfully contacted, a total of 114 responded (52% response rate). Most ATHS providers indicated they would order a PSA test every 12 months (69%) and believed that, ideally, the hypothetical patient's primary care provider should be responsible for his life-long prostate cancer surveillance (60%). Most providers reported feeling either "moderately" or "very" comfortable addressing topics such as prostate cancer recurrence (59%), erectile dysfunction (64%), urinary incontinence (63%), and emotional needs (61%) with prostate cancer survivors. These results varied somewhat by provider characteristics including female sex, years in practice, and the number of prostate cancer survivors seen in their practice. CONCLUSIONS: These data suggest that most primary care providers in Alaska are poised to assume the care of prostate cancer survivors locally. However, we also found that large minorities of providers do not feel confident in their ability to manage common issues in prostate cancer survivorship, implying that continued access to specialists with more expert knowledge would be beneficial.Item Open Access Coronary Disease and Modifying Cardiovascular Risk in Adult Congenital Heart Disease Patients: Should General Guidelines Apply?(Progress in cardiovascular diseases, 2018-09) Awerbach, Jordan D; Krasuski, Richard A; Camitta, Michael GWThere are >1.4 million adult congenital heart disease (CHD; ACHD) patients living in the United States. Coronary artery disease (CAD) is at least as prevalent in ACHD patients as in the general population and has become a leading cause of their mortality. In the majority of cases, CAD in the ACHD population is driven by the presence of traditional cardiovascular disease (CVD) risk factors. 80% of ACHD patients have at least one CVD risk factor. Hypertension (HTN), obesity and physical inactivity are frequently seen in both pediatric and adult patients with CHD. Many ACHD patients demonstrate abnormal glucose metabolism and are at an increased risk for developing diabetes. Current guidelines for CVD risk assessment and prevention do not specifically mention patients with CHD but are likely applicable to most of these patients. Specific CHD populations have "high-risk" lesions that are associated with an increased risk of CVD complications and may warrant intensified screening and treatment. These include patients with a history of coarctation of the aorta or with prior coronary artery ostial manipulation (patients with a history of d-transposition of the great arteries or anomalous aortic origin of a coronary artery). The physiology of single ventricle patients is also poorly suited for the effects of superimposed CVD; these patients may benefit from intensified treatment of CVD risk factors, particularly HTN and obesity.Item Open Access Design of the North Carolina Prostate Cancer Comparative Effectiveness and Survivorship Study (NC ProCESS).(Journal of comparative effectiveness research, 2015-01) Chen, Ronald C; Carpenter, William R; Kim, Mimi; Hendrix, Laura H; Agans, Robert P; Meyer, Anne-Marie; Hoffmeyer, Anna; Reeve, Bryce B; Nielsen, Matthew E; Usinger, Deborah S; Strigo, Tara S; Jackman, Anne M; Anderson, Mary; Godley, Paul AThe North Carolina Prostate Cancer Comparative Effectiveness & Survivorship Study (NC ProCESS) was designed in collaboration with stakeholders to compare the effectiveness of different treatment options for localized prostate cancer. Using the Rapid Case Ascertainment system of the North Carolina Central Cancer Registry, 1,419 patients (57% of eligible) with newly-diagnosed localized prostate cancer were enrolled from January 2011 to June 2013, on average 5 weeks after diagnosis. All participants were enrolled prior to treatment and this population-based cohort is sociodemographically diverse. Prospective follow-up continues to collect data on treatments received, disease control, survival and patient-reported outcomes. This study highlights several important considerations regarding stakeholder involvement, study design and generalizability regarding comparative effectiveness research in prostate cancer.Item Open Access Expression signatures of TP53 mutations in serous ovarian cancers.