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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 824 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 4 826 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 827 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. 828 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 829 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. References 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. Haase JE, Phillips CR (2004) The adolescent/young adult experience. J Pediatr Oncol Nurs 21:145–149 Albritton K, Bleyer W (2003) The management of cancer in the older adolescent. Eur J Cancer 39:2584–2599 Bleyer A (2005) The adolescent and young adult gap in cancer care and outcome. Curr Probl Pediatr Adolesc Health Care 35:182–217 Harlan LC, Lynch CF, Keegan TH et al (2011) Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv 5:305–314 Zebrack B, Block R, Hayes-Lattin B et al (2013) Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer 119:201–214 Smith AW, Bellizzi KM, Keegan TH et al (2013) Health-related quality of life of adolescent and young adult patients with cancer in the United States: the adolescent and young adult health outcomes and patient experience study. J Clin Oncol 31:2136–2145 Smith AW, Parsons HM, Kent EE et al (2013) Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE Study. Front Oncol 3:1–11 Abrams AN, Hazen EP, Penson RT (2007) Psychosocial issues in adolescents with cancer. Cancer Treat Rev 33:622–630 Zebrack B, Isaacson S (2012) Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol 30: 1221–1226 Nightingale CL, Quinn GP, Shenkman EA, Curbow BA, Zebrack BJ, Krull KR, Huang IC (2011) Health-related quality of life of young adult survivors of childhood cancer: a review of qualitative studies. J Adolesc Young Adult Oncol 1:124–132 Mercadante S, Vitrano V, Catania V (2010) Sexual issues in early and late stage cancer: a review. Support Care Cancer 18:659–665 Sundberg KK, Lampic C, Arvidson J, Helström L, Wettergren L (2011) Sexual function and experience among long-term survivors of childhood cancer. Eur J Cancer 47:397–403 Tierney DK (2008) Sexuality: a quality-of-life issue for cancer survivors. Semin Oncol Nurs 24:71–79 Fan SY, Eiser C (2009) Body image of children and adolescents with cancer: a systematic review. Body Image 6:247–256 Larouche SS, Chin-Peuckert L (2006) Changes in body image experienced by adolescents with cancer. J Pediatric Oncol Nurs 23: 200–209 Arnett JJ (2000) Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 55:469 Parsons HM, Harlan LC, Lynch CF et al (2012) Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol 30:2393–2400 Bellizzi KM, Smith A, Schmidt S et al (2012) Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer 118:5155–5162 832 19. 20. 21. 22. 23. 24. 25. 26. Support Care Cancer (2016) 24:823–832 Epelman CL (2013) The adolescent and young adult with cancer: State of the art—psychosocial aspects. Curr Oncol Rep 15:325–331 Keegan TH, Lichtensztajn DY, Kato I et al (2012) Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv 6:239–250 Zebrack B (2008) Information and service needs for young adult cancer patients. Support Care Cancer 16:1353–1360 Kent EE, Smith AW, Keegan TH et al (2013) Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer. J Adolesc Young Adult Oncol 2:44–52 Tsangaris E, Johnson J, Taylor R et al (2014) Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review. Support Care Cancer 22:947–959 Tindle D, Denver K, Lilley F (2009) Identity, image, and sexuality in young adults with cancer. Semin Oncol 36:281–288 Lincoln YS, Guba EA (1985) Naturalistic inquiry. Sage, Beverly Hills Sandelowski M (1995) Qualitative analysis: what it is and how to begin. Res Nurs Health 18:371–375 27. D'Agostino NM, Penney A, Zebrack B (2011) Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer 117:2329–2334 28. Barakat LP, Alderfer MA, Kazak AE (2006) Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. J Pediatr Psychol 31:413–419 29. Park CL, Wortmann JH, Hale AE, Cho D, Blank TO (2014) Assessing quality of life in young adult cancer survivors: development of the Survivorship-Related Quality of Life scale. Qual Life Res 23:2213–2224 30. Rosenberg RS, Lange W, Zebrack B, Moulton S, Kosslyn SM (2014) An outdoor adventure program for young adults with cancer: positive effects on body image and psychosocial functioning. J Psychosoc Oncol 32:622–636 31. Ramphal R, Meyer R, Schacter B, Rogers P, Pinkerton R (2011) Active therapy and models of care for adolescents and young adults with cancer. Cancer 117:2316–2322 32. Zebrack B, Chesler MA, Kaplan S (2010) To foster healing among adolescents and young adults with cancer: What helps? What hurts? Support Care Cancer 18:131–135