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Online information for spontaneous coronary artery dissection (SCAD) survivors and their families: A systematic appraisal of content and quality of websites
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Physicians depend on access to accurate, up-to-date information and knowledge to make decisions and carry out their work. Today, access to online medical information has become easier than ever before. There is a stream of research interested in understanding how online health information intervenes and influences the patient-physician relationship. While many studies have focused on patients' online health information seeking, fewer studies have addressed how physicians seek and use online medical information. In this qualitative study, focus groups using clinical scenarios were conducted to examine why and when resident physicians turn to search engines like Google for medical information seeking at the point of care. The paper provides insights in physicians' perceptions and experiences of using digital tools for information seeking during patient consultations. Specifically, we identify and discuss information-seeking strategies of physicians during the patient consultation, contributing crucial knowledge for improving the quality of healthcare and patient outcomes.
Introduction: Differences in digital health literacy levels are associated with a lack of access to digital tools, usage patterns, and the ability to effectively use digital technologies. Although some studies have investigated the impact of sociodemographic factors on digital health literacy, a comprehensive evaluation of these factors has not been conducted. Therefore, this study sought to examine the sociodemographic determinants of digital health literacy by conducting a systematic review of the existing literature.
Methods: A search of four databases was conducted. Data extraction included information on study characteristics, sociodemographic factors, and the digital health literacy scales used. Meta-analyses for age and sex were conducted using RStudio software with the metaphor package.
Results: A total of 3922 articles were retrieved, of which 36 were included in this systematic review. Age had a negative effect on digital health literacy (B=-0.05, 95%CI [-0.06; -0.04]), particularly among older adults, whereas sex appeared to have no statistically significant influence among the included studies (B=0.17, 95%CI [-0.61; 0.30]). Educational level, higher income, and social support also appeared to have a positive influence on digital health literacy.
Discussion: This review highlighted the importance of addressing the digital health literacy needs of underprivileged populations, including immigrants and individuals with low socioeconomic status. It also emphasizes the need for more research to better understand the influence of sociodemographic, economic, and cultural differences on digital health literacy.
Conclusions: Overall, this review suggests digital health literacy is dependent on sociodemographic, economic, and cultural factors, which may require tailored interventions that consider these nuances.
Aims
Spontaneous Coronary Artery Dissection (SCAD) is increasingly recognised as an important cause of myocardial infarction predominantly affecting women aged under 50 years. There is limited research addressing female and male SCAD survivors’ experience of, or requirements for, support post-SCAD. This study explored what SCAD survivors wanted to support recovery.
Methods and Results
A qualitative study using semi-structured video and telephone interviews. Data were analysed through thematic analysis using the framework approach. We interviewed 20 participants (19 females) with a mean age of 54.6 (+/-SD 8.5 years). Three overarching themes encapsulated participants’ views about support requirements. 1) Education and information. Participants thought healthcare professionals involved in diagnosis and supporting recovery required greater awareness of SCAD and the psychological effect of SCAD. They wanted accessible SCAD information immediately post-event and during the educational component of cardiac rehabilitation. 2) Physical Activity. Requirements were for advice tailored to individuals’ specific needs, physical capabilities, and physical activity preferences. Participants suggested that utilising wearable technology was helpful to encourage a safe return to activity. 3) Psychosocial Support. Participants wanted formal psychosocial support immediately post-event, during cardiac rehabilitation and in the longer term.
Conclusion
Better healthcare professional training may improve diagnosis and increase support and awareness of SCAD. SCAD support programmes should provide early SCAD specific education utilising online sources, individually tailor physical activity prescription, offer wearable technology to support a return to being active, and provide short- and longer-term psychosocial support. As SCAD is predominately a female condition, programmes should consider female physical activity preferences.
Background
People increasingly use the Internet to seek health information. However, the overall quality of online health information remains low. This situation is exacerbated by the unprecedented “infodemic”, which has had negative consequences for patients. Therefore, it is important to understand how users make judgements about health information by applying different judgement criteria.
Objective
The objective of this study is to determine how patients apply different criteria in their judgement of the quality of online health information during the pandemic. In particular, we investigate whether there is consistency between the likelihood of using a particular judgement criterion and its perceived importance among different groups of users.
Methods
A cross-sectional survey was conducted in one of the leading hospitals in a coastal province of China with a population of forty million. Combined-strategy sampling was used to balance the randomness and the practicality of the recruiting process. A total of 1063 patients were recruited for this study. Chi-square and Kruskal–Wallis analyses were used to analyse the survey data.
Results
In general, patients make quality judgement of health information more frequently based on whether it is familiar, aesthetic, and with expertise. In comparison, they put more weights on whether health information is secure, trustworthy, and with expertise when determining its quality. Criteria that were considered more important were not always those with a higher likelihood of being used. Patients may not use particular criteria, such as familiarity, identification, and readability, more frequently than others even if they consider them to be more important than other do and vice versa. Surprisingly, patients with a primary school degree put more weight on whether health information is comprehensive than those with higher degrees do in determining its quality. However, they are less likely to use this guideline in practice.
Conclusions
To the best of our knowledge, this is the first study to investigate the consistency between the likelihood of using certain quality judgement criteria and their perceived importance among patients grouped by different demographic variables and eHealth literacy levels. The findings highlight how to improve online health information services and provide fine-grained customization of information for users.
Background
This study aims to assess the health literacy of medical patients admitted to hospitals and examine its correlation with patients’ emergency department visits, hospital readmissions, and durations of hospital stay.
Methods
This prospective cohort study recruited patients admitted to the general internal medicine units at the two urban tertiary care hospitals. Health literacy was measured using the full-length Test of Functional Health Literacy in Adults. Logistic regression analyses were performed to examine the correlation between health literacy and the desired outcomes. The primary outcome of interest of this study was to determine the correlation between health literacy and emergency department revisit within 90 days of discharge. The secondary outcomes of interest were to assess the correlation between health literacy and length of stay and hospital readmission within 90 days of discharge.
Results
We found that 50% had adequate health literacy, 32% had inadequate, and 18% of patients had marginal health literacy. Patients with inadequate health literacy were more likely to revisit the emergency department as compared to patients with adequate health literacy (odds ratio: 3.0; 95% Confidence Interval: 1.3–6.9, p = 0.01). In patients with inadequate health literacy, the mean predicted probability of emergency department revisits was 0.22 ± 0.11 if their education level was some high school or less and 0.57 ± 0.18 if they had completed college. No significant correlation was noted between health literacy and duration of hospital stay or readmission.
Conclusions
Only half of the patients admitted to the general internal medicine unit had adequate health literacy. Patients with low health literacy, but high education, had a higher probability of emergency department revisits.
Spontaneous coronary artery dissection (SCAD) is an increasingly recognised cause of acute myocardial infarction, particularly in younger women without classic cardiac risk factors. While recent quantitative studies have noted high anxiety and depression in SCAD survivors, the full range and extent of psychosocial impacts of SCAD is unknown. The present study used a qualitative approach to investigate the psychosocial impacts of SCAD in Australian SCAD survivors. Focus group participants were recruited as part of a larger study of SCAD survivors currently being undertaken by the Victor Chang Cardiac Research Institute. Thirty SCAD survivors participated in one of seven online focus groups, conducted using a semi-structured format. Focus group duration was 1.5 hours. Each was digitally recorded and transcribed. Data were analyzed thematically according to recommended guidelines. One over-arching theme, five main themes and 26 sub-themes were identified. The over-arching theme related to lack of information, while the five main themes related to emotional impacts, issues with self-management, issues with family, impacts on work life, and the need for psychosocial support. The ‘emotional impacts’ theme comprised 11 sub-themes, namely shock and disbelief, confusion and uncertainty, unfairness, fear and anxiety, loss and grief, isolation and loneliness, guilt, invalidation and embarrassment, depression, vulnerability, and frustration. Findings are discussed in light of relevant psychological theories. This qualitative study extends previous quantitative investigations of SCAD survivors by providing an in-depth understanding of the complex, inter-related and highly distressing impacts of SCAD. The findings point to the urgent need for a coherent approach to information provision, the development and delivery of SCAD-specific cardiac rehabilitation programs, and the provision of psychosocial support programs for SCAD survivors.
