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Over the past decades, the recognition of the distinctive challenges in care provision to the adolescent and young adult (AYA) cancer population has increased in several countries.1 AYAs are defined as those aged 15–39 years at initial cancer diagnosis according to the United States' National Cancer Institute (NCI). However, the NCI also states that this age range can be flexibly applied, depending on the type of healthcare delivery system for example.2 Although the AYA age group spans both the traditional pediatric and adult healthcare systems, it does not fit well into either with respect to meeting their clinical needs.1,3–5 Based on international initiatives, like Bleyer and colleagues' research and the landmark report of the National Cancer Institute/LIVESTRONG's Progress Review Group, highlighting the lack of improvement in AYAs' survival rates (compared to childhood and adult cancer survivors), recommendations to improve care for and outcomes of AYAs were formulated.6,7 Over time, these initiatives have been further supported by the start of working groups, task forces, (inter)national AYA organizations and committees, and a journal solely devoted to AYAs with cancer.1,8–12 In addition, national AYA-specific care programs have been developed in numerous countries, based on the local needs and available resources.5,8,11
In the Netherlands, age-specific care for AYAs was initiated by the national AYA “Young & Cancer” Care Network in 2016. It was kick started by a manifest in which AYAs and healthcare professionals (HCPs) raised their voice, after which the foundation was laid for age-specific care based on the input of AYAs and HCPs.13,14 The self-identified needs of this population include, among others, dealing with challenges in body image, sexuality, relationships with family and friends (including partners), fertility, education and employment, and financial stressors.14 Currently, more than half of the Dutch hospitals are officially providing age-specific care and this number is still increasing, leading to improved national coverage.15 The network is aimed at a constant development of care, education and research, which has led to an anamnesis tool built in the electronic patient files, quality standards, care pathways for the implementation of care, and a training plan for HCPs, including education, intervision, and e-learning modules. The care pathways and HCPs' expertise, including specialists, nurses, and paramedics, remain up-to-date through the integration of research.12,14–16
Despite growing (inter)national awareness and appreciation, age-specific care was and still is not always self-evident and accepted as standard of care for this population.5,12,17,18 This may lead to unmet (supportive care) needs and poor outcomes (e.g., regarding fertility, education and work, and quality of life). The systematic reviews of Bibby et al. and Galán et al. showed that commonly reported needs of AYAs relate to communication and information delivery, fertility, psychological support, social support, and contact with other AYA cancer patients.19,20 Important to note is that, up till now, most studies have focused on reporting the (unmet) needs of AYAs during the first months or years following diagnosis only.19,21,22
Most AYAs survive their initial cancer (>80%) and many long-term AYA cancer survivors, who were diagnosed before the recent developments in age-specific care, may have never had the opportunity to receive this type of care. Looking back now, it is unknown if these long-term survivors have had a need for age-specific care at all, and if so, regarding which topics they needed it. It is expected that some of them have had a need for age-specific care, but differences may exist based on clinical and sociodemographic characteristics. Using the AYA cancer survivor population's experiences as input, current age-specific care for AYAs can be re-evaluated, refined, and better attuned to future AYA cancer patients’ needs and wishes. Therefore, the aims of this retrospective, population-based, observational, cross-sectional cohort study are to examine (1) whether there has been a need for age-specific care among long-term AYA cancer survivors in the Netherlands; (2) which AYA cancer survivors have had a need for age-specific care (based on sociodemographic and clinical characteristics); and (3) regarding which topics there has been a need for age-specific care.
METHODS Data collectionThis paper presents a secondary data analysis of the SURVAYA study data. The main aim of the retrospective, observational cohort study was to examine the prevalence, risk factors, and mechanisms of impaired health outcomes among a population-based sample of AYA cancer survivors (Clinical trials registration: NCT05379387).23 A detailed description of the methods used in the SURVAYA study has been reported previously.24 In short, all AYA cancer survivors diagnosed with their first invasive tumor between 1999 and 2015, at the age of 18–39 years, in one of the nine participating cancer centers, were selected from the Netherlands Cancer Registry (NCR). The population-based NCR collects disease- and treatment-specific data of all cancer patients in the Netherlands since 1989.25 In order to check whether AYAs were still alive at the moment of invitation and to obtain up-to-date addresses, records were linked to and checked with the Dutch municipal records database.
