Information needs for cancer screening and associated factors of information-seeking behaviour: a qualitative systematic review

Abstract

Background

At present, the participation rate in cancer screening is still not ideal, and the lack of screening information or misunderstanding of information is an important factor hindering cancer screening behaviour. Therefore, a systematic synthesis of information needs related to cancer screening is critical.

Methods

On July 23, 2024, we searched the Cochrane Library, MEDLINE (Ovid), Embase, EBSCO, PsycINFO, Scopus, ProQuest, PubMed, Web of Science, and CINAHL to collect qualitative or mixed-methods studies on information needs of cancer screening. We also searched for grey literature on OpenGrey and Google websites. Data were synthesised using Sandelowski and Barroso’s framework. A top-down approach was adopted to group and synthesise the encodes and then generate analytical themes.

Results

A total of 37 studies were included. The results of the analysis of cancer screening-related information needs content, cancer-specific information needs content, requirements and preferences for information, and associated factors of information-seeking behaviour were reported. Based on the event timeline, we summarised the information needs of the screening demand side into four themes. Their information needs focus on disease risk factors, signs and symptoms, the importance of screening, the benefits and harms of screening, the detailed screening process, and screening results and explanations. Regarding cancer-specific information needs content, we summarised the specific information needs of cervical, breast, colorectal, and lung cancer. By referring to relevant concepts in the Comprehensive Model of Information Seeking, we synthesised the requirements and preferences for information according to the themes of editorial tone, communication potential, recommended information channels, and recommended source place. The information-seeking behaviours of the screening demanders are mainly passive attention and active searching. The common factors leading to the passive attention of screening demanders are demographic factors and fear of cancer. The most common reason for them to actively search information is lack of information.

Conclusions

The list of information needs identified in this review can serve as a reference for health professionals and information service providers before carrying out screening-related work to help the cancer screening participants obtain valuable information.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-024-21096-2.

Background

Global cancer statistics for 2022 show that there are nearly 20 million new cancer cases and nearly 10 million cancer deaths. Lung cancer is currently the most commonly diagnosed cancer (12.4% of all cancers worldwide), followed by female breast cancer (11.6%), colorectal cancer (9.6%), and prostate cancer (7.3%). It is estimated that more than 35 million new cases of cancer will occur in 2050 [1]. At present, cancer has become a major public health problem threatening global health. Having cancer not only reduces an individual’s quality of life but is also associated with significant social and macroeconomic costs. A large amount of medical evidence shows that screening is an important measure for cancer secondary prevention and an effective way to improve the early diagnosis rate and reduce the case fatality rate of cancer [2]. To combat the increasing burden of cancer, the World Health Organization recommended that countries develop, implement, and monitor programs based on national epidemiological profiles to promote routine cancer screening to avoid delays in diagnosis and treatment [3].

Despite the abundance of programs or studies in countries to promote cancer screening, the current cancer screening participation rate is still not ideal. Lack of or misunderstanding of screening information is an important factor affecting cancer screening behaviour [4, 5]. Current studies on health education intervention were mostly made from the perspective of researchers, without actually understanding the information needs of the screening demanders [6, 7]. Relevant studies have shown that the screening service provider and demand side are in the dilemma of insufficient screening information and lack of reliable channels to obtain information [8]. Therefore, it is critical and challenging for healthcare organizations and health service providers to systematically assess the information needs of both the cancer screening providers and demanders.

At present, a large number of qualitative or mixed-methods studies have been conducted to collect data on both the screening providers and demanders through interviews and other methods. These studies delve into the information needs that cancer screening may face. However, different studies have different emphases and background. Qualitative comprehensive analysis is conducive to a more systematic and comprehensive synthesis of information needs related to cancer screening. Therefore, we comprehensively assess the information needs of the cancer screening providers and demanders by answering the following three research questions:

1. What information is needed by cancer screening providers and demanders in routine cancer screening?

2. What requirements and preferences do participants have for the information presented?

3. What are the participants’ information-seeking behaviours and associated factors?

This study aimed to identify, evaluate, and synthesise the major qualitative research available on the information needs associated with routine cancer screening. And generated a list of cancer screening-related information needs content, cancer-specific information needs content, requirements and preferences for information, and associated factors of information-seeking behaviour. These findings can be used as a reference for health professionals and information service providers to help cancer screening providers and demanders obtain valuable information and promote the smooth progress of cancer screening.

Methods

Search strategy

The comprehensive literature search was conducted in the Cochrane Library, MEDLINE (Ovid), Embase, EBSCO, Scopus, ProQuest, PubMed, Web of Science, and CINAHL. Information needs and information-seeking behaviour may involve human consciousness and psychological activities. In order to avoid missing relevant important literature, the PsycINFO database was included in the scope of our search. We also searched the grey literature through OpenGrey and Google. For the grey literature search, the first 10 pages of search results were used, as 10 pages are considered to be a good balance between search breadth and the time required for filtering [9]. To discover supplementary studies, a retrospective search was conducted for the references of the incorporated studies. The search period starts from the date of creation of each database until July 2024.

We select search terms based on MeSH vocabulary and researches relate to information needs(see Appendix 1 for a detailed search strategy). In order to more widely identify relevant studies, we did not restrict the term “screening” to “routine screening” but used such terms as “screening,” “detection,” “diagnosis,” and “test.” However, the literature screening process was limited to the relevant studies of routine screening.

Eligibility criteria and study selection

The inclusion criteria for the studies were (1) research on routine cancer screening, (2) relevant research describe the specific information needs of screening participants, rather than vague generalizations, and (3) empirical research using qualitative or mixed research methods. Studies were excluded for any one of the following: (1) reviews or patents or abstracts of meetings, (2) mixed-methods studies that do not yield any qualitative conclusions, (3)studies involving cancer screening populations and other types of participants failed to distinguish cancer screening populations from other types of participants, (4) duplicate or unavailable full-text literature.

Study selection

The researcher will search and download the relevant literature according to the specified search strategy. EndNote20.0 automatically identifies and removes duplicates and then manually finds and removes unidentified duplicates. Two evidence-based trained researchers independently screened the literature and cross-checked it. In case of any disagreement, a consensus can be reached through discussion or arbitration by a third party. In the literature screening process, the titles and abstracts were read for preliminary screening and inconsistent literature was excluded according to the exclusion criteria. After the initial screening, the full text of the literature was read and rescreened, and the irrelevant literature was excluded.