Objectives
Rare diseases are characterised by low incidence, often with little evidence for effective treatments. Isolated patients and specialist centres for rare diseases are increasingly connected, thanks to the internet. This scoping review aimed to identify issues facing people with a rare disease that authors report may be addressed by electronic resources (mobile applications, websites, social media platforms, telehealth and online portals).
Design
Scoping review guided by the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines.
Data sources
Medline, Embase and PsycInfo were searched, supplemented by hand searches of selected journals, in July 2021.
Eligibility criteria
Peer-reviewed literature in English was searched using terms for rare disease (incidence <1:2000), electronic modalities (eg, mobile phone) and patient support terms. No date limit was set. Conference abstracts were included.
Data extraction and synthesis
Data extracted: rare disease/group of diseases, name of the e-resource, need identified in the patient cohort, features of the e-resource, any other findings or observations of interest. From this, a framework was developed synthesising features across diseases and resources.
Results
Seventy-two papers were found (from 383). Fifty-six electronic resources were described in 64 papers, while 12 papers were exploratory studies. Cystic fibrosis (n=28) was the most frequently addressed, followed by haemophilia (n=16).
Four domains and 23 subdomains of needs were extracted from the papers. The domains of needs were: support for self-management, access to high-quality information, access to appropriate specialist services, and social support. Subdomains are sometimes related to needs of individual rare diseases (eg, social isolation due to infection risk in people with cystic fibrosis). Fifteen electronic resources were identified that supported parents of children with rare disorders.
Conclusions
While it can be argued that rare diseases, per se, may be no less distressing or onerous to care for than a high prevalence disease, rare diseases have unique features: the lengthy odyssey to find a diagnosis, then appropriate specialists, the lack of evidence around effective treatments, guidelines or access to knowledgeable general health service providers. Designers of electronic resources are urged to consult key stakeholders to enhance the effectiveness and usability of resources for people with a rare disease.
Background
As of 2021, 89% of the Australian population are active internet users. Although the internet is widely used, there are concerns about the quality, accuracy, and credibility of health-related websites. A 2015 systematic assessment of infant feeding websites and apps available in Australia found that 61% of websites were of poor quality and readability, with minimal coverage of infant feeding topics and lack of author credibility.
Objective
We aimed to systematically assess the quality, interactivity, readability, and comprehensibility of information targeting infant health behaviors on websites globally and provide an update of the 2015 systematic assessment.
Methods
Keywords related to infant milk feeding behaviors, solid feeding behaviors, active play, screen time, and sleep were used to identify websites targeting infant health behaviors on the Google search engine on Safari. The websites were assessed by a subset of the authors using predetermined criteria between July 2021 and February 2022 and assessed for information content based on the Australian Infant Feeding Guidelines and National Physical Activity Recommendations. The Suitability Assessment of Materials, Quality Component Scoring System, the Health-Related Website Evaluation Form, and the adherence to the Health on the Net code were used to evaluate the suitability and quality of information. Readability was assessed using 3 web-based readability tools.
Results
Of the 450 websites screened, 66 were included based on the selection criteria and evaluated. Overall, the quality of websites was mostly adequate. Media-related sources, nongovernmental organizations, hospitals, and privately owned websites had the highest median quality scores, whereas university websites received the lowest median score (35%). The information covered within the websites was predominantly poor: 91% (60/66) of the websites received an overall score of ≤74% (mean 53%, SD 18%). The suitability of health information was mostly rated adequate for literacy demand, layout, and learning and motivation of readers. The median readability score for the websites was grade 8.5, which is higher than the government recommendations (<grade 8). Overall, 74% (49/66) of the websites obtained a poor rating for interactivity, measuring active control, 2-way communication, and synchronicity. The most common features found on websites were social media links (61/66, 92%), frequently asked questions (48/66, 73%), and videos (44/66, 67%). Only 14% (9/66) of websites presented culturally responsive information.
Conclusions
Quality, content, readability, and interactivity of websites promoting health behaviors during infancy ranged between poor and adequate. Since the 2015 systematic assessment, there was a slight improvement in the quality of websites but no difference in the Suitability Assessment of Materials rating and readability of information. There is a need for researchers and health care providers to leverage innovative web-based platforms to provide culturally competent evidence-based information based on government guidelines that are accessible to those with limited English proficiency.
Background
Spontaneous coronary artery dissection (SCAD) is increasingly recognized as an important cause of myocardial infarction, particularly among women. Spontaneous coronary artery dissection survivors may not know what physical activity is safe and effective, and there may be a psychosocial burden of living with a SCAD diagnosis.
Objectives
This review aimed to determine the evidence regarding physical activity, cardiovascular risk factors, or associated factors, and the psychosocial impact of SCAD for SCAD survivors after hospital discharge.
Design
A systematic review was completed in accordance with PRISMA guidelines.
Data Sources
We searched Medline, Embase, CinAHL, PsychInfo, and Google Scholar until November 2021.
Eligibility criteria for study selection
Outcomes of interest were physical activity participation levels, cardiovascular risk factors and associated risk factors, and psychosocial recovery from SCAD. We included any study (qualitative or quantitative) that reported data pertinent to understanding the impact of SCAD on physical activity and psychosocial aspects of recovery. We also included papers that reported cardiovascular risk or associated risk factors where studies reported outcomes of SCAD survivors. We excluded papers that only provided information on in-hospital management. Any reports that were non-empirical were excluded.
Results
The review included 28 studies. These used a range of methods. None were randomized controlled trials. There were 4167 SCAD participants although some were sourced from the same SCAD registries, so they may not be unique. They were mainly female (n = 3897, 93.5%, range = 57.7–100%), with mean age 48.0 ± 9.8 years at index event. Participants mostly came from the USA, Canada, or The Netherlands. We found very limited evidence for cardiorespiratory fitness improvements following cardiac rehabilitation (CR). Existing CR was not tailored to SCAD specific needs and SCAD survivors lacked guidance about appropriate physical activity. Some participants had high levels of psychosocial distress. Spontaneous coronary artery dissection survivors highlighted the need for tailored support that included family members. Many SCAD survivors have traditional risk factors including hypertension, hyperlipidaemia, and overweight/obesity. Chest pain following SCAD is common.
Conclusion
There is an urgent need to develop physical and psychological recovery programmes for SCAD survivors and test effectiveness via randomized controlled trials. Psychosocial support is particularly required, given the high burden of psychosocial issues.
