Adolescents and young adults’ (AYA) views on their cancer knowledge prior to diagnosis: Findings from a qualitative study involving AYA receiving cancer care

Abstract Background Cancer is rare amongst adolescents and young adults (AYA). Previous research has reported (healthy) AYA’s knowledge of risk factors and symptoms as limited, with this potentially leading to delays in help‐seeking and diagnosis. Objectives We explored AYA’s views on their cancer knowledge prior to diagnosis and if/how they perceived this as having affected their experiences of diagnosis and care. Methods We interviewed 18 AYA diagnosed with cancer (aged 16‐24 years). Interviews were recorded and transcribed verbatim. We undertook qualitative descriptive analysis, exploring both a priori topics and emergent themes, including cancer knowledge prior to diagnosis. Results Adolescents and young adults characterized their knowledge of cancer and treatment prior to diagnosis and treatment initiation as limited and superficial. AYA perceived gaps in their knowledge as having profound consequences throughout their cancer journey. These included: hindering recognition of symptoms, thereby delaying help‐seeking; impeding understanding of the significance of tests and referrals; amplifying uncertainty on diagnosis; and affording poor preparation for the harsh realities of treatment. Conclusions Adolescents and young adults perceived their limited cancer knowledge prior to diagnosis as affecting experiences of diagnosis and initial/front‐line care. These findings prompt consideration of whether, when and how, AYA’s knowledge of cancer might be improved. Two broad approaches are discussed: universal education on AYA cancer and/or health; and targeted education (enhanced information and counselling) at and after diagnosis. Patient or Public Contribution Our work was informed throughout by discussions with an advisory group, whose membership included AYA treated for cancer.


| INTRODUC TI ON
Cancer is rare amongst adolescents and young adults (AYA), but its incidence is increasing. 1 Its impact on young lives can be profound.
A growing body of quantitative and qualitative work has considered AYA's experiences of cancer, diagnosis and treatment/care. [2][3][4][5][6][7][8][9][10][11][12][13] That work suggests the experiences and needs of this age group differ both from those of older adults, who comprise the majority of cancer patients/service users, and of younger children.
We recently completed a study which explored AYA's experiences of decision-making about front-line cancer treatment and their perspectives on participation in (Phase 3) clinical trials. That study highlighted significant challenges to informed decision-making about both treatment and trials, including difficulties engaging with (disease and treatment-related) information in the immediate aftermath of diagnosis. 14 The early stages of our analysis revealed an additional, important theme: knowledge of cancer and its treatment prior to diagnosis. Identification of this theme prompted further, more detailed analytical work, which we report in this paper.
Previous research on AYA's cancer knowledge provides a context for this analysis. That research has shown that (healthy) AYA have limited knowledge of key cancer risk factors and symptoms. [15][16][17][18] Studies have also highlighted deficiencies in (healthy) AYA's knowledge of cancer-related personal health surveillance (self-examination) practices and public health initiatives (such as HPV vaccination and cervical screening programmes). [19][20][21][22][23][24][25] It has been suggested that these knowledge gaps may lead to delays in symptom recognition, help-seeking and diagnosis. Late diagnosis is commonly associated with poorer outcomes, and preventable delays are a prominent concern in the AYA cancer literature. 2,5,26 However, prior research has focussed on understanding (typically measuring) healthy AYA's knowledge of cancer. Very limited attention has been given to the views of AYA diagnosed with cancer about their pre-diagnostic cancer knowledge and, whether and, how, they perceive this as having influenced their experiences of diagnosis and care.
Understanding knowledge is important, as studies exploring the information (and other) needs of AYA with cancer further from diagnosis and/or treatment suggest that misconceptions and gaps in knowledge about cancer and its treatment can have costs for AYA later in life.
Several authors report associations between unmet information needs and psychological distress or poor Health-Related Quality of Life. [27][28][29][30][31] Recent years have seen significant developments in AYA cancer care, and, in the United Kingdom (UK), AYA's access to specialist (AYA) cancer services has increased. 32 Nevertheless, scope remains to enhance AYA's preparation for, and support them through, the substantial challenges presented by cancer diagnosis and treatment.
Improved understanding of AYA's prior knowledge (of cancer and treatment) might facilitate this, providing a foundation for the development of additional educational/informational interventions.
Hence, in undertaking the analysis reported here, our objectives were to explore: • AYA's views on their cancer knowledge prior to diagnosis, including its nature, extent, and source(s); • AYA's views on whether and how this knowledge affected their experiences of diagnosis and care.

