Download Assessing the psychosocial needs and program preferences of

Support Care Cancer (2016) 24:823–832
DOI 10.1007/s00520-015-2849-8
ORIGINAL ARTICLE
Assessing the psychosocial needs and program preferences
of adolescents and young adults with cancer
Lamia P. Barakat 1,2 & Liana R. Galtieri 1 & Dava Szalda 1 & Lisa A. Schwartz 1,2
Received: 13 March 2015 / Accepted: 6 July 2015 / Published online: 21 July 2015
# Springer-Verlag Berlin Heidelberg 2015
Abstract
Purpose Adolescents and young adults (AYA) are a developmentally distinct cancer group, vulnerable to psychosocial late
effects and with a range of unmet psychosocial needs. We
sought to better understand psychosocial care needs and program preferences to inform development of more easily accessible and effective AYA psychosocial programs.
Methods AYA on and off treatment for cancer (n=111, ages
12–25 years) were approached during an outpatient clinic visit
and completed a survey as part of a quality improvement
initiative. The survey comprised an open-ended question on
challenges related to cancer and treatment and closed-ended
questions on access to and preference for various services and
programs. Qualitative analyses were used to summarize
themes for most significant challenges, and descriptive statistics were used for closed-ended questions.
Results Most common themes for challenges included treatments and associated physical changes, barriers to pursuit of
academic/vocational goals, and social isolation. For preferred
program focus, AYA ranked highest increasing strength and
endurance/reintegration into sports and dealing with physical
changes resulting from treatment. AYA’s preferred modalities
for program delivery were one-on-one/in person and message
boards/Facebook. Most of the sample indicated that lack of
awareness prevented their accessing available programs.
* Lamia P. Barakat
[email protected]
1
Division of Oncology, The Children’s Hospital of Philadelphia, 3501
Civic Center Blvd., 10th floor CTRB, Philadelphia, PA 19104, USA
2
Department of Pediatrics, Perelman School of Medicine, University
of Pennsylvania, 3501 Civic Center Blvd., 10th floor CTRB,
Philadelphia, PA 19104, USA
Conclusions New information was identified that can be used
to address access barriers and to offer AYA psychosocial programs in formats that might improve interest and accessibility.
Ongoing evaluation of AYA psychosocial programs is recommended to determine acceptability, feasibility, and effectiveness to meet the evolving needs of AYA patients with cancer.
Keywords Adolescent and young adults . Cancer .
Health-related quality of life . Psychosocial programs
Adolescents and young adults with cancer (AYA) are
understudied and underserved [1]. AYA are developmentally
distinct from younger children and older adults in terms of
biology, length of time to diagnosis, their need for broader
and more intense psychosocial care, significant barriers to
treatment compliance, and the impact of cancer on sexuality
and fertility [2]. While medical treatments for pediatric and
adult cancers have advanced over the past few decades, treatment outcomes for AYA with cancer have remained stable [2,
3]. In addition, in research and clinical care, AYA with cancer
are not distinguished from younger children or adults, and it is
uncommon for AYA to participate in clinical research trials
[3]. Many AYA treated in adult facilities report a lack of ageappropriate psychosocial services [4, 5], which can negatively
impact their physical and psychosocial health-related quality
of life (HRQL) [6, 7]. An important implication of these
unique factors is that services provided for AYA with cancer
should better address the specific challenges and goals of the
AYA age group.
