Information needs during cancer care: qualitative research with advanced cervical cancer patients in Brazil, China, Germany, and the United States

Highlights

• •Information on cervical cancer can be an empowering tool for patients with advanced cervical cancer.
• •Patients were motivated to seek information about treatment options/side effects, prognosis, symptoms, and cause of cancer.
• •Finding negative, confusing, conflicting, or unreliable information can be an obstacle to information searches.
• •Physicians are trusted sources of information and inspire confidence in patients’ treatment plans.
• •When patients’ information needs are met, patients enjoy a more positive treatment journey.

Abstract

Objective

Information needs for advanced cervical cancer patients have not been well studied. Our aim was to understand key drivers and barriers to seeking information, the best means of information delivery, and how this information affects the patient’s treatment experience.

Methods

This was a qualitative study among international cohorts to assess the information needs of adult patients diagnosed with persistent, recurrent, or metastatic cervical cancer. Semi-structured interviews were held with patients of diverse demographic and socioeconomic backgrounds within two years of obtaining their cancer diagnosis. NVivo qualitative analysis software was used to identify themes that emerged from the data.

Results

In 2021, we interviewed 98 patients from Brazil (n = 25), China (n = 25), Germany (n = 20), and the United States (US) (n = 28) with a mean age ranging from 38.6 to 54.2 years. Becoming aware of treatment options and understanding prognosis were key motivators for seeking cervical cancer information. This information made patients feel more informed and confident in their care. Physicians were the preferred distributor of information due to their credibility and ability to only share information pertinent to the patient’s specific stage and type of cancer. The primary challenges for seeking information were finding trustworthy resources, feeling overwhelmed with negative information, and understanding the content and relevance to their diagnosis.

Conclusions

There is an unmet need for readily-found information on advanced cervical cancer that is credible, easy to understand, individualized, and stage-specific. Providing patients with this information could help them achieve a more satisfying treatment experience.

1. Introduction

Cervical cancer is the fourth most common cancer affecting women worldwide, with an estimated 604,000 new cases and 342,000 deaths in 2020 (Sung et al., 2021). The majority of cases occur in less developed regions where screening and human papillomavirus (HPV) prevention are not as widely available (Sung et al., 2021, Cohen et al., 2019, WHO guideline for screening and treatment of cervical pre-cancer lesions for cervical cancer prevention [Internet]. 2nd ed. Geneva: World Health Organization;, 2021, Saraiya et al., 2015;107(6):djv086.).

In the advanced setting, single-agent chemotherapy; bevacizumab in combination with chemotherapy; and pembrolizumab in combination with chemotherapy, with or without bevacizumab, for tumors that express PD-L1–positive tumors are the recommended frontline regimens; however, these regimens rarely result in long-term survival without recurrence (Abu-Rustum et al., 2021). Options for subsequent lines of therapy include tisotumab vedotin, checkpoint inhibitors for PD-L1 positive tumors, and chemotherapy. With several treatment options available for cervical cancer, patients face a high amount of uncertainty when researching their treatment options and deciding on a course of care. In the clinical setting, patients supported by their physician must balance efficacy with side effects to maintain an acceptable quality of life. Information about the stage of disease and treatment options can aid patients in this decision-making process and help patients set realistic expectations for their treatment. In turn, patient engagement in the decision-making process is generally associated with greater confidence in a treatment decision, satisfaction with a treatment, greater levels of mental health and self-efficacy, and greater trust in the provider (Kane et al., 2014).

Previous studies in high-income countries show that patients with women-related cancers strongly desire information about their diagnosis, treatment, and post-treatment stages of their disease; however, this research focuses on breast cancer and ovarian cancer (Stewart et al., 2000). Very few qualitative studies have reported on cervical cancer information needs. Several drivers for seeking information were identified in these studies, such as the desire to know more general information about cervical cancer, understanding how the disease will affect the patient’s life, exploring what treatment options are available and how treatments may affect the patient’s body, and learning what caused the disease and how it could have been prevented (Noh et al., 2009, Park and Park, 2014). Some barriers identified were patients feeling inappropriate asking questions to medical professionals, not wanting to waste the medical professionals’ time, and wanting to wait to ask questions (Long et al., 2016).