| ME THODS
In reporting our methodology/methods, we take direction from the Consolidated Criteria for Reporting Qualitative Studies (COREQ). 33

| Study design
Our work is underpinned by a critical realist perspective-a philosophical orientation combining a realist ontology and constructivist epistemology. 34 Qualitative description, focussed on the identification and description of minimally-theorized themes, provided a methodological framework for the study. 35,36 This involved an emergent, inductive design, purposive sampling, semi-structured interviews and an iterative relationship between data collection and analysis. Work was informed throughout by discussions with study advisory group members, who included AYA treated for cancer. The South East Scotland Research Ethics Committee 01 approved the study (REC reference 17/SS/0077).

| Study context
We undertook this study in Scotland, UK. Here, people diagnosed with cancer aged 16 or above typically receive treatment/care from oncologists and/or haematologists in a National Health Service (NHS) Scotland adult hospital. Some patients aged 16-19 receive care from paediatric oncologists in a paediatric hospital. Dedicated education on AYA cancer and/or health; and targeted education (enhanced information and counselling) at and after diagnosis.

Patient or Public Contribution:
Our work was informed throughout by discussions with an advisory group, whose membership included AYA treated for cancer.

K E Y W O R D S
adolescents, cancer, information, knowledge, patient care, qualitative research, young adults AYA cancer/chemotherapy units, with specialist nurses and facilities, have been established (in adult and/or paediatric hospitals) in the four largest Scottish health boards. AYA living in other regions/ health boards may be-and increasingly are-referred to these units/ centres for treatment.

| Study sample
Our approach to sampling was purposive, seeking variation in characteristics potentially relevant to participants' experience(s) and perspective(s). These characteristics included age, gender, diagnosis and place of care. Our sample included AYA who were receiving/received front-line care in all the types of care setting described above.
More information on the sample is provided in Table 1.

| Recruitment
Direct care team members made the initial approaches to AYA.
These professionals outlined the study verbally and gave interested individuals a pack containing a participant information sheet, consent form and an opt-in form with a pre-paid envelope addressed to the research team. AYA interested in taking part were also given the option of contacting the project researcher (RH) by email or phone.
RH followed up these expressions of interest, using contact details provided by AYA. This approach was intended to minimize pressure on AYA to participate, and the burden/work falling on direct care teams. However, it has meant we are unable to say how many potential participants were approached, or what their reasons for declining involvement were. Recruitment continued until our sampling ambitions were satisfied, and new topics and themes no longer emerged in new data.

