Childhood Cancer Information-Seeking: Findings from the National Cancer Institute’s Cancer Information Service

Abstract

The benefits of cancer information-seeking may be particularly salient to individuals impacted by childhood cancer, including patients, caregivers, health professionals, and advocates. The purpose of this study was to explore information-seeking patterns for childhood cancer through the National Cancer Institute’s Cancer Information Service (CIS), a multi-channel, bilingual resource for cancer information. The study team conducted descriptive analyses on secondary data characterizing 1820 caregivers, health professionals, organizations, and members of the general public who contacted the CIS about childhood cancer between September 2018 and June 2022. Almost 80% of inquiries about childhood cancer were initiated by caregivers, followed by the public, health professionals, and organizations. Although English was the primary language used by individuals to reach the CIS when discussing childhood cancer, there were variations in points of access (i.e., telephone, instant messaging, email, social media) across the four user groups. Most childhood cancer inquiries were about staging and treatment, and the primary cancer sites discussed by CIS users were neurologic or brain, hematologic, and musculoskeletal cancers. Discussion topics included managing and coping with cancer, clinical trials, and treatment side effects. Just over half (54%) of CIS contacts about childhood cancer resulted in a health professional referral. Findings provide direction for the CIS and other public health organizations to deliver, prioritize, and tailor their services to support the information needs of childhood cancer survivors and their families—as well as those who care and advocate for them—who may have a significant need for credible cancer information.

Introduction

Health information-seeking is an important behavior that individuals can undertake to understand, manage, and cope with a significant health condition such as cancer [1]. Cancer information-seeking may be particularly beneficial to individuals affected by childhood cancer, including patients, caregivers, health professionals, and advocates.

When a child is diagnosed with cancer, caregivers must navigate complex medical decisions and support their child through treatment and long-term survivorship, while simultaneously dealing with personal issues such as increased stress, anxiety, and emotional distress [2]. Most parents of children with cancer express a desire to obtain as much information as possible regarding their child’s diagnosis, including options for treatment and survivorship care, as well as how to manage acute and chronic adverse effects of the disease and its treatment [3]. Caregivers may also seek information on the impact of the cancer diagnosis and its treatment on family life, patients’ current and future quality of life, and patients’ emotional well-being [3].

Importantly, engaging in cancer information-seeking may also increase caregivers’ and healthcare providers’ knowledge of, and subsequent access to, novel therapeutic and clinical trial opportunities for pediatric cancer patients. High patient enrollment and participation in clinical trials have played a significant role in increasing survival outcomes for children with cancer [4], with physicians largely responsible for recommending clinical trial opportunities to their patients and facilitating enrollment [5]. Moreover, given the large advocacy base for childhood cancer, information-seeking by related organizations and members of the general public may support increased awareness and activism for pediatric oncology research and treatment [6].

A useful resource for researchers and practitioners to understand health information-seeking behavior as it relates to childhood cancer is the National Cancer Institute’s (NCI) Cancer Information Service (CIS), a federally sponsored information service established in 1975 that provides the latest, most accurate cancer information to patients and their families, the general public, organizations, and healthcare professionals [7]. Trained cancer information specialists (IS) answer inquiries in English and Spanish, specializing in interactive communication and provision of user-centered information that addresses the cancer care continuum, tobacco cessation support, and clinical trials education [8].

The CIS infrastructure and data collection procedures enable IS to respond and document in real-time the information needs of those affected by cancer, including information requests related to pediatric cancer. Therefore, the purpose of this study was to explore descriptive patterns of information-seeking related to childhood cancer among individuals contacting the CIS from September 2018–June 2022. Researchers and practitioners may use these findings to identify specific audiences that may have heightened needs for pediatric cancer information as well as programmatic services and cancer information topics that may benefit from increased awareness and promotion.

