bluuebunny/crossref_metadata_2025 huggingface dataset:
Barriers and Opportunities in Genetic Testing for BRCA Gene Mutations in Europe: A Strategic Policy Response to Support Women and Families At Risk for Breast Cancer
Authors: Ahmed S. , Tate J. , Thrift-Perry M. , Wait S.
Published: September 2018

Background and context: An estimated 12.5% of women are at risk for breast cancer. 5%-10% of these cases are hereditary, and of these, 20%-25% are due to BRCA gene mutations. Women with BRCA mutations are at higher risk of early onset, recurrence and of triple-negative breast cancer, with fewer treatment options. These women need to be supported to seek genetic testing as early as possible. They also need support and guidance to inform family members, consider preventive interventions and obtain appropriate care and counseling. Aim: To provide an overview of the BRCA genetic testing policy landscape in Europe and highlight barriers to women and their families to access testing, information and support. Strategy: A pragmatic review of international published and gray literature. With a focus on Europe and Israel, we looked for epidemiologic data in six countries and assessed the systems, policies and services in place for genetic testing, counseling and care. This was complemented by semistructured telephone interviews with healthcare professionals, researchers and patient representatives. Policy process: We must develop comprehensive cancer control plans that provide for high-quality prevention, treatment and care for all women with BRCA mutations, whether they develop breast cancer. The unmet needs of later-stage and more difficult-to-treat breast cancers, such as BRCA-mutated or triple-negative must not be neglected. Outcomes: Current BRCA genetic testing guidelines are insufficient. Testing eligibility is restricted to high-risk patients, despite evidence that over half of women diagnosed with BRCA-related breast cancer could be missed with this approach. Access barriers to information and services include: too few genetic counselors to provide information and support to women and their families; limited primary care genetics knowledge which may lead to low referral rates and unequal testing access based on region, age and race. Individuals may also forego testing for fear of discrimination by employers or insurance companies or the effect a positive test might have on families and relationships. What was learned: Opportunities to address the unmet needs of women considering BRCA genetic testing include: greater public awareness and understanding of testing; building professional capacity to better support those getting tested and policies to protect women against discrimination from employers or insurers. The emotional impact on women who undergo testing must also be considered, as well as the provision of appropriate information, support and care through every stage of a woman's experience. This research offers a starting point for discussion with policymakers and patient organizations to ensure pathways and policies are place which integrate the patient experience into comprehensive care pathways and national cancer control plans.
The Evolution of Cervical Cancer Control Program in Malaysia: Trials and Tribulations
Authors: Said Z.
Published: September 2018

Background and context: Cervical cancer remains a major burden to many countries worldwide particularly in underdeveloped and developing countries. It continues to have a huge impact on women not only physically but also socially and sexually. However, the good news, because of its slow progression and cytologic identifiable precursors and provided it is detected early and managed effectively, it is herald as one of the preventable and treatable forms of cancer. Despite the decades of awareness campaigns and progress in technology, the coverage and uptake remains low, more so among the younger and high risk women. Sadly too of those diagnosed, more than 76% were at stage II and above when intensive and invasive treatment will be required. Conventional Papanicolaou test is the only primary screening tool available since 1969 and it is considered the most successful cancer screening program to date. Nevertheless, cytology has its limitations especially technical limitations regarding sampling and laboratory errors in screening and interpretation. Noticing the laggardness of a single approach, Malaysia doubles up her strategy by introducing primary prevention using the HPV immunization to hasten reduction of cervical cancer. While Pap smear remain as a strategy, improving the quality of the laboratory services is paramount to ensure effective early detection of precancerous lesion. In 2015 the Ministry of Health introduced the liquid-based cytology in a phased implementation starting with Kelantan, Johor, Negeri Sembilan and Selangor gradually the whole country. Does HPV DNA testing be available soon to further enhance diagnosis? The topic has a fair share of several rounds of discussions. Aim: To share the latest challenge, gap, strategy and the way forward for the transformation of the cervical cancer prevention and control program comprehensively taking into consideration of HPV DNA test as a screening tool. Strategy/Tactics: The milestone of the Papanicolaou test program was analyzed to see the gap and the options of the improvement. The performances of Papanicolaou test services were analyzed through the annual data and report of Papanicolaou test services from all the states. Later, we also map the analysis with the latest incidence of cervical cancer in Malaysia to see the impact of the program. Program/Policy process: The planning process involved several discussions at ministry level, series of workshop to develop the important documents for the implementation, being collaborative partner in organizing HPV workshop and effective discussions with VCS, Australia. Outcomes: Mandate of the way forward of comprehensive strategy for cervical cancer control program being approved. What was learned: Malaysia is optimistic that cervical cancer reduction program remain a high-profile agenda in the country and therefore we are ready for the change to give a better impact of the program.
Salivary Human Epidermal Growth Factor Receptors 2 Levels in Patients With Different Stages of Breast Cancer: A Cross Sectional Study
Authors: Kumar P.D. Madan , Kandavel S.
Published: September 2018

