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Feed: JOURNAL OF MEDICAL INTERNET RESEARCH
JMIR (ISSN: 1438-8871) is the leading Open Access journal for eHealth and healthcare in the Internet age
Information-Seeking at a Caregiving Website: A Qualitative Analysis
Background: The Internet is widely used for health information, yet little is known about the online activity of family caregivers of elders, a rapidly growing group. In order to better understand the online information-seeking activity of “e-caregivers” and other visitors at a caregiving website, we undertook a qualitative analysis of survey data from a website marketed as a comprehensive resource for adults caring for aging parents. Objective: The objectives were to better understand what types of information are sought by those visiting a website focused on elder-care issues and to identify overarching themes that might inform future development of Internet resources related to caregiving and aging. Methods: From March 2008 to MarcFrom March 2008 to March 2009, a 5-question pop-up survey was offered 9662 times and completed 2161 times. For 1838 respondents, included was a free text answer to the question "What were you looking for?” and 1467 offered relevant and detailed responses. The survey also asked about satisfaction with the site, gender of the respondent, and relationship to the individual being cared for. Content analysis was used to develop a coding dictionary, to code responses into information-seeking categories, and to identify overarching themes. Results: Of the respondents (76% of whom were female), 50% indicated they were caring for parents, 17% for themselves only, and 31% for others. Over half (57%) reported finding what they were looking for, and 46% stated they were extremely likely to recommend the website. Frequently mentioned information-seeking categories included “health information,” “practical caregiving,” and “support.” Respondents also requested information related to housing, legal, insurance, and financial issues. Many responses referred to multiple comorbid conditions and complex caregiving situations. Overarching themes included (1) a desire for assistance with a wide range of practical skills and information and (2) help interpreting symptoms and behavior, such as knowing what life impacts to expect over the course of a health condition or treatment. Conclusions: Visitors to a website targeting adults caring for aging parents reported seeking both general information on caregiving and specific assistance with the complex custodial, medical, emotional, and financial aspects of caregiving. Visitors requested both information to build caregiving skills as well as assistance in interpreting and knowing what to expect from symptoms, health conditions, and changes in behavior and relationships. Many desired communication with and support from other caregivers. Health care providers and eHealth developers should expect that many caregivers of elders are using the Internet as a resource. Further research and development is needed to fully realize the Internet’s potential for education and support of caregivers.
Associations of Internet Website Use With Weight Change in a Long-term Weight Loss Maintenance Program
Background: The Weight Loss Maintenance Trial (WLM) compared two long-term weight-maintenance interventions, a personal contact arm and an Internet arm, with a no-treatment control after an initial six-month Phase I weight loss program. The Internet arm focused on use of an interactive website for support of long-term weight maintenance. There is limited information about patterns of website use and specific components of an interactive website that might help promote maintenance of weight loss. Objective: This paper presents a secondary analysis of the subset of participants in the Internet arm and focuses on website use patterns and features associated with long-term weight maintenance. Methods: Adults at risk for cardiovascular disease (CVD) who lost at least 4 kilograms in an initial 20-week group-based, behavioral weight-loss program were trained to use an interactive website for weight loss maintenance. Of the 348 participants, 37% were male and 38% were African American. Mean weight loss was 8.6 kilograms. Participants were encouraged to log in at least weekly and enter a current weight for the 30-month study period. The website contained features that encouraged setting short-term goals, creating action plans, and reinforcing self-management habits. The website also included motivational modules, daily tips, and tailored messages. Based on log-in and weight-entry frequency, we divided participants into three website use categories: consistent, some, and minimal. Results: Participants in the consistent user group (n = 212) were more likely to be older (P = .002), other than African American (P = .02), and more educated (P = .01). While there was no significant difference between website use categories in the amount of Phase I change in body weight (P = .45) or income (P = .78), minimal website users (n = 75) were significantly more likely to have attended fewer Phase I sessions (P = .001) and had a higher initial body mass index (BMI) (P < .001). After adjusting for baseline characteristics including initial BMI, variables most associated with less weight regain included: number of log-ins (P = .001), minutes on the website (P < .001), number of weight entries (P = .002), number of exercise entries (P < .001), and sessions with additional use of website features after weight entry (P = .002). Conclusion: Participants defined as consistent website users of an interactive behavioral website designed to promote maintenance of weight loss were more successful at maintaining long-term weight loss. Trial Registration: NCT00054925; http://clinicaltrials.gov/ct2/show/NCT00054925 (Archived by WebCite at http://www.webcitation.org/5rC7523ue)
