How Do Teenagers and Young Adults with Cancer Experience Their Care? A European Survey

Abstract

Purpose:

To gather the perspectives of Teenagers and Young Adults (TYA) with cancer across Europe on the care they received and research priorities for TYA services.

Methods:

A questionnaire was designed by TYA oncology specialists in the United Kingdom and translated into 11 other European languages. It was disseminated to TYAs in various European countries with the help of collaborators in the European Network for Cancer in Children and Adolescents (ENCCA). Free text responses were analyzed using a thematic approach.

Results:

301 participants representing 25 countries were entered into the analysis. Only 9% of the sample had experience of a ward solely for the use of TYAs. Two thirds of participants agreed with the need for TYA-specific services. Participants reported that important aspects of TYA care included access to psychological care, youth workers and physiotherapists, higher levels of staffing, and healthcare workers who understand the needs of TYAs and communicate effectively. The most frequently endorsed areas for future research were “monitoring after treatment,” “communication between professionals and young people,” “research about cancer,” “fertility preservation,” and “back to work/school.”

Conclusion:

European collaboration between TYA and professionals in delivering this project has been feasible. This study contributes to developing a healthcare culture that values the perspectives of service users. It has provided an insight into what TYAs perceive as important aspects of their care, how they think TYA care can be improved, and what they consider to be important areas for research.

Introduction

The increasing incidence of cancer and disappointing outcomes in Teenagers and Young Adults (TYA; 13–24 years)^1,2 have resulted in an emerging interest in TYA-specific patient care and research.^3–9

Stark et al. recently described the rationale and early development of specialist TYA services in much of Europe and made clinical consensus recommendations to improve outcomes.¹⁰ Recent reviews have identified remaining key controversies that include the age range best considered as TYA and the specific features of excellent TYA services (over and above the characteristics of excellent cancer services for children or for older adults).^11,12 The relative merits of specialization into regional centers versus local services and improving recruitment to clinical research to improve outcomes are subject to ongoing prospective clinical and epidemiological studies.^13–15

Amidst clinical studies and opinions, the importance of gathering and valuing the perspectives of service users has become an increasingly utilized research method.¹⁶ Patient experience can be defined as “the sum of all interactions, shaped by an organization's culture, that influence patient perceptions across the continuum of care”.¹⁷ The previously widely used practice of asking adult carers as proxies for the views of young people in research regarding TYAs has been replaced by a cultural shift to ascertain the views of young people with cancer directly and take their views seriously, ensuring we work for young people and not on them.^16,18–23 Our own recent literature reviews and other studies have supported placing service user involvement at the heart of the design and priorities of TYA services.^24–26 Recent data describing service user opinion about the place of specialist care for TYA in Europe have come from the United Kingdom, Italy, and the Netherlands.^20,27,28 Service user involvement has also been central to improving the design of TYA-specific research in the United Kingdom and may have played a role in some improvements in clinical trial recruitment.^29,30

An existing international initiative, which seeks to represent the views of the TYA cancer population, is The International Charter of Rights for Young People with Cancer.³¹ Launched in 2010, through the collaboration between five worldwide charities, it aims to raise awareness of the needs of TYAs throughout the world and improve their access to effective holistic care, from diagnosis to survivorship, despite geographical location. However, the European Union is diverse, and therefore comparative international data from service users may assist in developing a European consensus toward policy for service provision and future research, while identifying areas of cultural or geographical difference that should be left to local or national initiatives.

The European Network for Cancer Research in Children and Adolescents (ENCCA) ran from 2011 to 2015. It combined the knowledge and expertise of those working in the field of child, adolescent, and young adult oncology, to improve services, referral pathways, holistic care, and training for staff throughout Europe. Our research has drawn upon the ENCCA network of professionals and young people and their personal contacts living with and after cancer in Europe, to quantify and describe their experiences of their care and future priorities for service development, based upon their experience of cancer treatment.

Methods

TYA oncology professionals within ENCCA and young people developed a questionnaire to investigate the experiences and perspectives of TYAs across Europe The content of the questionnaire was developed with reference to literature reviews,^5,24,32–52 upon the reflection of TYA oncology professionals within ENCCA (oncologists, nurse specialists, and researchers) and young people describing their experiences of TYA care and services. The survey contained 21 closed and open questions, designed to investigate the experiences and perspectives of TYAs across Europe on the care they had received, their opinion of TYA cancer services, and research topics they considered important, in addition to capturing demographic and clinical details (Appendix Table A1). The survey took ∼15 minutes to complete. Questionnaire topics included the following: place of care; whether the participant felt they were treated as a child, teenager, or adult; TYA-specific services (facilities and professional attributes); the applicability of the International Charter to their experiences; and their future research priorities.

