scholarly journals Examining the Landscape of Prognostic Factors and Clinical Outcomes for Cancer Control

2021 ◽  
Vol 28 (6) ◽  
pp. 5155-5166
Author(s):  
Meredith Elana Giuliani ◽  
Eleni Giannopoulos ◽  
Mary Krystyna Gospodarowicz ◽  
Michaela Broadhurst ◽  
Brian O’Sullivan ◽  
...  
Keyword(s):  
Prognostic Factors ◽  
Data Collection ◽  
Clinical Outcomes ◽  
Data Exchange ◽  
Cancer Control ◽  
Cancer Registries ◽  
Cancer Surveillance ◽  
Structured Interviews ◽  
Data Governance ◽  
Control Programmes

Prognostic factors have important utility in various aspects of cancer surveillance, including research, patient care, and cancer control programmes. Nevertheless, there is heterogeneity in the collection of prognostic factors and outcomes data globally. This study aimed to investigate perspectives on the utility and application of prognostic factors and clinical outcomes in cancer control programmes. A qualitative phenomenology approach using expert interviews was taken to derive a rich description of the current state and future outlook of cancer prognostic factors and clinical outcomes. Individuals with expertise in this work and from various regions and institutions were invited to take part in one-on-one semi-structured interviews. Four areas related to infrastructure and funding challenges were identified by participants, including (1) data collection and access; (2) variability in data reporting, coding, and definitions; (3) limited coordination among databases; and (4) conceptualization and prioritization of meaningful prognostic factors and outcomes. Two areas were identified regarding important future priorities for cancer control: (1) global investment and intention in cancer surveillance and (2) data governance and exchange globally. Participants emphasized the need for better global collection of prognostic factors and clinical outcomes data and support for standardized data collection and data exchange practices by cancer registries.

scholarly journals Global Consultation on Cancer Staging: To Promote Consistent Understanding and Use of Cancer Stage Terminology

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 151s-151s
Author(s):  
B. O'Sullivan ◽  
F. Moraes ◽  
S.H. Huang ◽  
M. Malcolm ◽  
J. Brierley ◽  
...  
Keyword(s):  
Cancer Control ◽  
Cancer Staging ◽  
Cancer Registries ◽  
The United States ◽  
Cancer Surveillance ◽  
International Agency ◽  
Cancer Stage ◽  
Disease Extent ◽  
Increased Risk ◽  
Staging Systems

Background and context: Although the TNM stage schema has been the traditional means to classify anatomic extent of disease, in recent years confusion and uncertainty have emerged which underpinned by lack of familiarity concerning underlying rules of staging and their application. In turn such lack of clarity has led increased risk of miscommunication regarding patient care, research, cancer surveillance, epidemiology and cancer control. The UICC TNM Committee has confirmed a lack of uniformity in the application of cancer stage and its rules. In addition to stage, numerous other factors influence the outcome of patients as relate to tumor characteristics, patient descriptors, and the environment where any treatment is administered. A particularly a frequent problem is mixing disease extent and biology which has promoted additional misunderstanding about the importance and relevance of different individual prognostic elements and to what degree biology vs disease burden contribute to outcome. Aim: To ensure uniformity of staging systems, rules and classifications, the TNM Committee developed a global consensus on cancer staging. Strategy/Tactics: A selected literature review of twelve high impact oncology journals was performed and results will be summarized. There was inconsistent understanding and use of cancer stage classification terminology evident in up to 20% of the literature. A survey was developed and found that only 12.5% of those surveyed thought that the application of the TNM staging terminology was consistent and uniform in the literature. Respondents believed that complete T, N and M data should be recorded in cancer registries, 71% considered that other predictive and prognostic factors should also be collected by central cancer registries but that anatomic disease extent should be collected as a separate variable (85%). The Global Consultation on Cancer Staging was held under the auspices of the Union for International Cancer Control (UICC) and Lancet Oncology with support from the United States (US) National Cancer Institute (NCI) and the US Centers for Disease Control and Prevention (CDC). Experts from these organizations and FIGO (Fédération Internationale de Gynécologie et d´Obstétrique), IACR (International Association of Cancer Registries), IARC (International Agency for Research in Cancer), and the ICCR (International Collaboration on Cancer Reporting) attended. Program/Policy process: The purpose of the staging classification was reaffirmed. Important issues about staging processes were annunciated, and inconsistencies in terminology and use were acknowledged. Definitions of frequently misused staging terms were clarified. What was learned: It was determined that methodologies need to be explored to identify and include necessary data elements relevant to personalized treatment. Selection of factors should particularly include attention to their inclusion in cancer registries where appropriate.

