A cross-sectional online survey was conducted to assess digital and navigational HL and self-management skills in adult cancer survivors in Switzerland using nonprobabilistic sampling. To reach cancer survivors in different phases of their disease, a self-declared cancer diagnosis was the only criterion to participate in the survey. Recruitment included advertising the survey at several time points with flyers at health and cancer care institutions, as well as through corporate social media channels (eg, LinkedIn [LinkedIn Corp] and Instagram [Meta Platforms]), especially to minimize the effort required for recruitment by health and social care staff. No preselection of cancer survivors occurred to avoid the screening burden at the supporting institutions. To reach potential participants who preferred analog measures, printed questionnaires were also provided to the recruiting institutions.

Participants completed the survey online (or by paper and pencil, if preferred) using a web-based survey tool (UNIPARK; Tivian XI GmbH) between June and December 2024. The survey was available in German and French, as these are major languages spoken in Switzerland.

The study was submitted to the ethics committee of the Canton of Zurich, which confirmed that the study does not fall under the Human Research Act and therefore granted a waiver (Req-2024‐00298). The study complies with the principles of the Declaration of Helsinki.

The advertisement for participation included initial information about the study, while more detailed information on the study aim, expected survey completion time, data protection, and anonymity of collected data were provided before starting the survey. After reading this information, participants were asked to confirm their consent to participate.

The online survey consisted of four parts, including (1) sociodemographic information, (2) questions on digital HL, (3) navigational HL, and (4) self-management skills.

Self-management skills were assessed using the Health Education Impact Questionnaire (heiQ). The original self-report questionnaire includes 42 items grouped into 8 dimensions to measure the benefits of patient education programs across chronic conditions [29]. Of these 8 heiQ dimensions, five have been identified as critical dimensions to empower patients with cancer: (1) emotional distress (heiQ3), (2) constructive attitudes and approaches (heiQ5), (3) skill and technique acquisition (heiQ6), (4) social integration and support (heiQ7), and (5) health service navigation [30]. Therefore, for this study, a cancer-specific 25-item version including only these 5 dimensions was used [31,32]. Each question is answered on a 4-point Likert scale ranging from 1 (“strongly disagree”) to 4 (“strongly agree”), except for the emotional distress scale, which is scored in reverse. A mean score for each scale was calculated, with higher scores indicating better self-management skills. The heiQ has shown good psychometric properties [31,32].

A total of 131 participants completed the survey. Table 1 provides an overview of the sociodemographic and clinical characteristics of the participants.

Most participants (53/131, 40.5%) were diagnosed with breast cancer, followed by lung cancer (16/131, 12.2%), lymphoma (13/131, 9.9%), and brain tumors or metastases (11/131, 8.4%). The average time since diagnosis was 6 (SD 5.2) years. Most participants (71/131, 54.2%) did not report any other chronic disease, while 24.4% (32/131) had one and 19.1% (25/131) had multiple chronic diseases. Table 2 displays the number of participants using one or more cancer care services, such as support groups. Complementary medical advice was by far the most frequently sought service (53/131, 40.5%).

The mean digital HL index score, thus the average percentage of “very easy” and “easy” items in the HLS₁₉-DIGI-HI, was 57.8 (SD 35.4), with 6.6% (8/122) of the participants having excellent, 30.3% (37/122) sufficient, 36.9% (45/122) inadequate, and 32.8% (40/122) problematic digital HL. Based on these categories, 30.3% (37/122) of participants were classified as having high digital HL and 69.7% (85/122) having low digital HL. The scaled mean score of all participants was 52.88 (SD 20.21), while those with high digital HL had a mean score of 74.77 (SD 10.93).

Looking at the individual items of the HLS₁₉-DIGI-HI (Figure 1), it becomes apparent that the majority struggled with judging whether information is reliable (70/122, 57.40%) or offered with commercial interest (67/122, 54.90%) and to use the information to help solve a health problem (63/117, 53.80%). On the other hand, most participants found it easy to use proper search terms (91/121, 75.20%), understand health-related online information (84/121, 69.40%), and compare the information provided by different websites (84/122, 68.80%). It should be noted that those who responded “I don’t know” are not included in the reported percentages, as these responses are considered invalid.