Globally, there has been recognition that national health policies for cancer should consider the financial, social, cultural, and geographic barriers that prevent many patients from accessing timely cancer care (Ginsburg et al., 2017 Feb 25). HPV infection and cervical cancer may be associated with the stigma of incautious behavior related to beliefs about multiple sexual partners or failing to get screening, with gender and social norms being notable facilitators of stigma. Therefore, stigma, treatment-seeking behavior, information-seeking behavior, and treatment patterns can vary across countries and cultures (Brookfield et al., 2009 Jan 1, Sousa et al., 2022 Sep 9, Buskwofie et al., 2020 Apr 1, Xie et al., 2020). There is a need for a richer, more contextualized understanding of the patient narrative that accounts for the diverse challenges patients may face in different settings and environments.

This study aimed to assess the information-seeking behaviors among a diverse sample of patients with persistent, recurrent, or metastatic cervical cancer and to determine what patients need to feel confident in making treatment decisions.

2. Methods

2.1. Study design

This study was a qualitative assessment of the information needs of adult patients diagnosed with persistent, recurrent, or metastatic cervical cancer. Patients from Brazil, China, Germany, and the US with persistent, recurrent, or metastatic cervical cancer participated in 60-minute telephone interviews. A semi-structured interview guide was used for concept elicitation. These countries were selected to represent those with developed healthcare systems and those with developing healthcare systems.

2.2. Eligibility Criteria

The study population consisted of patients ages 18 and older; diagnosed with persistent, recurrent, or metastatic cervical cancer within the two years of obtaining their initial cancer diagnosis; and who have already decided on their treatment plan. Patients excluded from the study were those: 1) previously treated with systemic therapy before a diagnosis of metastatic or recurrent disease; 2) not fluent in the local language; 3) not providing informed consent; or 4) had hearing difficulties that would make a telephone conversation challenging.

2.3. Sampling

Recruitment sub-quotas were set for the state of residence, type of health insurance, type of community (urban, suburban, or rural), race, and education level to ensure diversity within each country; stratification was not an aim. Countries with heterogenous populations had a larger sample size to capture the diversity within the country.

2.4. Recruitment procedures

Convenience sampling was used in this study. Multiple channels were used to recruit a diverse sample of patients in each country, including physician referrals, patient advocacy groups, databases of patients who have opted into research studies, social media, direct marketing, and website banner placements; with this approach patients are made aware of the study and given the opportunity to learn more. Patients received an incentive for their participation. Eligibility was not limited to women who could report their staging, as we did not wish to exclude women with lower health literacy or inability to recall.

2.5. Interview guide development

The English interview guide was developed by the study team. Pilot testing of the US interview guide was conducted to refine the interview guide. The final English guide was translated into Portuguese, Mandarin, and German, and local moderators reviewed the guides for refinement of the translations.

2.6. Reflexivity

The interviews were conducted by experienced moderators with expertise in oncology, women’s health, and patient journey interviews. Female moderators were used to reduce interviewer bias. A single moderator conducted interviews in each country; the US moderator trained moderators in Brazil, China, and Germany to ensure consistency of the interviews across all countries.

2.7. Interview procedures

Patients were screened and consented. The study team was present for some US interviews, and all interviews were audio-recorded. The study protocol was reviewed by Pearl IRB and received Exemption Status on November 24, 2020. Recruitment began in January 2021 and closed in July 2021.

2.8. Analysis

Verbatim transcripts were developed from the audio recordings. The transcripts for Brazil, China, and Germany were translated from the native language to English by a bilingual certified transcriptionist to ensure no loss of the patient voice during translation.

An inductive approach rooted in grounded theory was used for data analysis rather than a deductive approach, as no previous research was available.

The researchers developed familiarity with the qualitative data by reviewing a sample of transcripts from each country. Thematic analysis was performed by two coders, trained and experienced in qualitative data review and analysis, and one reviewer. The reviewer, a senior research scientist and study advisor, assessed the codebook for accuracy and comprehension, resolved discrepancies that arose among coders, and advised on the structure of the codebook. Key themes emerging from the data were identified and coded, and quantitative counts of the codes were obtained. A qualitative analysis software program, NVivo Plus (QSR International Pty Ltd. Version 12, 2018), was used to generate the initial codes. Data were collated systematically across the entire data set by considering all data associated with each potential theme and its relevance; thematic saturation was achieved. Collaboratively, the researchers reviewed and refined each theme in detail, explored the relationships between the themes, and developed theories to explain the phenomena of interest. The COM-B (Capability-Opportunity-Motivation-Behavior) theoretical framework was used to identify drivers and barriers to seeking information among patients with persistent, recurrent, or metastatic cervical cancer. Other behavioral models may apply, but COM-B is a well-published behavioral framework that examines drivers and barriers in order to elucidate the concepts that impact behavior and point to actionable support for these behaviors. The major themes were selected based on being internally coherent around the central concept of information-seeking, consistently expressed in the data (not anecdotal), and distinct (not overlapping).

