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Social Science & Medicine (factor de impact 2.814):

 Controversies about cervical cancer screening: A qualitative study of Roma women's (non)participation in cervical cancer screening in Romania  

 

 

Abstract

Romania has Europe's highest incidence and mortality of cervical cancer. While a free national cervical cancer-screening programme has been in operation since 2012, participation in the programme is low, particularly in minority populations. The aim of this study was to explore Roma women's (non)participation in the programme from women's own perspectives and those of healthcare providers and policy makers. We carried out fieldwork for a period of 125 days in 2015/16 involving 144 study participants in Cluj and Bucharest counties. Fieldwork entailed participant observation, qualitative interviewing and focus group discussions. A striking finding was that screening providers and Roma women had highly different takes on the national screening programme. We identified four fundamental questions about which there was considerable disagreement between them: whether a free national screening programme existed in the first place, whether Roma women were meant to be included in the programme if it did, whether Roma women wanted to take part in screening, and to what degree screening participation would really benefit women's health. On the background of insights from actor-network theory, the article discusses to what degree the programme could be said to speak to the interest of its intended Roma public, and considers the controversies in light of the literature on patient centred care and user involvement in health care. The paper contributes to the understanding of the health and health-related circumstances of the largest minority in Europe. It also problematizes the use of the concept of “barriers” in research into participation in cancer screening, and exemplifies how user involvement can potentially help transform and improve screening programmes.

 

HPV Research Impact On Primary And Secondary Prevention Of Cervical Cancer - CerCcrom Project


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CONTROVERSIES ABOUT CERVICAL CANCER SCREENING. A QUALITATIVE STUDY OF ROMA WOMEN’S (NON) PARTICIPATION IN CERVICAL CANCER SCREENING IN ROMANIA

Aims
Participation to Romania’s national cervical cancer screening programme are low with 20 % of targeted women (age range 25-64) taking part. Out of these 5.2 % are from minorities such as Roma. We report on our understanding of reasons for low participation rates among Roma-women.

Method
In 2015, we carried out participant observation, qualitative and focus-group interviews among Roma in Cluj and Bucharest. Qualitative content analysis was carried out. We have understood and grouped reasons for non-participation as four major controversies between all actors taking part in the screening-programme.

Results
The most basic controversy was whether the free national screening programme existed, as almost none of the Roma women in the study area were aware of it. As many Roma had experienced discrimination in healthcare and in addition wore without health insurance, they doubted they wore included in the programme, the second controversy. The third controversy among which there existed dissimilar opinions was whether Roma women wanted to take part in the programme. As the programme did not cover follow-up for any screening detected precancerous lesions the fourth controversy was whether taking part would change anything regarding women’s health.

Conclusion
In order to understand screening participation, women must be considered as mediators meaning that we cannot take for granted how they will come to act. Screening attendance must be conceived as an emerging social process during which all involved are equal. To bring attendance rate among Roma up, all actors involved must agree on a common goal and how to achieving this goal.

Co-authors
T. Andreassen , E. Weiderpass , O. Suteu , M. Bumbu , A. Itu, A. Tincu, K. Moen

 


Baveno ENCR EU

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Prezentari poster:

SOFTWARE TOOL FOR INCREASING CANCER DATA QUALITY WITHIN NORTHWESTERN REGIONAL CANCER REGISTRY FROM ROMANIA 
(Poster1.pdf)

Luminita Blaga, Daniela Coza, Alexandru Todescu, Ofelia Suteu, Jan Nygård, Anton Bereschi, Florian Nicula, Adela Moldovan, Ciprian Turcu, Patriciu Achimas-Cadariu

Background & Introduction. The Northwestern Regional Cancer Registry (RRCNV), hosted by the Oncology Institute from Cluj-Napoca, covers six Romanian counties accounting for 14% of surface and 12.7% of population. RRCNV started a project funded within the EEA Financial Mechanism 2009-2014, in collaboration with Cancer Registry of Norway (CRN), aiming to build a web-based synoptic reporting application (OncReg) in order to enhance quality and completeness of cancer data collected by RRCNV.Materials & Methods. We developed a streamlined data collection and communication system, in a .NET environment, to meet an eclectic multi-source information system.