Quality appraisal

The quality of the included studies was appraised using the Critical Appraisals Skills Programme [10]. This 10-item checklist assesses methodological quality using questions with responses of “yes”, “no”, “not clear”, or “partially addressed”. Articles were considered to have acceptable quality if 60% of items answered “yes,” to have good quality if 70–90% of items answered “yes,” and to have high quality if 100% of items answered “yes.” [11].

Data extraction and synthesis

Two researchers used Microsoft Excel 2019 to extract data from 37 included qualitative research articles. According to the objectives and review questions of this study, we created a standardised document. Data for each study was extracted as follows: First author, publication year, country, data collection method, data analysis method, sampling method, qualitative research theoretical framework, the qualitative study sample size, participants, cancer type, and information seeking behavior. Information seeking behavior is grouped according to four categories specified in Wilson’s information behaviour model: active searching, passive searching, ongoing searching, and passive attention [12]. Active searching is defined as an individual actively seeking information. Passive searching is defined as “obtaining information that happens to be relevant to an individual”; ongoing searching refers to “active search that has established a basic framework of knowledge, but occasionally continues to search to update or extend the framework”; Passive attention refers to the fact that “information acquisition may occur without deliberate search.”

Data were synthesised using Sandelowski and Barroso’s framework [13]. The first step is to extract the findings of each study. Two researchers imported the included literature into NVivo18.0 plus for analysis. First-order (i.e., participants’ information needs for routine cancer screening) and second-order structures (i.e., authors’ interpretation, statements, assumptions, and ideas) were identified and labelled in the literature [14]. The first-order structure was extracted from the results section of the selected papers. The second-order structure was usually extracted from the discussion and conclusion sections of the selected paper. The researchers then coded the first-order and second-order content. In the second step, we use a top-down method to group and synthesise the codes. For cancer screening-related information needs content, we used event timelines to divide the themes. The codes were divided into corresponding themes, and then new categories (i.e., subthemes) were generated by categorising the codes that convey the same concepts. For requirements and preferences for information and associated factors of information-seeking behaviour, we refer to relevant concepts in the Comprehensive Model of information-seeking (CMIS) [15] to organise and synthesise the results. CMIS model assumes that antecedent factors affect information carrier factors and thus affect information-seeking behaviour. Antecedent factors include demographics, experience, salience, and belief. Demographics refers to general demographic variables represented by education, income, etc. Experience refers to people experiencing a specific illness either through personal experience by having the symptoms of that illness or through their social environment, namely, knowing family members or close friends who have the illness. Salience, in this context, is defined as “the personal significance of health information to an individual [that] is related to the degree of perceived health threat an individual feels”. Beliefs represent how effectively advocated medical procedures and preventive behaviours address health threats. If a person believes that screening is effective in detecting cancer early and reducing mortality, that person is more likely to seek out information about screening. Information channels are usually divided into interpersonal channels, traditional media channels, and Internet-related channels [15]. We use this classification because it has been proven to be useful in examining health information-seeking behaviour and can help us better understand and segment the codes about information channels. Channel characteristics include two characteristics: editorial tone and communication potential [15]. Editorial tone concerns information channel users’ perception of the credibility and intention of an information channel. Communication potential refers to how users of an information channel consider the presentation style and the comprehensibility of the information content.

Before and during the data analysis, we had two group discussions, which focused on the determination of coding consistency and the merging of conceptual categories (themes and subthemes). The research members have extensive experience in cancer clinical research, and over the course of the group discussion, we reflected on our own positions and perspectives to reduce bias.

Results

We identified a total of 5616 papers in our preliminary search. After duplicates were removed, we screened 3574 articles and eventually included 37 studies in this review (Fig. 1). The Quality Appraisal results of studies are shown in Appendix 2. A total of 26 studies were rated as high quality. The remaining 11 studies were rated as good quality because they did not clearly describe the research objectives, the data analysis, or the findings of the research, and the recruitment strategy partially appropriate to the aims of the research, the relationship between researcher and participants not been adequately considered. Therefore, no study was excluded from this appraisal.

Fig. 1.

PRISMA Flow chart of initial searches and inclusion

Study characteristics

These studies have been conducted in the United States (n = 7), Canada (n = 6), United Kingdom (n = 4), Australia (n = 4), South Africa (n = 2), Sweden (n = 2), Argentina (n = 1), Bolivia (n = 1), China (n = 1), Denmark (n = 2), Germany (n = 1), Iran (n = 1), Korea (n = 1), Netherlands (n = 1), Norway (n = 1), Singapore (n = 1), New Zealand (n = 1). The types of cancer studied included cervical cancer (n = 15), breast cancer (n = 11), colorectal cancer (n = 10), lung cancer (n = 4), thyroid cancer (n = 1), prostate cancer (n = 1). The qualitative data collection methods used in these studies were face-to-face focus group interview (FGI), face-to-face or telephone or online Semi-structured individual interviews, face-to-face in-depth interviews, and list information requirements in written form. Focus group interviews (19) and Semi-structured individual interviews (12) are the most widely used. Thematic analysis (17), grounded theory (5), and content analysis (4) were mainly used for data analysis. See Appendix 3 for details.

Cancer screening-related information needs content

The operation of screening work cannot be separated from the joint participation of screening service providers and demanders. Both the screening providers and demanders have their own information needs. Therefore, this part will describe the information needs of each party from the perspective of the screening service providers and demanders. See Table 1 for details.

Table 1.