3. Results

Between January 2021 and July 2021, 98 patients with persistent, recurrent, or metastatic cervical cancer from Brazil (n = 25), China (n = 25), Germany (n = 20), and the US (n = 28) participated in this study. The timing of this study coincided with the global COVID-19 pandemic, and the majority of patients (65.3%) obtained their most recent cervical cancer diagnosis during this period.

Details regarding patient characteristics are shown in Supplemental Table 1. The mean age of the patients varied by region, ranging from 38.6 years in Brazil to 54.2 years in Germany. Among patients who could recall their staging at initial diagnosis, Stage II was most reported. Most patients recalled their staging as Stage IV at the time of the interview, except in Germany, where 60% of the patients recalled their staging as Stage II.

Table 1.

Positive feelings associated with cancer information search

Theme	Quotes
Cancer information search gave patients feelings of confidence and empowerment	CN22: The online information exactly describes what my doctor prescribed, so I felt more confident.CN01: I read this information and felt reassured and much better. …It is helpful and beneficial for me.BR01: It's very good to understand. It is very good knowing what you will go through, so you can prepare yourself for what comes ahead. I prefer to understand.US04: There are so many different stories out there, but I was empowered to take it for me and what was the best thing for me to do. …I really felt empowered that I’m taking my life in my hands, and I’m going to fight the fight. I’m going with the aggressive treatment. I’m not backing down. [I] just got in the mindset of I’m fighting it, and this is what needs to be done.US06: I was taking a sense of control. I was doing something for myself.US04: The success stories that I found online…[of] people…at stage II or stage III still had the motivation to fight, and get rid of this, and fight for their lives. Me, being at stage one, it just made me feel like I can fight too. I can fight this. There’s no reason I can’t fight. It’s really inspirational for me to just hear those words from other people.
Cancer information search gave patients feelings of connectedness	DE05: Well, the feeling that I’m not alone with this, and that there are others who are also enduring it all. And that you have to pull yourself together and not just complain. And you have to go through with it. And you shouldn’t complain because the people around you will go crazy if you’re constantly complaining. It can get really terrible with such an illness. And you manage it better that way instead of acting like a little precious snowflake, you know?US06: I think it was, if anything, a positive influence because it led me to information, but also reminded me I wasn’t the only one out there. I just felt included and that I was a part of a group. And then also just knowing there have been so many people, especially when I would search success stories. There have been so many people that have been in remission and have been for a long time.BR11: Look, initially, it was despair. I won't lie to you. It was despair because I think I was too hasty, and I was very emotionally shaken. So, it is something I do not indicate for other patients. But at the same time, this made me gather information very quickly. Far from being technical on it – I am not – but I could, in this virtual group I participated in, support many other women who didn’t have the same…[who] didn’t find in their doctors the same trust, information, or that had less education, fewer possibilities of access to information. So, I tried talking there, being useful to others.

Note: CN, China; BR, Brazil; DE, Germany; US, United States.

Information-seeking needs emerged as the overarching theme from the qualitative interviews. Four central themes were derived from the data: drivers for seeking information, confidence developed from seeking information, patient dependence on physicians for information search support, and challenges to seeking information.

3.1. Theme 1: Drivers for Seeking Information

Patients extensively discussed their reasons for seeking information about their cancer care. Overall, the primary drivers for seeking information were to explore treatment options and understand the survival rate for each stage of cancer. One patient noted that they were “particularly interested in lifespan outlook. I was looking for, ‘how long do you live?’ …What does the endgame look like?” (US12). Another patient explained, “I was looking for [the] best treatment regimens, which are supposed to have great efficacy. I searched the treatment results of other patients online” (CN11). Other key drivers included learning more about their diagnosis, symptoms, risk factors, medications, and treatments for cervical cancer. Less commonly reported reasons were to learn about the side effects and risks of treatment, read patient narratives, confirm the information shared by their physician, and look for information missed during an office visit.