During cancer treatment and after treatment ends, AYA
strive to maintain HRQL and psychosocial functioning, while
their care providers struggle to develop and implement appropriate, effective psychosocial care [6, 7]. Psychosocial challenges for AYA with cancer include understanding their
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diagnosis, treatment-related side effects, interpersonal difficulties in remaining connected with peers, and becoming independent of their families in terms of self-care, decisionmaking, and education/employment during and after treatment [8, 9]. As AYA move off treatment, quantitative and
qualitative research has identified key domains of AYA
HRQL spanning physical and psychosocial functioning, including physical, body image, psychological, social, and
fertility/sexuality that are affected by cancer and treatment
[10]. Specifically, body image and sexuality are two major
concerns for AYA [11–13], and AYA experience negative
changes in body image that can lead to lowered self-esteem
[14, 15]. When Larouche and Chin-Peukert [15] interviewed
AYA, many described feeling like they Bdon’t look normal^
and described their body as looking ugly and/or sick. Another
challenge for AYA is adjusting to school and work. In addition, a key part of AYA development is establishing a sense of
identity and autonomy [1, 16]. In terms of independence, cancer can impact an AYA patient’s progress and success in
school or the workplace [17], interfering with future occupational plans. Bellizzi and colleagues [18] noted that physical,
occupational, and financial areas of functioning were negatively impacted for AYA, further increasing the dependence
on parents associated with having cancer and hindering the
typical trajectory of identity exploration and autonomy from
caregivers [8, 19].
Data collected through the AYA HOPE Study [4] demonstrated that the psychosocial needs of AYA with cancer are not
met and AYA with cancer need more age-appropriate services.
This finding is echoed by other published research [6, 7,
20–22] including a recent mixed methods literature review
and qualitative study [23]. Zebrack [21] described that among
patients diagnosed with cancer between ages 15 and 35 years,
98 % expressed a need for more information about their illness, 76.3 % expressed a need for mental health counseling,
and 65.7 % expressed a need for information about fertility
and fertility preservation. Among the AYA who expressed a
need for a specific service, 50 % reported that their needs were
unmet. In other studies, these unmet needs range from information to social needs such as 75 % of AYA endorsing the
need for a support group and 29 % of AYA endorsing the need
for in-home nursing [20]. Similarly, Smith and colleagues [7]
demonstrated that one third of surveyed AYA had at least one
service need that was not being met; the most common
unmet needs were mental health services and social supports including peer-to-peer interactions. Moreover,
when AYA were surveyed 6–14 months after diagnosis,
43 % indicated a need to meet and connect with peer
survivors and 25 % indicated a need to talk about their
cancer experience with friends and families [22].
Unfortunately, having any unmet need is associated with
lower HRQL, worse mental health, and worse physical,
emotional, and social functioning [6, 7, 24].
Support Care Cancer (2016) 24:823–832
Although prior research has identified AYA developmental
challenges, limitations to AYA HRQL, and unmet needs, additional information is critical for developing and
implementing effective services. The purpose of the current
study was to inform the development of AYA psychosocial
programming by evaluating what existing services AYA find
helpful, what additional services they want, access barriers,
and how best to format services to increase access. Through
a quality improvement initiative using a survey informed by
AYA with cancer, we sought to gain a better understanding of
psychosocial care needs and programming preferences from
AYA’s perspective so that we may build more easily accessible
and effective AYA psychosocial programs.
Methods
Participants
Potential participants, AYA with cancer ages 12 through
29 years and treated for cancer at the Cancer Center (or in
follow-up), were identified by clinic nurses or child life specialists and approached during an outpatient clinic visit over a
6-month period by one of three graduate research assistants
(psychology, nursing, and medical students). In order to sample a diverse group of AYA with a range of needs, there were
no other inclusion or exclusion criteria other than age. All
participants were able to complete the survey in English.
Our Cancer Center is one of the nation’s largest cancer programs exclusively dedicated to children and is home to a center for pediatric cancer research. The center consists of 50
inpatient and bone marrow transplant beds and a dedicated
outpatient oncology clinic, which sees approximately 75 patients daily. The program admits approximately 550 new cancer patients each year (25 % of whom are AYA) and provides
follow-up care to an additional 3600 children. Programs and
services include inpatient and outpatient oncology services
(Leukemia/Lymphoma Service, Solid Tumor Service,
Neuro-oncology Service), the Oncology Day Hospital, and
programs in Stem Cell Transplantation, Behavioral
Oncology, Survivorship, Palliative Care, and extensive clinical and laboratory research programs.