Background: Breast cancer in women is a major health burden across the globe, which accounts for 12% of all new cancer cases and 25% of all cancers in women. Though studies have demonstrated a significant reduction in mortality and morbidity by periodic screening using mammography, its cost and exposure to radiation are prohibitive factors in subjecting the patients to a repetitive mammogram examination. Hence additional adjunct procedures which can overcome these disadvantages and enhance screening are advocated. Human epidermal growth factor receptor-2 (c-erbB-2) is a biomarker that can be detected in saliva of breast cancer patients. An elevated level of this protein indicates the presence of an aggressive tumor with poor prognosis. Aim: The aim of our study was to determine the levels of salivary c-erbB-2 in patients diagnosed with different stages of breast cancer. Methods: 90 patients, histopathologically diagnosed with breast cancer were divided into three groups based on TNM staging (Stage I, II, and III) with 30 patients in each group. 3 ml of unstimulated saliva was collected from these patients and the protein was estimated using ELISA kit. Appropriate statistical tests were used to analyze the demographic details and mean salivary c-erbB-2 levels. Results: The mean salivary c-erbB-2 levels in groups I, II and III were 9.933(±5.105), 59.633(±17.14) and 146.695(±22.418) picograms/mL respectively. There was a significant increase in the levels of the protein with an increase in the TNM staging in patients with breast cancers. Conclusion: This study results throws light on the potential use of salivary c-erB-2 as an adjunct screening and prognostic tool for breast cancer. However further studies are recommended to assess the utility of this biomarker for the diagnosis and posttreatment monitoring of breast cancer.
Mathiwos Wondu-Yeethiopia Cancer Society Role in Implementation of Community-Based Cervical Cancer Control Projects Across Three Regions in Ethiopia
Authors: Abate Z.M. , Woldemariam W.B.
Published: September 2018

Background and context: Cervical cancer is the world's deadliest but most easily preventable forms of cancer for women. It is a major cause of morbidity and mortality among women in sub-Saharan Africa. In Ethiopia estimates showed there are 20.90 million women ages 15 years and older who are at risk for developing cervical cancer. Current estimates indicate that every year 4648 women are diagnosed with cervical cancer and 3235 die of the disease. Cervical cancer cited as the 2nd most frequent cancer among women in Ethiopia, where 13.4% of women cancer is due to cervical cancer only next to breast cancer (31%). Understanding the burden posed by cervical cancer led to the development of a national strategy for prevention and control of this disease. The government is implementing a single visit, see and treat strategy with visual inspection of the cervix with acetic acid (VIA) and cryotherapy treatment. This project plan to raise the awareness of women age 30 to 49 to access these VIA (cryotherapy) providing public health facilities. Aim: To contribute for prevention and control of cervical cancer in three regions in Ethiopia (Oromia, SNNPR and Addis Ababa regions). Strategy/Tactics: - Promote awareness among policy makers, pressure groups and community representatives (women leaders, Iddir leaders1, religious leaders, people living with HIV, youth leaders, school club representatives, health extension workers, health workers etc.). - Referral support for cervical cancer suspected women - Provide support for transportation, diagnostic cost and psycho-social support (accommodation, nutrition and counseling) for care givers and referred women. Program/Policy process: - Engaging the relevant community stakeholders for mobilizing the community to access the VIA/cryotherapy services - Engaging the key government stakeholders in implementation of the project - Working in collaboration with other local and international partners. Outcomes: Between August 2015 to January 2018 a total of 1998 (M=565, F=1433) reached with key cervical cancer awareness messages. Additionally the project sensitized 2874 (M=534, F=2340) workers about the cervical cancer prevention and control strategies. 7689 women get screened and 502 are VIA positive, 156 suspicious cases and VIA positivity rate is 6.5%. 108 women referred for advanced cancer treatment (82 alive and 26 death with cervical cancer). What was learned: Annual project review meeting and joined supervision indicated- - The awareness program for the key pressure community group has an impact and resonance effect on the awareness of the general community to get screened. - Despite the progress made by this project there are a large number of women still do no access screening of cervical cancer. Thus, integration of more effective and affordable interventions such as HPV vaccination is required to drastically eliminate cervical cancer. 1Local Funeral Associations.
Role of Pictorial Warning on Cigarette Packets in Tobacco Cessation: A Questionnaire Survey Among Cigarette Smokers in Chennai, India
Authors: Francis C.J.
Published: September 2018