Methods

CIS User Groups and Childhood Cancer Inquiries

Individuals are able to contact the CIS through four primary access channels: telephone, LiveHelp instant messaging, email, and social media. Using an electronic contact record form, IS code each interaction to document the CIS user type, cancer site(s) discussed, phase of the cancer continuum that the inquiry centers on, the cancer information needs that were articulated during the interaction, and the IS’ response to the user’s inquiry. The four primary user types included in the current analysis were general public, health professional, organization, and caregiver. General public users comprise individuals who may have general cancer-related questions or concerns about symptoms but have not been diagnosed with cancer. Health professionals are defined as physicians, nurses, physician assistants and nurse practitioners, social workers, and other allied and public health professionals. Individuals contacting the CIS representing organizations, healthcare facilities, and advocacy groups are classified as “organization.” Caregivers include CIS users who self-identify as a “spouse, friend, or relative” of a diagnosed cancer patient. Among these four primary CIS user groups, we subsequently identified those who inquired about “childhood cancer,” which the CIS defines as a cancer diagnosis among children from birth to 18 years, along with any discussion of a specific type of childhood cancer (e.g., leukemia, sarcoma).

Other types of CIS users such as tobacco users, students, media, or unspecified contacts were excluded from analysis. We also excluded cancer patients due to the small number of individuals who both self-identified as a cancer patient and inquired about childhood cancer (n = 54).

Measures

We examined categorical variables across the four CIS user groups, including language of service (English, Spanish), point of access (telephone, LiveHelp, email, social media), and phase of the cancer continuum (general public/undiagnosed, screening/diagnostic, staging/treatment, post-treatment, and end-of-life). In addition, we analyzed variables that capture the subject(s) of interaction and IS referrals to resources and organizations. For each inquiry, IS may code up to four subjects of interaction from a predetermined list (e.g., general cancer questions, causes and prevention, treatment, clinical trials, managing cancer care) and up to four referrals given (e.g., healthcare professional, community organization, other healthcare facility). For this analysis, we aggregated all interactions recorded in the subject(s) of interaction and referral(s) given fields and reported percentages out of the total number of inquiries. The sums of percentages for these variables exceed 100 since interactions could have multiple codes.

Data Analysis

We calculated descriptive statistics for each of the key variables, followed by cross-tabulations to identify differences between inquiries that were related to childhood cancer. We conducted all analyses in STATA/SE 15.1 (StataCorp LLC, College Station, TX). As CIS programmatic data is fully deidentified, related analyses are deemed non-human subjects research by Westat (No. 00005551) and National Institutes of Health (No. 568158) Institutional Review Boards.

Results

From September 2018 to June 2022, there was a total of 1820 CIS interactions related to childhood cancer across the four user groups: caregivers accounted for almost 80% of these interactions (n = 1401, 77.0%), followed by the general public (n = 236, 13.0%), health professionals (n = 107, 5.9%), and organizations (n = 76, 4.2%). The monthly timeline of childhood cancer inquiries from these four groups is indicated in Fig. 1. Two notable peaks were observed in spring/summer 2020 and fall 2021 among the general public; winter/spring 2021 was a notable time period for contacts from caregivers.

Fig. 1.

Number of monthly childhood cancer inquiries to the CIS by the user group, September 2018–June 2022

Language of Service

As presented in Table 1, all four user groups primarily used English when inquiring about childhood cancer, accounting for 82.3% of interactions. Twenty percent of caregivers and 14% of general public users contacted the CIS in Spanish to inquire about childhood cancer; Spanish-language interactions by health professionals and organizations were infrequent.

Table 1.

Characteristics of CIS inquiries related to childhood cancer, by the user group (%)

