bluuebunny/crossref_metadata_2025 huggingface dataset:
Survivorship care plans: Strategies to enhance patient utility and value.
Authors: Harris Diana , Stricker Carrie Tompkins , Walker Deb , Katzman Amanda , Still Nadia , Digiovanni Laura , Finitsis David , Salner Andrew L. , Dornelas Ellen A
Published: March 2017

75

Background: A decade ago the Institute of Medicine (IOM) recommended that every survivor receive a survivor care plan (SCP), yet despite endorsements of clinical merit, evidence of their effectiveness is inconsistent, and patient satisfaction with, use of, and perceived utility of SCP’s remains unclear. Methods: This ongoing multicenter pilot enrolls breast cancer (BC) patients who have recently completed active treatment. Patients complete an electronic patient reported outcomes (ePRO) survey via the Carevive Care Planning System (CPS), which is combined with clinical data to electronically generate tailored care plans with survivorship and symptom-specific recommendations (i.e. follow-up care, self-management, supportive care referrals) in real-time. Patients receive their care plan at a consultative survivorship visit. Approximately 6-weeks following SCP receipt, patients complete a survey to evaluate satisfaction Results: Over 200 patients have received SCPs to date; 101 have completed follow-up surveys. Patients are on average 59 years old (Range: (33-84 yo), female (100%), and with 0-III stage BC. Study outcomes include patient-reported use and helpfulness of, as well as satisfaction (1-5 Likert scale items) with, their SCP. On average, patients were “very satisfied” with their SCP overall (M = 4.08), and 90% (n=90) would, “recommend other women receive a similar care plan after cancer treatment”. In addition to majority of patients (99%) having read or planning to read the SCP carefully, the three most frequently cited ways for use/planned use of the SCP include to: inform about symptoms (90%); speak with healthcare professionals about concerns (88%); and help identify information online (86%). Seventy-two (78%) patients and 68 (74%) reported that SCP’s were most useful to helping them make changes in what they ate and types of exercises, respectively. Conversely, 51 (58%) of patients and 47 (59%) of patients reported that the SCP was most useful to helping them find support resources and talking about personal cancer experience with family members. When asked to recall what recommendations their SCPs endorsed, patients most commonly recalled surveillance recommendations (e.g. follow up visits (83%), mammograms (80%), compared to recommendations specific to reported concerns and symptoms (e.g, management of sexual concerns (31%), evaluation and management of lymphedema (27%)). Conclusions: n/a
From common sense to evidence-based: An evaluation of survivorship planning.
Authors: Gaster Sam
Published: March 2017

76

Background: The Institute of Medicine’s (IOM; 2005) seminal report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommended survivorship care plans (SCPs) as a common sense approach to improve the care of cancer survivors. The American Society of Clinical Oncology (ASCO; Mayer et al., 2014) reiterated the importance of these plans and provided strategic guidance for their implementation. The American College of Surgeons’ Commission on Cancer requires SCP delivery from accredited cancer programs as of 2015. Despite the push from these organizations, SCPs remain understudied (Mayer, Birken, Check, & Chen, 2014). The impact of SCPs on patient outcomes is poorly understood. Additionally, there is limited data on patients’ preferences for SCPs. This evaluation describes the use and assessment of SCPs at six regional cancer centers in the Midwest. Methods: Feedback was collected from 30 cancer survivors after receipt of a SCP. Responses were collected with 22-item questionnaire. Outcomes included survivors’ satisfaction with the clarity and detail of SCPs, likelihood to use SCPs in the future, intention to share SCPs with other health care providers, and perceived knowledge about treatment and follow-up care. Results: Over 75% (n = 23) of survivors agreed that SCPs were easy to understand. Ninety-three percent (n = 28) of survivors indicated that SCPs contained the right amount of information. Fifty-three percent (n = 16) of survivors are very likely to use their SCP in the future, whereas 47% (n = 14) are somewhat likely to use their SCP in the future. The majority (77%; n = 23) of survivors intend to share their SCP with another health care provider. Ninety-seven percent (n = 29) of survivors felt more knowledge about their treatment and follow-up car as a result of receiving a SCP. Conclusions: This evaluation highlights the many benefits of SCPs for cancer survivors. Results suggest that SCPs educate survivors about their treatment and follow-up care. Additionally, results indicate that many survivors intend to share SCPs, perhaps allowing for better coordination between oncology and primary care. Further research is warranted on the adoption of healthy lifestyle behaviors and receipt of routine health care after delivery of SCPs.
Finding common ground: Aligning institutional and survivorship steering committee (SSC) goals.
Authors: Ward Andrew Joseph , Bell John , Jerkins Lindsey
Published: March 2017