One hundred and eleven AYA patients completed the survey; a little more than half (52.4 %) were female. Mean age at
time of survey completion was 17.37 years (SD=2.73, range=
12 to 25 years); mean age at diagnosis was 14.88 years (SD=
3.91; range=0–23 years). Most AYA (~70 %) reported that
they were on active treatment at time of interview. Those
patients off treatment had been off treatment for an average
of 20.40 months (SD = 23.05, range ≤1 to 108 months).
Participation rate was nearly 100 % with only a few AYA
refusing participation due to not feeling well or not enough
time due to their clinic schedule.
Support Care Cancer (2016) 24:823–832
825
Measurement
In an iterative process, we developed the survey with feedback
from our AYA Patient Steering Committee (see Fig. 1). At the
time of survey development, the committee was made up of
15 AYA (ages 15–24 years old) who were on treatment or
followed in our Survivorship program, nominated for membership by their medical team, and volunteered to provide
input on psychosocial programming. To gather feedback, we
presented the goals of the needs assessment (to assess the
psychosocial needs of our AYA patients with cancer and evaluate how we might improve psychosocial services provided to
this group of patients) and an initial draft survey (that had been
developed through a collaborative process among multidisciplinary members of the Psychosocial Services Program team).
Detailed notes were taken on feedback on the initial draft
during a regularly scheduled meeting of the Steering
Committee. After changes were made based on their feedback, the Steering Committee reviewed the survey again to
finalize the questions, wording, and format. The final survey
was comprised of seven questions and took about 20 minutes
to complete either in paper-and-pencil self-report or interview
format. The survey began with an open-ended, free-response
question asking about patients’ challenges during their cancer
Adolescent and Young Adult Cancer Needs Assessment Survey
The Adolescent and Young Adult (AYA) Patient Steering Committee was established several
months ago under the guidance of our oncologists, nurses, psychologists, and social workers
with the goal of better addressing the unique psychosocial needs of our AYA patients. This
survey will help the committee identify needs and will be used to work towards creating and
implementing new AYA-specific programming and resources. All responses are anonymous.
Current Age: ______
Age at diagnosis: ______
Please circle one:
On Treatment / Off Treatment
Length of time off treatment (in months): ______
1. What are/were the greatest challenges with having cancer: With family? With friends? In
school?
____________________________________________________________________________
____________________________________________________________________________
2. Rate the effectiveness of these already existing programs (this reflects a subset of options):
Program
Resources accessed through the
CHOP Cancer Center website
American Cancer Society Look
Good/Feel Better for Teens
Camps / Retreats
Family Education Day Teen Events
Beyond Cancer Day Teen Activities
Arts and Crafts Activities
Artist-in-Residence Program
Music Therapy / Art Therapy
Video games available in Day
Hospital or Inpatient Unit
AYA Patient Steering Committee
Teen to Teen Support (Facebook
page)
Wish Granting Programs
Do you
know about
this
program?
Have you
accessed /
participated in
this program?
Rate the helpfulness of the program
(if you have accessed it)
Please circle one for each program
Yes/No
Yes/No
NA
1
I feel
neutral
about it
2
Yes/No
Yes/No
NA
1
2
3
4
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
Yes/No
NA
NA
NA
NA
NA
NA
NA
1
1
1
1
1
1
1
2
2
2
2
2
2
2
3
3
3
3
3
3
3
4
4
4
4
4
4
4
Yes/No
Yes/No
Yes/No
Yes/No
NA
NA
1
1
2
2
3
3
4
4
Yes/No
Yes/No
NA
1
2
3
4
Fig. 1 Adolescent and young adult needs assessment survey: sample questions
Never
accessed
Not
helpful
Some
what
helpful
3
Very
helpful
4
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Support Care Cancer (2016) 24:823–832
3. What gets in the way of your utilizing AYA programs more frequently? (Please circle all that
apply)
a. I didn’t know about the AYA programming
b. I was not interested in AYA programming
c. I did not think AYA programming would help me
d. Other: _______________________________
4. Circle the three content areas of programming that you think you would benefit from the
most?