Ethical approval in the United Kingdom was not required for this study as it was a service evaluation.⁵³ The primary TYA ENCCA professional(s) involved in each country established whether ethical approval was required in their region and sought the advice of their local ethics committee accordingly.

The questionnaire was disseminated through clinical and service user contacts through the ENCCA network using Bristol Online Surveys (BOS) and was open from September to December 2013. Participants were recruited using a snowball technique, with the questionnaire being initially sent to the primary TYA ENCCA professional(s) in a country, who then disseminated to their known group of TYA patients, who sent it on to others they knew. Implementing the snowball approach, however, meant that several ineligible people completed the questionnaire, due to it being passed from one young person to another. The online nature of the questionnaire meant that anyone who was sent a link could respond. Therefore, to ensure inclusion of only participants from Europe who had been treated for cancer as TYA, exclusion criteria were applied (Table 1).

Table 1.

Exclusion Criteria

Participants from outside Europe
Age >24 years when first diagnosed with cancer
Current age <13 years
Age unknown
Age <12 years when first had cancer^a

Those who were under 12 years when first diagnosed, but had transitioned from children's to adult services were retained, as they had been part of Teenagers and Young Adults services.

All data were extracted from BOS and analyzed in SPSS (IBM Statistical Package for Social Sciences Statistics v21) to determine the frequency of responses and compare and contrast the answers of different demographic and clinical groups. Initial electronic translation of the free text responses was cross-checked by a native language speaker and analyzed using a thematic approach. The key themes that emerged from the comments of TYAs were used independently and in combination with the quantitative data.

Results

413 participants responded to the survey.

Demographics

Three hundred one participants remained in the final sample representing 25 European nations (Table 2 and Fig. 1).

FIG. 1.

Participants per region of Europe.

Table 2.

Participants per European Nation

Region	Country	Frequency	Percentage
Western Europe	Austria	24	8.0
	Belgium	2	0.7
	France	34	11.3
	Germany	11	3.7
	Luxembourg	1	0.3
	Netherlands	7	2.3
	Switzerland	8	2.7
	United Kingdom	21	7.0
Subtotal		108	35.9
Eastern Europe	Albania	1	0.3
	Bosnia and Herzegovna	6	2.0
	Bulgaria	2	0.7
	Croatia	5	1.7
	Estonia	14	4.7
	Lithuania	1	0.3
	Macedonia	2	0.7
	Montenegro	1	0.3
	Poland	2	0.7
	Romania	65	21.9
	Serbia	5	1.7
	Turkey	2	0.7
Subtotal		106	35.2
Northern Europe	Denmark	7	2.3
	Finland	1	0.3
	Sweden	15	5.0
Subtotal		23	7.6
Southern Europe	Italy	45	15.0
	Portugal	19	6.3
Subtotal		64	21.3
Total		301	100

Romania, Italy, and France had the greatest number of participants (65, 45, and 34 respectively). Participants ranged from 2 to 24 years (mean = 16 years) when they were first diagnosed with cancer and at the time of completing the questionnaire, their age ranged from 13 to 49 years (mean = 22 years). The two largest cancer groups were hematological and sarcoma. Nearly half of the participants received chemotherapy. Most participants were either in education or employed, and the majority lived with their parents (Table 3).

Table 3.

Summary of Demographic Results

n = 301	Frequency	Percentage
Age (years) group on completion of survey
13–16	37	12.3
17–19	76	25.2
20–24	111	36.9
25–30	56	18.6
30+	21	07.0
Age (years) group at diagnosis
2–12	41	13.6
13–16	146	48.5
17–19	68	22.6
20–24	46	15.3
Tumor group
Hematological	145	48.2
Sarcoma	89	29.6
CNS	24	08.0
Carcinoma	14	04.7
Unknown	12	04.0
Germ cell	10	03.3
Benign	4	01.3
Pediatric tumor	2	00.7
Melanoma	1	00.3
What treatment have you had?
Chemo only	71	23.6
Chemo+surgery	67	22.3
Chemo+surgery+radio	66	21.9
Chemo+radio	55	18.3
Chemo+radio+BMT	13	04.3
Other	9	03.0
Surgery only	6	02.0
Chemo+radio+surgery+BMT	6	02.0
Chemo+BMT	3	01.0
Radio+surgery	2	00.7
BMT+surgery+chemo	2	00.7
Radio only	1	00.3
Whom do you live with?
With my parents	203	65.5
On my own	41	13.2
With my partner	41	13.2
With one or more friends	14	04.5
Other	4	01.3
Siblings	4	01.3
Grandmother	2	00.6
Student residence	1	00.3
What are you doing with your life now?
Working in a job	98	29.2
At university	70	20.8
At college	58	17.3
At school	53	15.8
Not working/not in education	31	09.2
Other	18	05.4
On sick leave	5	01.5
Volunteering	3	00.9

BMT, bone marrow transplant; radio, radiotherapy.

