Do family health clinics provide primary-level palliative care in Ontario and the eastern regions of Quebec?

Objective: To explore the extent to which family health clinics in Ontario and the eastern regions of the province of Quebec provide palliative care.

Design: A cross-sectional survey.

Setting: Ontario and the eastern regions of Quebec.

Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and Their Caregivers: A Qualitative, Instrumental Case Study.

Background: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered.

The CaregiverVoice Survey: A Pilot Study Surveying Bereaved Caregivers To Measure the Caregiver and Patient Experience at End of Life.

Objective: To integrate patient and caregiver feedback into end-of-life (EOL) care improvement, we tested the feasibility of a standardized, common instrument to measure care experiences across multiple settings in the last three months of life.

Methods: We developed and tested a survey, called the CaregiverVoice survey, which combined two validated questionnaires, the FAMCARE-2 and VOICES-SF. A retrospective, observational design was used to survey bereaved caregivers of decedents who had received homecare services in Ontario, Canada.

Engaging Patients in Online Self-Care Technologies for Chronic Disease Management.

A common perception is that the use of Internet-based self-care systems is best suited for a younger, tech-proficient population, and that these systems will increase the burden on patients with complex chronic conditions. The study stratified patients with diabetes into three regimens of use of an Internet-based diabetes self-care portal. Results show that patients were more likely to adhere to a diurnal regimen than a variable regimen, and older patients, over the age of 60, were more adherent than younger patients, regardless of regimen.

Informational needs of gastrointestinal oncology patients.

Objectives: In response to the dearth of consumer health information for patients with gastrointestinal cancers, this study examined the informational needs of these patients to build a plan for future resource development. Although studies have examined informational needs of some such cancers, no published literature has investigated the comprehensive informational needs across all sites of gastrointestinal cancer.

Methods: A cross-sectional needs assessment comprising a self-administered questionnaire was conducted at an ambulatory gastrointestinal oncology clinic in Toronto, Canada.

Would your patient prefer to be considered your friend? Patient preferences in physician relationships.

Objectives: To understand how patient preferences and perceptions of their relationship with their doctor (as patient, friend, partner, client, consumer, or insured) affects confidence in care provided and participation in health care.

Methods: Telephone questionnaire to 2,135 households, representative of the population in Israel.

Results: A total of 508 completed the questionnaire.

Understanding the needs of colorectal cancer patients during the pre-diagnosis phase.

Patients with colorectal cancer (CRC) face a number of challenges leading up to diagnosis; however, research is limited regarding their specific needs during the pre-diagnosis period. A multicenter cross-sectional survey was conducted to elicit information about the CRC experience during the pre-diagnosis phase. Across the three sites, 104 eligible patients were approached, and 82 patients completed the survey, for a total response rate of 78.

A pilot study of an exercise & cognitive behavioral therapy intervention for epithelial ovarian cancer patients.

Background: Ovarian cancer has the highest mortality rate of all gynaecologic cancers. Faced with poor prognoses, stressful treatment effects and a high likelihood of recurrence, survivors must confront significant physical and psychological morbidities that negatively impact health-related quality of life. Frequently reported side effects include cancer-related fatigue, peripheral neuropathy, and psychological distress.

Exploring the use of the survivorship consult in providing survivorship care.

Purpose: Advances in breast cancer treatment have increased survival and contributed to longer periods of survivorship as reported by the Committee CCSsS (Canadian Cancer Statistics) (2011) and Hewitt et al. (2005), increasing the relevance of survivorship care. Survivorship care includes encouraging survivors to acquire the knowledge, skills and confidence to manage their life, as well as engaging survivors through post-diagnosis disease self-management and self-care strategies.

Improving diabetes management with a patient portal: a qualitative study of diabetes self-management portal.

Background: Effective management and care of diabetes is crucial to reducing associated risks such as heart disease and kidney failure. With increasing access and use of the Internet, online chronic disease management is being explored as a means of providing patients with support and the necessary tools to monitor and manage their disease.

Objective: The objective of our study was to evaluate the experience of patients and providers using an online diabetes management portal for patients.

Understanding the needs of lung cancer patients during the pre-diagnosis phase.

Patients with lung cancer have numerous and varying needs spanning across the cancer trajectory; however, only limited research has focused specifically on the pre-diagnosis phase. A multicentre cross-sectional survey was conducted to explore the experience of lung cancer patients during the pre-diagnosis phase. High levels of anxiety were reported by many participants (45.

Psychosexual distress in women with gynecologic cancer: a feasibility study of an online support group.

