scholarly journals Quality of Online Health Information Regarding Sickle Cell Disease Transition

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4719-4719
Author(s):  
Steffi Shilly ◽  
Jane Lindahl ◽  
Dava Szalda ◽  
Caren Steinway ◽  
Sophia Jan
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Search Engines ◽  
The Internet ◽  
Online Health Information ◽  
Cell Disease ◽  
High Quality ◽  
Quality Of Information ◽  
Website Content

Abstract Introduction: As modern medicine has decreased mortality rates of children with Sickle Cell Disease (SCD), patients with SCD are living into adulthood and transitioning to adult care. However transition for these patients has proven to be a vulnerable time. Thus, it is important to prepare youth adequately for chronic care transition through expectations, knowledge, skills, efficacy, and support. The advancement of the Internet has provided patients a primary source to search and gather health-related knowledge. Internet usage is almost ubiquitous among American youth with 92% of them accessing the Internet regularly. Previous studies have shown a wide spectrum in the quality of information available on the Internet. Yet, to the best of our knowledge, a systematic review of online health information regarding transition of patients with SCD has not been conducted. Methods: Data were collected in December 2017 and January 2018 using the 5 search engines that have been identified as being most commonly utilized. Keywords were selected to represent phrases that people may use while searching for information on the Internet regarding SCD transition. Combinations of the keywords were used in the searches, and the first 20 links for each search term were considered in our study. Incognito window was used so that previous searches did not influence the results from the search engines. Websites that met the required inclusion/ exclusion criteria were included in this study. Websites were divided as SCD transition or non-SCD transition specific websites based on whether they mentioned sickle cell disease or not. Websites were classified as academic/educational institution, health department, hospital/private clinician, professional body, or other (includes Wiki, WebMD, and etc). Flesch Reading Ease (FRE) Score was used to evaluate website readability. A novel 12-item transition-specific content tool was produced to evaluate website content. Website quality was evaluated by assessing for the presence or absence of the HONcode certification and using the EQIP tool. A high quality website was defined as having an EQIP Score ≥ 75% in this study. Website quality and content was scored by two research assistants employed in the General Pediatrics department at Northwell Health. Statistical analysis was performed using Excel and online tools. A p-value <0.05 was the criterion for statistical significance. Results: Using the combination of keywords decided, 9522 websites were identified using the selected search engines. Of the 9522 websites, 157 eligible websites met the inclusion criteria and were analyzed. 92 websites were SCD specific links and 65 websites were non-SCD specific links. 27 websites had a HONCode certification issued to them. Only 1 non-SCD website and 26 SCD specific websites had HONCode certifications. The average EQIP score was 59.0 ± 3.0. The average EQIP score for SCD specific websites was 56.9 ± 5.2 and was 61.1 ± 5.0 for non-SCD specific websites. Based on the cutoff value of an EQIP score ≥ 75%, 6 SCD specific websites and 13 non-SCD specific websites are of high quality. The interrater reliability in EQIP ratings was good (Pearson correlation: 0.660). The average FRE score was 49.0 ± 4.0. The average FRE score was 51.9 ± 13.7 for SCD specific websites and 46.1 ± 15.8 for non-SCD specific websites. The average website content score was 28.6 ± 10.7. The average website content score was 21.0 ± 7.1 for SCD specific websites and 36.1 ± 10.2 for non-SCD specific websites. The results of the two tailed t-test indicated that FRE scores between HONCode certified and non-HONCode certified websites were significant for among SCD websites as well as among combined SCD and non-SCD websites (p < 0.05). All identified websites will also be reviewed by two physicians who specialize in caring for young adults with chronic illnesses. Analyses from their review will be conducted prior to the conference. Conclusion: Although seeking health care information online is very common, the overall quality of information about sickle cell disease transition on the Internet is poor. Steps should be taken to make changes that will allow for adequate online healthcare information regarding sickle cell disease transition. By doing this, youth going through transition will be prepared by having competent expectations, knowledge, skills, efficacy, and support available on the Internet. Disclosures No relevant conflicts of interest to declare.

The quality of information about sickle cell disease on the Internet for youth

2016 ◽  
Vol 64 (4) ◽  
pp. e26309 ◽  
Author(s):  
Vicky R. Breakey ◽  
Lauren Harris ◽  
Omar Davis ◽  
Arnav Agarwal ◽  
Carley Ouellette ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
The Internet ◽  
Cell Disease ◽  
Quality Of Information

scholarly journals Transcranial Doppler screening for stroke risk in children with sickle cell disease: a systematic review

2017 ◽  
Vol 12 (6) ◽  
pp. 580-588 ◽  
Author(s):  
Sara Mazzucco ◽  
Marina Diomedi ◽  
Amrana Qureshi ◽  
Laura Sainati ◽  
Soundrie T Padayachee
Keyword(s):  
Systematic Review ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Transcranial Doppler ◽  
Stroke Risk ◽  
Screening Methods ◽  
Cell Disease ◽  
High Quality ◽  
Screening Practices