Cancer screening-related information needs content

Themes	Subthemes	Concepts	No. of Studies	Examples of quotations	References
Screening service provide side
Supporting information	Statistical and clinical evidence of screening	Statistical and clinical evidence of screening including evidence on screening risks and benefits, evidence on screening content and survival, data on test sensitivity and specificity, and accessible statistical information about screening	1	"Other areas of information …... were evidence of the risks and benefits of screening, technical data about the sensitivity and specificity of FOB testing and evidence of detection and survival rates" [16]	[16]
	Description of screening process	A clear and uniform description of the screening process	2	"Front desk staff indicated that staff training would be essential for them to understand all steps in a screening program so they could, in turn, describe them to patients. " [17]	[16, 17]
Screening demand side
Establish initial cognition	Information on cancer in general	Basic information related to cancer, including disease definition, disease course, disease cause, disease transmission mode and progression (cervical cancer only), disease risk factors, symptoms and signs, disease prevention method, disease impact and prognosis, statistics (cancer prevalence, cancer survival rate)	23	"Participants suggested that educational materials should provide basic information on breast and cervical cancer…..." [18]	[8, 17–38]
	Information on screening in general	Basic information related to screening, including the purpose and importance of screening, definitions of specific screening modalities, eligibility criteria for screening, a glossary of screening-related terms, statistical data (proportion of people who complete screening, rate of abnormalities detected through screening, rate of false-positive test results)	24	"Desired information prior to screening included: eligibility criteria for LCS…..." [39]	[8, 17–22, 24–27, 30, 35–46]
Auxiliary screening decision	Screening method	The method to detect whether you have cancer, including recommended screening methods, alternatives, the differences, advantages and disadvantages of different screening methods, accuracy of screening, the choice of screening methods and reasons, whether the specific screening method is invasive, and whether it will cause discomfort or pain	20	"What is the best imaging option for detection of breast cancer? What are the advantages of mammography? " [19]	[8, 19, 23, 25–27, 30, 32–34, 36, 38, 41, 43, 45–50]
	Benefits or harms of screening	Benefits or harms associated with screening, including benefits of screening, harms/risks of screening, risks of not screening, and potential harms of over-screening	20	"Most participants preferred a clear recommendation from the health authorities about colorectal cancer screening, including a list of benefits and harms." [29]	[16, 17, 19, 20, 22, 23, 26, 28–30, 32, 34, 35, 38–41, 44, 45, 50]
	Economic burden	Information on the cost of screening, including the cost of screening, medical insurance, and free screening policies	8	"Messages should also include statements that the LDCT scan is covered by most health insurance companies &/or provide information about screening costs." [40]	[21, 24, 25, 27, 32, 38–40]
Screening process	Screening procedure	Information about the procedures involved in the screening process, including the time, frequency, time interval, and location of the screening, the detailed procedures for routine screening in the hospital or self-testing at home, the preparations required for screening, potential emergencies during screening, and response strategies	29	"the respondents indicated that an explanation about the screening process would also be useful. " [23]	[8, 16–19, 21–27, 29, 31–34, 36–39, 41, 42, 44, 45, 47–49, 51]
	Screening service resources	Service information to facilitate the smooth implementation of screening, including screening reminder information, access to self-test kits, reliable and accessible screening service information resources such as screening appointment procedures, translation services, screening-related programs or policies, transportation options to screening sites	16	"Farmworker CWs expressed a lack of information about their own health and health services available to them related to cancer" [25]	[8, 18, 20–22, 24–26, 33, 36–38, 41, 45, 48, 51]
Information on health outcomes after screening	Screening outcome	Information on screening results and their significance, including the time to obtain screening results, timely screening result information, reconfirmation of positive results, meaning of screening results and detailed interpretation	19	"whether abnormal Pap smear result will lead to cervical cancer or whatever is associated with it, that kind of information is what should be getting across." [20]	[8, 16, 18, 20, 21, 27, 28, 31, 34, 35, 38, 39, 44, 45, 47–51]
	Follow-up examination/treatment	Follow-up arrangements and implications for different screening results, including specific follow-up tests, follow-up or treatment information, and the effects of treatment on health, quality of life, and fertility	9	"…... especially when informing them of the mammogram results and the subsequent steps in the process." [48]	[17, 19, 30, 31, 34–36, 38, 48]

Screening service provider side

Only two articles reported the screening service providers’ information needs [16, 17]. It is mainly to provide supporting information for the smooth implementation of their work, including a detailed description of the screening process and the statistical and clinical evidence related to screening (including evidence of screening risks and benefits, evidence of screening content and survival rate, data of sensitivity to detection, and accessible statistical information). Screening service providers are an important source of information for the screening demanders. In one study [16], general practitioners emphasised that before promoting screening to the population, they must first address their own information needs so that they can provide high-quality information to potential screening participants.

Screening demand side

All the articles included the information needs of screening demanders. We used the event timeline to interpret and synthesise the encoded content. We described the information needs of screening demanders in the four stages of establishing initial cognition, making screening decisions, participating in the screening process, and obtaining and coping with post-screening health outcomes.

Theme 1 establish initial cognition

Information on establishing initial cognition refers to providing basic information to understand the disease and screening. Several studies show that screening demanders indicated that they did not know or understand the diseases to be screened, so it is necessary to establish a preliminary understanding of the diseases and screening. Two subthemes were synthesised under this theme: information on cancer and information on screening in general. Information on cancer in general refers to basic information related to cancer, including disease definition, disease course, disease causes, disease transmission mode and progression(cervical cancer only), disease risk factors, symptoms and signs, disease prevention method, disease impact and prognosis, statistics (cancer prevalence, cancer survival rate) [8, 17–38]. On this basis, the participants, as well as the authors of the articles, indicated the Information needs on screening in general, which included the purpose and importance of screening, definitions of specific screening modalities, eligibility criteria for screening, a glossary of screening-related terms, statistical data (proportion of people who complete screening, rate of abnormalities detected through screening, rate of false-positive test results) [8, 17–22, 24–27, 30, 35–46]. In the information on cancer in general subtheme, screening demanders focused on disease risk factors (n = 15) [8, 19, 20, 22–25, 27, 28, 32–37], symptoms and signs (n = 12) [19–24, 28, 29, 31, 32, 35, 36]. In the information on screening in general, the information needs are mainly focused on the purpose and importance of screening (n = 15) [18, 20–22, 25–27, 37, 40–46]. This kind of information allows them to more intuitively measure the relevance of cancer to their own health, such as whether they have these risk factors, whether they have these symptoms and the importance of screening for their own health.