Results. OncReg is designed to provide various health care units with an easy to use tool but with enhanced capabilities for saving time and human resources in activities such as performing classification or information extraction from free text reports. Our software tool has been integrated easily in the daily activities of health professionals involved in cancer care and the feedback from various stakeholders is very favourable. Behind the user-friendly interface a complex data processing is developed  to improve consistency and accuracy of case abstraction and to enhance the minimum data set with high resolution site specific data and geographic data. OncReg also connects with screening databases. Confidentiality, protection and security of data are addressed.

Conclusions. We expect to observe an improvement in completeness and timeliness of regional cancer data and figures as well as an accurate assessment of the efficiency of screening programs on specific target populations and provide an assessment tool for cancer burden in our region. This is expected to lead to improved governance in health care in the NW region, also creating premises and acquired experience for enhancement at national level, regarding one of the major health problems in Romania, namely cancer.

 

INCIDENCE TRENDS AND SURVIVAL OF SKIN MELANOMA AND SQUAMOUS CELL CARCINOMAS IN CLUJ COUNTY ROMANIA 
(Poster2.pdf)

Ofelia Suteu, Luminita Blaga, Florian Nicula, Patricia Suteu, Ovidiu Coza, Patriciu Achimas-Cadariu, Daniela Coza

Background&Introduction. Skin cancers registered in the last decades an increasing incidence worldwide. In Cluj County, in 2011, cutaneous melanoma (CM) ranked 8 in men and 5 in women, in the age group 25-49 years, whereas for skin squamous cell carcinoma (SCC), there is little information about their incidence and time trends.

The aim was to study trends of the incidence of CM and SCC in Cluj County, from 1998 up to 2011, and to examine 5-year net survival between 2006-2010.

Material and methods. Data concerning all cases of CM and SCC, diagnosed between 1998 and 2011, were obtained from the Cluj Cancer Registry. Incidence rates were standardized by the direct method (ASIR), using the world standard population. Trends and annual percentage change (APCs%) of incidence rates were calculated by joinpoint regression analysis. Pohar-Perme estimator was used to examine the 5-year net survival of cases, diagnosed during 2006-2010 and followed-up until 31 of December 2015.

Results. A total of 580 cases of CM (56% in female) and 397 cases of SCC (50.6% in female) were reported. For the period 1998-2011, ASIR for SCC was 2.40/100000 in men, respectively 1.85 in women and for CM-3.84/100000 respectively 4.3. The ASIR of melanoma increased significantly by 7.8% and 7.42% APCs in males and females, respectively. For SCC, the incidence increased with APCs of 9.40% in males and during the interval 2002-2011, by 12.65% APCs in females. The survival rates showed an improving trend during 2006-2010, and they were generally lower in men. Survival for SCC, as well as CM decreased with age and was lower in rural areas and in more advanced stages, in both sexes.

Conclusions. This study reveals a rising incidence of cutaneous cancers in concordance with international trends. These data support the important role for primary and secondary prevention of skin cancers, focused not only on melanoma, due to its lower survival, but also on SCC, in order to reduce their incidence and mortality.

 


Congresul international multidisciplinar “Key Findings in HPV Related Cancer”
     Salzburg, Austria, 15 - 18 iunie 2016

Prezentare orala:

Background / Objectives

Romania has Europe’s highest incidence and mortality of cervical cancer. A national screening programme targeting women aged 25 to 64 with conventional cytology 5 yearly was started in 2012. Primary sample takers are gynaecologists (66%) and GP's (34%). With referral from a GP, testing is free, as is treatment, if cancer is diagnosed. However, re-testing and follow-up of precancerous lesions is not covered. By 2015, 20% of eligible women in Cluj County had participated in the programme, but women without health insurance, from rural areas, and belonging to ethnic minorities, seldom attend screening. We studied possible barriers to participation among Roma.

