Newton001-Developing tools to study inequalities in women's access to breast and cervical cancer control activities in Brazil using health-related DB

Lead Research Organisation: London School of Hygiene & Tropical Medicine
Department Name: Epidemiology and Population Health

Abstract

Brazil, like many other low and middle-income countries (LMICs), is undergoing a cancer transition whereby cancers with an infection-related aetiology are being surpassed by those with a non-communicable origin. This transition is particularly evident among women, with breast cancer (BC) having now surpassed cervical cancer (CC) as the most common female cancer in Brazil (estimated number of incident cases in 2012: ~67,000 BC vs. ~18,000 CC).

The Sistema Único de Saude (SUS) was established by the Brazilian government in 1988 to provide universal free access to health care. In 1999-2002 guidelines were issued for women aged 25-59 years to undergo a gynaecological examination every 3 years, and in 2004 for mammographic screening every two years of those aged 50-64, with information systems established to manage these screening activities. SISCOLO, implemented in 1999, records information on all Pap smear requests whereas SISMAMA, established in 2009, records data on all mammograms.

Despite the success of these programs, and the lower BC incidence in Brazil than in the UK (59.5/100,000 vs. 95/100,000 in 2012), BC mortality is similar (14.3/100,000 vs. 17.1/100,000, respectively) and both CC incidence and mortality remain much higher in Brazil (16.3/100,000 and 7.3/100,000, respectively) than in the UK (7.1/100,000 and 1.8/100,000, respectively).

Such disproportionately higher mortality rates are likely to be related to low coverage of the population targeted by screening and late presentation. It is the aim of this Research Partnership to investigate whether this is the case, in the first instance, by creating the tools necessary to study access to early diagnosis and treatment for the two most common female cancers - BC and CC. In particular we will:

1. Gain access to, and link, at a national level, SISMAMA and SISCOLO national data to Censuses, hospital and mortality records, socioeconomic surveys, and Bolsa Familia.

2. Develop a multi-disciplinary conceptual framework to identify demand (e.g. socio-economic status, belief system) and supply determinants (e.g. services availability) of inequalities in health care using such comprehensive data linkage.

3. Strengthen analytic capacity to deal with the methodological challenges raised by interrogating large routinely-collected datasets. These include addressing potential sources of bias affecting the linked data and the adoption of appropriate statistical methodology for examining pathways to inequalities in health care.

Technical Summary

This Research Partnership will aim to strengthen our research capacity in investigating inequalities in access to early diagnosis and treatment for the two most common female cancers in Brazil: breast cancer and cervical cancer.

The planned work will involve:

1. Gaining access to, and linking, at a national level, SISMAMA and SISCOLO national data to Censuses, hospital and mortality records, socioeconomic surveys, and Bolsa Familia.

2. Comparing different approaches to data linkage (e.g. probabilistic vs. deterministic; individual record linkage vs. area-based aggregated level).

3. Developing a multi-disciplinary conceptual framework to identify demand (e.g. socio-economic status, belief system) and supply determinants (e.g. services availability) of inequalities in health care using such comprehensive data linkage.

4. Organising a workshop in the UK to discuss the methodological challenges associated with the analyses of large routinely-collected datasets (e.g. missing data) and the modelling of inequalities in access to health care.

5. Organizing a workshop in Brazil to discuss the findings, and their implications for optimizing strategies for early detection ("downstaging") and treatment of BC and CC cancers in the country and for designing more "in-depth" studies of the demand and supply barriers to health care access.

6. Building research capacity in Brazil by training five Brazilian students/junior researchers through scholarships.

7. Preparing methodological guidelines on "best practice" for: (i) linking health-related databases and (ii) analyzing multi-dimensional pathways to health care, and identifying demand and supply barriers underlying inequalities.

Planned Impact

N/A
 
Description The main findings from this study were:

- Breast cancer is a potentially curable disease if diagnosed and treated early. However, in Brazil, women with breast cancer symptoms are being diagnosed at a very late stage when the disease is too advanced, treatment choices are limited, and consequently survival is poor. This is particularly true for disadvantaged women, i.e. those who were Black or Brown (mixed race) and those with low educational level.

- The 2004 Brazilian national breast cancer control guidelines recommended that all women aged 50-69 years should undergo mammographic screening every 2 years. This study showed that the screening program was unlikely to have contributed to reductions in breast cancer mortality because its coverage was very low and screen-detected mammographic abnormalities were not followed properly. In contrast, resources were being spent screening women younger than 50 years, who were outside the targeted age-groups, and screening those who were eligible to attend more often then the recommended 2-year interval.

- Similar socio-economic and ethnic gradients were also seen for cervical cancer screening with Pap smear.

