Angela M. Barbara

Agreement between self-report and medical records on signs and symptoms of respiratory illness

BACKGROUND Information on patient symptoms can be obtained by patient self-report or medical records review. Both methods have limitations. AIMS To assess the agreement between self-report and documentation in the medical records of signs/symptoms of respiratory illness (fever, cough, runny nose, sore throat, headache, sinus problems, muscle aches, fatigue, earache, and chills). METHODS Respondents were 176 research participants in the Hutterite Influenza Prevention Study during the 2008-2009 influenza season with information about the presence or absence of signs/symptoms from both self-report and primary care medical records. RESULTS Compared with medical records, lower proportions of self-reported fever, sore throat, earache, cough, and sinus problems were found. Total agreements between self-report and medical report of symptoms ranged from 61% (for sore throat) to 88% (for muscle aches and earache), with kappa estimates varying from 0.05 (for chills) to 0.41 (for cough) and 0.51 (for earache). Negative agreement was considerably higher (from 68% for sore throat to 93% for muscle aches and earache) than positive agreement (from 13% for chills to 58% for earache) for each symptom except cough where positive agreement (77%) was higher than negative agreement (64%). Agreements varied by age group. We found better agreement for earache (kappa = 0.62) and lower agreements for headache, sinus problems, muscle aches, fatigue, and chills in older children (aged >5 years) and adults. CONCLUSIONS Agreements were variable depending on the specific symptom. Contrary to research in other patient populations which suggests that clinicians report fewer symptoms than patients, we found that the medical record captured more symptoms than selfreport. Symptom agreement and disagreement may be affected by the perspectives of the person experiencing them, the observer, the symptoms themselves, measurement error, the setting in which the symptoms were observed and recorded, and the broader community and cultural context of patients.

Recommendations for authors of manuscripts reporting inhibitor cases developed in previously treated patients with hemophilia: communication from the SSC of the ISTH

The scope of this recommendation is to provide guidance for reporting of inhibitor cases in previously treated patients (PTPs) with hemophilia A. This guidance is intended to improve transparency and completeness of reporting of observed events; it does not cover planning, executing or analyzing original studies aimed at the assessment of inhibitor rates.

The McMaster Optimal Aging Portal: Usability Evaluation of a Unique Evidence-Based Health Information Website

Background Increasingly, older adults and their informal caregivers are using the Internet to search for health-related information. There is a proliferation of health information online, but the quality of this information varies, often based on exaggerated or dramatic findings, and not easily comprehended by consumers. The McMaster Optimal Aging Portal (Portal) was developed to provide Internet users with high-quality evidence about aging and address some of these current limitations of health information posted online. The Portal includes content for health professionals coming from three best-in-class resources (MacPLUS, Health Evidence, and Health Systems Evidence) and four types of content specifically prepared for the general public (Evidence Summaries, Web Resource Ratings, Blog Posts, and Twitter messages). Objective Our objectives were to share the findings of the usability evaluation of the Portal with particular focus on the content features for the general public and to inform designers of health information websites and online resources for older adults about key usability themes. Methods Data analysis included task performance during usability testing and qualitative content analyses of both the usability sessions and interviews to identify core themes. Results A total of 37 participants took part in 33 usability testing sessions and 21 focused interviews. Qualitative analysis revealed common themes regarding the Portal’s strengths and challenges to usability. The strengths of the website were related to credibility, applicability, browsing function, design, and accessibility. The usability challenges included reluctance to register, process of registering, searching, terminology, and technical features. Conclusions The study reinforced the importance of including end users during the development of this unique, dynamic, evidence-based health information website. The feedback was applied to iteratively improve website usability. Our findings can be applied by designers of health-related websites.

Developing a two‐sided intervention to facilitate shared decision‐making in haemophilia: decision boxes for clinicians and patient decision aids for patients

People with haemophilia face many treatment decisions, which are largely informed by evidence from observational studies. Without evidence‐based ‘best’ treatment options, patient preferences play a large role in decisions regarding therapy. The shared decision‐making (SDM) process allows patients and health care providers to make decisions collaboratively based on available evidence, and patient preferences. Decision tools can help the SDM process. The objective of this project was to develop two‐sided decision tools, decision boxes for physicians and patient decision aids for patients, to facilitate SDM for treatment decisions in haemophilia. Methods. Development of the decision tools comprised three phases: topic selection, prototype development and usability testing with targeted end‐users. Topics were selected using a Delphi survey. Tool prototypes were based on a previously validated framework and were informed by systematic literature reviews. Patients, through focus groups, and physicians, through interviews, reviewed the prototypes iteratively for comprehensibility and usability. Results. The chosen topics were: (i) prophylactic treatment: when to start and dosing, (ii) choosing factor source and (iii) immunotolerance induction: when to start and dosing. Intended end users (both health care providers and haemophilia patients and caregivers) were engaged in the development process. Overall perception of the decision tools was positive, and the purpose of using the tools was well received. Conclusions. This study demonstrates the feasibility of developing decision tools for haemophilia treatment decisions. It also provides anecdotal evidence of positive perceptions of such tools. Future directions include assessment of the tools’ practical value and impact on clinical practice.