Background: Tobacco is used in various forms (smoking/smokeless forms) all over the world today. The World Health Organization reports it to be the leading preventable cause of death worldwide, and estimates that it currently causes 5.4 million deaths per year. Rates of smoking have leveled off or declined in developed countries. However, they continue to rise in the developing countries. As in other developing countries, India too suffers a stage of the tobacco epidemic, hosting nearly 17% of the world´s smokers, with the number constantly on the rise. According to the report of the Tobacco Control in India, 800,000-900,000 Indians die annually due to diseases attributable to tobacco. Among these deaths, 50% are due to cancer and 40% are other reported health-related problems such as cardiovascular and lung disorders. Tobacco is used by various groups of people irrespective of their social, economic or educational background, and majority of them use it despite knowing the hazards to their health. Warning labels on cigarette packages are meant to communicate such smoking-associated risks. The study is designed to find out the effectiveness of pictorial warnings present on cigarette packets in India for tobacco cessation among cigarette smokers. Methodology: A questionnaire was distributed to 800 current smokers attending an outpatient department of a college. Statistical analysis was done to find association between socioeconomic status and effectiveness of pictures to quit cigarette smoking. Results: 48% smokers perceive text warning is an efficient method to create awareness. 56% emphasized the importance of pictorial warning and greater area to be covered. 43% felt that warning on cigarette packets helped them to quit smoking. Conclusions: Though pictorial warning is an effective method to improve the awareness among smokers on the ill effects of smoking, the size, area covered and the position of the picture on cigarette packets needs to be reviewed to improve the quit rate.
An Assessment of Awareness on Oral Cancer Among Smokeless Tobacco Users in Rural Skirts of Tamil Nadu, India
Authors: Joseph M.P.
Published: September 2018

Background: Smokeless tobacco (ST) is tobacco consumed orally, not smoked. It has been in use for as long as other forms of tobacco consumption and its use have increased. The deleterious effects of smokeless tobacco use are perhaps not as well-known as those produced by smoking. Smokeless tobacco use has been recognized as a cause of cancer. In developing countries, tobacco is mostly chewed with other ingredients. Despite the claims by some tobacco companies and a few harm reduction proponents that using smokeless tobacco products is less harmful than smoking or that smokeless tobacco should be used as a tool to help smokers quit smoking (but continue using tobacco in the form of smokeless tobacco), the fact remains that using smokeless tobacco still exposes users to many harmful chemicals and still heightens a user's risk for many of the same health problems as smoking. The aim of this study is to assess the awareness of health hazards of tobacco among smokeless tobacco users in Kancheepuram District, Tamil Nadu, India. Methodology: The inhabitants of the villages in Kancheepuram district, who have completed 18 years were included in the study. Ethical clearance from the board, permission from the village panchayat leader and informed consent from the participants to conduct the study was obtained. Inhabitants of the villages aged 18 to 75 years and present on the day data collection and who were willing to participate in the study were included. Random sampling method was used and data were collected from a cross-sectional survey, using a pretested questionnaire, which included demographic data, tobacco habits, its frequency and form. Antitobacco counseling was given on the spot and followed. The data collected was analyzed using SPSS version 15. Results: The study population consisted of total 400 individuals, male 200 and females 200. From the results it is observed that more than 70% were unaware of the harmful effects of tobacco. Majority of the females use smokeless tobacco and smoking tobacco was common among males. Most common cause of tobacco use was pleasure 32.5%, inducing factor were friends 43.7% followed by parents and siblings. Effectiveness of antitobacco counseling is greater among the females compared with males. Conclusion: The dangers from smoking and chewing tobacco are well documented within the literature but the public's lack of knowledge of the risks is a concern. Health professionals are encouraged to disseminate information on the subject as widely as possible and improve existing screening programs to ensure that the public is made aware of these risks, especially those within high-risk groups.
Neuroendocrine Tumor Awareness Program in Taiwan
Authors: Tsai S.
Published: September 2018