Region-specific differences were observed (Supplemental Figure 1). US patients most commonly sought to learn about their diagnosis, symptoms, medications, and treatments. In China and Germany, patients most often searched for treatment options. Chinese patients also frequently searched for information on prognosis, risk factors, how diet and nutrition can aid in better outcomes, and traditional Chinese medicines. Prognosis and whether there is a cure were the most frequently reported drivers for information-seeking in Brazil.

Figure 1.

Feelings related to cancer information search according to country.Note: Patient US30 was diagnosed with advanced cervical cancer over two years after obtaining their initial cancer diagnosis. While the patient was initially diagnosed in November 2018, she could vividly recall details about her cancer care journey, treatments, and information-seeking behaviors. The total number of feelings mentioned in each country may not equal the total number of patients interviewed in each country due to patients discussing more than one feeling related to their information search. As the discussion followed a semi-structured interview guide, not all questions were addressed by all patients.

3.2. Theme 2: Confidence Developed from Seeking Information

Information regarding treatment options and what to expect during the treatment journey was instrumental in helping patients feel informed and confident in their care (Figure 1). This information eased patients’ fears about treatment, confirmed what their physician discussed with them, and reassured patients about the treatment recommendations provided by their physician. One patient explained, “It was more to help…to see that chemotherapy wasn’t a big deal. It wasn’t all that I was thinking” (BR10). Some patients expressed that this information gave them a sense of control over their disease, saying, “it is very good knowing what you will go through, so you can prepare yourself for what comes ahead” (BR01). Others found that this information made them feel empowered to fight the disease and tackle the treatment head-on (Table 1).

Patient stories were an influential tool for helping patients feel hopeful and strong. The most impactful stories described positive outcomes and the effectiveness of their treatment. Stories also provided patients with a sense of connectedness with other cervical cancer patients and prevented patients from feeling isolated (Table 1). One patient explained that patient stories provided her with “the feeling that I’m not alone with this, and that there are others who are also enduring it all” (DE05). Overall, participants reported patient stories were the most meaningful information found in their personal research.

3.3. Theme 3: Patients Depend on Physicians for Information Search Support

Patients often developed a strong, trusting relationship with their physicians over the course of their care. This trust led patients to value information the most when it was received directly from their physician (Table 2). One patient explained, “I trust the doctor. …I don’t think it’s necessary for me to find extra information, as it will increase my mental burden. In my mind, I feel my health improves a lot. So it’s no need for me to find other information” (CN25). If patients did search for additional information to supplement what their physician offered, they relied primarily on their physician to answer questions that stemmed from their research; however, most patients reported not having questions for their doctor.

Table 2.

Patients depend on physicians for information search support

Theme	Quotes
Patients value when information is received directly from their physician	BR07: I found [the information the physician provided] interesting that it was explaining everything that was going to happen, from the beginning of the treatment to the end. Everything was explained, so this material, this contact with the professionals, reassured me. I was nervous, and it ended up reassuring myself.CN08: [The doctor] saw many patients with the disease, so he knew a lot about it and was capable of proposing the most suitable and effective regimen.CN11: [The information provided by the doctor] helped to comfort me.DE05: I relied entirely on the doctors. What can you do as a layperson? …The doctor knows what they’re doing, and that’s what I oriented myself on. The more you look up and look at and look for, the more confused you get.US01: My oncologist has been my rock, led me, given me answers.US13: I found [the information the physician provided] to be quite helpful. I found that it allowed me to have a better understanding of what I needed to do, and get things a bit organized, and just basically make sure I have the nuts and bolts of what treatment was, and how long that would go, and what to look out for. What was important to do. What was important not to do.
Patients value when physicians encourage them to ask questions and provide a means to ask their physician questions	BR10: I saw him and told him, ‘Doctor, I need to talk to you, without consultation,’ because he has always seen me. He was an angel in my life. Ever since he found out about the disease, he referred me and told me, ‘Whenever you need, you can come here.’BR14: I did a lot of research, you know? Many times, Google killed me, you know? And I was crying desperately. Then the doctor told me, ‘when you have any questions, you can ask me, and I will answer you the best possible.’BR21: He said he wouldn’t leave me. That he would be by my side. That anything I needed… he even gave me his personal phone number, you know? Anything the doctor there – the oncologist – told me, and I didn't understand it, he said I could ask him directly because I already had more contact with him.DE10: My gynecologist…really supported me well. She coordinated the appointments, she gave me a telephone number to turn to with a contact partner. So I thought that was really good.DE11: [If] I’ve got more questions, I’ll ask my doctor because that’s more important to me than reading something somewhere. Because maybe that way you’d be opening doors that don’t really come into question for you. Where you might be importing even more worries into your mind.US02: If there were any other resources that I needed from his office or any other questions that they could answer, if I was unsure of anything, not to hesitate to reach out. I think having that initial conversation put me a little bit at ease as to knowing that I wasn’t going to be navigating and trying to make all of these decisions and finding things out on my own. That there was a very organized way in which they were going to do things, and it was pretty much laid out.US31: [My doctor] will spend a lot of extra time with me, answer any questions I have, tell me anything I want to know. If I have anything that I’m concerned about, he will be there, and I can call him at any time.

