scholarly journals Hemophilia in Patients 50 Years or Older: Quality of Life, Health Maintenance, Cancer Screening and COVID19

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 1049-1049
Author(s):  
Vatsala Katiyar ◽  
Mackenzie Day ◽  
Mandy Schum ◽  
Tracey Gaslin ◽  
Racquel Brown ◽  
...  

Abstract INTRODUCTION: Major progress has been made in treatment of patients with hemophilia over the last 30 or 40 years. Factor replacement, eliminating HIV and hepatitis C transmission, and more recently, longer-acting coagulation factors and immune treatments play a role in allowing patients with hemophilia to experience a longer and healthier life. Previous studies show that invasive procedures like colonoscopies, bronchoscopies or biopsies can safely be performed in patients with hemophilia if an appropriate factor replacement is given. However, because of their risk of bleeding, patients with hemophilia may be reluctant to undergo such invasive procedures or get recommended health maintenance, and these fears may have been worsened by the outbreak of COVID19. Therefore, we wondered if older patients with hemophilia have been impacted by the COVID19 pandemic and have received the recommended vaccinations and cancer screenings. METHODS: The data for this study originates in the hemophilia clinics of two academic centers in Kentucky (University of Louisville and University of Kentucky). IRB approval was obtained in both institutions. Surveys were mailed or emailed to patients 50 years of age or older in our database. Follow-up phone calls were made to patients who did not respond. The surveys had 17 health related questions focusing on general well-being, pain, smoking, cancer screening, vaccinations and COVID19. The original survey was performed between 11/2020 and 3/2021 and COVID19 vaccination status was updated in 7/2021. Overall, 50 patients in our database met the study criteria (hemophilia and age 50 years or older) and 36 responded (72%). Some patients did not answer all questions. Patient details are given in Table 1. Median age was 61 years, most patients had mild to moderate hemophilia, three patients were positive for HIV (all with a negative viral load), and 12 had been infected with hepatitis C. Questions related to the impact of COVID19 explored anxiety of leaving the house, meeting with other people, availability of medical appointments, and getting necessary medications. Patients were asked if they received an influenza vaccination and, if older than 60 years, if they had received a pneumonia vaccination. RESULTS: Overall, most patients reported a good quality of life (Table 2). Nevertheless, most were often or always in pain. About half of the patients were on opioid pain medication. A minority took only over the counter pain medication or no pain medication. 57% of respondents had received both vaccinations for COVID19, two-thirds of the unvaccinated planned to get it. 55% of respondents had undergone a colonoscopy in the previous 5 years. Only 18% identified themselves as current smokers. Few men had undergone screening for prostate cancer. Finally, 5 of 32 patients reported a previous diagnosis of cancer (3 patients with localized skin cancer, 2 patients with head and neck cancers). CONCLUSIONS: Quality of life in patients with hemophilia is self-reported as good or excellent in most older patients. However, chronic pain problems persist and are not always sufficiently controlled. One reason may be that many of our patients did not have consistent factor replacements early in their life. Only a minority of patients reported a psychological or physical impact of the COVID19 lockdown. Most patients as of June or July 2021 have been vaccinated against COVID19, however this is probably lower than in an age-matched group. Mayo Clinic's vaccine tracker reported a vaccination rate of 92.3% for the 65 and older age group in Kentucky (as of July 31 st of 2021). The rate of influenza vaccination is probably comparable to rates in other rural communities. The same applies to cancer screening by colonoscopy and PSA screening. The rate of smoking of 18% is relatively low but may suffer from under-reporting. Overall, health maintenance in older patients with hemophilia appears acceptable but can certainly be improved. Limitations of our study are small sample size and that most patients have mild to moderate hemophilia. We plan to expand our study to other centers to get more insight into health issues in older patients with hemophilia. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.

Author(s):  
Ansam Barakat ◽  
Matthijs Blankers ◽  
Jurgen E Cornelis ◽  
Nick M Lommerse ◽  
Aartjan T F Beekman ◽  
...  