Background: Spontaneous coronary artery dissection (SCAD) is a nonatherosclerotic etiology of acute coronary syndrome (ACS) that primarily affects younger women with few traditional cardiovascular disease risk factors. The primary objective of this study was to evaluate how younger age impacts the perception of care women receive in the emergency department (ED) at the time of their first or only SCAD. Methods: SCAD survivors were recruited using SCAD Alliance social media platforms to complete a one-time online survey regarding their experiences of seeking treatment for SCAD in the ED and their post-SCAD recovery. A total of 409 participants consented to participate in the parent study and data collected from the 367 participants who reported female gender were further analyzed. Results: Fewer participants <50 years old than would be expected under the null hypothesis (i.e., 65.5% observed vs. 71.2% expected, p = 0.009) reported perceived serious treatment by ED staff, more participants <50 years than would be expected under the null hypothesis (i.e., 12.0% observed vs. 9.3% expected, p = 0.049) reported perceived dismissive treatment by ED staff, and more participants <50 years than would be expected under the null hypothesis (i.e., 13.3% observed vs. 10.8% expected, p = 0.02) reported discharge from the ED without a diagnosis. Conclusions: Results of this study highlight the different experiences of younger SCAD survivors' engaging with providers in the ED. Further research regarding strategies for increasing ED providers' clinical interrogation of SCAD when treating and evaluating younger female patients presenting with ACS symptoms is indicated.
Background
A growing interest has centered on digital storytelling in health research, described as a multi-media presentation of a story using technology. The use of digital storytelling in knowledge translation (KT) is emerging as technology advances in healthcare to address the challenging tasks of disseminating and transferring knowledge to key stakeholders. We conducted a scoping review of the literature available on the use of patient digital storytelling as a tool in KT interventions.
Methods
We followed by Arksey and O’Malley (Int J Soc Res Methodol 8(1):19–32, 2005), and Levac et al. (Implement Sci 5(1):69, 2010) recommended steps for scoping reviews. Search strategies were conducted for electronic databases (Medline, CINAHL, Web of Science, ProQuest dissertations and theses global, Clinicaltrials.gov and Psychinfo). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) was used to report the review process.
Results
Of 4656 citations retrieved, 114 full texts were reviewed, and twenty-one articles included in the review. Included studies were from nine countries and focused on an array of physical and mental health conditions. A broad range of interpretations of digital storytelling and a variety of KT interventions were identified. Digital storytelling was predominately defined as a story in multi-media form, presented as a video, for selective or public viewing and used as educational material for healthcare professionals, patients and families.
Conclusion
Using digital storytelling as a tool in KT interventions can contribute to shared decision-making in healthcare and increase awareness in patients’ health related experiences. Concerns centered on the accuracy and reliability of some of the information available online and the impact of digital storytelling on knowledge action and implementation.
Background:
Spontaneous coronary artery dissection (SCAD) is an increasingly recognized cause of acute coronary syndrome that disproportionally affects younger women. The underlying etiology is incompletely understood, postmorbid psychological distress is high, and treatment plans are predominantly based on clinician experience. There remains uncertainty on how to adequately address the needs of patients with SCAD as part of secondary prevention.
Method:
As a Define and Refine phase of the ORBIT model (Phase 1), this study investigated SCAD patients' challenges and rehabilitative intervention needs using a qualitative research design. Patients with SCAD were purposively recruited to participate in structured interviews that were analyzed using inductive thematic coding techniques.
Results:
Patients with SCAD (n = 15; 86.7% female; mean age = 47.5 years; data saturation reached with patient sample) expressed challenges in (a) navigating uncertainty associated with the disease; (b) living with anxiety; (c) reconciling pre and post-SCAD identities; (d) accurately identifying symptoms and experiencing a sense of isolation in recovery due to gender and young age; and (e) managing changing family dynamics and family members' stress. Intervention needs included (a) addressing unique demographic and cardiovascular profiles when designing programs for cardiac rehabilitation; (b) providing more psychological and peer support resources to address anxiety and sense of isolation; (c) disseminating information on rapidly evolving SCAD research; and (d) acknowledging and providing support to the family system.
Conclusions:
The results signal curricula to be included in tailored SCAD programming and underscore the need for further study and dissemination of optimal secondary preventative care for this patient population. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
Importance:
Spontaneous coronary artery dissection (SCAD) is a notable cause of acute coronary syndrome in women of childbearing age.
Objective:
To test the hypothesis that pregnancy after SCAD is associated with recurrent SCAD.
Design, setting, and participants:
Three study designs were implemented: a case series of women with pregnancy after SCAD; a nested case-control study comparing patients with recurrent SCAD to matched controls without recurrent SCAD; and a cohort study. Women with SCAD who were of childbearing potential and enrolled into the Mayo Clinic SCAD Registry from August 30, 2011, to April 4, 2019, were included in the study. Patients with coronary dissections associated with iatrogenesis, trauma, or atherosclerosis were not enrolled.
Exposures:
Pregnancy after SCAD.
Main outcomes and measures:
The primary outcome was SCAD recurrence, defined as an acute coronary syndrome or cardiac arrest due to new SCAD. Other demographic measures collected included age, year of SCAD occurrence, and comorbidities.
Results:
The cohort included 636 women of childbearing potential. Twenty-three of those women had a total of 32 pregnancies after SCAD. The median (interquartile range) age of women with pregnancy after SCAD was 38 years (34-40 years), and 20 (87%) were White. In the nested case-control study, 92 cases of recurrent SCAD were matched to 158 controls. There was no significant difference in exposure to subsequent pregnancies in the women with recurrent SCAD as compared with matched controls (2 of 92 [2%] vs 13 of 158 [8%]; P = .06). In the overall cohort of 636 patients, recurrent SCAD was present in 122 patients with a Kaplan-Meier 5-year SCAD recurrence estimate of 14.8%. The Cox analysis showed no significant association between subsequent pregnancy and SCAD recurrence with a nonsignificant hazard ratio of 0.38 (95% CI, 0.09-1.6) when controlling for age at first SCAD, year of first SCAD, and fibromuscular dysplasia.
Conclusions and relevance:
This study found that most women tolerated pregnancy and lactation after SCAD without evidence for increased risk of SCAD recurrence when compared with women with a history of SCAD who did not experience pregnancy. Although this study is reassuring and indicates complex contributors to SCAD recurrence, the results need to be interpreted prudently because of study selection bias and the small total number of women who became pregnant after SCAD. The notable hemodynamic changes that occur with pregnancy and severe presentation of pregnancy-associated SCAD are reasons for concern when considering pregnancy after SCAD.
Background
Coronary artery calcium (CAC) scans can help reclassify risk and guide patient‐clinician shared treatment decisions for cardiovascular disease prevention. Patients increasingly access online patient educational materials (OPEMs) to guide medical decision‐making. The American Medical Association (AMA) recommends that OPEMs should be written below a 6th‐grade reading level. This study estimated the readability of commonly accessed OPEMs on CAC scans.
Methods and Results
The terms “coronary artery calcium scan,” “heart scan,” and “CAC score” were queried using an online search engine to identify the top 50 commonly accessed websites based on order of search results on December 17, 2019. Grade‐level readability was calculated using generalized estimating equations, with observations nested within readability metrics from each website. Results were compared with AMA‐recommended readability parameters. Overall grade‐level readability among all search terms was 10.9 (95% CI, 9.3–12.5). Average grade‐level readability of OPEMs for the search terms “coronary artery calcium scan,” “heart scan,” and “CAC score,” was 10.7 (95% CI, 9.0–12.5), 10.5 (95% CI, 8.9–12.1), and 11.9 (95% CI, 10.3–13.5), respectively. Professional society and news/media/blog websites had the highest average reading grade level of 12.6, while health system websites had the lowest average reading grade level of 10.0. Less than half of the unique websites (45.3%) included explanatory images or videos.
Conclusions
Current OPEMs on CAC scans are written at a higher reading level than recommended for the general public. This may lead to patient misunderstanding, which could exacerbate disparities in cardiovascular health among groups with lower health literacy.
