Employment outcomes of adolescent and young adult cancer survivors and their partners: A Dutch population-based study.

BACKGROUND: The aim of this population-based registry study was to examine the impact of cancer on employment outcomes in adolescent and young adult (AYA) survivors and their partners and associated sociodemographic and clinical characteristics. METHODS: A total of 2456 AYA cancer patients, diagnosed in 2013 and aged 18 through 39 years old, were selected from the Netherlands Cancer Registry and linked to employment data from Statistics Netherlands, from which 1252 partners of AYAs could be identified. For both patients and their partners, a control group with same age, migration background, and sex was selected. The impact (i.e., causal effect) was estimated by implementing a doubly robust difference-in-differences method, from 3 years before to 5 years after cancer diagnosis. RESULTS: Patients suffered a reduced employment probability (3.8 percentage points) and number of hours worked when employed (3.8%). This effect was larger for females, and individuals with a migration background, high tumor stage, or diagnosed with a central nervous system tumor/hematologic malignancy. In regard to employment, no significant effect could be found for the patients' partners, although a 5.5 percentage-point increase in employment probability was found in partners who were either unemployed or worked fewer than 400 hours. CONCLUSIONS: A cancer diagnosis significantly affects employment outcomes of AYA patients with cancer. Patients at risk should have access to services such as job counseling to help them return into society in the best possible way. No objective impact on partners' employment outcomes was found; however, subjective well-being was not taken into account. PLAIN LANGUAGE SUMMARY: This study estimated the causal effect of a cancer diagnosis on employment outcomes. Adolescent and young adult cancer survivors face a reduction in both employment probability and the number of hours worked when employed. Partners that were unemployed or worked the least number of hours a year before diagnosis had a 5.5 percentage-point increased employment probability, but for other partners effects are small.

Type of treatment, symptoms and patient satisfaction play an important role in primary care contact during prostate cancer follow-up: results from the population-based PROFILES registry.

BACKGROUND: With the increasing attention for the role of General Practitioners (GPs) after cancer treatment, it is important to better understand the involvement of GPs following prostate cancer treatment. This study investigates factors associated with GP contact during follow-up of prostate cancer survivors, such as patient, treatment and symptom variables, and satisfaction with, trust in, and appraised knowledge of GPs. METHODS: Of 787 prostate cancer survivors diagnosed between 2007 and 2013, and selected from the Netherlands Cancer Registry, 557 (71%) responded to the invitation to complete a questionnaire. Multivariable logistic regression analyses were performed to investigate which variables were associated with GP contact during follow- up. RESULTS: In total, 200 (42%) prostate cancer survivors had contact with their GP during follow-up, and 76 (16%) survivors preferred more contact. Survivors who had an intermediate versus low educational level (OR = 2.0) were more likely to have had contact with their GP during follow-up. Survivors treated with surgery (OR = 2.8) or hormonal therapy (OR = 3.5) were also more likely to seek follow-up care from their GP compared to survivors who were treated with active surveillance. Patient reported bowel symptoms (OR = 1.4), hormonal symptoms (OR = 1.4), use of incontinence aids (OR = 1.6), and being satisfied with their GP (OR = 9.5) were also significantly associated with GP contact during follow-up. CONCLUSIONS: Education, treatment, symptoms and patient satisfaction were associated with GP contact during prostate cancer follow-up. These findings highlight the potential for adverse side-effects to be managed in primary care. In light of future changes in cancer care, evaluating prostate cancer follow-up in primary care remains important.

Changes in internet use and wishes of cancer survivors: A comparison between 2005 and 2017.

