ABSTRACT
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. Demographic, clinical, and sexual concerns information were collected during screening. Trial participants and refusers were compared on key variables of age, race, hormone therapy use, time since treatment, level of sexual concerns, and recruitment method using t-tests or chi-square tests. Among the 31 women who declined the trial and completed the survey, the most common reasons for declining were time commitment (74%) and partner noninterest (32%). Most (61%) reported that the telephone format played little to no role in their refusal. Eighty-one percent wanted their partners involved in a program addressing sexual concerns. The two most preferred resources were informational websites (45%) and meeting with a professional (26%). Trial participants and refusers did not differ on any key factors examined. Developing intimacy interventions that are very brief, partner-optional, or that use stepped care may bolster uptake. The methods used to examine study-eligible candidates' needs and preferences could be employed in other health populations, thus having broader implications for research design.
Subject(s)
Breast Neoplasms , Cancer Survivors , Breast Neoplasms/therapy , Female , Humans , Sexual Behavior , Sexual Partners , SurvivorsABSTRACT
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. UPDATED RECOMMENDATIONS: In postmenopausal women at increased risk, the choice of endocrine therapy now includes anastrozole (1 mg/day) in addition to exemestane (25 mg/day), raloxifene (60 mg/day), or tamoxifen (20 mg/day). The decision regarding choice of endocrine therapy should take into consideration age, baseline comorbidities, and adverse effect profiles. Clinicians should not prescribe anastrozole, exemestane, or raloxifene for breast cancer risk reduction to premenopausal women. Tamoxifen 20 mg/day for 5 years is still considered standard of care for risk reduction in premenopausal women who are at least 35 years old and have completed childbearing. Data on low-dose tamoxifen as an alternative to the standard dose for both pre- and postmenopausal women with intraepithelial neoplasia are discussed in the Clinical Considerations section of this article. Additional information is available at www.asco.org/breast-cancer-guidelines.
Subject(s)
Antineoplastic Agents, Hormonal/administration & dosage , Breast Neoplasms/drug therapy , Female , Humans , Randomized Controlled Trials as TopicABSTRACT
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. Couples completed validated sexual, relationship, and psychosocial outcome measures at pre- and post-intervention. Between-group effect sizes and 95% confidence intervals were calculated using the Hedges g. Data supported intervention feasibility and acceptability. For survivors, the IE intervention had medium to large positive effects on all sexual outcomes and most psychosocial outcomes. Effects were less visible for relationship outcomes and were similar but somewhat smaller for partners. The IE intervention demonstrated feasibility, acceptability, and promise in addressing breast cancer survivors' sexual concerns and enhancing their and their partners' intimate relationships and psychosocial well-being. Implications for Psychosocial Oncology Practice The IE intervention demonstrated feasibility and acceptability, suggesting it could be well-received by breast cancer survivors with sexual concerns and their partners. Effects of the IE intervention on breast cancer survivors' sexual concerns and on their and their partners' intimate relationships and psychosocial well-being could not be attributed to therapist time and attention. Interventions that psychosocial providers can use to address breast cancer survivors' sexual concerns are important to the growing number of breast cancer survivors living for many years after their diagnosis.
Subject(s)
Breast Neoplasms/psychology , Cancer Survivors/psychology , Couples Therapy , Sexual Behavior/psychology , Spouses/psychology , Adult , Aged , Breast Neoplasms/therapy , Cancer Survivors/statistics & numerical data , Feasibility Studies , Female , Humans , Male , Middle Aged , Pilot Projects , Spouses/statistics & numerical data , Telephone , Treatment OutcomeABSTRACT
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. METHODS: We electronically surveyed adult cancer patients/survivors, oncology clinicians, and PRO researchers, and conducted one-on-one cognitive interviews with patients/survivors and clinicians. Participants saw clinical trial data comparing two treatments as proportions changed using three different formats: pie charts, bar graphs, icon arrays. Interpretation accuracy, clarity, and format preference were analyzed quantitatively and online survey comments and interviews, qualitatively. RESULTS: The internet sample included 629 patients, 139 clinicians, and 249 researchers; 10 patients and 5 clinicians completed interviews. Bar graphs were less accurately interpreted than pie charts (OR 0.39; p < .0001) and icon arrays (OR 0.47; p < .0001). Bar graphs and icon arrays were less likely to be rated clear than pie charts (OR 0.37 and OR 0.18; both p < .0001). Qualitative data informed interpretation of these findings. CONCLUSIONS: For communicating PROs as proportions changed in patient educational materials and decision aids, these results support the use of pie charts.