80

Background: Developing a Survivorship program goes beyond providing survivorship care plans to patients upon completion of cancer treatment. Programs can take many forms; ranging from very robust with long-term follow-up to minimal, with patients returning to the primary care provider when cancer-specific treatment is complete. To develop our program at an academic medical center with 2900 annual new cancer patients, we chose to enlist a SSC of survivors to help shape our program. Methods: In addition to fulfilling the American College of Surgeons Commission on Cancer Standard 3.3 requirements, we also desire to meet the needs of the patient. Thus, the survivorship program coordinator requested that providers within the Cancer Institute (CI) identify patients to form a SSC. 13 physicians contributed a total of 14 patients as candidates. Each patient was invited to participate and 7 accepted. The initial SSC meeting was held 6 months after initiation of our survivorship program. Results: SSC members represented 5 different primary malignancies and had varying degrees of experience within the treatment continuum. The initial meeting began with an overview of the current services available in the CI. Members were also given the opportunity to share treatment & survivorship experiences. Some of the SSC members utilized patient navigation during CI initial intake; others had experience with CI support groups. Some used ancillary services such as physical therapy, integrative health, financial counselors, and social services; others were not aware these services were available. A list of 4 categories of goals for program development was suggested with a meeting planned again in one year to review progress. Meeting one year later, the group determined progress was made in 3/4 (75%) of the goals. Conclusions: When creating a Survivorship program, patient goals should be considered and aligned with institutional and accreditation goals. One way to ensure that this is accomplished is to enlist front-end input from a SSC that represents a wide variety of treatment experiences and providers. In our experience, this strategy leads to alignment of patient and programmatic goals resulting in increased patient satisfaction and program quality.
Feasigility study using tablet PC for assessment of quality of life and risk factors of breast cancer survivors.
Authors: Koh Su-Jin , Choi Yunsuk , Kim Chung Reen , Ju Hee Kim
Published: March 2017

81

Background: The aim was to assess the feasibility of using tablet PC for assessment of risk of breast cancer recurrence and primary cancer, physical and psychological effect of breast cancer and treatment, health promotion at first visit among breast cancer survivors. Methods: The prospective study was carried out in the survivorship clinic, university teaching and tertiary referral hospital. After clearance from the Institutional Review Board, 40 breast cancer patients first visiting survival clinic received surgical treatment and adjuvant chemotherapy were included in the study after informed written consent, irrespective of the age and stage of disease. The patients were answered as per quality of life, physical function and activity, pain, fatigue, anxiety and depression, distress by using tablet PC. We evaluated the information of education, marriage, job, economic status and health, knowledge about management of cancer survivors, feasibility (difficulty, simplicity, necessity, comfort, satisfaction, recommendation) of using tablet PC and difficulty of the questionnaire in understanding, psychological, social and documenting aspect. Results: Most of patients using tablet PC agree with easy (85.7%), simplicity (75.4%), necessity (75.5%), comfort (72.1%), satisfaction (83.9%), recommendation to others (77.8%). Age over 60 years (83% vs 96%, p=0.037), general health status (r=0.491, p=0.001) affect to the difficulty of using tablet PC. And age, knowledge, education, general health status affect to the understanding of questionnaire. In multivariation analysis, educational status (elementary school (β=-0.312, p= 0.016), middle school (β=-0.452, p=0.001) and general health status (β=-0.344, p=0.010) affect to the understanding of questionnaire. Conclusions: We can use tablet PC in outpatient cancer surviors clinic effectively. But we need careful evaluation for who are not good in general health status.
Online social network use among parents of young childhood cancer survivors.
Authors: Wilford Justin Gregory , Osann Kathryn , Wenzel Lari B.
Published: March 2017

82

Background: Online social networks (OSNs) have emerged in the past decade as potentially powerful tools for health information sharing and health behavior change. According to a recent study by the Pew Research Center, 75% of all parents are active on OSNs. Given the high level of need for childhood cancer survivorship health education and preventive health behavior change, OSNs represent key resources for parents to engage with experts and peers over survivorship health. Methods: A cross-sectional survey of 114 parents of young and adolescent ( < 13 years) childhood cancer survivors was used to examine parent OSN use in specific platforms. Recruitment was conducted through online social support groups of two childhood cancer non-profits that focus on parent support. The novel online survey investigated OSN frequency of use, history of making new friends in OSNs, and whether OSNs were “good for sharing and receiving reliable and high quality information on diet, physical activity, and other healthy behaviors.” Results: Parents reported high levels of OSN use with 80% reporting daily use. Facebook was the most commonly used OSN by a wide margin. Seventy-eight percent of parents reported using it every day. The next most used OSN was Instagram (15%). Parents reported making new friends on Facebook (86%), followed by Instagram (22%) and Twitter (10%). Among parents who have used the respective OSNs, several were endorsed as being “good” or “extremely good” for sharing survivorship-related preventive health information. Facebook was endorsed by 76% of its users, Twitter and Pinterest by 59%, Google+ by 52%, and Instagram by 40%. None of the demographic variables collected predicted parent OSN use or perception. There was a strong association between parents using OSNs daily and their reporting having made new friends on OSNs (p < .000). Conclusions: Parents of young childhood cancer survivors recruited from online support groups report high levels of OSN use and making new friends through OSNs, and find OSNs potentially good sources for sharing and receiving survivorship-related health information. OSNs in general, and Facebook in particular, represent promising avenues for childhood cancer survivorship health information dissemination.
The transition from treatment to follow-up care: A critical time for patient navigation.
Authors: Gaster Sam , Sanem Rita , Jones-Larson Diane , Fiegen Jordan , Arens Jamie
Published: March 2017