All eligible AYAs received an invitation for participation in the SURVAYA study from their (former) medical specialist via PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship). PROFILES is a registry to study the impact of cancer (treatment) from a population-based cohort of survivors.26 After signing the informed consent form, the questionnaire could be completed either online or on paper.24 After completion, the questionnaire data were linked to the clinical data of the NCR to finalize the dataset. The Institutional Review Board of the Antoni van Leeuwenhoek—Netherlands Cancer Institute approved this study (IRBd18122) and the NCR approved linkage, access and utilization of their clinical data.
Measures Sociodemographic characteristicsSex and age at diagnosis were available from the NCR. Marital status, educational level (highest level achieved), and living status were self-reported by the participants.
Clinical characteristicsTime since diagnosis, type of cancer (classified according to the Third International Classification of Diseases for Oncology (ICDO-3)), type of primary treatment and tumor stage (classified according to TNM or Ann Arbor Code) were available from the NCR.
Need for age-specific careParticipants were asked to answer the following question: “Would you have needed age-specific (AYA) care due to your cancer”? with answering options “yes,” “no,” or “do not know.” In addition, they had the option to specify their need(s) in an open text box.
Data analysisAnswers to the question “Please specify your age-specific (AYA) needs” were categorized according to a framework based on the Dutch AYA “Young & Cancer” Care Network's AYA anamnesis for clinical practice (Figure 1).14 Two researchers (S.H.M.J. and C.V.) independently categorized all open text responses using an inductive approach, thus allowing for new (sub) topics to arise based on the data. Multiple topics could be selected per open text response. A third researcher (O.H.) was consulted to discuss deviations and come to an agreement. When consensus was reached, S.H.M.J. finalized the categorization.
Enlarge this image.FIGURE 1. Dutch AYA “Young & Cancer” Care Network's AYA anamnesis for clinical practice. Note: the AYA anamnesis tool for clinical practice is used to facilitate the discussion between the HCP and the AYA during the consultation. Each topic represents a need with questions and possible interventions.
Statistical analyses were performed using IBM SPSS Statistics version 25 (SPSS Inc.). Two-sided p-values of <0.05 were considered statistically significant. Descriptive statistics were used to characterize the study population. Chi-square and ANOVA tests (including Games–Howell post hoc test) were carried out to make comparisons between those with, without and who do not know whether they have had a need for age-specific care, on sociodemographic and clinical characteristics.
RESULTSThe NCR identified 17.098 AYA cancer survivors, of which 11.296 were invited for participation. Reasons to exclude patients from participation were as follows: missing up-to-date information on vital status and/or address, not having a histological diagnosis, having a very good prognosis or extreme rare tumor type at this age (i.e., might have been unclear to the AYA that one is diagnosed with cancer) as defined by Vlooswijk et al.,24 and not having permission of the hospital to invite the patient for study participation, that is, only inviting AYAs with certain tumor types. Eventually, 35.5% of the invited AYAs completed the questionnaire, leading to an observational cohort of 4.010 AYA cancer survivors. Of these, 21 AYAs did not complete the question on whether they have had a need for age-specific care and were therefore excluded from further analysis (final cohort N = 3.989).
AYA cancer survivors' need for age-specific careTable 1 shows the characteristics of the included AYA cancer survivors classified according to their reported need for age-specific care. The total study population is described in Table A1. The participants were on average 12.4 years post-diagnosis, and the most common cancer types included breast cancer (23.5%), germ cell tumor (17.3%), and lymphoid hematological malignancy (14.7%) (Table A1). Of all AYAs, 33.5% expressed a need for age-specific care, while 41.2% expressed no need and 25.3% did not know whether they have had a need for age-specific care (Table 1).