Note: CN, China; BR, Brazil; DE, Germany; US, United States.

Because of the physician’s wealth of knowledge and expertise, the information provided by the physician inspired confidence in patients’ treatment plans. Patients also highly depended on their physician’s recommendation when choosing a treatment plan. One patient explained, “The confidence my doctor brought to me [when deciding on a treatment plan] …was really very influential. Why did I have confidence in my doctor? It’s because she is specialized in this area and with rich experience. She could handle the difficulties. It was very important” (CN23). Patients discussed other aspects of their cervical cancer journey with their physician, including the steps following diagnosis, treatment side effects, causes of cervical cancer, the potential for recurrence, prognosis, and efficacy.

Physicians played an important role in facilitating and empowering patients’ information-seeking behaviors. Several patients reported that their physician encouraged them to ask questions that may arise during their treatment journey. In some cases, physicians even provided their telephone numbers to answer patient questions (Table 2). This brought comfort, eased stress, and lightened the burden of obtaining information about their cancer. Patients felt like they had a trusted advisor to navigate the treatment journey rather than trying to understand all aspects of their care by themselves. One patient explained, “If there were any…questions that they could answer, if I was unsure of anything, [the physician said] not to hesitate to reach out. I think having that initial conversation put me a little bit at ease as to knowing that I wasn’t going to be navigating and trying to make all of these decisions and finding things out on my own” (US02). Patients also reported that their physician cautioned them about inaccurate and conflicting information online. This caused some patients to depend solely on their physician for information to relieve themselves of this concern. One patient explained, “[if] I have more questions, I’ll ask my doctor because that’s more important to me than reading something somewhere. Because maybe that way you’d be opening doors that don’t really come into question for you. Where you might be importing even more worries into your mind” (DE11). By offering to be patients’ trusted source of information, the emotional component of the patient-physician relationship was strengthened, which patients described as deeply valuing.

3.4. Theme 4: Challenges to Seeking Information

While some patients found information on cervical cancer to be helpful, patients from all countries except the US reported more negative feelings than positive feelings about their information search. The predominant feelings associated with information searches were fear, anxiety, depression, or stress (Figure 1, Supplemental Table 2). Several patients reported not performing research due to the expectation of finding negative information. Patients were also deterred from seeking information because of the overwhelming amount of information available, failing to find the desired information, not finding the information helpful, and finding conflicting information. One patient explained, “I was overwhelmed because I wasn’t sure of what I was going to find. They have that saying, “the World Wide Web.” You just don’t know what was going to be accurate, what am I going to find? Is it going to tell me am I going to die tomorrow? I was overwhelmed because I wasn’t sure what was going to be true. What was I going to find. What was I not going to find. Is there not going to be an answer? Is there going to be an answer?” (US05).

Another key obstacle in searching for information was not understanding the content of the research. A lack of information in layperson’s terms was the most significant source of confusion. One patient explained, “They certainly should write it so that laypeople – and these are the patients, after all – can understand it. Not for stupid people…they should write it so that people can understand it, and not make you Google 5,000 words in order to understand the whole text” (DE16). The patients’ ability to understand the information from their search varied among regions (Figure 2). Chinese patients most frequently reported that some information was hard to understand, and over half of Brazilian patients reported becoming confused or not understanding some information. Conversely, half of German patients and over half of US patients reported understanding the content of their research.

Figure 2.