83

Background: There are many points of transition in cancer care, and each presents a unique set of challenges for patients and providers (Nekhlyudov, Levit, Hurria, & Ganz, 2014). This includes the transition from treatment to follow-up care, or the transition to survivorship. For patients, challenges include the need for continued support, education, and communication with the cancer care team. For providers, challenges include the management of late- and long-term effects, modification of health behaviors, and coordination with other providers (IOM, 2005). These challenges can be overcome with patient navigation services. However, survivors’ access to these services is not universal. This evaluation describes the implementation and assessment of these services at six regional cancer centers in the Midwest. Methods: Key stakeholders designed a protocol for survivors to receive patient navigation after their transition to follow-up care. These navigation services are provided by nurse and social work navigators, and involve placing outbound calls to survivors. These contacts occur approximately two weeks after survivors receive a survivorship care plan (SCP) and a needs assessment. Results: From August through September 2016, 33 (91.67%) survivors were contacted by patient navigators. Three survivors could not be reached. Twenty-one percent (n = 7) of survivors contacted had not previously received navigation services. However, all survivors contacted received navigation services that would not otherwise been provided. Contacted survivors expressed high satisfaction with the services, and the most common needs addressed were anxiety and fatigue. Conclusions: Results support the value of patient navigation services for cancer survivors. This evaluation describes the successful implementation of a protocol for the continued navigation of survivors after their transition to follow-up care. Results encourage further development and evaluation of this protocol, including its impact on symptom management, health promotion, and care coordination via referrals and the provision of education and resources.
Information when patients participate in a phase I trial: A systematic review.
Authors: Gad Katrine Toubro , Lassen Ulrik Niels , Mau Sorensen Paul Morten , Høybye Mette Terp , Johansen Christoffer
Published: March 2017

85

Background: While phase I trials are essential for the development of new anticancer drugs, there is a limited chance of benefitting for cancer patients participating in such trials. The information dialogue is therefore of substantial importance for providing a foundation to make a decision, and the support from relatives of potential value for the patient. This systematic review investigated patients’ prerequisites for deciding to participate in a phase I trial by summarizing the existing knowledge regarding patients’ decision-making when entering a phase I trial, and patients’ and their relatives’ perception of the information prior to enrollment. Methods: The review is based on the principles of Preferred Reporting Items for Systematic Reviews. A comprehensive systematic search was performed using the PubMed, Embase and PsycInfo databases and supplemented by a search for unpublished literature. Results: We identified 36 studies for inclusion in this review. When patients are offered participation in a phase I trial, information procedures as well as the patients’ individual approach influence the decision-making and the perception of the information provided. Across the studies exploring patients’ perception of information, there was a limited understanding of trial purpose and unrealistic expectations of benefit. The relatives’ perception of information remains unexplored. Evaluation of the included studies demonstrated a comprehensive risk of bias in the majority of studies. Conclusions: The information dialogue between physician and the patient concerning participation in a phase I trial seems to benefit from exact information taking account of the perspectives for each individual patient as well as the need for further discussion of trial. While relatives intuitively function as resources for patients entering a phase I trial, this topic is still not investigated.
Development of the medical appointment planner.
Authors: Clayton Margaret , Ellington Lee , Mooney Kathi
Published: March 2017

86

Background: Breast cancer survivors experience multiple physical and emotional symptoms. Difficulties occur when women cannot effectively present questions and concerns during surveillance visits resulting in unmet needs and unanswered questions. Methods: The Medical Appointment Planner (MAP) is a structured visit preparation approach providing communication skills to facilitate presentation of a woman’s symptoms/concerns to medical providers. MAP was developed sequentially in 4 phases: Phase 1) Focus groups explored women’s issues during surveillance visits. Phase 2) Feasibility pilot, using paper-pencil delivery. Phase 3) IPad feasibility, usability / satisfaction pilot. Phase 4) National trial pilot with Susan Love’s Army of Women comparing electronic MAP delivery to a usual care group developing question lists. Results: Focus Groups. A major theme was “difficult interactions with medical providers” especially presenting concerns. Paper-Pencil Feasibility. Eight women (age 30-79) used MAP for medical visit preparation; the average number of symptoms endorsed was 17 out of a possible 21. All women successfully used MAP to prepare for their upcoming medical visit. MAP was determined to be feasible with women asking for electronic delivery for ease of use. IPad Prototype: 26 women (age 40-80); Outcomes of symptoms, mood, uncertainty, and well-being, improved pre to post-visit. National pilot: 49 women (age 50-77); 21 in the MAP intervention group, 28 in the usual care group preparing questions pre-visit. No differences between groups in age or breast cancer stage were observed. After first use, women report MAP is helpful, and providers have reacted favorably to visit preparation with feasible electronic national delivery. The question list group also reports ease of program use. Conclusions: Across MAP pilot studies women report that MAP helps organize thinking, condense thoughts, and stay “on track”. Improving current practice that recommends preparing question lists before medical appointments; the structured MAP visit preparation approach teaches communication skills to facilitate presentation of symptoms and concerns to providers, enabling women to break into the medical “script” and get their symptoms/concerns addressed.
Development of a statin risk communication tool for use in cancer survivors: A pilot.
Authors: Raghunathan Nirupa Jaya , Korenstein Deborah , Anderson Nassim , Adsuar Roberto , Tonorezos Emily S. , Oeffinger Kevin C.
Published: March 2017