(BMC Cancer, 2010-05-26) Bernardini, Marcus Q; Baba, Tsukasa; Lee, Paula S; Barnett, Jason C; Sfakianos, Gregory P; Secord, Angeles Alvarez; Murphy, Susan K; Iversen, Edwin; Marks, Jeffrey R; Berchuck, AndrewBACKGROUND: Mutations in the TP53 gene are extremely common and occur very early in the progression of serous ovarian cancers. Gene expression patterns that relate to mutational status may provide insight into the etiology and biology of the disease. METHODS: The TP53 coding region was sequenced in 89 frozen serous ovarian cancers, 40 early stage (I/II) and 49 advanced stage (III/IV). Affymetrix U133A expression data was used to define gene expression patterns by mutation, type of mutation, and cancer stage. RESULTS: Missense or chain terminating (null) mutations in TP53 were found in 59/89 (66%) ovarian cancers. Early stage cancers had a significantly higher rate of null mutations than late stage disease (38% vs. 8%, p < 0.03). In advanced stage cases, mutations were more prevalent in short term survivors than long term survivors (81% vs. 30%, p = 0.0004). Gene expression patterns had a robust ability to predict TP53 status within training data. By using early versus late stage disease for out of sample predictions, the signature derived from early stage cancers could accurately (86%) predict mutation status of late stage cancers. CONCLUSIONS: This represents the first attempt to define a genomic signature of TP53 mutation in ovarian cancer. Patterns of gene expression characteristic of TP53 mutation could be discerned and included several genes that are known p53 targets or have been described in the context of expression signatures of TP53 mutation in breast cancer.Item Open Access From Community Laywomen to Breast Health Workers: A Pilot Training Model to Implement Clinical Breast Exam Screening in Malawi.(PloS one, 2016-01) Gutnik, Lily; Moses, Agnes; Stanley, Christopher; Tembo, Tapiwa; Lee, Clara; Gopal, SatishBACKGROUND:Breast cancer burden is high in low-income countries. Inadequate early detection contributes to late diagnosis and increased mortality. We describe the training program for Malawi's first clinical breast exam (CBE) screening effort. METHODS:Laywomen were recruited as Breast Health Workers (BHWs) with the help of local staff and breast cancer advocates. The four-week training consisted of lectures, online modules, role-playing, case discussions, CBE using simulators and patients, and practice presentations. Ministry of Health trainers taught health communication, promotion, and education skills. Breast cancer survivors shared their experiences. Clinicians taught breast cancer epidemiology, prevention, detection, and clinical care. Clinicians and research staff taught research ethics, informed consent, data collection, and professionalism. Breast cancer knowledge was measured using pre- and post-training surveys. Concordance between BHW and clinician CBE was assessed. Breast cancer talks by BHW were evaluated on a 5-point scale in 22 areas by 3 judges. RESULTS:We interviewed 12 women, and 4 were selected as BHWs including 1 breast cancer survivor. Training was dynamic with modification based on trainee response and progress. A higher-than-anticipated level of comprehension and interest led to inclusion of additional topics like breast reconstruction. Pre-training knowledge increased from 49% to 91% correct (p<0.0001). Clinician and BHW CBE had 88% concordance (kappa 0.43). The mean rating of BHW educational talks was 4.4 (standard deviation 0.7). CONCLUSIONS:Malawian laywomen successfully completed training and demonstrated competency to conduct CBE and deliver breast cancer educational talks. Knowledge increased after training, and concordance was high between BHW and clinician CBE.Item Open Access Health-related quality of life loss associated with first-time stroke.