scholarly journals Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study

2015 ◽  
Vol 10 (1) ◽  
Author(s):  
Marleen R. van Walsem ◽  
Emilie I. Howe ◽  
Kristin Iversen ◽  
Jan C. Frich ◽  
Nada Andelic
2021 ◽  
pp. 1-9
Author(s):  
Natalie Gavrielov-Yusim ◽  
Yael Barer ◽  
Michael Martinec ◽  
Athanasios Siadimas ◽  
Spyros Roumpanis ◽  
...  

Background: Huntington’s disease (HD) is a rare, genetic, neurodegenerative disease. Obtaining population-level data on epidemiology and disease management is challenging. Objective: To investigate the epidemiology, clinical manifestations, treatment, and healthcare utilization of patients with HD in Israel. Methods: Retrospective population-based cohort study, including 20 years of routinely collected data from Maccabi Healthcare Services, an insurer and healthcare provider for one-quarter of the Israeli population. Results: The study cohort included 109 adult patients (aged ≥18 years) diagnosed with HD, with mean age of 49.9 years and 56%females. The most common HD-related conditions were anxiety (40%), behavioral problems (34%), sleep disorders (21%), and falls (13%). Annual incidence rates for HD ranged from 0.17 to 1.34 per 100,000 from 2000 to 2018; the 2018 crude prevalence in adults was 4.36 per 100,000. Median survival from diagnosis was approximately 12 years (95%CI: 10.4–15.3). The most frequent symptomatic treatments were antidepressants (69%), antipsychotics (63%), and tetrabenazine (63%), the only drug approved for the treatment of HD chorea in Israel during the examined period. Patterns of healthcare utilization changed as disease duration increased, reflected by increased frequency of emergency department visits and home visits. Conclusion: This retrospective population-based study provides insights into the prevalence, incidence, clinical profile, survival, and resource utilization of patients with HD in ethnically diverse Israel. The findings in this study are generally consistent with the international literature and demonstrate the value of routinely collected healthcare data as a complementary resource in HD research.


2014 ◽  
Vol 7 (4) ◽  
pp. 139-148
Author(s):  
John Hunninghake ◽  
Fanglong Dong ◽  
Robert B Hines ◽  
Elizabeth Ablah ◽  
Sarah Taylor

Background. The purpose of this study was to quantify the prevalence of cancer patients utilizing social support services while undergoing treatment and to identify patient and clinical factors associated with utilization of such services. Methods. This was a cross-sectional study. Surveys were distributed to three cancer clinics at 11 locations in the greater Kansas City metropolitan area in 2010. Study inclusion criteria included being at least 18 years old and undergoing treatment for cancer at the time of survey completion. Results. A total of 465 oncology patients completed surveys. Two-thirds (67.5%, n = 314) were undergoing treatment for cancer and were included in the final analysis. More than half (63.7%, n = 198) were female, and the average age was 58.9 ± 13.3 years. More than one-third (37.4%, n = 117) reported using cancer-related social support services. Additionally, 22% (n = 69) reported not using support services but were interested in learning more about those services. Patients had increased odds of having used support services if they were female (OR = 2.67; 95% CI = 1.47, 4.82), were younger adults, or had stage I-III (OR = 2.67; 95% CI 1.32, 5.26) or stage IV cancer (OR = 2.3; 95% CI 1.14, 4.75) compared to those who did not know their cancer stage. Conclusions. More than one-third of patients reported using social support services. A substantial portion of participants reported not using support services but were interested in learning more about those services. Increasing social support service utilization might be especially important to explore for men, those who do not know their cancer stage, and older adults.


2013 ◽  
Vol 21 (9) ◽  
pp. 2509-2520 ◽  
Author(s):  
P. N. Butow ◽  
◽  
M. L. Bell ◽  
L. J. Aldridge ◽  
M. Sze ◽  
...  

2007 ◽  
Vol 92 (3) ◽  
pp. 841-845 ◽  
Author(s):  
Bjørn O. Åsvold ◽  
Trine Bjøro ◽  
Tom I. L. Nilsen ◽  
Lars J. Vatten

Abstract Context: The association between thyroid function and blood pressure is insufficiently studied. Objective: The objective of the investigation was to study the association between TSH within the reference range and blood pressure. Design and Setting: This was a cross-sectional, population-based study. Subjects: A total of 30,728 individuals without previously known thyroid disease were studied. Main Outcome Measures: The main outcome measures were mean systolic and diastolic blood pressure and pulse pressure and odds ratio for hypertension (>140/90 mm Hg or current or previous use of antihypertensive medication), according to categories of TSH. Results: Within the reference range of TSH (0.50–3.5 mU/liter), there was a linear increase in blood pressure with increasing TSH. The average increase in systolic blood pressure was 2.0 mm Hg [95% confidence interval (CI) 1.4–2.6 mm Hg] per milliunit per liter increase in TSH among men, and 1.8 mm Hg (95% CI 1.4–2.3 mm Hg) in women. The corresponding increase in diastolic blood pressure was 1.6 mm Hg (95% CI 1.2–2.0 mm Hg) in men and 1.1 mm Hg (95% CI 0.8–1.3 mm Hg) in women. Comparing TSH of 3.0–3.5 mU/liter (upper part of the reference) with TSH of 0.50–0.99 mU/liter (lower part of the reference), the odds ratio for hypertension was 1.98 (95% CI 1.56–2.53) in men and 1.23 (95% CI 1.04–1.46) in women. Conclusion: Within the reference range of TSH, we found a linear positive association between TSH and systolic and diastolic blood pressure that may have long-term implications for cardiovascular health.


2021 ◽  
pp. 089198872199681
Author(s):  
Kerry Hanna ◽  
Clarissa Giebel ◽  
Hilary Tetlow ◽  
Kym Ward ◽  
Justine Shenton ◽  
...  

Background: To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers. Method: Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives. Results: 20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures. Conclusions: The findings from this research shed light on the longer-term psychological impacts of the UK Government’s public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.


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