Experiences of Care of Adolescents and Young Adults with Cancer in Australia

Abstract

Purpose:

To examine the care experiences of Australian Adolescents and Young Adults (AYAs) with cancer during a period when youth cancer services (YCS) were developing across the country.

Methods:

A cross-sectional, self-report survey completed by 207 recently diagnosed AYAs with cancer, recruited from the population-based cancer registries of Australia's two most populous states. AYAs were 15 to 24 years old when diagnosed with any form of cancer (except melanoma <3 mm or stage I/II). Respondents indicated whether certain events/experiences occurred at various points along the cancer care pathway and the treatment centers attended. Treatment centers with YCS were identified.

Results:

Participating AYAs were an average of 9 months post-diagnosis. AYAs were treated in over 60 centers, with only 31% attending YCS. While experiences relating to delivery of treatment were generally positive, supportive care experiences and emotional support were missing for many. Information provision at the end of treatment was low, with 60% not receiving a treatment summary and 50% not receiving a written follow-up care plan. In addition, 42% never/rarely received information relevant to their age, and only 54% reported that healthcare professionals definitely checked their understanding of the information provided. AYAs attending YCS were more likely to report age-appropriate treatment settings, information provision, and emotional support.

Conclusion:

While care experiences were generally positive for most AYAs, attending YCS was associated with better communication and supportive care experiences. As only a third of the AYAs surveyed attended these services, efforts are needed to increase AYA access to YCS.

Background

The age-appropriateness of treatment setting, psychosocial support, and the provision of age-appropriate information are key unmet needs for adolescents and young adults (AYAs) with cancer.¹ To address these needs, many countries have now established AYA-specific cancer care services, although their implementation differs between countries.² In the United Kingdom (UK), the Teenage Cancer Trust has developed stand-alone facilities, while many hospitals in the United States (US) provide multidisciplinary care teams that work within existing treatment centers.^2–5 With funding from the Australian Government, the national Youth Cancer Networks Program^6,7 was launched in 2011, beginning with the establishment of multidisciplinary Youth Cancer Services (YCS) within major pediatric and adult oncology hospitals in each mainland state.⁸ Initial planning was for the establishment of AYA Cancer Units aligning with the UK model. However, this approach was not feasible due to Australia's significantly smaller population (∼24.5 million in 2017)⁹ and large landmass (∼7,617,930 km²).⁸ Alternative state-based models were developed to accommodate local cancer policy, geography, and population dispersion. In Australia's most populous state, New South Wales, this included the establishment of four lead sites (three metropolitan and one regional) located within tertiary hospitals. In Victoria, the second most populous state, a collaborative partnership was developed between the largest adult and pediatric providers of AYA care, which in addition to clinical care provides mentoring and secondary consultations across the state. Despite differing models, consistent features across the services include care coordinators and psychosocial and allied health professionals working alongside a lead medical clinician and tumor stream experts.

To assess how young people with cancer experience their care, several groups have developed youth-specific experience of cancer care surveys.^10–13 In the UK, the BRIGHTLIGHT study has adopted a longitudinal design to examine cancer care experiences from point of diagnosis into survivorship.¹³ In Denmark, a survey assessing patient care experiences from diagnosis to treatment and life after cancer has been developed.¹⁰ Another European collaborative study involving 25 countries assessed AYAs' opinions regarding the care they received and AYA service use.¹⁴ In the US, the AYA Health Outcomes and Patient Experiences (HOPE) study has examined unmet service and information needs, as well as psychosocial outcomes for recently diagnosed AYAs.^11,12 Although unmet needs of Australian AYAs with cancer have been explored,¹⁵ to date there has been no assessment of Australian AYAs' care experiences.

This study addressed this gap by providing a population-based assessment of Australian AYA cancer patients' experiences of care. As this is the first study of its kind in Australia, in this article we focus on identifying areas of care that AYAs report are being done well and areas where care could be improved. As the study was conducted after implementation of the YCS model of care had commenced,⁸ we explore how attending these services impacts the care experiences of young people.

Methods

Design and participants

A cross-sectional retrospective survey assessing cancer care experiences. Participants were aged 15 to 24 years at diagnosis, residents of New South Wales or Victoria, and diagnosed with any cancer (excluding melanoma less than 3 mm thick or stage I/II) in the 3–24 months before survey approach. Surveys were completed between November 2013 and November 2015.

Participants were recruited through each state's population-based cancer registry (CR), which initially contacted treating clinicians to confirm eligibility. Clinicians could veto patient approach on the basis that the patient did not have cancer, was not aware of their diagnosis, was not within the eligible age range, had a prognosis less than 24 months, were physically and/or mentally unable to participate, or did not speak English. CRs mailed an information pack that included the survey to all eligible AYAs (or to both the patient and their parent/guardian for 15- to 17-year olds). Surveys could be completed online (12% completed online) or in hard copy. Participants provided written consent in hard copy or online, and for minors, both respondents and parents/guardians provided consent. Human Research Ethics Committees in each state approved the study.

