Sara Urowitz

Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations.

Background  What role do people want to play in treatment decision‐making (DM)?

How does trust affect patient preferences for participation in decision-making?

Objective  Does trust in physicians aid or hinder patient autonomy? We examine the relationship between trust in the recipients doctor, and desire for a participative role in decisions about medical treatment.

Patient, consumer, client, or customer: what do people want to be called?

Objective  To clarify preferred labels for people receiving health care.

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

BackgroundPersonal 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. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.MethodsA quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.ResultsA total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.ConclusionsParticipants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.

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. This study investigated the informational needs of patients, including the importance of information, the amount desired, and the preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social, and spiritual. RESULTS 185 surveys were analyzed and the majority of the respondents were Caucasian (77%) and over the age of 50 (66%). Forty-nine percent of respondents were diagnosed with ovarian cancer, and there was an even distribution between newly diagnosed patients (38%), those in long-term follow-up (27%), and those with recurrent disease (37%). Overall, respondents placed more importance on receiving medical information (P<0.01). The three preferred education modalities were; pamphlets, one-on-one discussions with health care professionals and websites. Age, education, and disease site were associated with differing informational needs. CONCLUSIONS This study has highlighted the most important informational needs of patients with gynecologic malignancies in our patient population. This information may guide the development of clinical survivorship programs and educational resources for patients in the future.

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

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

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. Women participated in a 12-week, web-based support group focusing on sexuality-related topics. Semi-structured interviews were conducted to investigate the feasibility and efficacy of the intervention. Women reported benefits to participating in the intervention, including receiving support from group members and moderators, increased emotional well-being, improved feelings of body image and sexuality, and comfort in discussing sexuality online. Web-based support groups are both feasible and accepted by gynecologic cancer patients with psychosexual distress. The online format provided women with easy access to the support group and anonymity in discussing psychosexual concerns. Women with gynecologic cancer may benefit from participating in online support groups which provide an environment of relative anonymity to discuss psychosexual concerns.

Population-Based Standardized Symptom Screening: Cancer Care Ontario's Edmonton Symptom Assessment System and Performance Status Initiatives

Ontario is Canada’s largest province, with a population of 13.5 million people. Its cancer system is organized into 14 regions comprising a regional cancer program, a regional cancer center (RCC), and numerous community providers as part of their range of services. Cancer Care Ontario (CCO) is the government agency responsible for overseeing funding for the regional cancer programs and to develop and implement quality improvements and standards in the delivery of care. In 2006, CCO launched the Provincial Palliative Care Integration Project with the goal of improving symptom management. 1,2 The Edmonton Symptom Assessment System (ESAS)—a self-reported instrument measuring nine common symptoms of cancer—was selected as the standardized screening tool. 3,4 In 2008, the project was expanded to become the Ontario Cancer Symptom Management Collaborative (OCSMC) with screening extended to include all patients with cancer in recognition of the heavy symptom burden that patients with cancer face. 5 The goal of the OCSMC is to contribute to an excellent patient experience by improving the quality and consistency of physical and emotional symptom management throughout the cancer journey. To improve symptom management, the OCSMC employs common assessment and care management tools including Interactive Symptom Assessment and Collection (ISAAC). ISAAC allows patients to report their symptoms via kiosks or tablets directly to clinicians in real time from hospitals, clinics, or home. Through the implementation of ISAAC, Ontario possesses a unique data source that collects patient-reported symptom information that is available both locally and centrally, in electronic form, and linkable to the cancer registry and other administrative data sets. With more than 2 million symptom screens from 280,000 patients registered in the provincial symptom database, Ontario possesses the richest data set of its kind, which has been valuable for health services research when linked to other databases for analysis.

Informational needs of gastrointestinal oncology patients.

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.

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

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).