Objective
Cardiac disease in pregnancy is a leading cause of maternal death in high-income countries. Evidence-based guidelines to assist in planning and managing the healthcare of affected women is lacking. The objective of this research was to produce the first qualitative metasynthesis of the experiences of pregnant women with existing or acquired cardiac disease to inform improved healthcare services.
Method
We conducted a systematic search of peer-reviewed publications in five databases to investigate the decision-making processes, supportive strategies and healthcare experiences of pregnant women with existing or acquired cardiac disease, or of affected women contemplating pregnancy. Identified publications were screened for duplication and eligibility against selection criteria, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We then undertook a thematic analysis of the data relating to women’s experiences extracted from each publication to inform new healthcare practices and communication.
Results
Eleven studies from six countries were included in our meta-synthesis. Four themes were revealed. Women with congenital and acquired heart disease identified situations where they had either taken charge of decision-making, lacked control or experienced emotional uncertainty when making decisions. Some women were risk aware and determined to take care of themselves in pregnancy while others downplayed the risks. Women with heart disease acknowledged the importance of specific social support measures during pregnancy and after child birth, and reported a spectrum of healthcare experiences.
Conclusions
There is a lack of integrated and tailored healthcare services and information for women with cardiac disease in pregnancy. The experiences of women synthesised in this research has the potential to inform new evidence-based guidelines to support the decision-making needs of women with cardiac disease in pregnancy. Shared decision-making must consider communication across the clinical team. However, coordinated care is challenging due to the different specialists involved and the limited clinical evidence concerning effective approaches to managing such complex care.
Purpose:
Spontaneous coronary artery dissection (SCAD) is a nonatherosclerotic type of acute myocardial infarction that primarily affects young, healthy women without typical risk factors for heart disease. Few investigations have examined psychosocial variables in this population and none have looked at patient perceptions of the experience and stresses associated with having a SCAD event or the resources currently available to SCAD survivors. This investigation describes survivors' subjective experiences of SCAD. Participants also provided information about types and helpfulness of resources available to them post-SCAD, including cardiac rehabilitation.
Methods:
Participants were recruited online and completed a one-time questionnaire.
Results:
Participants (n = 409) completed a questionnaire concerning their experiences with their SCAD event in the 1 y and 2 wk prior to the SCAD event. Their responses reflected moderate to high perceptions of stress. Participants experienced the SCAD event as highly stressful and frightening and their heart health presents as a moderate-severe source of current, post-diagnosis stress. Spontaneous coronary artery dissection-based informational support was frequently rated as inadequate, whereas other supportive resources varied in their helpfulness and accessibility. Participants reported positive experiences in cardiac rehabilitation and strong interest in SCAD-specific, professionally led, online patient education and support groups.
Conclusions:
This study is the largest to date investigation of SCAD survivors and their experiences in this understudied and perhaps underrecognized condition. Opportunities for researchers and providers to develop, tailor, and disseminate SCAD-specific interventions are discussed.
Background
Parents of children with rare conditions increasingly use the Internet to source information on their child?s condition. This study reports on part of a larger study whose overall aim was to identify the Internet use by parents when seeking information on their child?s rare condition, with the specific purpose of using the findings to aid in the development of a website specifically designed to meet the parents? needs. It presents findings on why these parents use the Internet, the information and support content they source, and the impact these resources have on their capacity to care for and manage their child?s condition.
Objective
To (1) ascertain parents? general Internet usage patterns, (2) identify the nature of the information parents most frequently searched for, and (3) determine the effect the Internet-sourced information had on parents of children with rare conditions.
Methods
Data collection was conducted in 2 parts: Part 1 was a focus group interview (n=8) to inform the development of the questionnaire, and Part 2 was a questionnaire (Web- and paper-based). All respondents (N=128) completed the questionnaire using the Internet.
Results
Parents frequently and habitually used the Internet and social media to gather information on their child?s condition. These Web-based resources provide parents with a parent-to-parent support platform that allows them to share their experiences and information with other parents, which, the respondents considered, improved their knowledge and understanding of their child?s condition. The respondents also reported that these resources positively impacted on their decision making, care, and management of their child?s condition. However, they reported receiving mixed responses when wishing to engage and share with health care professionals their Internet and social media interactions and information outcomes.
Conclusions
This study adds to the emerging body of research on the Internet use by parents of children with rare conditions to source information on their child?s condition. The evolving and ever increasing parent-to-parent support systems via social media are impacting on parents? capacity to manage their children. Implications for practice include health care professionals? response to this knowledge and capacity shift, and the significance of these changes when interacting with parents. The key message of this study was that parents of children with rare conditions are habitual users of the Internet to source information about their children?s conditions. Social media, especially Facebook, has an increasing role in the lives of these parents for information and support. Parents? interest in information gathering and sharing includes a desire for shared dialogue with health care professionals.
Background: The importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. Nonetheless, comprehensive knowledge and information are scarce and difficult to find, especially for rare diseases. Additionally, the quality of health or medical information about rare diseases is frequently difficult to assess for the patients and their family members.
Objective: The aim of this study is to assess the quality of information on the Internet about rare diseases. Additionally, the study aims to evaluate if the quality of information on rare diseases varies between different information supplier categories.
Methods: A total of 13 quality criteria for websites providing medical information about rare diseases were transferred to a self-disclosure questionnaire. Identified providers of information on the Internet about rare diseases were invited to fill out the questionnaire. The questionnaire contained questions about the information provider in general (eg, supplier category, information category, language, use of quality certificates, and target group) and about quality aspects that reflect the 13 quality criteria. Differences in subgroup analyses were performed using t tests.
Results: We identified 693 websites containing information about rare diseases. A total of 123 questionnaires (17.7%) were completely filled out by the information suppliers. For the remaining identified suppliers (570/693, 82.3%), the questionnaires were filled out by the authors based on the information available on their website. In many cases, the quality of websites was proportionally low. Furthermore, subgroup analysis showed no statistically significant differences between the quality of information provided by support group/patient organization compared to medical institution (P=.19). The quality of information by individuals (patient/relative) was significantly lower compared to information provided by support group/patient organization (P=.001), medical institution (P=.009), and other associations and sponsoring bodies (P=.001) as well.
Conclusions: Overall, the quality of information on the Internet about rare diseases is low. Quality certificates are rarely used and important quality criteria are often not fulfilled completely. Additionally, some information categories are underrepresented (eg, information about psychosocial counseling, social-legal advice, and family planning). Nevertheless, due to the high amount of information provided by support groups, this study shows that these are extremely valuable sources of information for patients suffering from a rare disease and their relatives.
Background:
Previous research has identified exercise identity and social physique anxiety as two independent factors that are associated with exercise dependence.
Aims:
The purpose of our study was to investigate the unique and interactive effect of these two known correlates of exercise dependence in a sample of 1,766 female runners.
Methods:
Regression analyses tested the main effects of exercise identity and social physique anxiety on exercise dependence. An interaction term was calculated to examine the potential moderating effect of social physique anxiety on the exercise identity and exercise dependence relationship.
Results:
Results indicate a main effect for exercise identity and social physique anxiety on exercise dependence; and the interaction of these factors explained exercise dependence scores beyond the independent effects. Thus, social physique anxiety acted as a moderator in the exercise identity and exercise dependence relationship.
Discussion:
Our results indicate that individuals who strongly identify themselves as an exerciser and also endorse a high degree of social physique anxiety may be at risk for developing exercise dependence.
Conclusions:
Our study supports previous research which has examined factors that may contribute to the development of exercise dependence and also suggests a previously unknown moderating relationship for social physique anxiety on exercise dependence.