Measures

Experiences of care

The format of the survey was based on previous studies designed to assess clinical and supportive care experiences of adult cancer patients.^16–18 Following these surveys, items assessed whether certain behaviors, discussions, or processes occurred at various points in the cancer care pathway. Development of items for this survey involved several steps. First, the literature was reviewed to identify areas of care that needed to be assessed.^1,2,19,20 Key areas identified included the following: flexibility of treatment timing in relation to patient's other commitments, provision of age-appropriate information, privacy, communication with peers, and age-appropriate treatment settings.

Semi-structured telephone interviews were conducted with healthcare professionals (HCPs) and a convenience sample of 11 AYAs diagnosed with cancer (excluding early-stage melanoma) 2–4 years previously. AYAs were aged 18 years or older at the time of the interview and 15–24 years at diagnosis. Interviews discussed care experiences in the areas identified through the literature review. Interviews were recorded and analyzed to identify themes.

Survey items were developed using findings from the interviews and literature review. The questionnaire was structured to reflect the care domains of diagnosis, treatment (surgery, chemotherapy, and radiotherapy), inpatient experiences, end-of-treatment care, and communication and support provided throughout care. Items in each domain were worded to describe a specific event or care experience with response options indicating whether the event or experience happened. As in England's National Health Service's patient experience surveys^18,21 response options were most commonly in the format “Yes, definitely,” “Yes, I think so,” “No, I don't think so,” “No, definitely not,” and “Not sure.” Survey items in each domain are listed in Tables 2 –6.

Table 1.

Demographic and Treatment Characteristics of Sample

	n (%)
Age at diagnosis (years)
15–19	75 (36.2)
20–24	132 (63.8)
Gender
Male	88 (42.5)
Female	119 (57.5)
Location of residence
Greater metropolitan area (capital city)	142 (68.6)
Regional area	65 (31.4)
Type of cancer
Leukemia	14 (6.8)
Lymphomas	73 (35.3)
Sarcomas (osseous/chondromatous and soft tissue sarcomas)	24 (11.6)
Germ cell and trophoblastic neoplasms	25 (12.1)
Thyroid carcinoma	29 (14.0)
Other (CNS, other carcinomas, melanomas)	42 (20.3)
Type of treatment
Surgery	145 (70.0)
Chemotherapy	127 (61.4)
Radiotherapy	64 (30.9)
Type of treatment center^a
Non-YCS center (general adult hospitals)	141 (69.1)
YCS center (includes pediatric hospitals)	63 (30.9)

n = 204 due to missing data.

YCS, Youth Cancer Service; CNS, central nervous system.

Table 2.

Percentage of Respondents Indicating the Different Care Experiences at the Time of Diagnosis

		Item responses ^a (%)			Type of treatment center (% yes)		Age group (% yes)
	N	Yes, definitely	Yes, I think so	No/not sure	Non-YCS (n = 140)	YCS (n = 63)	15–19 years (n = 75)	20–24 years (n = 132)
When you were told you had cancer were you…
Given the news in a caring and reassuring way?	197	53	37	10	89	93	89	90
Given information about each treatment step, how long it would take, and how it could impact daily life?	206	68	27	5	95	95	93	96
Encouraged to bring a family member/loved one?	191	47	22	31	66	76	82	62^**
Offered emotional support or told where you could go for support?	195	39	23	38	62	61	60	63
Given a chance to talk to an HP to ask more questions in the days following diagnosis?	197	46	24	30	68	75	69	71
Asked if your family/loved ones needed information or support?	193	37	20	43	58	61	55	59
Did you understand the information HPs gave you?	197	39	45	16	83	85	85	83
Was your living situation/work/study taken into account when planning treatment?^b	186	47	31	23	81	72	72	81
Was another HP there for support? (e.g., social worker)	195	22	10	68	29	40	48	24^**
Mean (standard errors) for the diagnosis experiences index					74.4 (2.6)	71.0 (2.2)	72.3 (2.0)	73.2 (2.8)

Percentages for “item responses” go across the columns. Percentages reported for “type of treatment center” and “age group” indicate the proportion of “Yes, definitely + Yes, I think so” responses. Total n for age and treatment setting groups indicated in column heading.

Excludes participants for whom this was not needed. Excluded: treatment setting: non-YCS: n = 16; YCS: n = 3; age groups: 15–19: n = 7; 20–24: n = 13.

p < 0.01.

HP, health professional.

Table 3.