Background and context: Neuroendocrine tumor (NET) is difficult to detect. It's often presented with symptoms common to other diseases. To raise awareness and improve the understanding of NET, the International Neuroendocrine Cancer Alliance (INCA) announced 10th November as the World NET Cancer Day. HOPE FOUNDATION for CANCER CARE has joined the advocacy events since 2011. Aim: To raise awareness and to improve the understanding of NET. Strategy/Tactics: To raise the awareness of the 10 symptoms of NET. To provide correct information about NET. To improve the understanding of NET. Program/Policy process: We held a series of campaigns in November 2017, including: theme decorations in 11 hospitals, 3 parades and shows at public places, a new animation with online marketing and outdoor advertising. By combining online and offline events, we have reached as many people as possible to increase the awareness and improve the knowledge of NET. We built the first as well as the only NET Mandarin Web site ( www.net.org.tw ) Outcomes: We cooperated with 11 hospitals in Taiwan to display educational posters and wall stickers. The information of NET cancers not only reached the public but also oncologists. This event had 3 newspaper reports and 16 online news reports. We conducted 3 educational parades and shows with zebra theme in three main cities in Taiwan. The parade in capital city Taipei gained total 86 reports including 71 online news media, 8 television channels and 7 newspapers. We cooperated with a celebrity artist to create a zebra mascot, which represents international symbol for NET. In addition, we created awareness lightbox advertising and animated video with the mascot to attract public attention and raise awareness of NET. This animated video was published on YouTube platform, and had 504,209 impressions and 208,427 views by 31st December 2017. Moreover, it was broadcasted on taxis in Taiwan as well. It was broadcasted 1,163,248 times during the promotion period. We also implemented an online advocacy plan through Facebook. This plan was designed with 4 posts, which contained a comic strip, an online memory game, a profile picture frame and an animated video. This plan totally had 332,625 impressions and reached 154,089 people on the Internet. What was learned: According to our experience with cancer patients, we realize that utilizing mascot characters to deliver educational information is more easily perceived by the public. This year we designed a new mascot of NET which was applied to animated video and outdoor advertising. Also, we conducted 3 educational parades with zebra theme and traditional Taiwanese features, which opened up a new dimension in advocacy for cancer awareness. Overall, these events received good response from the public and oncologists. The NET Mandarin Web site also showed a significant result with an increase of 98% of monthly page views and 69.7% of new visitors views.
The Patient Navigation Project for Socially Vulnerable Cancer Patients Improves Quality of Life and Health Literacy
Authors: Scheuer S.
Published: September 2018

Background: Social inequality in cancer survival and rehabilitation is a major problem. Patient navigation has shown to empower cancer patients to take part in their health care and help them navigate through an increasingly complex health care system. These promising results makes it relevant to explore whether patient navigation can improve the lives of vulnerable cancer patients. Aim: The aim of this study is to examine whether the Danish Cancer Society's nation-wide Patient Navigation Project improves quality of life and health literacy among socially vulnerable cancer patients. Methods: Socially vulnerable cancer patients were included in the project and matched with a navigator (volunteer). The navigators, who had a background in social welfare or health care, supported the patients during a 6-month period. The navigators participated in health care visits, helped the patients to keep track of their disease and treatment, and gave the patients emotional support. The support was based on the patients' needs and the navigators focused on empowering the patients. The patients completed a baseline questionnaire and a 6-month follow-up questionnaire. The questionnaires focused on quality of life (WHO-5 Well-being Index and distress thermometer) and health literacy. Results: Of the 268 participants enrolled in the project, 45 were still enrolled when data were collected and 110 did not complete the 6-month navigation period, due to death or disease worsening. Of the 113 participants who completed the 6-month navigation period, 97 participants filled out the 6-month follow-up questionnaire (86%). The participants were predominantly on retirement benefit (61%), 19% were unemployed and 56% had no or a short education. At baseline, the mean distress level was 8.1, and 64% had a low well-being score and were therefore at risk for depression/long term stress. 6 month after enrolment, the distress level had decreased to 6.7 ( P < 0.001) and 28% had a low well-being score ( P < 0.001). When it comes to health literacy, 60% of the participants stated that they had become better at finding information about their disease 6 month after enrolment, and 74% had become better at asking questions at meetings at the hospital. Conclusion: The socially vulnerable cancer patients enrolled in the Patient Navigation Project experienced increased well-being, a lower distress level and improved health literacy 6 months after enrollment. The findings of the study suggests that patient navigation can improve quality of life and health literacy for socially vulnerable cancer patients.
Mobile Mammography in Lower-Middle–Income Country, Jordan Experience
Authors: Abu Tahoun L. , Khatib Y. , Farfora H. , Ghoul S. , Abdallah A. , Abdarrahman R. , Jarrah R. AL , Mansour R. , Al Tamimi Z. , Ammar K. , Mutlak S.
Published: September 2018

