Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15–29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety.This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery.Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019.Australians (n = 118) were recruited nationally by health care professionals.U.S. participants (n = 72) were recruited nationally via social media.The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway.Sensitivity analyses examined the possible contribution of age and gender.Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery).There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support.Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care.A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.
Keywords: experience of care, PREMs, adolescent and young adult cancer, satisfaction, international study, patient experiences Background T he global burden of cancer is significant among adolescents and young adults (AYAs). 1 While the incidence is lower among AYAs than older adults, 2 and the 5-year relative survival rate is higher, 3,4 the aftermath of cancer can reverberate across decades of survivorship. 5,6[9][10] A cancer diagnosis during the AYA period coincides with developmentally impactful life-stages.It can profoundly impact identity formation, transition to independence, peer and romantic relationships, education, and employment. 11AYAs with cancer experience inferior psychosocial outcomes compared with their child and adult counterparts, 12 underscoring the need for developmentally relevant support.However, neither pediatric nor adult health care settings are fully equipped to meet their needs.,14 In Australia, most AYAs receive cancer care through public hospitals, within a universal tax-funded health care system. 15he five Youth Cancer Services (YCS) based in major hospitals are funded by federal and state governments, with coinvestment and management by Canteen, a national charity.They care for about 75% of AYAs (defined as 15-25 years) who require hospital-based treatment for their cancer. 16he YCS comprise five lead sites in major hospitals, which work with *30 other hospitals providing a national network of care. 15They are guided by the Australian Youth Cancer Framework 17 that outlines key components of quality care, including national coordination of cancer services, increased access to support services and clinical trials, comprehensive medical and psychosocial assessment, and multidisciplinary expertise in AYA care. 17,18y comparison, in the United States, most AYAs (defined as 15-39 years) are treated in community hospital cancer clinics or academic medical centers.Treatment costs are covered by the patient's or their parent's insurance.AYAs only comprise 10% of patients within any clinic 19 ; however, 90,000 are diagnosed annually.A minority of treatment facilities offer specific services for AYAs, and there is no coordination of services between hospital systems.There are currently no nationally funded government support programs to provide oversight for AYA care in the United States.
While health care delivery success has traditionally been measured using clinical outcomes, there has been increasing emphasis on patient-reported outcomes as indicators of quality of care. 20Patient-reported experience measures (PREMs), which report the alignment between patient experience and best practice recommendations for cancer care, 21 can provide valuable information to inform improvements in health care practice and are increasingly being collected for AYAs, including in the UK, North America, and Australia. 22e collected PREMs data from AYAs with cancer in the United States and Australia, allowing a comparison of patient experiences between these two countries.We focused on the following generally recognized priority areas for AYAspecific cancer care: fertility provision, age-appropriate communication, and psychosocial support 23 as well as overall satisfaction with cancer treatment and service.Our aim was to examine how differences in patients' experiences can be understood in the context of their respective countries' models of AYA cancer care delivery and oversight.

Study design and setting
This cross-sectional descriptive study used a self-report survey to investigate the experiences of care of AYAs across

Participants and recruitment
In Australia, the survey was distributed through the YCS.Most participants came from Victoria and New South Wales, the two most populous states.Patients aged 15-25 years at diagnosis, who completed active treatment between 2015 and 2019, were invited by health care professionals to complete an online survey via SurveyMonkey.
The U.S. participants were AYAs aged 15-39 at diagnosis and primarily recruited via social media.They received their care in many academic and community cancer centers spread over a broad geographic area comprising numerous U.S. states. 24Surveys were completed online via REDCap.To better align with the Australian dataset, this comparison used the subset of the U.S. respondents diagnosed between 2014 and 2018 while aged 15-29 years.