TABLE 1 Demographic and clinical characteristics of all included AYA cancer survivors per age-specific care need group.
Note: n.a., not applicable due to low numbers. The statistically significant values (p < 0.05) are in bold.
aMultiple options possible.
*Post hoc test: Need vs. No need (p < 0.001); Need vs. Don't know (p = 0.001); No need vs. Don't know (p = 0.122)
Post hoc test: Need vs. No need (p < 0.001); Need vs. Don't know (p = 0.467); No need vs. Don't know (p = 0.024).
Survivors who have had a need for age-specific care were significantly more often female, higher educated, younger at diagnosis, and treated with chemotherapy, radiotherapy or hormone therapy, compared to those without a need and those who did not know. Those who were unsure about their need were more often without a partner and diagnosed with tumor stages III and IV, compared to those with and without a need.
Insight into the topics of AYAs' needsOf those with a need for age-specific care, 1.197 AYA cancer survivors (89.5%) provided an open text response to give further insight into their needs. All (sub) topics are described in more detail and supported by quotes to provide more insight in their meaning in Table 2.
TABLE 2 Quotes of AYA cancer survivors per (sub) topic.
Most often mentioned topics of the AYA anamnesis include disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), and work and reintegration (10.5%) (Figure 2A and Table 2). Two subtopics emerged within the topic friends, including peers with cancer (79.0%) and social life (16.2%) (Figure 2B). A clear distinction emerged between the need for contact with peers with cancer, while on the contrary, AYAs had trouble with staying connected to their “healthy” peers (Table 2). The subtopic social life represents the society to which AYAs want to be part of (again), which goes beyond friends or family only, while simultaneously, some feel misunderstood by their surroundings. Another topic with two clear subtopics is illness and treatment, including aftercare and rehabilitation (38.5%) and short- and long-term effects (50.8%) (Figure 2B). AYAs wanted information about what to expect after treatment and how to recover, as well as for check-ups and aftercare. This is in line with the second subtopic focusing specifically on the short- and long-term effects, like early menopause, fatigue or a lack of energy and lymphedema, which were often mentioned (Table 2).
Enlarge this image.FIGURE 2. (A) The need for age-specific care per (sub) topic. * Friends subtopics include peers with cancer and social life. ** Illness and treatment subtopics include aftercare and rehabilitation, and short- and long-term effects. *** Overarching care and life subtopics include information and guidance, and life after cancer. Note: As some terms did not fit into one topic only, they were included into multiple topics. This was done for physiotherapy (sport and movement, and aftercare and rehabilitation) and the governmental institute for employee-specific insurances (mortgages and insurances, work and reintegration, and benefits and compensations). Some topics are very closely related (e.g., expressing a need for psychological support for one's children and partner. Although these needs were categorized within the family and children topic only, they also link with the topic emotion). To avoid over-categorization, these answers were categorized at one topic only. Table 2 shows several quotes as examples. An open text response can be categorized for the topic itself, in addition to the subtopic. (B) The need for age-specific care per subtopic of friends; illness and treatment; and overarching care and life.
Care not tailored was often mentioned explicitly (13.8%) and was therefore added as a separate topic. Examples include the experiences of AYAs that information or care was not tailored to their situation as a young cancer patient or that HCPs did not know how to communicate with them. AYAs could not identify themselves with the provided information or care: for example, it was based on older adults or they were treated as children as HCPs talked to their parents instead of to them. They had a hard time finding resources that were tailored to their specific situation, that is, age or tumor type at this young age (Table 2).
Many AYAs (27.7%) included open text responses that did not belong to any of the pre-existing topics solely. A new topic was therefore created (overarching care and life) with two new subtopics, including information and guidance (32.8%) and life after cancer (28.3%) (Figure 2B). As with specific topics, AYAs expressed their need for more information and guidance. However, many needs are topic-transcending and span a wider phase than solely diagnosis, treatment or follow-up for example. In the second subtopic, a clear interest in life after cancer was stated, representing the restart/rest of their life, their future and everyday life (Table 2).