Background: Breast cancer is the most common malignancy among adults in Jordan accounting for 39.4% of all newly diagnosed cancers. Jordan is a lower-middle–income country that lacks national screening program. King Hussein Cancer Foundation/Center (KHCF/KHCC) and Jordan Breast Cancer Program had put significant efforts over past years to increase awareness about breast cancer and improve mammography services. They have introduced two mobile mammography units aiming at reaching women in their local communities, in underserved and underprivileged regions. Aim: Describe the experience of making mammography accessible and free of charge to women in rural and remote areas with limited access to mammography services. Methods: Local health educators were trained to recruit women aged 40 years and above to get free screening mammogram in mobile mammography unit. Data collected from five rural areas in Jordan from 2012 until 2017. Total number is 13570 women. Recall was performed at the fixed mammography unit at KHCC and was free of charge until the diagnosis of cancer affirmed or deferred. Results: The highest percentage of women 55.2% (N: 7733) aged 41-50 years. Women aged less than 40 years were recruited due to their breast-related symptoms. It was ethically difficult to refrain imaging symptomatic women in van in remote areas. However, in areas closer to KHCC symptomatic women with no medical insurance were directly referred to KHCC with voucher for free mammogram and workup. Total number of women referred for screening was 13058 (96.2%) and those referred as diagnostic was 512 (3.8%); their mean age was 48.8 and 45 years respectively. Overall recall rate was 29.3% (N: 3822) among screening cases. Cancer detection rate was 0.85% (N: 112) among screened women and 6.8% (N: 35) among diagnostic cases. Number of women who failed to adhere to follow-up procedures was N=1191 (8.8%). It was noticed that family history of cancer correlated with better adherence to complete follow-up procedures. Conclusion: Mobile mammography unit enabled access to screening mammography in rural areas and also encouraged symptomatic women to seek medical advice early. Ensuring financial coverage may have been an additional motivational factor. Follow-up studies may be conducted to compare tumor size differences between screening and diagnostic cases, prognosis and quality of life.
Utilizing a Global Cancer Center Network for Tobacco Control: Baseline Survey of MD Anderson´s Global Academic Program´s Sister Institution
Authors: Foxhall L. , Tami-Maury I. , Galindez M. , Bello R. , Francis K. , Ramos M. , Hurst A. , Cofer J.
Published: September 2018

Background: Globally, tobacco can be attributed to more than 7 million deaths each year. To address this potentially avoidable mortality, The University of Texas MD Anderson Cancer Center has engaged its Global Academic Program´s (GAP) sister institutions (SI) by conducting an inaugural tobacco control assessment survey. A similar survey was done with our University of Texas academic and health science center affiliates that led to improved adoption of tobacco control policies as well as prevention and cessation services on all campuses. The baseline data collected will serve as a mechanism to develop a tobacco prevention and control strategy within a global cancer center network. Aim: To assess SI laws and policies regarding tobacco use, existing screening and cessation services. Strategy/Tactics: Qualtrics was used to administer a 27-item survey to our GAP SI from April-October 2017. Survey questions focused on key areas of tobacco prevention and control: policy, tobacco use screening, and cessation services. A survey link was emailed to 34 institutions in 23 countries. Program/Policy process: Survey GAP SI to determine current tobacco prevention and control measures being implemented. Convene GAP SI in May 2018 to share tobacco control best practices across the network and identify resources and supports to strengthen tobacco control efforts at each institution. Build collaborations aimed at progressive actions in tobacco control policies, educational programs and cessation services culturally appropriate to the needs and resources of the GAP network. Outcomes: Of the 34 GAP SI, 26 responded to the survey (76% response rate). Key findings among the 26 responding institutions: policy - 96% are located in cities with laws regulating the sale and/or use of tobacco products by minors and 77% of the cities have laws regulating the use of tobacco in the workplace; 42% of the campuses have designated smoking areas; tobacco use screening - 65% screen for and document patients´ tobacco status, however only 27% screen “all the time”; cessation services - 19% offer telephone counseling as a cessation service; 38% offer cessation services to the community; 46% offer cessation services to employees. What was learned: The baseline assessment identified areas of institutional needs: cessation services and campus policies. Further discussion with the SI will help engage them in further efforts to address gaps in tobacco control. Collectively, we aim to develop action steps to collaborate and enhance existing services by creating a global platform in which tobacco control best practices and resources can be shared.
Giant Inflatable Colon Enhances Community Knowledge and Intention for Colorectal Cancer Screening
Authors: Nasr R. ,   on behalf of CPCP, NKBCI and AMALOUNA, AUB
Published: September 2018

Background and context: Cancer represents a global health threat and is considered a leading cause of death worldwide. Statistics in Lebanon show that cancer incidence rate has dramatically increased over the last decades, which calls for the development and implementation of effective strategies in combatting cancer through awareness, prevention, and early detection. Colorectal cancer (CRC) continues to be the second most common in women and fourth most common among men in Lebanon. Aim: Since March is the colorectal cancer awareness month, the Cancer Prevention and Control Program - Naef K. Basile Cancer Institute - American University of Beirut (AUB) Medical Center in collaboration with AMALOUNA, an AUB affiliated educational organization that aims to raise awareness about cancer, cancer prevention and cancer research, launched a campaign tailored for this type of cancer. The aim of this campaign was to raise awareness about colorectal cancer, break the cycle of fear, and increase public knowledge about CRC using interactive educational activities. Strategy/Tactics: A walk-through giant inflatable colon was built specifically for the event. This educational tool offers participants a visual representation of the normal histology of the colon, the different stages of colon cancer development ranging from a simple polyp to a metastatic cancer as well as preventive tips. Vouchers for colorectal cancer screening tests were distributed to eligible participants after the visit of the colon. Program/Policy process: Since 2017, we have conducted six outreach activities all over Lebanon in which the inflatable colon was displayed for educating the community about CRC. To evaluate whether this giant colon improves the community knowledge about CRC, pre and post-surveys related to the age of screening, risk factors, symptoms, and CRC prevention were collected anonymously before and after touring the inflatable colon. Outcomes: Data collected from more than 700 participants demonstrated that the inflatable colon increased participants' knowledge concerning CRC. Most importantly, it increased their intention to get screened by 27.5% and their comfort with talking to others about CRC screening by 19%. What was learned: These results indicate that the interactive colon is an effective educational tool that can make a positive impact by increasing public awareness about CRC and their intention to get screened. Such educational efforts conducted in the community promote cancer screening and encourage people to adopt healthier lifestyles.
Lighting the Way for Palestinian Cancer Patients, Survivors, and Families: Creating and Implementing Supportive Care in a Challenging Environment
Authors: El Jabari C.
Published: September 2018