BACKGROUND: Given the major changes in internet use for health communication, the objective of the current study was to compare the internet use and wishes of cancer survivors between 2005 and 2017. METHODS: The authors drew a sample of 390 patients in 2005 and 539 patients in 2017 who were diagnosed with breast (128 patients in 2005 and 143 patients in 2017), prostate (96 patients in 2005 and 126 patients in 2017), or gynecologic (89 patients in 2005 and 188 patients in 2017) cancer or lymphoma (77 patients in 2005 and 82 patients in 2017) in 4 different hospitals for the periods 2002 through 2004 and 2014 through 2016. These patients were sent a paper-based questionnaire that contained 45 questions regarding demographics and 4 functions of internet use: content, communication, community, and e-health. RESULTS: The response in 2017 (53%) was lower than that in 2005 (75%). Survivors browsed the internet most frequently to search for information regarding cancer shortly after being diagnosed and while waiting for treatment. There was little change noted with regard to the relative importance attached to the various subjects. In 2017, significant increases were evident with regard to finances (+33%), health care insurance (+29%), and genetics and/or heritability (+27%). The wishes expressed in 2005 by patients were realized in part in 2017. CONCLUSIONS: A significant sample of cancer survivors in the Netherlands have indicated that the internet is an important source of information regarding their illness. However, little change was evident over the past 15 years with regard to patients' priorities regarding their wishes for internet use. The wishes of users in 2005 were found to accurately reflect the internet use of the majority of patients in 2017. The results of the current study support the belief that health care professionals should expand their online services and tailor them toward the needs and wishes of their patients.

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. OBJECTIVE: The aim of this study was to obtain insight into the frequency of reported convergence, how convergence affects what posters write online, motives for posting, and the needs posters are trying to fulfill. METHODS: Using a hybrid method of content analysis and supervised machine learning, this study used naturally available data to fill this research gap. We analyzed opening posts (N=1708) of an online forum targeting cancer patients and their relatives (Kanker.nl). RESULTS: Nearly one-third of the forum opening posts contained signs of convergence in mass or interpersonal media. Posts containing mass media references disclosed less personal information and were more geared toward community enhancement and sharing experiences compared to posts without convergence. Furthermore, compared to posts without signs of convergence, posts that included interpersonal media references disclosed more personal information, and posters were more likely to ask for the experiences of fellow users to fulfill their needs. Within posts containing signs of convergence, posts including interpersonal media references reported fewer shortages of information, disclosed more information about the disease, and were more active in seeking other posters' experiences compared to posts containing mass media references. CONCLUSIONS: The current study highlights the intertwining of media platforms for patients. The insights of this study can be used to adapt the health care system toward a new type of health information-seeking behavior in which one medium is not trusted to fulfill all needs. Instead, providers should incorporate the intertwinement of sources by providing patients with reliable websites and forums through which they can fulfill their needs.

Assessing the quality and communicative aspects of patient decision aids for early-stage breast cancer treatment: a systematic review.

PURPOSE: Decision aids (DAs) support patients in shared decision-making by providing balanced evidence-based treatment information and eliciting patients' preferences. The purpose of this systematic review was to assess the quality and communicative aspects of DAs for women diagnosed with early-stage breast cancer. METHODS: Twenty-one currently available patient DAs were identified through both published literature (MEDLINE, Embase, CINAHL, CENTRAL, and PsycINFO) and online sources. The DAs were reviewed for their quality by using the International Patient Decision Aid Standards (IPDAS) checklist, and subsequently assessed to what extent they paid attention to various communicative aspects, including (i) information presentation, (ii) personalization, (iii) interaction, (iv) information control, (v) accessibility, (vi) suitability, and (vii) source of information. RESULTS: The quality of the DAs varied substantially, with many failing to comply with all components of the IPDAS criteria (mean IPDAS score = 64%, range 31-92%). Five aids (24%) did not include any probability information, 10 (48%) presented multimodal descriptions of outcome probabilities (combining words, numbers, and visual aids), and only 2 (10%) provided personalized treatment outcomes based on patients and tumor characteristics. About half (12; 57%) used interaction methods for eliciting patients' preferences, 16 (76%) were too lengthy, and 5 (24%) were not fully accessible. CONCLUSIONS: In addition to the limited adherence to the IPDAS checklist, our findings suggest that communicative aspects receive even less attention. Future patient DA developments for breast cancer treatment should include communicative aspects that could influence the uptake of DAs in daily clinical practice.

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. On logging in to the application for the first time (T1), patients were asked to complete a questionnaire on information needs and Internet use. Four months after starting their treatment (T2), they were asked to complete a second questionnaire on their experiences with BijKanker and its four functions: information; reporting side effects; communication with oncology nurses and clinicians; and data feedback. RESULTS: Ninety-nine patients logged in to BijKanker, 60 patients (61%) had completed the first questionnaire (T1) and 40 (40%) had also completed the second questionnaire (T2). In total, 1661 side effects were reported. Generally, patients experienced BijKanker as user-friendly and patients appreciated the attention given to their side effects. CONCLUSIONS: The user-centred design gives ample insight into user experiences and usability. The results provide useful starting points for improvements to the online application. We recommend to put much effort into supporting oncology nurses in the implementation of the application.

