|Year : 2020 | Volume
| Issue : 4 | Page : 700-707
Loss to follow-up after initial screening for cervical cancer: A qualitative exploration of barriers in Southern India
E Vidhubala1, Hemant Deepak Shewade2, K Niraimathi3, Amol R Dongre4, Ramaswamy Gomathi5, S Ramkumar6, Mahadevan B Sankar6
1 Nellai Cancer Care Center (An Unit of Udhavum Ullangal), Tirunelveli; Fenivi Research Solutions, Chennai, Tamil Nadu, India
2 International Union Against Tuberculosis and Lung Disease (The Union), Paris, France; The Union South-East Asia Office, New Delhi; Karuna Trust, Bengaluru, Karnataka, India
3 Fenivi Research Solutions, Chennai, Tamil Nadu, India
4 Sri Manakula Vinayagar Medical College and Hospital, Puduchery, India
5 National Centre of Excellence and Advanced Research on Anemia Control, Centre for Community Medicine, All India Institute of Medical Sciences, New Delhi, India
6 Nellai Cancer Care Center (An Unit of Udhavum Ullangal), Tirunelveli, Tamil Nadu, India
|Date of Submission||20-Jun-2020|
|Date of Decision||27-Jul-2020|
|Date of Acceptance||08-Sep-2020|
|Date of Web Publication||25-Dec-2020|
Nellai Cancer Care Center, Lakshmi Commercial Complex, North High Ground Road, Palayamkottai, Tirunelveli - 627 002, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Background: In India, opportunistic screening is routinely conducted for cervical cancer, but systematic, community-based screening is relatively new. Hence, the uptake and follow-up for community-based screening remain poor.
Objectives: In this study, we aimed to explore the barriers to community-based screening and suggest possible solutions for mitigating the loss to follow-up among screen-positive women from the perspectives of both, the community women (CWs) and service providers (SPs).
Materials and Methods: This descriptive, qualitative study conducted at a non-governmental organization in Tirunelveli district of Tamil Nadu between December 2017 and January 2018 included 11 CWs who completed various stages of screening and five SPs involved in community-based screening. The participants were purposively identified and interviewed face to face using a semi-structured questionnaire. Interviews were conducted in Tamil, following which the transcripts were validated by the participants, translated to English, and analyzed. The reporting was based on the Consolidated Criteria for Reporting Qualitative Research guidelines.
Results: Unawareness and poor understanding of the screening process, fear associated with the procedures and the disease, no financial and family support, and sociocultural beliefs were identified as the barriers to follow-up. Persistent follow-up through phone calls and home visits along with increasing the awareness about the screening process and its benefits, establishing a rapport with the community, and using local community-based organizations to track the CWs are suggested as possible measures to mitigate the loss to follow-up.
Conclusion: Sociocultural, economic, and psychological factors are the main barriers to follow-up after initial screening in cervical cancer screening programs. Conducting population-based systematic screening and awareness programs and keeping the local public healthcare professionals on the frontline along with incentivizing the healthcare professionals and screen-positive women are recommended to improve the adherence to follow-up.
Keywords: Barriers, cancer prevention, cervical cancer, community-based cancer screening, follow-up
|How to cite this article:|
Vidhubala E, Shewade HD, Niraimathi K, Dongre AR, Gomathi R, Ramkumar S, Sankar MB. Loss to follow-up after initial screening for cervical cancer: A qualitative exploration of barriers in Southern India. Cancer Res Stat Treat 2020;3:700-7
|How to cite this URL:|
Vidhubala E, Shewade HD, Niraimathi K, Dongre AR, Gomathi R, Ramkumar S, Sankar MB. Loss to follow-up after initial screening for cervical cancer: A qualitative exploration of barriers in Southern India. Cancer Res Stat Treat [serial online] 2020 [cited 2021 Jan 17];3:700-7. Available from: https://www.crstonline.com/text.asp?2020/3/4/700/304950
| Introduction|| |
In India, cervical cancer contributes to 6%–29% of all cancers among women. Moreover, 1 in 53 women is likely to be affected by cervical cancer in India, whereas in more developed regions of the world, the incidence of cervical cancer is 1 in 100 women., The lower incidence of cervical cancer in the Western countries has been attributed to the systematic implementation of screening and early detection programs. Despite the availability of life-saving treatment options for patients with cervical cancer across various economic strata, the coverage of cervical cancer screening remains low among both, the rich (6%) and the poor (4%). Moreover, the high-risk subgroups (older and poor patients) are less likely to be screened. The National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS) was launched in 2010 by the Government of India. However, despite its integration into the National Health Mission and phased implementation, the NPCDCS is yet to achieve national coverage.