Theme 2 auxiliary screening decision

Information of auxiliary screening decision refers to the provision of relevant information to assist screening demanders in making decisions when they are considering whether to participate in screening. Within this theme, there are three subthemes: screening method, benefits or harms of screening, and economic burden. Screening method refers to the method to detect whether you have cancer, including recommended screening methods, alternatives, the differences, advantages and disadvantages of different screening methods, the accuracy of screening, the choice of screening methods and reasons, whether the specific screening method is invasive, and whether it will cause discomfort or pain [8, 19, 23, 25–27, 30, 32–34, 36, 38, 41, 43, 45–50]. Benefits or harms of screening subthemes include benefits of screening, harms/risks of screening, risks of not screening, and potential harms of over-screening [16, 17, 19, 20, 22, 23, 26, 28–30, 32, 34, 35, 38–41, 44, 45, 50]. Economic burden refers to information on the cost of screening, including the cost of screening, medical insurance, and free screening policies [21, 24, 25, 27, 32, 38–40]. In the screening method subtheme, recommended screening methods (n = 8) [8, 16, 18, 33, 34, 36, 41, 48] and the differences, advantages and disadvantages of different screening methods (n = 6) [19, 27, 32, 33, 47, 49] are the information that screening demanders focus on. In the benefits or harms of screening subtheme, the information demanders are mainly focused on the benefits of screening (n = 14) [17, 19, 23, 28–30, 32, 34, 38–41, 44, 45] and harms/risks of screening (n = 11) [16, 17, 19, 28–30, 32, 35, 38–40], and these are also the information that the screening demanders most want to know among the auxiliary screening decision theme. It has been reported that most participants want to have access to a list of the pros and cons of screening from a healthcare organisation [29], which is objective and comprehensive information that can help them make a more informed choice based on their own reality rather than a blind choice. The financial burden is one of the barriers for screening demanders to participate in screening. So screening demanders want relevant information about screening insurance and reimbursement to minimise the burden on their lives [21, 24, 25, 27, 32, 38–40].

Theme 3 screening process

Information of the screening process refers to the information involved when screening demanders participate in screening activities. We synthesised two subthemes under this theme: screening procedure and screening service resources. In the screening procedure, when screening demanders decide to participate in screening, they need to acquire the time, frequency, time interval, and location of the screening, the detailed procedures for routine screening in the hospital or self-testing at home, the preparations required for screening, and potential emergencies during screening and response strategies [8, 16–19, 21–27, 29, 31–34, 36–39, 41, 42, 44, 45, 47–49, 51]. It is worth noting that screening demanders indicated that they may receive the self-test kits without knowing how to use them and that due to convenience, cultural background factors, and other reasons, screening demanders also want to be able to conduct self-tests at home [20, 43], so they would like to know more information about self-testing. Screening service resources refer to the service information to facilitate the smooth implementation of screening, including screening reminder information, access to self-test kits, reliable and accessible screening service information resources such as screening appointment procedures, translation services, screening-related programs or policies, and transportation options to screening sites [8, 18, 20–22, 24–26, 33, 36–38, 41, 45, 48, 51]. In terms of screening procedure subtheme, the information needs mainly focus on the detailed procedures for routine screening in the hospital or self-testing at home (n = 25) [8, 16–19, 22–27, 29, 31–33, 36–39, 42, 44, 45, 47–49], and the time and frequency of the screening (n = 10) [18, 19, 21, 25, 34, 36, 37, 39, 41, 51]. This information is helpful to help the screening demanders clearly understand the whole process and arrangement of screening, and lay the foundation for the smooth participation of screeners in screening. In the screening service resources subtheme, screening reminder information (n = 8) [18, 20, 22, 24, 26, 33, 41, 45] and reliable and accessible screening service information resources (n = 7) [18, 21, 25, 36–38, 51] are the more desirable information for screening demanders. This information can alert people and help them participate better in screening activities.

Theme 4 information on health outcomes after screening

Information on health outcomes after screening theme contains two sub-themes: screening outcome and follow-up examination/treatment. Screening outcomes include the time to obtain screening results, timely screening result information, reconfirmation of positive results, meaning of screening results and detailed interpretation [8, 16, 18, 20, 21, 27, 28, 31, 34, 35, 38, 39, 44, 45, 47–51]. After receiving information on screening outcomes, the information on follow-up examination/treatment includes specific follow-up tests, follow-up or treatment information, and the effects of treatment on health, quality of life, and fertility [17, 19, 30, 31, 34–36, 38, 48]. The information needs on this theme mainly focuse on screening result information (n = 11) [18, 21, 27, 28, 34, 35, 44, 47–49, 51], and the meaning of screening results and detailed interpretation (n = 12) [8, 20, 21, 31, 34, 35, 39, 44, 45, 47, 48, 50]. Screening demanders expressed the hope that both positive and negative results could be provided in an appropriate and timely manner [47], and the results of several studies emphasised the importance of providing screening results promptly [21, 27, 28, 44, 47, 48, 51].

Cancer-specific information needs content

This part mainly presents the specific information needs of different cancers and aims to provide a reference for formulating information content required in specific cancer screening situations. We divided the themes according to the cancer category, including four themes: cervical cancer, breast cancer, colorectal cancer, and lung cancer. Maybe due to limited research available, thyroid cancer and prostate cancer do not have specific information needs. According to the specific information needs of each theme category, we generated the corresponding subthemes by summarising the encodes that conveys the same concept. See Table 2 for details.

Table 2.

Cancer-specific information needs content

Themes	Subthemes	Concepts	No. of Studies	Examples of quotations	References
Cervical cancer [1, 3, 4, 7, 11, 14, 19, 26–29, 40–42, 47]	Mode of disease transmission	The definition of HPV, the relationship between HPV infection and cervical cancer, the relationship between cancer and sexual activity, the moment and duration of infection, and the latency time	4	"they would like to receive information about the way the virus is transmitted""one unperceived information need was related to the moment and duration of the infection, incubation time and whether women should link infection to the sexual activity of their current partner." [35]	[8, 21, 26, 35]
	Effects and prognosis of disease	Effects on fertility and sexual partners and risk of re-infection	2	"potential implications for their partners and risk of re-infection. A few younger women requested information on whether HPV could affect fertility." [34]	[34, 35]
Breast cancer [2, 8, 10, 12, 14, 15, 19, 32, 42, 48, 51]	Effects and explanations of breast density	The effect of breast density on test results, and the interpretation of dense breasts in test results reporting	1	"…...the sensitivity of mammography in finding cancer, and …... have a higher level of uncertainty in women with dense breasts." [50]	[50]
	The effects of treatment on the individual	Effect of mastectomy on breast appearance and affected limb	2	"Is complete removal of the breast needed for breast cancer cure? Is breast reconstruction possible at the time of removing the breast? Does the breast get distorted and ugly after breast surgery for cancer? Does the arm always swell after breast cancer surgery, and is it lifelong? " [19]	[19, 25]
Colorectal cancer [5, 6, 8, 13, 14, 19–21, 25, 31]	Screening preparation	The preparation required by the screener during the screening process	5	"Tell me what you’re going to do, tell me what I have to do to prepare, tell me do I have to be there early, tell me the fact that I need somebody to be there with me, tell me that ‘wear comfortable clothes’ and ‘don’t eat for X amount of hours.’" [49]	[23, 33, 41, 49, 51]
Lung cancer [9, 24, 30, 49]	Benefits of quitting smoking	The effect of smoking cessation on reducing the incidence of lung cancer	1	"The information that I'm focusing on right now is where it says quitting smoking at any age can lower the risk of lung cancer. " [38]	[38]

