Differences in Internet use and eHealth needs of adolescent and young adult versus older cancer patients:Results from the PROFILES registry

SIMPLE SUMMARY: The internet has become an important health information source for patients with cancer. AYAs (adolescents and young adults; 18–39 years at time of diagnosis) can be considered as digital natives; they work with the internet and related technologies in their daily lives. It is likely that AYAs are more used to using the internet, while older cancer patients might prefer former ways of information provision to obtain health-related information. The question arises whether internet use and eHealth needs of AYA cancer patients are comparable to those of older ones. By conducting a cross-sectional survey, we evaluated differences in cancer-related internet patterns between AYAs and older cancer patients (40+ years at time of diagnosis). A better understanding of differences between generations will help inform healthcare providers on how to guide cancer patients of different ages regarding cancer-related internet use. ABSTRACT: 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

Adherence to the World Cancer Research Fund/American Institute for Cancer Research recommendations for cancer prevention in adolescent and young adult (AYA) cancer survivors:results from the SURVAYA study

Purpose: For adolescent and young adult (AYA) cancer survivors with a good prognosis, having a healthy lifestyle prevents morbidity and mortality after treatment. The aim of this study was to investigate the prevalence of (un)healthy lifestyle behaviors and related determinants in AYA cancer survivors. Methods: A population-based, cross-sectional study was performed among long-term (5–20 years) AYA cancer survivors (18–39 years old at diagnosis) registered within the Netherlands Cancer Registry. Self-reported questionnaires data about health behaviors were used to calculate the 2018 World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) adherence score. Associations between the score and clinical/sociodemographic determinants of (un)healthy behaviors were investigated using logistic regression models. Results: The mean WCRF/AICR score was low to moderate, 3.8 ± 1.2 (0.5–7.0) (n = 3668). Sixty-one percent adhered to “limit the consumption of sugar sweetened drinks,” 28% to “be a healthy weight,” 25% to “fruit and vegetable consumption,” and 31% to “limit alcohol consumption.” Moderate and high adherence were associated with being a woman (ORmoderate = 1.46, 95% CI = 1.14–1.85, and ORhigh = 1.87, 95% CI = 1.46–2.4) and highly educated (ORmoderate = 1.54, 95% CI = 1.30–1.83, and ORhigh = 1.87, 95% CI = 1.46–2.4). Low adherence was associated with smoking (ORmoderate = 0.68, 95% CI = 0.50–0.92, and ORhigh = 0.30, 95% CI = 0.21–0.44) and diagnosis of germ cell tumor (ORmoderate = 0.58, 95% CI = 0.39–0.86, and ORhigh = 0.45, 95% CI = 0.30–0.69). Conclusions: Adherence to the 2018 WCRF/AICR lifestyle recommendations was low to moderate, especially regarding body weight, fruit, vegetables, and alcohol consumption. Men, current smokers, lower-educated participants, and/or those diagnosed with germ cell tumors were less likely to have a healthy lifestyle. Implications for Cancer Survivors: Health-promotion programs (e.g., age-specific tools) are needed, focusing on high-risk groups.</p

Adherence to the World Cancer Research Fund/American Institute for Cancer Research recommendations for cancer prevention in adolescent and young adult (AYA) cancer survivors:results from the SURVAYA study

