Use of Endocrine Therapy for Breast Cancer Risk Reduction: ASCO Clinical Practice Guideline Update.

Purpose: To update the ASCO guideline on pharmacologic interventions for breast cancer risk reduction and provide guidance on clinical issues that arise when deciding to use endocrine therapy for breast cancer risk reduction.

Methods: An Expert Panel conducted targeted systematic literature reviews to identify new studies.

Results: A randomized clinical trial that evaluated the use of anastrozole for reduction of estrogen receptor-positive breast cancers in postmenopausal women at increased risk of developing breast cancer provided the predominant basis for the update.

A randomized pilot trial of a couple-based intervention addressing sexual concerns for breast cancer survivors.

The purpose was to test the feasibility, acceptability, and preliminary efficacy of a 4-session couple-based Intimacy Enhancement (IE) intervention addressing breast cancer survivors' sexual concerns delivered via telephone. Twenty-nine post-treatment breast cancer survivors reporting sexual concerns and their intimate partners were randomized (2:1) to the IE intervention or to an educational control condition, both of which were delivered by trained psychosocial providers. Feasibility and acceptability were measured through recruitment, retention, session completion, and post-intervention program evaluations.

Why do breast cancer survivors decline a couple-based intimacy enhancement intervention trial?

Recruitment challenges hinder behavioral intervention research in cancer survivors. The purpose was to examine the reasons for declining and intervention preferences of study-eligible breast cancer survivors declining a trial of a four-session couple-based Intimacy Enhancement intervention (refusers) and explore whether refusers differed from participants on key characteristics. Partnered, post-treatment breast cancer survivors reporting sexual concerns who were eligible for but declined participation in the intervention trial were approached to complete a standardized 5-min telephone survey assessing reasons for declining and support preferences.

In proportion: approaches for displaying patient-reported outcome research study results as percentages responding to treatment.

Purpose: Patient-reported outcome (PRO) data from clinical trials can promote valuable patient-clinician communication and aid the decision-making process regarding treatment options. Despite these benefits, both patients and doctors face challenges in interpreting PRO scores. The purpose of this study was to identify best practices for presenting PRO results expressed as proportions of patients with changes from baseline (improved/stable/worsened) for use in patient educational materials and decision aids.

Survivorship care visits in a high-risk population of breast cancer survivors.

Purpose: Breast cancer survivors face numerous challenges after diagnosis and treatment. Several models have been developed to attempt to improve quality of care. Here, we describe characteristics and outcomes of patients who participated in survivorship visits (SV) at Johns Hopkins (JH).

Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data.

Purpose: Patient-reported outcomes (PROs) can promote patient-centered care in multiple ways: (1) using an individual patient's PRO data to inform his/her management, (2) providing PRO results from comparative research studies in patient educational materials/decision aids, and (3) reporting PRO results from comparative research studies in peer-reviewed publications. Patients and clinicians endorse the value of PRO data; however, variations in how PRO measures are scored and scaled, and in how the data are reported, make interpretation challenging and limit their use in clinical practice. We conducted a modified Delphi process to develop stakeholder-engaged, evidence-based recommendations for PRO data display for the three above applications to promote understanding and use.

Picture This: Presenting Longitudinal Patient-Reported Outcome Research Study Results to Patients.

Background: Patient-reported outcome (PRO) results from clinical trials and research studies can inform patient-clinician decision making. However, data presentation issues specific to PROs, such as scaling directionality (higher scores may represent better or worse outcomes) and scoring strategies (normed v. nonnormed scores), can make the interpretation of PRO scores uniquely challenging.

A qualitative exploration of the experiences, needs, and roles of caregivers during and after cancer treatment: "That's what I say. I'm a relative survivor".

Purpose: The transition out of acute cancer treatment has been identified as a time of stress and uncertainty for cancer survivors, but little is known about how caregivers fare during this period. In this paper, we discuss caregiving work up to and including transition from initial care and the needs of caregivers during transition and beyond.

Methods: We held four focus groups with breast, prostate, and colorectal cancer survivors who had completed treatment with intent to cure and two with caregivers for the same population.

Presenting comparative study PRO results to clinicians and researchers: beyond the eye of the beholder.

Purpose: Patient-reported outcome (PRO) results from clinical trials can inform clinical care, but PRO interpretation is challenging. We evaluated the interpretation accuracy and perceived clarity of various strategies for displaying clinical trial PRO findings.