Advocating for oneself in school and community
Coping with cancer and treatment
Dealing with physical changes as a result of treatment
Education of your family and friends about cancer
Friendships after cancer
Improving body image
Increasing strength and endurance/Reintegration into sports
Meeting other AYA cancer patients and survivors
Romantic relationships after cancer
Reintegration into school/employment
Transition to adult health care settings
Other: _____________________
Other: _____________________
5. Which of the following do you feel best about as a way to connect with other AYA patients
and cancer survivors? (Check all that apply)
___One on one, in person
___One on one, over the internet
___Discussion groups led by AYA
___Discussion groups led by health professional (psychologist, social worker, etc.)
___Message boards (i.e. Facebook)
___AYA-only social gathering event
___Other: ____________________
___Other: ____________________
6. What types of events would you like to see? (Examples include: a regularly scheduled
meeting of an AYA discussions group, a meet-and-greet with other AYA cancer
patients/survivors, AYA game tournaments, trips to baseball games, AYA conferences, AYA
retreats, other AYA outings)
____________________________________________________________________________
____________________________________________________________________________
7. Please add additional thoughts or ideas you have about AYA programming at the Cancer
Center
____________________________________________________________________________
____________________________________________________________________________
Fig. 1 (continued)
experience (i.e., what are/were your greatest challenges with
having cancer with family? with friends? in school?) to support AYA in framing responses to the remaining survey questions based on needs. Next was a table with a list of current
programs offered through our Cancer Center in which participants were asked to indicate whether or not they were aware
of the program, whether or not they had accessed the program,
and how helpful they found the program on a Likert-type scale
of 1 (not helpful) to 4 (very helpful), if they had used it. A
series of questions asking about barriers to accessing programs, preferences for types of services/programming, and
format (in person versus online, one-on-one versus group)
followed. The final question on the survey was an openended question asking for additional feedback.
Support Care Cancer (2016) 24:823–832
Procedures
Surveys were completed independently or in interview format
depending on the preference of the AYA in the clinic waiting
room or day hospital. Efforts were made to find a quiet spot in
the clinic for the survey when completed in interview format.
The Division of Oncology Quality Improvement Committee
approved this quality improvement initiative aimed at
informing expansion of AYA psychosocial services programming in the Cancer Center; thus, informed consent was not
required. Consultation with The Children’s Hospital of
Philadelphia IRB determined that the study was not human
subject research since the project was a quality improvement
initiative to improve care.
Data analyses
Qualitative data (responses to the first and last questions) were
coded using established qualitative data analytic techniques
for descriptive, content analysis of phenomenological data
[25, 26]. All responses were entered into an Excel spreadsheet
and were used to develop the coding frameworks that reflected
specific challenges (for question 1) or specific recommendations (for question 7). Then, the two coders reviewed data to
finalize the frameworks and begin to identify codes and categories. To ensure reliability, the primary coder identified
themes and established the coding scheme and the second
coder recoded the qualitative data responses using the emerging scheme. To track how codes, categories, and themes were
developed, we maintained an audit trail through memos noted
in Excel about the process of coding. Final codes were then
reviewed and discussed among the coders and lead author.
Descriptive analyses were used to summarize data for the
remaining questions on helpfulness of existing programs, recommendations for types of programming, preferred format,
and access barriers. Analyses were conducted to compare subgroups of AYA (on treatment versus off treatment at the time
of survey completion, 17 and younger vs 18 and older at the
time of survey completion, and 17 and younger vs 18 and
older at the time of diagnosis) on responses to programs
accessed, ratings of programs, recommended content of programming, format for programming, and barriers to accessing
programs using chi-square analyses or independent samples t
tests as appropriate. To protect against experiment-wise error,
we applied a conservative p value of 0.01.