Purpose: For adolescent and young adult (AYA) cancer survivors with a good prognosis, having a healthy lifestyle prevents morbidity and mortality after treatment. The aim of this study was to investigate the prevalence of (un)healthy lifestyle behaviors and related determinants in AYA cancer survivors. Methods: A population-based, cross-sectional study was performed among long-term (5–20 years) AYA cancer survivors (18–39 years old at diagnosis) registered within the Netherlands Cancer Registry. Self-reported questionnaires data about health behaviors were used to calculate the 2018 World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) adherence score. Associations between the score and clinical/sociodemographic determinants of (un)healthy behaviors were investigated using logistic regression models. Results: The mean WCRF/AICR score was low to moderate, 3.8 ± 1.2 (0.5–7.0) (n = 3668). Sixty-one percent adhered to “limit the consumption of sugar sweetened drinks,” 28% to “be a healthy weight,” 25% to “fruit and vegetable consumption,” and 31% to “limit alcohol consumption.” Moderate and high adherence were associated with being a woman (ORmoderate = 1.46, 95% CI = 1.14–1.85, and ORhigh = 1.87, 95% CI = 1.46–2.4) and highly educated (ORmoderate = 1.54, 95% CI = 1.30–1.83, and ORhigh = 1.87, 95% CI = 1.46–2.4). Low adherence was associated with smoking (ORmoderate = 0.68, 95% CI = 0.50–0.92, and ORhigh = 0.30, 95% CI = 0.21–0.44) and diagnosis of germ cell tumor (ORmoderate = 0.58, 95% CI = 0.39–0.86, and ORhigh = 0.45, 95% CI = 0.30–0.69). Conclusions: Adherence to the 2018 WCRF/AICR lifestyle recommendations was low to moderate, especially regarding body weight, fruit, vegetables, and alcohol consumption. Men, current smokers, lower-educated participants, and/or those diagnosed with germ cell tumors were less likely to have a healthy lifestyle. Implications for Cancer Survivors: Health-promotion programs (e.g., age-specific tools) are needed, focusing on high-risk groups.</p

Patient-Reported Outcomes of Accelerated Aging:A Novel Approach to Investigate Second Cancer Risk in Adolescent and Young Adult (18-39 Years) Cancer Survivors

Background: Adolescent and young adult cancer survivors (AYAs, aged 18-39 years at first diagnosis) have a higher second cancer risk. Accelerated aging is hypothesized as underlying mechanism and has been described clinically by 6 indicators; fatigue, low quality of sleep, low mood, lack of motivation, subjective memory complaints, and poor exercise tolerance. Using patient-reported outcomes, we aimed to identify clusters of accelerated aging among AYA cancer survivors and to investigate their association with second cancer development. Patients and Methods: Patient, tumor, and treatment data were obtained from the Netherlands Cancer Registry. Patient-reported clinical indicators and second cancer data were obtained from the SURVivors (5-20 years) of cancer in AYAs (SURVAYA) questionnaire study between 1999 and 2015. Latent class and multivariable logistic regression analyses were performed. Results:In total, n = 3734 AYA survivors with known second cancer status (n = 278 [7.4%] second cancers) were included. Four latent clusters were identified and named based on their clinical indicator features; (1) high accelerated aging (31.3%), (2) intermediate accelerated aging without poor exercise tolerance (15.1%), (3) intermediate accelerated aging without lack of motivation (27.4%), and (4) low accelerated aging (26.2%). AYAs in the high accelerated aging cluster were more likely to have second cancer (odds ratio: 1.6; 95% CI, 1.1-2.3) compared to the low accelerated aging cluster. Conclusion: AYAs with a higher burden of accelerated aging were more likely to develop a second cancer. Validation of the clinical indicators and how to best capture them is needed to improve (early) detection of AYAs at high risk of developing second cancer.</p

Pre-treatment fertility preservation and post-treatment reproduction in long-term survivors of adolescent and young adult (AYA) cancer

