Meeting the Information and Support Needs of Blood Cancer Patients and Caregivers: A Longitudinal Study of a Model of Patient-Centered Information Delivery.

Access to reliable, up-to-date information and resources can assist individuals managing and living with cancer. The Leukemia & Lymphoma Society, through its Information Resource Center, provides personalized information and support to individuals affected by blood cancer. To examine its value and impact, we conducted qualitative interviews (n = 18) and an online survey of patients and caregivers (N = 515) after they talked with an Information Resource Center Information Specialist by phone, with a follow-up survey about 6 months later. Respondents most commonly contacted the Information Resource Center to get referrals to support programs (40.4%) and to obtain information about getting a second opinion (36.5%) and financial assistance (36.2%). After talking with an Information Specialist, respondents felt more hopeful (85.9%), more confident in managing care (82.9%), and more knowledgeable about their diagnosis (49.5%) and financial resources (42.4%). After speaking with an Information Specialist, respondents changed how they advocated for themselves/loved one (23.8%), changed how they communicated with doctors/other providers and family/friends (both 15.9%), received financial assistance (22.2%), and took other actions. Among respondents who took actions, most said that the conversation(s) had positively impacted the action. Respondents who spoke with an Information Specialist more than once were more likely to report positive impacts, including changing how they advocate for themselves/loved one and communicate with providers (both p < 0.05). Respondents diagnosed more recently were also more likely to report positive impact, including changing the way they communicate with providers (p < 0.05). Findings highlight the value of cancer helplines and suggest ways they can be most effective.

Standardized Tobacco Assessment for Retail Settings (STARS): dissemination and implementation research.

OBJECTIVE: The Standardized Tobacco Assessment for Retail Settings (STARS) was designed to characterise the availability, placement, promotion and price of tobacco products, with items chosen for relevance to regulating the retail tobacco environment. This study describes the process to develop the STARS instrument and protocol employed by a collaboration of US government agencies, US state tobacco control programmes (TCPs), advocacy organisations, public health attorneys and researchers from the National Cancer Institute's State and Community Tobacco Control (SCTC) Research Initiative. METHODS: To evaluate dissemination and early implementation experiences, we conducted telephone surveys with state TCP leaders (n=50, response rate=100%), and with individuals recruited via a STARS download registry on the SCTC website. Website registrants were surveyed within 6 months of the STARS release (n=105, response rate=66%) and again after ∼5 months (retention rate=62%). RESULTS: Among the state TCPs, 42 reported conducting any retail marketing surveillance, with actual or planned STARS use in 34 of these states and in 12 of the 17 states where marketing surveillance was not previously reported. Within 6 months of the STARS release, 21% of surveyed registrants reported using STARS and 35% were likely/very likely to use it in the next 6 months. To investigate implementation fidelity, we compared data collected by self-trained volunteers and by trained professionals, the latter method being more typically in retail marketing surveillance studies. Results suggest high or moderate reliability for most STARS measures. CONCLUSION: The study concludes with examples of states that used STARS to inform policy change.

Factors involved in the collaboration between the national comprehensive cancer control programs and tobacco control programs: a qualitative study of 6 States, United States, 2012.

INTRODUCTION: Historically, federal funding streams to address cancer and tobacco use have been provided separately to state health departments. This study aims to document the impact of a recent focus on coordinating chronic disease efforts through collaboration between the 2 programs. METHODS: Through a case-study approach using semistructured interviews, we collected information on the organizational context, infrastructure, and interaction between cancer and tobacco control programs in 6 states from March through July 2012. Data were analyzed with NVivo software, using a grounded-theory approach. RESULTS: We found between-program activities in the state health department and coordinated implementation of interventions in the community. Factors identified as facilitating integrated interventions in the community included collaboration between programs in the strategic planning process, incorporation of one another's priorities into state strategic plans, co-location, and leadership support for collaboration. Coalitions were used to deliver integrated interventions to the community. Five states perceived high staff turnover as a barrier to collaboration, and all 5 states felt that federal funding requirements were a barrier. CONCLUSIONS: Cancer and tobacco programs are beginning to implement integrated interventions to address chronic disease. Findings can inform the development of future efforts to integrate program activities across chronic disease prevention efforts.