scholarly journals Haemophilia specialist nurses’ perceptions of haemophilia B

2021 ◽  
Vol 8 (1) ◽  
pp. 119-127
Author(s):  
Steve Chaplin ◽  
Maj Friberg Birkedal ◽  
Erica Crilly ◽  
Simon Fletcher ◽  
Sara Garcia ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Online Survey ◽  
Optimal Treatment ◽  
Haemophilia A ◽  
Current Clinical Practice ◽  
Haemophilia B ◽  
Health Related ◽  
Specialist Nurses ◽  
Nurses Perceptions ◽  
The Impact

Abstract Introduction Some clinicians believe that haemophilia B is associated with less bleeding than haemophilia A, yet there appears to be little difference in health-related outcomes. Current clinical practice reduces the risk of bleeds, making differences difficult to measure. We surveyed specialist haemophilia nurses to discern their opinions about the impact of haemophilia B compared to haemophilia A. Methods Between July and September 2020, European and Canadian nurses were invited to complete an online survey (25 questions) about perceptions of management and treatment of haemophilia B. Results Fifty-nine nurses (46 European, 13 Canadian) completed the survey. Bleeding was reported as different in haemophilia B by 37% of respondents, and treatment as different by over half. Opinions and experience around using extended half-life (EHL) products varied. Self-reported confidence in using EHL products was rated at a mean of 7.1 (range 3–10) with 47% believing these would remain the optimal treatment in 2025. Conclusion Some nurses believe haemophilia A and B are managed differently. Variations in experience and levels of confidence in the use of EHL products, combined with a belief that these products will remain an optimal treatment for haemophilia B for the next five years, indicates a need for education to promote confidence and competence.

scholarly journals Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Significant Difference ◽  
Patient Reported ◽  
Health Related Qol ◽  
Health Related ◽  
Secondary Outcomes ◽  
The Impact ◽  
Over Time

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

scholarly journals Impact of Adopting Population Pharmacokinetics for Tailoring Prophylaxis in Haemophilia A Patients: A Historically Controlled Observational Study

2019 ◽  
Vol 119 (03) ◽  
pp. 368-376 ◽  
Author(s):  
Michaela Stemberger ◽  
Felix Kallenbach ◽  
Elisabeth Schmit ◽  
Alanna McEneny-King ◽  
Federico Germini ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Activity Level ◽  
Critical Threshold ◽  
Life Questionnaire ◽  
Haemophilia A ◽  
Factor Activity ◽  
Traffic Light ◽  
Plasma Factor ◽  
Population Pk ◽  
The Impact

Background Performing individual pharmacokinetics (PK) studies in clinical practice can be simplified by adopting population PK-based profiling on limited post-infusion samples. The objective of this study was to assess the impact of population PK in tailoring prophylaxis in patients with haemophilia A. Patients and Methods Individual weekly treatment plans were developed considering predicted plasma factor activity levels and patients' lifestyle. Patients were trained using a visual traffic-light scheme to help modulate their level of physical activity with respect to factor infusions timing. Annualized joint bleeding rate (ABJR), haemophilia-specific quality of life questionnaire for adults (Haemo-QoL-A) and factor utilization were measured for 12 months before and after tailoring, compared within patients and analysed separately for those previously on prophylaxis (P), situational prophylaxis (SP) or on-demand (OD). Results Sixteen patients previously on P, 10 on SP and 10 on OD were enrolled in the study. The median (lower, upper quartile) ABJR changed from 2.0 (0, 4.0) to 0 (0, 1.6) for P (p = 0.003), from 2.0 (2.0, 13.6) to 3.0 (1.4, 7.2) for SP (p = 0.183) and from 16.0 (13.0, 25.0) to 2.3 (0, 5.0) for OD (p = 0.003). The Haemo-QoL-A total score improved for 58% of P, 50% of SP and 29% of OD patients. Factor utilization (IU/kg/patient/year) increased by 2,400 (121; 2,586) for P, 1,052 (308; 1,578) for SP and 2,086 (1,498; 2,576) for OD. One of 138 measurements demonstrated a factor activity level below the critical threshold of 0.03 IU/mL while the predicted level was above the threshold. Conclusion Implementing tailored prophylaxis using a Bayesian forecasting approach in a routine clinical practice setting may improve haemophilia clinical outcomes.

scholarly journals Ethno-cultural disparities in mental health during the COVID-19 pandemic: a cross-sectional study on the impact of exposure to the virus and COVID-19-related discrimination and stigma on mental health across ethno-cultural groups in Quebec (Canada)