Subject(s)
Decision Making , Neoplasms/therapy , Patient Reported Outcome Measures , Quality of Life , Adult , Aged , Communication , Female , Humans , Internet , Male , Middle Aged , Research Personnel , Surveys and Questionnaires , SurvivorsABSTRACT
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. METHODS: The Consensus Panel included cancer survivors/caregivers, oncologists, PRO researchers, and application-specific end-users (e.g., electronic health record vendors, decision aid developers, journal editors). We reviewed the data display issues and their evidence base during pre-meeting webinars. We then surveyed participants' initial perspectives, which informed discussions during an in-person meeting to develop consensus statements. These statements were ratified via a post-meeting survey. RESULTS: Issues addressed by consensus statements relevant to both individual and research data applications were directionality (whether higher scores are better/worse) and conveying score meaning (e.g., none/mild/moderate/severe). Issues specific to individual patient data presentation included representation (bar charts vs. line graphs) and highlighting possibly concerning scores (absolute and change). Issues specific to research study results presentation included handling normed data, conveying statistically significant differences, illustrating clinically important differences, and displaying proportions improved/stable/worsened. CONCLUSIONS: The recommendations aim to optimize accurate and meaningful interpretation of PRO data.
Subject(s)
Patient Reported Outcome Measures , Patient-Centered Care/methods , Quality of Life/psychology , Female , Humans , Surveys and QuestionnairesABSTRACT
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). METHODS: We retrospectively reviewed charts of breast cancer patients who participated in an optional SV 1-3 months after completing locoregional therapy and initial systemic therapy. We report patient demographics, comorbidities, tumor characteristics, treatments, and responses to symptom questionnaires. We compared the characteristics of SV participants to stage I-III analytical cases in the 2010-2015 JH Cancer Registry (JHCR). RESULTS: We identified 87 women with stage I-III breast cancer who participated in SVs from 2010 to 2016. Compared to patients in the JHCR (n = 2942), SV participants were younger, more likely to be African American and more likely to have a higher TNM stage, hormone receptor-negative disease, and HER2-positive disease. They were more likely to have received chemotherapy and radiation therapy. They also have similar recurrence rates despite the SV cohort's shorter median follow-up time. Among SV participants, the prevalence of comorbidities including peripheral neuropathy, anemia, lymphedema, anxiety, deep vein thrombosis, and depression increased significantly from time of diagnosis to most recent follow-up. CONCLUSIONS: Compared to the JHCR cohort, SV participants had higher risk cancers and a high frequency of comorbidities potentially associated with breast cancer and therapy. These high-risk patients may benefit most from specific interventions targeting survivorship care, and their experiences may help improve care delivery models.
Subject(s)
Ambulatory Care , Breast Neoplasms/epidemiology , Cancer Survivors , Risk Factors , Survivorship , Adult , Aged , Aged, 80 and over , Breast Neoplasms/diagnosis , Breast Neoplasms/therapy , Comorbidity , Female , Humans , Middle Aged , Neoplasm Metastasis , Neoplasm Staging , Public Health Surveillance , Registries , Retrospective Studies , Young AdultABSTRACT
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. OBJECTIVE: To identify the association of PRO score directionality, score norming, and other factors on a) how accurately PRO scores are interpreted and b) how clearly they are rated by patients, clinicians, and PRO researchers. METHODS: We electronically surveyed adult cancer patients/survivors, oncology clinicians, and PRO researchers and conducted one-on-one cognitive interviews with patients/survivors and clinicians. Participants were randomized to 1 of 3 line graph formats showing longitudinal change: higher scores indicating "better," "more" (better for function, worse for symptoms), or "normed" to a population average. Quantitative data evaluated interpretation accuracy and clarity. Online survey comments and cognitive interviews were analyzed qualitatively. RESULTS: The Internet sample included 629 patients, 139 clinicians, and 249 researchers; 10 patients and 5 clinicians completed cognitive interviews. "Normed" line graphs were less accurately interpreted than "more" (odds ratio [OR] = 0.76; P = 0.04). "Better" line graphs were more accurately interpreted than both "more" (OR = 1.43; P = 0.01) and "normed" (OR = 1.88; P = 0.04). "Better" line graphs were more likely to be rated clear than "more" (OR = 1.51; P = 0.05). Qualitative data informed interpretation of these findings. LIMITATIONS: The survey relied on the online platforms used for distribution and consequent snowball sampling. We do not have information regarding participants' numeracy/graph literacy. CONCLUSIONS: For communicating PROs as line graphs in patient educational materials and decision aids, these results support using graphs, with higher scores consistently indicating better outcomes.