scholarly journals Using informatics to improve cancer surveillance

2020 ◽  
Vol 27 (9) ◽  
pp. 1488-1495
Author(s):  
Wendy Blumenthal ◽  
Temitope O Alimi ◽  
Sandra F Jones ◽  
David E Jones ◽  
Joseph D Rogers ◽  
...  
Keyword(s):  
Public Health ◽  
Language Processing ◽  
Data Exchange ◽  
Cancer Registries ◽  
Target Audience ◽  
Cancer Surveillance ◽  
Clinical Text ◽  
Computer Scientists ◽  
Natural Language Processing Tool ◽  
Control And Prevention

Abstract Objectives This review summarizes past and current informatics activities at the Centers for Disease Control and Prevention National Program of Cancer Registries to inform readers about efforts to improve, standardize, and automate reporting to public health cancer registries. Target audience The target audience includes cancer registry experts, informaticians, public health professionals, database specialists, computer scientists, programmers, and system developers who are interested in methods to improve public health surveillance through informatics approaches. Scope This review provides background on central cancer registries and describes the efforts to standardize and automate reporting to these registries. Specific topics include standardized data exchange activities for physician and pathology reporting, software tools for cancer reporting, development of a natural language processing tool for processing unstructured clinical text, and future directions of cancer surveillance informatics.

scholarly journals Improving the usability and utilization of cancer registry data : the need to identify a core data set

2012 ◽  
Author(s):  
◽  
Iris Zachary
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Cancer Registry ◽  
Data Use ◽  
Cancer Registries ◽  
Cancer Surveillance ◽  
Registry Data ◽  
Data Standards ◽  
Cancer Data ◽  
Cancer Registry Data

Cancer registries in the US and Canada have a long history of data standards and data collection that have developed from a minimal dataset to the standard dataset that is used now. Central Cancer Registries (CCRs) are good resources for cancer data, but are often underutilized. CCRs are recognized for high quality data standards by the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) or the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program and receive certification from the North American Association of Central Registries (NAACCR). Each year, there are many changes to the data that are collected in the cancer registry field. Standards, requirements, and medical knowledge change frequently. The changes in the data collection process cause interference and decrease in quality of data fields, but also delays in the timely collection of cancer registry data. The objective of this study is to identify what essentially needs to be collected and what can be collected optionally in a cancer registry. The goal is a robust dataset that can be used for other disease registries, cancer data surveillance, public health, and research. CCRs and Cancer Centers (CR) were surveyed to identify and describe the data items that are collected and needed to achieve a dataset that can serve cancer surveillance and research. The surveys were analyzed to identify overlaps of common and special interests, as well as barriers. The results showed that cancer registries have data available, but need to look at the timely release of a core dataset for use in cancer surveillance and research. The surveys also evaluated the barriers to data use from cancer registries and barriers for data use of collected datasets to identify the initial data request process. Data in the cancer registry are in a format that can easily be adopted by public health, surveillance, and research. The requesting process needs to be accessible, understandable, and streamlined to enable successful use of the data.

scholarly journals Cancer Registry and Its Different Aspects

2012 ◽  
Vol 1 (2) ◽  
pp. 76-80
Author(s):  
AMM Shariful Alam
Keyword(s):  
Information System ◽  
Cancer Registry ◽  
Health Information System ◽  
Cancer Control ◽  
Cancer Registries ◽  
Population Based ◽  
Cancer Registration ◽  
Registry System ◽  
Control Programmes ◽  
Health Planner