Place of care

Almost two thirds of participants (62.5%) were treated in a children's ward during some part of their treatment. One quarter (25.9%) spent time in an adult ward. Only 9% of the entire sample experienced a ward solely for TYAs. Almost half of these cases were in Western Europe and none in Northern Europe. Of the 15 participants in Western Europe who were treated on a TYA-specific ward, 10 were from the United Kingdom, 4 were from France, and 1 was from the Netherlands. Other countries where individuals reported experience on a TYA-specific ward were Romania, Italy, and Portugal (eight, seven, and one participant, respectively). Almost 80% of all participants from Eastern Europe were treated in a children's ward. Although Western Europe had the highest number of participants treated in a TYA ward, the majority reported receiving some of their treatment in a children's or adult ward.

The percentage of participants who were treated in a TYA ward was low throughout all age groups (8.7%–11.8%) and not related to age at diagnosis. The majority (84.9%) of participants who were diagnosed with cancer between the ages of 13 and 16 were treated in a children's ward. This percentage remained high (70.6%) in the 17–19 age group. This fell to 15.2% of participants treated in a children's ward when the age at diagnosis was between 20–24 years. The percentage of participants treated in an adult ward increased with age of diagnosis: 12.2% of 2–12 years; 17.1% of 13–16 years; 32.4% of 17–19 years; and 80.4% of 20–24 years.

The mean age at which participants felt was “too old” for a children's ward was 19 years and “too young” for an adult ward was 18 years (Fig. 2).

FIG. 2.

Age at which teenagers perceived to be too old for a children's ward and too young for an adult ward.

Two thirds of participants agreed with the need for TYA-specific services. Of those who received treatment in a TYA ward, 77.4% were in favor of TYA-specific services, compared to 79.8% treated in an adult ward, and 63.3% treated in a children's ward. 95.7% of participants from Northern Europe were in favor of TYA-specific services. 76.9% of participants from Western Europe, the region with the highest proportion of participants treated in a TYA ward, were in favor of TYA-specific services. In Eastern Europe, 49.1% were not in favor of TYA-specific services.

The age at diagnosis of cancer was a significant factor in whether the individual was in favor of TYA-specific services (X² [3, n = 301] = 13.472, p < 0.004). The greater the age at diagnosis, the more likely participants were in favor of TYA-specific services (Fig. 3).

FIG. 3.

Percentage of participants in favor of Teenagers and Young Adults-specific services.

Participants were asked what they want from TYA-specific wards. The five key themes that emerged were “staffing,” “equipment,” “treatment,” “environment,” and “activities.” Participants desired higher levels of staffing (notably physiotherapists) and better access to psychological care and youth workers. Age-specific aspects about the clinical environment included the following: TYA-appropriate decoration, brighter colors, sports, and music facilities, and study areas. More general themes included comfortable furniture, relaxation areas, and outdoor spaces. Suggested activities and equipment centered on age-appropriateness included the following: age-appropriate films/music/games, “no toys,” Wi-Fi, satellite TV, and drinks/food machines. TYAs in some areas of Eastern Europe (e.g., Romania) prioritized more fundamental needs; access to appropriate medical equipment and investigations (where others prioritized facilities and décor).

How TYAs are treated

Overall, 71.3% of participants felt that staff treated them like a TYA, rather than a child or older adult. Northern Europe had the lowest percentage of participants who felt this way (47.8%). It was clear that TYA-specific care can be provided from an adult or a pediatric department. Over 80% of participants from Romania were treated in a children's ward, but 72.3% of Romanian participants reported that they felt they were treated like a TYA. Overall, 75% of those treated in a children's ward felt that they were treated like a TYA, whereas this was 64.6% for those who received their treatment in an adult ward.