Background:
Internet websites and smartphone apps have become a popular resource to guide parents in their children's feeding and nutrition. Given the diverse range of websites and apps on infant feeding, the quality of information in these resources should be assessed to identify whether consumers have access to credible and reliable information.
Objective:
This systematic analysis provides perspectives on the information available about infant feeding on websites and smartphone apps.
Methods:
A systematic analysis was conducted to assess the quality, comprehensibility, suitability, and readability of websites and apps on infant feeding using a developed tool. Google and Bing were used to search for websites from Australia, while the App Store for iOS and Google Play for Android were used to search for apps. Specified key words including baby feeding, breast feeding, formula feeding and introducing solids were used to assess websites and apps addressing feeding advice. Criteria for assessing the accuracy of the content were developed using the Australian Infant Feeding Guidelines.
Results:
A total of 600 websites and 2884 apps were screened, and 44 websites and 46 apps met the selection criteria and were analyzed. Most of the websites (26/44) and apps (43/46) were noncommercial, some websites (10/44) and 1 app were commercial and there were 8 government websites; 2 apps had university endorsement. The majority of the websites and apps were rated poor quality. There were two websites that had 100% coverage of information compared to those rated as fair or poor that had low coverage. Two-thirds of the websites (65%) and almost half of the apps (47%) had a readability level above the 8th grade level.
Conclusions:
The findings of this unique analysis highlight the potential for website and app developers to merge user requirements with evidence-based content to ensure that information on infant feeding is of high quality. There are currently no apps available to consumers that address a variety of infant feeding topics. To keep up with the rapid turnover of the evolving technology, health professionals need to consider developing an app that will provide consumers with a credible and reliable source of information about infant feeding, using quality assessment tools and evidence-based content.
Objective:
Internet-delivered interventions have proven efficacious in changing people's behaviours and related determinants, but the actual use of these interventions by the target group is often very low. This article investigates whether arousing interest and enjoyment results in increased intervention use in an online context.
Design:
Invitations to visit a website about Hepatitis A, B and C virus infections (Studies 1 and 3) and the website itself (Studies 2 and 3) were manipulated to arouse interest and enjoyment.
Main outcome measures:
Intention to visit the website (Study 1), clicking on the link to visit the website (Studies 2 and 3) and the number of pages visited on the website (Study 3).
Results:
Arousing interest through an invitation resulted in a higher intention to visit the website (Study 1) and a higher likelihood of clicking on the link to visit the website in comparison with arousing enjoyment (Study 2). The number of pages visited increased when interest was aroused on the website itself (Study 3).
Conclusion:
Arousing interest is a promising strategy to increase use of Internet-delivered interventions and potentially increase the public health impact of these interventions.
the Internet is an increasingly important source of health information.
to assess how well common websites answered patients' questions regarding inflammatory bowel disease (IBD).
thirty websites were identified and evaluated. Based on a previous survey of patient information needs, a comprehensive question list was developed in the three following areas: medical information (seven items), medical treatment (six items) and selfmanagement (eight items). The websites were evaluated for the amount of information they provided to answer each question using two standard measures of information quality - the DISCERN and the Ensuring Quality Information for Patients scales.
four particularly strong websites, scoring highest (on a scale from 1 to 5) in terms of IBD information, were the Crohn's and Colitis Foundation of America (mean information score 4.3), About.com (4.2), HealthCentral (3.8) and WebMD (3.8). These websites also scored well on the DISCERN and the Ensuring Quality Information for Patients quality scales. Most websites provided at least adequate information on common symptoms, complications, treatments and what is known (or not known) about the causes of IBD. However, many websites did not provide adequate information about prognosis, possible side effects of treatment and risks of developing cancer. Information regarding self-management was covered to a very limited extent.
websites could be strengthened by providing more of the information patients deem to be important, and by more clearly identifying sources of information and the date the information was updated. Most websites would benefit from more attention given to reducing the reading level and improving the organization of material.
The success of the treatment in patients with retinopathy of prematurity (ROP) is mainly associated with timely diagnosis and appropriate management. Information dissemination is crucial for the outcome of ROP. This study aimed to evaluate the quality of the information about ROP available for patients on the internet.
Cross sectional study. In March 2004 the ROP information available on the internet was evaluated using two search engines (MetaCrawler and MSN) and four key terms ("retinopathy of prematurity," "premature eye," "premature retina," and "ROP"). The quality of each website was evaluated using a score system. The sites were classified as academic, organisational, or commercial. Readability, general quality of the website (based on ownership, purpose, authorship, author qualification, attribution, interactivity, and currency), and quality of the content specific to ROP (definition, causes, epidemiology, risk factors, diagnosis, classification, treatment, and prognosis) were analysed.
Of 114 websites evaluated, 40 were included. 10 sites (25.0%) were academic, eight (20.0%) organisational, and 22 (55.0%) commercial. In the majority of the sites (62.5%) the ROP information was fair or poor.
A large amount of information about ROP is available on the internet. However, most websites were considered incomplete.
Background:
The recommended readability of online health education materials is at or below the sixth- to eighth-grade level. Nevertheless, more than a decade of research has demonstrated that most online education materials pertaining to orthopaedic surgery do not meet these recommendations. The repeated evidence of this limited progress underscores that unaddressed barriers exist to improving readability, such as the added time and cost associated with writing easily readable materials that cover complex topics. Freely available artificial intelligence (AI) platforms might facilitate the conversion of patient-education materials at scale, but to our knowledge, this has not been evaluated in orthopaedic surgery.
Questions/purposes:
(1) Can a freely available AI dialogue platform rewrite orthopaedic patient education materials to reduce the required reading skill level from the high-school level to the sixth-grade level (which is approximately the median reading level in the United States)? (2) Were the converted materials accurate, and did they retain sufficient content detail to be informative as education materials for patients?
Methods:
Descriptions of lumbar disc herniation, scoliosis, and spinal stenosis, as well as TKA and THA, were identified from educational materials published online by orthopaedic surgery specialty organizations and leading orthopaedic institutions. The descriptions were entered into an AI dialogue platform with the prompt "translate to fifth-grade reading level" to convert each group of text at or below the sixth-grade reading level. The fifth-grade reading level was selected to account for potential variation in how readability is defined by the AI platform, given that there are several widely used preexisting methods for defining readability levels. The Flesch Reading Ease score and Flesch-Kincaid grade level were determined for each description before and after AI conversion. The time to convert was also recorded. Each education material and its respective conversion was reviewed for factual inaccuracies, and each conversion was reviewed for its retention of sufficient detail for intended use as a patient education document.
Results:
As presented to the public, the current descriptions of herniated lumbar disc, scoliosis, and stenosis had median (range) Flesch-Kincaid grade levels of 9.5 (9.1 to 10.5), 12.6 (10.8 to 15), and 10.9 (8 to 13.6), respectively. After conversion by the AI dialogue platform, the median Flesch-Kincaid grade level scores for herniated lumbar disc, scoliosis, and stenosis were 5.0 (3.3 to 8.2), 5.6 (4.1 to 7.3), and 6.9 (5 to 7.8), respectively. Similarly, descriptions of TKA and THA improved from 12.0 (11.2 to 13.5) to 6.3 (5.8 to 7.6) and from 11.6 (9.5 to 12.6) to 6.1 (5.4 to 7.1), respectively. The Flesch Reading Ease scores followed a similar trend. Seconds per sentence conversion was median 4.5 (3.3 to 4.9) and 4.5 (3.5 to 4.8) for spine conditions and arthroplasty, respectively. Evaluation of the materials that were converted for ease of reading still provided a sufficient level of nuance for patient education, and no factual errors or inaccuracies were identified.