Results
Challenges and resiliencies
The most frequently noted individual challenges endorsed in
response to the first open-ended question were being in the
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hospital/undergoing medical procedures (27.5 %), being treated differently (27.5 %), physical effects of treatment (24.8 %),
and not being able to work/job difficulties (23.9 %) (see
Table 1). However, all school-related issues, including problems keeping up with schoolwork, problems transitioning
back to school, and difficulty concentrating on schoolwork,
collectively made up nearly 40 % of noted challenges for these
AYA patients on and off treatment. Underscoring these responses, a participant noted, BMy greatest challenge was having to readjust my life and not do as much because of physical
and mental limitations.^ Many patients commented on how
one of the most frustrating aspects of being diagnosed with
cancer was that people treated them Bdifferently.^ They
expressed not wanting to be defined by their illness but instead
wishing to be seen and understood beyond their condition.
These AYA with cancer also highlighted that age-appropriate
teenage worries about social acceptance and finding
love/romance seemed to be intensified by the experience of
being a cancer patient.
Importantly, nearly a third (31.2 %) of AYA expressed positive impacts and resiliencies although they were not asked
about resiliencies directly (see Table 1). The resiliencies most
frequently noted were supportive friends (44.1 %) and family
(32.4 %), having a positive attitude (23.6 %), and pride
in finishing their education (20.6 %). Additional positive impacts noted, but at a lower frequency, were supportive teachers, successful outcome of physical therapy,
and successful outcome in working with a psychologist
or social worker.
Subgroup comparisons
For AYA 17 years and younger compared to AYA 18 years
and older at the time of survey completion, there was only one
significant difference across responses to programs accessed,
ratings of programs, recommended content of programming,
format for programming, and barriers to accessing programs.
AYA ages 17 and younger at the time of survey completion
rated scholarship program materials as significantly more
helpful (p=0.004) and exhibited a trend to less frequent endorsement of transition to school/employment as a preferred
program (p=0.019). For AYA 17 years and younger at age of
diagnosis compared to AYA 18 and older at diagnosis, there
was only one significant difference in which AYA who were
younger at diagnosis were more likely to access camps/
retreats than AYA who were older at diagnosis (p=0.000).
There were no significant differences in comparisons of responses of AYA on treatment at the time of survey completion
to those off treatment at the time of survey completion.
Because there were few significant differences across the subgroups, survey data are aggregated and reported across the
AYA sample.
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Table 1 Reported AYA
challenges and resiliencies
Support Care Cancer (2016) 24:823–832
Challenge
Being in the hospital/undergoing medical procedures
Being treated differently (being Bbaby-ed,^ bullying, extra attention)
Frequency (N=109)
%
30
30
27.5
27.5
Physical effects of treatment
27
24.8
Not being able to work/job difficulties (finding a job, keeping a job)
Missing friends
26
19
23.9
17.4
Lack of physical activity/giving up physical activity (sports)
Feeling at a different point in life than peers/not having a Bnormal^ life
18
18
16.5
16.5
Trying to plan for the future/feeling as if life is Bon hold^
16
14.7
Losing autonomy/need for independence
School attendance/home schooling/needing to quit school
14
14
12.8
12.8
Keeping up with schoolwork
14
12.8
Hair loss/body image/confidence
10
9.2
Feeling sick or fatigued in general
Trying to keep a positive attitude/being stressed out
10
10
9.2
9.2
Missing out on things you looked forward to (prom, camp, a trip, college)
Emotional/grasping the diagnosis
10
9
9.2
8.3
Trouble concentrating in school
Giving up activities that you love
Traveling far for treatments
8
7
6
7.3
6.4
5.5
Family/friends do not understand
Transitioning into school or work (or life in general)
Feeling like a burden on family
6
5
3
5.5
4.6
2.8
3
3
2
Frequency (N=34)
15
2.8
2.8
1.8
%
44.1
11
8
32.4
23.6
Explaining to others that you have cancer (talking about it)
Romantic relationships
Financial difficulties
Resiliency
Supportive friends
Supportive family
Positive attitude
Finished high school/college education
7
20.6
Supportive teachers
Positive outcome from psychologist or social worker help
Positive outcome of physical therapy
4
3
2
11.8
8.8
5.9
Existing psychosocial programs
Psychosocial program preferences
From the list of existing programs in our Cancer Center, on a
scale from 1 to 4, the programs rated as most helpful were
wish-granting programs (M=3.90, SD=0.36), events for survivors of cancer (M=3.43, SD=0.79), Artist-in-Residence
programming (M=3.42, SD=0.99), creative arts therapies
(M =3.39, SD = 0.87), arts and crafts activities (M =3.36,
SD = 0.71), and camps/retreats (M = 3.30, SD = 0.95) (see
Table 2). Those programs rated as most helpful were also
the most frequently accessed (each by at least 50 % of the
AYA patients). However, many AYA patients were unaware
of the range of available psychosocial services. The range of
endorsement of awareness ranged from 15 to 75.5 % depending on the specific service.
