Development and content validation of the information assessment method for patients and consumers.

BACKGROUND: Online consumer health information addresses health problems, self-care, disease prevention, and health care services and is intended for the general public. Using this information, people can improve their knowledge, participation in health decision-making, and health. However, there are no comprehensive instruments to evaluate the value of health information from a consumer perspective. OBJECTIVE: We collaborated with information providers to develop and validate the Information Assessment Method for all (IAM4all) that can be used to collect feedback from information consumers (including patients), and to enable a two-way knowledge translation between information providers and consumers. METHODS: Content validation steps were followed to develop the IAM4all questionnaire. The first version was based on a theoretical framework from information science, a critical literature review and prior work. Then, 16 laypersons were interviewed on their experience with online health information and specifically their impression of the IAM4all questionnaire. Based on the summaries and interpretations of interviews, questionnaire items were revised, added, and excluded, thus creating the second version of the questionnaire. Subsequently, a panel of 12 information specialists and 8 health researchers participated in an online survey to rate each questionnaire item for relevance, clarity, representativeness, and specificity. The result of this expert panel contributed to the third, current, version of the questionnaire. RESULTS: The current version of the IAM4all questionnaire is structured by four levels of outcomes of information seeking/receiving: situational relevance, cognitive impact, information use, and health benefits. Following the interviews and the expert panel survey, 9 questionnaire items were confirmed as relevant, clear, representative, and specific. To improve readability and accessibility for users with a lower level of literacy, 19 items were reworded and all inconsistencies in using a passive or active voice have been solved. One item was removed due to redundancy. The current version of the IAM4all questionnaire contains 28 items. CONCLUSIONS: We developed and content validated the IAM4all in partnership with information providers, information specialists, researchers and representatives of information consumers. This questionnaire can be integrated within electronic knowledge resources to stimulate users' reflection (eg, their intention to use information). We claim that any organization (eg, publishers, community organizations, or patient associations), can evaluate and improve their online consumer health information from a consumers' perspective using this method.

Retrospective review of prenatal care and perinatal outcomes in a group of uninsured pregnant women.

OBJECTIVE: To assess the adequacy of prenatal care and perinatal outcomes for uninsured pregnant women at two primary care centres in Canada. METHODS: We conducted a retrospective case comparison study of uninsured women presenting for prenatal care between 2004 and 2007 (n = 71). Control subjects (n = 72) were chosen from provincially insured women presenting for prenatal care during the same period. A modified Kotelchuck Index was used to assess adequacy of care. Frequency of routine prenatal testing (blood tests, ultrasound, cervical swabs, Pap testing, and genetic screening) was compared. Perinatal outcomes assessed included gestational age and birth weight. RESULTS: Uninsured pregnant women presented for initial care 13.6 weeks later than insured women (at 25.6 weeks vs. 12.0 weeks, P < 0.001). Uninsured women had fewer blood tests (93.7% vs. 100%, P = 0.045), ultrasound screenings (82.5% vs. 98.4%, P = 0.003), cervical swabs (69.8% vs. 85.2%, P = 0.04), Pap tests (38.1% vs. 75.4%, P < 0.001), genetic screenings (12.7% vs. 44.3%, P < 0.001), and visits with health care providers (6.6 vs. 10.7, P = 0.05). Using a modified Kotelchuck Adequacy of Prenatal Care Utilization Index, uninsured women were more likely to be categorized as receiving "inadequate care" (uninsured 61.9% vs. insured 11.7%, P < 0.001). CONCLUSION: This study begins to document the care of uninsured pregnant women in Canada. Women in this category presented late for prenatal care, were less likely to have adequate screening tests, and were more likely to receive "inadequate care" as defined by the modified Kotelchuck Index. This information may be valuable in helping to plan programs to improve access to timely and adequate medical care for uninsured pregnant women.

Odor identification deficits are associated with increased risk of neuropsychiatric complications in patients with Parkinson's disease.

Olfactory deficits appear early in the course of Parkinson's disease (PD) but their prognostic significance is not known. The goal of this study was to determine whether the severity of olfactory impairment is associated with subsequent risk of developing complications of PD. One hundred patients with PD self-administered the University of Pennsylvania Smell Identification Test (UPSIT). Testing was done, on average, 3.6 years from the time of initial diagnosis. The incidence of neuropsychiatric features of PD, including cognitive decline and visual hallucinations, was ascertained through chart review after an average of 6.8 years of follow-up. Incidence of motor outcomes including falls and dyskinesias was also obtained. There was a significant trend for increased risk of neuropsychiatric complications across declining quartiles of olfactory test scores. In addition, subjects in the lowest quartile of olfactory performance had a significantly higher adjusted risk of hallucinations (HR = 4.70, 95% CI 1.64, 13.42) and cognitive decline (HR = 3.10, 95% CI 1.05, 9.21) than those in the reference quartile. There was no association between olfactory dysfunction and dyskinesias, and a very modest association with risk of falls. These findings suggest that severity of olfactory impairment early in the disease course may be a useful marker for the risk of neuropsychiatric complications of PD.