Conclusion:
We found that a freely available AI dialogue platform can improve the reading accessibility of orthopaedic surgery online patient education materials to recommended levels quickly and effectively. Professional organizations and practices should determine whether their patient education materials exceed current recommended reading levels by using widely available measurement tools, and then apply an AI dialogue platform to facilitate converting their materials to more accessible levels if needed. Additional research is needed to determine whether this technology can be applied to additional materials meant to inform patients, such as surgical consent documents or postoperative instructions, and whether the methods presented here are applicable to non-English language materials.
Background:
Mild cognitive impairment (MCI) has been reported after acute coronary syndrome (ACS), but it is uncertain who is at risk, particularly during inpatient admission.
Objective:
In this study, we aimed to explore the prevalence and cognitive domains affected in MCI during ACS admission and determine factors that identify patients most at risk of MCI.
Methods:
Inpatients with ACS were consecutively recruited from 2 tertiary hospital cardiac wards and screened with the Montreal Cognitive Assessment and the Hopkins Verbal Learning Test. Screening included health literacy (Newest Vital Sign), depressive symptoms (Patient Health Questionnaire-9), and physical activity (Physical Activity Scale for the Elderly). Factors associated with MCI were determined using logistic regression.
Results:
Participants (n = 81) had a mean (SD) age of 63.5 (10.9) years, and 82.7% were male. In total, MCI was identified in 52.5%, 42.5% with 1 screen and 10% with both. Individually, the Montreal Cognitive Assessment identified MCI in 48.1%, and the Hopkins Verbal Learning Test identified MCI in 13.8%. In Montreal Cognitive Assessment screening, the cognitive domains in which participants most frequently did not achieve the maximum points available were delayed recall (81.5%), visuospatial executive function (48.1%), and attention (30.9%). Accounting for education, depression, physical activity, and ACS diagnosis, the likelihood of an MCI positive screen increased by 11% per year of age (odds ratio, 1.11; 95% confidence interval, 1.04-1.18) and by 3.6 times for those who are unmarried/unpartnered (odds ratio, 3.61; 95% confidence interval, 1.09-11.89).
Conclusion:
An estimated half of patients with ACS screen positive for MCI during admission, with single and older patients most at risk. Multiple areas of thinking were affected with potential impact on capacity for learning heart disease management.
Background:
As patients seek online health information to supplement their medical decision-making, the aim of this study is to assess the quality and readability of internet information on the left ventricular assist device (LVAD).
Methods:
Three online search engines (Google, Bing, and Yahoo) were searched for "LVAD" and "Left ventricular assist device". Included websites were classified as academic, foundation/advocacy, hospital-affiliated, commercial, or unspecified. The quality of information was assessed using the JAMA benchmark criteria (0-4), DISCERN tool (16-80), and presence of Health On the Net code (HONcode) accreditation. Readability was assessed using the Flesch Reading Ease score.
Results:
38 unique websites were included. The average JAMA and DISCERN scores of all websites were 0.82 ± 1.11 and 52.45 ± 13.51, respectively. Academic sites had a significantly lower JAMA mean score than commercial (p<0.001) and unspecified (p<0.001) websites, as well as a significantly lower DISCERN mean score than commercial sites (p=0.002). HONcode certification was present in 6 (15%) websites analyzed, which had significantly higher JAMA (p<0.001) and DISCERN (p<0.016) mean scores than sites without HONcode certification. Readability was fairly difficult and at the level of high school students.
Conclusions:
The quality of online information on the LVAD is variable, and overall readability exceeds the recommended level for the public. Patients accessing online information on the LVAD should be referred to sites with HONcode accreditation. Academic institutions must provide higher quality online patient literature on LVADs.
Funding Acknowledgements
Type of funding sources: Public Institution(s). Main funding source(s): Edinburgh Napier University
Introduction
Spontaneous coronary artery dissection (SCAD) is increasingly recognised as an important cause of myocardial infarction, particularly among women. SCAD survivors may not know what physical activity is safe and effective and there may be a psychosocial burden of living with a SCAD diagnosis. This review aimed to determine the evidence regarding physical activity, cardiovascular risk factors, or associated factors, and the psychosocial impact of SCAD for SCAD survivors after hospital discharge.
Methods
A systematic review completed in accordance with PRISMA guidelines
Results
The review included 28 studies. These used a range of methods. None were randomised controlled trials. There were 4167 SCAD participants although some were sourced from the same SCAD registries, so may not be unique. They were mainly female (n=3897 93.5%, range=57.7%-100%), with mean age 48.0±9.8 years at index event. Participants mostly came from the USA, Canada, or the Netherlands. We found very limited evidence for cardiorespiratory fitness improvements following cardiac rehabilitation (CR). Existing CR was not tailored to SCAD specific needs and SCAD survivors lacked guidance about appropriate physical activity. Some participants had high levels of psychosocial distress. SCAD survivors highlighted the need for tailored support that included family members. Many SCAD survivors have traditional risk factors including hypertension, hyperlipidaemia and overweight/obesity. Chest pain following SCAD is common.
Conclusions
There is an urgent need to develop physical and psychological recovery programmes for SCAD survivors, and test effectiveness via randomised controlled trials. Psychosocial support is particularly required, given the high burden of psychosocial issues.
Mothers' social integration with other mothers in the same residential area has been shown to be beneficial for their health and well-being. The socio-psychological resources afforded by other mothers aid the transition to motherhood. However, much less is known about the processes whereby mothers integrate with other local mothers. Therefore, we analysed first-time mothers' experiences of social integration with other mothers in the same neighbourhood. Through three waves of semi-structured interviews, we followed eight Finnish first-time mothers' everyday lives for a year. The narrative analysis of these longitudinal interviews revealed three story types – social integration, social exclusion and social disconnection – that depicted mothers' different experiences of integration with other local mothers. The perceived similarity of experiences, goals and interests related to motherhood enhanced the development of a shared sense of identity and supported integration with other local mothers. We discuss our findings in relation to the social identity model of identity change (SIMIC).
Rationale Patients with pulmonary arterial hypertension (PAH) or their caregivers may seek information about their disease online, but the accuracy and quality of websites on PAH is not known. Objectives To assess the quality, reliability and accuracy of information on websites about PAH. Methods We searched Google, Yahoo, and Bing for "pulmonary arterial hypertension" and screened the first 200 sites from each search engine. Website quality was evaluated by two authors using the validated DISCERN tool (best score is 80) and JAMA benchmark criteria (best score is 4). Content accuracy was assessed according to 39 pre-specified disease-relevant topics from international PAH guidelines. Linear regression models and generalized estimating equations were used to assess the association between website characteristics with JAMA benchmark criteria, DISCERN scores and content scores. Results One-hundred-seventeen eligible sites were included (50% scientific organizations, 20% foundation/advocacy organizations, 14% industry/for-profit, 12% personal commentary/blogs, 4% news and media sites) with most sites hosted in North America. The median time since last website update was 1.2 years (IQR 0.4-2.6). Website readability was at the high school or college education-level (Flesh Reading Ease score 39.9±15.2, reading grade 11.9±2.7), which is more challenging than the recommendation by the American Medical Association for patient medical information to be written at 5th-6th grade levels. Only 23% had Health on the Net Code of Conduct (HONcode) certification for ethical presentation of healthcare information. Median DISCERN total score and JAMA Benchmark score were 1.5 (IQR 0.5-2.5) and 29.5 (IQR 22.5-35.5), respectively, indicating poor transparency, reliability, and quality of information. Foundation/advocacy organization sites had higher DISCERN scores compared to personal commentary/blog sites and higher content scores compared to industry/for-profit sites. Websites with HONcode certification were more reliable and had higher JAMA benchmark scores. A minority of websites addressed exercise/rehabilitation, palliative care, pregnancy, and financial concerns relevant to patients. Conclusions Most internet websites on PAH were not easily readable, comprehensive, or transparent. Using a systematic appraisal approach, we identified the highest-quality internet websites with balanced and accurate coverage of relevant issues and treatment options for patients with PAH, which may be useful for patients, caregivers, and clinicians.