Percentage of Respondents Indicating the Different Care Experiences Relating to Surgery

		Item responses ^a (%)			Treatment center (% yes)		Age group (% yes)
	N	Yes, definitely	Yes, I think so	No/not sure	Non-YCS (n = 105)	YCS (n = 40)	15–19 years (n = 50)	20–24 years (n = 95)
Were you…
Given information about treatment to help you feel prepared?	148	54	29	17	86	78	80	85
Given information about what would happen after treatment finished?	148	68	24	8	93	88	90	93
Given enough information about handling things at home after surgery?^b	140	50	35	15	86	82	81	87
Did the HPs involve in your care…
Understand your needs?	147	56	38	6	94	93	90	96
Take into account your travel times/commitments when scheduling your surgery?^c	113	43	25	32	72	58	56	73
Do everything they could to help you with side effects?^d	136	71	29	1	99	100	100	99
Help you with your physical recovery after surgery?^e	129	59	23	18	83	80	81	83
Help you to manage any pain you experienced after surgery?^f	146	71	27	2	98	98	96	99
Mean (standard errors) for the surgery experiences index					85.5 (2.7)	88.1 (2.4)	88.6 (2.2)	84.9 (3.0)

Excludes participants for whom this was not needed. Excluded: treatment setting: non-YCS: n = 6; YCS: n = 2; age groups: 15–19 years: n = 3; 20–25 years: n = 2.

Excludes participants for whom surgery was too urgent. Excluded treatment setting: non-YCS: n = 27; YCS: n = 7; age groups: 15–19: n = 16; 20–24: n = 16.

Excludes participants. Excluded: treatment setting: non-YCS: n = 10; YCS: n = 1; age groups: 15–19: n = 3; 20–24: n = 6.

Excludes participants for whom this was not needed. Excluded: treatment setting: non-YCS: n = 17; YCS: n = 1; from age groups: 15–19: n = 7; 20–24: n = 9.

Excludes participants for whom this was not needed. Excluded: treatment setting: non-YCS: n = 1; YCS: n = 1; age groups: 15–19: n = 2; 20–24: n = 0.

Table 4.

Percentage of Respondents Indicating the Different Care Experiences Relating to Chemotherapy

		Item responses^a (%)			Treatment center (% yes)		Age group (% yes)
	N	Yes, definitely	Yes, I think so	No/not sure	Non-YCS (n = 78)	YCS (n = 48)	15–19 years (n = 52)	20–24 years (n = 75)
Were you…
Given information about treatment to help you feel prepared?	127	77	20	3	99	94	94	99
Given information about what would happen after treatment finished?	127	56	32	13	95	86
Told about possible changes to your appearance and how these could be managed?	125	80	14	6	95	96	96	93
Did the HPs involve in your care…
Understand your needs?	125	66	29	5	96	94	94	96
Take into account your travel times/commitments when arranging appointments?^b	76	46	29	25	79	64	71	77
Do everything they could to help you with side effects?^c	121	79	18	3	100	92^*	96	97
Keep your appointment schedule well organized and coordinated?^d	85	61	29	9	93	83	86	93
Mean (standard errors) on the chemotherapy experiences index					92.0 (2.4)	91.1 (2.1)	91.8 (2.2)	91.3 (2.5)

Excludes participants for whom this was not needed. Excluded: treatment setting: non-YCS: n = 25; YCS: n = 26; age group 15–29: n = 28; 20–24: n = 23.

Excludes participants for whom this was not relevant. Excluded: treatment setting: non-YCS: n = 5; YCS: n = 5; age groups: 15–29: n = 4; 20–24: n = 7.

Excludes participants for whom this was not relevant. Excluded: treatment setting: non-YCS: n = 18; YCS: n = 23; age groups: 15–19: n = 28; 20–24: n = 22.

p < 0.05.

Table 5.

Percentage of Respondents Indicating the Different Care Experiences Relating to Radiotherapy

		Item responses^a (%)			Treatment center (% yes)		Age group (% yes)
	N	Yes, definitely	Yes, I think so	No/not sure	Non-YCS (n = 42)	YCS (n = 22)	15–19 years (n = 24)	20–24 years (n = 40)
Were you…
Given information about treatment to help you feel prepared?	64	70	22	8	88	100	88	95
Given information about what would happen after treatment finished?	63	57	32	11	85	96	96	85
Did the HPs involve in your care…
Understand your needs?	63	68	24	8	91	95	92	92
Take into account your travel times/commitments when arranging appointments?^b	56	66	18	16	81	90	95	78
Do everything they could to help you with side effects?	61	61	30	10	85	100	96	87
Keep your appointment schedule well organized and coordinated?	63	70	16	14	88	82	83	87
Mean (standard errors) for the radiotherapy experiences index					92.0 (4.3)	90.1 (3.6)	86.8 (3.3)	95.2 (4.6)

Excludes participants from who this was not needed. Excluded: treatment setting: non-YCS: n = 6; YCS: n = 2; age group 15–19: n = 4; 20–24; n = 4.

Table 6.