At both the national and community level, cancer registration schemes are central to research into the nature and causation of cancer, to the planning of health service resources and cancer control programmes, and to the assessment of their efficacy. Cancer registration is thus a part of the modern health information system. There are two major types of cancer registries -hospital-based registries and population-based registries. It is of paramount importance that the issue of development of cancer registry in developing countries should be taken into account. Although, the cancer registry system in Bangladesh is in infantile stage, it should be the aim of the health planner of our country to develop population-based cancer registry as early as possible. The extra difficulties and expenses involved are certainly outweighed by the enhanced validity and usefulness of the data generated. DOI: http://dx.doi.org/10.3329/jemc.v1i2.11467 J Enam Med Col 2011; 1(2): 76-80

Model Kaderisasi Anggota Partai Politik Islam dalam Membentuk Pemimpin Islami

2017 ◽  
Vol 2 (2) ◽  
pp. 103-114
Author(s):  
Muhammad Saiful Haq AlFaruqy ◽  
Ahmad Sarbini ◽  
Asep Iwan Setiawan
Keyword(s):  
Data Collection ◽  
Learning Process ◽  
Structured Interviews ◽  
The West ◽  
West Java ◽  
Qualitative Descriptive

Penelitian ini dilakukan untuk mengentahui tugas pokok Bidang Kaderisasi DPW PKS Jawa Barat, untuk mengetahui proses tahapan dan sistem model kaderisasi PKS yang marhalah (berjenjang), untuk mengetahui dan mendapatkan data dalam memebentuk kader pemimpin Islami Bidang Kaderisasi DPW PKS Jawa Barat. Metode yang digunakan dalam penelitian ini ialah deskrptif kualitatif dengan tekinik pengeumpulan data berupa wawancara terstrurktur, observasi, dan studi dokumentasi.. Hasil dari penelitian ini menunjukan bahwa model kaderisi dalam menciptakan pemimpin Islami melalui tahapan-tahapan pembinaan kader yang marhalah (berjenjang). Yaitu, Pertama, ta’lim proses pembelajaran yang mana bertujuan para kader diberikan kurikulum kaderisiasi partai. Kedua, Tandzhim yang mana setelah pembelajaran diharapkan para kader dapat mengasah dan mengimplementasikan hasil kurikulum kaderisasi. Ketiga, taqwin para kader harus dapat menginternalisasi ajaran Islam dalam partai maupun kehidupan berbangsa dan bernegara. This research was conducted to identify the main tasks of the West Java PKS DPW Cadre Field Division, to find out the stages and stages of the PKS cadre model model that is marhalah (tiered), to find out and obtain data in forming the Islamic leaders cadre of the West Java PKW DPW Cadre. The method used in this study is a qualitative descriptive with data collection techniques in the form of structured interviews, observations, and documentation studies. The results of this study indicate that the cadre model in creating Islamic leaders through the stages of training cadres who are marhalah (tiered). That is, First, ta'lim the learning process in which the cadres aim to be given a party cadre curriculum. Second, Tandzhim which after learning is expected that the cadres can hone and implement the results of the regeneration curriculum. Third, taqwin of cadres must be able to internalize the teachings of Islam in the party and the life of the nation and state.

Trends in the incidence and mortality of oral cancer in Nevada (Preprint)

2020 ◽  
Author(s):  
Kevin Foote ◽  
Karl Kingsley
Keyword(s):  
Public Health ◽  
Oral Cancer ◽  
Cancer Incidence ◽  
Cancer Control ◽  
Cancer Registries ◽  
Public Health Research ◽  
Chi Square ◽  
Incidence And Mortality ◽  
The Us ◽  
Chi Square Analysis