Cancer survivors' preference for follow-up care providers: a cross-sectional study from the population-based PROFILES-registry.

BACKGROUND: The best practice for the organization of follow-up care in oncology is under debate, due to growing numbers of cancer survivors. Understanding survivors' preferences for follow-up care is elementary for designing patient-centred care. Based on data from prostate cancer and melanoma survivors, this study aims to identify: 1) preferences for follow-up care providers, for instance the medical specialist, the oncology nurse or the general practitioner; 2) characteristics associated with these preferences and 3) the preferred care provider to discuss cancer-related problems. MATERIAL AND METHODS: Survivors diagnosed with prostate cancer (N = 535) and melanoma (N = 232) between 2007 and 2013 as registered in The Netherlands Cancer Registry returned a questionnaire (response rate was 71% and 69%, respectively). A latent class cluster model analysis was used to define preferences and a multinomial logistic regression analysis was used to identify survivor-related characteristics associated with these preferences. RESULTS: Of all survivors, 29% reported no preference, 40% reported a preference for the medical specialist, 20% reported a preference for both the medical specialist and the general practitioner and 11% reported a preference for both the medical specialist and the oncology nurse. Survivors who were older, lower/intermediate educated and women were more likely to have a preference for the medical specialist. Lower educated survivors were less likely to have a preference for both the medical specialist and the general practitioner. Overall, survivors prefer to discuss diet, physical fitness and fatigue with the general practitioner, and hereditary and recurrence with the medical specialist. Only a small minority favored to discuss cancer-related problems with the oncology nurse. CONCLUSION: Survivors reported different preferences for follow-up care providers based on age, education level, gender and satisfaction with the general practitioner, showing a need for tailored follow-up care in oncology. The results indicate an urgency to educate patients about transitions in follow-up care.

E-loyalty towards a cancer information website: applying a theoretical framework.

OBJECTIVE: To provide more insight into user perceptions related to e-loyalty towards a cancer information website. This is needed to assure adequate provision of high quality information during the full process of cancer treatment-from diagnosis to after care-and an important first step towards optimizing cancer information websites in order to promote e-loyalty. METHODS: Participants were cancer patients (n = 63) and informal caregivers (n = 202) that visited a website providing regional information about cancer care for all types of cancer. Subsequently, they filled out a questionnaire assessing e-loyalty towards the website and user perceptions (efficiency, effectiveness, active trust and enjoyment) based on a theoretical framework derived from the field of e-commerce. A structural equation model was constructed to test the relationships between user perceptions and e-loyalty. RESULTS: Participants in general could find the information they were looking for (efficiency), thought it was relevant (effectiveness) and that they could act upon it (active trust) and thought the visit itself was pleasant (enjoyment). Effectiveness and enjoyment were both positively related with e-loyalty, but this was mediated by active trust. Efficiency was positively related with e-loyalty. The explained variance of e-loyalty was high (R(2) = 0.70). CONCLUSIONS: This study demonstrates that the importance of user perceptions is not limited to fields such as e-commerce but is also present within the context of cancer information websites. The high information need among participants might explain the positive relationship between efficiency and e-loyalty. Therefore, cancer information websites need to foster easy search and access of information provided.

'There is still a part of me that would love to be the old me again', how do adolescents and young adults (AYA) experience cancer-related bodily changes: a phenomenological interview study.

