Support Care Cancer DOI 10.1007/s00520-016-3396-7

ORIGINAL ARTICLE

What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients Christabel K. Cheung 1 & Brad Zebrack 2

Received: 23 February 2016 / Accepted: 23 August 2016 # Springer-Verlag Berlin Heidelberg 2016

Abstract Purpose Cancer treatment programs and community-based support organizations are increasingly producing information and support resources geared to adolescent and young adult patients (AYAs); however, systematically-derived knowledge about user preferences for these resources is lacking. The primary purpose of this study was to generate findings from informed AYA cancer patients that resource developers can use to create products consistent with AYAs’ expressed preferences for information and support. Methods Utilizing a modified Delphi technique, AYA cancer patients identified barriers to optimal AYA cancer care, cancer resources that address their needs, and specific characteristics of cancer resources they find helpful. The Delphi panel consisted of a convenience sample of 21 patients aged 18– 39 years, who were diagnosed with cancer between ages 15– 39 and were no more than 8 years out from cancer treatment at the time of the study. Survey data were collected in three consecutive and iterative rounds over the course of 6 months in 2015. Results Findings indicated that AYA patients prefer resources that reduce feelings of loneliness, create a sense of community or belonging, and provide opportunities to meet other AYA

patients. Among the top barriers to optimal cancer care, AYAs identified a lack of cancer care providers specializing in AYA care, a lack of connection to an AYA patient community, and their own lack of ability to navigate the health system. Participants also described aspects of cancer information and supportive care resources that they believe address AYAs’ concerns. Conclusion Information derived from this study will help developers of cancer information and support resources to better reach their intended audience. From the point of view of AYA cancer patients, optimal cancer care and utilization of information and support resources requires that cancer support programs foster meaningful connections among AYA patients. Results also suggest that patient resources should equip AYAs with practical knowledge and skills necessary to navigate the health system and advocate for themselves. Given patient interest in social media, future research should further investigate optimizing online resources to serve the AYA cancer population.

* Christabel K. Cheung [email protected]

Cancer is the leading cause of disease-related death in adolescents and young adults (AYA) aged 15–39 years in the USA [1]. However, improvements in cancer survival rates for AYAs are not comparable to those observed in older adult and pediatric populations since the 1970s [2, 3]. Haase and Phillips argue that the invisibility of AYA study samples in research has been a contributing factor to poorer outcomes for this population [4]. In recent years, the oncology community’s acknowledgement of the disparity in survival outcomes for AYA cancer patients has led to growing research attention to

Brad Zebrack [email protected] 1

Luskin School of Public Affairs – Department of Social Welfare, University of California, Los Angeles, 3250 Public Affairs Building, Box 951656, Los Angeles, CA 90095-1656, USA

2

University of Michigan School of Social Work, 1080 S. University, Ann Arbor, MI 48109-1106, USA

Keywords Patient resources . Information needs . Adolescent . Young adult . Cancer . Survivor

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the psychosocial experiences of cancer survivorship for this population. In contrast to adolescents and young adults who were diagnosed with cancer as younger children, young people diagnosed with cancer as adolescents and young adults experience a unique set of biopsychosocial challenges in terms of quality of life and long-term survival at a transitional life stage, including increased health risks, comorbidities, and threats of mortality that may surface at various times across the remaining balance of their lives [2, 5, 6]. Spanning adolescence through emerging adulthood, the developmental tasks of AYAs range from identity formation, newfound autonomy, and sexual experimentation at the younger end of the continuum, to career establishment, family responsibility and often, divorce, at the other end. AYAs’ still-developing cognitive, emotional, and social skills translate into psychosocial needs that are distinct from other age groups facing a cancer diagnosis [7]. Consistent with their developing cognition and interpersonal skills, AYA cancer patients often lack the maturity and skills to incorporate the experience of cancer into their lives, and have difficulty maintaining personal motivation through long periods of treatment if they are unable to achieve what they perceive to be a reasonable quality of life [8]. Following the establishment of a sense of personal identity, Arnett’s (2000) [9] developmental theory suggests that adolescents’ (defined as ages 10–18) passage into emerging adulthood (defined as ages 18–25) is influenced by social and cultural factors. Arnett (2004) characterizes emerging adulthood as the age of identity exploration, instability in life plans, self-focus, feeling in-between, and the age of possibilities [10]. It is the second stage in a five-stage progression across the lifespan [11]. A cancer diagnosis can disrupt the mastery of developmental tasks within an already unstable period, and affect the achievement of self-esteem and independence [7]. These effects, in turn, may potentially interfere with cancer treatment adherence and subsequent survival [12]. The wide-ranging information and support needs of the AYA cancer patient population are evidenced in the literature. A study of 879 AYAs aged 18–39 years found more than 60 % of participants expressing a desire or need for age-appropriate cancer information, information about diet, exercise, nutrition, complementary and alternative health services, infertility information, mental health counseling, and camp or retreat programs for young adults [13]. A population-based study of 523 AYAs using cancer registry data indicated that upwards of 50 % of participants reported unmet needs for information about their cancer treatments, risks for cancer recurrence or relapse, long-term side effects of treatment, as well as complementary and alternative therapies. There was no significant difference in unmet information needs by type of cancer [14]. These unmet information and support needs identified by AYA cancer patients highlight the diversity of experiences