Premotor Parkinson's disease: clinical features and detection strategies.

In many areas of medicine, the focus has shifted from treating existing disease to screening and prevention. The technology to screen for Parkinson's disease (PD) already exists. The current challenge is to define the appropriate use of predictive testing for PD. Imaging technologies currently offer the highest degree of accuracy for identifying premotor PD, but they are expensive as screening tools. Efficiency is greatly enhanced by combining imaging with a prescreening test, such as olfactory testing. This two-step process has the potential to greatly reduce costs while retaining diagnostic accuracy. Ultimately, the role of preclinical detection of PD will be determined by the ability of emerging therapies to influence clinical outcomes. As such, implementation of large-scale screening strategies awaits the arrival of clearly safe and effective therapies that address the underlying pathogenesis of PD. Current research to evaluate efficient screening methods and to understand the clinical and physiological features of "premotor" PD will lay the foundation for the screening and prevention strategies of the future.

Access to sterile injecting equipment is more important than awareness of HCV status for injection risk behaviors among drug users.

Awareness of hepatitis C virus (HCV) infection status is expected to influence risk behaviors. In 2004-2005, injection drug users (IDUs) recruited from syringe exchange programs (SEPs) and methadone clinics in Montreal, Canada, were interviewed on drug use behaviors (past 6 months) and HCV testing. Subjects (n = 230) were classified as low/intermediate risk (20.4% borrowed drug preparation equipment only) and high risk (19.6% borrowed syringes), and 54.5% reported being HCV positive. Logistic regression modeling showed that compared to no risk (60% borrowed nothing), low/intermediate risk was associated with fewer noninjecting social network members, poor physical health, and problems obtaining sterile injecting equipment. High risk was associated with all of these factors except social networks. HCV status was not associated with any level of risk. Improved access to sterile injecting equipment may be more important than knowledge of HCV status in reducing injection risks among this IDU population. The study limitations are noted and recommendations discussed.

Low perceived benefits and self-efficacy are associated with hepatitis C virus (HCV) infection-related risk among injection drug users.

Hepatitis C prevention counselling and education are intended to increase knowledge of disease, clarify perceptions about vulnerability to infection, and increase personal capacity for undertaking safer behaviours. This study examined the association of drug equipment sharing with psychosocial constructs of the AIDS Risk Reduction Model, specifically, knowledge and perceptions related to hepatitis C virus (HCV) among injection drug users (IDUs). Active IDUs were recruited between April 2004 and January 2005 from syringe exchange and methadone maintenance treatment programs in Montreal, Canada. A structured, interviewer-administered questionnaire elicited information on drug preparation and injection practices, self-reported hepatitis C testing and infection status, and AIDS Risk Reduction Model constructs. Separate logistic regression models were developed to examine variables in relation to: (1) the sharing of syringes, and (2) the sharing of drug preparation equipment (drug containers, filters, and water). Among the 321 participants, the mean age was 33 years, 70% were male, 80% were single, and 91% self-identified as Caucasian. In the multivariable analyses, psychosocial factors linked to syringe sharing were lower perceived benefits of safer injecting and greater difficulty to inject safely. As with syringe sharing, the sharing of drug preparation equipment was associated with lower perceived benefits of safer injecting but also with low self-efficacy to convince others to inject more safely. Interventions should aim to heighten awareness of the benefits of risk reduction and provide IDUs with the skills necessary to negotiate safer injecting with their peers.

Prevalence, diagnosis, and treatment of ankyloglossia: methodologic review.

OBJECTIVE: To review the diagnostic criteria for, the prevalence of, and the effectiveness of frenotomy for treatment of ankyloglossia. DATA SOURCES: MEDLINE and CINAHL databases were searched for articles suitable for a methodologic review of studies on various aspects of ankyloglossia. STUDY SELECTION: Studies that presented data on patients and addressed ankyloglossia in relation to breastfeeding were selected. Case reports, case series, retrospective studies, prospective controlled studies, and randomized controlled trials were included in the analysis. Opinion pieces, literature reviews, studies without data on patients, studies that did not focus on breastfeeding, position statements, and surveys were excluded. SYNTHESIS: There is no well-validated clinical method for establishing a diagnosis of ankyloglossia. Five studies using different diagnostic criteria found a prevalence of ankyloglossia of between 4% and 10%. The results of 6 non-randomized studies and 1 randomized study assessing the effectiveness of frenotomy for improving nipple pain, sucking, latch, and continuation of breastfeeding all suggested frenotomy was beneficial. No serious adverse events were reported. CONCLUSION: Diagnostic criteria for ankyloglossia are needed to allow for comparative studies of treatment. Frenotomy is likely an effective treatment, but further randomized controlled trials are needed to confirm this. A reliable frenotomy decision rule is also needed.

