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  Mobile Apps for Cancer Care and...

  Feb 10, 2020

  Cancer Patients’ and Survivors’ Perceptions of the Calm App: Cross-Sectional Descriptive Study

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  Authors List:

  • Jennifer Huberty  
  • Megan Puzia  
  • Ryan Eckert  
  • Linda Larkey  

  Abstract:

  Background: There is a need for tools to decrease cancer patients’ and survivors’ long-term symptom burden. Complementary strategies, such as meditation, can accompany pharmacologic therapy to improve symptoms. Although support programs with targeted content have wider reach, higher adherence, and greater impact, there are no consumer-based meditation apps designed specifically for cancer. Objective: This study aimed to gather information to advise the development of a cancer-specific meditation app in a small convenience sample of cancer patients and survivors who currently use the Calm app. Methods: Adult cancer patients and survivors who are Calm users (N=82) were recruited through the Daily Calm Facebook page. Participants completed a Web-based survey related to Calm app use and satisfaction, interest in and ideas for a cancer-specific Calm app, and demographic characteristics. Open-ended responses were inductively coded. Results: Participants were aged between 18 and 72 years (mean 48.60 years, SD 15.20), mostly female (77/82, 94%), white (65/79, 82%), and non-Hispanic (70/75, 93%), and reported using Calm at least 5 times per week (49/82, 60%). Although rates of satisfaction with current Calm components were high (between 65/82, 79% and 51/81, 63%), only 49% (40/82) of participants used guided meditations that they felt specifically helped with their cancer-related symptoms and survivorship, and 40% (33/82) would prefer more cancer-related content, with guided meditations for cancer-specific anxieties (eg, fear of recurrence; n=15) and coping with strong emotions (n=12) being the most common suggestions. A majority of participants (51/82, 62%) reported that they would be interested in becoming a member of a Calm cancer community (eg, in-app discussion boards: 41/46, 89%; and social media communities: 35/42, 83%). Almost half of the participants (37/82, 45%) reported that they would benefit from features that tracked symptoms in concurrence with app usage, but respondents were divided on whether this information should be shared with health care providers through the app (49/82, 60% would share). Conclusions: Responses suggest ways in which the current Calm app could be adapted to better fit cancer patients’ and survivors’ needs and preferences, including adding cancer-specific content, increasing the amount of content focusing on coping with strong emotions, developing communities for Calm users who are cancer patients and survivors, and including features that track cancer-related symptoms. Given differences in opinions about which features were desirable or would be useful, there is a clear need for future cancer-specific apps to be customizable (eg, ability to turn different features on or off). Although future research should address these topics in larger, more diverse samples, these data will serve as a starting point for the development of cancer-specific meditation apps and provide a framework for evaluating their effects.

  • JMIR Cancer 2020;6(1):e16926

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  Emotional, Social, Psychological...

  Feb 6, 2020

  A Novel Mobile Phone App Intervention With Phone Coaching to Reduce Symptoms of Depression in Survivors of Women’s Cancer: Pre-Post Pilot Study

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  Authors List:

  • Philip I Chow  
  • Fabrizio Drago  
  • Erin M Kennedy  
  • Wendy F Cohn  

  Abstract:

  Background: Psychological distress is a major issue among survivors of women’s cancer who face numerous barriers to accessing in-person mental health treatments. Mobile phone app–based interventions are scalable and have the potential to increase access to mental health care among survivors of women’s cancer worldwide. Objective: This study aimed to evaluate the acceptability and preliminary efficacy of a novel app-based intervention with phone coaching in a sample of survivors of women’s cancer. Methods: In a single-group, pre-post, 6-week pilot study in the United States, 28 survivors of women’s cancer used iCanThrive, a novel app intervention that teaches skills for coping with stress and enhancing well-being, with added phone coaching. The primary outcome was self-reported symptoms of depression (Center for Epidemiologic Studies Depression Scale). Emotional self-efficacy and sleep disruption were also assessed at baseline, 6-week postintervention, and 4 weeks after the intervention period. Feedback obtained at the end of the study focused on user experience of the intervention. Results: There were significant decreases in symptoms of depression and sleep disruption from baseline to postintervention. Sleep disruption remained significantly lower at 4-week postintervention compared with baseline. The iCanThrive app was launched a median of 20.5 times over the intervention period. The median length of use was 2.1 min. Of the individuals who initiated the intervention, 87% (20/23) completed the 6-week intervention. Conclusions: This pilot study provides support for the acceptability and preliminary efficacy of the iCanThrive intervention. Future work should validate the intervention in a larger randomized controlled study. It is important to develop scalable interventions that meet the psychosocial needs of different cancer populations. The modular structure of the iCanThrive app and phone coaching could impact a large population of survivors of women’s cancer.

  • JMIR Cancer 2020;6(1):e15750

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  Questionnaires and Research...

  Jan 17, 2020

  Awareness of the Signs, Symptoms, and Risk Factors of Cancer and the Barriers to Seeking Help in the UK: Comparison of Survey Data Collected Online and...

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  Authors List:

  • Katie Connor  
  • Briony Hudson  
  • Emily Power  

  Abstract:

  Background: Cancer is the second leading cause of death globally, causing an estimated 9.6 million deaths in 2018. Low cancer symptom awareness has been associated with poor cancer survival for all cancers combined. The Cancer Awareness Measure (CAM) is a validated, face-to-face survey used since 2008 to measure the UK public’s awareness of the symptoms and risk factors of cancer as well as the barriers to seeking help. Objective: The aim of this study is to explore whether online data collection can produce a representative sample of the UK population, compare awareness of cancer signs and risk factors and the barriers to seeking help between data collected online and face-to-face, and examine the relationships between awareness and demographic variables. Methods: Differences in awareness of cancer signs, symptoms, and risk factors among samples were explored while adjusting for demographic differences (age, gender, ethnicity, educational level, marital status, and country of residence) to distinguish the effect of data collection method. Multivariate logistic regression models were used to calculate adjusted odds ratios for recall and recognition of signs and symptoms, risk factors, and barriers to seeking help. Results: A total of 4075 participants completed the CAM, 20% (n=819) via face-to-face interviews and 80% online (n=3256; agency A: n=1190; agency B: n=2066). Comparisons of data collected using face-to-face interviews and online surveys revealed minor differences between samples. Both methods provided representative samples of the UK population with slight differences in awareness of signs, symptoms, and risk factors and frequency of help-seeking barriers reported. Conclusions: These findings support a move to online data collection for the CAM. The flexibility afforded will enable the CAM to explore a wider range of issues related to the prevention, early diagnosis, and treatment of cancer.

  • JMIR Cancer 2020;6(1):e14539

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  Mobile Apps for Cancer Care and...

  Jan 2, 2020

  Usability of a Mobile Phone App Aimed at Adolescents and Young Adults During and After Cancer Treatment: Qualitative Study

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  Authors List:

  • Signe Hanghøj  
  • Kirsten A Boisen  
  • Maiken Hjerming  
  • Abbey Elsbernd  
  • Helle Pappot  

  Abstract:

  Background: Adolescent and young adult (AYA) cancer patients are seldom involved in the process of testing cancer-related apps. As such, knowledge about youth-specific content, functionalities, and design is sparse. As a part of a co-creation process of developing the mobile phone app Kræftværket, AYAs in treatment for cancer and in follow-up participated in a usability think-aloud test of a prototype of the app. Thus, the app was initiated, created, and evaluated by AYAs with cancer experience. Objective: The aim of this study was to explore the results of a think-aloud test administered to see how the prototype of the app Kræftværket was used by AYAs in treatment for cancer and in follow-up, and to investigate the strengths and weaknesses of the app. Methods: A total of 20 AYA cancer patients aged 16 to 29 years (n=10 on treatment, n=10 in follow-up) were provided with the first version of the co-created mobile phone app Kræftværket during a 6-week test period (April-May 2018). After the test period, 15 participated in individual usability think-aloud tests. The tests were video-recorded, transcribed verbatim, and analyzed using a thematic analysis approach. Results: The thematic analysis led to the following themes and subthemes: navigation (subthemes: intuition, features, buttons, home page, profile), visual and graphic design (subthemes: overview, text and colors, photos, videos, YouTube), and usefulness (subthemes: notifications, posts, adding). The analysis identified gender differences in app utilization—female participants seemed to be more familiar with parts of the app. The app seemed to be more relevant to AYAs receiving treatment due to app functions such as tracking symptoms and searching for relevant information. Lack of notifications and incorrect counting of posts were perceived as barriers to using the app. Conclusions: Usability testing is crucial to meet the needs of the AYA target audience. AYA cancer apps should preferably be relevant, targeted, and unique, and include a tracking function and AYA-produced videos. Notifications and correct marking and ordering of posts are critical to make apps engaging and dynamic. Further research is recommended to evaluate the Kræftværket app with the input of more AYAs.

  • JMIR Cancer 2020;6(1):e15008

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  Cancer Survivorship

  Dec 20, 2019

  Evaluation of a Technology-Based Survivor Care Plan for Breast Cancer Survivors: Pre-Post Pilot Study

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  Authors List:

  • Talya Laufer  
  • Bryan Lerner
  • Anett Petrich  
  • Anna M Quinn  
  • Leah Ernst  
  • Alicin Roop  
  • Janet Knoblauch  
  • Nick C Leasure  
  • Rebecca J Jaslow  
  • Sarah Hegarty  
  • Amy Leader  
  • Andrea Barsevick  

  Abstract:

  Background: As of 2016, almost 16 million individuals were cancer survivors, including over 3.5 million survivors of breast cancer. Because cancer survivors are living longer and have unique health care needs, the Institute of Medicine proposed a survivor care plan as a way to alleviate the many medical, emotional, and care coordination problems of survivors. Objective: This pilot study for breast cancer survivors was undertaken to: (1) examine self-reported changes in knowledge, confidence, and activation from before receipt to after receipt of a survivor care plan; and (2) describe survivor preferences for, and satisfaction with, a technology-based survivor care plan. Methods: A single group pretest-posttest design was used to study breast cancer survivors in an academic cancer center and a community cancer center during their medical visit after they completed chemotherapy. The intervention was a technology-based survivor care plan. Measures were taken before, immediately after, and 1 month after receipt of the survivor care plan. Results: A total of 38 breast cancer survivors agreed to participate in the study. Compared to baseline levels before receipt of the survivor care plan, participants reported increased knowledge both immediately after its receipt at the academic center (P<.001) and the community center (P<.001) as well as one month later at the academic center (P=.002) and the community center (P<.001). Participants also reported increased confidence immediately following receipt of the survivor care plan at the academic center (P=.63) and the community center (P=.003) and one month later at both the academic center (P=.63) and the community center (P<.001). Activation was increased from baseline to post-survivor care plan at both the academic center (P=.05) and community center (P<.001) as well as from baseline to 1-month follow-up at the academic center (P=.56) and the community center (P<.001). Overall, community center participants had lower knowledge, confidence, and activation at baseline compared with academic center participants. Overall, 22/38 (58%) participants chose the fully functional electronic survivor care plan. However, 12/23 (52%) in the community center group chose the paper version compared to 4/15 (27%) in the academic center group. Satisfaction with the format (38/38 participants) and the content (37/38 participants) of the survivor care plan was high for both groups. Conclusions: This study provides evidence that knowledge, confidence, and activation of survivors were associated with implementation of the survivor care plan. This research agrees with previous research showing that cancer survivors found the technology-based survivor care plan to be acceptable. More research is needed to determine the optimal approach to survivor care planning to ensure that all cancer survivors can benefit from it.