Background and context: A cancer diagnosis is a very shocking event. Not only do patients struggle with learning they have cancer but often they have little psycho-social support, information services or understanding professionals, friends, families or colleagues. That is the situation in Palestine. To compound all these factors, most cancer patients, at least 60%, present with late stage disease which often results in poor outcomes only confirming to those involved with the patient that they have been handed a death sentence. The stigma associated with cancer impacts many socially and personally. Fast forward to a Palestinian NGO, PFS Jerusalem, working in cancer support, education, early detection and psychosocial support. In 2000 they started the first support group for women living with cancer, based in Jerusalem. The group has now grown to include women from all over the occupied territories, including Gaza. In 2011, an additional branch was established in Hebron, the largest Palestinian city. Aim: To improve quality of life; provide psychosocial support, guidance, lymphoedema massage and education for women with little if any access to support regardless of the source; to provide “affordable” and “accessible” services for women and their families often restricted economically, politically or socially. Strategy/Tactics: Identify patients/survivors ready to be “the face” of cancer, ready to help others, ready to be the voice so families and the larger community will learn and understand better, this non communicable disease. Facilitate gatherings, services; fund raise to realize activities and services; promote the concept of organized support and the advantages for patients and families; respect their diversity; flexibility is key. Program/Policy process: Process is to be consistent in providing education and support; reach out to health professionals to increase knowledge and support for patients and families- coordinate and collaborate. Entice key persons to help promote our efforts (i.e., big business leaders, senior physicians/surgeons, administrators); use social media for promotion. Outcomes: Increased numbers of women from all walks of life come together on a regular basis; services that appeal to the women are most likely to be joined/followed and continued; community increasingly engaged. Cancer survivors are advocates for early detection; spokespersons for our work; trained cancer survivors are “Reach to Recovery” patient supporters; cancer patients display better coping mechanisms. What was learned: Patience, persistence, hard work and commitment are needed to bring about change.
Pediatric Cancer Registry in Turkey (Turkish Pediatric Oncology Group & Turkish Pediatric Hematology Association)
Authors: Kutluk M.T. , Yeşilipek M.A.
Published: September 2018

Background: Each year more than 200,000 new cancer cases are expected in children & adolescents aged 0-14 years at global level. Although the long term survival rates have been improved to 85% in high income countries, it is still lower than this LMICs with a wide range around the world. Pediatric registries are critical for planning for pediatric cancer care. This study summarizes the update of pediatric cancer registry in Turkey. Aim: To analyze the pediatric cancer distribution through Turkish Pediatric Cancer Registry for the years of 2009-2017. Method: Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Association established a Web based cancer registry in Turkey in 2002. The registry information for 2002-2008 was presented earlier. This study, now, is presents the distribution of pediatric cancers for the years of 2009-2017. International Childhood Classification System was used in classification. Basic demographic findings, ICD-O-3 morphology & topography codes were recorded for each cases. This is an update of the Turkish Pediatric Cancer Registry. Results: During the 9 years from 2009 to 2017, 14,769 pediatric cancer cases were recorded. For all cases, median age was 6.7 years (0-17 M/F 8318/6443, 3 hermaphrodite 5 unknown). Age distribution was 0-4 yrs, 40.8%; 5-9 yrs, 24.5%; 10-14 yrs, 23.3%; 15-19 yrs, 11.4%. The distribution of tumor types were [number of cases, percentage of total, median age years, M/F]: leukemia (4114, 27.9%, 5.5, 2366/1748); lymphoma and other RES tumors (2823, 19.1%, 9.6, 1904/914, 1 hermaphrodite 4 unknown); CNS [brain & spinal] (1950, 13.2%, 7.1, 1072/828); sympathetic system (1166, 7.9%, 2.4, 609/557); retinoblastoma (351, 2.4%, 1.4, 197/154); renal (736, 5.0%, 3.3, 345/391); liver (242, 1.6%, 1.8, 132/110); malignant bone (965, 6.5%, 12.6, 527/438); soft tissue sarcomas (991, 6.7%, 7.4, 580/411); germ cell (911, 6.2%, 8.2, 331/577, 2 hermaphrodite, 1 unknown); carcinoma and other malignant epithelial (436, 3.0%, 13.6, 212/224); other/nonspecific malignant (84, 0.6%, 7.1, 43/41) tumors. Five year survival rate was found as 67.8%. Conclusion: Registry provides the essential information for planning the pediatric cancer care. This registry became a critical source for health care professionals in Turkey since beginning. Survival rates for children increased to 67.8% based on this study. This is compatible with the survival rates from other upper middle income countries. This data also allows the comparison of the national data with the national and international studies. Investment on the pediatric cancer registry is one of the first steps of investments on pediatric cancer care.
Equality in Breast Cancer Treatment? A Systematic Review of the Utilisation of Primary Treatment Within Priority Population Groups in Australia
Authors: Thai J. , Howard N. , Buckley E.
Published: September 2018