	General Public	Health Professional	Organization	Caregiver	Total
N	236	107	76	1401	1820
Language
English	86.02	95.33	98.68	79.73	82.25
Spanish	13.98	4.67	-	20.27	17.75
Total	100	100	100	100	100
Point of access
LiveHelp	14.41	35.51	19.74	35.55	32.14
Email	63.14	40.19	43.42	33.19	37.91
Telephone	10.59	22.43	34.21	28.69	26.21
Social media	11.86	-	-	2.57	3.74
Total	100	100	100	100	100
Cancer sites
Neurologic	-	8.41	7.89	23.98	19.45
Hematologic	4.24	12.15	-	18.56	15.77
Musculoskeletal	-	6.54	-	13.42	11.10
Other	2.12	9.35	-	8.92	7.86
None specified	90.68	63.55	78.95	35.12	45.82
Total	100	100	100	100	100
Cancer continuum phase
General public/undiagnosed	16.10	4.67	7.89	0.43	3.39
Screening/diagnostic	2.54	-	-	-	3.06
Staging/treatment	8.47	45.79	14.47	77.02	57.45
Post-treatment	-	-	-	4.71	4.65
End-of-life	-	-	-	3.00	2.07
None specified	71.61	44.86	72.37	11.13	29.38
Total	100	100	100	100	100
Subject of interaction*
Managing cancer care/coping	5.09	13.08	13.16	39.11	32.09
Clinical trials	2.97	42.06	-	36.12	30.88
Treatment/side effects	7.20	14.02	6.58	28.05	23.63
General questions about cancer	25.00	18.69	26.32	15.56	17.42
Prevention	4.24	-	-	1.21	1.65
Tests	-	-	-	1.43	1.37
Referrals given*
Doctor/nurse/pharmacist/social worker/other health professional	12.71	18.69	9.21	66.02	53.96
National or community organization/other government program	10.59	24.30	21.05	25.41	23.24
NCI-designated cancer centers	58.90	16.82	42.11	10.78	18.68

^*Total Ns for each user type are used as denominators for each variable; categories are not mutually exclusive and therefore do not add up to 100%

CIS, cancer information service

Point of Access

The use of LiveHelp, email, and telephone were similar overall, comprising 32.1%, 37.9%, and 26.2% of childhood cancer interactions, respectively (Table 1). Social media was the least frequently used CIS point of access, accounting for 3.7% of all users’ interactions, but a larger percentage of the general public (11.9%) used social media as an access point compared to other users. In a cross-tabulation of language of service and access point, nearly half (47.6%) of Spanish-language contacts used LiveHelp to inquire about pediatric cancer (data not shown).

Cancer Sites

We grouped inquiries about specific types of childhood cancers into three primary categories: neurologic or brain cancers (19.5%); hematologic (i.e., leukemia, Hodgkin and Non-Hodgkin lymphomas) (15.8%); and musculoskeletal cancers such as soft tissue sarcomas (11.1%) (Table 1). Other cancer sites (7.9%) included breast, digestive, endocrine, eye, genitourinary, gynecologic, head/neck, lung, respiratory, skin, and AIDS-related cancers. Although caregivers most often inquired about neurologic cancers, health professionals commonly inquired about hematologic cancers. Almost half of childhood cancer interactions did not have a specific cancer type recorded; most of these came from the general public and organizations.

Cancer Continuum

As presented in Table 1, staging/treatment was the most frequently discussed phase of the cancer care continuum across all childhood cancer discussions, accounting for over half (57.5%) of interactions overall, 77.2% of caregiver interactions, and 45.8% of health professionals’ inquiries. End-of-life was the least represented cancer continuum phase overall. The remaining 30% of childhood cancer-related inquiries that did not specify a phase of the cancer care continuum were primarily driven by organizations and the general public.

Subject(s) of interaction

Overall, most pediatric cancer inquiries to the CIS were about topics related to managing cancer care or coping with cancer (33.0%), clinical trials (30.9%), and treatment/side effects (23.6%) (Table 1). Caregivers predominantly inquired about managing or coping with cancer care (40.2%), clinical trials (36.1%), and treatment/side effects (28.1%). Almost half of childhood cancer inquiries made by health professionals were about clinical trials. Interactions with general public users and organizations mostly involved general questions about cancer.

CIS Referrals

More than half of contacts were encouraged by IS to follow-up with a qualified health professional (54.0%), such as a doctor, nurse, pharmacist, or social worker, following the interaction with the CIS (Table 1). The proportion of referrals to a healthcare provider was highest among caregivers (66.0%). IS referred almost one-quarter (24.3%) of health professionals to national or community organizations or governmental programs. IS most frequently recommended members of the general public and organizations to contact an NCI-Designated Cancer Center despite these referrals being the least common referral source overall.