A study conducted in the rural areas of Tamil Nadu, a state in Southern India, showed 25% and 35% reductions in the incidence and mortality of cervical cancer, respectively, after the implementation of screening by visual inspection with acetic acid (VIA) and the “screen-and-treat approach.” Although local, community-based screening programs are conducted by many non-governmental organizations (NGOs) and hospitals, using mostly the camp approach, ensuring follow-up remains a major challenge. In a review conducted by Khanna and Phillips, a nonadherence of approximately 10%–40% was reported in the follow-up. Several studies have identified the various barriers to screening uptake and follow-up after the initial screening. The commonly reported reasons for loss to follow-up across various types of cancers include ignorance of the objective and importance; fear or anxiety of invasive techniques as well as the disease; lack of time, money, and transportation; and child care responsibilities.,
A renowned NGO has been conducting cancer screening programs in the rural areas of Tirunelveli district of Tamil Nadu since 2011. Approximately 30,000 community women (CWs) have been screened for cervical cancer as a part of their programs till date. Women who screen positive (by VIA or Pap smear) at the screening camps are referred to the NGO for further diagnosis and confirmation. Intensive follow-up methods such as multiple home visits and repeated phone calls are practiced. However, in our experience, only 10% of the screen-positive women report to the NGO for further diagnosis (unpublished data). Therefore, in this study, we attempted to explore the barriers to follow-up and suggested solutions for mitigating the loss to follow-up among screen-positive women from the perspectives of CWs and service providers (SPs).
| Materials and Methods|| |
General study details
This descriptive, qualitative study was conducted between December 2017 and January 2018 at an NGO, which is a cancer prevention center conducting primary and secondary cancer prevention activities through camps and awareness programs, located in Tirunelveli district of Tamil Nadu. The study was approved by the Ethics Advisory Group of the International Union against Tuberculosis and Lung Disease, Paris, France (EAG No: 97/17, dated November 16, 2017) [Supplementary Appendix 1], and adhered to the ethical guidelines stated in the Declaration of Helsinki and the Indian Council of Medical Research. Written informed consent was obtained from all the participants before the interview. Reporting was based on the Consolidated Criteria for Reporting Qualitative Research guidelines.
The screening camps are steered by a team of medical and paramedical staff with expertise in cancer screening. Awareness of the process and importance of cancer screening are imparted to the CWs, who are then urged to partake in the screening camp. A few women are directly brought to the screening camp by the community volunteers and self-help groups (SHGs). The camps are conducted in partnership with community-based organizations working in different villages and volunteers from the respective villages. The breast, cervix, and oral cavity are the sites screened. Screen-positive women (by VIA or Pap smear) are then invited to the NGO for further confirmatory investigations. The screening camps and the investigations are conducted free of charge for the participants.
The women with confirmed cervical intraepithelial neoplasia I–III are treated and followed up at the NGO. Those with frank malignancies are referred to tertiary cancer centers. Guidance and financial support (partial or full) are provided to the patients by the NGO, based on their socioeconomic status. The process flow for screening and care is presented in [Figure 1].
|Figure 1: The process of community-based screening conducted by the study center (non-governmental organization) in rural areas of Tirunelveli district of Tamil Nadu. NCCC: Nellai Cancer Care Center, NGO: Nongovernmental organizations, PHC: Primary Health Center, IEC: Information education communication, SHG: Self-help group, CBE: Clinical breast examination, GH: Government Hospital, RCC: Regional Cancer Center, VIA: Visual inspection of acetic acid|
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The study comprised 11 CWs and 5 SPs chosen purposively. The women were chosen from a community where screening had taken place earlier, and only those women who were willing to participate in the interview were included in the study. The SPs were chosen based on their experience with community work related to oncology, and those who agreed to participate were included in the study. As this was a qualitative study, we conducted the interview only for those who were willing to participate, and thus, there were no drop-outs.