Percentage of Respondents Who Had Been an Inpatient During Their Cancer Care, Reporting Different Care Experiences During Their Hospital Stay

		Item response ^a (%)			Treatment center (% yes)		Age group (% yes)
	N	Yes, definitely	Yes, I think so	No/not sure	Non-YCS (n = 96)	YCS (n = 50)	15–19 years (n = 57)	20–24 years (n = 89)
While staying in hospital…
Did you have access to resources to help you continue your schoolwork/studies?^b	86	34	22	44	52	62	64	48
Were you happy with your room arrangements?	143	48	29	23	80	71	79	76
Were your friends/loved ones allowed to visit as much as you wanted?	144	71	20	9	92	90	91	91
Were you given things to distract and entertain you?	141	41	22	37	62	65	74	56^*
Did your hospital/ward have a space reserved for adolescents/young adults	143	13	10	78	10	47^**	36	13^**
Was a family member or loved one allowed to stay with you overnight?	141	33	10	57	28	71^**	75	21^**
Did you have confidence and trust in the ward nurses treating you?	147	67	25	8	92	94	98	89^*
Were there enough nurses on duty to care for you?	147	60	29	12	89	88	93	85
If you pushed your call button for help, did the nurses respond as quickly as you thought they should?^c	138	41	38	21	80	77	88	73^*
Did you feel you were treated with respect and dignity?	145	68	28	3	97	96	98	95
Did you have enough privacy when being physically examined or treated?^d	142	65	28	8	94	90	95	91
Did you have enough privacy when being assisted with self-care?^e	125	70	25	6	95	93	96	93
Mean (standard error) for the inpatient experiences index					82.3 (2.3)	71.3 (2.2)^*	76.5 (2.0)	77.2 (2.6)

Excludes participants for whom this was not needed. Excluded: treatment setting: non-YCS: n = 44; YCS: n = 16; age groups: 15–19: n = 15; 20–24: n = 45.

Excludes participants for whom this did not apply. Excluded: treatment setting non-YCS: n = 7; YCS: n = 2; age groups: 15–19: n = 2; 20–24: n = 7.

Excludes participants for whom this did not apply. Excluded: treatment setting: non-YCS: n = 2; YCS: n = 2; age groups: 15–19: n = 0; 19–24: n = 4.

Excludes participants for whom this did not apply. Excluded: treatment setting: non-YCS: n = 17; YCS: n = 12; age groups: 15–19: n = 8; 20–24: n = 13.

p < 0.05, ^**p < 0.01.

The study's advisory panel, which consisted of young people with cancer, their parents, and AYA HCPs, reviewed the draft survey and items were deleted or changed as recommended.

Demographics and treatment setting

Questions assessed demographic characteristics, including age, sex, and employment/school status before and after diagnosis. Cancer type, date of diagnosis, and residential postcode were obtained from the CRs. AYAs identified the hospitals they attended for their cancer care and the hospital they considered their “main” treatment center. Pediatric hospitals and hospitals listed as a YCS site with the organization responsible for funding these services were classified as “YCS centers.”

Data analysis

Frequencies examined participants' reported care experiences. Items were recoded to indicate responses of “Yes, definitely”/“Yes, I think so” versus “No”/”Not sure.” The proportion of respondents providing a “Yes” response in the two age groups (15–19 vs. 20–24 years) and treatment settings (YCS vs. non-YCS) was compared using chi-square tests. Multivariable logistic regression analyses examined the separate associations between age and treatment setting and “Yes” responses on the care experience items. These analyses were repeated with both age and treatment setting included. Items where over 90% of respondents indicated that the experience occurred (responded Yes) were excluded from multivariable analyses.

For each care domain, a “positive experience index” was calculated as the percentage of items answered “Yes” out of the number of items answered within that domain. Thus, instances where participants did not answer all items within a domain were accounted for in the index. Analysis of covariance examined the association between age and treatment setting on domain index scores.

In all multivariable analyses, diagnosis was included as a covariate. Results significant at p < 0.05 are reported.

Results

Patient characteristics

Of the 715 AYAs approached, 209 returned surveys (29% response rate), with valid data available for 207 participants. Participants' and all eligible patients' demographics were similar, although the proportion of females in survey respondents was slightly higher and genital system cancers were slightly underrepresented in one state.

Participants were on average 21 years old when completing the survey (SD = 3.04, range = 15–26) and 8.5 months (SD = 4.13) post-diagnosis (Table 1). The most common cancer was lymphoma (35%), followed by thyroid cancer (14%). Over 60 treatment centers were involved in the care of respondents, with 57% attending only one treatment center and 33% attending two. Thirty-one percent of respondents attended a YCS center. Only 10 of the 60 hospitals respondents attended were YCS centers. Most participants (78%) had completed treatment at the time of the survey.

Experiences when being told of diagnosis and planning treatment

Experiences regarding diagnosis and treatment planning were generally positive (Table 2). However, 38% reported not being offered support or being told how to access support, and 16% did not understand the information given to them.

Older AYAs were less likely than younger AYAs to report an HCP was present for support (Table 2) (odds ratio [OR] = 0.36, 95% CI = 0.19–0.68, p = 0.002) or that they were encouraged to bring someone with them (OR = 0.37, 95% CI = 0.18–0.77, p = 0.008) when receiving their diagnosis. These associations remained significant in analyses that also controlled for type of treatment center. Type of treatment center was not associated with experiences at diagnosis (Table 2).