Methods

In 2015, we carried out participant observation, qualitative interviewing, and focus group interviews among Roma in Cluj and Bucharest. Qualitative content analysis was carried out.

Results

A fundamental barrier to participation was that the screening programme was almost entirely unknown among Roma women. Moreover, when told that the programme was indeed in existence and that primary testing was free, women assumed it was not meant for them. This impression arose from knowledge of women who had taken Pap smears and had had to pay for them. The ubiquity of this impression raise questions about how well known the programme was among gynaecologist and GP's, and to what degree it was being executed according to intentions. While some had good knowledge about cervical cancer, a large majority had very limited insight into medical knowledge about the condition. Yet, almost everyone knew that cervical cancer is potentially serious, and it was a widely shared view that screening would be a very good thing. “If people knew about this, everyone would participate," was the consensus in one focus group. However, that participation and follow-up should be free was considered extremly important. Most women were poor and did not have health insurance, and many worried they would not be able to afford care. Significant uncertainties also emerged about how a screening programme would engage with the Roma community as many had experienced discrimination in health care system and expressed doubts about whether healthcare workers in a screening programme would treat them well

Conclusion

There appeared to be no lack of interest in screening. However, there is a need for information about the programme and how it works, and for positive relation-building with Roma communities. Since familiarity with medical knowledge about cervical cancer was low, the program should make information on the condition widely available. To make re-testing and follow-up of precancerous lesions free, would seem to be important for screening success.

 

Prezentare poster:

Background / Objectives

Background. A national cervical cancer screening program was started in Romania in September 2012, financed by the Ministry of Health. The program is based on conventional cytology. HPV testing is not offered in the public health sector. A pilot study was conducted in the North-Western Region of Romania, aiming to evaluate the feasibility of integrating HPV high risk (hr-HPV) as primary test into the screening program. We present here preliminary results of co-testing with cervical cytology and hr-HPV.

Objectives: A) To estimate the prevalence of HPV infection and abnormal cytology in an ethnically diverse screening population; B) To assess the consistency of screening results using hr-HPV and cytology.

Methods

Methods. A cross-sectional pilot study was conducted. The target population was Roma, other ethnic minorities and other socioeconomic disadvantaged groups from the rural population in the North-Western Region of Romania. Cytological smears and hr-HPV tests were taken concurrently in each woman between June and November 2015 by a mobile health unit. The specimens were tested with Hybrid Capture 2 DNA Test for the qualitative detection of 13 hr-HPV types (1rlu/co cut-off). Positive cytology was considered ASC or worse. Screen positivity rates and agreement between cytology and hr-HPV were estimated by kappa coefficient.

Results

1049 women were included in the study. Their mean age was 44 years (range 20-64 years). Most participants were Romanian (74%), the remaining being Roma (19%), Ukrainian (6%) and Slovakian (2%). The prevalence of hr-HPV was 14% among the Roma, 12% among Ukrainian, 12% among Romanian and 10% among Slovakian women. The prevalence of positive cytology was 14% among Romanian, 7% among Ukrainian, and 5% among Roma women. The population prevalence of positive results was similar for both hr-HPV test and cytology (12%). However, 66% of the hr-HPV positive women had normal cytology and 8% of women had an abnormal cytology with hr-HPV negative test. The consistency of positive results using the two methods was fair (κ=0.25; 95% CI=0.18 to 0.30, p<0.001). A total of 208 women (20%) were positive by one or two tests, while only 41 (4%) were positive for both tests. 100% of HSIL cases were HPV positive, 50% for LSIL, 34.2% for ASC-H, 26% for ASCUS and 20% for AGC.

Conclusion

Conclusions. This is the first study in Romania to assess the prevalence of HPV infection and abnormal cytology in an ethnically diverse and socioeconomic disadvantaged screening population. Our data indicate that co-testing is feasible for earlier identification of high risk groups for cervical cancer in this context.