BACKGROUND Reviews of national and state-specific cancer registries have revealed differences in rates of oral cancer incidence and mortality that have implications for public health research and policy. Many significant associations between head and neck (oral) cancers and major risk factors, such as cigarette usage, may be influenced by public health policy such as smoking restrictions and bans – including the Nevada Clean Indoor Act of 2006 (and subsequent modification in 2011). OBJECTIVE Although evaluation of general and regional advances in public policy have been previously evaluated, no recent studies have focused specifically on the changes to the epidemiology of oral cancer incidence and mortality in Nevada. METHODS Cancer incidence and mortality rate data were obtained from the National Cancer Institute (NCI) Division of Cancer Control and Population Sciences (DCCPS) Surveillance, Epidemiology and End Results (SEER) program. Most recently available rate changes in cancer incidence and mortality for Nevada included the years 2012 – 2016 and are age-adjusted to the year 2000 standard US population. Comparisons of any differences between Nevada and the overall US population were evaluated using Chi square analysis. RESULTS This analysis revealed that the overall rates of incidence and mortality from oral cancer in Nevada differs from that observed in the overall US population. For example, although the incidence of oral cancer among Caucasians is increasing in Nevada and the US overall, it is increasing at nearly twice that rate in Nevada, P=0.0002. In addition, although oral cancer incidence among Minorities in the US is declining, it is increasing in Nevada , P=0.0001. Analysis of reported mortality causes revealed that mortality from oral cancer increased in the US overall but declined in Nevada during the same period (2012-2016). More specifically, mortality among both Males and Females in the US is increasing, but is declining in Nevada, P=0.0027. CONCLUSIONS Analysis of the epidemiologic data from Nevada compared with the overall US revealed significant differences in rates of oral cancer incidence and mortality. More specifically, oral cancer incidence increased in Nevada between 2012-2016 among all groups analyzed (Males, Females, White, Minority), while decreases were observed nationally among Females and Minorities. Although mortality in Nevada decreased over this same time period (in contrast to the national trends), the lag time between diagnosis (incidence) and mortality suggests that these trends will change in the near future. CLINICALTRIAL Not applicable

scholarly journals Telephone follow-up of oncology patients: the contribution of the nurse specialist for a Service-Dominant Logic in hospital

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Corinne Rochette ◽  
Anne Sophie Michallet ◽  
Stéphanie Malartre-Sapienza ◽  
Sophie Rodier
Keyword(s):  
Patient Activation ◽  
Central Element ◽  
Cancer Control ◽  
Control Unit ◽  
Active Phase ◽  
Nurse Specialist ◽  
Structured Interviews ◽  
Service Dominant Logic ◽  
Dominant Logic

Abstract Background The French healthcare system is characterised by a shift towards outpatient care and the desire to develop telemedicine affirmed in the collective commitment “Ma santé 2022” presented by President Macron in 2018. In France, remote patient follow up has recently been developed in the active phase of cancer treatment inspired by the patient navigation approach used in other countries. According to Service-Dominant Logic (S-D L), patients become more active. Their role in co-production of services is strengthened and their behaviours changed. Telephone follow-ups can contribute to modifying the relationship between the patient and the nurse navigators in charge of it, moving logically from a passive attitude from the patient to a more active one. Methods This study was carried out at Léon Bérard, a cancer control unit, in France. It concerned patients treated in an oncohaematology department, who benefited from telephone follow-ups carried out by nurse specialists during the active phase of their treatment. The multidisciplinary research team including social science researchers, physicians and carers developed a research protocol to study this pilot case. Essentially based on a qualitative approach, it was validated by the centre’s management to study this follow-up on patients’ behaviours. The 1st phase of the research, based on 24 semi-structured interviews with patients undergoing treatment undertaken from November 2018 to September 2019, is presented. Results The Telephone follow-up was a positive experience for all patients. The action of the nurse specialist helped to develop certain dimensions of in-role and extra-role behaviour that created value. The patients’ discourse has reported a positive follow-up in its clinical dimensions, its psychological dimensions and an enhanced quality of life. We detected a patient activation through their roles but it remained limited. The telephone follow-up also created a patient dependency. Conclusions The telephone follow-up is a relevant tool for patients undergoing treatment and it deserves to be more widely deployed. It brings comfort and creates a relationship based on trust but at the same time it limits the emancipation of the patient, which is a central element of the S-D logic and its empowerment.

scholarly journals Loneliness Among the Elderly in Rural Contexts: A Mixed-Method Study Protocol

