Adolescent and Young Adult Cancer Survivors' Experiences of the Healthcare System: A Qualitative Study

Abstract

Purpose:

To qualitatively examine the experiences of diagnosis and treatment, and attitudes toward ongoing healthcare of adolescent and young adult (AYA) survivors of AYA cancer, to determine barriers to healthcare engagement in the early survivorship period.

Methods:

Forty-two participants aged between 15 and 25 years were recruited between February 2013 and October 2015 as part of a larger Australia-wide study. This study analyzed data collected through a semistructured telephone interview. Interviews were recorded and transcribed verbatim and then coded line-by-line. Data were analyzed for emergent themes using the qualitative software NVivo.

Results:

Many participants demonstrated a good understanding of their cancer diagnosis and treatment. Participants expressed high levels of confidence in their healthcare teams and demonstrated a conscientious approach to their ongoing cancer-specific and general healthcare. However, most AYAs had expectations of the cancer journey that differed from the realities of their experiences.

Conclusions:

The results further highlight the crucial role of healthcare professionals in ensuring AYA cancer patients have accurate expectations of diagnosis and treatment, and develop a strong working knowledge of their disease that is maintained into survivorship. AYA cancer survivors may require ongoing education and support to stay engaged with long-term follow-up care.

Introduction

A diagnosis of cancer can be devastating at any age; however, in adolescents and young adults (AYAs), it comes at a critical point of development with far-reaching consequences for both physical and psychosocial health. These consequences extend not only throughout the cancer journey but also onward into survivorship.¹ At the same time, the incidence of some cancers in this age group is increasing^2,3 and 5-year survival rates are improving to now exceed 80%,^4,5 leading to a growing survivor population with their own specific needs.¹ Due to more aggressive treatments and a longer life expectancy than older adults with cancer, AYA survivors of AYA cancer are particularly susceptible to late effects with significant morbidity and mortality.^4,6 Young cancer survivors have eight times the relative risk of a serious chronic health condition compared with their healthy siblings.⁴ Thirty years after an AYA's diagnosis of cancer, the cumulative incidence of a severe disabling or life-threatening condition, or death is as high as 42.4%.⁴ Common late effects include cardiotoxicities, secondary malignancies, and psychological disorders,⁶ all of which require ongoing, frequent, and specialized screening and management.^4,6,7

AYAs' engagement with the healthcare system in the context of a cancer diagnosis is complicated by developmental factors. The often protracted course of cancer treatment can interfere with important milestones such as education and career attainment, autonomy, romantic relationships, peer relationships, and developing a healthy body image.^8,9 AYAs are more likely to exhibit clinical levels of distress than their pediatric or adult counterparts.¹⁰ In addition, AYAs' developing social and emotional skills may impact their understanding of information surrounding diagnosis and treatment, as well as their interactions with the healthcare team.^11–14 Furthermore, while many services are available to AYAs and their families during treatment,¹⁵ there remains a relative lack of interventions for AYAs who are finishing or have finished treatment.¹⁶ This lack of interventions extends to families, who show a number of unmet needs in the survivorship period.¹⁷

Given these intersecting complexities, it is clear that AYAs require age-specific cancer services.^11,14,18 However, we know little about how best to engage AYAs into survivorship to allow them the benefits of long-term follow-up care.¹⁹ Long-term follow-up data of pediatric cancer survivors indicate that fewer than half report having any cancer-related follow-up in the past 2 years,²⁰ and only 17.8% had received specific advice on risk reduction and screening for cancer-related late effects.²¹ The low rates of follow-up represent a missed opportunity for early detection of potential late effects, risk modification, and overall reduction in morbidity and mortality. This pattern may be amplified in AYA cancer survivors who can show poor healthcare adherence.⁹

Evidence consistently indicates that positive patient experience is associated with good healthcare resource use and engagement with preventative care.²² However, we know very little about how the cancer experience specifically may influence AYAs' engagement with their ongoing healthcare. This study aimed to explore AYA survivors' experiences of their cancer diagnosis, treatment, and ongoing care, to investigate underlying factors that may either promote or hinder sufficient healthcare engagement. Building on research pointing to the cognitive factors that may influence healthcare engagement and adherence, such as health beliefs and health literacy,^23,24 this study focused on AYAs' individual experiences of and engagement with their past, ongoing, and future healthcare. This study aimed to understand AYAs' experiences of their cancer diagnosis and treatment, as well as examine their engagement with their healthcare.