BJPsych Open ◽  
2020 ◽  
Vol 7 (1) ◽  
Author(s):  
Diana Miconi ◽  
Zhi Yin Li ◽  
Rochelle L. Frounfelker ◽  
Tara Santavicca ◽  
Jude Mary Cénat ◽  
...  
Keyword(s):  
Mental Health ◽  
Risk Factors ◽  
Online Survey ◽  
Cross Sectional Study ◽  
Cultural Group ◽  
Cultural Groups ◽  
Cross Sectional ◽  
Public Health Authorities ◽  
Health Related ◽  
The Impact

Background Although social and structural inequalities associated with COVID-19 have been documented since the start of the pandemic, few studies have explored the association between pandemic-specific risk factors and the mental health of minority populations. Aims We investigated the association of exposure to the virus, COVID-19-related discrimination and stigma with mental health during the COVID-19 pandemic, in a culturally diverse sample of adults in Quebec (Canada). Method A total of 3273 residents of the province of Quebec (49% aged 18–39 years, 57% women, 51% belonging to a minority ethno-cultural group) completed an online survey. We used linear and ordinal logistic regression to identify the relationship between COVID-19 experiences and mental health, and the moderating role of ethno-cultural identity. Results Mental health varied significantly based on socioeconomic status and ethno-cultural group, with those with lower incomes and Arab participants reporting higher psychological distress. Exposure to the virus, COVID-19-related discrimination, and stigma were associated with poorer mental health. Associations with mental health varied across ethno-cultural groups, with exposed and discriminated Black participants reporting higher mental distress. Conclusions Findings indicate sociocultural inequalities in mental health related to COVID-19 in the Canadian context. COVID-19-related risk factors, including exposure, discrimination and stigma, jeopardise mental health. This burden is most noteworthy for the Black community. There is an urgent need for public health authorities and health professionals to advocate against the discrimination of racialised minorities, and ensure that mental health services are accessible and culturally sensitive during and in the aftermath of the pandemic.

scholarly journals Specializing Nurses as An Indirect Education Program for Stoma Patients

2019 ◽  
Vol 16 (13) ◽  
pp. 2272
Author(s):  
Manuel García-Goñi
Keyword(s):  
Chronic Conditions ◽  
Cost Effective ◽  
Effectiveness Analysis ◽  
Education Strategy ◽  
Related Quality ◽  
Health Related ◽  
Low Incidence ◽  
Specialist Nurses ◽  
The Impact

Education programs are beneficial for patients with different chronic conditions. Prior studies have examined direct education, where information is transferred directly to patients. In contrast, in this program, information is transferred directly to nurses who become specialists and transfer education individually to patients. Hence, this paper evaluates the impact of having specialist nurses for stoma patients at hospitals, as those nurses provide healthcare to patients but also inform and educate patients about their condition and needs. The analysis uses an observational study with ostomized patients in Spain at hospitals with and without specialist nurses, and measures health service utilization and health-related quality of life (HRQL), besides performing a cost analysis and a cost-effectiveness analysis at both types of hospitals. The results show that patients with access to specialist nurses self-manage better, present lower adverse events and a better evolution of HRQL, and significantly demand more consultations with specialist nurses and less to A&E, primary care or specialists, resulting in important savings for the health system. Consequently, specializing or hiring nurses to provide indirect education to stoma patients is cost-effective and highly beneficial for patients. This type of indirect education strategy might be considered for specific conditions with low incidence or difficulties in identifying target patients or delivering information directly to them.

scholarly journals The Immediate Impact of the Novel Coronavirus (COVID-19) Pandemic on Adolescents with Severe Obesity - Another Pandemic

2021 ◽  
Vol 2 (3) ◽  
pp. 62-71
Author(s):  
Matheson BE ◽  
Herdes RE ◽  
Garza D ◽  
Shepard WE ◽  
Bruzoni M ◽  
...  
Keyword(s):  
Physical Activity ◽  
Online Survey ◽  
Severe Obesity ◽  
Medical Center ◽  
Well Being ◽  
The Novel ◽  
Adolescent Patients ◽  
Health Related ◽  
Novel Coronavirus ◽  
The Impact