Experiences of treatment

Experiences relating to provision of information and support during treatment were positive (Tables 3 –5). The majority of participants felt that staff involved in their treatment understood their needs and did everything they could to help manage side effects. However, 25% of chemotherapy patients and 16% of radiotherapy patients thought their travel times and commitments were not considered when making appointments.

Experiences of inpatient care

One-hundred forty-eight participants (72%) were treated as an inpatient. Of these, most (74%) shared their hospital room with much older patients and 78% reported that the hospital did not have a dedicated AYA space (Table 6). Most participants (57%) reported that family members/loved ones could not stay overnight, with this more common for those attending adult (67%) than pediatric (5%) hospitals.

In univariable (Table 6) and multivariable analyses, older AYAs were less likely than younger respondents to report the following: a family member being allowed to stay overnight (OR = 0.09, 95% CI = 0.04–0.21, p < 0.001), being provided with resources to entertain/distract them (OR = 0.47, 95% CI = 0.23–0.99, p = 0.047), and the availability of an AYA space (OR = 0.26, 95% CI = 0.11–0.61, p = 0.002). In univariable and multivariable analyses, respondents attending a YCS center as an inpatient were more likely to report access to an AYA space (OR = 8.24, 95% CI = 3.39–20.03, p < 0.001) and being allowed to have a family member stay overnight (OR = 6.22, 95% CI = 2.84–13.62, p < 0.001). The associations found with YCS and age remained significant in analyses that controlled for both age and type of treatment center. In addition, after controlling for type of treatment center, older respondents were less likely to report that nurses responded quickly to their calls for assistance (OR = 0.33, 95% CI = 0.12–0.90, p = 0.03).

Experiences at the end of treatment

End-of-treatment care was the area with the greatest proportion of patients reporting events did not occur (Table 7). Gaps in care at this stage included the following: not receiving a treatment summary (reported by 60% of participants), not receiving a written follow-up care plan (50%), not being told about new symptoms to look for (43%), and not being told how to manage ongoing symptoms and side effects (33%).

Table 7.

Of Respondents Who Had Finished Treatment, Percentage Reporting Different Care Experiences at This Time (n = 161)

		Item responses^a (%)			Treatment center (% yes)		Age group (% yes)
	N	Yes, definitely	Yes, I think so	No/not sure	Non-YCS (n = 112)	YCS (n = 46)	15–19 years (n = 53)	20–24 years (n = 108)
At the end of treatment, were you…
Given a written plan that included information about follow-up care?	161	26	24	50	50	52	42	55
Given a written summary of diagnosis and treatment to show to other doctors in the future?	161	22	19	60	35	52^*	38	42
Told about the follow-up tests and check-ups you would need?	159	69	27	4	94	100	94	96
Told about new symptoms to look out for?	161	32	25	43	59	52	57	57
Offered help with returning to daily life?	156	21	26	53	42	60^*	52	44
Told about the emotions that young people may experience after finishing treatment?	160	19	25	56	40	56	47	43
Told how to manage ongoing symptoms or side effects?^b	134	28	39	33	67	69	61	70
Are follow-up appointments and tests coordinated by health service staff to reduce the number of times you have to visit the hospital?	160	44	31	24	73	82	81	73
Mean (standard errors) for the end-of-treatment experiences index					59.7 (3.8)	63.5 (3.1)	57.4 (2.9)	65.8 (4.1)

Excludes participants who did not have ongoing symptoms/side effects. Excludes: treatment setting: non-YCS: n = 22, YCS: n = 4; age groups: 15–19: n = 9; 20–24: n = 18.

p < 0.05.

In univariable (Table 7) and multivariable analyses, those attending a YCS center were more likely to receive a written summary of their care (OR = 2.05, 95% CI = 1.02–4.12, p = 0.044). In univariable analyses, attending a YCS center was associated with being offered help returning to daily life (Table 7). However, other care experiences did not differ by treatment center. Age was not related to end-of-treatment care experiences in either univariable or multivariable analyses. In analyses that controlled for both age and type of treatment center, only the association between YCS center and receiving a written summary of care was significant (OR = 2.21, 95% CI = 1.07–4.55, p = 0.04).

Experiences of communication and support throughout care

Around half (48%) of the sample reported that there had definitely been an HCP or team who provided them with ongoing emotional support throughout their care (Table 8). However, only 54% of participants reported that HCPs always checked that they understood the information they received, and 42% indicated that they never/rarely received age-appropriate information (Table 8).

Table 8.