Theme 1 cervical cancer

The specific information needs of cervical cancer include the mode of disease transmission and the effects and prognosis of the disease. Because viral infection is one of the causes of cervical cancer, people want to understand how the disease is transmitted. Specific information needs on mode of cervical cancer transmission includes the definition of HPV, the relationship between HPV infection and cervical cancer, the relationship between cancer and sexual activity, the moment and duration of infection, and the latency time [8, 21, 26, 35]. In addition, because the womb is linked to fertility and cervical cancer can be transmitted sexually, people also want information about the effects and prognosis of the disease, Specifically, effects on fertility, sexual partners, and risk of re-infection [34, 35].

Theme 2 breast cancer

The specific information needs on breast cancer includes two sub-themes: effects and explanations of breast density and the effects of treatment on the individual. Breast density will have a certain impact on mammography. Hence, breast cancer screeners pay more attention to whether the diagnostic criteria of different breast densities are the same [48]. At the same time, they expressed the hope that if they had dense breasts, the doctor could write the meaning and impact of dense breasts in the test result report so that they could better understand the test results [50]. In addition, since the surgical site of breast cancer has a certain impact on female body image and limb activity, people pay more attention to the information on the effect of treatment on individuals, mainly including the impact of mastectomy on breast appearance and the rehabilitation of the affected limb [19, 25].

Theme 3 colorectal cancer

Colorectal cancer screening requires bowel preparation, but some participants indicated that they do not know how to prepare for screening. Therefore, colorectal cancer screeners are more interested in information about the preparation required for screening [23, 33, 41, 49, 51] to help them participate more effectively in screening activities.

Theme 4 lung cancer

Smoking is closely related to the occurrence of lung cancer. Therefore, screening demanders suggest that screening service providers provide relevant information on the effect of smoking cessation on the prevention of lung cancer so as to encourage people to quit smoking, and prevent the occurrence of lung cancer to a greater extent [38].

Requirements and preferences for information

Considering the efficiency of information transmission, we demonstrate the information requirements and preferences from the perspective of information needers. When analysing the relevant content, we divide the theme by referring to the pertinent concepts of the theoretical model of CMIS [15]. The themes in this section include editorial tone, communication potential, recommended information channels, and recommended source places. Then, we group the relevant codes into the corresponding theme, and cluster the codes that convey the same concept to generate subthemes. The details are shown in Table 3.

Table 3.

Requirements and preferences for information

Themes	Subthemes	Concepts	No. of Studies	Examples of quotations	References
Editorial tone	High quality information	To ensure the reliability of information and put forward the information quality requirements, including unified, comprehensive, reliable	14	"the women could imagine that nurses as healthcare professionals are qualified to communicate and convey healthcare information in an objective and professional manner." [26]	[16, 17, 21, 26, 28, 30–33, 36, 39, 42, 43, 45]
	Positive information	Information demanders expect positive information, including positive information, effective information for screening rather than intimidating information, receiving "good news" first and "bad news" later.	3	"participants preferred positive tone and messaging that emphasized benefits of quitting smoking and obtaining LCS." [38]	[34, 38, 40]
	Assessment of communication context	The need to consider the meaning of information content and cultural background of demanders when transmitting information, including caution (to avoid panic and misunderstanding), cultural adaptability	8	"Caution is required when delivering information about HPV and the meaning of results…..." [47]"Participants felt IVR messages needed to be culturally tailored ." [41]	[18, 22, 25, 35–37, 41, 47]
Communication potential	Writing	The information writing requirements suggested by the information demanders, including language adaptability (suitable for the language of the screeners), information content (short, detailed, detailed for the first time and brief for the subsequent), description in stages, clear and clear, easy to understand, direct and engaging, combining with the real situation, highlighting key information, and quick reference elements	22	"everal participants indicated preference for having physicians who spoke their language and were from their own ethnic groups." [29]	[16, 18, 22–25, 29, 31, 32, 34, 36–41, 43, 45, 46, 48, 49, 51]
	Visuals	The form of information presentation recommended by the information demanders, Including video, image, diagram, flowchart, audio	12	"the use of graphics and charts were cited as useful inclusions…..." [22]	[8, 16, 22–24, 29, 34, 36, 38, 39, 42, 43]
Recommended information channels	Interpersonal channels	Access to information through health-related Interpersonal interactions, including healthcare professionals/organizations, face-to-face communication, health promotion activities	25	"but if I get that reminder from your GP to say that your Pap smear is due I think I will get it done." [20]	[18–27, 29, 30, 32, 36–41, 45–47, 49–51]
	Traditional social channels	Access to information through traditional way, including telephone, text messages, letters, and traditional media such as television, radio, printed materials (knowledge books/leaflets/newspapers), etc	21	"The use of media (television, radio, social media and applications) were mentioned as the preferred way to receive information and also seen as an effective method to inform others." [23]	[18, 19, 22–27, 29, 30, 32, 34, 36, 38, 40–44, 50, 51]
	Internet-related channels	Access information through online Internet tools, including email, websites, patient portal	7	"the women expressed that an instructional video on the Internet could be a complement to the written instructions." [8]	[8, 22, 29, 34, 40, 42, 50]
Recommended source place	Public place	College campuses, communities, churches, libraries, waiting places, public transportation, public toilets, places of consumption	7	"Public facilities were seen as important and included all of cinemas, pubs, pools, gyms, churches, libraries, shopping centres, workplaces, schools and other community centres (eg, Men’s Sheds, Country Women’s Association, Rotary Clubs)." [24]	[18, 24, 27, 39, 42, 43, 46]
	Healthcare institution	Outpatient clinics, doctors' offices, pharmacies, waiting rooms, examination units, community health care centers	8	"Others suggested providing information at the GP’s office, for instance in the form of brochures….." [22]	[18, 22, 32, 34, 38, 40, 46, 50]