Materials and Methods

Participants

Participants were recruited between February 2013 and October 2015 as part of an Australia-wide randomized controlled trial of a psychosocial intervention for recently off-treatment AYA cancer survivors called “ReCaPTure LiFe” (Resilience and Coping skills for young People and their families To Live well Following cancer).²⁵ The study received ethics approval from the Institutional Review Board of all 10 recruiting hospital sites. Eligible participants were identified through electronic medical records at the participating hospital sites. An oncologist or nurse at each hospital reviewed the potential participant list before invitations were mailed. Participants were told the purpose of the study and could opt in by returning the included written consent form. Participants were not given financial compensation. AYAs were eligible to enroll in the study if they

• Were aged between 15 and 25 years (according to Cancer Australia's definition of AYAs²⁶); and

• Had finished active curative treatment in the past 24 months.

Exclusion criteria included low English proficiency and survivors deemed by a member of their treating team to be unsuitable for the study (e.g., current suicidal risk or exhibiting significant distress based on risk assessment at baseline.).

Interview format

Demographic and medical data were collected through a questionnaire following opt-in. Participants then completed the Psychosocial Adjustment to Illness Scale (PAIS) interview.²⁷ This interview was conducted over the telephone with a research officer with experience conducting psychosocial interviews with cancer patients and survivors (S.E., E.R., or E.D.; see acknowledgments). The PAIS interview examines both the social and psychological adjustment of patients to their illness using 46 questions across seven domains.²⁷ The healthcare orientation section of the interview was the focus of this study, with questions examining participants' attitudes, experiences, information, and expectations surrounding their diagnosis and general health (Appendix 1). The PAIS is a validated interview schedule²⁸ and has previously been used in cancer research.^29–33 Items were adapted for this study to suit an AYA cancer survivor population, for example, “present illness” was amended to “cancer diagnosis,” and patient expectancies clarified to “expectations at diagnosis” and “expectations for the future.” Interviews were audio-recorded and transcribed verbatim.

Data analysis

Interview transcripts were coded line-by-line using the qualitative data analysis software NVivo, version 10 (QSR International, Victoria, Australia). The conceptual framework proposed by Miles and Huberman guided management and analysis of the qualitative data.³⁴ Prominent themes relating to patient expectations, knowledge, and attitudes were determined through independent coding by two investigators (E.M. and B.M.), who met regularly to review the coding process. A number of processes were put in place to ensure the credibility of the themes derived from the data.³⁵ The transcription, coding, and thematic analysis of data took place concurrently, and the two investigators (E.M. and B.M.) also met with the wider study team regularly to engage in discussions that challenged assumptions of the data and revealed potential biases. Descriptive data, including participants' demographic and cancer-related characteristics, were analyzed using SPSS version 23 (IBM Corp., Armonk, New York).

Results

Participants

Interviews were recorded for 42 participants using the PAIS format. Of these, 52% were female; and at interview, most (98%) participants were aged between 15 and 25 years^* and had completed treatment several months ago for a range of young adult cancers, the most common of which was blood cancers (Table 1). Compared to the general population of AYA cancer survivors, participants were more likely to have been treated for a hematological malignancy and less likely to have been treated for solid cancers such as melanoma.³

Table 1.