Minimal uptake of sterile drug preparation equipment in a predominantly cocaine injecting population: implications for HIV and hepatitis C prevention.

OBJECTIVE: To identify factors associated with using sterile drug injection equipment by injection drug users (IDUs). METHODS: 275 IDUs were recruited from syringe exchange programs in Montreal, Canada in 2004-2005. A structured, interviewer-administered questionnaire collected information about demographics, drug injection practices, self-reported HIV and hepatitis C virus (HCV) status, and harm reduction behaviours. Logistic regression was used to model variables in relation to the use of sterile syringes, containers, filters, and drug preparation water. RESULTS: Sterile syringes, containers, filters, and water were used for at least half of injecting episodes by 95%, 23%, 23%, and 75% of subjects, respectively. In multivariate analysis, users of sterile syringes had higher odds of being older and injecting alone, and were less likely to report problems obtaining sterile syringes and requiring or providing help with injecting. Using sterile filters was associated with having at least high school education, injecting heroin, and injecting alone. In addition to the factors associated with filters, users of sterile containers were more likely to be HCV-negative and older. Using sterile water was associated with daily injecting and being HCV-negative. CONCLUSIONS: Improving the uptake of sterile drug preparation equipment among IDUs could be aided by considering drug-specific risks, such as drug of choice and injecting context, while reinforcing existing messages on safer injecting. The association between sterile equipment use and HCV-negative status may be representative of an established subgroup of safer injectors who have remained free of infection because of consistent safe injecting practices.

Effectiveness of hypnotherapy with cancer patients' trajectory: emesis, acute pain, and analgesia and anxiolysis in procedures.

Clinical hypnosis in cancer settings provides symptom reduction (pain and anxiety) and empowers patients to take an active role in their treatments and procedures. The goal of this paper is to systematically and critically review evidence on the effectiveness of hypnotherapy for emesis, analgesia, and anxiolysis in acute pain, specifically in procedures with an emphasis on the period from 1999 to 2006. Further, it aims to provide a theoretical rationale for the use of hypnosis with cancer populations in the whole spectrum of illness/treatment trajectory in several clinical contexts. Finally, a treatment protocol for management of overt anxiety and phobic reactions in the radiotherapy suite is presented, with the intent of having such a protocol empirically validated in the future.

Impact of clinical information-retrieval technology on physicians: a literature review of quantitative, qualitative and mixed methods studies.

PURPOSE: This paper appraises empirical studies examining the impact of clinical information-retrieval technology on physicians and medical students. METHODS: The world literature was reviewed up to February 2004. Two reviewers independently identified studies by scrutinising 3368 and 3249 references from bibliographic databases. Additional studies were retrieved by hand searches, and by searching ISI Web of Science for citations of articles. Six hundred and five paper-based articles were assessed for relevance. Of those, 40 (6.6%) were independently appraised by two reviewers for relevance and methodological quality. These articles were quantitative, qualitative or of mixed methods, and 26 (4.3%) were retained for further analysis. For each retained article, two teams used content analysis to review extracted textual material (quantitative results and qualitative findings). RESULTS: Observational studies suggest that nearly one-third of searches using information-retrieval technology may have a positive impact on physicians. Two experimental and three laboratory studies do not reach consensus in support of a greater impact of this technology compared with other sources of information, notably printed educational material. Clinical information-retrieval technology may affect physicians, and further research is needed to examine its impact in everyday practice.

A new impact assessment method to evaluate knowledge resources.

RATIONALE: Methods to systematically measure the impact of knowledge resources on health professionals would enhance evaluation of these resources in the real world. OBJECTIVE: To propose a new impact assessment method. BACKGROUND: We demonstrated the feasibility of combining a 4-level scale with Computerized Ecological Momentary Assessment (CEMA) for efficiently measuring the impact of a knowledge resource. METHOD: We critically reviewed the world literature regarding the impact of clinical information-retrieval technology on trainees and doctors, and retained 26 papers for qualitative content analysis. FINDINGS: Of those, 21 use a nominal scale (yes/no), none systematically measures the impact of searches for information outside of a laboratory setting, and none uses an ordinal scale. The literature supports the proposed levels of impact, and suggests a fifth level. CONCLUSION: A new impact assessment method is proposed, which combines a 5-level revised scale and CEMA.