Least often mentioned topics include palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%).
Additional insights of those without a need for age-specific care or who do not knowAlthough the open text box was intended for those with a need for age-specific care to specify their needs, it was also used by some of those who did not have a need (N = 76) or who did not know whether they have had a need (N = 116). Most open text responses of those without a need for age-specific care were categorized as overarching care and life (85.5%), which was mainly about being satisfied with the received care or that the cancer has had a very minimal impact on their life. Similarly, of those who did not know whether they have had a need, 66.4% was categorized as overarching care and life. It mainly included unfamiliarity with the term “age-specific (AYA) care,” being satisfied with the received care or that it was already a long time ago.
DISCUSSIONWith almost 4000 AYA cancer survivors and a mean time from diagnosis of over 12 years, this retrospective, population-based, observational cohort study shows that, in hindsight, many AYA cancer survivors would have loved to have received age-specific care in the Netherlands. Most often mentioned topics include disease and treatment, work and reintegration, fertility and pregnancy, overarching care and life, care not tailored, emotions, family and children, and friends, while palliative care, complementary care, spirituality, death, and late effects were hardly mentioned. AYAs with age-specific care needs were significantly more often female, higher educated, younger at diagnosis, and treated with chemotherapy, radiotherapy or hormone therapy. Those who have had no need or did not know if they have had a need, mainly expressed their satisfaction with the received care, the minimal impact of cancer on their lives, their unfamiliarity with the term “age-specific (AYA) care” or that it has already been a long time ago.
Most studies so far have only focused on the first few months following diagnosis and have smaller sample sizes compared to our study.19,21,22 When survivors reflected on their experience they still remembered missing age-specific care, some regarding multiple topics (Table 2), and some even still have unmet care needs more than 5 years after diagnosis. On average, more than one topic per person was categorized, reflecting the wide range of milestones that are so representative for this young population. The most frequently mentioned topics were in line with those from international literature.19,21,22,27–32 Differences in the prevalence of a topic, however, may be caused by the inclusion of different study populations (tumor types, age ranges), study designs, response options (thick boxes with provided topics or open text boxes), and (national) healthcare systems.
Both Hilgendorf et al. and Jin et al. describe the need for structured aftercare, which is in line with our results and reflected in the newly emerged subtopic aftercare and rehabilitation (Table 2).32,33 Both the need for information and support and the need for more check-ups after cancer treatment belong to this subtopic. Hilgendorf recommends that each AYA survivor receives a treatment summary, a survivorship care plan and education based on the AYA's age, which could help them to transition from active treatment to survivorship.32,33
Also, in our study, many AYAs either had concerns about their fertility or they had to give up their wish of bearing a child and struggled emotionally. It was expected that this theme would be mentioned often, as it represents one of the developmental milestones which is characteristic for the AYA age range specifically (Table 2). Infertility or concerns about one's fertility are previously described in AYA literature, including potential barriers at the level of the AYA, HCP, institute and policy, as well as the effect it might have on psychological outcomes (i.e., distress, depression and health-related quality of life).34–36 Although effective interventions are limited, Norton et al. describe the supporting role of nurses as a potential facilitator for fertility communication and support.34,35
As described earlier, a new subtopic emerged based on the need for contact with peers with cancer, which is consistent with previous literature showing a clear need to connect with peers who have been diagnosed with cancer as well.19,31,37,38 In the study of Zebrack et al., AYAs expressed the need of meeting other AYA cancer survivors as well and even ranked its importance higher than the support from family and friends.31 This might be explained by the idea that peers with cancer really understand the situation of the AYA and they can relate (i.e., similar circumstances, concerns, and interests37), and provide a different type of support than family and friends, which is not age-specific per se.