Percentage of Respondents Indicating Different Communication and/or Support Experiences Throughout Their Cancer Care

		Item responses ^a (%)			Treatment center (% yes)		Age group (% yes)
	N	Yes, definitely	Yes, I think so	No/not sure	Non-YCS (n = 141)	YCS (n = 63)	15–19 years (n = 75)	20–24 years (n = 132)
Throughout your cancer care has there been an HP or team who provided you with ongoing emotional support if you felt you needed it?	205	48	13	40	54	76^**	68	57
Were you offered the chance to meet with other young cancer patients/survivors?	203	14	18	68	25	48^**	43	26^*
Were you given enough information about…
Possible long-term effects of treatment and how these can be managed?	205	51	33	16	84	89	88	83
How your treatment might impact studies/work/usual activities?	206	52	31	18	81	87	87	80
How to look after your physical health?	207	50	27	23	76	79	77	77
How to discuss your cancer experience with family/friends?	206	25	21	54	41	58^*	47	45
Things to do or not do during treatment?	203	51	32	17	82	86	85	82
Why your medications were important?	201	59	27	13	88	85	89	85
Did the HPs involve in your care…
Know enough about young people and cancer to be helpful?^b	206	51	37	12	86	94	93	85
Help you to cope with painful or uncomfortable tests or treatments?	205	54	36	11	89	89	88	90
		Always	Sometimes	Rarely/Never/Not sure
Throughout your cancer care how often…
Did you have the opportunity to talk alone with the HPs involved in your care?	182	68	20	12	89	86	83	92
Did you have confidence and trust in the doctors treating you?	203	86	14	0	100	100	100	100
Did HPs check whether you understood the information they gave you?	207	54	38	8	91	95	97	89^*
Were you given information that was relevant to your age group?	206	34	24	42	51	73^**	64	55
Did you have enough privacy when talking to HPs about your care, needs, and concerns?	206	85	13	2	98	97	96	99
Did your family or loved ones have enough opportunity to talk to the HPs involved in your care?	206	68	23	8	91	94	95	90
Mean (standard errors) for the communication and support experiences index					81.5 (2.1)	80.1 (1.8)	77.8 (1.7)	83.8 (2.3)^*

The response option “I did not receive any support” was combined with the “No/not sure” responses for this question.

p < 0.05, ^** p < 0.01.

In univariable (Table 8) and multivariable analyses, older AYAs were less likely than younger AYAs to have had the opportunity to meet other young patients/survivors (OR = 0.49, 95% CI = 0.27–0.91, p = 0.024). In univariable (Table 8) and multivariable analyses, respondents attending a YCS center were more likely to have access to a HCP for ongoing emotional support (OR = 2.77, 95% CI = 1.40–5.47, p = 0.004), have the opportunity to meet other young patients/survivors (OR = 2.75, 95% CI = 1.46–5.18, p = 0.002), be given enough information about how to discuss their cancer with family/friends (OR = 1.98, 95% CI = 1.07–3.64, p = 0.028), and receive information relevant to their age group (OR = 2.58, 95% CI = 1.33–4.97, p = 0.005). While associations between YCS and communication and support experiences remained significant when both age and type of treatment center were included in analyses, the association between age and meeting other young patients/survivors was no longer statistically significant.

Care domain index scores

Mean scores on each domain's experience index are shown in Tables 2 –8 by age group and treatment setting. In general, domain scores were similar regardless of age and treatment setting. The exceptions to this were the domains of inpatient care and communication and support. Younger patients had higher mean scores than older patients on the inpatient care index (F_(1,145) ₌ 14.03, p < 0.001) and this association remained after controlling for treatment center. Mean scores on the communication and support index were significantly higher for respondents attending a YCS center compared to those not attending YCS (F_(1,201) = 5.16, p = 0.024) and this association remained after controlling for age.

Discussion

To our knowledge, this is one of the few large-scale quantitative surveys of care experiences of AYAs with cancer internationally and is the first in Australia. Our results indicate that most participants had positive experiences regarding the provision of treatment-related information and care, and perceived their treatment team as understanding their needs. However, around 40% did not feel informed regarding how to access emotional support at diagnosis and did not receive information relevant to their age, suggesting that communication and support are key areas for improvement. Gaps in end-of-treatment care were also common, with 40%–50% of respondents indicating that they did not receive a treatment summary or a written follow-up care plan, and 57% not feeling informed about symptoms they should monitor in the future. As AYA cancer survivors are at an increased risk for second malignancies and chronic health conditions,^22,23 survivorship care plans are important information tools to support self-management and improve outcomes. Our results suggest that many Australian AYAs are transitioning into survivorship without the information needed to assist them in navigating this stage.^24,25

While several groups have reported the development of surveys assessing AYA cancer care experiences,^10,13 their findings have not yet been reported. A recent study from the UK has reported some data on the care experiences of AYAs with cancer.²¹ Although questions differed slightly between studies, a comparison of results suggests that the Australian AYA experience has some similarities and differences to AYAs in the UK. For instance, similar proportions of AYAs in our study (13%) and the UK (19%) reported that they were not told they could bring a family member/friend with them when diagnosed. AYAs in our study seemed to have more confidence and trust in their doctors than AYAs in the UK, with 28% of the UK AYA respondents reporting trust in only some or none of their doctors, while no one in our sample reported “Rarely/Never” and 14% reporting trust “Sometimes.”²¹ Similarly, while 8% of patients in our study, who had an inpatient stay, did not have confidence and trust in their ward nurses, in the UK, 35% of AYAs indicated trust in only some or none of their ward nurses. Unfortunately, the UK study did not assess end of care, and items assessing communication and support experiences were not comparable between surveys.