87

Background: There are currently over a million survivors of childhood, adolescent, and young adult (CAYA) cancer in the US, many of whom were treated with radiation therapy. Chest radiation with fields including the coronary arteries is a risk factor for cardiovascular disease (CVD). Of note, survivors are often unaware of this increased CVD risk or, if they are aware, do not know how to mitigate the risk. Visual aids and communicating risk in terms of absolute risk reductions are shown to improve patients’ understanding. The Institute of Medicine recommends use of decision aids to optimize patient discussions of benefits and harms of therapies. Our goal is to develop and pilot test a statin therapy risk communication tool for use in high-risk cancer survivors to improve shared decision making and patient knowledge of coronary artery disease risk. Methods: The Statin Risk Communication Tool, modeled after the validated Statin Choice decision aid, presents a pictorial representation of absolute risk of coronary heart disease risk in survivors of CAYA cancer treated with radiation to the chest. The intervention also presents data depicting absolute risk reduction of myocardial infarction with use of statins in similar risk populations (≥7.5% baseline risk). This pilot study compares the statin risk communication tool to usual care. The post-visit assessment uses Likert-like scales to explore patient perceptions of statin use, knowledge questions to assess patient understanding of the risks and benefits of using statins and the validated 16-item Decisional Conflict Scale to measure decisional satisfaction. We will also survey participants three months after introduction of the tool to ascertain statin use and attitudes towards the discussion of statins. Results: The timeline for data collection anticipates analyzable results by August 2017. Conclusions: This risk communication tool will be assessed for acceptability, knowledge enhancement, and decisional conflict. Additionally, we will gather qualitative data regarding usual care. With this information, a future randomized controlled trial across institutions could provide information on how CAYA survivors approach shared decision making with risk communication tools. Clinical trial information: NCT02895880.
Monitoring oral anti-cancer therapy adherence in cancer patients using web based application guided communication compared with nurse counseling in a community cancer center.
Authors: Dolezal Milana V. , Leong Vivian , Behl Rajesh
Published: March 2017

88

Background: Smart phone web based applications (apps) can be effective communication tools for monitoring compliance and increasing adherence to oral anti-cancer therapy in the outpatient setting. Methods: Cancer patients age 18-90 treated with various oral anti-cancer therapies were recruited to this prospective, 3 month observational trial at our large community cancer center to determine feasibility of using an app for oral anti-cancer therapy compliance. Enrolled patients are randomized to either Arm 1 App arm and nurse counseling or Arm 2 nurse counseling only. The free apps MyMeds and Medisafe incorporate medication reminders and record doses. Patients complete the validated RAND 36- item quality of life (QOL) questionnaire and a free text feedback. Results: 91 patients were screened between 11/2015 to 9/2016 (45 declined enrollment due to various factors). 46 patients were randomized with 25 to Arm 1 and 21 to Arm 2. Demographics included 10 men (various tumor types but mostly multiple myeloma) and 36 women; 22 with breast cancer. MyMeds app lacked the necessary real-time communication so patients were switched to the MediSafe app which features email alerts. 15 patients have completed the study through Month 3. Four patients on Arm 1 missing their monthly visit or were non-compliant with the app. 23 patients remain active in the study. Differences are a higher QOL score in Arm 1 vs Arm 2 in measured domains of Energy/Fatigue (56% in Arm 1 compared to 44% for Arm 2) and Pain (72% in Arm 1 compared to 58% in Arm 2). Patients randomized to the app found the electronic alerts very helpful. Conclusions: Our limited pilot study demonstrated the potential of smart device apps as effective communication tools for improving patients’ adherence to oral anti-cancer therapy and QOL. Ultimately, convenient ways to monitor patients’ compliance with anti-cancer therapy will impact survival and facilitate provider-patient communication.
Patient-provider communication during post-treatment breast cancer care: Findings from a pilot project.
Authors: Chawla Neetu , Sanchez Michael , Harpster Jayson , Manace Brenman Leslie , Liu Raymond
Published: March 2017

91

Background: Patient-provider communication is essential to delivering high quality cancer care, including post-treatment when survivors have many complex care needs. In this study, we used data collected for quality improvement from a small, feasibility sample to examine patient perceptions of provider communication and inform the development of a new Oncology Survivorship Clinic model. Methods: As part of a pilot project conducted at Kaiser Permanente Northern California (KPNC), we surveyed 51 breast cancer patients post-treatment. The survey included a communication measure from the 2011 Medical Expenditure Panel Survey (MEPS) Experiences with Cancer survey evaluating provider discussions of: surveillance for recurrence; late or long-term treatment effects; healthy lifestyle behaviors; and emotional or social needs. We also examined reports of the six core functions of patient-centered communication (i.e. managing uncertainty, responding to emotions, making decisions, fostering healing relationships, enabling self-management, and exchanging information) using a measure from the Health Information Trends Survey (HINTS) survey. Part of the purpose was to evaluate acceptability of a new Oncology Survivorship Clinic utilizing non-physician providers. Results: The sample included 51 breast cancer patients surveyed in 2016 within six months of treatment completion. Overall, sizable proportions received detailed communication about surveillance (65%), treatment side effects (46%), emotional needs (41%), and healthy lifestyles (71%) and the majority received patient-centered communication (range: 60-73% based on core function). Particular gaps were noted related to provider communication about treatment side effects (54%), emotional/social needs (59%), managing uncertainty (35%), and responding to emotions (40%). Conclusions: Our very preliminary findings suggest that the majority of women had positive communication experiences, including with non-physician providers. However, clear communications gaps existed underscoring future avenues for research and care delivery interventions to address the comprehensive needs of breast cancer patients.
Development of a preliminary model of connectedness with healthcare providers for adolescents and young adults with cancer.
Authors: Phillips Celeste , Haase Joan
Published: March 2017