Get Your Paws off of My Pixels: Personal Identity and Avatars as Self
There is an astounding silence in the peer-reviewed literature regarding what rights a person ought to expect to retain when being represented by an avatar rather than a biological body. Before one can have meaningful ethical discussions about informed consent in virtual worlds, avatar bodily integrity, and so on, the status of avatars vis-à-vis the self must first be decided. We argue that as another manifestation of the individual, an individual’s avatar should have rights analogous to those of a biological body. Our strategy will be to show that (1) possessing a physical body is not a necessary condition for possessing rights; (2) rights are already extended to representations of a person to which no biological consciousness is attached; and (3) when imbued with intentionality, some prostheses become “self.” We will then argue that avatars meet all of the conditions necessary to be protected by rights similar to those enjoyed by a biological body. The structure of our argument will take the form of a conditional. We will argue that if a user considers an avatar an extension of the self, then the avatar has rights analogous to the rights of the user. Finally, we will discuss and resolve some of the objections to our position including conflicts that may arise when more than one individual considers an avatar to be part of the self.
A Review of Online Evidence-based Practice Point-of-Care Information Summary Providers
Background: Busy clinicians need easy access to evidence-based information to inform their clinical practice. Publishers and organizations have designed specific tools to meet doctors’ needs at the point of care. Objective: The aim of this study was to describe online point-of-care summaries and evaluate their breadth, content development, and editorial policy against their claims of being “evidence-based.” Methods: We searched Medline, Google, librarian association websites, and information conference proceedings from January to December 2008. We included English Web-based point-of-care summaries designed to deliver predigested, rapidly accessible, comprehensive, periodically updated, evidence-based information to clinicians. Two investigators independently extracted data on the general characteristics and content presentation of summaries. We assessed and ranked point-of-care products according to: (1) coverage (volume) of medical conditions, (2) editorial quality, and (3) evidence-based methodology. We explored how these factors were associated. Results: We retrieved 30 eligible summaries. Of these products, 18 met our inclusion criteria and were qualitatively described, and 16 provided sufficient data for quantitative evaluation. The median volume of medical conditions covered was 80.6% (interquartile range, 68.9% - 84.2%) and varied for the different products. Similarly, differences emerged for editorial policy (median 8.0, interquartile range 5.8 - 10.3) and evidence-based methodology scores (median 10.0, interquartile range 1.0 - 12.8) on a 15-point scale. None of these dimensions turned out to be significantly associated with the other dimensions (editorial quality and volume, Spearman rank correlation r = -0.001, P = .99; evidence-based methodology and volume, r = -0.19, P = .48; editorial and evidence-based methodology, r = 0.43, P =.09). Conclusions: Publishers are moving to develop point-of-care summary products. Some of these have better profiles than others, and there is room for improved reporting of the strengths and weaknesses of these products.
Clinician Search Behaviors May Be Influenced by Search Engine Design
Background: Searching the Web for documents using information retrieval systems plays an important part in clinicians’ practice of evidence-based medicine. While much research focuses on the design of methods to retrieve documents, there has been little examination of the way different search engine capabilities influence clinician search behaviors. Objective: Previous studies have shown that use of task-based search engines allows for faster searches with no loss of decision accuracy compared with resource-based engines. We hypothesized that changes in search behaviors may explain these differences. Methods: In all, 75 clinicians (44 doctors and 31 clinical nurse consultants) were randomized to use either a resource-based or a task-based version of a clinical information retrieval system to answer questions about 8 clinical scenarios in a controlled setting in a university computer laboratory. Clinicians using the resource-based system could select 1 of 6 resources, such as PubMed; clinicians using the task-based system could select 1 of 6 clinical tasks, such as diagnosis. Clinicians in both systems could reformulate search queries. System logs unobtrusively capturing clinicians’ interactions with the systems were coded and analyzed for clinicians’ search actions and query reformulation strategies. Results: The most frequent search action of clinicians using the resource-based system was to explore a new resource with the same query, that is, these clinicians exhibited a “breadth-first” search behaviour. Of 1398 search actions, clinicians using the resource-based system conducted 401 (28.7%, 95% confidence interval [CI] 26.37-31.11) in this way. In contrast, the majority of clinicians using the task-based system exhibited a “depth-first” search behavior in which they reformulated query keywords while keeping to the same task profiles. Of 585 search actions conducted by clinicians using the task-based system, 379 (64.8%, 95% CI 60.83-68.55) were conducted in this way. Conclusions: This study provides evidence that different search engine designs are associated with different user search behaviors.