While treatment experiences, including provision of treatment-related information, did not differ by treatment center type, those attending a YCS center more commonly reported positive experiences relating to emotional support and communication, and receiving a written summary of treatment. This is similar to findings from the UK that patients treated at AYA-focused centers were more likely to report age-appropriate care and support.²¹ A key element of YCS in Australia is the inclusion of social workers, psychologists, or care coordinators with specific AYA experience in the healthcare team.⁸ The differences our study found in the care experiences of those attending or not attending YCS centers reflect the key role these staff have in this model of care.⁸ Differences in accessing a youth-friendly space at the hospital are also in line with the development of YCS, where charitable funding has made the establishment/refurbishment of dedicated youth spaces possible.⁸ Our results contribute to the larger body of research showing that YCS centers help to ensure that AYAs with cancer receive their treatment in an age-appropriate, emotionally supportive environment.¹⁵ However, unlike the situation for pediatric cancer, similar to the situation in other countries, AYA services in Australia are not centralized. As only 31% of our sample attended a YCS center, our findings suggest that, at least up to November 2015, most Australian AYAs with cancer were missing out on benefits of these services. Future research is needed to determine whether this situation has since changed.

A key finding from our study is the low level of written information provided to patients at the end of treatment. This is similar to a US study of adult cancer survivors where only 38% reported receiving written treatment summaries²⁶ and a LIVESTRONG study in which 30% of AYA cancer survivors reported receiving a written treatment summary.²⁵ Our findings add to the literature indicating that AYAs feel unprepared for the transition into survivorship.²⁷ Other work has shown that AYAs and their parents are confused about the tests they need to monitor their health and whether their cancer has returned.²⁸ Workbooks covering general information (e.g., health insurance) and patient-specific information (e.g., medical care and how to deal with their emotions) have been rated by AYA cancer survivors as helpful aids in the transition from pediatric to adult care^29,30 and may be helpful more generally as AYAs transition to survivorship.

While there were few differences in the care experiences of older and younger AYAs, the differences we found suggest older AYAs are more likely to be treated as independent adults.

Our study has several strengths. We recruited our samples through population-based CRs in Australia's two most populous states. As our sample attended over 60 different hospitals, our study captures experiences in a broad range of environments, rather than being limited to centers or clinicians with AYA expertise. Our sample is substantially larger than many other quantitative studies in this area, which have a median of 52 participants¹ and the increased sample size provides greater confidence in our estimates. Our survey items were developed through literature review and interviews with the target population, ensuring our survey assessed important components of AYA cancer care. However, a number of limitations should also be noted. While our response rate was low, it is comparable to other studies assessing care experiences or unmet needs in AYAs (e.g., 31%,²¹ 26%,¹⁵ 35%,³¹ and 25%³²). Respondents were on average 9 months post-diagnosis and while time since diagnosis was generally not associated with care experiences (data not shown), accuracy of respondents' recall is a limitation. Our study was conducted at a time when many YCS centers were still being developed, and ongoing improvements in local AYA models of care should result in improvements in cancer care experiences over time. Finally, due to small numbers for most individual cancer types, we could not examine the influence of diagnosis on responses.

Nonetheless, our study provides novel information on the care experiences of Australian AYAs with cancer. While care experiences relating to treatment were generally positive, age-appropriate communication and emotional support were lacking. While attending a treatment center with an AYA focus increased the likelihood of receiving this support, only 31% of our sample attended these services. Although it may be difficult to demonstrate survival benefits from treatment in a dedicated AYA service, the data presented in this study support the argument that overall care and psychosocial support are likely to be superior in these services. To ensure that the majority of patients in this age group have access to these services, strategies are required to centralize treatment, with devolved care where appropriate, as in the management of children's cancers.

Footnotes

Acknowledgments

The authors would like to acknowledge and thank the young people who took part in the study, members of our advisory committee for their assistance in developing the survey, and the cancer registries in the two states for their expertise in approaching patients regarding study participation. CanTeen Australia was instrumental in establishing Youth Cancer Services in Australia.

This work was supported by a National Health and Medical Research Council of Australia (NHMRC) project grant No. 1012250, with funding also from CanTeen Australia.

Author Disclosure Statement

No competing financial interests exist.

References

Bibby

, White

, Thompson

, Anazodo

. What are the unmet needs and care experiences of adolescents and young adults with cancer? A systematic review. J Adolesc Young Adult Oncol. 2017; 6:6–30.

Ferrari

, Thomas

, Franklin

, et al. Starting an adolescent and young adult program: some success stories and some obstacles to overcome. J Clin Oncol. 2010; 28:4850–7.