PURPOSE: Due to the increase in both cancer incidence and overall survival rates, more adolescents and young adults (AYAs) have to live with the effects that their cancer diagnosis and following treatments have on their bodies. This qualitative phenomenological study aimed to gain more insight into the way AYAs experience these effects and how they respond to these effects. METHODS: Semi-structured interviews with a sample of 11 AYAs with an age range of 25-41 years at the time of the interview, who were diagnosed with different types of cancer, were conducted. Participants were recruited via social media and patient associations until data saturation was reached. A topic guide with open-ended questions about lived experiences was used. Interpretative phenomenological analysis (IPA) was performed to analyse the transcripts. RESULTS: We identified six Group Experiential Themes based on different ways AYAs experience their bodies: (1) self-conscious body, (2) vulnerable body, (3) adapting to the body, (4) uncontrollable body, (5) remembering the body and (6) shared bodies. CONCLUSION: This study offers in-depth insight into the bodily experiences of AYAs after cancer and how they respond to these changes from a phenomenological point of view. IMPLICATIONS FOR CANCER SURVIVORS: This knowledge could be beneficial to provide more guidance for AYAs during and after their illness, by focussing on personalised psychological (after)care.

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. Clinical data of the selected AYA patients were linked to individual, administrative real-world labor market data of Statistics Netherlands. The control group consisted of a random sample of individuals of the same age, sex, and migration background without cancer. Data on 2434 AYA cancer patients and 9736 controls were collected annually from 2011 until 2019. Changes in income level were measured and compared with the control group using difference-in-difference regression models. RESULTS: AYA cancer survivors experience, on average, an 8.5% decrease in annual earnings, relative to the control population. The effects are statistically significant and permanent (P < .01). Younger AYAs (those aged 18-25 years 15.5% income reduction), married cancer survivors (12.3%), females (11.6%), those diagnosed with stage IV disease (38.1%), and central nervous system (15.7%) cancer patients experienced the largest decline in income, on average, relative to controls, all else constant. CONCLUSION: Although dependent on the sociodemographic and clinical characteristics, a cancer diagnosis at AYA age has significant implications on the income of cancer patients. Awareness of vulnerable groups and the development of policies to mitigate the financial impact of cancer are critical.

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. We aimed to examine the extent to which AYAs' online information and eHealth needs corresponded with HCPs' perceptions of these needs. METHODS: Two cross-sectional online surveys (AYAs, n = 299; HCP, n = 80) on online information and eHealth needs were conducted. HCPs provided indications of their perceptions of AYA's needs. RESULTS: AYAs reported significantly more online information needs compared with HCPs' perceptions regarding: survival rates (AYA = 69%, HCP = 35%, p < 0.001), treatment guidelines (AYA = 65%, HCP = 41%, p < 0.001), return of cancer (AYA = 76%, HCP = 59%, p = 0.004), "what can I do myself" (AYA = 68%, HCP = 54%, p = 0.029), and metastases (AYA = 64%, HCP = 50%, p = 0.040). Significantly more unmet eHealth needs were reported by AYAs compared with HCPs relating to access to own test results (AYA = 25, HCP = 0%, p < 0.001), request tests (AYA = 30%, HCP = 7%, p < 0.001), medical information (AYA = 22%, HCP = 0%, p = 0.001), e-consult with nurses (AYA = 30%, HCP = 10%, p < 0.001), e-consult with physicians (AYA = 38%, HCP = 13%, p = 0.001), and request prescriptions (AYA = 33%, HCP = 21%, p = 0.009). CONCLUSION: AYAs' online information and eHealth needs are partially discrepant with the impression HCPs have, which could result in insufficient guidance related to AYAs' needs. AYAs and HCPs should get guidance regarding where to find optimal information in a language they understand. This may contribute to AYAs' access, understanding, and satisfaction regarding online information and eHealth.

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. OBJECTIVE: The objective of this study is to determine the differences and similarities between survivors of cancer in population-based samples and survivors participating in OCCs who use the internet in relation to their illness. METHODS: In 2017, we drew a sample of 539 population-based patients and 531 OCC patients. The population-based patients were sent a paper-based questionnaire, and the OCC patients were sent the same questionnaire on the web. In the questionnaire, we asked patients about their sociodemographics, internet use, sources of information, media use, and wishes regarding future internet use for health care-related purposes, and the effect of internet use on their health care consumption. RESULTS: The response rate of population-based internet users was 47% (233/496), and that of the OCC group was 40.3% (214/531). The OCC group had a significantly higher education level (P<.001), was younger (P<.001), had more survivors that were employed (P<.001), and attached greater importance to the internet (171/214, 79.9% vs 126/233, 54.1%; P<.001) and fellow survivors (107/214, 50% vs 60/233, 25.8%; P<.001). Compared with the population-based group, the OCC group reported more intensive internet use immediately after diagnosis, during treatment, and during follow-up (P<.001 in each case). There were similarities in terms of the relative importance that survivors attach to the various sources of information, the topics on which they seek information, and their wishes for future eHealth possibilities. The OCC group reported a greater need to participate in a web-based class or chat with others (92/214, 43% vs 44/233, 18.9%). CONCLUSIONS: We conclude that survivors who are members of an OCC are not representative of survivors of cancer in general. There are significant differences in sociodemographic characteristics, internet use during their treatment journey, internet search frequency during their cancer journey, and participation wishes. Using web-based information and communication can support shared decision-making and may facilitate the active participation of patients during their treatment. For research purposes, it is important to take the bias in OCC groups into account.