Regarding the interaction with digital resources, the HLS₁₉-DIGI-INT scaled mean score for all participants in this study was 62.86 (SD 27.30). Most participants found it easy to express their opinion in social media forums (65/92, 70.6%) and to formulate a written question for a health care provider (62/92, 67.4%; Multimedia Appendix 1). Notably, 39 out of 131 (29%) participants responded with “I don’t know” to either one or both items and were, thus, considered invalid.

In the HLS₁₉-DIGI-DD, participants’ mean score was 1.64 (SD 0.67), meaning that on average, participants used digital resources 1‐3 times per week. Digital devices such as pedometers or smartwatches and health apps were used most frequently, with 25.4% (32/126) or 25.2% (32/127), respectively, using them once or more times a day. Contrary to this, social media and digital interactions with the health system, for instance, for online appointments, were used less than once per week or were considered irrelevant by 77.0% (97/126) and 85.7% (108/126), respectively (Multimedia Appendix 2).

The correlation analyses did not reveal any significant correlations of the mean frequency of use of digital devices and resources (HLS₁₉-DIGI-DD) with either the scaled mean scores of HLS₁₉-DIGI-HI (Spearman ρ=0.06; P=.54) and HLS₁₉-DIGI-INT (Spearman ρ=0.09; P=.38) or with any of the subitems (Spearman ρ=0.012; P=.89; Spearman ρ=0.11; P=.32).

In the HLS₁₉-NAV, participants had a mean navigational HL index score of 53.78 (SD 30.89), with 4.8% (6/124) of the participants categorized as having excellent, 24.2% (30/124) sufficient, 54.8% (68/124) inadequate, and 21% (26/124) problematic navigational HL. Based on these categories, 24.2% (30/124) of participants were classified as having high navigational HL, and overall, participants had a scaled mean score of 51.3 (SD 18.08) points.

Most participants struggled with judging whether a particular health service will meet their expectations (77/122, 63.1%), understanding information on ongoing health care reforms that might affect their health (74/123, 60.2%), and finding out about their rights as a patient (71/122, 58.2%; Figure 2). On the other hand, the majority found it easy to judge which type of health service they need (85/124, 68.5%) and to understand how to get an appointment (103/123, 83.7%).

Comparing these results with raw data from the HLS_19-21 study investigating the general adult population living in Switzerland (SGP), the present study’s population was significantly older (U=128055.00; P<.001) and differed in gender distribution (χ²₁=28.70; P<.001; φ=.10), with a higher proportion of female participants compared to the SGP. No significant differences were found in the ability to deal with digital health information (HLS₁₉-DIGI-HI; P=.64). In contrast, both men and women in this study reported a significantly higher ability to interact with digital resources (HLS₁₉-DIGI-INT, P<.001 to P=.02) and a more frequent use of digital devices and resources (HLS₁₉-DIGI-DD, P<.001). Navigational HL (HLS₁₉-NAV) did not differ significantly between groups (P=.87). (Table 3 and Multimedia Appendix 3).

When compared to the SGP subpopulation of participants with a chronic condition, participants were similar in age (U=60785.50; P=.92) but differed in gender distribution (χ²₁=24.85; P<.001; φ=.15). No significant differences were found in digital HL (HLS₁₉-DIGI-HI; P=.05). However, both male and female participants of this study had higher digital interaction abilities (HLS₁₉-DIGI-INT; P<.01) and a higher frequency of digital device use (P<.001). Concerning navigational HL, a significant difference was found only among men (P<.02).

Overall, male and female participants of this study showed a similar pattern when compared with the SGP. However, across all variables, effect sizes were consistently larger among men (Table 3 and Multimedia Appendix 3).