The participants were interviewed face to face using a semi-structured questionnaire [Supplementary Appendix 2]. Interviews with CWs were conducted at their residence, while those with the SPs were conducted at the NGO, ensuring privacy. The interviewers developed a cordial relationship with the participants when they explained the research for obtaining their consent. The interviewer, XX was a female alternative medicine (homeopathy) practitioner with a postgraduate degree in epidemiology and the interviewer, YY was a female psycho-oncologist; both were trained in qualitative research. One SP was present along with XX and YY during the interview. The SP was instructed to observe silently and note the responses of the participating CW. The interviews extended from 20 to 40 min to elicit information from the participants until data saturation was reached. To reduce the interviewer and participant bias, the questionnaire was designed to be simple and open-ended, with the questions funneling from general to more specific topics. The interview transcript was read back to the participants for validation. All the interviews were audio-recorded using a mobile phone application and transcribed in the same language (Tamil) by XX. The transcripts were then translated to English by YY, and the descriptive content analysis was performed manually by VV and ZZ. The analysis was then reviewed by YY, and conflicts were resolved through a consensus. The themes that emerged from the content analysis were described and discussed. The participants did not provide feedback on the findings.
| Results|| |
The characteristics of all study participants are presented in [Table 1]. The mean age of the CWs was 45.4 years (range, 38–56 years), while that of the SPs was 38.2 years (range, 24–41 years). All CWs were married and had children. Education among CWs was up to primary school. The SPs had an experience of 3–7 years working with the community through the cancer screening programs at the NGO. Barriers to follow-up as perceived by the CWs and SPs and the possible solutions to the barriers are provided in [Table 2].
|Table 1: Characteristics of the study participants from a rural community-based cervical cancer screening program in Southern India|
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|Table 2: Reasons for not visiting the non-governmental organization for further investigation and treatment after the initial screening at a rural community-based cervical cancer screening program in Southern India|
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Barriers to follow-up
Four key barriers emerged from the content analysis: (1) lack of understanding about the objective of screening and outcome, (2) concerns about the screening process, (3) lack of trust in the SPs, and (4) lack of family and financial support. These barriers were reported by both the groups of participants: CWs and SPs.
Lack of understanding about the objective of screening and outcome
Most CWs did not understand the objective of cervical cancer screening and its outcome. The prevalent notion was that screening is unnecessary for asymptomatic individuals in good health and that screening camps are meant for diagnosis of cancer and other diseases. Therefore, when the CWs were invited for further examinations, they refused. A woman who participated in the screening stated that:
“They called me from the group [self-help group]. I told them that I am uneducated and cannot understand anything. They asked me to visit the NGO only for an examination, so I went for the examination” (CW3).
Another woman stated, “I asked them (SPs) why they were repeatedly calling me, even when there was nothing wrong with me. What if I go to the NGO for an examination and they tell me that I have a problem? What will I do then?” (CW1).
Similarly, one study participant stated that the suffering was pointless when they were healthy:
“It will be painful for 1 or 2 weeks after the examination; it will be difficult to work in the field (farm work). They give tablets, and for a week after the examination, we cannot be normal. So, why should we suffer when we don't have any problem?” (CW6).
A few mentioned that they were invited to the camps for general health examination:
“They said that they are doing a health check-up, but I couldn't go to the high ground hospital (government hospital) leaving behind all the work. But, since they came to our village, I went for the check-up” (CW2).
The reasons reported by most CWs for attending the screening camps were the influence of close contacts and self-help group (SHG) leaders, and a few others were self-referred as they had symptoms (white discharge, bleeding per vagina, and pain).
However, the fear of paying multiple visits and being referred to higher centers were also frequently reported:
“The screening will take time, and the screening camp will be crowded. If they know the benefits, they would come. Also, if we go once, they will ask us to come again and again” (CW5).
Although a few participants acknowledged the importance and benefits of community screening, the understanding of the process and the need for further examinations, confirmations, and management were poor. The purpose of screening in the absence of symptoms was barely recognized.
