Examining the impact of a multimedia intervention on decisional conflict and psychological distress among early-stage breast cancer patients: results from a nationwide RCT.

We conducted a nationwide, randomized controlled trial to evaluate the impact of Healing Choices, a novel interactive education and treatment decision program rooted in the self-regulation theory framework, on decisional conflict and psychological distress at 2-month post-intervention in women with early-stage breast cancer. Patients were randomized to receive the National Cancer Institute's standard print material (control) or standard print material plus Healing Choices (the intervention). The final sample at 2-month post-intervention consisted of N = 388 participants (intervention: n = 197; control: n = 191).

Are We Improving? Update and Critical Appraisal of the Reporting of Decision Process and Quality Measures in Trials Evaluating Patient Decision Aids.

Background: In 2014, a systematic review found large gaps in the quality of reporting of measures used in 86 published trials evaluating the effectiveness of patient decision aids (PtDAs). The purpose of this study was to update that review.

Methods: We examined measures of decision making used in 49 randomized controlled trials included in the 2014 and 2017 Cochrane Collaboration systematic review of PtDAs.

Examining the impact of a multimedia intervention on treatment decision-making among newly diagnosed prostate cancer patients: results from a nationwide RCT.

Men diagnosed with early stage prostate cancer face multiple treatment options, each with distinctive side effects that have significant implications for post-treatment quality of life. Healing Choices for Men with Prostate Cancer is a multimedia educational and decision aid program. This nation-wide randomized controlled trial evaluated the impact of Healing Choices on reducing decisional conflict and distress.

Explanation and elaboration of the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) guidelines: examples of reporting SUNDAE items from patient decision aid evaluation literature.

This Explanation and Elaboration (E&E) article expands on the 26 items in the Standards for UNiversal reporting of Decision Aid Evaluations guidelines. The E&E provides a rationale for each item and includes examples for how each item has been reported in published papers evaluating patient decision aids. The E&E focuses on items key to reporting studies evaluating patient decision aids and is intended to be illustrative rather than restrictive.

Standards for UNiversal reporting of patient Decision Aid Evaluation studies: the development of SUNDAE Checklist.

Background: Patient decision aids (PDAs) are evidence-based tools designed to help patients make specific and deliberated choices among healthcare options. The International Patient Decision Aid Standards (IPDAS) Collaboration review papers and Cochrane systematic review of PDAs have found significant gaps in the reporting of evaluations of PDAs, including poor or limited reporting of PDA content, development methods and delivery. This study sought to develop and reach consensus on reporting guidelines to improve the quality of publications evaluating PDAs.

Development and utilization of complementary communication channels for treatment decision making and survivorship issues among cancer patients: The CIS Research Consortium Experience.

Objective: Cancer patients and survivors are assuming active roles in decision-making and digital patient support tools are widely used to facilitate patient engagement. As part of Cancer Information Service Research Consortium's randomized controlled trials focused on the efficacy of eHealth interventions to promote informed treatment decision-making for newly diagnosed prostate and breast cancer patients, and post-treatment breast cancer, we conducted a rigorous process evaluation to examine the actual use of and perceived benefits of two complementary communication channels -- print and eHealth interventions.

Methods: The three Virtual Cancer Information Service (V-CIS) interventions were developed through a rigorous developmental process, guided by self-regulatory theory, informed decision-making frameworks, and health communications best practices.

"It's Valid and Reliable" Is Not Enough: Critical Appraisal of Reporting of Measures in Trials Evaluating Patient Decision Aids.

Background: This review systematically appraises the quality of reporting of measures used in trials to evaluate the effectiveness of patient decision aids (PtDAs) and presents recommendations for minimum reporting standards.

Methods: We reviewed measures of decision quality and decision process in 86 randomized controlled trials (RCTs) from the 2011 Cochrane Collaboration systematic review of PtDAs. Data on development of the measures, reliability, validity, responsiveness, precision, interpretability, feasibility, and acceptability were independently abstracted by 2 reviewers.

A blueprint for genomic nursing science.

Purpose: This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment.

Organizing Constructs: A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint.

Capturing treatment decision making among patients with solid tumors and their caregivers.

Purpose/objectives: To examine the feasibility and acceptability of using a decision aid with an interactive decision-making process in patients with solid tumors and their caregivers during cancer-related treatment.

Research Approach: A phenomenologic approach was used to analyze qualitative data, with a focus on the meaning of participants' lived experiences. Interviews were conducted by telephone or in person.

Understanding the needs of women considering risk-reducing salpingo-oophorectomy.

Background: Because of the significantly increased lifetime risk of ovarian cancer associated with inheritance of a germline mutation in the BRCA1/2 genes, women with a deleterious mutation are recommended to undergo risk-reducing salpingo-oophorectomy at age 35 years or once child-bearing is complete. Significant time is often spent by nurses trained in genetics providing counseling to improve the decision-making process. The decision to undergo surgery is complex and laden with several sources of uncertainty.

The development and preliminary testing of a multimedia patient-provider survivorship communication module for breast cancer survivors.

Objective: This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors' preparedness for effective communication with their health care providers after active treatment.

Methods: The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization.

Results: Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout.

Blogging through cancer: young women's persistent problems shared online.