Background Sickle cell disease (SCD) is one of the most common causes of stroke in children worldwide. Based on the results of the Stroke Prevention Trial in Sickle Cell Anemia (STOP), annual transcranial Doppler ultrasound (TCD) screening for affected children is standard practice. However, the need for TCD surveillance programs could override the accuracy of the screening, affecting the correct stratification of stroke risk and subsequent clinical management of the target population. Aims To shed light on this issue, a systematic review of the literature on TCD screening for children and adolescents with SCD was carried out (CRD42016050549), according to a list of clinically relevant questions, with a particular focus on screening practices in European countries. Quality of the evidence was rated using the grading of recommendations assessment, development and evaluation. Summary of review Thirty-three studies published in English or French were included (5 randomized controlled trials, 8 experimental non-randomized, and 20 observational studies). The quality of the retrieved evidence ranged between low and high, but was rated as moderate or high most of the times. TCD is effective as a screening tool for the primary prevention of stroke in SCD children. There is no high-quality evidence on the effectiveness of alternative screening methods, such as imaging-TCD with or without angle correction or magnetic resonance angiography. No evidence was found on effectiveness of the screening on children on hydroxyurea and with genotypes other than HbSS and HbS/β0. No European data were found on screening rates or adherence of screening practices to the STOP protocol. Conclusions High-quality studies on alternative screening methods that are currently used in real-world practice, and on screening applicability to specific subgroups of patients are urgently needed. Considering the low awareness of the disease in European countries and the lack of data on screening practices and adherence, clinicians need up-to-date guidelines for more uniform and evidence-based surveillance of children with SCD.

Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease

2006 ◽  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Childhood Cancer ◽  
Children And Adolescents ◽  
Peer Relationships ◽  
Sickle Cell ◽  
Cell Disease ◽  
Life Issues ◽  
Art Research

Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including: -Neuropsychological effects of chemotherapy and radiation therapy -Bone marrow transplantation -Important issues about quality of life during and following treatment -Collaborative research among child-focused psychologists -Standards of psychological care for children and adolescents -Stress and coping in the pediatric cancer experience -The role of family and peer relationships The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.

Health-related quality of life and neuropathic pain in sickle cell disease in Jamaica

2021 ◽  
pp. 101107
Author(s):  
Rachel Bartlett ◽  
Zachary Ramsay ◽  
Amza Ali ◽  
Justin Grant ◽  
Angela Rankine-Mullings ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neuropathic Pain ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

Chronic brain damage in sickle cell disease and its relation with quality of life

2016 ◽  
Vol 147 (12) ◽  
pp. 531-536
Author(s):  
Elena Cela ◽  
Ana G. Vélez ◽  
Alejandra Aguado ◽  
Gabriela Medín ◽  
José M. Bellón ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Brain Damage ◽  
Sickle Cell ◽  
Cell Disease

Hip Dysfunction and Quality of Life in Patients With Sickle Cell Disease

2015 ◽  
Vol 54 (14) ◽  
pp. 1354-1358 ◽  
Author(s):  
Cristiane Dias Malheiros ◽  
Luanne Lisle ◽  
Marilda Castelar ◽  
Katia Nunes Sá ◽  
Marcos Almeida Matos
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

Anxiety, depressive disorders, and quality of life in adults with sickle cell disease

2013 ◽  
Vol 20 (2) ◽  
pp. 80-86 ◽  
Author(s):  
H. El-Shinnawy ◽  
T. Goueli ◽  
M. Nasreldin ◽  
A. Meshref
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Depressive Disorders ◽  
Cell Disease

scholarly journals COVID Symptoms and COVID Anxiety in Sickle Cell Disease

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 16-17
Author(s):  
Wally R Smith ◽  
Benjamin Jaworowski ◽  
Shirley Johnson ◽  
Thokozeni Lipato ◽  
Daniel M Sop
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Telephone Survey ◽  
Cell Disease ◽  
Weighted Mean ◽  
The Us ◽  
Associated Symptoms ◽  
At Home