For preferred program focus, AYA patients ranked highest: increasing strength and endurance/reintegration into sports
(48.1 %), dealing with physical changes resulting from treatment
(43.5 %), coping with cancer and treatment (39.8 %), improving
body image (30.6 %), educating family and friends about cancer
(30.6 %), reintegration into school/employment (29.9 %), and
friendships after cancer (23.1 %) (see Table 3). AYA’s preferred
modalities for delivery of programs were one-on-one/in person
(56.5 %), message boards/Facebook (50.9 %), one-on-one via
the Internet (40.7 %), and discussion groups led by AYA
(31.5 %) (see Table 4). These preferences contrast with the finding that only 25.7 % of AYA patients had accessed resources via
the Cancer Center website (i.e., Facebook Discussion Group,
Support Care Cancer (2016) 24:823–832
Table 2 Ratings of helpfulness
of current AYA programs
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Rate the helpfulness of the following resources (if accessed):
Accessed, %
M
SD
Range
Wish Granting Foundation
59.6
3.90
0.36
2–4
5.8
3.43
0.79
2–4
Artist-in-Residence program
Music therapy/art therapy
12.3
41.9
3.42
3.39
0.99
0.87
1–4
1–4
Arts and crafts activities
44.3
3.36
0.71
2–4
Camps/retreats
11.5
3.30
0.95
2–4
Video games
Family to Family Support
49.1
11.4
3.29
3.27
0.89
1.00
1–4
1–4
Scholarship programs
Resources accessed through the web
15.4
22.6
3.21
3.14
1.08
0.91
1–4
1–4
Resources accessed through the Cancer Center website
CHOP’s Beyond Cancer Fun Day
25.7
3.12
0.86
1–4
Family Education Day AYA events
AYA Patient Steering Committee
1.0
3.7
2.50
2.50
0.71
1.38
2–3
1–4
American Cancer Society Look Good/Feel Better program
1.0
2.00
0.00
2–2
website links to AYA resources) and only 22.6 % had accessed
resources through the Internet more generally.
In response to the open-ended question asking for additional suggestions for programming, one participant wrote, BI
would like an AYA discussion group so I can see and understand how other patients or survivors are dealing with their
illnesses.^ In addition, access to information and resources
about their condition was one of the most important requests
of these patients including written information (in the form of
a handbook) and online information and supports. For example, a newly diagnosed AYA patient mentioned that she
wanted to learn as much as she possibly could, and she spent
most of her time searching the Internet for information.
Furthermore, AYA patients felt like they had something
unique to offer other newly diagnosed AYA and pediatric
patients with cancer and that mentorship would serve as
means to resiliency.
Table 3 Recommended AYA
programming
Barriers to accessing programs
Most of the sample indicated that lack of awareness (74.3 %)
prevented their accessing available programs. This barrier was
followed by lack of interest (21.1 %) and feeling too ill to
participate (13.8 %). Very few AYA did not participate because they believed a program would not be helpful (6.4 %),
they were too busy (5.6 %), or they tried programs but did not
like them (0.90 %).