Theme 1 editorial tone

Editorial tone relates to credibility and trustworthiness. We synthesised the codes under this theme into three subthemes: high-quality information, positive information, and assessment of communication context. Screening demanders reported that sometimes they received inconsistent or even contradictory information from different sources (guidelines, healthcare providers, websites, etc.). Therefore, high-quality information refers to the quality requirements for information to ensure its reliability, including unified, comprehensive, and reliable [16, 17, 21, 26, 28, 30–33, 36, 39, 42, 43, 45]. We think editorial tone contains certain emotional preferences. Positive information refers to information demanders expecting the information they received to be positive, including positive information, effective information for screening rather than intimidating information, and receiving “good news” first and “bad news” later [34, 38, 40]. Assessment of communication context refers to the need to consider the meaning of information content and the cultural background of demanders when transmitting information, including caution (to avoid panic and misunderstanding) and cultural adaptability [18, 22, 25, 35–37, 41, 47]. It is worth noting that the results of eight studies [18, 22, 25, 35–37, 41, 47] show that the screening demanders expect the information they receive to consider cultural adaptability so that people can feel comfortable when obtaining the information.

Theme 2 communication potential

Communication potential relates to the quality of writing/visuals. So, we used writing and visuals as subthemes. Writing refers to the information writing requirements suggested by the information demanders, including language adaptability (suitable for the language of the screeners), information content (short, detailed, detailed for the first time and brief for the subsequent), description in stages, clear and precise, easy to understand, direct and engaging, combining with the actual situation, highlighting critical information, and quick reference elements [16, 18, 22–25, 29, 31, 32, 34, 36–41, 43, 45, 46, 48, 49, 51]. The findings of 10 articles [16, 18, 22–24, 36, 37, 41, 43, 46] show that screening demanders want information to be delivered in the same language as themselves so that they can directly read and communicate information about screening. Visuals refer to the form of information presentation recommended by the information demanders, including video, image, diagram, flowchart, and audio [8, 16, 22–24, 29, 34, 36, 38, 39, 42, 43]. In the visuals subtheme, people prefer to communicate information in the form of video (n = 7) [8, 34, 36, 37, 39, 42, 43] because video can help people better grasp, understand, and remember information.

Theme 3 recommended information channels

Information channels are usually divided into interpersonal channels, traditional media channels and Internet-related channels [15]. These three categories were also used as subthemes in this study. Interpersonal channels refer to information access through health-related interactions, including healthcare professionals/organisations, face-to-face communication, and health promotion activities [18–27, 29, 30, 32, 36–41, 45–47, 49–51]. In the analysis process, we adjusted the traditional media channels subtheme to the traditional social channels subtheme according to the encoded content. Traditional social channels including telephone, text messages, letters, and traditional media such as television, radio, printed materials (knowledge books, leaflets, newspapers), etc [18, 19, 22–27, 29, 30, 32, 34, 36, 38, 40–44, 50, 51]. Internet-related channels refer to accessing information through online Internet tools, including email, websites, and patient portals [8, 22, 29, 34, 40, 42, 50]. In this theme, healthcare professionals (n = 22) [18–22, 24–26, 29, 30, 32, 36–41, 45, 47, 49–51], health promotion activities (n = 13) [18, 19, 21, 23, 24, 26, 27, 32, 36, 37, 45–47], and traditional media (n = 13) [18, 19, 22, 23, 26, 27, 29, 34, 36, 40, 43, 44, 50] are the most frequently recommended and preferred information acquisition channels. Studies have shown that people are more likely to obtain information from healthcare professionals, believing that information received online or from other sources may be incorrect or misleading, while healthcare professionals are able to provide more professional and objective information [26]. The information dissemination methods of health promotion activities and traditional media have vast audiences and are easy to contact, which can promote the rapid and effective dissemination of information. Therefore, people also recommend the dissemination of information through these two channels.

Theme 4 recommended source place

Through the summary analysis of the coding content, we synthesised the recommended source place into two subthemes: public place and healthcare institution. Public places include college campuses, communities, churches, libraries, waiting places, public transportation, public toilets, and places of consumption [18, 24, 27, 39, 42, 43, 46]. Publicising screening-related content in public places can promote the dissemination of information on a large scale and quickly, thus encouraging more people to pay attention to screening-related information. Healthcare institutions include Outpatient clinics, doctors’ offices, pharmacies, waiting rooms, examination units, and community healthcare centres [18, 22, 32, 34, 38, 40, 46, 50]. Participants also indicated that healthcare institution was their preferred and trusted source of information.

Associated factors of information-seeking behavior

The results show that the information-searching behaviour of the screening demanders can be divided into passive attention and active searching. Among the articles included in the analysis, 11 articles showed that the information search behaviour of the screening demanders was passive attention, 12 were active searching, 4 had both passive attention and active searching behaviour, and 10 studies did not indicate their information-seeking behaviour. Therefore, we used passive attention and active searching as the themes. We refer to the relevant concepts of antecedent factors in the CMIS model [15]. Consider demographics, experience, salience, and belief as subthemes to generalise and organise the coding content. The details are shown in Table 4.

Table 4.