Background: The impact of the novel coronavirus 2019 (COVID-19) on the health and well-being of adolescents with obesity is currently unknown. The shelter-in place (SIP) orders imposed disruptions in everyday routines for all persons, including youth with obesity. Obtaining real-time data could offer important information about how youth with severe obesity are faring in the midst of this global crisis. Hence, this cross-sectional study aims to assess the impact of the COVID-19 pandemic on health-related behavior changes in adolescent patients with severe obesity. Methods: Fifteen adolescents with severe obesity (M ± SD: 16.40 ± 1.67 years; 66.7% female; 40% Hispanic) and 19 parents (45.83 ± 6.98 years; 94.7% female; 47.4% Hispanic) receiving care at an adolescent bariatric surgery clinic at a university medical center participated (20% response). Participants completed an online survey about the impact of COVID-19 and SIP on: eating habits, physical activity, sleep, screen time, mood, and motivation for behavior change. Parents completed similar questions regarding the impact of SIP on their child’s health. Results: Descriptive analyses revealed adolescents reported varied sleep quality and quantity, later bedtimes, increased home-cooked and family meals, decreased takeout food consumption, and increased anxiety levels. Almost half reported increased snacking. Changes in physical activity were noted. Parent and adolescent responses were mostly aligned, with the exception of self-reported weight change. Conclusions: Adolescents with severe obesity are facing challenges in maintaining health-related behavioral goals during SIP. Providers should be prepared to discuss and manage the impact of COVID-19 on adolescent patients with obesity.

scholarly journals The impact of data from remote measurement technology on the clinical practice of healthcare professionals in depression, epilepsy and multiple sclerosis: survey

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
J. A. Andrews ◽  
M. P. Craven ◽  
A. R. Lang ◽  
B. Guo ◽  
R. Morriss ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Health Care Professionals ◽  
Clinical Care ◽  
Survey Study ◽  
Measurement Technology ◽  
Remote Measurement ◽  
Smartphone Apps ◽  
Health Related ◽  
The Impact

Abstract Background A variety of smartphone apps and wearables are available both to help patients monitor their health and to support health care professionals (HCPs) in providing clinical care. As part of the RADAR-CNS consortium, we have conducted research into the application of wearables and smartphone apps in the care of people with multiple sclerosis, epilepsy, or depression. Methods We conducted a large online survey study to explore the experiences of HCPs working with patients who have one or more of these conditions. The survey covered smartphone apps and wearables used by clinicians and their patients, and how data from these technologies impacted on the respondents' clinical practice. The survey was conducted between February 2019 and March 2020 via a web-based platform. Detailed statistical analysis was performed on the answers. Results Of 1009 survey responses from HCPs, 1006 were included in the analysis after data cleaning. Smartphone apps are used by more than half of responding HCPs and more than three quarters of their patients use smartphone apps or wearable devices for health-related purposes. HCPs widely believe the data that patients collect using these devices impacts their clinical practice. Subgroup analyses show that views on the impact of this data on different aspects of clinical work varies according to whether respondents use apps themselves, and, to a lesser extent, according to their clinical setting and job role. Conclusions Use of smartphone apps is widespread among HCPs participating in this large European survey and caring for people with epilepsy, multiple sclerosis and depression. The majority of respondents indicate that they treat patients who use wearables and other devices for health-related purposes and that data from these devices has an impact on clinical practice.

scholarly journals Evaluating the impact of investing in the industry of clinical practice guidelines for health systems

2021 ◽  
Author(s):  
Amal Hassanien
Keyword(s):  
Health Care ◽  
Saudi Arabia ◽  
Clinical Practice ◽  
Literature Review ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Online Survey ◽  
Sustainable Investment ◽  
High Level ◽  
The Impact

Abstract Rationale: This research has been conducted to facilitate evidence-informed policymaking and to help health-care policymakers in Saudi Arabia to decide whether or not a sustainable investment in the CPG industry is socially and economically viable. Objectives: The objective is to investigate: (i) whether the clinical practice guidelines help to improve clinical practice and save costs, and (ii) the views in Saudi Arabia about implementing clinical practice guidelines. Methods: The study employs mixed methods, including: (i) a literature review to evaluate the benefits of implementing clinical practice guidelines, and (ii) an online survey to investigate views about implementing the guidelines' benefits. Results: (i) The clinical practice guidelines do help in improving clinical practice, but the evidence about their impact on saving costs is insufficient in the literature. (ii) The survey demonstrated a high level of awareness among health system actors in Saudi Arabia of the importance of having nationally unified clinical guidelines. Recommendations: Investment in the clinical practice guidelines industry seems socially and economically viable.

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