 

 


  Eurogin Congresul international multidisciplinar “Key Findings in HPV Related Cancer”
     Salzburg, Austria, 15 - 18 iunie 2016




Prezentare orala:
BARRIERS TO CERVICAL CANCER SCREENING AMONG ROMA-WOMEN IN ROMANIA: A QUALITATIVE STUDY
T. Andreassen, E. Weiderpass, O. Suteu, F. Nicula, A. Tincu, M. Bumbu, A. Itu, K. Moen

Prezentare poster:
PRELIMINARY EVALUATION OF CERVICAL CANCER SCREENING BY CYTOLOGY AND HPV TESTING IN NORTH-WESTERN REGION OF ROMANIA
Ș
uteu Ofelia, Nicula Florian, Păiș Rodica, Bumbu Minodora, Coza Daniela, Blaga Luminița, Nicula Bianca, Itu Andreea, Todescu Alexandru, Weiderpass Elisabete


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Numarul 45 (1347) - Strategii pentru controlul cancerului

Autori: Dr. Daniela COZA , Dr. Marius UNGUREANU | 6 Noiembrie 2015

 


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   INTERNATIONAL CONFERENCE    
    MOLECULAR BIOLOGY CURRENT ASPECTS AND PROSPECTS
    CLUJ-NAPOCA, 06-08 NOVEMBER 2015

 

Plenary session 1 - Dr.Florian Nicula:

HPV Research Impact On Primary And Secondary Prevention Of Cervical Cancer - CerCcrom Project


NCIN


Building Institutional Capacity For Increasing Cancer Data Quality
Within Northwestern Regional Cancer Registry From Romania

Luminita Blaga1,2, Alexandru Todescu1,2, Jan Nygård3, Daniela Coza1,2, Florian Nicula1, Anton Bereschi1, 2, Elisabete Weiderpass3,4, Adela Moldovan1,2, Ciprian Turcu1,2, Patriciu Achimas-Cadariu1,7

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*The research leading to these results has received funding from EEA Financial Mechanism 2009-2014 under the Project Contract no 6SEE/30.06.2014

Rezumat publicat in: (2015), Abstracts of poster presentations. European Journal of Cancer Care, 24: p.48. doi: 10.1111/ecc.12330   Factor de impact: 1.564


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ENCR Scientific Meeting and General Assembly Ispra, Italy, 12-14 November 2014

 Cervical Cancer Control For Roma And Other Disadvantaged Groups In North- Western Region Of Romania

Patriciu Achimas-Cadariu1,2, Florian Nicula1, Elisabete Weiderpass 3,4,5,6, Daniela Coza1, Ofelia Suteu1,2, Luminita Blaga1, Adriana Melnic7, Alexandru Todescu1, Anca Burca1.

Full text

*The research leading to these results has received funding from EEA Financial Mechanism 2009-2014 under the Project Contract no 6SEE/30.06.2014


The Federation Of The Romanian Cancer Societies - “Harnessing Progress In Precision Medicine Towards Clinical Practice Of Oncology”, Sinaia, 23 October 2014.

 Prezentări orale:

  • NW Region Cancer Registry – history and perspectives - Daniela Coza
  • Prevention and cancer control programmes in NW Region of Romania – good practice model - Luminita Blaga
  • Organized cervical cancer screening program in north-western region of Romania, as it is today -Ofelia Suteu

*The research leading to these results has received funding from EEA Financial Mechanism 2009-2014 under the Project Contract no 6SEE/30.06.2014


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Annual Meeting, 2-4 September 2014, in Malmö, Sweden

Cervical Cancer Control - Regional Resources And Present Strategies In Organized Screening Program And Cancer Registration, In North –Western Region Of Romania.

Florian Al. Nicula1, Elisabete Weiderpass Vainio2,3,, Daniela Coza1 , Ofelia Șuteu1,4, Luminița Blaga1, Adriana Melnic6, Alexandru Todescu1, Patriciu Achimaș-Cadariu1,4

*The research leading to these results has received funding from EEA Financial Mechanism 2009-2014 under the Project Contract no 6SEE/30.06.2014

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