Figure 3 shows that in all subscales, most participants indicated high self-management, with the highest scores in “health service navigation” (median 3.6, IQR 0.8) and “constructive attitudes” (median 3.6, IQR 1) and the lowest in “emotional distress” (median 3.2, IQR 1).

The regression analyses of the heiQ subscales revealed that three variables significantly influenced the different dimensions of self-management skills: (1) financial deprivation (P<.001-.03); (2) the lowest level of education (ISCED 1; P=.002-.04); and (3) social support (P≤.001-.005) (Multimedia Appendix 4). Only in heiQ6, the time since diagnosis was another significant predictor (P=.004). All regression models were statistically significant with P<.001 and adjusted R² values ranged from R²=.25 (heiQ3) to R²=.46 (heiQ7); thus, the models explain a medium to high amount of variation.

Sufficient digital HL, navigational HL, and self-management skills are essential for cancer survivors to successfully manage the many challenges they encounter throughout their cancer journey. The present study delivers first-time quantitative data about digital and navigational HL of cancer survivors in Switzerland in comparison to the general Swiss population and describes their self-management skills.

The results indicate that a substantial proportion of cancer survivors in Switzerland reported difficulties in managing digital health information and services (69.7%) and in successfully navigating the health care system (75.8%), reflecting generally low levels of digital and navigational HL. Previous studies have yielded inconsistent results regarding digital HL among patients with cancer. For instance, a Canadian study found that 66.3% of patients with lung cancer perceived themselves as having low digital HL [35], whereas other studies reported lower proportions (41.5% [36] and 39.4% [34], respectively) among patients with various cancer types. These discrepancies may partly be explained by the use of different instruments to assess digital HL. In addition, cross-country variations in health care systems and the support provided to cancer survivors by health care professionals and community networks may further contribute to such differences.

In comparison with the general adult population living in Switzerland [20], a slightly lower proportion of cancer survivors in this study reported low digital HL levels, while the proportion of those with low navigational HL was slightly higher. However, statistically significant differences were only found for the ability to interact with digital resources, with cancer survivors reporting higher abilities. The latter finding is unexpected given the increased vulnerability of cancer survivors, their significantly higher age, and the negative correlation between digital HL and age, which previous studies observed in both the general population and cancer survivors [20,37,38]. One possible explanation for why cancer survivors still show similar or even higher levels of digital and navigational HL is that they need to interact with the health care system more frequently than the general population, and in recent years, these interactions have increasingly taken place through digital channels. In line with this assumption, cancer survivors reported a significantly higher use of digital health resources than the general population. Although no significant association between digital resource use and digital HL was found, the combination of frequent engagement with health care services and digital tools may nonetheless contribute to the development of certain digital and navigational HL skills, irrespective of age. In addition, a high proportion of participants reported using complementary medical advice as well as specialist or advanced practice nurse consultations. Previous research suggests that support from health care professionals [39]—such as specialized breast or lung cancer care nurses available to patients with cancer in Switzerland [40-42]—as well as informational and emotional support from health communities [43] may enhance digital HL of cancer survivors by helping them find, understand, appraise, and apply relevant digital health information. Despite these potential facilitating factors, the large proportion of cancer survivors with low digital and navigational HL observed in this study indicates that access to such services may be limited in Switzerland or that existing services may still be insufficiently tailored to cancer survivors’ digital HL needs. This interpretation is consistent with previous research showing that difficulties in accessing coordinated, personalized services and care are common rather than exceptional [44].