Discussion

The focus of this descriptive study was to examine childhood cancer-related interactions between the CIS and members of the general public, health professionals, organizations, and caregivers over a 46-month period in order to better understand patterns of information-seeking among these different groups. Over the study period, we observed several peaks of increased childhood cancer inquiries, particularly among caregivers and the general public, which may reflect an increase in advocacy activities each spring and late summer, including Childhood Cancer Awareness Month in September, as well as promotion of NCI’s Physicians Data Query cancer information summaries (https://www.cancer.gov/publications/pdq) on social media in spring 2021.

Findings indicated that caregivers of individuals with pediatric cancer most often contact the CIS. This result is consistent with prior research, which has shown that caregivers want to obtain ample information about their child’s health situation [3] and prefer to learn through multiple modalities [9]. The need for more information about childhood cancer presents an opportunity for healthcare providers to share evidence-based informational resources with caregivers during the different phases of the pediatric cancer continuum. Additionally, this descriptive profile provides evidence of a heightened need for credible childhood cancer information among the general public, organizations, and healthcare professionals. Across the four CIS user groups, the most common childhood cancer sites discussed were neurologic and hematologic cancers. This result was expected as leukemia, a hematologic cancer, and brain and other nervous system cancers are the most common childhood cancer types [10]. The high proportion of childhood cancer inquiries to the CIS unrelated to a specific cancer type was influenced by the general public and organizations and may be reflective of the public’s increasing interest in childhood cancer and recent legislation and federal investments in childhood cancer research [6, 11–13].

Though most CIS interactions related to childhood cancer were conducted in English, caregivers and the general public were more likely than other user groups to seek information in Spanish (which may serve as a proxy for Hispanic ethnicity). Previous research has shown that Hispanic patients in general experience challenges in cancer information-seeking due to language and literacy barriers [14], and these issues may be particularly heightened among Hispanic parents of childhood cancer survivors as they report considerable cancer-related stigma and increased psychosocial distress [15, 16]. Findings from the current study indicate the need for culturally competent and language-concordant access points and resources that address equitable access to childhood cancer information.

Another finding of this study concerns the fact that social media was the least used channel for contacting the CIS about childhood cancer across all user groups (although the general public was found to access social media more often than other user groups). Notably, caregivers rarely contacted the CIS for childhood cancer information through this channel. Given research evidence suggesting social media is commonly used by caregivers to both find and share cancer-related information and support [17–19], we posit that caregivers are likely complementing their social media use with more medically focused information from the CIS. Similarly, in analyzing personal Facebook pages hosted by parents of children with acute lymphoblastic leukemia, Bouchard et al. found that only 171 posts—of over 15,800 total posts—contained medically oriented cancer information [19], indicating pediatric cancer caregivers may be using social media primarily to share their cancer experiences and obtain emotional peer support from other families dealing with similar cancer diagnoses [18]. The relatively low uptake of social media as a means of contacting the CIS among caregivers may also reflect a sense of urgency when seeking information about their child’s cancer and therefore higher usage of the telephone or instant messaging, for example, which allows for real-time interaction with an IS. Prior research has focused on the particular importance of the CIS’ bidirectional access channels as they allow experienced, well-trained cancer IS to provide immediate responses to individuals’ cancer information needs [20].

Overall, most CIS interactions about childhood cancer addressed the staging/treatment phase of the cancer care continuum, which likely reflects a greater need for informational support during this intensive phase of care, especially among caregivers [17, 18]. This finding provides guidance on information-sharing priorities at the CIS and may be used to shape health communication efforts focused on the dissemination of evidence-based staging and treatment-related pediatric cancer information [18]. Given that prior research indicates a gap exists between the services provided by cancer organizations and healthcare providers and the expressed needs of cancer patients and caregivers [21], it is important for organizations to make these programmatic efforts more responsive to their constituents. Addressing this disconnect could encourage greater uptake of formal informational support networks—which are currently underutilized—by individuals affected by cancer [21]. The finding that inquiries about childhood cancer related to diagnosis, post-treatment, and end-of-life were uncommon across the four CIS user groups is also notable, as these are phases of the cancer care continuum that require patients, caregivers, and providers have access to evidence-based health information and support. We recommend further assessment of childhood cancer information needs across these specific phases of the cancer care continuum and determination of how services such as the CIS may promote and tailor programs and resources in these domains to various constituents.