Subject(s)
Audiovisual Aids/standards , Patient Participation/methods , Patient Reported Outcome Measures , Quality of Life , Adult , Communication , Cross-Sectional Studies , Decision Making , Decision Support Techniques , Female , Humans , Interviews as Topic , Longitudinal Studies , Male , Middle Aged , Neoplasms/psychology , Oncologists/psychology , Patient Education as Topic/methods , Research Personnel/psychologyABSTRACT
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. Participants were affiliated with either an urban academic or rural community cancer center. The discussions focused on cancer-related experiences and needs during the transition out of acute cancer care. RESULTS: Focus groups included 47 people: 28 survivors and 19 caregivers. Three key caregiving themes identified the significance of support for the patient in the clinic, support for the patient in the home, and for caregiver self-care. CONCLUSIONS: Discussions revealed aspects of caregiving that created difficulties for the caregiver themselves or between the caregiver and the cancer survivor. Caregiver experiences and needs may warrant explicit attention as survivors and caregivers are adjusting to a "new normal" that is no longer centered on getting through treatment. IMPLICATIONS FOR CANCER SURVIVORS: Patients and informal caregivers are often conceptualized as a "unit of care"; consideration of the needs of both is important for the provision of appropriate and effective health services.
Subject(s)
Caregivers/psychology , Neoplasms/psychology , Female , Focus Groups , Humans , Male , Neoplasms/mortality , Qualitative Research , SurvivorshipABSTRACT
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. Two formats displayed proportions changed (pie/bar charts). Multivariate modeling was used to analyze interpretation accuracy and clarity ratings. RESULTS: Two hundred and thirty-three clinicians and 248 researchers responded; ten clinicians were interviewed. Line graphs with "better" directionality were more likely to be interpreted accurately than "normed" line graphs (OR 1.55; 95% CI 1.01-2.38; p = 0.04). No significant differences were found between "better" and "more" formats. "Better" formatted graphs were also more likely to be rated "very clear" versus "normed" formatted graphs (OR 1.91; 95% CI 1.44-2.54; p < 0.001). For proportions changed, respondents were less likely to make an interpretation error with pie versus bar charts (OR 0.35; 95% CI 0.2-0.6; p < 0.001); clarity ratings did not differ between formats. Qualitative findings informed the interpretation of the survey findings. CONCLUSIONS: Graphic formats for presenting PRO data differ in how accurately they are interpreted and how clear they are perceived to be. These findings will inform the development of best practices for optimally reporting PRO findings.
Subject(s)
Education, Distance/methods , Patient Reported Outcome Measures , Quality of Life/psychology , Research Personnel/standards , Adult , Aged , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Surveys and QuestionnairesABSTRACT
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. Provider data (n = 11) came from interviews with breast cancer oncologists and nurse practitioners. Patient and provider data were analyzed separately using the framework method of qualitative analysis. RESULTS: Findings revealed individual and institutional barriers to effective communication about sexual concerns and highlighted key communication facilitators (e.g., a positive patient-provider relationship, patient communication as a driver of provider communication, and vice versa). Patients expressed preferences for open, collaborative communication; providers expressed preferences for focused intervention targets (identifying concerns, offering resources/referrals) and convenient format. A model of effective communication of sexual concerns was developed to inform communication interventions. CONCLUSIONS: Findings suggest that to improve patient-provider communication about sexual concerns, knowledge and skills-based interventions that activate patients and that equip providers for effective discussions about sexual concerns are needed, as are institutional changes that could incentivize such discussions.