  • JMIR Cancer 2019;5(2):e12090

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  Nutrition, Physical Activity, Healthy...

  Nov 28, 2019

  Feasibility of an Interactive Patient Portal for Monitoring Physical Activity, Remote Symptom Reporting, and Patient Education in Oncology: Qualitative Study

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  Authors List:

  • Michael Marthick  
  • Anna Janssen  
  • Birinder S Cheema  
  • Jennifer Alison  
  • Tim Shaw  
  • Haryana Dhillon  

  Abstract:

  Background: Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. Objective: This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. Methods: Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. Results: A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants’ cancer treatment status, health literacy, and background. Conclusions: Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging.

  • JMIR Cancer 2019;5(2):e15539

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  Breast Cancer

  Nov 27, 2019

  Complementary and Alternative Medicine in Patients With Breast Cancer: Exploratory Study of Social Network Forum Data

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  Authors List:

  • Béatrice Lognos  
  • François Carbonnel  
  • Isabelle Boulze Launay  
  • Sandra Bringay  
  • Estelle Guerdoux-Ninot  
  • Caroline Mollevi  
  • Pierre Senesse  
  • Gregory Ninot  

  Abstract:

  Background: Patients and health care professionals are becoming increasingly preoccupied in complementary and alternative medicine (CAM) that can also be called nonpharmacological interventions (NPIs). In just a few years, this supportive care has gone from solutions aimed at improving the quality of life to solutions intended to reduce symptoms, supplement oncological treatments, and prevent recurrences. Digital social networks are a major vector for disseminating these practices that are not always disclosed to doctors by patients. An exploration of the content of exchanges on social networks by patients suffering from breast cancer can help to better identify the extent and diversity of these practices. Objective: This study aimed to explore the interest of patients with breast cancer in CAM from posts published in health forums and French-language social media groups. Methods: The retrospective study was based on a French database of 2 forums and 4 Facebook groups between June 3, 2006, and November 17, 2015. The extracted, anonymized, and compiled data (264,249 posts) were analyzed according to the occurrences associated with the NPI categories and NPI subcategories, their synonyms, and their related terms. Results: The results showed that patients with breast cancer use mainly physical (37.6%) and nutritional (31.3%) interventions. Herbal medicine is a subcategory that was cited frequently. However, the patients did not mention digital interventions. Conclusions: This exploratory study of the main French forums and discussion groups indicates a significant interest in CAM during and after treatments for breast cancer, with primarily physical and nutritional interventions complementing approved treatments. This study highlights the importance of accurate information (vs fake medicine), prescription and monitoring of these interventions, and the mediating role that health professionals must play in this regard.

  • JMIR Cancer 2019;5(2):e12536

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  Cancer Epidemiology, Cancer...

  Nov 20, 2019

  Clinical Profiles and Survival Outcomes of Patients With Well-Differentiated Neuroendocrine Tumors at a Health Network in New South Wales, Australia:...

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  Authors List:

  • Jocelyn Reeders  
  • Vivek Ashoka Menon  
  • Anita Mani  
  • Mathew George  

  Abstract:

  Background: Neuroendocrine tumors (NETs) are a heterogeneous group of malignancies with varying and often indolent clinicobiological characteristics according to their primary location. NETs can affect any organ and hence present with nonspecific symptoms that can lead to a delay in diagnosis. The incidence of NETs is increasing in Australia; data regarding characteristics of NETs were collected from the cancer registry of Hunter New England, Australia. Objective: This study aimed to explore the clinical profiles and treatment and survival outcomes of patients with well-differentiated NETs in an Australian population. Methods: We reviewed the data of all adult patients who received the diagnosis of NET between 2008 and 2013. The clinicopathological, treatment, and follow-up data were extracted from the local Cancer Clinical Registry. We also recorded the level of remoteness for each patient by matching the patient’s residential postcode to the corresponding Australian Bureau of Statistics 2011 remoteness area category. Univariate analysis was used to find the factors associated with NET-related mortality. Survival analysis was computed. Results: Data from 96 patients were included in the study (men: 37/96, 38.5%, and women: 59/96, 61.5%). The median age at diagnosis was approximately 63 years. A higher proportion of patients lived in remote/rural areas (50/96, 52.1%) compared with those living in city/metropolitan regions (46/96, 47.9%). The most common primary tumor site was the gastroenteropancreatic tract, followed by the lung. The factors significantly associated with NET-related mortality were age, primary tumor site, surgical resection status, tumor grade, and clinical stage of the patient. At 5 years, the overall survival rate was found to be 62%, and the disease-free survival rate was 56.5%. Conclusions: Older age, advanced unresectable tumors, evidence of metastasis, and higher-grade tumors were associated with poorer outcomes. Lung tumors had a higher risk of NET-related mortality compared with other sites.

  • JMIR Cancer 2019;5(2):e12849

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  Chemotherapy and Side Effects Management

  Nov 7, 2019

  A Technology-Assisted, Brief Mind-Body Intervention to Improve the Waiting Room Experience for Chemotherapy Patients: Randomized Quality Improvement Study

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  Authors List:

  • Ting Bao  
  • Gary Deng  
  • Lauren A DeMarzo  
  • W Iris Zhi  
  • Janice L DeRito  
  • Victoria Blinder  
  • Connie Chen  
  • Qing S Li  
  • Jamie Green  
  • Eva Pendleton  
  • Jun J Mao  

  Abstract:

  Background: Patients waiting for chemotherapy can experience stress, anxiety, nausea, and pain. Acupressure and meditation have been shown to control such symptoms. Objective: This study aimed to evaluate the feasibility and effectiveness of an integrative medicine app to educate patients about these self-care tools in chemotherapy waiting rooms. Methods: We screened and enrolled cancer patients in chemotherapy waiting rooms at two Memorial Sloan Kettering Cancer Center locations. Patients were randomly assigned into an intervention arm in which subjects watched acupressure and meditation instructional videos or a control arm in which they watched a time- and attention-matched integrative oncology lecture video. Before and after watching the videos, we asked the patients to rate four key symptoms: stress, anxiety, nausea, and pain. We performed the analysis of covariance to detect differences between the two arms postintervention while controlling for baseline symptoms. Results: A total of 223 patients were enrolled in the study: 113 patients were enrolled in the intervention arm and 110 patients were enrolled in the control arm. In both groups, patients showed significant reductions in stress and anxiety from baseline (all P<.05), with the treatment arm reporting greater stress and anxiety reduction than the control arm (1.64 vs 1.15 in stress reduction; P=.01 and 1.39 vs 0.78 in anxiety reduction; P=.002). The majority of patients reported that the videos helped them pass time and that they would watch the videos again. Conclusions: An integrative medicine self-care app in the waiting room improved patients’ experiences and reduced anxiety and stress. Future research could focus on expanding this platform to other settings to improve patients’ overall treatment experiences.

  • JMIR Cancer 2019;5(2):e13217

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  Nutrition, Physical Activity, Healthy...

  Oct 11, 2019

  Mediators of a Physical Activity Intervention on Cognition in Breast Cancer Survivors: Evidence From a Randomized Controlled Trial

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  Authors List:

  • Sheri J Hartman  
  • Lauren S Weiner  
  • Sandahl H Nelson  
  • Loki Natarajan  
  • Ruth E Patterson  
  • Barton W Palmer  
  • Barbara A Parker  
  • Dorothy D Sears  

  Abstract:

  Background: Emerging research suggests that increasing physical activity can help improve cognition among breast cancer survivors. However, little is known about the mechanism through which physical activity impacts cancer survivors’ cognition. Objective: The objective of this secondary analysis examined physical and psychological function potentially linking physical activity with changes in cognition among breast cancer survivors in a randomized controlled trial where the exercise arm had greater improvements in cognition than the control arm. Methods: A total of 87 sedentary breast cancer survivors were randomized to a 12-week physical activity intervention (n=43) or control condition (n=44). Objectively measured processing speed (National Institutes of Health Toolbox Oral Symbol Digit), self-reported cognition (patient-reported outcomes measurement information system [PROMIS] cognitive abilities), PROMIS measures of physical and psychological function (depression, anxiety, fatigue, and physical functioning), and plasma biomarkers (brain-derived neurotrophic factor, homeostatic model assessment 2 of insulin resistance, and C-reactive protein [CRP]) were collected at baseline and 12 weeks. Linear mixed-effects models tested intervention effects on changes in physical and psychological function variables and biomarkers. Bootstrapping was used to assess mediation. Exploratory analyses examined self-reported cognitive abilities and processing speed as mediators of the intervention effect on physical functioning. Results: Participants in the exercise arm had significantly greater improvements in physical functioning (beta=1.23; 95% CI 2.42 to 0.03; P=.049) and reductions in anxiety (beta=−1.50; 95% CI −0.07 to −2.94; P=.04) than those in the control arm. Anxiety significantly mediated the intervention effect on cognitive abilities (bootstrap 95% CI −1.96 to −0.06), whereas physical functioning did not (bootstrap 95% CI −1.12 to 0.10). Neither anxiety (bootstrap 95% CI −1.18 to 0.74) nor physical functioning (bootstrap 95% CI −2.34 to 0.15) mediated the intervention effect on processing speed. Of the biomarkers, only CRP had greater changes in the exercise arm than the control arm (beta=.253; 95% CI −0.04 to 0.57; P=.09), but CRP was not associated with cognition; therefore, none of the biomarker measures mediated the intervention effect on cognition. Neither cognitive abilities (bootstrap 95% CI −0.06 to 0.68) nor processing speed (bootstrap 95% CI −0.15 to 0.63) mediated the intervention effect on physical function. Conclusions: Physical activity interventions may improve self-reported cognition by decreasing anxiety. If supported by larger studies, reducing anxiety may be an important target for improving self-reported cognition among cancer survivors. Clinical Trial: ClinicalTrials.gov NCT02332876; https://clinicaltrials.gov/ct2/show/NCT02332876

  • JMIR Cancer 2019;5(2):e13150

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  Innovations and Technology in Cancer...

  Sep 26, 2019

  Developing Machine Learning Algorithms for the Prediction of Early Death in Elderly Cancer Patients: Usability Study

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  Authors List:

  • Gabrielle Ribeiro Sena  
  • Tiago Pessoa Ferreira Lima  
  • Maria Julia Gonçalves Mello  
  • Luiz Claudio Santos Thuler  
  • Jurema Telles Oliveira Lima  

  Abstract:

  Background: The importance of classifying cancer patients into high- or low-risk groups has led many research teams, from the biomedical and bioinformatics fields, to study the application of machine learning (ML) algorithms. The International Society of Geriatric Oncology recommends the use of the comprehensive geriatric assessment (CGA), a multidisciplinary tool to evaluate health domains, for the follow-up of elderly cancer patients. However, no applications of ML have been proposed using CGA to classify elderly cancer patients. Objective: The aim of this study was to propose and develop predictive models, using ML and CGA, to estimate the risk of early death in elderly cancer patients. Methods: The ability of ML algorithms to predict early mortality in a cohort involving 608 elderly cancer patients was evaluated. The CGA was conducted during admission by a multidisciplinary team and included the following questionnaires: mini-mental state examination (MMSE), geriatric depression scale-short form, international physical activity questionnaire-short form, timed up and go, Katz index of independence in activities of daily living, Charlson comorbidity index, Karnofsky performance scale (KPS), polypharmacy, and mini nutritional assessment-short form (MNA-SF). The 10-fold cross-validation algorithm was used to evaluate all possible combinations of these questionnaires to estimate the risk of early death, considered when occurring within 6 months of diagnosis, in a variety of ML classifiers, including Naive Bayes (NB), decision tree algorithm J48 (J48), and multilayer perceptron (MLP). On each fold of evaluation, tiebreaking is handled by choosing the smallest set of questionnaires. Results: It was possible to select CGA questionnaire subsets with high predictive capacity for early death, which were either statistically similar (NB) or higher (J48 and MLP) when compared with the use of all questionnaires investigated. These results show that CGA questionnaire selection can improve accuracy rates and decrease the time spent to evaluate elderly cancer patients. Conclusions: A simplified predictive model aiming to estimate the risk of early death in elderly cancer patients is proposed herein, minimally composed by the MNA-SF and KPS. We strongly recommend that these questionnaires be incorporated into regular geriatric assessment of older patients with cancer.

  • JMIR Cancer 2019;5(2):e12163

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  Patient Education for Cancer

  Sep 24, 2019

  Examining the Interaction Between Medical Information Seeking Online and Understanding: Exploratory Study

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  Authors List:

  • Rei Kobayashi  
  • Masato Ishizaki  

  Abstract:

  Background: Patients seeking online information seeking on medical topics can have beneficial effects by helping them decide on treatment options and fostering better relationships with doctors. The quality of websites and processes of seeking information online have mostly been studied, with a focus on the accuracy and reliability of websites; however, few studies have examined the relationship between other aspects of quality and the processes of seeking medical information online. Objective: This exploratory study aimed to shed light on the quality of websites used for information seeking from the perspective of understanding medical information in combination with seeking it online. Methods: The study participants were 15 Japanese university students with no problem using the internet. A questionnaire survey about health literacy (47 items on a 4-point Likert scale) and information navigation skills on the internet (8 items on a 5-point Likert scale) was conducted before participants engaged in online information seeking and qualitative interviews. The students searched for information on a disease and its treatment. The websites viewed were gathered from search behavior recorded by software and browser logs. Follow-up interviews were conducted to elicit explanations from the participants about the assignments and their views of online information seeking. The explanations were evaluated by 55 health care professionals on a 3-point Likert scale and then assessed based on their comments and the participant interviews. Results: The mean age of the participants was 20.6 years (median 21; SD 1.06). All participants were able to access reliable websites with information relevant to the assignments. The mean ratings of the students’ explanations were 108.6 (median 109; range=83-134) for the disease and 105.6 (median 104; range=87-117) for its treatment. The intraclass correlation coefficients (3,k) (ICC [3,k]) were 0.84 (95% CI 0.77-0.90) and 0.95 (95% CI 0.93-0.97), indicating good and excellent, respectively. The mean of the sum of the health literacy skills was 115.1 (median 115; range=80-166) and the mean for information navigation skills was 25.9 (median 26; range=17-36), respectively. Health literacy and information navigation skills were moderately correlated (r=0.54; 95% CI 0.033-0.822; P=.04). Among the four stages of health literacy, understanding and appraising (r=0.53; 95% CI 0.025-0.820; P=.04) were moderately correlated with information navigation skills (r=0.52; 95% CI 0.013-0.816; P=.046). The participants had no difficulties operating and browsing the internet and considered medical and public institution websites to be reliable; however, due to unfamiliarity with medical terms, they had difficulties choosing a site from the results obtained and comparing and synthesizing information provided by different sites. They also looked for sites providing orderly information in plain language but provided explanations from sites that gave inadequate interpretations of information. Conclusions: This study revealed interactions between searching the internet for, and understanding, medical information by analyzing the processes of information seeking online, physicians’ evaluations and comments about the participants’ explanations, and the participants’ perceptions.

  • JMIR Cancer 2019;5(2):e13240

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