D'Agostino

, Penney

, Zebrack

. Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer. 2011; 117(10 Suppl):2329–34.

Adolescent and Young Adult Oncology Progress Review Group. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. USA: National Cancer Institute: National Institutes of Health, 2006 Contract No.: NIH: 06-6067.

National Collaborating Centre for Cancer. Improving outcomes in children and young people with cancer. National Institute for Health and Clinical Excellence: London, United Kingdom; 2005.

Palmer

, Patterson

, Thompson

. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools. Palliat Support Care. 2014; 12(3):183–8.

Anazodo

, Chard

. Medical and psychosocial challenges in caring for adolescent and young adult patients with cancer. Cancer Forum. 2013; 37(1):23–6.

Osborn

, Little

, Bowering

, Orme

. Youth Cancer Services in Australia: development and implementation. International perspectives on AYAO, Part 3. J Adolesc Young Adult Oncol., 2013; 2:118–24.

Statistics ABo. Australian demographic statistics March quarter 2017. Canberra: Australian Bureau of Statistics; 2017.

10.

Sperling

, Petersen

, Holge-Hazelton

, et al. Being young and getting cancer: development of a questionnaire reflecting the needs and experiences of adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2017; 6(1):171–7.

11.

Harlan

, Lynch

, Keegan

, et al. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv. 2011; 5(3):305–14.

12.

Keegan

, Lichtensztajn

, Kato

, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv. 2012; 6:239–50.

13.

Taylor

, Fern

, Solanki

, et al. Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer. Health Qual Life Outcomes. 2015; 13:107.

14.

Jones

, Pini

, Morgan

, et al. How do teenagers and young adults with cancer experience their care? A European Survey. J Adolesc Young Adult Oncol. 2017; 6(1):102–10.

15.

Sawyer

, McNeil

, McCarthy

, et al. Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers. Support Care Cancer. 2017; 25(7):2229–39.

16.

Carey

, Leropoli

, White

The PROSPECT program. Patient responses: an ongoing survey of people experiencing cancer treatment. Pilot Study. Melbourne, Australia: Centre for Behavioural Research in Cancer, The Cancer Council Victoria, Prepared for: CanNET Victoria; 2009.

17.

Jenkinson

, Coulter

, Reeves

, et al. Properties of the picker patient experience questionnaire in a randomized controlled trial of long versus short form survey instruments. J Public Health Med. 2003; 25(3):197–201.

18.

Department of Health. National cancer patient experience survey 2010. London, United Kingdom: Department of Health Publications; 2010.

19.

Gallini

, Hooker

. Young people's and carer's views on the cancer services they receive. Cancer Nurs Pract. 2005; 4:27–32.

20.

Abrams

, Hazen

, Penson

. Psychosocial issues in adolescents with cancer. Cancer Treat Rev. 2007; 33:622–30.

21.

Furness

, Smith

, Morris

, et al. Cancer patient experience in the teenage young adult population- key issues and trends over time: an analysis of the United Kingdom National Cancer patient experience surveys 2010–2014. J Adolesc Young Adult Oncol. 2017; 6(3):450–458.

22.

Tai

, Buchanan

, Townsend

, et al. Health status of adolescent and young adult cancer survivors. Cancer. 2012; 118(19):4884–91.

23.

Lee

, DuBois

, Coccia

, et al. Increased risk of second malignant neoplasms in adolescents and young adults with cancer. Cancer. 2016; 122(1):116–23.

24.

Barthel

, Spencer

, Banco

, et al. Is the adolescent and young adult cancer survivor at risk for late effects? it depends on where you look. J Adolesc Young Adult Oncol. 2016; 5(2):159–73.

25.

Shay

, Parsons

, Vernon

. Survivorship care planning and unmet information and service needs among adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2017; 6(2):327–32.

26.

Sabatino

, Thompson

, Smith

, et al. Receipt of cancer treatment summaries and follow-up instructions among adult cancer survivors: results from a national survey. J Cancer Surviv. 2013; 7(1):32–43.

27.

Thompson

, Palmer

, Dyson

. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009; 13(3):207–12.

28.

Duffey-Lind

, O'Holleran

, Healey

, et al. Transitioning to survivorship: a pilot study. J Pediatr Oncol Nurs. 2006; 23(6):335–43.

29.

Bashore

, Bender

. Evaluation of the utility of a transition workbook in preparing adolescent and young adult cancer survivors for transition to adult services: a pilot study. J Pediatr Oncol Nurs. 2016; 33(2):111–8.

30.

Blacklay

, Eiser

, Ellis

. Development and evaluation of an information booklet for adult survivors of cancer in childhood. Arch Dis Child. 1998; 78:340–4.

31.

Crawshaw

, Glaser

, Hale

, Sloper

. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care. 2009; 18:381–90.

32.

Wilkes

, Coulson

, Crosland

, et al. Experience of fertility preservation among younger people diagnosed with cancer. Hum Fertil. 2010; 13:151–8.