Associated factors of information-seeking behavior

Themes	Subthemes	Concepts	No. of Studies	Examples of quotations	References
Passive attention	Demographics	Demographically relevant variables including language barriers, cultural factors, low educational attainment, economic stress, and lower social status	5	"A lot of people are afraid to ask for help … Lately they have been careful signing up for government services because they hear a lot of things on the street … because of their legal status …" [25]	[20, 25, 32, 37, 46]
	Experience	Personal or other cancer-related experiences, including fear of cancer	4	"they said they were scared to ask the nurses any questions because of the negative response they would receive." [27]	[25, 27, 44, 45]
	Lack of salience	Perceived low significance of health information to individuals, including lack of motivation to obtain information about screening, and the perception that screening is not important to them	3	"I never do any reading, like research on breast cancer. Not necessary at the moment. If I really need to, I will do the research." [32]	[23, 26, 32]
	Lack of belief	Lack of belief that medical and preventive behaviors can effectively cope with health threats, including lack of awareness of screening and not seeing a doctor until there is a serious problem	2	"the lack of awareness about screening, and waiting to see a doctor until there is something acutely wrong." [45]	[25, 45]
Active searching	Experience	Personal or other cancer-related experiences, including having symptoms, getting positive screening results	4	"This was evidenced further by another woman, who identified women in her community who only actively seek breast screening or healthcare when symptoms arise" [46]	[8, 32, 46, 47]
	High salience	Health information is of great significance to individuals, and this is related to the level of perceived health threats, including the presence of cancer risk or concerns about their own health	3	"because back home it’s [only] when you’re sick you go [to seek health care]" [33]	[33, 38, 50]
	Lack of information	The lack of relevant information leads to active information seeking, including obtaining more information to assist in making screening decisions, obtaining information about the screening process and follow-up arrangements, choosing to seek information on their own because they cannot obtain effective information from medical personnel, consulting medical personnel to obtain professional knowledge, and obtaining personalized information	7	"a few women did feel sufficiently informed to make a decision about participation after having searched online for more personally relevant information about cervical cancer, CCS, and the risk of opting out." [26]	[22, 26, 27, 31, 35, 42, 49]
	Clarification of information	There is misunderstanding or uncertainty about the information that leads to the information-searching behavior, including not understanding the information, not understanding the medical terminology, clarifying the connotation of the screening results, verifying the authenticity and credibility of the information, and confirming the accuracy of the self-test	5	"Nearly all women searched online for information immediately after reading their letter.Often this was due to uncertainty about what information to trust and through reading conflicting information." [34]	[8, 34, 39, 42, 49]
	Anxiety caused by waiting	Feelings of anxiety caused by long waits, includeing not getting screening results in a timely manner, and long waits for screening	2	"Others talked about feeling worried about their results when they had been waiting for them, for example, a woman had to go back to the clinic to ask about her results." [47]	[47, 48]

Theme 1 passive attention

Passive attention refers to information acquisition that may take place without deliberate search. The factors that lead to passive attention in the information-seeking behaviour of screening demanders include demographics, experience, lack of salience and lack of belief. Demographic factors include language barriers, cultural factors(cancer is considered a negative event and information about female reproductive organs is forbidden), low educational attainment, economic stress, and lower social status(Immigration status) [20, 25, 32, 37, 46]. Experience refers to personal or other cancer-related experiences. Related factors under this subtheme include fear of cancer (fear/avoidance of adverse outcomes, fear of cancer and screening) [25, 27, 44, 45]. Lack of salience refers to the perceived low significance of health information to individuals. Under this subtheme, factors associated with passive attention behaviour include a lack of motivation to obtain information about screening and a belief that screening was not vital to them [23, 26, 32]. Lack of belief refers to a lack of faith that medical and preventive behaviours can effectively cope with health threats, including a lack of awareness of screening and not seeing a doctor until there is a severe problem [25, 45]. Demographic factors (n = 5) [20, 25, 32, 37, 46] and fear of cancer (n = 4) [25, 27, 44, 45] are common reasons that lead to the passive attention of screening demanders to information.

Theme 2 active searching

Through the analysis of the encoded content under this theme, it was found that there are no demographics and belief-related factors, so these two subthemes were deleted. In order to better match the coding content, we added three subthemes through continuous comparative analysis and induction: lack of information, clarification of information, and anxiety caused by waiting. The subthemes that are finally determined under this theme include experience, high salience, lack of information, clarification of information, and anxiety caused by waiting. Experience subthemes include symptoms and positive screening results [8, 32, 46, 47]. High salience refers to Health information that is of great significance to individuals, and this is related to the level of perceived health threats, including the presence of cancer risk or concerns about their own health [33, 38, 50]. Lack of information, including obtaining more information to assist in making screening decisions, obtaining information about the screening process and follow-up arrangements, choosing to seek information on their own because they cannot obtain effective information from medical personnel, consulting medical professionals to obtain professional knowledge, and obtaining personalised information [22, 26, 27, 31, 35, 42, 49]. Clarification of information refers to there is misunderstanding or uncertainty about the information that leads to the information-searching behaviour, including not understanding the information, not understanding the medical terminology, clarifying the connotation of the screening results, verifying the authenticity and credibility of the information, and confirming the accuracy of the self-test [8, 34, 39, 42, 49]. In addition, under the influence of the anxiety of waiting for a long time, people will choose to seek out the needed information actively, and this subtheme includes not getting screening results promptly and long waits for screening [47, 48]. Lack of information (n = 7) [22, 26, 27, 31, 35, 42, 49] was the most common reason for screening demanders to search for information actively.

Discussion

Screening is an effective means to improve the early diagnosis and treatment rate of cancer. Still, the lack of relevant information about screening is a major obstacle for people to participate in screening. This study also found that the current screening demanders have a limited understanding of relevant information about screening. Therefore, bridging the cognitive-behavioural gap is critical to promoting individuals’ active participation in screening [5]. However, most current studies on health education do not consider the information needs from the perspective of information needers [19], which makes it difficult to meet people’s real needs. For this reason, this study aims to explore the actual information needs of both the screening service provider side and the demand side by analysing published qualitative research on information needs related to cancer screening. The main advantage of this study is that it clearly presents the cancer screening information needs content, cancer-specific information needs content, requirements and preferences for information, and associated factors of information-seeking behaviour.

In terms of the content of information demand, the demand of screening service providers mainly focuses on the information transmitted during the communication with screening demanders, which can support screening service providers in providing reliable and unified information for screening demanders. Studies have shown that understandable and actionable information from health workers is an important factor in promoting the active participation of the population in medical activities [52], so it is necessary to provide adequate information for screening service providers to help them carry out screening smoothly. In terms of the information needs of screening demanders, we summarised the information needs of cancer screening demanders at different stages in establishing initial cognition, making screening decisions, participating in the screening process, and obtaining and coping with post-screening health outcomes by taking the event timeline as the axis [53]. In the follow-up cancer screening health promotion activities and daily screening work, we can refer to the list of information needs at different stages summarised in this review and provide targeted information for screening demanders according to their stages and needs. Research results show that at each stage, there are several pieces of information that people pay more attention to. A lack of these key information needs may be a hindering factor that prevents people from understanding and participating in screening and coping with screening outcomes [54]. Therefore, in the process of promoting screening knowledge and carrying out screening-related work, we can focus on providing these aspects of information for screening reminders to help them better understand and participate in screening activities. In addition, we also found that although the screening information needs of different cancers are generally the same, different cancers have their own unique information needs, and different groups (different genders, different education levels, different economic status, whether they have participated in relevant screening, etc.) have different attention points on information needs [55]. Therefore, before conducting health education, it is necessary to understand the information preferences of screening service providers and the demand side so that they can provide them with personalised information tailored to their needs.