Demographic Characteristics of Participants

Demographic characteristics (N = 43)
Sex, n (%)
Male	22 (51.2)
Female	21 (48.8)
Mean age at interview in years (SD)	21.00 (2.9)
Range	15.3–26.1
Mean age at diagnosis (SD)	19.69 (3.44)
Range	11–26
Mean time (in months) since treatment completion (SD)	7.66 (4.68)
Range	1–19
Cancer diagnosis, n (%)
Solid	16 (37.2)
Blood	22 (51.2)
Brain	5 (11.6)
Highest level of education, n (%)
Year 10 or below	5 (11.6)
Year 12 or below	18 (41.9)
University or post-graduate	7 (16.3)
Other (e.g., apprenticeship, vocational college)	7 (16.3)
Missing	6 (14.0)
Employment status, n (%)
Employed	20 (46.51)
Unemployed	8 (18.6)
Student	10 (23.2)

Interview themes

Several key themes emerged for each research question and are detailed in Table 2; illustrative quotes are included throughout and in Table 3. Five major themes identified included a tension between diagnosis/treatment expectations and reality, variation in cancer knowledge and understanding, variation in experiences of the healthcare team, and differing approaches to healthcare behaviors and cancer-specific care.

Table 2.

Themes and Subthemes Identified Through the Analytic Process

Themes	Subthemes
Tension between diagnosis/treatment expectations and reality	Positive disconnect
	Negative disconnect
	No expectations
Cancer knowledge and understanding	Provided detailed information
Cancer knowledge and understanding	Did not provide detailed information
Experience of the healthcare team	Positive experience/confidence
Experience of the healthcare team	Mixed experiences
Approach to healthcare behaviors	Conscientious about their health
	Conflicted attitude toward health
	Inattentive to health
Attention to cancer-specific care	Conscientious
	Conflicted
	Unsure
	Fear of cancer recurrence

Table 3.