92

Background: Adolescents and young adults with cancer (AYA) have poorer outcomes than younger or older cancer patients. AYA survivorship outcomes are complicated by psychosocial late effects and engagement in risky lifestyle behaviors that may increase secondary cancers and other chronic illnesses. Earlier identification and enhancement of protective factors that foster healthy lifestyle behaviors is an NIH/NCI priority. Early connectedness with healthcare providers (HCPs) may diminish risk-taking behaviors and foster healthcare self-management in AYA survivors .The purpose of this presentation is to describe the processes of developing a preliminary model of connectedness with HCPs for AYA. Methods: A preliminary model of connectedness was initially derived from a concept analysis that systematically critiqued 28 peer-reviewed sources. The preliminary model of connectedness was then validated and expanded by results of a phenomenological study of AYA cancer survivors (n = 9) regarding their experience of connectedness with HCPs. Results: The concept analysis identified 7 critical attributes of connectedness: intimacy, belonging, empathy, caring, trust, respect, and reciprocity. Outcomes included: greater self-esteem, enhanced interpersonal skills, enhanced emotional adjustment, and greater identify exploration. Results of the phenomenological study uncovered two additional attributes of connectedness specific to AYA experiences of connecting with HCPs: a sense of gratitude and disconnectedness. The disconnectedness attribute indicated there are processes that can occur that either lead to an outcomes of sustained connectedness or disconnectedness. If AYA felt more connected (vs. disconnected) to their HCPs as a whole, then they continued to engage in long-term follow-up. On the other hand, if AYA felt more disconnected to their HCPs, it led to unwillingness to participate in long-term follow-up. Conclusions: A preliminary model of connectedness with HCPs for AYA was derived from two studies. This model can be used to help guide the development of interventions aimed at enhancing early connectedness and fostering long-term follow-up practices of AYA.
Comparative study of the perceptions of continuity of care of CRC survivors transitioned to primary care.
Authors: Sisler Jeffrey James , Nugent Zoann , Carpenter-Kellett Tara , Gingerich Joel Roger
Published: March 2017

96

Background: Colorectal cancer (CRC) patients are increasingly being discharged to a primary care provider (PCP) for follow-up care. This study used a pre-post design to evaluate the impact of the Moving Forward After Cancer(MFAC) program at CancerCare Manitoba on patient perceptions of continuity of care. Methods: The MFAC program was introduced in 2010 to support transfer of care to primary care and includes transitional appointments (TAs) and survivorship care plans. The pre-implementation (PRE) group was a random sample of patients on the provincial cancer registry diagnosed in 2008/09 with Stage II / III CRC. The post-implementation (POST) group was recruited in oncology clinics after their TA over four years starting in 2010. Both groups completed the same mailed survey. Respondents were asked to identify the main provider(s) of their follow-up care. Those indicating a PCP completed the Patient Continuity of Care Questionnaire (PCCQ) which assesses continuity upon discharge with scoring between 5 and 25. Quality of life, disease, treatment, and demographic data were collected. Results: There were 246 responses in the PRE group (rate of 68.3%) and 83 (66%) in the POST. The POST group was significantly younger, more urban and further from diagnosis. It included more Stage III and rectal cancer patients who received more treatment. Comparing the subset of both groups (106 vs 65) who described a PCP as a main provider, the POST group demonstrated higher scores on the PCCQ (24.0 v 22.8, p=0.0065) and on two of its subscales. This finding persisted when tested for the impact of differences between the two groups in stage, site, age and treatment. The most common pattern of provider involvement in follow-up was the “FP alone,” which rose from 19% in the PRE group to 54% in the POST (p<0.0001). The proportion of participants who felt “adequately prepared” for their transfer of care was significantly increased (71 vs 91%, p=0.003). Conclusions: A formal information sharing process with CRC patients at time of transition to primary care follow-up improved their evaluation of continuity of care. Significant shifts were seen in the locus of care from oncology to primary care settings consistent with the intent of the MFAC program.
Patient preferences for provider roles in collaborative breast cancer survivorship care.
Authors: Wallner Lauren P. , Li Yun , Friese Christopher Ryan , Ward Kevin C. , Hamilton Ann S. , Jagsi Reshma , Katz Steven J. , Hawley Sarah T.
Published: March 2017