Participant feelings related to their level of understanding the information in their research according to country. Note: Patient US30 was diagnosed with advanced cervical cancer over two years after obtaining their initial cancer diagnosis. While the patient was initially diagnosed in November 2018, she could vividly recall details about her cancer care journey, treatments, and information-seeking behaviors. The total number of feelings mentioned in each country may not equal the total number of patients interviewed in each country due to patients discussing more than one feeling related to not understanding the information in their research. As the discussion followed a semi-structured interview guide, not all questions were addressed by all patients.

As a barrier to seeking information from family and friends, women frequently described receiving negative reactions from their loved ones when sharing their diagnosis (Supplemental Table 2). Sixteen women in total discussed how others reacted to hearing about the cancer diagnosis. Eleven described negative reactions from others including worry, sadness, shock, a lack of understanding, expectation of stigma, and giving unwanted advice.

This study did not emphasize the financial or geographical limitations of seeking information, as these have been studied in the context of access to care (Brookfield et al., 2009 Jan 1, Sousa et al., 2022 Sep 9, Buskwofie et al., 2020 Apr 1).

4. Discussion

This study brought light to understanding the patient’s voice, which will allow creators of cervical cancer information to better support patients as they make informed treatment decisions. We found that patients across all regions seek information actively, though the primary motivators for seeking information varied by region. These differences could be arising from varying social and cultural factors that influence treatment options, treatment preferences, and the stigma associated with having cervical cancer (Xie et al., 2020, Niksic et al., 2016, Tejeda et al., 2017, Peterson et al., 2021;153:106849.). Additionally, financial and geographic limitations may impact the information patients seek.

Our research suggests that there are unmet needs for seeking cervical cancer information in Brazil, China, Germany, and the US. Patients’ fear, anxiety, depression, stress, and confusion may lead them to defer or avoid searching for information.

Finding the desired information on cervical cancer can be an empowering tool for patients with persistent, recurrent, or metastatic cervical cancer. When information needs are met, patients can feel hopeful and strong, despite their cancer diagnosis. Our research found that the information that resonates with patients is positive and emphasizes patient success stories. This prevents the patient from becoming overwhelmed with the psychological aspect of having cancer. Additionally, information about treatment options and what to expect along the treatment journey was particularly important for patients to feel informed, prepared, and confident in their care. Another study also observed the importance of information to the patient’s care, finding that it helped patients cope with their breast cancer, feel more in control of their disease, and feel confident in making treatment decisions (Rees and Bath, 2001). Information that is appealing to patients is easy to find, easy to assess with regard to credibility, and understandable to the patient. While patients desired to find understandable and credible information, our research did not reveal what this would look like. A study among Chinese patients found that only a small percentage of online educational materials for cervical cancer were suitable for readers with a middle school education or less (Zhen et al., 2019). Another study among South Korean women found that narratives about cancer experiences were the most easily understood forms of cancer information (Noh et al., 2009); however, the credibility of the information shared in patient narratives was not addressed. Further study is warranted to understand how to remove this barrier in the patient’s information search. Information is more likely to be accepted if it is consistent with what the patient will hear from their physician, as it builds credibility to the information source. This enables patients to develop a trusting relationship with their physician by confirming what is shared during appointments. An advantage of physicians distributing information is that it allows physicians to tailor information to the patient’s stage and type of cervical cancer. This is paramount, as it prevents patients from becoming overwhelmed emotionally and fearing the worst outcomes. Our research identified that the fear of finding negative information was a key deterrent to seeking information; therefore, providers of information need to consider this as they produce resources for patients with cervical cancer.

The physician can be an important ally in the patient’s search for information. In this study, the most effective approach for disseminating information was for physicians to discuss it directly with patients. Patients placed deep trust in their physicians to provide current and accurate information, which may not be something patients felt they could reliably find in their own research. When patients sought information beyond what the physician provided, patients were empowered when their physician encouraged them to ask questions about their search and provided a means to communicate their questions to the physician as they seek, confirm, and assimilate information. In this manner, many patients felt they participated in their treatment decision, even while deferring to the physician’s recommendation. We found that patients who are discouraged from asking their physician questions may have a negative experience with treatment selection. Unsurprisingly, one study found that this healthy physician-patient discussion about cancer information often leads to better treatment satisfaction due to patients feeling more informed about their care (Martinez et al., 2009).