Derived Themes and Illustrative Quotes

Theme	Subtheme	Data sample
Experiences of diagnosis and treatment
Tension between diagnosis/treatment expectations and reality	Positive disconnect	“I just thought I was going to die. When they first said you've got a brain tumor I just thought that was it” (18-year-old survivor of pilocytic astrocytoma)
	Positive disconnect	“I was scared I was going to lose my hair, which I didn't. That's the only thing I was really worried about” (22-year-old survivor of gestational trophoblastic tumors)
	Negative disconnect	“I didn't realize that if my blood count was too low they wouldn't do [chemotherapy]… [treatment] ended up being seven to eight months (21-year-old survivor of Hodgkin's lymphoma)
		“I was scared that I had to go through the chemo [sic] and all that…when my surgeon told me that I wasn't going to get chemo [sic] I was quite grateful. But then he said I had to get an amputation I was quite shocked” (19-year-old survivor of epithelial sarcoma)
		“I did not know until my first treatment what I was in for. Pain, illness, deeply sick” (18-year-old survivor of rhabdomyosarcoma)
		“Like, I never really thought I could die or like I never really took my illness seriously…And then, once I finished [treatment] it kind of hit me.” (18-year-old survivor of AML)
	No expectations	“I didn't know what to expect. It was like, I didn't want to do [treatment]. I was really upset but I had to do it” (24-year-old survivor of Hodgkin lymphoma)
	No expectations	“Well I mean I was diagnosed one day and in surgery two days later, so I sort of left a lot of the aspects of what everything meant up to my parents” (19-year-old survivor of testicular cancer)
Cancer knowledge and understanding	Detailed information	“So ALL [Acute Lymphoblastic Leukemia] is probably the most common form of leukemia, [following relapse] I was in quite a rare bracket of people” (19-year-old survivor of acute lymphoblastic leukemia)
Cancer knowledge and understanding	Detailed information	“I wanted to know absolutely everything” (24-year-old survivor of Hodgkin lymphoma)
	Undetailed information	“I can't remember the drugs, what they called that they injected me. I just called them chemo [sic] drugs and they injected me with that” (23-year-old survivor of bowel cancer)
	Undetailed information	“I needed mum or dad in the room with me so they took it in because I wasn't really listening” (23-year-old survivor of unspecified brain tumor)
Experience of the healthcare team	Positive experience/confidence	“Yes, it's been good. I can't complain because they saved my life. And I'll never be able to repay them…They're the best in the world at what they do.”18-year-old survivor of pilocytic astrocytoma
Experience of the healthcare team	Positive experience/confidence	“I found [the medical care] was very professional and that they were very up to date. I went through the public and not the private, but it was still quite quick, they didn't fall behind or anything, so I found it quite good.” (17-year-old survivor of clear cell cervical cancer)
	Mixed experiences	“I thought I had a really great doctor and I'd been looked after. Which I did. My surgeries were successful…But I'm beginning to realize that I could have a lot better if I had gone to Melbourne. Because you know I'm being treated in a regional city… I feel like if the situation had been worse, I would be a lot worse off” (23-year-old survivor of neuroendocrine carcinoid tumor of the appendix)
	Mixed experiences	“Ah… very good. Umm except the surgeons ‘cause [sic] umm… could… do with a communications course.” (19-year-old survivor of Ewing's sarcoma)
Attitudes toward current and ongoing healthcare
Approach to healthcare behaviors	Conscientious about their health	“Yeah, well in regards to health I've always been big on exercising and eating well, but I think after treatment I've taken it to the next level” (24-year-old survivor of Hodgkin lymphoma)
Approach to healthcare behaviors	Conscientious about their health	“I eat pretty healthily and I go to the gym as much as I can and I try to get out and about as much as possible.” (24-year-old survivor of fibrolamellar carcinoma)
	Conflicted attitude toward health	“Well I am sometimes a bit chaotic at times, exercise when I can really… if I don't have time [for exercise] then I probably won't do it.” (24-year-old survivor of Hodgkin's lymphoma)
	Conflicted attitude toward health	“I'm not doing a lot of exercise, because I still get pretty tired and I haven't got the energy, but I take the dog for a walk to the beach and sometimes I mow the lawn” (21-year-old survivor of acute lymphoblastic leukemia)
	Inattentive to health	“I have chocolate milk in the morning for breakfast. And I have a prepared meal for dinner. On the weekends I'll have a sandwich or noodles for lunch. But during school, not every day, I'll have, like a donut or something from the canteen.” (16-year-old survivor of Fanconi anemia with myelodysplasia)
	Inattentive to health	“Um… now I'm kind of like back to normal, like I don't really worry about [health] anymore” (18-year-old survivor of acute myeloid leukemia)
Attention to cancer care	Conscientious	“Because the chemo [sic] affected my heart I just have to be careful not to do too much strenuous work, and I had to get my leg working properly again” (20-year-old survivor of osteosarcoma)
Attention to cancer care	Conscientious	“I'm opting to have regular colonoscopies, CT scans, in terms of follow-up testing. They never really given me a certain diet or things to definitely avoid, rather than just the usual alcohol and smoking but that's for every person I think.” (23-year-old survivor of neuroendocrine carcinoid tumor of the appendix)
	Conflicted	“Well, seems pretty alright like, I am not too worried about my health.” (23-year-old survivor of unspecified brain tumor)
	Conflicted	“No, I'm not particularly [participating in cancer specific care]. Yeah, but sometimes [sic].” (24-year-old survivor of non-Hodgkin lymphoma)
	Unsure	“No [oncologist] didn't actually say much, mainly if you have any problems to go and talk to them.” (17-year-old survivor of clear cell cervical cancer)
	Unsure	“No [recommendations surrounding cancer care] that I know. I don't think so, not really.” (18-year-old survivor of unspecified sarcoma)
	Fear of cancer recurrence	“Um, well I hope, I expect that my cancer doesn't come back, or that I don't get new forms of cancer, because that would suck.” (20-year-old survivor of osteosarcoma)
	Fear of cancer recurrence	“Once it comes back twice you sort like feel it's going to come back again, that's pretty strong in your mind” (21-year-old survivor of acute lymphoblastic leukemia)