Concerns about the screening process
Major concerns were the embarrassment and pain associated with the screening procedures. Anxiety due to the usage of instruments (speculum) that cause pain and bleeding was also reported as a barrier. A woman who witnessed her neighbors suffering stated that:
“They [Doctors] insert an instrument inside the body for examination. My neighbor started bleeding heavily and became very sick after that. She scared everyone and asked us not to go for the screening. So, we did not go” (CW11).
Another woman stated, “I fear that they might do anything without our knowledge. I am afraid that they might do something using a knife” (CW8).
She stated, “While conducting the awareness program, we mention that we use an instrument (speculum) for screening. This scares them, and as a result, they do not come forward for screening” (SP4).
“As they are not experiencing any serious symptoms or pain, they think they can get screened later” (SP3).
“Those who come for screening may not necessarily come for follow-up, the reason being fear. Therefore, despite reasoning with them, they often do not come for follow-up, for the fear of detection of cancer. The situation is the same even for schools and colleges. Cancer means fear” (SP4).
Lack of trust in the service providers
The perception of being intentionally misdiagnosed for commercial interests was identified as one of the barriers among healthy, asymptomatic participants.
SPs make repeated calls to ensure the attendance of screen-positive participants for a definitive diagnosis. Some CWs perceived that these calls were made with commercial or vested interests. A woman stated that, “Even if we are fine, you will say that we have one or another problem” (CW11).
Another woman reiterated, “They told my relative that she should get one more test done. But, since she had brought her young child along, she could not wait any longer at the camp. She said she would come later for the test. But, when they urged her to get tested, she left the place without informing them. Once you go for screening, they ask you to come again and again” (CW9).
Many women after testing positive in the initial screening visited other facilities for confirmation.
“I had symptoms, but when they called me, I ignored them and did not believe them; because they called repeatedly. I went to three other doctors as well. They said the same thing. So, I went to another private center and underwent surgery. Now, my symptoms have resolved, so I believe them.” (CW9).
The SPs also confirmed these views, “When we tell them the results (VIA-positive/Pap-smear-positive) and ask them to come for further investigations, they think we are suggesting that they have cancer. They tell us angrily that they don't have any problem, and if we call them repeatedly, they block our numbers” (SP4).
Another SP reported, “We do the screening here, and we ask them to come for a follow-up if they test positive. They don't believe us, but consult several other doctors for their opinions” (SP4).
Puzzled with the response to the follow-up efforts (home visits), an SP stated, “We visit them personally. Even then they do not come for a follow-up. We don't know the reasons or the solutions. When we call them repeatedly, they think we are torturing them for commercial gains” (SP2).
Lack of family and financial support
Women in rural areas who were the primary earning members of their families reported the lack of time and long duration of the screening process as barriers to attending screening camps. Other barriers reported were the lack of family support for domestic and work commitments and family members not accompanying them to the hospital. Women often did not receive domestic, social, financial, or child care support.
“If they ask me to come again, no one from my family will support me. Who will do all my work and who will take care of my children? Only if I work can I earn money” (CW6).
Some women provide the contact numbers of their children, who fail to pass on the follow-up information to their mothers.
“They said they will call me. But, I don't have the telephone, my son has it, and he will not inform me about the call” (CW8).
A woman who lacked support from her spouse for undergoing surgery stated, “They said I require surgery and asked me to bring my husband along. I knew he would not accompany me. So, I took my neighbor along to the high ground (government) hospital, but they asked me to bring a family member. Since I had no support from my family, I went to a private center and got operated on.”
Similar reasons were reported by the SPs as well. “When they don't have the money, they don't want to come for the test. They fear that if they are diagnosed with cancer, they will not be able to afford the treatment. Many women think that if all the money is spent on their treatment, what will be left for the rest of the family?” (SP1).
In addition, the SPs reported disapproval from husbands as one of the barriers: “In many families, husbands do not allow the wives to go for screening” (SP1).
Although screening is performed by female doctors, women do not attend screening because of shyness and embarrassment: “Shyness! We tell them we have women doctors, and even then, they do not come” (SP3).
Myths and perceptions
While we did not intend to explore the myths and perceptions as a part of this study, women shared their myths and perceptions related to cervical cancer which may act as potential barriers to follow-up. They perceived cancer as a fatal, contagious disease that spreads through air and by sharing utensils with patients. Some even perceived it as a consequence of their sins. The fear of cancer was also linked with the stigma associated with it, the fear of social discrimination, and the perceived risks.