(PloS one, 2019-01-28) Yeoh, Yen Shing; Koh, Gerald Choon-Huat; Tan, Chuen Seng; Tu, Tian Ming; Singh, Rajinder; Chang, Hui Meng; De Silva, Deidre A; Ng, Yee Sien; Ang, Yan Hoon; Yap, Philip; Chew, Effie; Merchant, Reshma A; Yeo, Tseng Tsai; Chou, Ning; Venketasubramanian, N; Lee, Kim En; Young, Sherry H; Hoenig, Helen; Matchar, David Bruce; Luo, NanOBJECTIVES:This study aimed to quantify health-related quality of life (HRQoL) loss associated with first episode of stroke by comparing patient-reported HRQoL before and after stroke onset. The impact of stroke in local population was also evaluated by comparing the pre- and post-stroke HRQoL with that of the general population. METHODS:The HRQoL of stroke survivors was assessed with the EQ-5D-3L index score at recruitment, for recalled pre-stroke HRQoL, and at 3 and 12 month post-stroke. Change in HRQoL from pre-stroke to 3 and 12 month was self-reported by 285 and 238 patients, respectively. Mean EQ index score at each time point (baseline: 464 patients; 3 month post-stroke: 306 patients; 12 month post-stroke: 258 patients) was compared with published population norms for EQ-5D-3L. RESULTS:There was a significant decrease in HRQoL at 3 (0.25) and 12 month (0.09) post-stroke when compared to the retrospectively recalled patients' mean pre-stroke HRQoL level (0.87). The reduction at 3 month was associated with the reduction in all EQ-5D-3L health dimensions; reductions remaining at 12 month were limited to dimensions of mobility, self-care, usual activities, and anxiety/depression. Stroke patients had a lower mean EQ index than the general population by 0.07 points pre-stroke (0.87 vs. 0.94), 0.33 points at 3 month (0.61 vs. 0.94) and 0.18 points at 12 month (0.76 vs. 0.94) post-stroke. CONCLUSIONS:Stroke has a substantial impact on HRQoL in Singapore, especially in the first three months post-stroke. Compared to the general population, stroke survivors have lower HRQoL even before stroke onset. This pre-stroke deficit in HRQoL should be taken into account when quantifying health burden of stroke or setting goals for stroke rehabilitation.Item Open Access Importance and Challenges of Moving Stroke Prevention into the Community.(Circulation. Cardiovascular quality and outcomes, 2018-01) Zullig, Leah L; Bosworth, Hayden BItem Open Access Lessons from the 2015 earthquake(s) in Nepal: implication for rehabilitation.(Disabil Rehabil, 2016) Sheppard, Phillip S; Landry, Michel DPURPOSE: There has been an increase in the number of natural disasters in recent history, and the rate of disability is increasing among survivors. The most recent major natural disaster was the earthquake(s) that occurred in Nepal on 25 April 2015 and 12 May 2015. In total, more than 8500 people were killed and over 18,500 people were left injured. This article aims to demonstrate the role of rehabilitation professionals in post-disaster relief and beyond in Nepal. METHOD: This is an experiential account of physiotherapists present during the earthquake and participating in the post-disaster relief. RESULTS: Rehabilitation professionals played an important role in the acute phase post-disaster by providing essential services and equipment. However, discharge planning emerged as an important role for rehabilitation providers in the early days of post-disaster and signaled a relatively new and innovative function that facilitated the heavy imbalance between little supply and tremendous demand for care. In the coming years, rehabilitation will need to support local initiatives that focus on minimizing the long-term effects among people with a newly acquired disability. CONCLUSIONS: Rehabilitation serves an important role across the continuum in post-disaster relief from the initial stages to the months and years following an event. IMPLICATIONS FOR REHABILITATION: Driven by medical advances in acute field medicine, the relative proportion of casualties following natural disasters is decreasing, while relative rates of disability are rising among survivors. In post-disaster settings, the growing number of people with newly acquired disabilities will be added to the existing proportion of the population who lived with disabilities, creating a significant growth in the total number of people with disabilities (PWDs) in communities that are often ill prepared to provide necessary services. Rehabilitation interventions in the initial stages of emergency humanitarian response can minimize the long-term effects among people with newly acquired disabilities through early activation and prevention of secondary effects. Rehabilitation providers thus appear to have an important mediating effect on outcomes of disabilities in the early stages, but must also be strong partners with PWDs to advocate for social and political change in the long term.Item Open Access One-year and three-year mortality prediction in adult major blunt trauma survivors: a National Retrospective Cohort Analysis.