Purpose: To describe recall of fertility-related consultations and cryopreservation and to examine reproductive goals and reproduction post-treatment in long-term survivors of adolescent and young adult (AYA) (age, 18–39 years) cancer. Methods: This study included n = 1457 male and n = 2112 female long-term survivors (M age = 43–45 years; 5–22 years from diagnosis) who provided self-report. Clinical data were supplied by the Netherlands Cancer Registry.Results: Most male survivors (72.7%) recalled fertility-related consultations and 22.6% completed sperm cryopreservation. Younger age (OR = 2.8; 95%CI [2.2–3.6]), not having children (OR = 5.0; 95%CI [3.2–7.7]), testicular cancer or lymphoma/leukemia (OR = 2.8/2.5 relative to “others”), and more intense treatments (OR = 1.5; 95%CI [1.1–2.0]) were associated with higher cryopreservation rates. Time since diagnosis had no effect. Of men who cryopreserved, 12.1% utilized assisted reproductive technologies (ART). Most men (88.5%) felt their diagnosis did not affect their reproductive goals, but 7.6% wanted no (additional) children due to cancer. Half of female survivors (55.4%; n = 1171) recalled fertility-related consultations. Rates of cryopreservation were very low (3.6%), but increased after 2013 when oocyte cryopreservation became non-experimental. Of women who cryopreserved, 13.2% successfully utilized ART. Most women (74.8%) experienced no effects of cancer on reproductive goals, but 17.8% wanted no (additional) children due to cancer. Conclusions: Cryopreservation in men varied by patient/clinical factors and was very low in women, but data of more recently treated females are needed. Utilizing cryopreserved material through ART was rare, which questions its cost-effectiveness, but it may enhance survivors’ well-being. Implications for Cancer Survivors: The extent to which cryopreservation positively affects survivors’ well-being remains to be tested. Moreover, effects of cancer on reproductive goals require further attention, especially in women who refrain from having children due to cancer.</p

Pre-treatment fertility preservation and post-treatment reproduction in long-term survivors of adolescent and young adult (AYA) cancer

Purpose: To describe recall of fertility-related consultations and cryopreservation and to examine reproductive goals and reproduction post-treatment in long-term survivors of adolescent and young adult (AYA) (age, 18–39 years) cancer. Methods: This study included n = 1457 male and n = 2112 female long-term survivors (M age = 43–45 years; 5–22 years from diagnosis) who provided self-report. Clinical data were supplied by the Netherlands Cancer Registry.Results: Most male survivors (72.7%) recalled fertility-related consultations and 22.6% completed sperm cryopreservation. Younger age (OR = 2.8; 95%CI [2.2–3.6]), not having children (OR = 5.0; 95%CI [3.2–7.7]), testicular cancer or lymphoma/leukemia (OR = 2.8/2.5 relative to “others”), and more intense treatments (OR = 1.5; 95%CI [1.1–2.0]) were associated with higher cryopreservation rates. Time since diagnosis had no effect. Of men who cryopreserved, 12.1% utilized assisted reproductive technologies (ART). Most men (88.5%) felt their diagnosis did not affect their reproductive goals, but 7.6% wanted no (additional) children due to cancer. Half of female survivors (55.4%; n = 1171) recalled fertility-related consultations. Rates of cryopreservation were very low (3.6%), but increased after 2013 when oocyte cryopreservation became non-experimental. Of women who cryopreserved, 13.2% successfully utilized ART. Most women (74.8%) experienced no effects of cancer on reproductive goals, but 17.8% wanted no (additional) children due to cancer. Conclusions: Cryopreservation in men varied by patient/clinical factors and was very low in women, but data of more recently treated females are needed. Utilizing cryopreserved material through ART was rare, which questions its cost-effectiveness, but it may enhance survivors’ well-being. Implications for Cancer Survivors: The extent to which cryopreservation positively affects survivors’ well-being remains to be tested. Moreover, effects of cancer on reproductive goals require further attention, especially in women who refrain from having children due to cancer.</p

Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs):a network analysis

Purpose: Adolescent and young adult cancer survivors (AYAs) are at increased risk of long-term and late effects, and experience unmet needs, impacting their health-related quality of life (HRQoL). In order to provide and optimize supportive care and targeted interventions for this unique population, it is important to study HRQoL factors’ interconnectedness on a population level. Therefore, this network analysis was performed with the aim to explore the interconnectedness between HRQoL factors, in the analysis described as nodes, among long-term AYAs. Methods: This population-based cohort study used cross-sectional survey data of long-term AYAs, who were identified by the Netherlands Cancer Registry (NCR). Participants completed a one-time survey (SURVAYA study), including the EORTC survivorship questionnaire (QLQ-SURV111) to assess their long-term HRQoL outcomes and sociodemographic characteristics. The NCR provided the clinical data. Descriptive statistics and a network analysis, including network clustering, were performed. Results: In total, 3596 AYAs (on average 12.4 years post diagnosis) were included in our network analysis. The network was proven stable and reliable and, in total, four clusters were identified, including a worriment, daily functioning, psychological, and sexual cluster. Negative health outlook, part of the worriment cluster, was the node with the highest strength and its partial correlation with health distress was significantly different from all other partial correlations. Conclusion: This study shows the results of a stable and reliable network analysis based on HRQoL data of long-term AYAs, and identified nodes, correlations, and clusters that could be intervened on to improve the HRQoL outcomes of AYAs.</p