Background: Many young women have turned to illness blogs to describe their lived experience with cancer. Blogs represent an untapped source of knowledge for researchers and clinicians.

Objective: The purpose of this qualitative, exploratory study was to describe the life disruptions caused by cancer among young women, as well as to understand the facilitators and barriers in accessing healthcare services during and after active treatment.

Patient decisions about breast cancer chemoprevention: a systematic review and meta-analysis.

Purpose: Women at high risk of breast cancer face the complex decision of whether to take tamoxifen or raloxifene for breast cancer chemoprevention. We investigated what is known about decisions of women regarding chemoprevention.

Methods: Using MEDLINE, CINAHL, and PSYCINFO, plus reviewing reference lists of relevant articles, in December 2009 we identified 13 studies that addressed patient decisions about breast cancer chemoprevention, were published in 1995 or later, were peer-reviewed primary clinical studies, and reported rates at which participants showed interest in (hypothetical uptake) or accepted (real uptake) chemoprevention medications.

Which patient will feel down, which will be happy? The need to study the genetic disposition of emotional states.

Purpose: In quality-of-life (QL) research, the genetic susceptibility of negative and positive emotions is frequently ignored, taken for granted, or treated as noise. The objectives are to describe: (1) the major findings of studies addressing the heritable and environmental causes of variation in negative and positive emotional states and (2) the major biological pathways of and genetic variants involved in these emotional states.

Methods: Literature overview.

American society of clinical oncology clinical practice guideline update on the use of pharmacologic interventions including tamoxifen, raloxifene, and aromatase inhibition for breast cancer risk reduction.

PURPOSE To update the 2002 American Society of Clinical Oncology guideline on pharmacologic interventions for breast cancer (BC) risk reduction. METHODS A literature search identified relevant randomized trials published since 2002. Primary outcome of interest was BC incidence (invasive and noninvasive).

The establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes.

To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue.

Mentoring nurses in familial cancer risk assessment and counseling: lessons learned from a formative evaluation.

Background: As familial cancer genetic services moves into community practice increased numbers of trained health professionals are needed to counsel individuals seeking cancer risk information. Nurses have been targeted to provide cancer risk assessment and counseling. To help prepare nurses for this role, a 5-day training in familial cancer risk assessment and counseling followed by a long-distance mentorship to support continued skill development in the work environment was conducted by Fox Chase Cancer Center, Philadelphia, PA.

Assessment of neutropenia-related quality of life in a clinical setting.

Purpose/objectives: To examine how neutropenia affects quality of life (QOL) and explore strategies to assess neutropenia-related QOL in clinical practice.

Data Sources: Published articles, abstracts, conference proceedings, and clinical practice guidelines.

Data Synthesis: Neutropenia can have a detrimental effect on the QOL of patients receiving chemotherapy.

Uptake rates for breast cancer genetic testing: a systematic review.

Purpose: Individuals and families dealing with the possibility of hereditary cancer risk face numerous decisions, including whether to obtain genetic testing. The purpose of this article is to determine what is known about the rate at which people obtain cancer genetic testing.

Methods: Using MEDLINE, CINAHL, and PSYCHINFO plus reviewing reference lists of relevant articles, we identified 40 studies in May 2002 that addressed breast cancer-related decisions, enrolled adult participants, were published in 1990 or more recently, were peer-reviewed primary clinical studies, addressed genetic testing either alone or in combination with genetic counseling, and reported rates at which participants showed interest in and/or underwent cancer genetic testing.

Measurement of psychological factors associated with genetic testing for hereditary breast, ovarian and colon cancers.

Despite numerous individual studies of psychological factors (depression, anxiety, distress) related to genetic testing for inherited cancer syndromes (CGT), there has been no systematic review of the psychological factors are measured among individuals at increased risk for hereditary breast, ovarian, or colon cancer. Our review provides an analysis of psychological factors in studies of CGT and discusses the instruments most commonly used to measure them. We performed a literature search using three major OVID databases from 1993 to January 2003.

Quality of life and chemotherapy-induced neutropenia.

This report summarizes recent data on neutropenia-related quality of life (QOL), including measures and interventions. Neutropenia is a common adverse effect of cytotoxic chemotherapy. The clinical significance of QOL in patients with chemotherapy-induced neutropenia (CIN) remains largely unexplored, although recent studies have shown a correlation between severe CIN and impaired QOL.

Risk modeling: applying evidence-based risk assessment in oncology nursing practice.

Purpose/objectives: To introduce nurses to the concept of evidence-based risk models and their use in practice.

Data Sources: Poster presentations at meetings and published articles and books.

Data Synthesis: Evidence-based risk models can be used in many clinical situations to identify patients at higher risk for a particular disease or clinical outcome, such as adverse events.

Exercise manages fatigue during breast cancer treatment: a randomized controlled trial.

Fatigue is the most prevalent and debilitating symptom experienced by breast cancer patients receiving adjuvant chemotherapy or radiation therapy and few evidence-based treatments are available to manage this distressing side-effect. The purpose of this multi-institutional randomized controlled trial was to determine the effects of exercise on fatigue levels during treatment for breast cancer. Sedentary women (N=119) with Stage 0-III breast cancer receiving outpatient adjuvant chemotherapy or radiation therapy were randomized to a home-based moderate-intensity walking exercise program or to usual care for the duration of their cancer treatment.