(Scandinavian journal of trauma, resuscitation and emergency medicine, 2018-04-18) Wong, Ting Hway; Nadkarni, Nivedita Vikas; Nguyen, Hai V; Lim, Gek Hsiang; Matchar, David Bruce; Seow, Dennis Chuen Chai; King, Nicolas KK; Ong, Marcus Eng HockSurvivors of trauma are at increased risk of dying after discharge. Studies have found that age, head injury, injury severity, falls and co-morbidities predict long-term mortality. The objective of our study was to build a nomogram predictor of 1-year and 3-year mortality for major blunt trauma adult survivors of the index hospitalization.Using data from the Singapore National Trauma Registry, 2011-2013, we analyzed adults aged 18 and over, admitted after blunt injury, with an injury severity score (ISS) of 12 or more, who survived the index hospitalization, linked to death registry data. The study population was randomly divided 60/40 into separate construction and validation datasets, with the model built in the construction dataset, then tested in the validation dataset. Multivariable logistic regression was used to analyze 1-year and 3-year mortality.Of the 3414 blunt trauma survivors, 247 (7.2%) died within 1 year, and 551 (16.1%) died within 3 years of injury. Age (OR 1.06, 95% CI 1.05-1.07, p < 0.001), male gender (OR 1.53, 95% CI 1.12-2.10, p < 0.01), low fall from 0.5 m or less (OR 3.48, 95% CI 2.06-5.87, p < 0.001), Charlson comorbidity index of 2 or more (OR 2.26, 95% CI 1.38-3.70, p < 0.01), diabetes (OR 1.31, 95% CI 1.68-2.52, p = 0.04), cancer (OR 1.76, 95% CI 0.94-3.32, p = 0.08), head and neck AIS 3 or more (OR 1.79, 95% CI 1.13-2.84, p = 0.01), length of hospitalization of 30 days or more (OR 1.99, 95% CI 1.02-3.86, p = 0.04) were predictors of 1-year mortality. This model had a c-statistic of 0.85. Similar factors were found significant for the model predictor of 3-year mortality, which had a c-statistic of 0.83. Both models were validated on the second dataset, with an overall accuracy of 0.94 and 0.84 for 1-year and 3-year mortality respectively.Adult survivors of major blunt trauma can be risk-stratified at discharge for long-term support.Item Open Access Short-Term Trajectories of Depressive Symptoms in Stroke Survivors and Their Family Caregivers.(Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association, 2016-01) Malhotra, Rahul; Chei, Choy-Lye; Menon, Edward; Chow, Wai Leng; Quah, Stella; Chan, Angelique; Matchar, David BruceGoal
We utilize group-based trajectory modeling (GBTM) to delineate depressive symptom trajectories among stroke survivor-caregiver dyads, to identify predictors of the delineated trajectories, and to assess the influence of time-varying covariates (stroke survivor depressive symptoms and functional disability, caregiver depressive symptoms, and foreign domestic worker [FDW] assistance) on the level of the depressive symptom trajectories.Methods
Data on 172 stroke survivor-caregiver dyads in Singapore, for whom depressive symptoms were assessed thrice (baseline/3 months/6 months), were utilized. GBTM was applied to delineate depressive symptom trajectories, and to identify their predictors and time-varying covariates.Findings
Three stroke survivor depressive symptom trajectories (low and decreasing [47.6%], low and increasing [43.1%], and high and increasing [9.3%]) and 2 caregiver depressive symptom trajectories (low and stable [71.5%] and high and decreasing [28.5%]) were delineated. Caregivers with chronic diseases were more likely (odds ratio [95% confidence interval]: 8.09[2.04-32.07]) and those caring for older stroke survivors (0.94[0.90-0.98]) were less likely to follow the high and decreasing than the low and stable depressive symptom trajectory. An increase in stroke survivor functional disability and caregiver depressive symptoms led to a rise (~worsening) in stroke survivor depressive symptom trajectories. Whereas an increase in stroke survivor depressive symptoms led to a rise in caregiver depressive symptom trajectories, FDW assistance led to a decline (~improvement).Conclusion