| Data collection
Interviews were conducted between November 2017 and December 2018, at a time and place chosen by AYA. This was typically their home or a private space at their usual treatment centre. Whilst AYA were usually interviewed on their own, interruptions (by family and/ or health professionals) were common. Four chose to be interviewed with a caregiver present. Interviews were conducted by RH, a social scientist with 15 years' experience of doing qualitative research, substantially relating to AYA's experiences of health and illness. RH was not known to interviewees prior to the study but outlined her professional background and research interests, as well as checking AYA's understanding of the project, before obtaining their written consent to participation. In the UK, people aged 16 years and above are entitled to consent to health research (and indeed to their own health care/treatment); hence, parental consent was not required.
Interviews followed a topic guide, informed by literature reviews, and inputs from clinical co-investigators and AYA advisors. A copy of the full topic guide is appended to our previous publication. 14 Topics/ questions of most relevance to this analysis were as follows: Before your own diagnosis, what did you know about cancer and its treatment?
Is there anything you wish you had known about cancer and its treatment? What have you learnt, since diagnosis, about cancer and its treatment? The guide was revised over the course of the study to take account, and enable further exploration of, emerging themes. It was also adapted, in situ, in response to interviewees' accounts and to give AYA scope to talk freely about issues they viewed as important.
Typically interviews lasted one to two hours; all were recorded, with participants' consent. Contemporaneous notes were taken, which included information on the environment/setting, interruptions and non-verbal communication. Reported enrolment in a trial: n (%) 5 (28) Interviewed without caregiver present: n (%) 14 (78) Time from diagnosis to interview: median (range) 10 (2-59) mo Abbreviation: AYA, adolescents and young adults. a Percentages do not sum to 100% due to rounding.

| Data processing and analysis
Interviews were transcribed verbatim, but anonymized (i.e. participant identifiers were removed). Transcripts were then imported into the qualitative data-indexing software NVivo (Version 11, QSR International Pty Ltd., Doncaster, Victoria, Australia). After familiarization with the transcripts (involving close reading and line-byline coding), more focussed coding and analysis was undertaken by two members of the qualitative research team (RH and JL). Using a constant comparative approach, 37 these individuals coded for topics, issues and themes. Mapping and memo-ing strategies were used to define the content, parameters and relationships between codes.
RH and JL prepared analytical reports, with these providing a basis for discussions to refine and agree coding and reporting frameworks.
Whilst some topics were of a priori interest, and informed lines of questioning in all interviews, the themes/sub-themes reported in this paper were largely emergent, that is derived from the data.
These are outlined in Figure 1 and detailed in the Results section.
Members of the wider research team confirmed that the identified themes were reflective of the data. Whilst interviewees were not asked to comment on individual transcripts, they, and other AYA diagnosed with cancer, were invited to provide feedback on key study findings via a workshop organized in the final stages of the project.

| Study participants
We interviewed 18 AYA diagnosed with cancer whilst aged 16-24 years and receiving care (active treatment and/or follow-up) through an NHS Scotland oncology/haematology service. 17/18 were being (or had been) treated in a specialist AYA cancer/chemotherapy unit. Further information is provided in Table 1.

| Study themes
Under the over-arching theme of '(Views on) knowledge of cancer and its treatment prior to diagnosis', we identified a series of contributory themes. These themes and their relationships are mapped out in Figure 1:

| Sub-theme 2.2: Impeding understanding of the significance of referrals and tests
Adolescents and young adults suggested that their lack of knowledge had had consequences even after help from professionals had been sought. Whilst they often described referral to secondary care for specialist attention and/or further investigations as prompting a suspicion that something quite serious was wrong, few reported having considered cancer as a possibility until this was explicitly suggested by a health professional. Hence, even when scans/imaging, or more invasive investigations such as biopsies had been scheduled, this had not necessarily set off 'alarm bells', as the following young man, who had been experiencing pain and swelling in a lower limb described: It's strange though, even though I had a biopsy, the idea that I might have cancer… barely crossed my mind. (A15) Furthermore, AYA noted how they had not necessarily understood the results of investigations as being suggestive of cancer.
Some remarked that the language professionals used to report the discovery of abnormalities had been unfamiliar to them. For example, A17, a young man 'blue-lighted' from his local hospital to a larger regional facility for investigation of a suspected neurological cancer, explained that the term 'mass' had not held a clear meaning for him: They said, "There's a mass in your brain," or something.