Preventing the Obesity Epidemic by Second Generation Tailored Health Communication: An Interdisciplinary Review
Background: The prevention of obesity and health concerns related to obesity are major challenges worldwide. The use of eHealth communication and the tailoring of information delivered via the Internet at the individual level may increase the effectiveness of interventions. Mastering behaviors related to nutrition, physical activity, and weight management are the main issues in preventing obesity, and the need for interdisciplinary knowledge within this area is obvious. Objective: The objectives were to review the literature on tailored health communication and to present an interdisciplinary analysis of studies on “second” generation tailored interventions aimed at behavior change in nutrition, physical activity, or weight management. Methods: A literature search was conducted of the main electronic information sources on health communication. Selection criteria were defined, and 23 intervention studies were selected. The content analysis focused on the following: study designs, objectives of behavior change, target groups, sample sizes, study lengths, attrition rates, theories applied, intervention designs, computer-based channels used, statistically significant outcomes from the perspective of tailoring, and possible biases of the studies. However, this was not a structured meta-analysis and cannot be replicated as such. Results: Of the 23 studies, 21 were randomized controlled trials, and all focused on behavior change: 10 studies focused on behavior change in nutrition, 7 on physical activity, 2 on nutrition and physical activity, and 4 on weight management. The target groups and the number of participants varied: 8 studies included more than 500 participants, and 6 studies included less than 100. Most studies were short; the duration of 20 studies was 6 months or less. The Transtheoretical Model was applied in 14 of the 23 studies, and feedback as a tailoring mechanism was used in addition to an Internet site (or program) in 15 studies and in addition to email in 11 studies. Self-reporting was used in 15 studies, and 14 studies did not have a no-information control group. Tailoring was more effective in nutrition interventions than in physical activity and weight management interventions. The outcomes were mixed or negative in 4 studies of physical activity interventions and in 3 studies of weight management. The use of a no-information control group seemed to have been linked to statistically significant between-group effects in measuring physical activity. This bias effect related to intervention design may explain the differences in the outcomes of the physical activity studies. Conclusions: Tailoring was shown to have been an effective method in nutrition interventions, but the results for physical activity were mixed, which is in line with previous studies. Nevertheless, the effect of possible biases, such as relying solely on self-reports and on intervention design without a no-information control group, should not be underestimated. Thus, the issue of bias merits more attention in planning interventions and in future meta-analyses.