Measures
Experience of care survey.The young person's experience of care survey (YPEoC) was adapted from the AYA Experience of Care survey developed by Cancer Council Victoria. 22It was piloted with Canteen's National Youth Advisory Group to assess its relevance, clarity, and appropriateness.
The Australian version contained a maximum of 117 questions and covered the following domains: finding out you had cancer; deciding about treatment; your surgery; your radiotherapy; your chemotherapy; staying in hospital; YCS at your hospital; communication; and overall experience.Within each domain, respondents were asked whether they had received that type of treatment/service, and if so, whether particular care experiences had occurred during that phase of their treatment.They were also asked what types of professionals were involved in their care, what types of support were provided, and how satisfied they were with their care.Questions about psychosocial support focused on the support provided by the YCS, since that is one of the YCS's core functions. 18he U.S. version of the survey was similar to the Australian version, with small alterations to reflect systemic differences in care provision.For example, when asking about psychosocial support, the U.S. version asked about support received from both hospital/cancer services and from other supports such as online and community organizations.It contained a maximum of 125 questions.
Participants gave their survey responses on a 5-point Likert scale.For example, in response to the question ''Was fertility discussed in a sensitive, supportive way?'' the response options were: (1) Yes, definitely; (2) Yes, I think so; (3) No, I don't think so; (4) No, definitely not; and (5) Not sure/can't remember.Consistent with the approach used with the original AYA Experience of Care survey, 22 responses were dichotomized into Yes (responses 1-2) or No/Unsure (responses 3-5).
Both versions of the survey used branching logic to only present questions that were relevant to the participant.The U.S. version automatically skipped all irrelevant items based on previous responses.The Australian version used automatic skipping at the domain level but also provided the response option ''this wasn't needed'' for some items, which was treated as a skip.The estimated time for survey completion ranges between 15 and 30 minutes if done in one continuous sitting, depending on the number of skips.

Analysis
In accordance with each country's privacy legislation, the combined international dataset was limited to aggregated, categorical data (proportions and denominators).We compared the proportions of Australian and U.S. participants who endorsed different care experiences on the YPEoC using Pearson's chi-square tests of independence, or Fisher's exact test if one or more cells had an expected size of less than 6.A similar approach was taken for satisfaction questions, where we compared the proportions of Australian and U.S. participants who said they were satisfied/very satisfied.
We made an a priori selection of 37 items that appeared in both countries' surveys and that were the most relevant to the AYA cancer care priority areas. 23We used the Benjamini-Hochberg procedure to limit the false discovery rate to 0.05, 25 resulting in an index p-value of 0.0235.
We also conducted demographic comparisons between the Australian and U.S. samples, to identify possible sources of bias.No adjustment for multiple comparisons was applied to these comparisons so we could identify and account for all demographic differences.Thus, the index p-value for significance was set at 0.05.
Follow-up subgroup analyses explored the possible impact of demographics on survey items that were considered particularly sensitive to between-sample differences.For example, the comparison between U.S. and Australian fertility experiences was repeated separately for males and females.Given the exploratory nature of these sensitivity analyses, and the small sample sizes, no adjustment for multiple comparisons was applied, with the index p-value for significance set at 0.05.