Background Even before the US upswing of the current COVID pandemic, the number of sickle cell disease (SCD) patients coming to hospitals and EDs appeared to fall drastically. This happened despite SCD patients having often been heavy utilizers of the ED and hospital for their iconic vaso-occlusive crises (VOC). Though ambulatory SCD clinics quick converted largely to telehealth in order to comply with stay-at-home orders designed to suppress person-to-person transmission, some SCD patients appeared to avoid care, delay care, or refuse doctors' invitations for care. Presumably patients did so out of COVID fears, but this has not been confirmed in the literature. Further, whether these patients had COVID symptoms but stayed at home has not been studied. As part of quality improvement (QI) to conduct COVID surveillance in an adult sickle cell program, we sought to explain and predict SCD health care utilization patterns we were observing, as well as to determine urgent physical and mental health needs of patients who appeared to be avoiding care. Methods Fifteen staff in the Adult Sickle Cell Medical Home at Virginia Commonwealth University, a large urban academic medical center, conducted a telephone survey ("wellness check"was used when we talked to patients) of all known adults with SCD over 19 days in 2020. A staff member confirmed the patient had SCD, asked permission to proceed, then asked about symptoms consistent with COVID-19. At the end of the telephone survey, respondents wer invited to complete an email survey of sickle cell and COVID-19 utilization attitudes (19-33 items, depending on the response pattern, either drawn from the National Health Interview Survey, from the Adult Sickle Cell Quality of Life Measurement quality of care survey, or drafted by the authors), the Sickle Cell Stress Survey-Adult (SCSS-A, a 10-item previously validated survey), and anxiety and depression (PHQ9 of the PRIME-MD). Results Of 622 adults approached by phone call, 353 responded to the following yes/no screening questions regarding the prior 14 days: fever over 100 F 0/353 (0.00%); cough 3/353(0.01%); difficulty breathing 0/353(0.00%); unexplained shortness of breath 2/353(0.01%); sore throat 2/353 (0.01%); unexplained muscle soreness 2/353(0.01%);contact with anyone who tested positive for COVID-19 2/353(0.01%); testing for COVID 19 6/353(0.02%). For QI purposes, we set a threshold of three or more COVID-associated symptoms or the presence of fever as criteria requiring intense telephone or in-person staff monitoring for the following week. Only three patients met criteria. A total of 219/353 had email surveys sent. Of 63 patients (28.8%) who returned email surveys by June 10, 2020, 35.9% had already managed a "pain attack" at home 4 or more times in the prior 12 months, and 45.5% of these said their bad ER experiences were very or somewhat important in that decision. In the prior 14 days, although 30/64 reported a crisis for at least one day, only 4/64 had visited the Emergency Department for pain. On a 0-10 scale, 21/61 patients endorsed "0" for worry that they would be COVID-infected by going for medical care (weighted mean 3.9), but 18/59 endorsed "10" for worry they were more at risk of COVID because of SCD (weighted mean 6.31), and 22/60 endorsed "10" for worry they would fare worse than others if COVID infected (weighted mean 6.97). Many patients forwent "needed" care (16/62) or delayed "needed" care by at least a day (36/61). Eleven patients met criteria for moderately severe to severe depression on the PHQ-9, and 28/63 somewhat or strongly agreed with the statement "death is always on the back of my mind" on the SCSS-A. Conclusions In adolescents and adults with SCD, many were already reticent to come to the ED for pain, but a significant portion reported delays or avoidance of needed care during the early stages of the US COVID pandemic, and few reported using the ED despite over half reporting at least one crisis day in 14. Patients nonetheless reported very few COVID-associated symptoms. Fears of COVID infection/susceptibility may limit visits for needed sickle cell care among adults. Acknowledgements: Mica Ferlis RN, FNP, Caitlin McManus, RN, FNP, Emily Sushko, RN, FNP, Justin West, RN, Kate Osborne, RN, Stefani Vaughan-Sams, Marla Brannon, BS, Nakeiya Williams, BS Disclosures Smith: GlycoMimetics, Inc.: Consultancy; Emmaeus Pharmaceuticals, Inc.: Consultancy; Novartis, Inc.: Consultancy, Other: Investigator, Research Funding; Global Blood Therapeutics, Inc.: Consultancy, Research Funding; Shire, Inc.: Other: Investigator, Research Funding; NHLBI: Research Funding; Patient-Centered Outcomes Research Institute: Other: Investigator, Research Funding; Health Resources and Services Administration: Other: Investigator, Research Funding; Incyte: Other: Investigator; Pfizer: Consultancy; Ironwood: Consultancy; Novo Nordisk: Consultancy; Imara: Research Funding; Shire: Research Funding.

Health Related Quality of Life of Children with Sickle Cell Anemia and Their Parents; Quantitative Study in Albaha; Saudi Arabia

2021 ◽  
pp. 9-17
Author(s):  
Turki Alzahrani ◽  
Raed Alzahrani ◽  
Amer Alzahrani ◽  
Abdullah Alzahrani ◽  
Abdu Adawi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Saudi Arabia ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Healthy Children ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

Aims: To gain a better understanding of the quality of life (QoL) of children and impact of this disease on parents QoL. Study Design: Cross-sectional study. Place and Duration of Study: The study was conducted in King Fahd Hospital, Albaha city, Albaha, Saudi Arabia, between March2020 and February 2021. Methodology: We included 95 responses. Two different tools were used for the purpose of this study. PedsQL™ Sickle Cell Disease Module was used to measure health-related quality of life (HRQoL) in healthy children and adolescents and those with acute and chronic health conditions. Moreover, PedsQL™ Family Information Form was completed by caregivers. Median and interquartile range were used for numerical variables since they were skewed. Bivariate analyses were carried out using non-parametrical tests and Pearson correlation. The prediction of QoL was accomplished through multivariate analysis. Results: A total of (95) responses were analyzed. Female respondents were 52.6%. The age median was 12 (IQR=10-14). Mothers represented the most frequent informant 46.3% in this current study. Significant association was found between QoL and certain independent factors, some of which is parental level of education (P< .001) and marital support (P< .001). Conclusion: Sickle cell disease (SCD) is a major condition accounts for a huge burden on variable levels. This study reported that low QoL among children affected by SCD. Higher education and current marital status of the parents were significantly associated with high QoL in SCD patients. Number of workdays affected due to child health was significantly correlated with low QoL.

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