4.1. Strengths and Limitations

This study’s strength is its ability to understand the patient narrative based on a qualitative approach to collecting information. This is often lost when conducting quantitative research. The richness of the data collected from qualitative research conveys the patient’s emotion and experience of their information search. In our study, patients were interviewed within two years of obtaining their cancer diagnosis and were able to recall emotions and experiences. As a result, we more clearly understand the impact of the drivers and barriers revealed by our research.

Another advantage of the study is the diversity of the sample. To our knowledge, this is the first global study that interviewed patients with differing levels of healthcare. Previous studies reporting on cervical cancer information needs focused on narrow samples based on the type of treatment received (Park and Park, 2014) or geographical location (Park and Park, 2014, Long et al., 2016, Martinez et al., 2009). Within each country, we achieved a heterogeneous population of patients concerning their state of residence, type of insurance plan, type of community (urban, suburban, rural), race, and education level.

Despite the diversity of patients in this study, some subgroups of patients may not be represented due to the sample size. It is unknown whether our findings could apply to transgender men or immigrants not fluent in the local language. In China, the sample of patients did not include a representative population of educated patients. Caution should be used when generalizing our results across an entire population. It should also be considered that participation in this study lends itself to a self-selection bias in the education level of the patients, as a certain level of understanding of the patient’s disease is required for the study.

5. Conclusion

This research suggests that patients with persistent, recurrent, and metastatic cervical cancer routinely seek information on treatment options, outcomes, staging, symptoms, etiology, and side effects to arrive at an informed treatment decision. Credible resources and messaging for these patients should be easy to find, easy to assess with regard to credibility, understandable, positive and emphasize patient success stories, consistent with the information provided by the physician, and individualized to the patient’s stage and type of cervical cancer. A high unmet need exists for information on prognosis presented in this manner. Barriers to accessing these information needs represent a gap in care, which is not captured in quantitative measures of disease burden.

Our findings emphasize that supporting the patient’s search for information is a key element of patient-centered cancer care and communication. Physicians should encourage patients to seek information, to understand the information, and assess whether the information is credible. Providing a channel of constant communication with the patient helps create a trusting relationship and increased patient engagement which can lead to confidence and satisfaction with treatment decisions.

Specifically, physicians can direct patients to credible resources, even if this requires identifying or advocating for “go-to” websites where none currently exist, familiarizing themselves with local or institutional support groups, adopting useful communication platforms, and giving patients opportunities to ask questions.

6. Prior presentation

Results from the study were presented as a poster at the 2021 American Society of Clinical Oncology Annual Meeting and the 2022 Society of Gynecologic Oncology Annual Meeting.

7. Ethical conduct of research

The authors state that this study received exemption status from full or expedited ethical review by Pearl IRB, that they have followed the principles outlined in the Declaration of Helsinki for all human or experimental investigations, and informed consent was obtained electronically from the patients involved.

8. Note

R. Salani received funding from Merck Sharp & Dohme LLC, a subsidiary of Merck & Co., Inc., Rahway, NJ, USA, to provide research consulting services on this study. G.R. Wayser, E. Mulvihill, and K. Aguinaga are employees of Cerner Enviza, who received funding from Merck Sharp & Dohme LLC, a subsidiary of Merck & Co., Inc., Rahway, NJ, USA to conduct this study. E.A. Szamreta and V.S. Prabhu are employees of Merck Sharp & Dohme LLC, a subsidiary of Merck & Co., Inc., Rahway, NJ, USA, and stockholders of Merck & Co., Inc., Rahway, NJ, USA. Cerner Enviza also received funding from Merck Sharp & Dohme LLC, a subsidiary of Merck & Co., Inc., Rahway, NJ, USA, for writing assistance in the creation of this article.

Funding source

The study was funded by Merck Sharp & Dohme LLC, a subsidiary of Merck & Co., Inc., Rahway, NJ, USA.

CRediT authorship contribution statement

Elizabeth A. Szamreta: Conceptualization, Writing – review & editing, Supervision. Graceanne R. Wayser: Conceptualization, Methodology, Software, Formal analysis, Investigation, Data curation, Writing – review & editing, Project administration. Vimalanand S Prabhu: Conceptualization, Writing – review & editing, Supervision. Emily Mulvihill: Conceptualization, Methodology, Investigation, Writing – review & editing, Project administration. Katherine Aguinaga: Conceptualization, Writing – review & editing. Ritu Salani: Conceptualization, Writing – review & editing, Supervision.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.