Discussion
The needs of AYA with cancer are unique and diverse,
resulting from interactions of the AYA development period
with the demands of cancer and its treatment [1, 2, 5, 6, 19,
27]. The extent to which these needs are not met through
What type of programming do you think you would benefit from the most?
Frequency (N=107)
%
Increasing strength and endurance/reintegration into sports
52
48.1
Dealing with physical changes as a result of treatment
Coping with cancer and treatment
Education of your family and friends about cancer
Improving body image
Reintegration into school/employment
Friendships after cancer
Meeting other AYA cancer patients and survivors
Romantic relationships after cancer
Transition into adult health care settings
Advocating for oneself in school community
Other: help with getting into college
47
43
33
33
32
25
24
15
15
12
2
43.5
39.8
30.6
30.6
29.9
23.1
22.4
14.0
14.0
11.1
1.9
830
Table 4 Recommended format
for AYA programming
Support Care Cancer (2016) 24:823–832
What do you feel is the best way to connect with other AYA patients and cancer
survivors?
Frequency
(N=108)
%
One on one, in person
61
56.5
Message boards (Facebook)
55
50.9
One on one, over the internet
Discussion groups led by AYA
44
34
40.7
31.5
Discussion groups led by health professional
AYA-only social gathering event
29
27
26.9
25.0
Other: via email
6
5.6
Other: via phone
3
2.8
current psychosocial services programming in both pediatric
and adult cancer centers can further limit AYA HRQL [4, 6, 7,
20–22]. Confirming the AYA literature, AYA patients in this
sample reported facing the significant challenges with school
reentry or meeting vocational goals, maintaining friendships,
and managing treatment-related side effects. Based on quantitative data, AYA find a number of existing psychosocial
programs to be helpful; however, only a minority is aware
of the range of programs and resources. While AYA patients in this sample expressed a preference for online
resources and social support, less than half the sample
had accessed available web-based resources. In addition,
recommendations regarding psychosocial programming
were broad and highlighted difficulties in AYA accessing
programs that meet their specific needs during and after
treatment. Of note, there were few differences in responses
across AYA subgroups based on age at time of survey
completion, age at time of diagnosis, and whether AYA
were on or off treatment at the time of survey completion
indicating that there is consistency in the needs of AYA
across this developmental period and the cancer treatment
continuum.
Based on the qualitative data, limitations to HRQL associated with cancer and treatment challenges paralleled domains
noted by Nightingale and colleagues [10]. These included
concerns about body image, family life, friendships and romance, and school. Changes in appearance, ability to participate in regular school activities and athletics, increased family
stress, and heightened uncertainty over future educational and
work endeavors were the most immediate concerns. However,
consistent with prior studies [10, 28], AYA with cancer in this
sample also noted resiliencies. AYA survivors experience
growth through cancer diagnosis and treatment and have a
more positive outlook toward the future with a stronger sense
of identity and confidence in overcoming adversity. In this
study, AYA responses to the survey echoed these resiliencies
in that participants endorsed having a positive attitude to their
cancer experience, recognizing the family and friendship support they received, and acknowledging success in
rehabilitation.
Regarding unmet needs, similar to prior research [23], social connection, for information and for support, was a central
theme across survey responses. Moreover, AYA noted interest
in mentoring other AYA patients and younger children with
cancer to provide support to get through the difficult times
they had also experienced. In designing programming, health
care providers for AYA with cancer must recognize that patients are still developing cognitively, emotionally, and socially, particularly in the social domain in terms of peer connection, fostering and maintaining intimate relationships, and
peer approval [1, 16, 19]. Adolescence is a period of opportunity to create more complex social networks, connect with
peers, develop close relationships, and explore their sexuality.