Methods: We conducted an e-survey of oncology clinicians and PRO researchers (supplemented by one-on-one clinician interviews) that randomized respondents to view one of the three line-graph formats (average scores over time for two treatments on four domains): (1) higher scores consistently indicating "better" patient status; (2) higher scores indicating "more" of what was being measured (better for function, worse for symptoms); or (3) normed scores.

Effective patient-provider communication about sexual concerns in breast cancer: a qualitative study.

Purpose: Breast cancer patients commonly experience sexual concerns, yet rarely discuss them with clinicians. The study examined patient and provider experiences and preferences related to communication about breast cancer-related sexual concerns with the goal of informing intervention development.

Methods: Patient data (n = 28) were derived from focus groups and interviews with partnered and unpartnered women treated for breast cancer reporting sexual concerns.

What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability.

Background: Patient-reported outcomes (PROs) (eg, symptoms, functioning) can inform patient management. However, patients and clinicians often have difficulty interpreting score meaning. The authors tested approaches for presenting PRO data to improve interpretability.

Adapting a couple-based intimacy enhancement intervention to breast cancer: A developmental study.

Objective: Sexual concerns continue to be poorly addressed for women treated for breast cancer and evidence-based interventions that adequately address these concerns are scarce. The objective of this study was to adapt a telephone-based intimacy enhancement intervention, previously tested in couples facing colorectal cancer, to the needs of women with breast cancer through qualitative focus groups, cognitive interviews, and expert review.

Method: Three semistructured qualitative focus groups in partnered posttreatment breast cancer survivors (n = 15) reporting sexual concerns were conducted to investigate experiences of breast cancer-related sexual concerns and intervention preferences.

Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice.

Purpose: Patient-reported outcomes (PROs) can promote patient-centered care, but previous research has documented interpretation challenges among clinicians and patients. We engaged stakeholders to improve formats for presenting individual-level PRO data (for patient monitoring) and group-level PRO data (for reporting comparative clinical studies).

Methods: In an iterative process, investigators partnered with stakeholder workgroups of clinicians and patients to address previously identified interpretation challenges.

Graphical displays of patient-reported outcomes (PRO) for use in clinical practice: What makes a pro picture worth a thousand words?

Unlabelled: Patient-reported outcomes (PROs) report patients' assessments of the impact of a health condition and its treatment, and can promote patient-centered care.

Objectives: To address the effectiveness of graphic display of PRO data in clinical practice by reviewing existing literature, and current recommendations, regarding graphic presentations of PROs.

Methods: We performed an integrated literature review to identify themes and emerging principles guiding effective graphic display of PRO data.

Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation.

Background: Patient-reported outcomes (PROs) promote patient-centered care by using PRO research results ("group-level data") to inform decision making and by monitoring individual patient's PROs ("individual-level data") to inform care. We investigated the interpretability of current PRO data presentation formats.

Method: This cross-sectional mixed-methods study randomized purposively sampled cancer patients and clinicians to evaluate six group-data or four individual-data formats.

Use of pharmacologic interventions for breast cancer risk reduction: American Society of Clinical Oncology clinical practice guideline.

Purpose: To update the 2009 American Society of Clinical Oncology guideline on pharmacologic interventions for breast cancer (BC) risk reduction.

Methods: A systematic review of randomized controlled trials and meta-analyses published from June 2007 through June 2012 was completed using MEDLINE and Cochrane Collaboration Library. Primary outcome of interest was BC incidence (invasive and noninvasive).

Breast cancer follow-up and management after primary treatment: American Society of Clinical Oncology clinical practice guideline update.

Purpose: To provide recommendations on the follow-up and management of patients with breast cancer who have completed primary therapy with curative intent.

Methods: To update the 2006 guideline of the American Society of Clinical Oncology (ASCO), a systematic review of the literature published from March 2006 through March 2012 was completed using MEDLINE and the Cochrane Collaboration Library. An Update Committee reviewed the evidence to determine whether the recommendations were in need of updating.

Coordination of care in breast cancer survivors: an overview.

The number of breast cancer survivors in the United States is increasing. With longer survival, there has been an increase in the complexity and duration of posttreatment care. Multidisciplinary care teams are needed to participate across the broad spectrum of issues that breast cancer survivors face.

The role of informatics in promoting patient-centered care.

Patient-centered care is an important aspect of high-quality care. Health informatics, particularly advances in technology, has the potential to facilitate, or detract from, patient-centered cancer care. Informatics can provide a mechanism for patients to provide their clinician(s) with critical information and to share information with family, friends, and other patients.