Introduction: Spontaneous coronary artery dissection (SCAD) is a cause of non-atherosclerotic acute coronary syndrome and sudden cardiac death that predominantly impacts young and middle-aged women. In addition to the challenges of acute SCAD including arrhythmias, heart failure, and recurrent chest pain, de novo recurrent SCAD occurs in 5–29% of patients. Recurrent SCAD presents both a psychological burden and a significant cardiac risk to patients. Research regarding SCAD recurrence risk has been growing and can guide providers and patients alike.
Areas covered: This review provides up-to-date information about many aspects of SCAD with a focus on SCAD recurrence. PubMed articles were reviewed through October 2020, with particular focus on clinical studies and original research. The resulting literature was scrutinized for information on SCAD recurrence. SCAD-associated conditions, genetic data, clinical characteristics, medications, and aspects of post-SCAD care are summarized.
Expert Opinion: SCAD recurrence poses a concerning risk for patients with SCAD. Conditions such as hypertension and severe coronary tortuosity may be associated with recurrence. More research is needed to further elucidate risk factors for recurrence and clarify interventions, such as beta blocker therapy, that may reduce recurrence risk.
Rural cancer patients have inferior cancer outcomes and unique unmet information needs. This paper explores the value of rural people affected by cancer delivering cancer-related education and support to their peers via 3–5 min online YouTube films. In part 1, 14 rural Australians affected by cancer (10 survivors, 4 carers), 50% (7/14) female, 55–79 years, "storytellers", were purposively invited to be filmed sharing their cancer-related experience and advice for others facing similar challenges. They then reflected on their storytelling experience during semi-structured interviews with an independent researcher. In part 2, 11 rural South Australians affected by cancer (8 survivors, 3 carers), 82% (9/11) female, 32–75 years, "viewers", who had watched at least three of the videos, were interviewed. When data saturation was reached, thematic analysis was employed. Storytellers were found to be highly satisfied with the film-making process and product. They valued rapport building prior to filming and the opportunity to help others. They also found storytelling cathartic and the films useful in communicating their cancer experience to family and friends. Rural viewers appreciated the honesty, authenticity, relatability and believability of the storytellers, the practical advice on rural-specific psychosocial issues, acknowledgment of the impact of isolation and the opportunity to understand others’ cancer experiences. The film’s short duration and professional film-making added appeal. Inclusion of younger storytellers and methods of delivery other than YouTube were suggested. This study highlights the value of this approach for storytellers and viewers. It may be particularly beneficial for isolated rural cancer survivors who feel that their unique challenges are not adequately addressed by mainstream cancer education resources However, further quantitative research to test acceptability and impact in representative rural samples is required.
Due to their unique demographic, cardiovascular, and psychologic profile, experts recommend that patients with spontaneous coronary artery dissection (SCAD) obtain tailored secondary preventative care. There is a need to glean perspectives from a diverse range of health care providers (eg, cardiology, general practice, and allied health) to supplement existing scientific statements and to delineate providers' current approaches for delivering care. This study qualitatively investigated health care providers' current practices, challenges, and recommendations for delivering secondary preventative care to patients with SCAD. Health care providers (n = 15) from a large cardiac health centre in Canada participated in individual semistructured interviews, which were analyzed with the use of inductive thematic coding techniques. Qualitative data revealed that participants recommend tailored cardiac rehabilitation, acknowledging the "uniqueness" of SCAD, offering provider-facilitated informational and peer support programming, increasing access to psychologic support throughout recovery, and enhancing health care provider education about SCAD. Limited psychologic resources, feasibility of sustaining programs with a small patient population, restrictive thresholds for physical activity, and reassuring patients amid scant evidence-based approaches were cited as major challenges to providing optimal care to patients after SCAD. In conclusion, participants suggest that tailored secondary prevention programming that acknowledges and targets the unique exercise, psychologic, and peer support needs of patients with SCAD, as well as increased education for health care providers, may be integral to promote patients in their recovery.
Background
Minimising risk factors through secondary prevention behaviour is challenging for patients following an acute coronary syndrome. Cognitive impairment can potentially make these changes more difficult. However, cognitive impairment prevalence in acute coronary syndrome patients is poorly understood.
Design
This study was based on a systematic review.
Methods
A systematic review was conducted of PubMed, Medline, PsycINFO and Cochrane databases up to March 2019, to identify studies reporting the prevalence of cognitive impairment in acute coronary syndrome patients. Predefined inclusion criteria were specified, including use of a validated cognitive impairment screening tool. Studies were excluded if patients had diagnosed dementia or coronary artery bypass graft surgery. Strengthening The Reporting of Observational Studies in Epidemiology and Cochrane Risk of Bias tools were used to assess quality.
Results
From 747 potential studies, nine were included. The total sample size was 6457 (range 53–2174), mean age range was 51.3–77.4 years, and range of proportions of males was 57–100%. Reported cognitive impairment prevalence rates varied substantially (9–85%) with no clear pattern over time. From the two studies which examined domains, verbal fluency, memory and language were affected the most. Meta-analysis could not be undertaken due to diverse screening tools ( n = 9), cut-off scores and screening timepoints.
Conclusions
Cognitive impairment in acute coronary syndrome patients is currently poorly described, and likely affects a substantial number of acute coronary syndrome patients who remain undetected and have the potential to develop to dementia in the future. As domains are most affected, this could impact understanding and retention of health education. Research is needed to accurately determine the prevalence of cognitive impairment in acute coronary syndrome patients and create suitable standardised measures and thresholds.
Purpose:
High rates of depression and anxiety are reported among patients who have experienced spontaneous coronary artery dissection (SCAD) but the incidence of post-traumatic stress disorder (PTSD) is unknown. The purpose of this study was to investigate symptoms of PTSD in women who have experienced SCAD.
Methods:
This cross-sectional pilot study included 14 female SCAD patients, mean age of 51 yr, who responded to standardized psychosocial questionnaires at a median of 35 mo post-SCAD. Patients were identified by cardiologists as having had a SCAD event and were concurrently invited to participate in a psychosocial group for SCAD survivors.
Results:
Participants reported current symptoms of stress (93%), insomnia (57%), anxiety (71%), depression (36%), and PTSD (43%). Eight of the 11 women who reported having a mental health history (72.7%) indicated that their symptoms were related to having experienced SCAD. Health-related quality of life and social support were comparable with other all-female cardiac samples. Patterns of perceived control were more similar to those of patients with cancer than other cardiac patients in that SCAD patients ranked "chance" as more likely than "self-control" to impact medical outcomes.
Conclusions:
The prevalence of PTSD symptoms in this first-known assessment of post-traumatic stress among SCAD patients is concerning. The unexpected nature of SCAD and lack of known treatment options may play a role in patient distress. Future research is needed to accurately estimate rates of PTSD after SCAD and assess the benefits of treatment.