| Sub-theme 2.4: Affording poor preparation for the realities of treatment
As reported in Theme 1, AYA perceived their prior knowledge of cancer treatment as having been minimal. AYA suggested that this too had had consequences, highlighting the gulf between their expectations of treatment and actual experience. For many, treatment had involved not only chemotherapy, but also radiotherapy and/or surgery. Several commented that they had been unaware of the duration of regimens (commonly months and for some AYA-relevant cancers as much as three years). This, and/or the need for frequent and numerous visits including (for some) extended in-patient stays, had been unexpected and dismaying: The biggest shock… was the length of time that I was gonna have chemo… the fact that it was gonna go on for months and months was a bit of a surprise. (A08) Though AYA acknowledged health professionals' efforts to make them aware of the treatment plan and potential side effects, many said they had not grasped the pervasive and brutal impact treatment would have on their lives. With a few exceptions, AYA described treatment as far more debilitating and disruptive than they had anticipated. Several reflected on how, at diagnosis, they had viewed cancer as a 'blip' and treatment as a temporary disruption. Some described planning things to do during treatment, and, as A15 explained, 'almost treating this like a sabbatical'. These AYA said they had soon realized that few of their ambitions were achievable: As a symbol of how naïve I was, when I first got diag- You don't realise the implications… all the ways that it affects you… like some of them are… they're so, I wouldn't say basic, but they're things that maybe we take for granted, on a daily basis kind of thing. (A16) To better prepare AYA for the realities of treatment, some interviewees suggested that health professionals should have much franker conversations at the time a plan was discussed and agreed. However, others expressed different-and sometimes conflicting-attitudes to such information. These AYA surmised that knowing what lay ahead might have compounded their anxieties.

| D ISCUSS I ON
Our objectives in this analysis were to explore AYA's views on their cancer knowledge prior to diagnosis, including if, and how, they felt that this knowledge had affected their experiences of diagnosis and care. In so doing, it was not our intention to suggest that knowledge is the only factor affecting experience, but simply a factor which, to date, has not perhaps received the at-  [40][41][42] However, the impact of lack of knowledge cannot be assumed to be the same for all patient/age groups. We believe this topic invites further exploration. that such a practice is essential if information is to be tailored to patients' evolving needs. 45 The AYA population too might benefit from clinicians establishing a practice of routinely assessing individual patients' prior-and evolving-knowledge and informational needs.

| Implications for policy and practice
Consideration might also be given to the role that parents/caregivers can play in building AYA's cancer knowledge, although it is important to note that parents/caregivers' priorities and information needs may not always align with those of AYA. 14

| Strengths and limitations
The retrospective nature of our study might be considered both a strength and a limitation. Unlike previous survey research with healthy AYA, we collected data from AYA with cancer, who, in contrast to their (healthy) peers were in a position to identify 'known unknowns' (ie what, of importance, they had not previously known).
In addition, the use of semi-structured interviews allowed AYA the flexibility to raise, and describe, issues viewed by them as particularly

| CON CLUS ION
This qualitative work illuminates how (lack of) prior knowledge of cancer may impact upon AYA's experiences of diagnosis with cancer and initial/front-line care. It suggests knowledge gaps may have serious consequences at various points in AYA's pathways to and through treatment. These findings prompt questions as to whether, when and how, AYA's knowledge of cancer and its treatment might be improved. Unfortunately, there are no easy answers, though we suggest two broad approaches warrant consideration. Ultimately individuals may vary in their keenness for, and receptivity to, cancer-related information at different times 38 ; assessment and repetition may be key to improving AYA's knowledge of cancer and its treatment/care.

ACK N OWLED G EM ENTS
Our thanks go to the AYA who supported this study by contributing their time and sharing their experiences. Thanks are also due to NHS staff around Scotland who helped recruit AYA to the project, and in particular to our clinical co-investigators who additionally provided advice and guidance at key points in the study (Dorothy Boyle, David Cameron and Larry Hayward of NHS Lothian; and Nicholas Heaney of NHS Greater Glasgow & Clyde).

CO N FLI C T O F I NTE R E S T
We have no conflicts of interest to declare.