The theme work and reintegration (10.5%) was more frequently mentioned than education (2.1%). This might be explained by the representation of mostly AYAs who were 25+ years of age at diagnosis, assuming that most of them finished their education and were trying to start their career/find work at time of diagnosis. However, as only few may have established career patterns, a cancer diagnosis may make it difficult to continue their work (afterwards).39–41 Timely involvement of an occupational health physician may support AYAs in meeting work-related needs.39,42
The major impact one's AYA cancer diagnosis can have on their partner, children, and family as a whole, is consistent with findings of other studies and reflected in Table 2.21,39,43–45 Many AYAs were concerned about the effect their cancer diagnosis might have on their (very young) children and had no idea how to handle this, due to the lack of support for themselves and their children. This includes both the practical support, that is, keeping the household up and running, as well as psychological support, that is, what do I tell my children, how should I do this and how will this affect them? This is in contrast with older adult cancer survivors who may actually rely on their children for practical and psychological support. Also, due to the cancer diagnosis, the AYA's partner had to take over responsibilities related to finances, work and the household, while also taking care of their sick partner. Therefore, AYAs expressed a need for support for their partner as well as for their children and both should be acknowledged as important stakeholders within the topic family and children.
A clear pattern was seen among AYAs explicitly expressing a lack of tailored care, leading to the establishment of a new subtopic called care not tailored. Information leaflets and statistics that were based on pediatric or older adult cancer survivors, HCPs who did not know how to deal with a young person and (after) care that was not in line with one's personal beliefs and physical state all belong to this subtopic. AYAs expressed a need to be seen as a young person with a certain type of cancer—being different from children and older adults—with age-specific, individual needs. Care not tailored may in part be caused by the fact that not all HCPs and healthcare systems are aware of this unique patient population and may therefore overlook their needs. AYAs are still often considered part of the pediatric or adult cancer population instead of a distinct population: This requires an age-specific approach integrated in the more traditional tumor oriented approach.
Topics as palliative care and death were rarely mentioned which is in line with our expectations, as the respondents are all long-term survivors and are therefore probably less confronted with end-of-life issues. It was striking though that the topic late effects was only mentioned by 1.3%, as AYA cancer survivors are at increased risk of late effects, for example, subsequent malignant neoplasms, and cardiovascular diseases, compared to controls.3,46,47 It could be that terms as life after cancer, short-/long-term and late effects are used interchangeably, even though there are significant differences between the latter (i.e., long-term effects can last for months or years after treatment ends, while late effects do not appear or get noticed until years after treatment ends3), or that AYAs are unaware of (the risks of) late effects and possibly not informed about late effects, as AYA-specific late effects and associated risk factors are still not well understood.46 This is in contrast to the wealth of knowledge regarding late effects among the pediatric cancer survivor population.48,49 As late effects may affect survivorship in terms of quantity and quality, more research on the prevalence, risk factors, and surveillance of late effects is needed. HCPs and future AYA cancer patients should be timely informed about the possible risks, symptoms, and treatment of these outcomes.
Lastly, some topics span a very wide range of issues. One of these topics is emotions, which includes, but is not limited to, loneliness, self-esteem, stress, worrying, the need for a psychologist/therapy, coping, insecurities, and fear (of cancer recurrence/death). Although it clearly shows a need, no distinction was made between how this was expressed by participants, for example, informational needs, coaching/supervision, specific issues/effects, group therapy, resources, services, specific HCPs, or just naming the topic itself. Therefore, no specific recommendations are given on which level these needs exist, that is, the type of support needed. Future research might focus more specifically on how to meet the age-specific care needs of AYAs.
Implications for health care and researchBased on the results, we propose to slightly adapt the framework of the current anamnesis. First, we suggest to add specific subtopics (like peers with cancer; aftercare and rehabilitation, and short- and long-term effects) and more comprehensive topics (like social life including friends and family and children; and lifestyle including nutrition, sport and movement and complementary care), and to change topic names to be more inclusive (finances instead of benefits and compensations). Also, some topics are closely related, which makes them a good target for interventions. Visual rearrangements of topics, that is, putting them closely together, could show relatedness (like death close to palliative care).