“This disease (cervical cancer) occurs in women who have multiple sexual partners. We live in a small village, so if a woman tests positive (for cancer/human immunodeficiency virus [HIV]) in the camp, everyone will come to know about her character.” (CW10).
They described cervical cancer as a wound with maggots in the uterus. The risk factors reported were tobacco, nutritional deficiency, poor genital hygiene, and promiscuity. Removal of the uterus, breast feeding, good physical health, and being disciplined were perceived as preventive or protective measures against cervical cancer. The symptoms of cervical cancer reported were a wound with maggots, stomach pain, white discharge, abnormal bleeding, and weight gain.
Cervical cancer was referred to with the following terms in the local language (Tamil), “puzhu vaiththa pun” (wound with maggot) and “neer katti” (cyst). A few hesitated to use the word “cancer” and referred to it as “that disease.” Women did not want to hear the word “cancer” and were scared that the screening would bring unfavorable results.
“When you merely ask us about it [cancer], it scares us” (CW11).
We did not receive any suggestions on the possible solutions from the CWs despite enquiry. SPs suggested the following solutions to increase the follow-up rates: persistent follow-up through phone calls and home visits, raising awareness about the screening process and its benefits, establishing a rapport with the community, and using local community-based organizations to track the CW. Ensuring the confidentiality of the screening outcome to the CW and using school and college students and survivors as ambassadors to reach out to the community were also suggested.
| Discussion|| |
In the present study, we identified poor understanding of the screening algorithm, fear of screening procedures, lack of trust in the SPs, and lack of social and financial support as the major barriers to follow-up for the diagnosis and treatment of screen-positive women. Suggested solutions were intensification of prescreening information education communication (IEC) activities and partnering with local groups to enable trust building and better engagement. Engaging the NGOs and SHGs in a systematic way and using the survivors as ambassadors were also suggested by SPs.
Although barriers to screening uptake have been studied previously,,,,,, this is the first qualitative study from India exploring the barriers to the follow-up for further diagnosis, confirmation, and treatment after the initial cervical cancer screening in a community-based screening program.
Embarrassment, perceived pain during the examination, fatalism associated with a diagnosis, unsupportive husbands, and lack of awareness about cervical cancer play a key role in poor adherence to follow-up after the initial screening, as identified in our study. Similar barriers to follow-up were noted in other studies for screening of gynecologic cancers.,,, Cultural beliefs and a lack of available services were also deemed as obstacles to follow-up among African-American women in a study conducted in Massachusetts. A systematic review conducted by Devarapalli et al. identified the barriers for undertaking cervical cancer screening in low- and middle-income countries. Lack of knowledge and awareness about cancer and its treatment, the belief that only symptomatic women need to undergo screening, embarrassment or shyness, painful procedures, fear of cancer diagnosis, and anxiety and fear associated with screening procedures were identified as barriers. Other reported barriers included the lack of time, time-consuming and expensive screening procedures, and lack of support and approval from the husband. These reports suggest that similar causes of loss to follow-up after screening have affected all countries over the years, making this a significant public health issue.
In the present study, it was observed that women attended screening on the recommendation of close contacts and SHG members without any understanding of the screening process. Therefore, these close networks in the community could be empowered to improve the follow-up rates post-screening.
Our experience at the NGO, as an SP, shows that phone calls and home visits were the follow-up strategies used. In rural settings, many middle-aged and older women do not have mobile phones and provide their husbands' or children's phone numbers when asked. In such cases, the family members were informed about the results, along with a request that the patient should visit the center for further investigations. In addition to phone calls and home visits, the NGO in this study engaged in tracking and encouraging CWs to adhere to the follow-up. This increased the follow-up rate from 9.2% in 2015–2016 to 28% in January–March 2019 (unpublished data). An Indian study recommended using a standardized training regimen that maintained the competency of test providers; collaborating with community-based organizations that used health education for recruitment of participants; and employing the screen-and-treat method to reduce the loss to follow-up. Patient navigation and structured interventions or programs have been reported to improve the follow-up among patients with breast and cervical cancers.