Subject(s)
Breast Neoplasms/psychology , Communication , Physician-Patient Relations , Sexual Behavior/psychology , Adult , Aged , Breast Neoplasms/complications , Breast Neoplasms/therapy , Female , Focus Groups , Humans , Interpersonal Relations , Middle Aged , Qualitative Research , Sexual Dysfunction, Physiological/psychology , Sexual Dysfunction, Physiological/therapy , Sexual Dysfunctions, Psychological/psychology , Sexual Dysfunctions, Psychological/therapy , Sexual Partners , Sexuality/psychologyABSTRACT
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. METHODS: This mixed-methods study included an Internet survey of cancer patients/survivors, oncology clinicians, and PRO researchers circulated via snowball sampling, plus individual in-person interviews. Clinical importance was conveyed using 3 approaches (presented in random order): normal score range shaded green, concerning scores circled in red, and red threshold lines indicating normal versus concerning scores. Versions also tested 2 approaches to score directionality: higher = more (better for function, worse for symptoms) and higher = better for both function and symptoms. Qualitative data from online comments and in-person interviews supplemented quantitative results on interpretation accuracy, clarity, and the "most useful" format. RESULTS: The survey included 1113 respondents: 627 survivors, 236 clinicians, and 250 researchers, plus 10 patients and 10 clinicians who were purposively sampled interviewees. Interpretation accuracy ranged from 53% to 100%. The formats in which higher = better were interpreted more accurately versus those in which higher = more (odds ratio [OR], 1.30; 95% confidence interval [CI], 1.07-1.58) and were more likely to be rated "very"/"somewhat" clear (OR, 1.39; 95% CI, 1.13-1.70) and "very" clear (OR, 1.36; 95% CI, 1.18-1.58). Red circle formats were interpreted more accurately than green-shaded formats when the first format presented (OR, 1.29; 95% CI, 1.00-1.65). Threshold-line formats were more likely to be rated "very" clear than green-shaded (OR, 1.43; 95% CI, 1.19-1.71) and red-circled (OR, 1.22, 95% CI, 1.02-1.46) formats. Threshold lines were most often selected as "most useful." CONCLUSIONS: The current results support presenting PRO data with higher = better directionality and threshold lines indicating normal versus concerning scores. Cancer 2017;123:1848-1859. © 2017 The Authors. Cancer published byWiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations aremade.
Subject(s)
Neoplasms , Oncologists , Patient Reported Outcome Measures , Research Personnel , Survivors , Activities of Daily Living , Adult , Aged , Fatigue , Female , Humans , Male , Middle Aged , Qualitative Research , Surveys and QuestionnairesABSTRACT
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. Focus group data were coded using the framework approach to qualitative analysis; 8 key themes were identified and used to develop the content and format of the intervention. Feedback from cognitive interviews with study-naïve breast cancer survivors (n = 4) and expert review of materials were also incorporated in finalizing the intervention materials. RESULTS: Qualitative findings centered on the impact of breast cancer and its treatment on women's sexuality and on the intimate relationship, experiences of helpful and unhelpful coping methods, and explicit intervention preferences. Focus group data were particularly helpful in identifying the scope of educational topics and in determining how to structure intervention skills practice (e.g., intimacy-related communication) to be optimally relevant and helpful for both women and their partners. Cognitive interview feedback helped refine intervention materials. CONCLUSION: An intimacy enhancement intervention was adapted for women with breast cancer and their partners. This intervention offers a promising, potentially disseminable approach to addressing breast cancer-related sexual concerns. (PsycINFO Database Record
Subject(s)
Breast Neoplasms/psychology , Interpersonal Relations , Sexual Behavior/psychology , Sexual Partners/psychology , Survivors/psychology , Adult , Colorectal Neoplasms/psychology , Couples Therapy , Female , Focus Groups , Humans , Middle AgedABSTRACT
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. Candidate approaches were then tested in semi-structured, one-on-one interviews with cancer patients and clinicians. Interpretation issues addressed included conveying score meaning (i.e., what is good/bad) and directional inconsistency (whether higher scores are better/worse). An additional issue for individual-level PROs was highlighting potentially concerning scores and, for group-level PROs, identifying important between-group differences (clinical, statistical). RESULTS: One-on-one interviews in a purposive sample of clinicians (n = 40) and patients (n = 39) provided insights regarding approaches to address issues identified. For example, adding descriptive labels to the Y-axis (none, mild, moderate, severe) helps address directional inconsistency and aids interpretation of score meaning. Red circles around concerning data points or a threshold line indicating worse-than-normal scores indicate possibly concerning scores for individual-level PRO data. For group-level PRO data, patients and some clinicians are confused by confidence limits and clinical versus statistical significance, but almost all clinicians want p values displayed. CONCLUSIONS: Variations in interpretation accuracy demonstrate the importance of presenting PRO data in ways that promote understanding and use. In an iterative stakeholder-driven process, we developed improved PRO data presentation formats, which will be evaluated in further research across a large population of patients and clinicians.