Demographic and clinical characteristics
Table 1 presents the demographic and clinical characteristics of the 118 Australian and 72 U.S. participants and associated chi-square tests.Participants from the U.S. were significantly more likely to have been female and aged over 24 at diagnosis.Australian participants were significantly more likely to have been enrolled in school at the time of recruitment.Most participants spoke English only at home (88% of Australian and 96% of U.S. AYAs).
Participants had a mix of cancer diagnoses in the proportions expected.There was a non-significant trend suggesting that Australian participants may have been more likely to have a hematological cancer, with higher proportions of Australian participants having lymphoma and sarcoma, and a higher proportion of U.S. participants having breast cancer.
There was no evidence of a significant difference between countries in treatments received, but Australian participants were significantly more likely to report receiving care from several types of multidisciplinary service providers including nurse coordinators, psychologists or social workers, and occupational therapists or physical therapists.There was also a non-significant trend suggesting that Australian participants may have been more likely to receive inpatient care, which is consistent with the diagnostic differences noted earlier.
Satisfaction with cancer treatment and service.Table 2 presents the proportion of Australian and U.S. participants who were satisfied or very satisfied with their experience of medical and overall care.There was no evidence of a significant difference in satisfaction with each component of medical care, but a significantly higher proportion of Australian participants were satisfied with the overall support they received from their cancer service.
Fertility preservation.Table 3 presents the proportion of Australian and U.S. participants who endorsed different fertility-related care experiences in the survey.In the first fertility question, all participants were asked if they had been told about possible impacts of treatment on their fertility.Australian participants were significantly more likely to endorse this item than U.S. participants.
Follow-up analyses showed that this effect was only significant for females.As can be seen in Table 3, similar proportions of females (89%) and males (93%) were told about the possible impacts in Australia, whereas in the United States this information was given to 100% of males but only 69% of females.When the analysis was limited to participants aged under 25 years, the effect remained significant.
The remaining three fertility items were only answered by participants who said they had been told about the possible impacts of treatment on their fertility.Once again, Australian participants were significantly more likely to endorse each fertility experience item, with follow-up analyses showing COMPARING AYA EXPERIENCES OF CARE that each effect was significant for females, but not males.When the analysis was limited to participants aged under 25 years, the effects remained significant, except for one item that asked whether fertility had been discussed in a sensitive way.
Age-appropriate communication.a Exact age at diagnosis could not be calculated for some Australian cases who chose not to provide their date of birth and/or their date of diagnosis on the survey.These questions were optional for Australian participants, since their study eligibility had already been checked and confirmed by the recruiting health care professionals.
b Statistical comparisons were not performed at the diagnosis level due to the large number of categories and small cell sizes.c Other includes desmoid tumor, endometrial, head and neck, kidney, lung, neuroblastoma, neuroendocrine, pseudomyxoma peritonei, rectal, and skin (non-melanoma).
d Other includes clinical trial nurses, education/career coordinators, medical specialists/consultants, music therapists, peer workers, prosthetists, and radiation therapists.
CNS, central nervous system.

PATTERSON ET AL.
including: understanding the information provided at diagnosis; being happy with their involvement in decision-making; receiving information relevant to their age group; and feeling they were treated like an AYA.U.S. participants were more likely to have been the only person involved in making treatment decisions.
There was no evidence of a significant difference in the proportion of respondents who felt that their family or loved ones had enough opportunities to talk to the health professionals, who felt they could trust their health professionals with important information, or who reported having a loved one present when they were given important information.
Follow-up chi-square tests with participants aged under 25 were conducted for three items: being the only one involved in making decisions about treatment; being happy with their involvement in decision making; and being given information relevant to their age group.In each case, the difference between countries was still significant.
Direct provision of psychosocial support.Table 5 presents the proportion of Australian and U.S. participants endorsing different experiences of psychosocial support.U.S. participants were significantly more likely to report that they needed support that was not provided by their cancer care team (this item was endorsed by 4% of Australian AYAs and 41% of U.S. AYAs).U.S. participants were also significantly more likely to have been offered the chance to meet with other young cancer patients or survivors.For all other psychosocial support items analyzed, Australian participants were significantly more likely to endorse the experience described.This included: being asked questions to see what support was needed; being offered emotional support; their loved ones being offered support; and receiving ongoing support.a No statistical comparison could be performed, because one cell was 0. b Participants were only asked this question if they said they had been told about the possible impacts of their cancer/treatment on fertility.Participants who said this question was not relevant to them were also excluded from the analysis.
c Analysis used Fisher's exact test, because one or more cells had an expected count of less than 6.