However, AYA with cancer struggle to connect with their
peers because they are uncomfortable talking about their cancer experience and also may have insecurities and feel physically unattractive [8, 19]. Related, AYA identified unmet
needs in the physical domain in terms of symptom management, changes in physical appearance, and feeling ill. AYA’s
sense of identity and self-image can be threatened due to
physical side effects of many cancer treatments, and many
AYA with cancer experience weight gain or loss, baldness,
and delayed sexual maturity that result in struggles with body
image [8]. To the extent possible, it is important for health care
providers to assess, discuss, and address these physical challenges with their AYA patients.
Clinical implications include the need for increased efforts
to anticipate specific psychosocial needs and provide tailored
support. The starting point for intervention services is appropriate assessment of needs. New assessments are being developed to better target domains in HRQOL that are specific to
AYA. Park and colleagues [29] recently designed the Late
Adolescence and Young Adulthood Survivorship-Related
Quality of Life Scale (LAYA-SRQL) that targets evaluation
of domains that are specific to AYA concerns and includes
factors of relationships, dependence, health care, and
education/career [29]. The LAYA-SRQL is unique in that it
addresses important, specific AYA needs and provides an assessment that is developmentally informed and appropriate. In
addition, Schwartz and colleagues are developing a goal-
Support Care Cancer (2016) 24:823–832
based measure of AYA HRQL that limits response shift and
accounts for AYA goals and potential impact of health-related
demands on goal attainment (Presented at the 2014 meeting of
the International Society of Pediatric Oncology Society).
D’Agostino, Penney, and Zebrack [27] emphasize the importance of promoting a sense of normalcy for AYA with
cancer to keep them developmentally on track by targeting
support to developmental tasks most likely to be delayed
due to cancer (i.e., helping AYA with cancer to establish autonomy, cultivate a personal identity, form strong and intimate
relationships, and progress in school/work). Rosenberg and
colleagues [30] provide evidence that programs that support
AYA can improve self-esteem and self-compassion and alleviate depression in cancer survivors. Suggestions to guide
development of AYA psychosocial services, focusing on
how health care providers can most effectively communicate
with AYA and provide the best care for these patients [31, 32],
include the importance of direct, honest communication
with AYA patients, facilitating communication with a
patient’s social support network and involvement in
school and/or work to help AYA with cancer maintain
a sense of normalcy. In addition, appropriate and effective care for AYA with cancer should include a combination of medical care, psychosocial support, and an
age-appropriate environment.
Conclusions from this study are limited by the structure of
quality improvement projects in our setting including lack of
information on demographics of the AYA patients and their
specific diagnoses and treatments. In addition, because data
collection took place in the public spaces of the waiting
rooms, some challenges (such as fertility concerns) may have
been underreported. It is important to consider that program
recommendations are based on individual’s opinion and may
not reflect what AYA will access in real time. However, new
information was identified that can be used to address access
barriers and to offer AYA psychosocial programs in formats
that might improve interest and accessibility. As a result of this
QI project, our cancer center now offers a monthly in-person
AYA activity group and quarterly major activities including
sporting events and a graduation ceremony. We enhanced our
Facebook page and developed a series of AYA podcasts. In
addition to staff education to increase knowledge and comfort
speaking with AYA about sexual health, including physical
limitations and body image, we are working to increase opportunities for physical activity for AYA patients and survivors. Because lack of awareness of programs is a major barrier
to accessing services, innovative advertisement and use of
online formats are needed to address the widespread lack of
knowledge about the AYA program among patients. For example, our cancer center now advertises activities on our
website, Facebook pages, and through flyers in clinic and
distributed by staff. Finally, ongoing evaluations of AYA psychosocial programs must be made regularly to determine
831
acceptability and feasibility of these psychosocial programs
to meet the evolving needs of AYA patients with cancer.
Acknowledgments We thank the members of the AYA Patient Steering
Committee for their feedback on the survey and Colleen Kase and Sarah
Voisine for their contributions to qualitative data analyses.
Conflict of interest The authors declare that they have no competing
interest.
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