- Long delays between the timing of a screen-detected of a lesion suspicious of a CIN2+ and diagnostic confirmation, and between diagnostic confirmation and treatment initiation (manuscript with these findings was submitted to Cancer Epidemiology; a revised version was submitted recently in response to the Reviewers' comments)
Exploitation Route Previous national breast cancer control guidelines in Brazil focused unduly on mammographic screening to detect asymptomatic disease. Our findings informed the development of the new national breast cancer control guidelines in Brazil, which were published in 2018, by highlighting the need to give priority to implement effective strategies to downstage breast cancer by ensuring that symptomatic women are diagnosed when the disease is at an early stage and receive timely treatment.

The finding of long delays between cervical screen-detected CIN2+ lesions and diagnostic confirmation, and between diagnostic confirmation and treatment, show that the Brazilian cervical screening guidelines are not being properly followed, seriously compromising the effectiveness of the program in reducing the incidence of, and mortality from, cervical cancer in the country.
Sectors Healthcare

 
Description The study findings on breast cancer have informed the development of the new breast cancer control guidelines in Brazil, which were published in 2018. Our study showed that symptomatic women, particularly disadvantaged women (i.e. Black and Brown women, women with low educational level), are being diagnosed with breast cancer at a very late stage when treatment options are limited and prognosis is poor. These findings highlighted the need to shift the emphasis from screening of asymptomatic women to the implementation of effective strategies for downstaging the disease by ensuring that women with symptoms are diagnosed and treated early when the disease is still potentially curable.
First Year Of Impact 2018
Sector Healthcare
 
Description Participation in the elaboration of guidelines for breats cancer control policies in Brazil
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
Impact The previous national guidelines on breast cancer control policies in Brazil, which had been published in 2004, focused unduly on mammographic screening. WHO does not recommend the implementation of mammographic screening programmes in low- and middle-income countries. The findings from this study provided empirical evidence in support of this WHO recommendation by showing that even an upper middle-income country such as Brazil does not have the logistic resources and expertise required for successfully implementing such programmes. The findings from our study showed that down-staging symptomatic disease by ensuring that women with symptoms of breast cancer are diagnosed earlier and treated timely will save more lives than screening for asymptomatic disease. This is now recognised in the new national guidelines on breast cancer control policies which were published in 2018.
 
Description Collaborators meeting, Rio de Janeiro, 17-19 July 2017 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Update on current research projects; discussion of future research and funding applications
Year(s) Of Engagement Activity 2018
 
Description Collaborators meeting- within the X National Brazilian Congress of Epidemiology 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Overview of challenges posed by cancer research using electronic health records in Brazil; issues of data quality and difficulties in assessing data quality
Year(s) Of Engagement Activity 2018
 
Description Exploiting routinely collected data to investigate the impact of social policies on health in Brazil 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The workshop brought together UK and Brazilian researchers from the UK ( LSHTM, UCL, Imperial College, University of Edinburgh) and from Brazil (Universidade Federal da Bahia, Universidade do Estado de Rio de Janeiro, National Tuberculosis Control Programme, Instituto FioCruz, Rio de Janeiro). A total of 40 researchers that included academics, policy makers and post-graduate students attend the 2-day meeting at the LSHTM.

The focus of the meeting was to explore the issues surrounding the use of routinely collected data (e.g. from national cancer screening programmes) to:
1. explore the main logistic barriers and methodological challenges associated with the access, cleaning and cross-linkage of complex health, administrative and socioeconomic data;
2. understand how these barriers and challenges may affect our assessment of health inequalities and the adoption of impact evaluation methodologies, including mathematical modelling;
3. formulate solutions to overcome or minimise the identified challenges.
Year(s) Of Engagement Activity 2015
 
Description Invited talk at the X National Brazilian Congress of Epidemiology- Prof dos Santos Silva 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Prof Isabel dos Santos Silva delivered an invited t talk entitled "To screen or not to screen for cancer? Evidence-based recommendations"
Year(s) Of Engagement Activity 2018
 
Description Meeting of collaborators 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This was a collaborators meeting held in Rio.
The topics discussed were:
- Early detection of breast cancer in Rio de Janeiro: a study based on data from Information Health Systems (HIS) Ecological study
- Using the data from Rio de Janeiro in the deterministic and probabilistic linkages
- Methodology of linkage used in the ongoing study: current situation and proposals
-Causal inference applied to socioeconomic inequalities and cancer detection
- Challenges: access to data, scale of record linkage, DAGs, missing exposure data

The meeting also include a panel discussion on the plans for future studies in São Paulo, Bahia, Minas Gerais and Rio de Janeiro.
Year(s) Of Engagement Activity 2016