Effectiveness of Web-based Interventions on Patient Empowerment: A Systematic Review and Meta-analysis
Background: Patient empowerment is growing in popularity and application. Due to the increasing possibilities of the Internet and eHealth, many initiatives that are aimed at empowering patients are delivered online. Objective: Our objective was to evaluate whether Web-based interventions are effective in increasing patient empowerment compared with usual care or face-to-face interventions. Methods: We performed a systematic review by searching the MEDLINE, EMBASE, and PsycINFO databases from January 1985 to January 2009 for relevant citations. From the 7096 unique citations retrieved from the search strategy, we included 14 randomized controlled trials (RCTs) that met all inclusion criteria. Pairs of review authors assessed the methodological quality of the obtained studies using the Downs and Black checklist. A meta-analysis was performed on studies that measured comparable outcomes. The GRADE approach was used to determine the level of evidence for each outcome. Results: In comparison with usual care or no care, Web-based interventions had a significant positive effect on empowerment measured with the Diabetes Empowerment Scale (2 studies, standardized mean difference [SMD] = 0.61, 95% confidence interval [CI] 0.29 - 0.94]), on self-efficacy measured with disease-specific self-efficacy scales (9 studies, SMD = 0.23, 95% CI 0.12 - 0.33), and on mastery measured with the Pearlin Mastery Scale (1 study, mean difference [MD] = 2.95, 95% CI 1.66 - 4.24). No effects were found for self-efficacy measured with general self-efficacy scales (3 studies, SMD = 0.05, 95% CI -0.25 to 0.35) or for self-esteem measured with the Rosenberg Self-Esteem Scale (1 study, MD = -0.38, 95% CI -2.45 to 1.69). Furthermore, when comparing Web-based interventions with face-to-face deliveries of the same interventions, no significant (beneficial or harmful) effects were found for mastery (1 study, MD = 1.20, 95% CI -1.73 to 4.13) and self-esteem (1 study, MD = -0.10, 95% CI -0.45 to 0.25). Conclusions: Web-based interventions showed positive effects on empowerment measured with the Diabetes Empowerment Scale, disease-specific self-efficacy scales and the Pearlin Mastery Scale. Because of the low quality of evidence we found, the results should be interpreted with caution. The clinical relevance of the findings can be questioned because the significant effects we found were, in general, small. Clinical Trial: not applicable
Health Information Technology to Facilitate Communication Involving Health Care Providers, Caregivers, and Pediatric Patients: A Scoping Review
Background: Pediatric patients with health conditions requiring follow-up typically depend on a caregiver to mediate at least part of the necessary two-way communication with health care providers on their behalf. Health information technology (HIT) and its subset, information communication technology (ICT), are increasingly being applied to facilitate communication between health care provider and caregiver in these situations. Awareness of the extent and nature of published research involving HIT interventions used in this way is currently lacking. Objective: This scoping review was designed to map the health literature about HIT used to facilitate communication involving health care providers and caregivers (who are usually family members) of pediatric patients with health conditions requiring follow-up. Methods: Terms relating to care delivery, information technology, and pediatrics were combined to search MEDLINE, EMBASE, and CINAHL for the years 1996 to 2008. Eligible studies were selected after three rounds of duplicate screening in which all authors participated. Data regarding patient, caregiver, health care provider, HIT intervention, outcomes studied, and study design were extracted and maintained in a Microsoft Access database. Stage of research was categorized using the UK’s Medical Research Council (MRC) framework for developing and evaluating complex interventions. Quantitative and qualitative descriptive summaries are presented. Results: We included 104 eligible studies (112 articles) conducted in 17 different countries and representing 30 different health conditions. The most common conditions were asthma, type 1 diabetes, special needs, and psychiatric disorder. Most studies (88, 85%) included children 2 to 12 years of age, and 73 (71%) involved home care settings. Health care providers operated in hospital settings in 96 (92%) of the studies. Interventions featured 12 modes of communication (eg, Internet, intranets, telephone, video conferencing, email, short message service [SMS], and manual downloading of information) used to facilitate 15 categories of functions (eg, support, medication management, education, and monitoring). Numerous patient, caregiver, and health care relevant outcomes have been measured. Most outcomes concerned satisfaction, use, usability, feasibility, and resource use, although behavior changes and quality of life were also reported. Most studies (57 studies, 55%) were pilot phase, with a lesser proportion of development phase (24 studies, 23%) and evaluation phase (11 studies, 11%) studies. HIT interventions addressed several recurring themes in this review: establishing continuity of care, addressing time constraints, and bridging geographical barriers. Conclusions: HIT used in pediatric care involving caregivers has been implemented differently in a range of disease settings, with varying needs influencing the function, form and synchronicity of information transfer. Although some authors have followed a phased approach to development, evaluation and implementation, a greater emphasis on methodological standards such as the MRC guidance for complex interventions would produce more fruitful programs of development and more useful evaluations in the future. This review will be especially helpful to those deciding on areas where further development or research into HIT for this purpose may be warranted.