Subject(s)
Patient Reported Outcome Measures , Patient-Centered Care/methods , Adult , Aged , Communication , Humans , Middle AgedABSTRACT
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. The findings were placed in the context of the literature informing graphical presentation of other clinical data. RESULTS: Although a large body of literature informs graphical presentation of clinical data, only nine empirical studies addressed presentation of PROs. Four major themes emerged: many patients and most clinicians can accurately interpret some PRO graphs; interpretation accuracy, personal preference, and perceived level of understanding are sometimes discordant; patient age and education may predict PRO graph comprehension; patients tend to prefer simpler graphs than do clinicians. CONCLUSIONS: Little empirical research specifically addresses graphic representation of PRO data. A single format may not work optimally for both clinicians and patients. PRACTICE IMPLICATIONS: Patients and clinicians may or may not comprehend PRO data when graphically presented. Further research to determine best practices for presenting PROs optimally is needed.
Subject(s)
Data Display , Patient Outcome Assessment , Patient-Centered Care , Comprehension , HumansABSTRACT
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. A self-directed exercise assessed participants' interpretation accuracy and ratings of ease-of-understanding and usefulness (0 = least to 10 = most) of each format. Semi-structured qualitative interviews explored helpful and confusing format attributes. RESULTS: We reached thematic saturation with 50 patients (44 % < college graduate) and 20 clinicians. For group-level data, patients rated simple line graphs highest for ease-of-understanding and usefulness (median 8.0; 33 % selected for easiest to understand/most useful) and clinicians rated simple line graphs highest for ease-of-understanding and usefulness (median 9.0, 8.5) but most often selected line graphs with confidence limits or norms (30 % for each format for easiest to understand/most useful). Qualitative results support that clinicians value confidence intervals, norms, and p values, but patients find them confusing. For individual-level data, both patients and clinicians rated line graphs highest for ease-of-understanding (median 8.0 patients, 8.5 clinicians) and usefulness (median 8.0, 9.0) and selected them as easiest to understand (50, 70 %) and most useful (62, 80 %). The qualitative interviews supported highlighting scores requiring clinical attention and providing reference values. CONCLUSIONS: This study has identified preferences and opportunities for improving on current formats for PRO presentation and will inform development of best practices for PRO presentation. Both patients and clinicians prefer line graphs across group-level data and individual-level data formats, but clinicians prefer greater detail (e.g., statistical details) for group-level data.
Subject(s)
Patient Outcome Assessment , Patient-Centered Care/statistics & numerical data , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Decision Making , Female , Humans , Male , Middle Aged , Quality of LifeABSTRACT
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). Secondary outcomes included BC mortality, adverse events, and net health benefits. Guideline recommendations were revised based on an Update Committee's review of the literature. RESULTS: Nineteen articles met the selection criteria. Six chemoprevention agents were identified: tamoxifen, raloxifene, arzoxifene, lasofoxifene, exemestane, and anastrozole. RECOMMENDATIONS: In women at increased risk of BC age ≥ 35 years, tamoxifen (20 mg per day for 5 years) should be discussed as an option to reduce the risk of estrogen receptor (ER) -positive BC. In postmenopausal women, raloxifene (60 mg per day for 5 years) and exemestane (25 mg per day for 5 years) should also be discussed as options for BC risk reduction. Those at increased BC risk are defined as individuals with a 5-year projected absolute risk of BC ≥ 1.66% (based on the National Cancer Institute BC Risk Assessment Tool or an equivalent measure) or women diagnosed with lobular carcinoma in situ. Use of other selective ER modulators or other aromatase inhibitors to lower BC risk is not recommended outside of a clinical trial. Health care providers are encouraged to discuss the option of chemoprevention among women at increased BC risk. The discussion should include the specific risks and benefits associated with each chemopreventive agent.