Abstract Background This study evaluated whether providing intensive home treatment (IHT) to patients experiencing a psychiatric crisis has more effect on self-efficacy when compared to care as usual (CAU). Self-efficacy is a psychological concept closely related to one of the aims of IHT. Additionally, differential effects on self-efficacy among patients with different mental disorders and associations between self-efficacy and symptomatic recovery or quality of life were examined. Methods Data stem from a Zelen double consent randomised controlled trial (RCT), which assesses the effects of IHT compared to CAU on patients who experienced a psychiatric crisis. Data were collected at baseline, 6 and 26 weeks follow-up. Self-efficacy was measured using the Mental Health Confidence Scale. The 5-dimensional EuroQol instrument and the Brief Psychiatric Rating Scale (BPRS) were used to measure quality of life and symptomatic recovery, respectively. We used linear mixed modelling to estimate the associations with self-efficacy. Results Data of 142 participants were used. Overall, no difference between IHT and CAU was found with respect to self-efficacy (B = − 0.08, SE = 0.15, p = 0.57), and self-efficacy did not change over the period of 26 weeks (B = − 0.01, SE = 0.12, t (103.95) = − 0.06, p = 0.95). However, differential effects on self-efficacy over time were found for patients with different mental disorders (F(8, 219.33) = 3.75, p < 0.001). Additionally, self-efficacy was strongly associated with symptomatic recovery (total BPRS B = − 0.10, SE = 0.02, p < 0.00) and quality of life (B = 0.14, SE = 0.01, p < 0.001). Conclusions Although self-efficacy was associated with symptomatic recovery and quality of life, IHT does not have a supplementary effect on self-efficacy when compared to CAU. This result raises the question whether, and how, crisis care could be adapted to enhance self-efficacy, keeping in mind the development of self-efficacy in depressive, bipolar, personality, and schizophrenia spectrum and other psychotic disorders. The findings should be considered with some caution. This study lacked sufficient power to test small changes in self-efficacy and some mental disorders had a small sample size. Trial registration This trial is registered at Trialregister.nl, number NL6020.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Elena Marcus ◽  
Paddy Stone ◽  
Anna-Maria Krooupa ◽  
Douglas Thorburn ◽  
Bella Vivat

Abstract Background Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?. Methods We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists. Results We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes. Conclusion The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.


2021 ◽  
Vol 28 (1) ◽  
pp. 42-50
Author(s):  
Nicole M. Glenn ◽  
Lisa Allen Scott ◽  
Teree Hokanson ◽  
Karla Gustafson ◽  
Melissa A. Stoops ◽  
...  

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.


Author(s):  
Akio Miyasaka ◽  
Yuichi Yoshida ◽  
Akiko Suzuki ◽  
Yasuhiro Takikawa

Abstract Purpose Long-term effects on patient health-related quality of life (HRQoL) after direct-acting antiviral (DAA) treatment for hepatitis C virus (HCV) are unknown. We assessed the impact of DAA-mediated HCV clearance on HRQoL from DAA initiation to 1 year after confirmed sustained virological response at 24 weeks post-treatment (SVR24). Methods HRQoL was evaluated using the eight-item Short Form Health Survey (SF-8). Chronic HCV-infected patients were treated for 12 weeks with sofosbuvir-based DAAs. SF-8 was administered at baseline, treatment cessation, SVR24, and 1-year post-SVR24. Results A total of 109 chronic HCV-infected patients were enrolled. The average SF-8 scores were higher than the Japanese national standard values for bodily pain (BP) and mental health at baseline and for general health at 1-year post-SVR24. None of the SF-8 scores differed significantly between baseline and 1-year post-SVR24. Regarding age, sex, liver status, and treatment regimen, the SF-8 scores at 1-year post-SVR24 were affected by only age; individuals aged < 65 years had significantly higher physical component score (PCS), physical functioning, role physical, and BP scores than older individuals. In the multivariable analysis, only age of ≥ 65 years was significantly associated with influencing PCS at 1-year post-SVR24. However, no significant factors were identified for mental component score. Conclusion Upon long-term assessment, although more factors trended higher than national standard values at 1-year post-SVR24 than at baseline, there were no significant changes within factors. As PCS tended to be associated with age, patients aged ≥ 65 years should be carefully monitored for PCS.


2014 ◽  
Vol 26 (6) ◽  
pp. 1011-1019 ◽  
Author(s):  
Orii McDermott ◽  
Vasiliki Orgeta ◽  
Hanne Mette Ridder ◽  
Martin Orrell

ABSTRACTBackground:Music in Dementia Assessment Scales (MiDAS), an observational outcome measure for music therapy with people with moderate to severe dementia, was developed from qualitative data of focus groups and interviews. Expert and peer consultations were conducted at each stage of the scale development to maximize its content validity. This study aimed to evaluate the psychometric properties of MiDAS.Methods:Care home residents with dementia attended weekly group music therapy for up to ten sessions. Music therapists and care home staff were requested to complete weekly MiDAS ratings. The Quality of Life Scale (QoL-AD) was completed at three time-points.Results:A total of 629 (staff = 306, therapist = 323) MiDAS forms were completed. The statistical analysis revealed that MiDAS has high therapist inter-rater reliability, low staff inter-rater reliability, adequate staff test-retest reliability, adequate concurrent validity, and good construct validity. High factor loadings between the five MiDAS Visual Analogue Scale (VAS) items, levels of Interest, Response, Initiation, Involvement, and Enjoyment, were found.Conclusions:This study indicates that MiDAS has good psychometric properties despite the small sample size. Future research with a larger sample size could provide a more in-depth psychometric evaluation, including further exploration of the underlying factors. MiDAS provides a measure of engagement with musical experience and offers insight into who is likely to benefit on other outcomes such as quality of life or reduction in psychiatric symptoms.


2008 ◽  
Vol 28 (4) ◽  
pp. 477-485 ◽  
Author(s):  
Patrick Marcellin ◽  
George K. K. Lau ◽  
Stefan Zeuzem ◽  
E. Jenny Heathcote ◽  
Paul J. Pockros ◽  
...  

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