Objectives: The psychosexual concerns of gynecologic cancer patients are often unaddressed and there are limited resources available for women to deal with this highly sensitive topic. This feasibility study examines the participation rates and preliminary outcomes for an online support group designed specifically for women who are sexually distressed subsequent to gynecologic cancer treatment

Methods: A 12-week online intervention was developed to address the psychosexual impact of gynecologic cancer. This intervention included a professionally moderated, asynchronous discussion forum as well as the provision of psycho-educational materials addressing the psychosexual impact of gynecologic cancer.

Confirmatory factor analysis of the Sexual Adjustment and Body Image Scale in women with gynecologic cancer.

Background: There is evidence that treatment of gynecologic cancer (GC) negatively affects body image and sexuality. The Sexual Adjustment and Body Image Scale (SABIS-G) was developed to assess disturbances after diagnosis of GC. The objective of this study was to confirm the factor structure using a confirmatory factor analysis (CFA).

Informational needs of gynecologic cancer survivors.

Objectives: In preparation for the launch of a gynecologic oncology survivorship program, this study looked at the informational needs of women with gynecologic cancers. Although studies have touched on some of these needs, no published literature has investigated the comprehensive informational needs of gynecologic oncology patients within all sites of gynecologic cancers.

Methods: A needs assessment, consisting of a self-administered questionnaire, was conducted at an ambulatory gynecologic oncology clinic from August 2010 to March 2011.

A qualitative study of an internet-based support group for women with sexual distress due to gynecologic cancer.

Internet-based support groups for cancer patients have been studied extensively; very few have focused on gynecologic cancer. We pilot-tested a web-based support group for gynecologic cancer patients and assessed women's perceptions of the intervention. Twenty-seven gynecologic cancer patients were randomized to an immediate intervention or a waitlist control group.

The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients.

Background: Personal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations.

The role of a clinician-led reflective interview on improving self-efficacy in breast cancer survivors: a pilot study.

Breast cancer survivors experience a wide range of survivorship issues that are not always adequately addressed. This study is an assessment of the Survivorship Consult (SC), a one-to-one clinician-led reflective interview used to capture a comprehensive summary of the survivor experience, to determine its impact on self-efficacy and the perceived likelihood that it initiates behavior change. Using a pre-test/post-test design, data were collected from participants (N = 40) using validated instruments and opened-ended questions to evaluate the SC.

Understanding the support needs of patients accessing test results online. PHRs offer great promise, but support issues must be addressed to ensure appropriate access.

Personal health records (PHR) offer great promise in transforming the patient experience, but a number of support issues must be addressed to ensure that patients have appropriate access to their health information. Two hundred and fifty breast cancer patients registered to use a portal providing access to personal health information over a six-week period. All support calls were directed to a research triage centre and redirected either to technical, clinical or psychosocial support.

Measuring the impact of a moving target: towards a dynamic framework for evaluating collaborative adaptive interactive technologies.

Background: Website evaluation is a key issue for researchers, organizations, and others responsible for designing, maintaining, endorsing, approving, and/or assessing the use and impact of interventions designed to influence health and health services. Traditionally, these evaluations have included elements such as content credibility, interface usability, and overall design aesthetics. With the emergence of collaborative, adaptive, and interactive ("Web 2.

How Consumerist Do People Want to Be? Preferred Role in Decision-Making of Individuals with HIV/AIDS.

Background: North American bioethics emphasizes autonomy, but do care recipients want an autonomous role in treatment decision-making?

Participants: We surveyed people living with HIV/AIDS (PHAs) treated at 12 clinics affiliated with the HIV Ontario Observational Database (HOOD).

Design: The clinics distributed 809 surveys. Demographic information was merged from the HOOD database.

Patient accessible electronic health records: exploring recommendations for successful implementation strategies.

Background: Providing patients with access to their electronic health records offers great promise to improve patient health and satisfaction with their care, as well to improve professional and organizational approaches to health care. Although many benefits have been identified, there are many questions about best practices for the implementation of patient accessible Electronic Health Records (EHRs).

Objectives: To develop recommendations to assist health care organizations in providing patients with access to EHRs in a meaningful, responsible, and responsive manner.

Yes, Virginia, there are system benefits to be gained from providing patients access to their own health information.

The world has evolved into "The Informed Society" where consumers from all types of businesses and industries play larger roles in both the purchase and the development of products and services. But in health care, such " grass roots" contributions have been slower to come to the fore. The first step in the evolution is access to their own health information--providing patients access to their own health information within electronic health records.