Genoombreed onderzoek in de spreekkamer : Ethische dilemma's door nevenbevindingen van DNA-sequencing

Whole genome sequencing (WGS) is increasingly being used in clinical practice. As a result, various healthcare professionals now encounter ethical dilemmas that were formerly confined within the genetics clinic. In addition to autonomy and well-being of both patients and their family members, which need to be balanced carefully, a societal perspective is also vital to ensure the ethically sound introduction of whole genome sequencing into daily practice. Important choices to be made are: who is eligible for whole genome sequencing; how can informed consent be sensibly obtained, when dealing with such vast quantities of genomic information; which type of information should be offered to patients; should professionals actively search for pathogenic mutations. The rise of WGS has an impact on the moral responsibilities incumbent on healthcare professionals and necessitates a comprehensive societal debate on the advent of personalized medicine

Genoombreed onderzoek in de spreekkamer : Ethische dilemma's door nevenbevindingen van DNA-sequencing

Whole genome sequencing (WGS) is increasingly being used in clinical practice. As a result, various healthcare professionals now encounter ethical dilemmas that were formerly confined within the genetics clinic. In addition to autonomy and well-being of both patients and their family members, which need to be balanced carefully, a societal perspective is also vital to ensure the ethically sound introduction of whole genome sequencing into daily practice. Important choices to be made are: who is eligible for whole genome sequencing; how can informed consent be sensibly obtained, when dealing with such vast quantities of genomic information; which type of information should be offered to patients; should professionals actively search for pathogenic mutations. The rise of WGS has an impact on the moral responsibilities incumbent on healthcare professionals and necessitates a comprehensive societal debate on the advent of personalized medicine

Limited waiting areas in outpatient clinics:: An intervention to incorporate the effect of bridging times in blueprint schedules

Background: Distancing measures enforced by the COVID-19 pandemic impose a restriction on the number of patients simultaneously present in hospital waiting areas. Objective: Evaluate waiting area occupancy of an intervention that designs clinic blueprint schedules, in which all appointments of the pre-COVID-19 case mix are scheduled either digitally or in person under COVID-19 distancing measures, whereby the number of in-person appointments is maximised. Methods: Preintervention analysis and prospective assessment of intervention outcomes were used to evaluate the outcomes on waiting area occupancy and number of in-person consultations (postintervention only) using descriptive statistics, for two settings in the Rheumatology Clinic of Sint Maartenskliniek (SMK) and Medical Oncology & Haematology Outpatient Clinic of University Medical Center Utrecht (UMCU). Retrospective data from October 2019 to February 2020 were used to evaluate the pre-COVID-19 blueprint schedules. An iterative optimisation and simulation approach was followed, based on integer linear programming and Monte Carlo simulation, which iteratively optimised and evaluated blueprint schedules until the 95% CI of the number of patients in the waiting area did not exceed available capacity. Results: Under pre-COVID-19 blueprint schedules, waiting areas would be overcrowded by up to 22 (SMK) and 11 (UMCU) patients, given the COVID-19 distancing measures. The postintervention blueprint scheduled all appointments without overcrowding the waiting areas, of which 88% and 87% were in person and 12% and 13% were digitally (SMK and UMCU, respectively). Conclusions: The intervention was effective in two case studies with different waiting area characteristics and a varying number of interdependent patient trajectory stages. The intervention is generically applicable to a wide range of healthcare services that schedule a (series of) appointment(s) for their patients. Care providers can use the intervention to evaluate overcrowding of waiting area(s) and design optimal blueprint schedules to continue a maximum number of in-person appointments under pandemic distancing measures