99

Background: Prior studies have explored barriers to collaborative cancer care and suggest a need for greater clarity about clinician roles. However, little is known about patient’s preferences and expectations for which clinicians handle various aspects of care after primary cancer treatment. Methods: A weighted random sample of patients newly diagnosed with breast cancer in 2014-15 as reported to the Georgia and Los Angeles SEER registries were surveyed approximately 6 months after diagnosis (N = 2,342, 70% response rate). Patient preferences for which clinician handles the following aspects of care after treatment were ascertained: follow-up mammograms, screening for other cancers, general preventive care, treatment of comorbidities and reassurance about their breast cancer. Response categories included primary care clinician (PCP), cancer doctors, either or both. The associations between patient demographic and clinical factors with preferences for clinician roles were assessed using multinomial logistic regression. Results: The majority of women preferred to see oncologists for mammograms (65%), other cancer screening (64%), and reassurance about their cancer (69%), and PCPs for general preventive care (76%) and comorbidity care (79%). Black women and Hispanic women (vs. White) were more likely to prefer to see both clinicians (vs. PCP) for mammograms (Black OR: 2.8, 95%CI: 1.5, 5.1; Hispanic OR: 1.9, 95%CI: 1.1, 3.3), screening for other cancers (Black OR: 3.3, 95%CI: 1.8, 6.1; Hispanic OR: 1.8, 95%CI: 1.0, 3.1), general preventive care (Black OR: 3.5, 95%CI: 2.0, 6.0; Latina OR: 2.5, 95%CI: 1.4, 4.3) and comorbidity care (Black OR: 2.1, 95%CI: 1.3, 3.6; Hispanic OR: 2.0, 95%CI: 1.2, 3.3). Less than a high school education was also associated with a preference for seeing both clinicians for mammograms. Conclusions: While patients report clear preferences for which clinicians handle various aspects of their collaborative survivorship care, variation exists by race and education. Targeting these patients to clarify clinician roles may be particularly effective in interventions to improve collaborative cancer care.
Crafting a Site of State Information Management
Authors: Fulton Robert
Published: March 2017

This article explores France's Dépôt de la Guerre as an intentional site of preservation of military information specifically through the examination of archival inventories constructed during the first thirty years after the Dépôt's creation. The Dépôt was examined as a “knowledge management center” in a growing information state, using differing concepts of archival construction. An evaluation of three early inventories reveals administrative processes of selective organization and categorization, illustrating the risks of incomplete collection and preservation. This examination adds to the historical analysis of practices of government information management and the growth of an information state through an assessment of collection, loss, or deliberate destruction of information and even knowledge itself. However, the example of the Dépôt suggests that the underlying purpose and defined goals of any archive dramatically affect what it actually stores and how it conceives of useful knowledge.

Cet article examine le Dépôt de la Guerre comme un site intentionnel de conservation de l'information militaire, notamment en fouillant des inventaires d'archives construites au cours des trente premières années après la création du Dépôt. Le dépôt a été un « centre de gestion du savoir » dans un Etat informateur que nous examinons à partir de plusieurs conceptions différentes de la construction d'archives. Une évaluation des trois premiers inventaires révèle les processus administratifs d'organisation sélective et de catégorisation, illustrant les risques de collection et de conservation incomplètes. Par ce biais, cet article contribue à l'analyse historique des pratiques de gestion de l'information gouvernementale et de la montée d'un Etat informateur en considérant la collection, la perte, ou la destruction délibérée des informations et même du savoir. Cependant, l'exemple du Dépôt suggère que le but fondamental et les objectifs définis d'une archive modifient considérablement ce qu'elle accumule et ce qu'elle entend par « savoir utile ».
The Dream Machine
Authors: Λιναρδής Απόστολος , Κονδύλη Δήμητρα
Published: March 2017

Η παρούσα εργασία υιοθετεί ως θεωρητικές συνισταμένες τους κανόνες που τέθηκαν στο έργο Metanet, το διεθνές πρότυπο τεκμηρίωσης Data Documentation Initiative 3, τις μεθοδολογικές διαδικασίες που ακολουθήθηκαν στη διεθνή έρευνα για τις δεξιότητες ενηλίκων PIAAC καθώς και τις νέες προϋποθέσεις του ευρωπαϊκού πλαισίου έρευνας για την επαναχρησιμοποίηση, μακροπρόθεσμη διατήρηση και αρχειοθέτηση των δεδομένων που συλλέχθηκαν, δημιουργήθηκαν ή έτυχαν επεξεργασίας στο πλαίσιο ενός έργου, προκειμένου να περιγράψει ένα ιδεατό σύστημα αναφορικά με τα κοινωνικά δεδομένα. Το ιδεατό σύστημα που επιχειρούμε  να περιγράψουμε θα επιτρέπει στους χρήστες τον σχεδιασμό και τη διεξαγωγή μιας έρευνας, την αποτελεσματική αρχειοθέτηση και διαχείριση των δεδομένων της, καθώς και τη διάχυση αποτελεσμάτων, δεδομένων και σχετικής τεκμηρίωσης προς δευτερογενή χρήση.
A collection of annotated and harmonized human breast cancer transcriptome datasets, including immunologic classification
Authors: Roelands Jessica , Decock Julie , Boughorbel Sabri , Rinchai Darawan , Maccalli Cristina , Ceccarelli Michele , Black Michael , Print Cris , Chou Jeff , Presnell Scott , Quinn Charlie , Jithesh Puthen , Syed Najeeb , Al Bader Salha B.J. , Bedri Shahinaz , Wang Ena , Marincola Francesco M. , Chaussabel Damien , Kuppen Peter , Miller Lance D. , Bedognetti Davide , Hendrickx Wouter
Published: March 2017