If this anamnesis is implemented in the electronic patient files in the future, it might support the provision of holistic care. To use the anamnesis to its fullest potential, the AYA can read through it before one's hospital appointment and think of topics of interest to discuss. As the treating HCP might focus more on the medical side, a nurse specialist (for example focused on AYAs) can discuss the anamnesis with the AYA and make sure the patient is referred to the right specialist or intervention if needed, and stay in contact with the AYA during the disease trajectory. Using the anamnesis in the electronic patient files ensures that all multidisciplinary HCPs are up to date and aware of the AYAs' situation. In the end, this may improve awareness and communication among the involved HCPs and AYAs, help to meet the needs of AYAs and improve their outcomes. Furthermore, the results of this study can also be used to improve the AYA education module for HCPs.
The results of this study provide evidence for future research, which should assess the (added) value of AYA-specific care, its effect on AYAs' (unmet) needs and possible gaps. In addition, as the current recommendations are based on the input of long-term cancer survivors and needs may change over time (see Table 2 for related quotes), the input of other AYAs (based on sociodemographic and clinical data), for example those with palliative disease or with an uncertain or poor cancer prognosis,4 may help tailoring age-specific care, making it more inclusive for AYAs throughout all phases of the cancer continuum. Due to the limited sample size of specific subgroups in this study, for example, AYAs who were initially diagnosed with stage IV cancer, it is difficult to draw conclusions on their needs, for which additional research is needed.
Strengths and limitationsThis study is unique in its long-term follow-up and number of participants. However, it is not without limitations. Firstly, the question to assess the need for age-specific care was not validated. Up till now, there is, however, no validated questionnaire available to assess the need for age-specific care among AYA cancer survivors to the best of our knowledge. Also, as an open text box was used, we relied on the memory of participants to describe their needs without providing an overview of possible topics—which potentially introduced recall bias. This may have led to an underestimation of their needs, as it is quite likely that one has not remembered all their age-specific care needs since diagnosis at the moment of questionnaire completion. However, participants have not been pushed into any direction of topics by providing predefined topics: Therefore, the topics that were mentioned must have been of real importance to them, with possibly immense (long-term) effects, and led to the emergence of new topics. AYAs without a need or who did not know if they have had a need, expressed that they were unfamiliar with the term “age-specific (AYA) care,” which makes it difficult to answer the question with either yes or no, and whether they received age-specific care. Secondly, although the response rate of 35.3% is in line with previous studies, it shows that we miss the input of quite some AYAs who did not participate, which reduces generalizability.24 Lastly, due to the cross-sectional design of this study, no conclusions could be drawn on possible changes in need for age-specific care over time and per phase of the cancer continuum, including diagnosis, treatment, follow-up, and survivorship.
CONCLUSIONTo conclude, a substantial proportion of long-term AYA cancer survivors showed a need for age-specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.
AUTHOR CONTRIBUTIONSSilvie H. M. Janssen: Conceptualization (equal); data curation (equal); formal analysis (equal); investigation (equal); methodology (equal); project administration (equal); resources (equal); software (equal); validation (equal); visualization (equal); writing – original draft (lead); writing – review and editing (lead). Carla Vlooswijk: Investigation (equal); writing – review and editing (supporting). Eveliene Manten-Horst: Writing – review and editing (supporting). Sophia H. E. Sleeman: Writing – review and editing (supporting). Rhodé M. Bijlsma: Investigation (equal); writing – review and editing (supporting). Suzanne E. J. Kaal: Investigation (equal); writing – review and editing (supporting). Jan Martijn Kerst: Investigation (equal); writing – review and editing (supporting). Jacqueline M. Tromp: Investigation (equal); writing – review and editing (supporting). Monique E. M. M. Bos: Investigation (equal); writing – review and editing (supporting). Tom van der Hulle: Investigation (equal); writing – review and editing (supporting). Roy I. Lalisang: Investigation (equal); writing – review and editing (supporting). Janine Nuver: Investigation (equal); writing – review and editing (supporting). Mathilde C. M. Kouwenhoven: Investigation (equal); writing – review and editing (supporting). Winette T. A. van der Graaf: Conceptualization (equal); funding acquisition (equal); investigation (equal); methodology (equal); supervision (equal); writing – review and editing (supporting). Olga Husson: Conceptualization (equal); funding acquisition (equal); investigation (equal); methodology (equal); project administration (equal); supervision (equal); validation (equal); writing – review and editing (supporting).