Clinical Effects of Home Telemonitoring in the Context of Diabetes, Asthma, Heart Failure and Hypertension: A Systematic Review
Background: Home telemonitoring figures among the various solutions that could help attenuate some of the problems associated with aging populations, rates of chronic illness, and shortages of health professionals. Objective: The primary aim of this study was to further our understanding of the clinical effects associated with home telemonitoring programs in the context of chronic diseases. Methods: We conducted a systematic review which covered studies published between January 1966 and December 2008. MEDLINE, The Cochrane Library, and the INAHTA (International Network of Agencies for Health Technology Assessment) database were consulted. Our inclusion criteria consisted of: (1) English language publications in peer-reviewed journals or conference proceedings and (2) studies involving patients with diabetes, asthma, heart failure, or hypertension, and presenting results on the clinical effects of home telemonitoring. Results: In all, 62 empirical studies were analyzed. The results from studies involving patients with diabetes indicated a trend toward patients with home telemonitoring achieving better glycemic control. In most trials in which patients with asthma were enrolled, results showed significant improvements in patients’ peak expiratory flows, significant reductions in the symptoms associated with this illness, and improvements in perceived quality of life. Virtually all studies involving patients with hypertension demonstrated the ability of home telemonitoring to reduce systolic and/or diastolic blood pressure. Lastly, due to the equivocal nature of current findings of home telemonitoring involving patients with heart failure, larger trials are still needed to confirm the clinical effects of this technology for these patients. Conclusions: Although home telemonitoring appears to be a promising approach to patient management, designers of future studies should consider ways to make this technology more effective as well as controlling possible mediating variables.
Online Communication Between Doctors and Patients in Europe: Status and Perspectives
Background: Use of the Internet for health purposes is steadily increasing in Europe, while the eHealth market is still a niche. Online communication between doctor and patient is one aspect of eHealth with potentially great impact on the use of health systems, patient-doctor roles and relations and individuals’ health. Monitoring and understanding practices, trends, and expectations in this area is important, as it may bring invaluable knowledge to all stakeholders, in the Health 2.0 era. Objective: Our two main goals were: (1) to investigate use of the Internet and changes in expectations about future use for particular aspects of communication with a known doctor (obtaining a prescription, scheduling an appointment, or asking a particular health question), and (2) to investigate how important the provision of email and Web services to communicate with the physician is when choosing a new doctor for a first time face-to-face appointment. The data come from the second survey of the eHealth Trends study, which addressed trends and perspectives of health-related Internet use in Europe. This study builds on previous work that established levels of generic use of the Internet for self-help activities, ordering medicine or other health products, interacting with a Web doctor/unknown health professional, and communicating with a family doctor or other known health professional. Methods: A representative sample of citizens from seven European countries was surveyed (n = 7022) in April and May of 2007 through computer-assisted telephone interviews (CATI). Respondents were questioned about their use of the Internet to obtain a prescription, schedule an appointment, or ask a health professional about a particular health question. They were also asked what their expectations were regarding future use of the Internet for health-related matters. In a more pragmatic approach to the subject, they were asked about the perceived importance when choosing a new doctor of the possibility of using email and the Web to communicate with that physician. Logistic regression analysis was used to draw the profiles of users of related eHealth services in Europe among the population in general and in the subgroup of those who use the Internet for health-related matters. Changes from 2005 to 2007 were computed using data from the first eHealth Trends survey (October and November 2005, n = 7934). Results: In 2007, an estimated 1.8% (95% confidence interval [CI], 1.5 - 2.1) of the population in these countries had used the Internet to request or renew a prescription; 3.2% (95% CI 2.8 - 3.6) had used the Internet to schedule an appointment; and 2.5% (95% CI 2.2 - 2.9) had used the Internet to ask a particular health question. This represents estimated increases of 0.9% (95% CI 0.5 - 1.3), 1.7% (95% CI 1.2 - 2.2), and 1.4% (95% CI 0.9 - 1.8). An estimated 18.0% (95% CI 17.1 - 18.9) of the populations of these countries expected that in the near future they would have consultations with health professionals online, and 25.4% (95% CI 24.4 - 26.3) expected that in the near future they would be able to schedule an appointment online. Among those using the Internet for health-related purposes, on average more than 4 in 10 people considered the provision of these eHealth services to be important when choosing a new doctor. Conclusions: Use of the Internet to communicate with a known health professional is still rare in Europe. Legal context, health policy issues, and technical conditions prevailing in different countries might be playing a major role in the situation. Interest in associated eHealth services is high among citizens and likely to increase.
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