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. However, by including their lived experiences during multiple phases of research, the quality of the study improves and therefore also the healthcare and quality of life of this unique patient group. We first aimed to document experiences of AYAs and researchers with AYA involvement initiatives using the Involvement Matrix and the nine phases of the research cycle. Second, we aimed to map the (expected) challenges and recommendations, according to patients and researchers, for AYA involvement in each research phase. METHODS: Thirteen semi-structured qualitative interviews were conducted with AYAs and researchers from February 2020 to May 2020. A thematic analysis codebook with a critical realistic framework was used to analyze the data. RESULTS: AYAs and researchers were predominantly positive about AYA involvement within six of the nine phases of research: identify and prioritize topics, develop study design, disseminate information, implement, and evaluate findings. Not all respondents were positive about AYA involvement in the following three phases: formulate research questions, conduct research, and analysis and interpretation. However, few respondents had experience with AYA-researcher collaborations in multiple phases of the research cycle. Last, the results indicate the importance of adding a role (practical support) and two phases (grant application and recruitment) to the Involvement Matrix. CONCLUSION: Our results show the added value of AYA (with a UPCP) involvement within scientific research projects. We recommend researchers to actively think about the level and phase of collaboration prior to each research project, by involving and brainstorming with AYAs at the conception and throughout research projects. Besides, to enhance fruitful participation, we suggest thoroughly discussing the pros and cons of collaboration for each phase together with AYAs via the proposed Involvement Matrix to support transparency. We recommend to report experiences, choices, and results of AYA involvement.

Currently, more and more collaborations exist between patients and researchers in scientific research projects. Patient-research partnerships give patients the opportunity to add value to research by sharing their own experiences. Besides, patients themselves feel heard in their needs and are empowered. However, inclusion of young patients, like young adults with a cancer diagnosis, remains limited in research itself and specifically in the form of active involvement and collaboration initiatives. Thereby little is known about their age-specific problems and needs. This seems especially the case in young patient populations like adolescents and young adults (AYAs) with cancer who have a poor or uncertain prognosis. By analyzing the experiences of AYAs and researchers, this study aimed to unravel if collaboration within research projects is possible, and what defines the added value of such collaboration. Our study shows that researchers, as well as AYAs, think positively about collaborating during most phases of scientific research projects, even for challenging populations like AYAs with an uncertain and/or poor prognosis. Creating awareness of the possibilities of AYA involvement might increase involvement initiatives in future projects. This can be done using the Involvement Matrix. This is an existing tool which we further expanded according to our findings. Researchers and AYAs can fill in this tool (a table) together to plan, structure and discuss their collaboration. Our findings can be validated and might serve as a starting point for other patient groups.

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

To take cancer survivorship research to the next level, it's important to gain insight in trajectories of changing patient-reported outcomes and impaired recovery after cancer. This is needed as the number of survivors is increasing and a large proportion is confronted with changing health after treatment. Mechanistic research can facilitate the development of personalized risk-stratified follow-up care and tailored interventions to promote healthy cancer survivorship. We describe how these trajectories can be studied by taking the recently extended Dutch population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry as an example. PROFILES combines longitudinal assessment of patient-reported outcomes with novel, ambulatory and objective measures (eg, activity trackers, blood draws, hair samples, online food diaries, online cognitive tests, weighing scales, online symptoms assessment), and cancer registry and pharmacy databases. Furthermore, we discuss methods to optimize the use of a multidomain data collection-like return of individual results to participants, which may improve not only patient empowerment but also long-term cohort retention. Also, advanced statistical methods are needed to handle high-dimensional longitudinal data (with missing values) and provide insight into trajectories of changing patient-reported outcomes after cancer. Our coded data can be used by academic researchers around the world. Registries like PROFILES, which go beyond boundaries of disciplines and institutions, will contribute to better predictions of who will experience changes and why. This is needed to prevent and mitigate long-term and late effects of cancer treatment and to identify new interventions to promote health.