Spontaneous coronary artery dissection (SCAD) has emerged as an important cause of acute coronary syndrome, myocardial infarction, and sudden death, particularly among young women and individuals with few conventional atherosclerotic risk factors. Patient-initiated research has spurred increased awareness of SCAD, and improved diagnostic capabilities and findings from large case series have led to changes in approaches to initial and long-term management and increasing evidence that SCAD not only is more common than previously believed but also must be evaluated and treated differently from atherosclerotic myocardial infarction. High rates of recurrent SCAD; its association with female sex, pregnancy, and physical and emotional stress triggers; and concurrent systemic arteriopathies, particularly fibromuscular dysplasia, highlight the differences in clinical characteristics of SCAD compared with atherosclerotic disease. Recent insights into the causes of, clinical course of, treatment options for, outcomes of, and associated conditions of SCAD and the many persistent knowledge gaps are presented.
Objective
A sedentary lifestyle has been associated with mental health disorders. Many medical conditions result in the cessation of exercise, which may increase the risk of developing mental health problems. The purpose of this article is to systematically review the literature examining the effects of exercise withdrawal on mental health.
Method
Literature was searched using PubMed, PsycINFO, and SPORTdiscus for studies that experimentally manipulated the withdrawal of exercise and included mental health as outcome measure.
Results
A total of 19 studies met inclusion criteria (total N = 689 with 385 individuals participating in an exercise withdrawal condition). Exercise withdrawal consistently resulted in increases in depressive symptoms and anxiety. Other mental health outcomes were investigated infrequently. Severe mental health issues requiring clinical intervention after experimentally controlled exercise withdrawal was rare. Heterogeneity in methods and outcomes was observed, especially in terms of the duration of exercise withdrawal (range 1 to 42 days, median = 7 days), with stronger effects if exercise withdrawal exceeded 2 weeks.
Conclusion
Experimentally controlled exercise withdrawal has adverse consequences for mental health. These observations in healthy individuals may help to understand the onset of mental health problems in response to acute and chronic medical conditions associated with reduced physical activity. Future research is needed to investigate potential mechanisms explaining the adverse mental health consequences of cessation of exercise that will provide new targets for clinical interventions.
Background:
Spontaneous coronary artery dissection (SCAD) is an important cause of myocardial infarction in women, but the role of rehabilitation after SCAD is unclear.
Methods:
We designed a dedicated SCAD cardiac rehabilitation (SCAD-CR) program for our SCAD survivors at Vancouver General Hospital. This program encompasses a multidisciplinary approach including exercise rehabilitation, psychosocial counselling, dietary and cardiovascular disease education, and peer group support. Exercise and educational classes were scheduled weekly with a targeted participation of 6 months. Psychosocial counselling, mindful living sessions, social worker and psychiatry evaluations, and peer-group support were offered.
Results:
We report our first consecutive cohort of 70 SCAD women who joined SCAD-CR from November 2011 to April 2015. The average age was 52.3 ± 8.4 years. Mean participation duration was 12.4 ± 10.5 weeks; 28 completed 6 months, 48 completed ≥ 1 month. At entry, 44 (62.9%) had recurrent chest pains and average metabolic equivalents on exercise treadmill test was 10.1 ± 3.3. At program exit, the proportion with recurrent chest pains was lower (37.1%) and average metabolic equivalents was higher 11.5 ± 3.5 (both P < 0.001). There was a significant improvement in the STOP-D depression questionnaire, with mean scores of 13.0 ± 1.4 before and 8.0 ± 1.7 after the SCAD-CR (P = 0.046). Twenty (28.6%) social worker referrals and 19 (27.1%) psychiatry referrals were made. Mean follow-up was 3.8 ± 2.9 years from the presenting SCAD event, and the major cardiac adverse event rate was 4.3%, lower than our non-SCAD-CR cohort (n = 145; 26.2%; P < 0.001).
Conclusions:
This is the first dedicated SCAD-CR program to address the unique exercise and psychosocial needs of SCAD survivors. Our program appears safe and beneficial in improving chest pain, exercise capacity, psychosocial well-being and cardiovascular events.
This study was designed to investigate experiences of maintaining and dropping out of a gym-based exercise programme. Interviews were carried out with 14 people, aged 19–32 years, comprising seven men and two women who had maintained their gym membership and three women and two men who had not. Member validation interviews were conducted 20 months later with one man who was previously maintaining but had since dropped out, and one woman originally not maintaining who had at the time of validation been maintaining for three months. Data were analysed using interpretative phenomenological analysis, highlighting five themes. Upward social comparisons, gym culture and exercise habit were discussed by both adherers and non-adherers. The different ways the participants experienced these themes led to different outcomes in exercise status. Adherers discussed exercise dependency in relation to the meaning of the gym and their long-term commitment. Loss of social support contributed to dropout. The role of gender was highlighted with particular relevance to social comparison, culture and social support. Participants described a masculine gym culture, which produced contrasting effects on adherence. Upward social comparisons and lack of social support impacted negatively on adherence in females with poor body satisfaction. This is the first study to investigate qualitatively exercise adherence in males and females who have both adhered to and dropped out of an exercise programme. It identifies themes that have previously received little or no attention in the adherence field and results have implications for our understanding of factors influencing adherence to gym-based exercise programmes in men and women.
Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
a growing concern has emerged for the quality of health-related documents contained on the World Wide Web. Increased use of the World Wide Web by consumers and health education professionals, as well as ease of Web page publication, has heightened the need for criteria in Web page construction and evaluation. This article reviews and discusses elements to consider in Web page construction and evaluation, and provides a form to assist in assessment.
To evaluate the quality of websites providing cluster headache information for patients and healthcare providers.
The Internet has become an increasingly important source of healthcare information. However, limited data exist regarding the quality of websites providing headache information.
This was a cross-sectional study conducted in February 2007. Websites providing cluster headache information were determined on the search engine MetaCrawler and classified as either patient oriented or healthcare provider oriented. The overall quality of each site was evaluated using a score system. Readability was evaluated using the Flesch-Kincaid Grade Level Readability Score (FKRS). Website quality was analyzed based on ownership, purpose, authorship, author qualifications, attribution, interactivity, and currency. The technical quality of the cluster headache information was analyzed based on content specific to cluster headache. The final ranking, based on the sum of the ranks of all 3 categories, was determined and then contrasted between the patient-oriented and healthcare professional-oriented websites using 2-sample t-tests.
Of the first 40 websites found on MetaCrawler, 72.5% were advertisements, unrelated to headache, or repeated websites. Although the standard US writing averages are at a seventh to eighth grade level, the mean FKRS of all sites was at a 12th grade level of difficulty, with no significant difference between the patient-oriented or healthcare provider-oriented websites (P = .54). Of a total possible 14 points, the overall mean quality component score was 9.9 for all sites; and of a total possible 23 points, the overall mean technical component score was 13.9. There was no significant difference for either the quality or technical component scores between patient-oriented or healthcare provider-oriented websites (P = .45 and P = .80, respectively).
There are numerous cluster headache websites that can be found on the Internet. The quality of most of the websites dedicated to cluster headache is mediocre, and although there are some excellent cluster headache websites, these sites may be challenging for many users to locate. There was no significant difference in the overall quality of websites oriented for patients or healthcare providers providing cluster headache information evaluated in this study. In addition, websites providing high-quality cluster headache information are written at an educational level too high for a significant portion of the general population to fully utilize. Physicians should strongly consider providing lists of quality websites on cluster headache for their patients.
Spontaneous Coronary Artery Dissection: JACC State-of-the-Art Review
- Hayes
Health information: are you getting your message across?
- Gursul