Care professionals should be mindful of heterogeneity in depressive symptom patterns over time among stroke survivor-caregiver dyads. Reciprocal association of depressive symptoms in the stroke survivor-caregiver dyad suggests that addressing mood problems in 1 member may benefit the other member, and calls for dyadic mental health interventions.Item Open Access The association between socioeconomic status and disability after stroke: findings from the Adherence eValuation After Ischemic stroke Longitudinal (AVAIL) registry.(BMC Public Health, 2014-03-26) Bettger, Janet Prvu; Zhao, Xin; Bushnell, Cheryl; Zimmer, Louise; Pan, Wenqin; Williams, Linda S; Peterson, Eric DBACKGROUND: Stroke is the leading cause of disability among adults in the United States. The association of patients' pre-event socioeconomic status (SES) with post-stroke disability is not well understood. We examined the association of three indicators of SES--educational attainment, working status, and perceived adequacy of household income--with disability 3-months following an acute ischemic stroke. METHODS: We conducted retrospective analyses of a prospective cohort of 1965 ischemic stroke patients who survived to 3 months in the Adherence eValuation After Ischemic stroke--Longitudinal (AVAIL) study. Multivariable logistic regression was used to examine the relationship of level of education, pre-stroke work status, and perceived adequacy of household income with disability (defined as a modified Rankin Scale of 3-5 indicating activities of daily living limitations or constant care required). RESULTS: Overall, 58% of AVAIL stroke patients had a high school or less education, 61% were not working, and 27% perceived their household income as inadequate prior to their stroke. Thirty five percent of patients were disabled at 3-months. After adjusting for demographic and clinical factors, stroke survivors who were unemployed or homemakers, disabled and not-working, retired, less educated, or reported to have inadequate income prior to their stroke had a significantly higher odds of post-stroke disability. CONCLUSIONS: In this cohort of stroke survivors, socioeconomic status was associated with disability following acute ischemic stroke. The results may have implications for public health and health service interventions targeting stroke survivors at risk of poor outcomes.Item Open Access The emerging phenotype of long-term survivors with infantile Pompe disease.(Genetics in medicine : official journal of the American College of Medical Genetics, 2012-09) Prater, Sean N; Banugaria, Suhrad G; DeArmey, Stephanie M; Botha, Eleanor G; Stege, Erin M; Case, Laura E; Jones, Harrison N; Phornphutkul, Chanika; Wang, Raymond Y; Young, Sarah P; Kishnani, Priya SPurpose
Enzyme replacement therapy with alglucosidase alfa for infantile Pompe disease has improved survival creating new management challenges. We describe an emerging phenotype in a retrospective review of long-term survivors.Methods
Inclusion criteria included ventilator-free status and age ≤6 months at treatment initiation, and survival to age ≥5 years. Clinical outcome measures included invasive ventilator-free survival and parameters for cardiac, pulmonary, musculoskeletal, gross motor, and ambulatory status; growth; speech, hearing, and swallowing; and gastrointestinal and nutritional status.Results
Eleven of 17 patients met study criteria. All were cross-reactive immunologic material-positive, alive, and invasive ventilator-free at most recent assessment, with a median age of 8.0 years (range: 5.4-12.0 years). All had marked improvements in cardiac parameters. Commonly present were gross motor weakness, motor speech deficits, sensorineural and/or conductive hearing loss, osteopenia, gastroesophageal reflux, and dysphagia with aspiration risk. Seven of 11 patients were independently ambulatory and four required the use of assistive ambulatory devices. All long-term survivors had low or undetectable anti-alglucosidase alfa antibody titers.Conclusion