ACKNOWLEDGMENTSThe authors would like to thank all the adolescent and young adult cancer survivors for their participation in this study, the Netherlands Comprehensive Cancer Organization (IKNL) for the data collection for the Netherlands Cancer Registry (NCR), and the PROFILES registry group for the data collection support.
FUNDING INFORMATIONDr. Olga Husson and Silvie Janssen, MSc are supported by a VIDI grant (198.007) of the Netherlands Organization for Scientific Research. Carla Vlooswijk, MSc is supported by the Dutch Cancer Society (#11788 COMPRAYA study). This research was also supported by an institutional grant of the Dutch Cancer Society and of the Dutch Ministry of Health, Welfare and Sport. Data collection of the SURVAYA study was partly supported by the investment grant (#480-08-009) from the Netherlands Organization for Scientific Research.
CONFLICT OF INTEREST STATEMENTThe authors have no relevant financial or non-financial interests to disclose.
DATA AVAILABILITY STATEMENTThe data presented in this study are available on reasonable request from the corresponding author. The data are not publicly available due to privacy issues.
ETHICS STATEMENTThe study was conducted in accordance with the Declaration of Helsinki and approved by the Netherlands Cancer Institute Institutional Review Board (NCI IRB-IRBd18122) on February 6th 2019.
INFORMED CONSENT STATEMENTInformed consent was obtained from all individual participants included in this study. The authors affirm that human research participants provided informed consent for publication of the quotes in Table 2.
TABLE A1 Demographic and clinical characteristics of all included AYA cancer survivors in total.
| Total population (N = 3989) | |
| N (%) | |
| Age at diagnosis (mean (SD)) in years | 31.6 (5.9) |
| 18–24 years | 610 (15.3) |
| 25–34 years | 1777 (44.5) |
| 35–39 years | 1602 (40.2) |
| Time since diagnosis (mean(SD)) in years | 12.4 (4.5) |
| 5–10 years | 1621 (40.6) |
| 11–15 years | 1375 (34.5) |
| 16–20 years | 993 (24.9) |
| Sex | |
| Male | 1543 (38.7) |
| Female | 2446 (61.3) |
| Marital status at time of questionnaire | |
| Partner | 3317 (83.2) |
| No partner | 656 (16.4) |
| Missing | 16 (0.4) |
| Educational level | |
| No education or primary education | 28 (0.7) |
| Secondary education | 263 (6.6) |
| Secondary vocational education | 1448 (36.3) |
| Higher (vocational) education | 1367 (34.3) |
| University education | 875 (21.9) |
| Missing | 8 (0.2) |
| Living statusa | |
| Alone | |
| No | 3480 (87.2) |
| Yes | 500 (12.5) |
| Missing | 9 (0.2) |
| With partner | |
| No | 1169 (29.3) |
| Yes | 2811 (70.5) |
| Missing | 9 (0.2) |
| With children | |
| No | 1753 (43.9) |
| Yes | 2227 (55.8) |
| Missing | 9 (0.2) |
| With parents | |
| No | 3894 (97.6) |
| Yes | 86 (2.2) |
| Missing | 9 (0.2) |
| With roommates | |
| No | 3938 (98.7) |
| Yes | 42 (1.1) |
| Missing | 9 (0.2) |
| Other | |
| No | 3975 (99.6) |
| Yes | 5 (0.1) |
| Missing | 9 (0.2) |
| Type of cancer | |
| Head and neck | 122 (3.1) |
| Colon and rectal | 82 (2.1) |
| Digestive track, other | 31 (0.8) |
| Respiratory tract | 30 (0.8) |