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). METHODS: To elicit survivor needs and preferences for communicating personalized NCR statistics, we created different (non)interactive tools visualizing hypothetical scenarios and adopted a qualitative multimethod study design. We first conducted 2 focus groups (study 1; n=13) for collecting group data on BCa and PCa survivor needs and preferences, using noninteractive sketches of what a tool for communicating personalized statistics might look like. Based on these insights, we designed a revised interactive tool, which was used to further explore the needs and preferences of another group of cancer survivors during individual think-aloud observations and semistructured interviews (study 2; n=11). All sessions were audio-recorded, transcribed verbatim, analyzed using thematic (focus groups) and content analysis (think-aloud observations), and reported in compliance with qualitative research reporting criteria. RESULTS: In both studies, cancer survivors expressed the need to receive personalized statistics from a representative source, with especially a need for survival and conditional survival rates (ie, survival rate for those who have already survived for a certain period). Personalized statistics adjusted toward personal and clinical factors were deemed more relevant and useful to know than generic or average-based statistics. Participants also needed support for correctly interpreting the personalized statistics and putting them into perspective, for instance by adding contextual or comparative information. Furthermore, while thinking aloud, participants experienced a mix of positive (sense of hope) and negative emotions (feelings of distress) while viewing the personalized survival data. Overall, participants preferred simplicity and conciseness, and the ability to tailor the type of visualization and amount of (detailed) statistical information. CONCLUSIONS: The majority of our sample of cancer survivors wanted to receive personalized statistics from the NCR. Given the variation in patient needs and preferences for presenting personalized statistics, designers of similar information tools may consider potential tailoring strategies on multiple levels, as well as effective ways for providing supporting information to make sure that the personalized statistics are properly understood. This is encouraging for cancer registries to address this unmet need, but also for those who are developing or implementing personalized data-driven information tools for patients and relatives.

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. We will create a nationwide infrastructure (COMPRAYA) for research into the incidence, predictive/prognostic markers, and underlying mechanisms of medical and psychosocial outcomes for AYA between 18-39 years diagnosed with cancer. A prospective, observational cohort of (n = 4000), will be established. Patients will be asked to (1) complete patient-reported outcome measures; (2) donate a blood, hair, and stool samples (to obtain biochemical, hormonal, and inflammation parameters, and germline DNA); (3) give consent for use of routinely archived tumor tissue and clinical data extraction from medical records and registries; (4) have a clinic visit to assess vital parameters. Systematic and comprehensive collection of patient and tumor characteristics of AYA will support the development of evidence-based AYA care programs and guidelines.

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 31.8 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.

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. Main Outcomes and Measures: Logistic regression analysis assessed factors associated with changes in cancer care (treatment or follow-up appointment postponed/canceled or changed to TC/VC). Differences in quality of life, anxiety/depression, and loneliness between patients and age-matched and sex-matched norm participants were evaluated with regression models. Results: The online questionnaire was completed by 4094 patients (48.6% response), of whom most were male (2493 [60.9%]) and had a mean (SD) age of 63.0 (11.1) years. Of these respondents, 886 (21.7%) patients received treatment; 2725 (55.6%) received follow-up care. Treatment or follow-up appointments were canceled for 390 (10.8%) patients, whereas 160 of 886 (18.1%) in treatment and 234 of 2725 (8.6%) in follow-up had it replaced by a TC/VC. Systemic therapy, active surveillance, or surgery were associated with cancellation of treatment or follow-up appointment. Younger age, female sex, comorbidities, metastasized cancer, being worried about getting severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), and receiving supportive care were associated with replacement of a consultation with a TC/VC. Patients and norm participants reported that the COVID-19 crisis made them contact their general practitioner (852 of 4068 [20.9%] and 218 of 979 [22.3%]) or medical specialist/nurse (585 of 4068 [14.4%] and 144 of 979 [14.7%]) less quickly when they had physical complaints or concerns. Most patients who had a TC/VC preferred a face-to-face consultation, but 151 of 394 (38.3%) were willing to use a TC/VC again. Patients with cancer were more worried about getting infected with SARS-CoV-2 compared with the 977 norm participants (917 of 4094 [22.4%] vs 175 of 977 [17.9%]). Quality of life, anxiety, and depression were comparable, but norm participants more often reported loneliness (114 of 977 [11.7%] vs 287 of 4094 [7.0%]) than patients with cancer (P = .009). Conclusions and Relevance: Among patients with cancer in the Netherlands, 1 in 3 reported changes in cancer care in the first weeks of the COVID-19 crisis. Long-term outcomes need to be monitored. The crisis may affect the mental well-being of the general population relatively more than that of patients with cancer.