The increased application of high-throughput approaches in translational research has expanded the number of publicly available data repositories. Gathering additional valuable information contained in the datasets represents a crucial opportunity in the biomedical field. To facilitate and stimulate utilization of these datasets, we have recently developed an interactive data browsing and visualization web application, the Gene Expression Browser (GXB). In this note, we describe a curated compendium of 13 public datasets on human breast cancer, representing a total of 2142 transcriptome profiles. We classified the samples according to different immune based classification systems and integrated this information into the datasets. Annotated and harmonized datasets were uploaded to GXB. Study samples were categorized in different groups based on their immunologic tumor response profiles, intrinsic molecular subtypes and multiple clinical parameters. Ranked gene lists were generated based on relevant group comparisons. In this data note, we demonstrate the utility of GXB to evaluate the expression of a gene of interest, find differential gene expression between groups and investigate potential associations between variables with a specific focus on immunologic classification in breast cancer. This interactive resource is publicly available online at:http://breastcancer.gxbsidra.org/dm3/geneBrowser/list.
An introduction to Helicobacter pylori
Authors: Winter George
Published: March 2017

George Winter, freelance journalist and Fellow of the Institute of Biomedical Science, gives an overview of the Helicobacter pylori bacterium
How can ‘good health visiting’ be measured?
Authors: Dobson Amy
Published: March 2017

Amy Dobson is constantly striving to be a good health visitor; here she reflects on what this really means. How do we know we are truly making a difference?
Count to the beat
Authors: Harries Judith
Published: March 2017

In the first of a series using music to bring maths to life, Judith Harries focuses on beats and rhythm to develop children's counting and sequencing skills, which include counting backwards and forwards in time.
Wild about art
Authors: Williams Kate
Published: March 2017

With the arrival of spring, now is the time to get outdoors to your nearest green area to start making art with natural objects. Try these ideas for creating hand-printed trees and free-style finger paintings.
Me and my Gran
Authors: Hampshire Vivien
Published: March 2017

Use picture books to explore the idea of family bonds. My Grandparents Love Me by Claire Freedman is a fantastic starting point for conversations about what makes times spent with them so special.
Surprise, surprise!
Authors: White Hilary
Published: March 2017

Introduce children to the excitement of discovering ‘hidden things’ and link picture books with a discovery theme to events in their own life. Can they understand how one clue leads to another?
‘People try and police your behaviour’: the impact of surveillance on mothers and grandmothers’ perceptions and experiences of infant feeding
Authors: Grant Aimee , Mannay Dawn , Marzella Ruby
Published: March 2017

Pregnancy and motherhood are increasingly subjected to surveillance. Research has highlighted that public breastfeeding is difficult to navigate within existing constructs of acceptable femininity, but at the same time, mothers who formula feed are often located within discourses of the failed maternal subject. This article draws on intergenerational research with six mother/grandmother pairs from marginalised urban Welsh locales, which involved elicitation interviews around the everyday artefacts that participants presented to symbolise their experiences of motherhood and infant care. We examine the negotiation of acceptable motherhood in relation to the intrusive policing of lifestyle choices, consumption and infant feeding from family, friends and strangers. The article argues that the moral maze of surveyed motherhood renders infant feeding a challenging, and challenged, space for women.
‘We’re not related in any way, only by blood’: Danish sperm donors and (imagined) relationships
Authors: Wheatley Alison
Published: March 2017

New reproductive technologies have allowed for a disruption of traditional kinship networks through the broadening of who is considered related. In this article, I explore Danish sperm donors’ accounts of relatedness and how they situate themselves within the networks that are formed — or have the potential to be formed — through donor insemination. This includes the ways in which they imagine their (potential) offspring and the recipients of their sperm, as well as negotiations with their romantic partners and other family members. The donors drew on narratives of ‘the knock on the door’ and pop-cultural representations of (donor) fatherhood to understand their position and to frame relationships in particular ways. Donors regularly decoupled the social and the biological in their accounts while at the same time placing genetic relationships firmly at the centre of them.
Storylining engagement with repulsive antiheroes. Towards a cognitive poetics of TV serial drama narrative: The case of Gomorrah – The Series
Authors: Russo Paolo
Published: March 2017

The unprecedented success of Italian crime drama serial Gomorrah – The Series (2014–present) has spurred much interest in the industry as well as a lively critical debate. Little attention, however, has thus far been paid to the creative process behind the series. This article contributes to filling this gap by investigating the branding strategies and the writing strategies that have informed the development process. Particular emphasis is given to the analysis of the storylining techniques employed in the development of the arcs of Season 1 with a view to unpacking how, in turn, these determine mechanisms of the viewers’ engagement with characters. As typical of much contemporary serial dramas, these are predominantly antiheroes and therefore our allegiance to them is questioned when problematic issues are raised, as in the case of violent actions and dubious moral choices. The investigation combines three interplaying methodologies – a genetic approach, close textual (quantitative and qualitative) analysis and a cognitive theoretical framework – to offer a general poetic model for analysing serial narrative. While the article deals with one particular case study, the more general aim is to contribute to developments in the field of cognitive studies of serial drama, with a specific focus on creative development and writing practices.
Puberty onset in rural and urban children
Authors: Saputra Hariadi Edi , Hakimi Hakimi , Deliana Melda , Lubis Siska Mayasari , Arto Karina Sugih
Published: March 2017