COMPARING AYA EXPERIENCES OF CARE Discussion
This study offers important insights into the way that AYAs experience cancer care in two countries with different approaches to service coordination, funding, and accountability.The results suggest that while most patients in both Australia and the U.S. are satisfied with their medical treatment, there is a significant difference in how AYAs rate the support they receive from their cancer service.Australian young people reported higher satisfaction levels than U.S. participants in their overall support, along with better experiences of care in relation to fertility support, age-appropriate communication, and most notably, psychosocial support.
In seeking to understand and explain these differences, the presence or absence of government funding and national coordination of clinical services appear to be important contributing factors.
As noted earlier, there is both state and federal funding and national oversight of AYA cancer care in Australia, with a single Youth Cancer Framework to guide operations  nationally in the provision of best practice coordinated multidisciplinary care. 17This strategy improves consistency in service delivery and promotes sharing of expertise, ideas, and learnings between services. 13,15Consistent with this, a study in the United Kingdom found that AYA patients were more likely to report unmet information and support needs when treated outside specialist AYA cancer treatment centers, and recommended that health care professionals seeing AYA patients elsewhere should be provided with support from the AYA cancer treatment centers. 26n the United States, there is no national framework to standardize care delivery between hospitals and there is also more variation in funding sources between services.Access to care is based on insurance coverage and individual financial resources, with the most common payors for AYA cancer treatment being employers or university insurance programs. 27While most U.S. participants in our study were insured at the time of diagnosis, 24 Parson et al. found that 25% of U.S. AYAs reported some period without insurance coverage during the 3 years post-diagnosis. 27his international variation in funding approaches could potentially help to explain the different experiences of fertility preservation we identified in our study.Access to fertility preservation is particularly inconsistent in the United States, and even when insured, many U.S. patients have outof-pocket costs.Our survey found that Australian participants were significantly more likely to have been told about possible impacts on fertility.
Further, of those who had been told about the possible impacts, Australian participants were more likely to report that fertility was discussed in a sensitive way, to have been told about preservation options, and to have received a fertility referral.In the United States, provider concern about patients' ability to pay for fertility preservation has previously been shown to be a barrier to these discussions. 28o account for the gender differences between our Australian and U.S. samples, and since fertility preservation is often simpler and cheaper for males, 29 we compared Australian and U.S. responses with our fertility questions for females and males separately in a follow-up analysis.This revealed that the differences between countries only applied to female participants.
It is possible that U.S. doctors are less likely than Australian doctors to talk to their female patients about fertility preservation options or to provide them with fertility referrals, because they are too expensive or difficult to access. 30However, such constraints should not preclude providers in all countries from informing patients in a sensitive way about their risk to fertility, consistent with the American Society of Clinical Oncology (ASCO) and other guidelines. 31n relation to age-appropriate communication, U.S. AYAs were significantly more likely to have endorsed being the only decision maker from their family present when discussing their cancer treatment regimen with their treatment team.This means that for Australian AYAs, treatment decision making was more likely to be a joint process involving more than one family member.Australian AYAs were also more likely to report receiving age-appropriate information.
To account for age differences between the samples, these analyses were repeated for participants under 26 years of age, and the findings were consistent.Concerningly, U.S. AYAs were significantly less likely to say they understood the information provided at diagnosis, to feel that they were treated like an AYA, or to believe that their health care professionals knew enough about young people and cancer.
The high proportions of Australian participants endorsing positive communication experiences suggest that Australia may have more consistent levels of age-appropriate care between sites.This may be due in part to Australia's national approach to AYA cancer care, with a higher degree of variability arising from a system without national guidelines or coordination (the U.S.).
Perhaps the most compelling difference in experiences of care relates to psychosocial support, with Australian participants significantly more likely to have been offered and/or received support across a wide range of domains.Australian AYAs were also more likely to report that they had a nurse in the role of cancer care coordinator and were more likely to have had psychologists, social workers, occupational therapists, and physical therapists involved in their cancer care.
We have previously reported that U.S. AYAs are more likely to receive psychosocial support from online and community organizations, with less than half being provided with information about AYA support services by their health care team. 24This suggests that many U.S. AYAs may be required to source their own support services.In contrast, Australian AYAs generally receive psychosocial support directly from their YCS as a routine part of treatment. 13iven this, it may be unsurprising that U.S. AYAs were more likely to miss out on certain critical age-specific interventions such as those related to their social support network, education, or work.Our finding that *40% of U.S. AYAs reported unmet needs for support is congruent with previous reports from the United States. 32However, it should be noted that U.S. AYAs were more likely than Australian AYAs to have been offered the chance to meet other AYAs with cancer, which often involves connecting with community organizations outside the hospital.
Study limitations include that on average, U.S. participants were significantly older and more likely to be female than Australian participants, with non-significant trends suggesting between-country differences in relation to cancer type and inpatient care.All of these may have biased the results.While the nature of the data did not allow us to control for these variables in the main analyses, we endeavored to account for the age and gender differences by conducting relevant follow-up subgroup analyses.
The different recruitment methods used between countries may have resulted in other forms of selection bias that we were unable to account for.For both countries, it is also possible that self-selection played a role such that AYAs who felt more satisfied or engaged with their health care may have been more likely to participate.
Further, the low proportion of participants who spoke a language other than English at home suggests that both samples were not representative of the ethnic/linguistic diversity of their respective populations, which would limit the generalizability of our conclusions.Finally, the high rates of insurance coverage of our U.S. participants 24 may have influenced our findings, with the experiences of those without insurance potentially comparing even less favorably to the experiences of Australian AYAs.