Subject(s)
Anticarcinogenic Agents/therapeutic use , Breast Neoplasms/prevention & control , Practice Guidelines as Topic , Tamoxifen/therapeutic use , Adult , Female , Humans , Meta-Analysis as Topic , Randomized Controlled Trials as Topic , Risk Assessment , Risk Reduction BehaviorABSTRACT
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. RESULTS: There were 14 new publications that met inclusion criteria: nine systematic reviews (three included meta-analyses) and five randomized controlled trials. After its review and analysis of the evidence, the Update Committee concluded that no revisions to the existing ASCO recommendations were warranted. RECOMMENDATIONS: Regular history, physical examination, and mammography are recommended for breast cancer follow-up. Physical examinations should be performed every 3 to 6 months for the first 3 years, every 6 to 12 months for years 4 and 5, and annually thereafter. For women who have undergone breast-conserving surgery, a post-treatment mammogram should be obtained 1 year after the initial mammogram and at least 6 months after completion of radiation therapy. Thereafter, unless otherwise indicated, a yearly mammographic evaluation should be performed. The use of complete blood counts, chemistry panels, bone scans, chest radiographs, liver ultrasounds, pelvic ultrasounds, computed tomography scans, [(18)F]fluorodeoxyglucose-positron emission tomography scans, magnetic resonance imaging, and/or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination.
Subject(s)
Breast Neoplasms/diagnosis , Breast Neoplasms/prevention & control , Mastectomy, Segmental , Neoplasm Recurrence, Local/diagnosis , Neoplasm Recurrence, Local/prevention & control , Population Surveillance , Advisory Committees , Breast Neoplasms/therapy , Evidence-Based Medicine , Female , Humans , Mammography , Palpation , Physical Examination , Population Surveillance/methods , Time Factors , United StatesABSTRACT
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. In this setting, the need for well-established patterns of communication between care providers is increasingly apparent. We have created a multidisciplinary approach to the management of breast cancer survivors to improve communication and education between providers and patients. This approach could be extended to the care and management of survivors of other types of cancer.
Subject(s)
Breast Neoplasms/therapy , Aged , Breast Neoplasms/mortality , Female , Humans , Physicians, Primary Care , SurvivorsABSTRACT
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. This information may enable patients to exert greater control over their own care. Clinicians may use information systems (e.g., electronic medical records) to coordinate care and share information with other clinicians. Patients and clinicians may use communication tools and information resources to interact with one another in new ways. Caution in using new information resources is warranted to avoid reliance on biased or inappropriate data, and clinicians may need to direct patients to appropriate information resources. Perhaps the greatest challenge for both patients and providers is identifying information that is high quality and that enhances (and does not impede) their interactions.
Subject(s)
Medical Informatics/trends , Neoplasms/diagnosis , Neoplasms/therapy , Patient-Centered Care , Electronic Health Records , Health Personnel , Humans , Internet , Medical Records Systems, Computerized , SoftwareABSTRACT
We examined associations of weight concerns and weight gain with adolescent tobacco cessation treatment and whether these effects differed by gender or ethnoracial group. Participants were 115 urban adolescents recruited for a randomized clinical trial of nicotine replacement therapy. Baseline weight gain concerns were assessed using the Eating Disorders module from the Diagnostic Interview for the Child and Adolescent (DICA-IV). The average weight gain during the trial was 0.59 +/- 2.85 kg among the 43.5% of participants who completed the treatment study. As indicated by the DICA, baseline weight gain concerns were not associated with weight gain during treatment, study completion, or abstinence from smoking at 3-month posttreatment follow-up; these results did not vary by gender or ethnoracial group. Adolescents who quit smoking gained no more weight during the trial than those who smoked.