Background Accelerated pubertal onset has been reported in recent years. Environmental factors are assumed to influence this condition.Objective To assess differences in pubertal onset between children in rural and urban areas, as well as to evaluate body mass index (BMI) and socioeconomic status that affect pubertal onset.Methods This cross-sectional study was conducted in July 2010 at junior high schools in Mandailing Natal and Medan, North Sumatera. Data were collected with purposive sampling of children aged 8 to 13 years. Sexual maturity was assessed by Tanner stage and risk factors was determined by questionnaires. The comparison between pubertal onset in rural and urban areas was assessed by Mann-Whitney U test. The relationships between nutritional status, socioeconomic status, sexual maturity, and pubertal onset were assessed by Spearman’s correlation.Results Eighty-four subjects (38 boys and 46 girls) from a rural area and 87 subjects (40 boys and 47 girls) from an urban area participated in this study. There were significant differences in mean pubertal age of onset between subjects living in rural vs. urban areas, for both girls and boys [girls: 10.2 vs. 9.5 years, respectively (P=0.008); boys: 11.7 vs. 10.1 years, respectively, (P=0.001)]. We found weak negative correlations between BMI and pubertal onset in boys (r=-0.246; P=0.03) and in girls (r=-0.548; P=0.001). We also found weak negative correlations between socioeconomic status and  pubertal onset in boys (r=-0.406; P=0.0001) and in girls (r=-0.575; P=0.001).Conclusion Pubertal onset is faster in girls and boys who lived in an urban area.  There are negative correlations between BMI and socioeconomic status with pubertal onset.
Práticas de leitura no Ensino Fundamental: relato de experiência a partir do trabalho com estratégias de leitura.
Authors: Suriano Edivana Cássia Munhoz , Peres Aparecida De Fatima , Greco Eliana Alves
Published: March 2017

Este artigo relata uma experiência de compreensão leitora desenvolvida em contexto escolar, aplicada em uma turma do Ensino Fundamental II da rede pública. O trabalho surgiu a partir de uma proposta da disciplina Aspectos Sociocognitivos e Metacognitivos da Leitura e Escrita, do Mestrado Profissional em Letras (PROFLETRAS UEM-PR), e tem como principal escopo teórico e metodológico as estratégias de leitura de Solé (1998). Seguem-se também pressupostos de Leffa (1996), Geraldi (2012) e Thiollent (2011). Os processos de investigação e aplicação propostos e desenvolvidos por este trabalho possibilitaram um diagnóstico analítico do ensino e da aprendizagem de Língua Portuguesa referente ao planejamento e ao desenvolvimento da leitura em sala de aula. Este artigo relata uma experiência de compreensão leitora desenvolvida em contexto escolar, aplicada em uma turma do Ensino Fundamental II da rede pública. O trabalho surgiu a partir de uma proposta da disciplina Aspectos Sociocognitivos e Metacognitivos da Leitura e Escrita, do Mestrado Profissional em Letras (PROFLETRAS UEM-PR), e tem como principal escopo teórico e metodológico as estratégias de leitura de Solé (1998). Seguem-se também pressupostos de Leffa (1996), Geraldi (2012) e Thiollent (2011). Os processos de investigação e aplicação propostos e desenvolvidos por este trabalho possibilitaram um diagnóstico analítico do ensino e da aprendizagem de Língua Portuguesa referente ao planejamento e ao desenvolvimento da leitura em sala de aula.
Ensino de leitura: uma proposta para o desenvolvimento da habilidade de inferir
Authors: Silva da Guarda Maria Lucia , Pereira Monalisa Dos Reis Aguiar
Published: March 2017

Este artigo tem como objetivo contribuir com o ensino e a aprendizagem da leitura, apresentando uma proposta de intervenção que visa ao desenvolvimento da inferência, habilidade fundamental nos processos que envolvem compreensão textual. Esta proposta se constitui por sequências de atividades que foram produzidas a partir de anúncios publicitários, gênero que possibilita o trabalho com inferências por, dentre outras razões, apresentar linguagem metafórica e jogo de palavras que permitem a busca do implícito por meio dos explícitos. Para a consecução desta proposta, seguindo princípios metodológicos da perspectiva etnográfica e da pesquisa-ação, investigamos os problemas de leitura de uma turma do 6º ano do Ensino Fundamental II e, após análise dos dados, elaboramos nossa proposta de intervenção. Do ponto de vista teórico, buscamos fundamentos nas ideias de Kleiman (2013), Kock (2013) e Marcuschi (2008). Os resultados apontaram significativa melhora no desempenho dos alunos em relação à leitura e revelaram que as habilidades trabalhadas foram desenvolvidas a contento – em especial a inferência, a qual foi pormenorizada.