COMPARING AYA EXPERIENCES OF CARE
Future research could compare Australian and U.S. experiences of care with those of AYA patients from the United Kingdom (whose system is relatively similar to Australia) and from other countries with different models of care.It would be useful to make the survey available in different languages, and to control for the possible impact of treating hospital type (pediatric, adult, and/or specialist AYA service; community or academic center). 22,24t should also be acknowledged that gaps remain in our understanding about how and whether the provision of specialist AYA care translates to improvements in other patient-reported outcomes, such as quality of life. 33Future research could compare countries' performance in relation to both PREMs and an AYA-specific measure of quality of life, and examine the relationship between these outcomes.
Despite these limitations, this study is notable for permitting a comparison of the cancer care experiences of young people between countries.To our knowledge, this has not been done before.Experience of care measures provide a useful paradigm for such comparisons, since they are grounded in internationally applicable best practice guidelines for care while allowing AYAs' voices to be heard in relation to their individual experiences.

Conclusion
The unique needs of AYA cancer patients demand consistent, age-appropriate best practices to achieve optimal medical and psychosocial outcomes.This study demonstrates the potential benefits of a nationally coordinated, evidencebased, specialized system of support services for AYAs with cancer, allowing hospitals to deliver high value care without needing to develop their own system for patient management.In addition, such standardization allows AYA cancer care providers to receive specialized training and communicate with professionals in similar roles throughout the country.
Australia and the United States.The study was approved for

Table 1 .
Table 4presents the proportion of Australian and U.S. participants who endorsed experiences relating to communication with health professionals.Australian participants were significantly more likely to endorse thirteen of the communication experiences examined, Demographic and Clinical Characteristics of Participants from Australia and the U.S.

Table 2 .
Proportion of Australian and U.S. Participants Who Were Satisfied or Very Satisfied with Their Experiences of Medical and Overall Care a Analysis used Fisher's exact test because one or more cells had an expected count of less than 6.

Table 3 .
Proportion of Australian and U.S.

Table 4 .
Proportion of Australian and U.S. Participants Endorsing Different Experiences a Analysis used Fisher's exact test, because one or more cells had an expected count of less than 6.AYA, adolescent and young adult.

Table 5 .
Proportion of Australian and U.S. Participants Endorsing Different Experiences of Psychosocial Support