2021 ◽  
Vol 20 ◽  
pp. 160940692199686
Author(s):  
Borja Rivero Jiménez ◽  
David Conde-Caballero ◽  
Lorenzo Mariano Juárez
Keyword(s):  
Data Collection ◽  
Mixed Method ◽  
Rural Areas ◽  
Population Group ◽  
The Elderly ◽  
Interaction Patterns ◽  
Structured Interviews ◽  
Strict Adherence ◽  
Data Collection And Analysis ◽  
Technological Tools

Loneliness among the elderly has become a pressing issue in Western societies. In the Spanish context, the problem of the so-called “empty” Spain disproportionately affects this population group—elderly individuals living in rural areas with low population density, and therefore at higher risk of social exclusion and isolation. We introduce here a mixed-method, quantitative-qualitative research protocol, triangulated with technological tools, designed to improve both data acquisition and subsequent data analysis and interpretation. This study will take place in a rural locality in the Extremadura region (Spain), chosen according to a particular socio-demographic profile. The De Jong Gierveld Loneliness Scale will be used on a cohort of 80 people over 65 years old. Within this cohort, a smaller sample of 20–30 individuals will be selected for semi-structured interviews about their beliefs and experiences of loneliness. Finally, data gathered from technological tools (smartbands, Bluetooth sensors) will allow us to monitor social interactions and to map daily loneliness/interaction patterns. Data will be triangulated by analyzing and comparing the empirical material gathered through these different methods and tools. Strict adherence to ethical standards for data protection and handling will be essential through data collection and analysis. As well as providing insights into the phenomenon of loneliness in old age, the use of different methods and tools for data collection will provide the basis for an epistemological reflection on the scope and limits of each one of these methods.

scholarly journals Changing relationships: how does patient involvement transform professional identity? An ethnographic study

BMJ Open ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. e045520
Author(s):  
Marie-Pierre Codsi ◽  
Philippe Karazivan ◽  
Ghislaine Rouly ◽  
Marie Leclaire ◽  
Antoine Boivin
Keyword(s):  
Quality Improvement ◽  
Data Collection ◽  
Health Professionals ◽  
Clinical Care ◽  
Ethnographic Study ◽  
Structured Interviews ◽  
Administrative Team ◽  
Nurse Clinician ◽  
New Perspective ◽  
Relational Framework

ObjectivesTo understand identity tensions experienced by health professionals when patient partners join a quality improvement committee.DesignQualitative ethnographic study based on participatory observation.SettingAn interdisciplinary quality improvement committee of a Canadian urban academic family medicine clinic with little previous experience in patient partnership.ParticipantsTwo patient partners, seven health professionals (two family physicians, two residents, one pharmacist, one nurse clinician and one nurse practitioner) and three members of the administrative team.Data collectionData collection included compiled participatory observations, logbook notes and semi-structured interviews, collected between the summer of 2017 to the summer of 2019.Data analysisGhadiri’s identity threats theoretical framework was used to analyse qualitative material and to develop conceptualising categories, using QDA Miner software (V.5.0).ResultsAll professionals with a clinical care role and patient partners (n=9) accepted to participate in the ethnographic study and semi-structured interviews (RR=100%). Transforming the ‘caregiver–patient’ relationship into a ‘colleague–colleague’ relationship generated identity upheavals among professionals. Identity tensions included competing ideals of the ‘good professional’, challenges to the impermeability of the patient and professional categories, the interweaving of symbols associated with one or the other of these identities, and the inner balance between the roles of caregiver and colleague.ConclusionThis research provides a new perspective on understanding how working in partnership with patients transform health professionals’ identity. When they are called to work with patients outside of a simple therapeutic relationship, health professionals may feel tensions between their identity as caregivers and their identity as colleague. This allows us to better understand some underlying tensions elicited by the arrival of different patient engagement initiatives (eg, professionals’ resistance to working with patients, patients’ status and remuneration, professionals’ concerns toward patient ‘representativeness’). Partnership with patients imply the construction of a new relational framework, flexible and dynamic, that takes into account this coexistence of identities.

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