Long-term survivors exhibited sustained improvements in cardiac parameters and gross motor function. Residual muscle weakness, hearing loss, risk for arrhythmias, hypernasal speech, dysphagia with risk for aspiration, and osteopenia were commonly observed findings.Item Open Access Trajectories of positive aspects of caregiving among family caregivers of stroke-survivors: the differential impact of stroke-survivor disability.(Topics in stroke rehabilitation, 2018-05) Malhotra, Rahul; Chei, Choy-Lye; Menon, Edward Balan; Chow, Wai-Leng; Quah, Stella; Chan, Angelique; Ajay, Shweta; Matchar, David BruceObjective To delineate positive aspects of caregiving trajectories among family caregivers of stroke-survivors and determine the impact of stroke-survivor disability, a time-varying factor, on the delineated trajectories. Methods In a longitudinal study, family caregivers of 173 stroke-survivors in Singapore were administered the Positive Aspects of Caregiving scale (PAC scale) thrice (baseline/3 months/6 months). Group-based trajectory modeling delineated positive aspects of caregiving trajectories and identified the impact of stroke-survivor disability on the trajectories. Results Two distinct positive aspects of caregiving trajectories, Persistently Low and Persistently High were delineated. Increase in stroke-survivor disability was associated with a significant downward shift (reduction in positive aspects of caregiving) of the Persistently Low trajectory and a significant upward shift (increase in positive aspects of caregiving) of the Persistently High trajectory. Older caregivers were more likely to follow the Persistently High trajectory. Conclusions Care professionals should be mindful of the heterogeneity in the longitudinal pattern of positive feelings resulting from care provision among family caregivers of stroke-survivors, and the differential impact of stroke-survivor disability on the pattern of positive feelings. Younger caregivers as well as family caregivers who have low positive feelings at the start of their caregiver journey and experience worsening functional disability of their care recipient (stroke-survivor) require greater attention and support.Item Open Access Variation in use of surveillance colonoscopy among colorectal cancer survivors in the United States.(BMC Health Serv Res, 2010-09-01) Salz, Talya; Weinberger, Morris; Ayanian, John Z; Brewer, Noel T; Earle, Craig C; Elston Lafata, Jennifer; Fisher, Deborah A; Weiner, Bryan J; Sandler, Robert SBACKGROUND: Clinical practice guidelines recommend colonoscopies at regular intervals for colorectal cancer (CRC) survivors. Using data from a large, multi-regional, population-based cohort, we describe the rate of surveillance colonoscopy and its association with geographic, sociodemographic, clinical, and health services characteristics. METHODS: We studied CRC survivors enrolled in the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Eligible survivors were diagnosed between 2003 and 2005, had curative surgery for CRC, and were alive without recurrences 14 months after surgery with curative intent. Data came from patient interviews and medical record abstraction. We used a multivariate logit model to identify predictors of colonoscopy use. RESULTS: Despite guidelines recommending surveillance, only 49% of the 1423 eligible survivors received a colonoscopy within 14 months after surgery. We observed large regional differences (38% to 57%) across regions. Survivors who received screening colonoscopy were more likely to: have colon cancer than rectal cancer (OR = 1.41, 95% CI: 1.05-1.90); have visited a primary care physician (OR = 1.44, 95% CI: 1.14-1.82); and received adjuvant chemotherapy (OR = 1.75, 95% CI: 1.27-2.41). Compared to survivors with no comorbidities, survivors with moderate or severe comorbidities were less likely to receive surveillance colonoscopy (OR = 0.69, 95% CI: 0.49-0.98 and OR = 0.44, 95% CI: 0.29-0.66, respectively). CONCLUSIONS: Despite guidelines, more than half of CRC survivors did not receive surveillance colonoscopy within 14 months of surgery, with substantial variation by site of care. The association of primary care visits and adjuvant chemotherapy use suggests that access to care following surgery affects cancer surveillance.