Beyond the overall HLS₁₉ mean scores, an item-level analysis of individual questionnaire items further highlights critical challenges and the importance of support services and improving digital and navigational HL. Cancer survivors reported most difficulties in judging whether the digital information is reliable or offered with commercial interests, and more than half of respondents also indicated difficulties in applying digital information to solve a health problem. These challenges may partly reflect the complexity and individual nature of cancer, as well as the continuous opportunities for new treatment options provided by clinical research. However, similar trends were also observed in the Swiss population study, with 66% of Swiss residents reporting difficulties in assessing the reliability of health information, 63% struggling with determining whether commercial interests were influencing the information, and 53% finding it challenging to apply the information to address a health-related problem [20]. These findings highlight that such difficulties appear to affect people in general, regardless of any specific health condition, and that they may stem from the vast amount of health information available online. This so-called “infodemic”—an overabundance of both accurate health information and mis- or disinformation [45,46]—makes it highly challenging to evaluate the quality, that is, the reliability and the credibility of the information. The spread of mis- and disinformation especially occurs on social media. A study conducted during the COVID-19 pandemic reported that individuals residing in Switzerland did not regard social media as a trustworthy source of health information [47]. This perception may partly explain why most participants in the present study reported using social media for health-related information fewer than once a week.

In addition to improving digital and navigational HL, self-management promotion is recognized as an important strategy to support cancer survivors in dealing with their disease in their everyday life and maintaining and enhancing their health and well-being [10,11]. In this study, most participants reported good self-management skills, consistent with findings from a previous Swiss study of breast cancer survivors [48]. In contrast, the Health Literacy Survey 2019-2021–Switzerland (HLS_19-21-CH) study [20] found that 66% (613/928) of participants with one or more chronic diseases had low self-management skills. These differences may partly be explained by the instruments used. While the HLS_19-21-CH study assessed self-management skills with only 4 questions and with a focus on health care–related topics, the heiQ covers topics going beyond, capturing a broader range of self-management dimensions. The overall high level of self-management skills observed in this sample may be explained by the participants’ relatively high level of social support and low levels of financial deprivation. These factors were identified as significant predictors of self-management skills in this analysis. Another explanation may be the fact that self-management focuses on specific behaviors, and informal and practice-based self-management support, such as counseling by health care professionals, nursing consultations, and support groups, addressing the dimensions assessed in our study, may already be relatively well integrated into comprehensive cancer care. However, while various self-management interventions and programs exist internationally, which are expected to foster self-management skills in cancer survivors [49], structured and theory-based self-management interventions and programs have so far been only partially integrated into routine clinical care in Switzerland, with little data on their effectiveness. Available interventions include a peer-led self-management program for breast cancer survivors [48], nurse-led basic symptom self-management support for patients receiving first-line systemic outpatient anticancer treatment [50], and a psycho-educational cancer pain self-management intervention [51]. Although these interventions were generally perceived as beneficial, their broader implementation remains limited due to challenges related to delivery, feasibility, and individual preferences regarding timing and format [48,50].

In contrast, measures that specifically promote digital and navigational HL are still rarely used in practice [52]. This imbalance may explain why self-management skills appear relatively strong in this sample, while digital and navigational HL levels remain low. Nevertheless, the high heiQ scores, particularly on the “health service navigation” scale, appear somewhat surprising given the low scores in digital and navigational HL. This discrepancy can be explained by differences in constructs. Although self-management is recognized as an essential aspect of general HL [9], the instruments used to assess self-management skills and navigational HL are based on different constructs. The “health service navigation” items from the heiQ focus more broadly on relationships and communication with health care professionals, while HLS₁₉-NAV items revolve around specific navigational tasks within the entire health system. The lowest self-management skills were observed in relation to emotional distress, which aligns with previous research indicating that emotional needs are among the most frequently unmet needs in patients with breast cancer [53]. This finding underscores the importance of cancer care services addressing not only the physical but also the emotional challenges faced by cancer survivors.