Theme 1: tension between diagnosis/treatment expectations and reality

The majority of AYAs interviewed indicated that their experiences across the cancer journey had differed in some way from their expectations. Several AYAs experienced a disconnect between their expectations and experiences, which was more negative than anticipated. Some cited more intense and longer term side effects of treatment, such as one 24-year-old survivor of olfactory neuroblastoma who stated “I had been told that recovery was going to be long but I did not really expect it to be this long.”

Conversely, a proportion of participants indicated a positive disconnect, in that, their cancer experience was not as negative as anticipated. This included less severe side effects (e.g., no hair loss) or a better prognosis than expected; for example, a 23-year-old survivor of Hodgkin Lymphoma who described “I guess generally I thought that I was actually going to die… but I guess in the end it was actually really treatable, it's a really normal cancer.”

Some AYAs anticipated different treatment, either in terms of treatment modality or treatment intensity; for example, a 20-year-old survivor of myosarcoma who explained, “I did not know that I would need all the treatment. I just thought it would be surgery and that was it.”

Theme 2: cancer knowledge and understanding

Many AYAs demonstrated a specific working knowledge of their cancer, volunteering information on the epidemiology, pathophysiology, prognosis, and/or preventative care specific to their diagnosis. Within this group, AYAs indicated that they had sought further information about their cancer, and some specified the internet as the source of their further research. One 18-year-old survivor of acute myeloid leukemia (AML) sought information from a range of sources: “when I got told I got AML, I went onto Google and read every single thing, every book about it.” Some AYAs when asked about their diagnosis, did not demonstrate an in-depth working knowledge of their cancer.

When asked to describe details of their treatment, over half of AYAs were able to provide some of the information necessary for another/new healthcare professional to accurately understand their cancer history and generate follow-up recommendations according to guidelines.³⁶ These details include the names of chemotherapeutic agents and whether or not the patient underwent a hematopoietic cell transplant.³⁶ However, some expressed that they were unsure of necessary details, primarily expressing uncertainty about their chemotherapeutic regime or length of treatment.

Theme 3: experiences of the healthcare team

Most AYAs interviewed expressed high levels of confidence in their treating team. An 18-year-old survivor of testicular seminoma reported, “I thought the quality of care was outstanding, the doctors were extremely considerate and compassionate and they did a phenomenal job in ensuring that not only my emotional well-being was taken care of during the whole process but also that of my parents too so. So I was really appreciative of that.”

Of the reasons given for this confidence, most common included the team being personable or supportive, as well as being knowledgeable and displaying good communication. Some AYAs described at least some negative experiences with their doctor or the healthcare team. Negative experiences were most often related to interpersonal dynamics rather than satisfaction with medical care. Commonly, the manner in which information was conveyed or the time given to communication was insufficient, for example a 17-year-old survivor of Burkitt's Lymphoma described his oncologist as, “really good at his job but he is really blunt. He gets in there, makes sure everything is fine and then gets out.”

Theme 4: approach to healthcare behaviors

In measuring AYAs' general healthcare orientation, most AYAs expressed attitudes indicative of being conscientious about their health; a 20-year-old survivor of rhabdomyosarcoma described her approach as, “very conscious about [my] health because we've put all this work into getting it good with all the cancer treatment [I] wouldn't want to sort of ruin it all now.”

Some AYAs expressed some sort of conflict in their attitudes and actions in terms of taking care of their general health; however, three AYAs expressed views reflective of being inattentive to their health, for example, an 18-year-old survivor of AML who stated that, “Now I'm kind of like back to normal, like I don't really worry about it anymore. I probably worry about it less than I should.”