| Melanoma | 289 (7.2) |
| Breast | 939 (23.5) |
| Female genitalia | 441 (11.1) |
| Male genitalia | 6 (0.2) |
| Urinary tract | 46 (1.2) |
| Thyroid gland | 245 (6.1) |
| Central nervous system | 149 (3.7) |
| Bone and soft tissue | 171 (4.3) |
| Germ cell tumors | 691 (17.3) |
| Lymphoid hematological malignancies | 588 (14.7) |
| Myeloid hematological malignancies | 148 (3.7) |
| Other | 11 (0.3) |
| Primary treatmenta | |
| Surgery | |
| No | 876 (22.0) |
| Yes | 3109 (77.9) |
| Missing | 4 (0.1) |
| Chemotherapy | |
| No | 1755 (44.0) |
| Yes | 2230 (55.9) |
| Missing | 4 (0.1) |
| Radiotherapy | |
| No | 2096 (52.5) |
| Yes | 1889 (47.4) |
| Missing | 4 (0.1) |
| Hormonal therapy | |
| No | 3505 (87.9) |
| Yes | 480 (12.0) |
| Missing | 4 (0.1) |
| Targeted therapy | |
| No | 3678 (92.2) |
| Yes | 307 (7.7) |
| Missing | 4 (0.1) |
| Stem cell therapy | |
| No | 3843 (96.3) |
| Yes | 142 (3.6) |
| Missing | 4 (0.1) |
| Tumor stage | |
| I | 1714 (43.0) |
| II | 1057 (26.5) |
| III | 571 (14.3) |
| IV | 179 (4.5) |
| Missing | 468 (11.7) |
aMultiple options possible.
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Details
; Vlooswijk, Carla 2
; Manten-Horst, Eveliene 3 ; Sleeman, Sophia H E 3 ; Bijlsma, Rhodé M 4 ; Kaal, Suzanne E J 5
; Kerst, Jan Martijn 6 ; Tromp, Jacqueline M 7 ; Monique E. M. M. Bos 8 ; van der Hulle, Tom 9 ; Lalisang, Roy I 10 ; Nuver, Janine 11 ; Kouwenhoven, Mathilde C M 12 ; Winette T. A. van der Graaf 13
; Husson, Olga 14
1 Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands; Department of Medical Oncology, Netherlands Cancer Institute – Antoni van Leeuwenhoek, Amsterdam, The Netherlands
2 Research and Development, Netherlands Comprehensive Cancer Organization, Utrecht, The Netherlands
3 Dutch AYA ‘Young & Cancer’ Care Network, Utrecht, The Netherlands
4 Department of Medical Oncology, University Medical Center, Utrecht, The Netherlands
5 Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands
6 Department of Medical Oncology, Netherlands Cancer Institute – Antoni van Leeuwenhoek, Amsterdam, The Netherlands
7 Department of Medical Oncology, Amsterdam University Medical Centers, Amsterdam, The Netherlands
8 Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, The Netherlands
9 Department of Medical Oncology, Leiden University Medical Center, Leiden, The Netherlands
10 Department of Internal Medicine, GROW-School of Oncology and Reproduction, Maastricht UMC+ Comprehensive Cancer Center, Maastricht, The Netherlands
11 Department of Medical Oncology, University Medical Center Groningen, Groningen, The Netherlands
12 Department of Neurology, Amsterdam UMC, Amsterdam University Medical Centers, Location VUmc, Amsterdam, The Netherlands
13 Department of Medical Oncology, Netherlands Cancer Institute – Antoni van Leeuwenhoek, Amsterdam, The Netherlands; Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, The Netherlands
14 Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands; Department of Medical Oncology, Netherlands Cancer Institute – Antoni van Leeuwenhoek, Amsterdam, The Netherlands; Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, The Netherlands