Dataset Information

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry.

ABSTRACT: Our aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18-39 years at time of diagnosis) and older adult cancer patients (40+ years). Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs. 299 AYAs (mean age 31.8 years) and 270 older adults (mean age 55.8 years) participated. AYAs searched significantly more often on the internet on a daily basis just before diagnosis (45% vs. 37%), right after diagnosis (71% vs. 62%) and during treatment (65% vs. 59%) compared to older adults. During follow up, there was a trend that AYAs searched less often on the internet compared to older adults (15% vs. 17%). AYAs searched more often on topics, such as alternative or complementary therapies, treatment guidelines, fertility, end of life, sexuality and intimacy, lifestyle and insurance. AYAs felt significantly better informed (75%) after searching for cancer-related information compared to older adults (65%) and had significantly less unmet needs regarding access to their own medical information (22% vs. 47%). AYAs search more on the internet on a daily basis/several times per week in the diagnosis and treatment phase than older cancer patients. They search on different topics than older adults and seems to have less unmet eHealth needs.It is important that these are easy to find and reliable.

SUBMITTER: Vlooswijk C

PROVIDER: S-EPMC8699784 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature

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Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry.

Vlooswijk Carla C Husson Olga O Krahmer Emiel J EJ Bijlsma Rhodé R Kaal Suzanne E J SEJ Sleeman Sophia H E SHE van de Poll-Franse Lonneke V LV van der Graaf Winette T A WTA Bol Nadine N van Eenbergen Mies C MC

Cancers 20211216 24

<h4>Background</h4>Our aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18-39 years at time of diagnosis) and older adult cancer patients (40+ years).<h4>Methods</h4>Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs.<h4>Results</h4>299 AYAs (mean age 31.8 years) and 270 older adults (mean age 55.8 years) participated. AYAs searched significantly ...[more]

PMID: 34944928

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Project description:(1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (?18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18-34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1-3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0-9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0-6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0-5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.

Project description:BackgroundThe purpose of this study was to identify reproductive health knowledge gaps and topics that concern adolescent and young adult (AYA) women with pediatric rheumatic diseases and their parents.MethodsData collection occurred in two cohorts. In the first cohort, young women (15-20 years old) with pediatric-onset rheumatic conditions and their parents were recruited from a single, academic pediatric rheumatology center. In the second cohort, young women (18-25 years old) with pediatric-onset rheumatic conditions were recruited from a national conference for families with pediatric rheumatic diseases. This resulted in 20 adolescents and young adults (18.3 ± 2.4 years old), and 7 parent focus group participants. Focus group leaders facilitated discussions centered on reproductive health topics that participants identified as important, their sources of knowledge, and preferences for patient education and ongoing follow-up. Data were summarized independently by 4 researchers to reduce potential bias and subsequently analyzed using rapid qualitative analysis.ResultsAll participants, regardless of diagnosis, medication, current sexual activity, or current intention to have children, expressed concern about the effect of their rheumatic condition and medications on fertility, risks to mother and child during and after pregnancy, and obtaining safe and effective contraception. Additionally, some participants discussed the burden of disease and its potential impact on motherhood. Finally, participants raised concern around the effect of disease and medication on routine reproductive health care, such as menstrual cycles, feminine self-care, and preventive exams. Three themes emerged: 1) participants had been advised to avoid unplanned pregnancy, however reported receiving inadequate explanation to support this instruction, 2) participants conceptualized reproductive health as tied to rheumatic disease management and thus suggested ways to include family members in discussion, and 3) rheumatology practitioners were not considered a resource of reproductive health information.ConclusionsYoung women and their parents reported dissatisfaction with the availability, quantity, and quality of reproductive health information they received, particularly when related to their pediatric-onset rheumatic disease. These findings provide an initial step in understanding the patient perspective of reproductive health in rheumatology, and how to address these concerns in the care of young women with rheumatic diseases.

Project description:BackgroundIn the rapidly developing use of the Internet in society, eHealth literacy-having the skills to utilize health information on the Internet-has become an important prerequisite for promoting healthy behavior. However, little is known about whether eHealth literacy is associated with health behavior in a representative sample of adult Internet users.ObjectiveThe aim of this study was to examine the association between eHealth literacy and general health behavior (cigarette smoking, physical exercise, alcohol consumption, sleeping hours, eating breakfast, eating between meals, and balanced nutrition) among adult Internet users in Japan.MethodsThe participants were recruited among registrants of a Japanese Internet research service company and asked to answer a cross-sectional Internet-based survey in 2012. The potential respondents (N=10,178) were randomly and blindly invited via email from the registrants in accordance with the set sample size and other attributes. eHealth literacy was assessed using the Japanese version of the eHealth Literacy Scale. The self-reported health behaviors investigated included never smoking cigarettes, physical exercise, alcohol consumption, sleeping hours, eating breakfast, not eating between meals, and balanced nutrition. We obtained details of sociodemographic attributes (sex, age, marital status, educational attainment, and household income level) and frequency of conducting Internet searches. To determine the association of each health behavior with eHealth literacy, we performed a logistic regression analysis; we adjusted for sociodemographic attributes and frequency of Internet searching as well as for other health behaviors that were statistically significant with respect to eHealth literacy in univariate analyses.ResultsWe analyzed the data of 2115 adults (response rate: 24.04%, 2142/10,178; male: 49.74%, 1052/2115; age: mean 39.7, SD 10.9 years) who responded to the survey. Logistic regression analysis showed that individuals with high eHealth literacy were significantly more likely to exhibit the good health behaviors of physical exercise (adjusted odds ratio [AOR] 1.377, 95% CI 1.131-1.678) and eating a balanced diet (AOR 1.572, 95% CI 1.274-1.940) than individuals with low eHealth literacy.ConclusionsWe found that some health behaviors, including exercise and balanced nutrition, were independently associated with eHealth literacy among Japanese adult Internet users.

Dataset Information

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry.

Publications

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry.

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