The subjects of interaction related to childhood cancer varied by user group. For example, the general public and organizations primarily sought information related to cancer in general (e.g., childhood cancer statistics and epidemiological data, donations and research funding, potential symptoms of cancer, and other non-treatment-related questions). Consistent with prior research [18, 22], caregivers frequently inquired about managing cancer care and treatment/side effects and coping, which may be reflective of their preferences for shared decision-making with the oncology team; their need to have technical treatment information explained in lay language by the IS; their role as informal caregivers charged with numerous healthcare and financial decisions on behalf of their child; and increased psychosocial burden when dealing with their child’s cancer diagnosis.

Study findings also indicate health professionals and caregivers commonly have questions regarding clinical trials, including discussions of trials as a treatment option; questions about cost, enrollment procedures, and eligibility criteria; and requests for a clinical trials search. The CIS has long served as a trusted resource on clinical trials; IS are specifically trained to translate clinical trial information into clear language to inform decision-making and promote proactive clinical trial enrollment [23, 24]. More recently, the CIS began providing an enhanced clinical trials service wherein IS offer users periodic callbacks to ensure the tailored clinical trial search was received, assess if there are any questions about the search provided, determine if there are any barriers to pursuing a trial, and identify any additional information needs that can be addressed. Promotion of and education about clinical trials remains a high priority for the CIS given the importance of pediatric cancer research in establishing standard treatment protocols and resultant improvements in childhood cancer survival rates [25].

The CIS also supports and encourages communication and follow-up with CIS users’ health providers as indicated by the high rates at which contacts were referred to a qualified healthcare provider, such as the child’s oncology care team, after the CIS interaction. Given IS are not healthcare professionals, it is imperative that CIS users understand they should share the information they receive from the CIS with a healthcare provider. It was also notable that for the general public and organizations, IS made more referrals to NCI-designated Cancer Centers. NCI Cancer Centers are recognized for excellence in cancer research and treatment, including the provision of clinical trials, and may serve as an important resource for those needing information about childhood cancer (https://www.cancer.gov/research/infrastructure/cancer-centers/find).

The findings of this descriptive analysis should be interpreted by readers in light of several limitations. First, these data originated from a convenience sample of proactive cancer information-seekers to one federal health agency and results cannot be generalized to caregivers, health professionals, organizations, or the public more broadly. Second, we were unable to analyze contacts from patients inquiring about childhood cancer due to a small sample size and limitations in assessing users’ current age and/or age at diagnosis. Third, sociodemographic data are only collected for a small, random selection of CIS interactions because of The White House Office of Management and Budget mandates to minimize respondent burden. Due to small sample sizes across sociodemographic variables, we excluded these data from analysis. Similarly, since personal identifiable information is not collected by IS, we treated each contact as a unique user. Lastly, although IS go through an extensive training program that focuses on provision of patientcentered communication and high-quality coding of conversations with users, this coding is subject to internal biases or perceptions of the IS and the user who is self-reporting information about their cancer-related situation.

Despite these limitations, findings from this descriptive assessment of cancer information-seeking provide a better understanding of the unique information needs and preferences of caregivers, healthcare providers, organizations, and members of the general public inquiring about pediatric cancer. Clinical teams, the CIS, and other public health organizations may draw from these findings to deliver, prioritize, and tailor their services to meet the unique experiences of these various groups. Due to research and clinical advances in diagnosis and treatment, more children diagnosed with cancer are living longer. These survivors and their families, healthcare providers, and organizations that support childhood cancer survivors may therefore have long-term needs for credible cancer information from organizations such as the CIS.