Theme 5: attitudes toward cancer-specific care following treatment

Some AYAs expressed that either they were unsure if they had any cancer specific care requirements or stated that no further care was required. Other AYAs expressed that their specific healthcare requirements and their actions sometimes conflicted. However, the majority of AYAs' responses demonstrated a conscientious attitude toward cancer-specific care demonstrated by a 25-year-old survivor of non-Hodgkin lymphoma who explained, “The only thing that was recommended was to stay away from large crowds because if I get a cold it could be deadly…so I had to adapt my lifestyle”

Although not explicitly asked, some AYAs volunteered some anxiety about cancer relapsing, with one 18-year-old survivor of Burkitt's Lymphoma noting, “Right now I fear ‘what if the cancer comes back or what if this, what if that’.”

Discussion

Before having cancer, many AYAs have had limited experience of hospitals and healthcare teams compared with older adults. AYAs' experiences of the healthcare system during cancer treatment can therefore be a formative experience that shapes their engagement with the healthcare system and attitudes toward their healthcare into survivorship. This study builds on the existing literature by illustrating a substantial disconnect between the expectations of AYA cancer survivors and their experiences of the cancer journey. We found that, while many AYAs understood their diagnosis and at least some of their treatment, some participants expressed they were unaware of key details of their treatment, such as chemotherapy regimens. This information is essential for the medical teams coordinating AYA survivors' follow-up care.³⁶ Many AYA survivors demonstrated confidence in their healthcare team, but with some notable exceptions regarding interpersonal dynamics. In addition, most AYA survivors were conscientious about their overall health and their cancer-specific care. Many survivors were unsure whether they required any ongoing cancer-specific care into survivorship, and some spontaneously expressed fear of the cancer recurring.

The discrepancies between AYAs' expectations and the reality of diagnosis and treatment have important implications. Although participants were not asked the origins of their expectations, other studies have shown perceptions of cancer to be informed by the experiences of friends and loved ones, common depictions of cancer in the media, and the lower health literacy of AYAs compared with older adults.^24,37,38 If a negative disconnect is experienced, in that, the experience of diagnosis and treatment is worse than anticipated (as was noted in our sample), this has the potential to breed distrust in healthcare professionals and the healthcare system. Given that receiving a diagnosis of cancer is one of the most distressing points in the cancer journey,³⁹ early clarification and a clear outlining of trajectory and prognosis may prevent distress and build a stronger healthcare alliance.

We also found that many AYAs understood their diagnosis and most were able to relay some information essential in long-term follow-up.³⁶ Variation in the ability to express information is in line with recent research of young adult survivors of pediatric cancer.⁴⁰ Some participants displayed inadequate knowledge regarding their treatment; potential reasons for this may include the lower health literacy of AYAs,³⁷ a blunting rather than a monitoring coping style as an emotional response to the threatening nature of this information,⁴¹ or not being adequately informed by their treating healthcare practitioner. Regardless, a prior cancer diagnosis and cancer treatment is a significant medical history, and thus it is essential that AYA survivors both understand and are able to communicate this history to their future healthcare practitioners to facilitate ongoing management of late effects.^13,36

AYAs' high levels of trust and confidence in the healthcare team perhaps shows an avenue for resolving some of the misaligned expectations and information needs of AYA survivors. This is in line with other research showing AYA survivors have high levels of confidence in both the cancer care practitioner as well as other healthcare professionals.⁴² While healthcare professionals are challenged with many tasks, including encouraging risk reduction for late effects and conducting screening,⁴³ they are also well positioned to communicate realistic expectations and necessary information to AYA survivors.

