Current recommendations on the selection of measures for well-being.

Measures of well-being have proliferated over the past decades. Very little guidance has been available as to which measures to use in what contexts. This paper provides a series of recommendations, based on the present state of knowledge and the existing measures available, of what measures might be preferred in which contexts. The recommendations came out of an interdisciplinary workshop on the measurement of well-being. The recommendations are shaped around the number of items that can be included in a survey, and also based on the differing potential contexts and purposes of data collection such as, for example, government surveys, or multi-use cohort studies, or studies specifically about psychological well-being. The recommendations are not intended to be definitive, but to stimulate discussion and refinement, and to provide guidance to those relatively new to the study of well-being.

Cognitive interviewing of the US National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

PURPOSE: The National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is a library of question items that enables patient reporting of adverse events (AEs) in clinical trials. This study contributes content validity evidence of the PRO-CTCAE by incorporating cancer patient input of the relevance and comprehensiveness of the item library. METHODS: Cognitive interviews were conducted among patients undergoing chemotherapy or radiation therapy at multiple sites to evaluate comprehension, memory retrieval, judgment, and response mapping related to AE terms (e.g., nausea), attribute terms (regarding frequency, severity, or interference), response options, and recall period. Three interview rounds were conducted with ≥20 patients completing each item per round. Items were modified and retested if ≥3 patients exhibited cognitive difficulties or if experienced by ≤25% patients. RESULTS: One hundred and twenty-seven patients participated (35% ≤high school, 28% non-white, and 59% female). Most AE terms (63/80) generated no cognitive difficulties. The remaining 17 were modified without further difficulties by Round 3. Terms were comprehended regardless of education level. Attribute terms and response options required no modifications. Patient adherence to recall period (7 days) was improved when the reference period was incorporated. CONCLUSIONS: This study provides evidence confirming comprehension of the US English language versions of items in the PRO-CTCAE library for measuring symptomatic AEs from the patient perspective within the context of cancer treatment. Several minor changes were made to the items to improve item clarity, comprehension, and ease of response judgment. This study helps to establish the content validity of PRO-CTCAE items for patient reporting of AEs during cancer treatment.

Connecting Implementation Science, Community-Engaged Research, and Health Promotion to Address Cancer Inequities in Massachusetts: The UMB/DF-HCC U54 Outreach Core.

The Outreach Core of the U54 Partnership between the Dana-Farber/Harvard Cancer Center and the University of Massachusetts Boston created a new model for addressing cancer inequities that integrates implementation science, community-engaged research, and health promotion. Key elements of the approach include engaging a Community Advisory Board, supporting students from underrepresented minority backgrounds to conduct health promotion and community-engaged research, increasing the delivery of evidence-based cancer prevention programs to underserved communities (directly and by training local organizations), supporting research-practice partnerships, and disseminating findings. Our model highlights the need for long-term investments to connect underserved communities with evidence-based cancer prevention.

Marketing of personalized cancer care on the web: an analysis of Internet websites.

Internet marketing may accelerate the use of care based on genomic or tumor-derived data. However, online marketing may be detrimental if it endorses products of unproven benefit. We conducted an analysis of Internet websites to identify personalized cancer medicine (PCM) products and claims. A Delphi Panel categorized PCM as standard or nonstandard based on evidence of clinical utility. Fifty-five websites, sponsored by commercial entities, academic institutions, physicians, research institutes, and organizations, that marketed PCM included somatic (58%) and germline (20%) analysis, interpretive services (15%), and physicians/institutions offering personalized care (44%). Of 32 sites offering somatic analysis, 56% included specific test information (range 1-152 tests). All statistical tests were two-sided, and comparisons of website content were conducted using McNemar's test. More websites contained information about the benefits than limitations of PCM (85% vs 27%, P < .001). Websites specifying somatic analysis were statistically significantly more likely to market one or more nonstandard tests as compared with standard tests (88% vs 44%, P = .04).

Health care system approaches for cancer patient communication.

Cancer patient communication is always embedded in a complex background of inter-related parts, that is, a system. Cancer patients specifically are exposed to a health care system. Considering this context, this article summarizes the insights from a roundtable discussion involving behavioral medicine and oncology experts convened at the 2008 Annual Meeting of the Society of Behavioral Medicine as part of an annual preconference course entitled "Interpersonal Communication and Cancer Control: Emerging Themes." In this article we summarize the communication-relevant components of health care systems, focusing on the macro level. Next, we review existing theoretical frameworks for systems-based communication, the unique aspects of "systems thinking," and the emerging systems tools that can be integrated in cancer communication. Finally, we propose a research agenda for successful system approaches for patient-centered cancer communication.

The SunWise Policy intervention for school-based sun protection: a pilot study.

Skin cancer is highly preventable, but clearly there is a critical need to focus on better ways to disseminate information about known skin cancer prevention. The U.S. Environmental Protection Agency's (EPA) SunWise Program is one channel for reaching children, teachers, and school nurses. In a pilot study designed to increase adoption of school-based sun protection policies, 28 schools were randomly assigned to one of three groups: Control, which included the EPA's original SunWise curriculum toolkit; SunWise Policy, which included a revised toolkit emphasizing policy; and SunWise Policy plus Technical Assistance, which included the policy toolkit and 3 technical assistance phone calls. The enhanced SunWise Policy plus Technical Assistance intervention led to more new sun protection policies. Use of study interventions for improving sun protection practices such as policy toolkits or brief counseling can be easily interwoven into school hours by school nurses and other health educators.

Multiple levels of influence in the adoption of sun protection policies in elementary schools in Massachusetts.

OBJECTIVE: To understand the factors that may influence sun protection policy development if the Centers for Disease Control and Prevention guidelines are to be realized. DESIGN: Qualitative research methodology incorporating a socioecological framework using individual or small-group interviews, surveys, and environmental assessments with school superintendents, elementary school principals, elementary school nurses, and parent-teacher organization presidents and co-chairs as well as coding of school documents. SETTING: Elementary schools in Massachusetts. PARTICIPANTS: Nine school superintendents, 18 elementary school principals, 18 elementary school nurses, and 16 parent-teacher organization presidents or co-chairs. MAIN OUTCOME MEASURES: Presence of school sun protection policies, sun protection curriculum, and communication portals for sun protection information to parents. RESULTS: None of the schools in the 9 districts had a sun protection policy, and only 1 had any type of sun protection curriculum. However, nearly all principals were receptive to developing sun protection policies and to making structural changes to increase the amount of accessible shade if funding were available. CONCLUSIONS: The schools' communication infrastructure could provide a key portal for disseminating sun protection information to parents. Although there are other resources that could be brought to bear, many challenges must be surmounted to develop effective sun protection policies.