One young person said, “it is not the equipment, but the attitude of doctors and nurses that treat us.” Participants said that they wanted staff to be appropriately qualified, but that this was not as important as their personal and professional qualities; they wanted staff in wards to understand the needs of TYAs. The free text responses defined those attitudes under three emerging themes; “personal qualities,” “professional qualities,” and “communication.” Participants wanted the people caring for them to have several general characteristics of good professionals—to be understanding, caring, patient, approachable, positive, and trustworthy. Specifically participants wanted their care team to be knowledgeable about TYA cancers and treatments, but also have knowledge about signposting to support services and information. This included knowledge about fertility and body image; ability of staff to build relationships with TYAs; age-appropriate role-modeling; and being “adaptable to mood swings.” Some participants valued younger members of staff and those who had personal experiences of cancer. Staff were particularly valued who are passionate about TYA care and who “actually enjoy working with TYAs!”

Communication was clearly important to participants. They consistently reported wanting general characteristics of professionals—to be honest, tactful, sincere, and sensitive. They also wanted professionals to ensure that TYAs were the focus of communications and had the opportunity to contribute to conversations and decision-making. This may emphasize the unique position of TYA wanting neither the family centered approach to communication of children's services nor the patient-centered approach of good adult cancer care. Participants requested to be well informed about their cancer and treatment, but more specifically to have this information presented in a language appropriate to their age, without staff being “patronizing.”

International Charter of Rights for Young People with Cancer

Over 85% of participants were in agreement with the appropriateness of each statement in the Charter (Table 4).³¹ Seventy percent of participants reported that their Charter rights had been upheld during their care. The right that was upheld the least was fertility preservation. Only 63.1% of participants felt that they had been adequately supported and informed about this issue. Northern Europe consistently had the lowest percentage of participants who agreed that their rights had been upheld, with only 26.1% of participants agreeing that their right to receive age-appropriate support had been upheld. The rights may be more likely to be upheld in parts of Europe with specialist TYA services.

Table 4.

Participants Who Agreed or Strongly Agreed with the Charter of Rights, and Whether, in Their Experiences, These Rights Had Been Respected

International Charter of Rights for Young People with Cancer ²⁶ Young people with cancer have the right to:	Agreed with statement %	Agreed this right had been respected %
1. Receive education about cancer and its prevention, including early detection	96.6	68.7
2. Be taken seriously when seeking medical attention and receive the earliest possible diagnosis and speedy referral for suspected cancer	97.7	73.4
3. Have access to suitably qualified multidisciplinary medical specialists with significant experience in treating cancer in this age group	95.7	81.0
4. Information about and reasonable access to clinical trials and treatment that has been clinically trialed with people in their age group	93.4	70.5
5. Receive age-appropriate support, including, but not limited to, psychosocial, community, and palliative support services	97.0	72.4
6. Empowerment in making decisions supported by full and detailed explanation of all treatment options and long-term effects of the disease enabling them to actively influence their care	88.0	70.5
7. Fertility preservation, as well as information and counseling concerning short-term and long-term effects of cancer and treatment, which affect fertility	94.7	63.1
8. Have access to specialized treatment and services in age-appropriate facilities alongside their peers	92.3	65.5
9. Financial and practical support to minimize the burden of the disease during treatment	93.3	65.5
10. Elimination of all forms of discrimination, during and beyond treatment, in education, vocation and insurance, or in the community	94.7	70.1

While the charter was supported, only 23.9% of participants were aware of the Charter. Western Europe had the highest percentage (43.5%) of their participants who were aware of the Charter.

Research priorities

The most frequently endorsed area for research was “monitoring after treatment,” which was followed by “communication between professionals and young people,” “research about cancer,” “fertility preservation,” and “preparing to go back to work/school” (Table 5).

Table 5.

Future Research Priorities

Future research priorities	Frequency
Monitoring after treatment	172
Communication between professionals and young people	169
Research about cancer	169
Fertility preservation	165
Preparing to go back to work/school	160
The effect on family and friends	154
Delay in diagnosis	148
Long-term follow-up care	147
Promoting healthy life styles	137
Healthcare funding and insurance coverage	116
Financial worries about having cancer	113
Communication between professionals	105
Having a choice in your care and treatment and about what happens to you	103
Clinical trial entry	96
End-of-life care	90
Moving from children's to adult services (transition)	74

Discussion

We report the largest survey of the perspectives of TYAs within Europe, across 12 different languages. The sample size and broad geographical and cultural reach of the survey have provided a unique insight into the way that TYAs perceive their care across Europe over recent years and what they want for the future. In addition to the insights provided by the young people, this has been a valuable collaboration between TYA professionals and their patients across Europe.

TYAs believed that the optimum age for TYA care was 16–20 years and 18 was at the cusp: both too old for a children's ward and too young for an adult ward. This supports the fundamental need for TYA-specific care: two-thirds of the sample were explicitly in favor of TYA services, despite only 9% reporting receiving care in a TYA-specific ward.