Background: Australia has a high standard of health and healthcare compared with many other OECD countries, with life expectancies among the highest in the world. However, this attainment is not reflected equally across all population subgroups within Australia. Translation evidence from clinical trials into practice varies, leading to attenuated effects across subgroups. Variable effects also occur due to differences in access to interventions and cancer treatment services. Priority subgroups can experience poorer access to healthcare and overall health outcomes due, in part, to the influence of social, environmental and political factors Aim: This study aimed to determine the extent to which inequalities exist across subgroups of the Australian population with breast cancer, as relating to cancer treatment (surgery, radiotherapy and chemotherapy). Methods: A systematic literature review was undertaken in December 2017 to identify and quantify the inequalities in treatment utilization across priority subgroups in Australia. MEDLINE, Embase, Scopus, Web of Science and Cumulative Index to Nursing and Allied Health Literature were used to identify the literature. Identification of relevant articles resulted from screening the full text of all articles identified, with each article assessed against predefined inclusion criteria. Quality assessment was used to inform the qualitative synthesis to explore the relationship between priority subgroups and the utilization of primary breast cancer treatment. The protocol for this systematic review was registered with the PROSPERO database on the December 19, 2016. Results: A total of 2030 articles were screened for eligibility, with 29 articles included in the final review. Results highlight an underutilization of breast cancer treatment (surgery, radiotherapy and chemotherapy) across priority subgroups compared with the nonpriority populations, including aboriginal women (4%-15% less likely to receive breast conserving surgery), elderly (9% more likely to have no surgery), women of greater socioeconomic disadvantage (13%-28% less likely to receive breast conserving surgery), and women living remotely (20%-38% less likely to receive breast conserving surgery). Similar differentials in utilization were seen with adjuvant therapies. Conclusion: Evaluation of health services and treatment utilization is an important aspect of cancer control programs. In quantifying the underutilization of health services for breast cancer treatments, it is clear that variations exist in the treatment of breast cancer among priority populations in Australia. Greater understanding of the barriers to treatment among these population groups are needed to minimize inequalities that exist in cancer treatment and cancer outcomes in Australia.
Utilization of Quality-Adjusted Time Without Symptoms or Toxicity (Q-TWiST) Method In Oncology: A Systematic Review of Clinical Trials
Authors: Mai T.T.X. , Jung C. Yoon , Hyunsoon C.
Published: September 2018

Background: Common endpoints of many cancer clinical trials are overall survival, progression-free survival or relapse. Despite their given importance, these measures do not account for quality of life (QOL). The Q-TWiST (Quality adjusted Time Without Symptoms and Toxicity) method has been proposed by Gelber in the 1990s to enable a statistical comparison between two treatment groups by incorporating both benefit (survival) and risk (toxicity, QOL). Q-TWiST partitions lifespan of patients from beginning of treatment until death into three time segments corresponding to three distinct health states: toxicity (TOX), TWiST (Time Without Symptoms of Treatment or Diseases) and relapse (REP). Aim: The purpose of this systematic review was to evaluate the utilizations of Q-TWiST method in cancer clinical trials and how these results were translated to clinical practice in oncology field. Methods: We searched PubMed, Embase, Cochrane library and the bibliographies of relevant articles to locate additional publications in Jan 2018. Two evaluators independently reviewed and selected eligible studies based on keyword “Q-TWiST” and predetermined selection criteria. Clinical trials in oncology field quantifying Q-TWiST in the analysis were included. We focused how health states were defined and utility coefficients were determined. Other relevant contents were collected and summarized. Results: Out of 79 studies, 36 oncology clinical trials utilizing Q-TWiST method were identified. We included 20 studies published within last decade (2008-2018) in final review. Trials ranged from 182 to 1110 subjects. Breast cancer was most common cancer type. All studies were post hoc analysis which used data from previous publications and applied Q-TWiST in analysis. Methods in determining QOL, also called utility coefficients, varied among included trials. Among 20 studies, six directly measured QOL in their trials and used it for Q-TWiST method, two obtained QOL data from other studies with similar study participants. Most commonly used questionnaires were EORTC QLQ-C30 and EuroQOL EQ-5D. Utility coefficients were arbitrarily set in 12 studies. Most common values were 0.5, 1 and 0.5 for TOX, TWiST and REP respectively. Definition of these health states, especially toxicity, were consistent among included studies. Few studies discussed both statistical and clinical significance of their findings. Conclusion: Q-TWiST method has been increasingly used as a post hoc analysis in many oncology clinical trials within last decade. However, some current limitations should be compromised to make Q-TWiST become a clinically useful method for physicians and patients. We suggest that definition of health states must be standardized, methods to determine utility coefficients must be validated and universal in the future analysis.
A Whole-Organisation Approach to Increasing Bowel Screening Participation Rates
Authors: Broun K. , Harper T.
Published: September 2018