Before the information is transmitted, we need to process the information according to the preferences of the information recipient to ensure that the information can be more effectively accepted and digested. We interpret people’s information requirements and preferences from the four aspects of Editorial Tone, Communication Potential, Recommended Information Channels, and Recommended Source Place. The results show that people want to obtain standardised, comprehensive and reliable high-quality information, which is consistent with the review results of Connelly et al. [56]. Another review showed that Inconsistent information (different clinicians providing different information) made patients and their family caregivers confused and frustrated and could increase feelings of helplessness [54]. In the future, it is necessary to review the information sources strictly to standardise and uniformly screen the relevant information content. It is worth noting that people hope that information providers can take their cultural background into account when conveying information related to screening so that they can feel respected in the screening process and obtain effective information suitable for their cultural background [25], which is consistent with the review results of Wang et al. [57]. Due to the language barrier, many people are obstructed from receiving information, which leads to missing screening [56]. Therefore, it is necessary to adjust the language of information presentation according to the language environment of the screening demanders or arrange corresponding translators to provide translation services for the population [30]. In the visuals of information presentation, people tend to present information in visual ways such as videos and images. In the future, corresponding videos and images can be made according to the information needs summarised in this review, taking the timeline as the axis. In terms of information sources, the population prefers to obtain information about screening from healthcare institutions and healthcare professionals because the information obtained from these places is more reliable [24, 26]. Relevant review results show that medical personnel in some areas have deficiencies in screening-related knowledge, technology and communication skills [58]. The need for enhanced training of healthcare personnel was raised. The aim is for them to have sufficient expertise in screening and to be able to communicate information in a way that is easily understood by screening demanders [44, 50]. In terms of information dissemination, with the development of social media, people tend to obtain relevant information through social media. Medical care institutions, government agencies, and some authoritative public health institutions can use social platforms and knowledge manuals to promote screening information and improve people’s screening knowledge and awareness [59].

Through the analysis of the included articles, it is found that the information-searching behaviour of screening demanders is active searching and passive attention. Factors that lead to passive attention to screening information include fear of cancer and demographic factors (language barriers, cultural factors, educational level, economic pressure, and social status). Participants expressed a desire for Socio-psychological support to help them overcome their screening-related fears, anxieties, and feelings of embarrassment [41, 49], which is similar to the findings of other reviews [60, 61]. Consistent with the above discussion results, it is necessary to consider the language environment of information demanders when disseminating screening information. Some participants suggested that the current screening cultural environment should be improved to reduce screening stigma [24], and family members could be used as the motivation for screening [41] to actively obtain screening information and participate in screening activities. The main factor that promotes the active search behaviour of screening demanders is the lack of information. Some participants said that the information given by medical personnel is limited, and they do not understand the relevant medical terms, forcing them to search for relevant information by themselves. In the future, not only will there be support from healthcare institutions but also the use of authoritative institutions, such as the government and public health institutions, to promote the dissemination of information related to screening [45].

Implications for future research

In general, improving the effectiveness of the dissemination of information about screening is crucial to the smooth implementation of screening. There is still room for further research on screening-related information: (1) Currently, there are only two reports on the information needs of screening service providers. Screening service providers are an important source of information for screening demanders, but some providers do not have a sufficient understanding of screening-related information. Therefore, research on the information needs of screening service providers can be strengthened in the future. (2) The current studies only present the content of information needs of screening service providers and demanders and do not further explore the difference in the content of information needs of different population characteristics, such as age, gender, education level, and economic status. The significance of in-depth research on this aspect is that information providers can give them preferred information content according to the characteristics of the population to improve the efficiency of information dissemination. (3) In the age of data and information, Internet tools can provide convenience for people to search for information, but the Internet information is mixed. There may be wrong or misleading information on the Internet, so people need authoritative websites to provide them with information resources related to screening. In the future, according to the information requirements and preferences summarised in this review, online information retrieval modules related to different cancers can be developed and updated regularly to provide personalised support for screening demanders to obtain reliable information.

Limitations

While this review provides some insights for those involved in screening efforts, there are several limitations. First of all, there was no set number of years for literature retrieval. Four of the literature included in the analysis were before 2014, and there may be a certain lag in some information needs content. However, to avoid missing meaningful information, it was finally decided to include these four literatures in the analysis. Secondly, we excluded articles on information needs related to cancer genetic testing because our study was mainly aimed at exploring the information needs of screening service providers and the demand side in routine screening work (that is, routine screening content recommended by authoritative guidelines), to promote the smooth implementation of routine screening work. In addition, we only focused on qualitative studies of screening-related information needs, which can lead to missing valuable findings from quantitative studies. In the future, the types of studies included in the analysis could be broadened to fully understand the information needs associated with cancer screening.

Conclusions

This review provides an overview of the information needs of cancer screening participants, as well as the requirements and preferences for information and associated factors of information-seeking behaviour. When conducting cancer screening work, whether it is to carry out screening-related health education or daily screening work, relevant staff can refer to the screening information needs content synthesised in this review, combined with the preferences of screening demanders and providers, to give appropriate information to help them better participate in or perform cancer screening work. In the future, screening related information needs can be improved from the perspective of screening service providers and different population characteristics, in order to provide help for the smooth promotion of routine cancer screening.

Authors’ contributions

ZMY and CF conceptualized and designed the study; WD and WYQ searched and screened the literature; ZMY and CF analyzed the data; WYQ and ZMY prepared figures, tables, and appendixes; ZMY and CF wrote the main manuscript text. All authors reviewed the manuscript.

Funding

Project of "Nursing Science" Funded by the 4th Priority Discipline Development Program of Jiangsu Higher Education Institutions (Jiangsu Education Department [2023] No.11).

Data availability

The datasets used and analysed during the current study are available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.