The finding that most AYAs are conscientious about both their cancer care and healthcare in general may assist this practitioner–patient relationship. While there is a distinction between self-management and adherence, a conscientious approach to healthcare provides a good foundation for participation in long-term cancer care follow-up, necessary in survivorship.⁴⁴ Of the AYAs who were not conscientious about either their cancer-specific care or general healthcare, these behaviors could potentially be linked to developmental factors such as striving for normality or forgetfulness.⁴⁵ Within this group of AYAs, there remains a significant role for healthcare practitioners, who can play a role in ensuring AYAs are aware of their cancer-specific care and address concerns about relapse.¹

This research addressed a gap in the literature by capturing AYAs' experiences of the early survival period. Little research to date has examined the engagement AYAs with cancer have with their healthcare. Within our sample, we were able to capture a diverse spectrum of experiences across the full range of cancer diagnoses, ages, and geographic locations, as well as obtaining both male and female perspectives in fairly equal proportions. However, this study is subject to several limitations. Participants' views may have been influenced by demand characteristics, as participants may express only certain views to elicit a more positive reaction from the interviewer. Similarly, participants may be subject to response bias, as those who chose to be interviewed may have been more likely to be engaged with healthcare and have had better healthcare experiences. Experiences within the Australian healthcare system may not always be translatable, particularly as Australia's universal healthcare decreases the importance of common challenges such as insurance. We explored cognitive and psychological aspects that are likely to impact future healthcare engagement^9,14,20; however, as we did not explicitly explore barriers to healthcare engagement with our participants, it remains for future studies to build on our findings regarding the health-expectation-experience disconnect and examine the impact of this on service engagement. This study did not administer any rigorous tests of AYAs' cancer-related knowledge. It is possible that participants knew more about their diagnosis and treatment than they reported in the context of the PAIS interview. However, the focus of this study was AYAs' lived experiences and perceptions regarding their level of understanding and experiences of treatment, rather than simply cancer-related knowledge per se.

These limitations notwithstanding, this study highlights key future directions for research that further examines AYAs' experiences of cancer diagnosis and treatment, as well as their information needs and survivorship care. The development of long-term strategies to improve experiences of survivorship will require integrating these findings with the perspectives of other stakeholders such as multidisciplinary hospital teams, primary care physicians, oncology specialists, and AYAs' family members. Potential points of intervention for multidisciplinary teams include ensuring clear communication about the importance of long-term follow-up and cancer-specific care, and increasing awareness of the concerns of AYAs, particularly surrounding relapse.

The results of this study suggest that AYA cancer patients may experience a disconnect between expectations and the reality of their diagnosis and treatment. Some AYAs may not be equipped with adequate information about their cancer to successfully navigate their healthcare into survivorship. At the same time, AYAs appear to be a group who have had largely positive experiences with their healthcare team and who have conscientious attitudes toward their health. This study points to crucial points of intervention that may allow us to harness the reliance of AYAs on their healthcare practitioners to improve their long-term engagement with the healthcare system.

Footnotes

Acknowledgments

The authors wish to thank the young people who participated in this study. We acknowledge the contribution of Emma Doolan, Sarah Ellis, Sanaa Mathur, and Helen Wilson, as well as the support of the wider Recapture Life Working Party: Richard Bryant (University of New South Wales), Phyllis Butow (University of Sydney), Pandora Patterson (CanTeen Australia), Susan Sawyer (Centre for Adolescent Health, VIC), Kate Thompson and Lucy Holland (OnTrac@PeterMac,VIC), Michael Osborn (Youth Cancer Service SA/NT), Meg Plaster (Youth Cancer Service, WA), Belinda Matigian and Ms Lyndal Gray (AYA Cancer Service, Princess Alexandra Hospital, QLD), and Belinda Barton (Children's Hospital Westmead, NSW). The Recapture Life study was cofunded by a beyond blue and Cancer Australia project grant (ID:1022868). The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation, the Kids Cancer Alliance, as well as a Cancer Council New South Wales Program Grant PG16-02 with the support of the Estate of the Late Harry McPaul.

U.S.-D. is supported by an Early Career Fellowship from the Cancer Institute of NSW (ID:14/ECF/1-11) and an Early Career Fellowship from the National Health and Medical Research Council of Australia (APP1111800). Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501).

Author Disclosure Statement

No competing financial interests exist.

Appendix

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