The availability of TYA-specific services varied across Europe and this survey highlighted the relative scarcity of places of care specifically for TYAs. The majority of TYAs were treated in children's wards, but despite this, 75% still felt they were treated as a TYA. The presence of a TYA-specific unit may not be necessary or sufficient for a TYA to feel that they have been treated in an age-appropriate manner. What TYAs identify are professionals who appreciate their specific medical and psychosocial needs and have access to age-appropriate facilities. Survey responses to the research priorities of young people demonstrate a focus on specialization of services and survivorship care. While it is clearly possible to provide all elements of TYA-specific care in many environments, it may be more feasible to achieve and maintain the specific range of professional skills through healthcare policy in clinical departments that specialize in TYA care.

There were differences geographically in services provided, but remarkable consensus among those reporting in this study about the key features of TYA-specific care these TYA want now and in the future, despite their substantial demographic geographical and cultural diversity. Many of the observations about needs and wishes for services made by TYA in individual nations previously seem to hold true for this wider more diverse group. A difference may be that in any “hierarchy of needs,” young people in regions of Europe who may have less good clinical equipment or access to tests, prioritize that over décor and style.

The Charter provided a useful way of assessing how TYAs felt about their rights as young people with cancer and their care. Despite agreeing with the contents of the International Charter of Rights, most TYAs were previously unaware of its existence. It appears that the Charter needs to be more comprehensively disseminated if it is to have a European impact.

A major limitation of this study is the convenience “snowball” sample. Some demographic and clinical groups that were better represented than others; the sample did not cover the full range of tumor groups seen in TYA. The population may have been somewhat self-selected by their views, but there was a diversity of responses to many items. Despite this limitation, the survey has provided some interesting and valuable insights into the TYA population to inform the developing specialist TYA services. Future research in this area may benefit from comparing the outcomes of this survey to elsewhere, including North America and Australia. The survey used questions derived from the experience of TYA professionals and it may be interesting to use established TYA-specific patient-reported outcome measures to further investigate the experiences of this population as these are developed and validated.

Conclusion

This study provides an insight into what TYAs across Europe consider as specific aspects of their cancer care, how they perceive TYA care can be improved, the desired attributes of the professional caring for them, and what topics they believe to be important areas of research. There is no reason to believe from this service-user data, with its limitations, that wider European action to develop TYA services should set its policy and objectives at a national rather than a European level, while of course there will be pragmatic and political limitations to that. We plan to continue to work together as a European network, alongside the young people whom we care for, to improve both the outcomes and experiences of those we treat.

Footnotes

Acknowledgments

We wish to acknowledge professionals within the ENCCA community who were involved with the development of the questionnaire, translation of text, participant recruitment, and distribution of the survey. The research leading to these results has received funding from the European Union's Seventh Framework Program for research, technological development, and demonstration under grant agreement no HEALTH-F2-2011-261474.

Author Disclosure Statement

No competing financial interests exist.

Appendix A

Appendix Table A1.

Survey Questions

Participant information

Country

How old were you when you first had cancer?

How old are you now?

What type of cancer did you have?

What are you doing with your life now?

Whom do you live with?

What treatment did you have?

About your treatment

Where did you have your treatment?

When you were in hospital, what type of ward or outpatient department was it?

What did you think of the ward? Was there anything that could be improved?

Did the doctors, nurses etc. treat you as though you were a child/teenager or young adult/older adult/other?

At what age do you think that teenagers would be “too old” to be in a children's ward?

At what age do you think that teenagers would be “too young” for an adult ward?

When you were older, did you have to move from a children's ward/service to an adult ward? If you answered “yes,” how did this make you feel? For example, did you have any preparation for it?

Do you think there should be wards and outpatient or clinic areas that are ONLY for the use of teenagers and young people with cancer?

If you answered “yes,” please can you tell us at what age you should be able to use it?

If you answered “yes,” what sort of equipment and facilities would you like in the ward that makes it different from children's or adult wards?

Please can you tell us how you would like the professionals to treat you—what qualities do you think they should have?

The International Charter for young people with cancer

Did you know that there is an International Charter of Rights for Young People with Cancer?

How far do you agree with each of the statements in the International Charter of Rights for Young People with Cancer? When you were treated, was this right respected?

And finally…

Please can you let us know what YOU think are the MOST important aspects about young people having cancer that we should do research about.

Would you be interested in being part of an online group of young people who will be able to advice the professionals across Europe about the care of young people with cancer? If so, please leave your email address in the box below. (optional)

Do you have any comments about any aspects of this survey or about your experiences that you would like to tell us about? (optional)

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