As per the solutions suggested in our study, resources need to be allocated to intensify the IEC activities to educate rural women about the screening procedures. The authors opine that community mobilization and education, peer-to-peer engagement, and installing systems to track and follow-up women are essential to mitigate the barriers and increase the success rates of screening programs. Increasing access to cervical cancer screening services within communities is important to address challenges in the healthcare system, such as distant healthcare facilities and transportation costs.
A study showed that providing information regarding cervical cancer and its screening, making personalized telephone calls, and issuing letters with a fixed appointment increased the cervical cancer screening coverage. Theory-based cervical cancer educational interventions increased the participation of women in the screening, particularly of women with low literacy. A systematic review identified 38 interventional trials and reported a significant association of the use of invitation letters with fixed appointments and a weak association of educational interventions with participation of women in cervical cancer screening. The relevance of such reports from developed countries needs to be explored in the developing ones.
In India, patients are provided incentives for free regular testing to increase their compliance with several public health programs aimed at reducing infant and maternal mortality, as well as in the tuberculosis, leprosy, and HIV settings.,,, Considering the socioeconomic background of the CWs, similar strategies could be adopted to prevent and control non-communicable diseases, as these can cause a tremendous economic burden at later stages. Currently, in Tamil Nadu, the screening programs are neither covered under any insurance scheme nor incentivized. As cancer screening is a preventive medical service, greater efforts should be taken to include cancer screening under insurance coverage.
Furthermore, the healthcare team that conducts the camp-based cervical cancer screening visits the village only on the day of the camp. Integrating screening into the existing healthcare system and partnering with the community healthcare providers may help gain the trust of the CWs and subsequently improve the follow-up rates. Cervical cancer screening services could be mainstreamed with facilities such as antenatal care, family planning, or postnatal care, which would increase screening uptake and build trust. Moreover, screening results should be routed through the public healthcare system for the localization of content.
The purpose of screening is to improve the cancer care services for a population with diminished accessibility to cancer care. However, a high rate of loss to follow-up results in patients remaining untreated even after a suspected diagnosis of cancer. A high loss to follow-up rate hinders the realization of a decrease in cancer mortality and morbidity; this emphasizes the need for an intensive follow-up process.
Our study has one limitation that relates to the small number of participants who took part in the study, which was based on the number of women who tested positive for cervical cancer. However, the study generated rich and new themes to barriers and solutions to follow-up.
| Conclusion|| |
A lack of understanding about the disease and the screening process and its outcome coupled with poor socioeconomic status and distrust in the healthcare system hampers adherence to follow-up after positive results on initial screening in a community-based screening using a camp approach. Intensifying the information-education-communication activities, involving the healthcare system in the screening process, and incentivizing the healthcare professionals and screen-positive women to attend follow-up may help in completing the cancer care continuum.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| Supplementary Appendix 2: Data Extraction Sheet and Questionnaire|| |
In-depth interview guide: Community women
- What do you know about the disease cervical cancer?
Probes: Symptomatology, preventable and treatable if detected early
- Do you know what this screening program all about?
- What made you to attend the screening program?Probes: Symptoms, canvased by health workers/volunteers
- Do you know any nearby hospital for cancer screening? What is the distance for you to reach the nearby health facility?
- If you have any doubts regarding health issues to whom will you ask?
- What are all the challenges you faced while coming for the screening and what are all the measures you took to overcome them?
- Probes: Fear of diagnosis, beliefs, and stigma
- What were the reasons for not attending the follow up? (For those who did not come to follow-up)
What were your reasons and expectation for attending the follow-up?
- Do you feel the screening programs like this are important, and why/why not?
- Some people are not coming for regular follow-up. What do you think are all the possible barriers for coming?
In-depth Interview guide: Healthcare providers
- Can you describe your role in the screening program to me?
Probes: Type of work, length of time working, satisfaction with work
- Why do you think screening for cancer is important?
- How would you describe patients' retention in the screening as well as in the treatment pathway? Can you give me some examples of patients with good retention, and those with poor retention?
- What do you think are the reasons that patients either continue or discontinue with the screening and treatment pathway?
- What, in your opinion, are the possible measures that can be taken to avoid discontinuation from the screening and treatment pathway?
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[Table 1], [Table 2]