Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.

Purpose: This study aimed to examine the (age-specific) informational needs and support sources used by Adolescent and Young Adult (AYA) cancer survivors throughout their cancer trajectory and socio-demographic and clinical factors associated with most common AYA-related informational needs.

Methods: A cross-sectional questionnaire study was conducted among AYA cancer survivors (mean, 10.3 years after diagnosis, SD = 5.

Financial outcomes of adolescent and young adult cancer survivors: a longitudinal population-based registry study.

Background: The patterns and determinants of long-term income among adolescent and young adult (AYA) cancer survivors, and the differences compared with peers, have not yet been fully explored. This study investigated the long-term effects of cancer on the income of AYA cancer survivors.

Methods: The Netherlands Cancer Registry identified all AYA cancer patients (aged 18-39 years) diagnosed in 2013 and alive 5 years postdiagnosis.

AYAs' online information and eHealth needs: A comparison with healthcare professionals' perceptions.

Background: Adolescents and young adults (AYAs) diagnosed with cancer fulfill their cancer-related information needs often via the Internet. Healthcare professionals (HCPs) have a crucial role in guiding patients in finding appropriate online information and eHealth sources, a role that is often overlooked. Misperceptions of AYAs' needs by HCPs may lead to suboptimal guidance.

A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".

Background: Including the lived experience of patients in research is important to improve the quality and outcomes of cancer studies. It is challenging to include adolescents and young adults (AYAs) cancer patients in studies and this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little is known about involving these AYAs in scientific research.

Comparing Survivors of Cancer in Population-Based Samples With Those in Online Cancer Communities: Cross-sectional Questionnaire Study.

Background: Most Western countries have websites that provide information on cancer and the opportunity to participate in online cancer communities (OCCs). The number of patients with cancer that participate in these OCCs is growing. These patients are relatively easy to approach for research purposes.

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

Background: 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).

Methods: Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs.

Results: 299 AYAs (mean age 31.

Exploring Cancer Survivor Needs and Preferences for Communicating Personalized Cancer Statistics From Registry Data: Qualitative Multimethod Study.

Background: Disclosure of cancer statistics (eg, survival or incidence rates) based on a representative group of patients can help increase cancer survivors' understanding of their own diagnostic and prognostic situation, and care planning. More recently, there has been an increasing interest in the use of cancer registry data for disclosing and communicating personalized cancer statistics (tailored toward personal and clinical characteristics) to cancer survivors and relatives.

Objective: The aim of this study was to explore breast cancer (BCa) and prostate cancer (PCa) survivor needs and preferences for disclosing (what) and presenting (how) personalized statistics from a large Dutch population-based data set, the Netherlands Cancer Registry (NCR).

Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study.

Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens that differ from children and older adults. It is imperative for advances in the field of AYA oncology to pool data sources across institutions and create large cohorts to address the many pressing questions that remain unanswered in this vulnerable population.

Perceived Care and Well-being of Patients With Cancer and Matched Norm Participants in the COVID-19 Crisis: Results of a Survey of Participants in the Dutch PROFILES Registry.

Importance: As the resolution of the coronavirus disease 2019 (COVID-19) crisis is unforeseeable, and/or a second wave of infections may arrive in the fall of 2020, it is important to evaluate patients' perspectives to learn from this.

Objective: To assess how Dutch patients with cancer perceive cancer treatment and follow-up care (including experiences with telephone and video consultations [TC/VC]) and patients' well-being in comparison with a norm population during the COVID-19 crisis.

Design, Setting, And Participants: Cross-sectional study of patients participating in the Dutch Patient Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship (PROFILES) registry and a norm population who completed a questionnaire from April to May 2020.

Patients' Convergence of Mass and Interpersonal Communication on an Online Forum: Hybrid Methods Analysis.

Background: Patients are increasingly taking an active role in their health. In doing so, they combine both mass and interpersonal media to gratify their cognitive and affective needs (ie, convergence). Owing to methodological challenges when studying convergence, a detailed view of how patients are using different types of media for needs fulfillment is lacking.

Communicative aspects of decision aids for localized prostate cancer treatment - A systematic review.

Context: Despite increasing interest in the development and use of decision aids (DAs) for patients with localized prostate cancer (LPC), little attention has been paid to communicative aspects (CAs) of such tools.

Objective: To identify DAs for LPC treatment, and review these tools for various CAs.

Materials And Methods: DAs were identified through both published literature (MEDLINE, Embase, CINAHL, CENTRAL, and PsycINFO; 1990-2018) and online sources, in compliance with the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines.

Usability of an online application for reporting the burden of side effects in cancer patients.

Purpose: In the Netherlands, online patient reporting of side effects is a new phenomenon. The aim of this study was to gain insight into patients' user experiences and the benefits of the web application BijKanker ('AlongsideCancer').

Methods: Patients in seven hospitals were asked to make entries in BijKanker at least once a week.

Paying attention to relatives of cancer patients: What can we learn from their online writings?

Objective: Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online.

Methods: We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.

Analysis of Content Shared in Online Cancer Communities: Systematic Review.

Background: The content that cancer patients and their relatives (ie, posters) share in online cancer communities has been researched in various ways. In the past decade, researchers have used automated analysis methods in addition to manual coding methods. Patients, providers, researchers, and health care professionals can learn from experienced patients, provided that their experience is findable.

The Impact of Participation in Online Cancer Communities on Patient Reported Outcomes: Systematic Review.

Background: In recent years, the question of how patients' participating in online communities affects various patient reported outcomes (PROs) has been investigated in several ways.

Objectives: This study aimed to systematically review all relevant literature identified using key search terms, with regard to, first, changes in PROs for cancer patients who participate in online communities and, second, the characteristics of patients who report such effects.

Methods: A computerized search of the literature via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect was performed.

Internet use by cancer survivors: current use and future wishes.

Objective: The objective of this study was to evaluate the extent of internet access and use and patient characteristics associated with internet use. We also aimed to study when and at which sites cancer patients search for information, the self-reported effect on health care use, and patients' wishes with respect to future internet possibilities.

Materials And Methods: We drew a sample of 390 patients diagnosed with breast (n = 128), prostate (n = 96), or gynecological (n = 89) cancer or lymphoma (n = 77) in four different hospitals in the period 2002-2004, who were 65 years or younger at diagnosis.