Background and context: Australia has one of the highest rates of bowel cancer in the world, yet if detected early more than 90% of cases can be successfully treated. The Australian government's National Bowel Cancer Screening Program (NBCSP) send a free at-home iFOBT to all eligible people aged 50-74. Current uptake of the program is low (∼40%). Increasing bowel screening is a key focus of Cancer Council Victoria's (CCV) strategic plan (2017-2021). Aim: CCV aims to increase NBCSP participation rates in the state of Victoria, Australia to 50% by 2021. Strategy/Tactics: In 2017, CCV implemented its first ever television-led bowel screening campaign. A whole-organization approach was adopted to develop, implement and evaluate the campaign. Program/Policy process: A whole-organization approach included working with CCVs behavioral researchers to understand barriers and motivating factors to screen, collaboration with the epidemiology center to identify evidence to target campaign delivery, stakeholder liaison with clinicians engaged with the organization, engagement with the organization's support services to respond to calls as a result of the campaign, working with the fundraising team to develop strategies to engage supporters, and leveraging our flagship Daffodil Day initiative with a focus on bowel cancer. Outcomes: Adopting a whole-organization approach enabled all facets of the organization to be involved in a common goal. This resulted in shared ownership of campaign deliverables, greater engagement of staff across the organization in bowel screening and the identification of innovative strategies that wouldn't have been possible had this approach not been adopted. Importantly, CCV’s campaign led to greater numbers of eligible people participating in bowel screening. What was learned: The identification of bowel screening as a CCV priority was critical for enabling cross-organizational collaboration. Taking a whole-organization approach resulted in the identification of existing programs and services to leverage the campaign, strengthening its reach and overall impact.
Skin Cancer: 13-Year Experience at the Department of Dermatology, Hospital Kuala Lumpur, Malaysia
Authors: Affandi A. Mohd
Published: September 2018

Background: Unlike other types of cancers, skin cancer has received little attention in Malaysia, and there's little awareness of it among the public. According to the third report of the National Cancer Registry, Malaysia (2003-2005), skin cancer ranked the tenth most common cancer in Malaysia. Aim: The objective of this study was to determine the demography and the types of skin cancers seen in the Department of Dermatology, Hospital Kuala Lumpur. Methods: This was a 13-year retrospective review of all patients with skin cancers seen at the Department of Dermatology, Kuala Lumpur Hospital between 2005-2017. All patients confirmed to have skin cancer histologically were included in this study. Results: The total number of patients diagnosed to have skin cancer between the 13-year period was 426. The mean age of the patients was 59.5 ± 17.8. 56.1% of the patients were male and 43.9% were female. Majority of the patients were Chinese (46.2%), followed by Malay (34.3%), Indian (11.5%) and other ethnic groups (8.0%). The commonest type of skin cancer was basal cell carcinoma (31.9%), followed by cutaneous lymphoma (25.4%) and squamous cell carcinoma (24.2%). Malignant melanoma was not common and accounted for 5.6% of the patients. Other types of skin cancers such as cutaneous metastasis were seen in 4.5% of patients, extramammary Paget's disease in 4.2%, Kaposi sarcoma in 1.9% and other types of tumors accounted for 2.3% of the patients. Majority of the patients with primary cutaneous lymphomas were cutaneous T-cell lymphoma (CTCL), which accounted for 97.2% of all cases of primary cutaneous lymphomas. Conclusion: Basal cell carcinoma was the commonest skin cancer seen at the Department of Dermatology between 2005-2017. This is consistent with the reports from other parts of the world, which reported basal cell carcinoma as the commonest type of skin cancer.