Overall, the findings suggest that efforts to strengthen digital and navigational HL among cancer survivors in Switzerland are needed and that particular attention should be paid to those who experience financial deprivation, have a migration background, lower educational levels, and limited social support. These findings align with previous research that has shown that economic status and HL contribute to inequalities in cancer care experiences in Switzerland [54], suggesting that this may also be true for digital and navigational HL. Moreover, findings are supported by recently published consensus recommendations for comprehensive survivorship care, emphasizing patient empowerment, including the promotion of HL and self-management, as well as psychosocial and socioeconomic support and the involvement of interprofessional experts such as social workers. As a core element for the integration of different types of support, a survivorship plan is recommended [55]. In addition, previous research indicates that interventions, programs, and strategies aimed at strengthening digital and navigational HL of cancer survivors should not only focus on individual competencies. Instead, a more holistic approach is needed, including professional and organizational HL [56]. In addition to individual factors, addressing social, situational, and systemic factors can not only strengthen HL of chronically ill individuals but also reduce burdens and demands placed on them [20,23].

This study has several limitations. First, the target sample size could not be reached. With the smaller than expected sample size, the proportion of cancer survivors with low digital and navigational HL may not be adequately reflected. Differences in methodology may limit the comparability of our sample with the Swiss population. Although the modes of administration were quite similar (primarily online), the recruitment approach differed substantially. In the HLS_19-21-CH study, participants were recruited via the Swiss Federal Statistical Office’s sampling frame and contacted at their postal address. This sampling method could not be used for the present study, as no information about specific chronic conditions was available. Although opting for a broad recruitment approach, it allowed little control over who would be reached by these strategies. Following the outreach to partner organizations and the launch of social media advertisements, the research team noted an increase in survey engagement. Nevertheless, cancer survivors without ties to these institutions or lacking social media access may have missed the chance to participate. Though time-efficient for professionals, this impersonal recruitment strategy may have limited the number of participants compared to more personalized methods involving direct health care provider contact. Second, sampling bias cannot be ruled out, as the participants were predominantly female and breast cancer survivors. The latter, however, reflects the prevalence of cancer in Switzerland, where breast cancer is the most common cancer diagnosis among women [3] and the most often studied cancer type in the field of HL [56]. Furthermore, a considerable number had professional experience in health care, and the survey was conducted predominantly online. Thus, it was completed primarily by people who have sufficient digital skills and/or feel at least comfortable enough to engage with an online survey. In addition, data from the survey software suggest that the length of the survey or the lack of incentives may have demotivated some respondents from completing the survey. Overall, engagement with the landing page of the survey (around 800 clicks) was significantly higher than the number of people who started the survey (n=250), of which more than half ultimately finished it. Cancer survivors might be already burdened by fatigue or other health-related issues affecting their willingness to participate in or finish such a survey. Taken together, these factors limit the representativeness of the study population for Swiss cancer survivors, limiting the generalizability of the results as well as the comparisons with the HL study in the Swiss population that used a representative sample for the adult residents in Switzerland. Third, the instruments used rely on self-reported ability to perform certain tasks related to digital and navigational HL as well as self-management skills. Although self-report instruments have the advantage that they are easy to complete, often answered more honestly, and well accepted by respondents, they are limited by the fact that participants might misestimate their level of HL and self-management skills [57]. However, objective HL measurements are scarce and untenable in population-based studies [58]. Additionally, all instruments applied in this study were standardized and validated.

Cancer survivors in Switzerland generally reported low levels of digital and navigational HL, comparable to those of the general Swiss population and subgroups with chronic conditions. These findings emphasize the need to support cancer survivors in Switzerland in dealing with digital health information and navigating the health care system. Particular attention should be given to tasks perceived as the most difficult, including judging the reliability and relevance of health-related information and services, using this information appropriately, and gaining knowledge and understanding of health care reforms and patient rights. Interventions should be better integrated in existing support, targeting digital and navigational HL as well as self-management skills, while considering individual, social, and situational factors, which showed significant associations with these competencies in this study. Given the limitations of this study, future research should examine digital and navigational HL in a larger sample that more accurately reflects the gender distribution and digital affinity of the population. Nevertheless, this study provides valuable insights into digital and navigational HL among cancer survivors in Switzerland. The findings presented here will be complemented with qualitative interview data from cancer survivors and insights from workshops involving cancer survivors and cancer care professionals. These contributions will be used to develop more explicit intervention recommendations.