Prenatal HIV Testing: Women’s Experiences of Informed Consent in Toronto, Ontario

OBJECTIVE All Canadian jurisdictions have human immunodeficiency virus (HIV) testing programs requiring that clinicians discuss HIV testing with all pregnant women and seek their consent to be tested. Our goal was to evaluate how the informed consent process was being carried out in Ontario. METHODS Between November 2002 and February 2004, women in postpartum wards in three Toronto teaching hospitals were invited to participate in the study. A structured questionnaire was administered on the ward, medical records were reviewed, and data from the Central Public Health Laboratory were examined to verify whether or not the women had been tested. RESULTS Of 446 women invited, 299 (67%) participated. All except one participant had at least one prenatal visit, and 92% had more than five visits. Seventy-four percent of participants recalled a clinician talking to them about testing, and 70% of these felt that they were given the option to refuse the test. Twenty-one women overall (7%) believed that they were not tested during pregnancy or were not certain whether they had been tested or not, but actually had been tested. Women who felt that their care provider did not have an opinion about whether they should undergo testing were more likely to decline. Eighty-six percent were completely satisfied with the testing experience. CONCLUSION Informed consent for prenatal HIV testing is generally being obtained in a manner consistent with provincial guidelines. Our findings raise concern, however, that a significant number of women are not offered testing or in some cases are tested without their consent. Increases in testing rates could be achieved by offering the test to all women and emphasizing that carrying out testing is a recommended part of medical care.

Natural history and clinical characteristics of inhibitors in previously treated haemophilia A patients: a case series.

Development of inhibitors is the most serious complication in haemophilia A treatment. The assessment of risk for inhibitor formation in new or modified factor concentrates is traditionally performed in previously treated patients (PTPs). However, evidence on risk factors for and natural history of inhibitors has been generated mostly in previously untreated patients (PUPs). The purpose of this study was to examine cases of de novo inhibitors in PTPs reported in the scientific literature and to the EUropean HAemophilia Safety Surveillance (EUHASS) programme, and explore determinants and course of inhibitor development.

Practice-based collection of quality indicator data for a comprehensive quality assessment programme in Canadian family practices

Introduction Quality improvement in primary care can be facilitated by the ability to measure indicators in practice. This paper reports on the process and impacts of data collection on indicators of a quality assessment tool in seven interprofessional group family practices in Ontario, Canada. Methods The programme addressed indicators and collected data across multiple domains of practice including clinical quality, physical factors, and patient and staff perceptions. A system audit of the practice, a patient survey, a staff satisfaction survey and chart audits (on hypothyroidism and hyperlipidaemia) were designed to measure selected indicators across the domains. Practices were trained and collected their own data. Practices provided feedback on the process and impacts during a postprogramme workshop and on a survey 1 year later. Results Four-hundred charts audits were completed for each of hyperlipidaemia and hypothyroidism, 319 patient satisfaction surveys were administered in four practices, and the staff satisfaction survey was completed by 77 staff in six practices. Most practices demonstrated indicators of privacy, access and safety. There was more variability in indicators relating to staff professional development and team involvement in meetings. Patient satisfaction with providers was rated highly, whereas some aspects of practice access were rated lower. Practices approached the challenge of participation by engaging multidisciplinary team members and dividing tasks. Most practices reported continued participation in various quality improvement initiatives 1 year later. Conclusions Using a set of indicators, structured processes and training, family practices find the process of gathering and reviewing their data useful for quality improvement.

McMaster Optimal Aging Portal: an evidence-based database for geriatrics-focused health professionals

ObjectiveThe objective of this work was to provide easy access to reliable health information based on good quality research that will help health care professionals to learn what works best for seniors to stay as healthy as possible, manage health conditions and build supportive health systems. This will help meet the demands of our aging population that clinicians provide high quality care for older adults, that public health professionals deliver disease prevention and health promotion strategies across the life span, and that policymakers address the economic and social need to create a robust health system and a healthy society for all ages.ResultsThe McMaster Optimal Aging Portal’s (Portal) professional bibliographic database contains high quality scientific evidence about optimal aging specifically targeted to clinicians, public health professionals and policymakers. The database content comes from three information services: McMaster Premium LiteratUre Service (MacPLUS™), Health Evidence™ and Health Systems Evidence. The Portal is continually updated, freely accessible online, easily searchable, and provides email-based alerts when new records are added. The database is being continually assessed for value, usability and use. A number of improvements are planned, including French language translation of content, increased linkages between related records within the Portal database, and inclusion of additional types of content. While this article focuses on the professional database, the Portal also houses resources for patients, caregivers and the general public, which may also be of interest to geriatric practitioners and researchers.