Analyzing Empowerment Processes Among Cancer Patients in an Online Community: A Text Mining Approach.

BACKGROUND: Peer-to-peer online support groups and the discussion forums in these groups can help patients by providing opportunities for increasing their empowerment. Most previous research on online empowerment and online social support uses qualitative methods or questionnaires to gain insight into the dynamics of online empowerment processes. OBJECTIVE: The overall goal of this study was to analyze the presence of the empowerment processes in the online peer-to-peer communication of people affected by cancer, using text mining techniques. Use of these relatively new methods enables us to study social processes such as empowerment on a large scale and with unsolicited data. METHODS: The sample consisted of 5534 messages in 1708 threads, written by 2071 users of a forum for cancer patients and their relatives. We labeled the posts in our sample with 2 types of labels: labels referring to empowerment processes and labels denoting psychological processes. The latter were identified using the Linguistic Inquiry and Word Count (LIWC) method. Both groups of labels were automatically assigned to posts. Automatic labeling of the empowerment processes was done by text classifiers trained on a manually labeled subsample. For the automatic labeling of the LIWC categories, we used the Dutch version of the LIWC consisting of a total of 66 word categories that are assigned to text based on occurrences of words in the text. After the automatic labeling with both types of labels, we investigated (1) the relationship between empowerment processes and the intensity of online participation, (2) the relationship between empowerment processes and the LIWC categories, and (3) the differences between patients with different types of cancer. RESULTS: The precision of the automatic labeling was 85.6%, which we considered to be sufficient for automatically labeling the complete corpus and doing further analyses on the labeled data. Overall, 62.94% (3482/5532) of the messages contained a narrative, 23.83% (1318/5532) a question, and 27.49% (1521/5532) informational support. Emotional support and references to external sources were less frequent. Users with more posts more often referred to an external source and more often provided informational support and emotional support (Kendall τ>0.2; P<.001) and less often shared narratives (Kendall τ=-0.297; P<.001). A number of LIWC categories are significant predictors for the empowerment processes: words expressing assent (ok and yes) and emotional processes (expressions of feelings) are significant positive predictors for emotional support (P=.002). The differences between patients with different types of cancer are small. CONCLUSIONS: Empowerment processes are associated with the intensity of online use. The relationship between linguistic analyses and empowerment processes indicates that empowerment processes can be identified from the occurrences of specific linguistic cues denoting psychological processes.

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.nl), into three main categories: 'Disease', 'Well-being' and 'Other subjects'. In addition, we analysed five websites (from five countries) for which content they provide that is relevant for relatives. RESULTS: Our analysis showed that across cancer types, relatives share online information and emotions. Quantitative analysis showed that they mainly write about topics related to their own well-being (blog posters: 45% of the posts and group posters 64%). Blog posters found the disease-related topics more important than the group posters (45% and 29%). CONCLUSIONS: This study has shown that relatives share different kinds of user-generatedcontent related to their own situation. This could be a valuable resource for further research into the needs of relatives, and a very useful source for identification of emotional and informational topics. PRACTICE IMPLICATIONS: It is crucial that relatives are enabled to occupy their own space in the disease-and-treatment process appropriate to their needs and to help avoid caregiver burden.