within this age-defined category. An example of a successful online cancer resource responding to these needs is the Livestrong Foundation’s portfolio of Internet-based resource products, which includes an organization website, Facebook, Twitter, Instagram, Youtube, and Pinterest, as well as mobile phone apps for tracking fitness and nutrition goals (http://www.livestrong.com/myplate/). Livestrong has over 1.6 million fans on Facebook and over one million followers via Twitter.

Purpose of the study AYA oncology care and support programs increasingly produce information and support resources targeted at AYAs, however, there is a lack of qualified systematic knowledge about the user preferences of today’s AYA patients in terms of cancer resources to help ease the burden of coping with life after a cancer diagnosis. Deriving information directly from AYA cancer patients, the current study investigated AYA preferences for cancer information and support resources that respond to their unique psychosocial needs, thereby elucidating what AYA cancer patients want for themselves. Investigators aimed to: (1) identify, from patients’ viewpoints, factors that help as well as hinder AYAs’ abilities to cope with cancer, treatment, and associated life disruptions, and (2) identify components of cancer resources that AYA patients would find most relevant and useful. The primary purpose of this study was to generate findings, from qualified AYA cancer patients that resource developers can use to create products relevant to the issues, concerns, and preferences of AYAs living with cancer.

Methods Investigators surveyed a convenience sample of AYAs using a modified Delphi technique. Widely used as a forecasting tool in health services research since its development by the RAND Corporation in the 1960s, Delphi methodology combines quantitative and qualitative exploration of subjective conjectures surrounding a given topic in order to inform plans for future initiatives [15]. It elicits opinions from experts, to obtain a group response and consensus [16]. The Delphi method employs an iterative process of anonymous data collection to ensure validity and reliability of responses, in which experts’ qualitative responses from one round inform subsequent survey rounds, to ultimately reach consensus by way of statistical analysis [17, 18]. (Fig. 1). An expert is defined as one who demonstrates credible knowledge regarding a particular issue and the ability to articulate a broad perspective on it [17]. This structure enables the assessment of the extent of agreement on opinions and the resolution of disagreement, by

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Round 1 Survey: Invesgators ask 3 open-ended quesons

Round 2 Survey: Invesgators summarize responses to create survey items for

Round 3 Survey: Invesgators sort highest rated & ranked items for final consensus

AYA Experts answer open-ended quesons

AYA Experts rate & rank survey items for each of the 3 quesons

AYA Experts rank highest priority items to build consensus

Fig. 1 Modified Delphi method used in this investigation

allowing each expert to rank order and rate responses from all experts [19]. Over the course of 6 months, January-July of 2015, administration of sequential online questionnaires was interspersed with feedback from participants to iteratively inform subsequent online questionnaires, thus gaining reliable consensus of authentic opinions on the study’s central questions. The goal of the first round survey was to produce an unlimited amount of items to be appraised by panelists in subsequent rounds. The goal of the round two survey was to re-circulate all responses from the first round back to participants, for them to give corresponding ratings of importance and rankings of priority for each response. In the third and final survey round, the goal was to arrive at final consensus on the highest priority items for each of the three central questions, by feeding back the top 7–8 items generated in round two for participants to rank order.

Sample and participant selection Investigators identified and recruited a convenience sample of AYA cancer patient experts through the principal investigator’s professional network of community-based advocates and involvement with critical mass: The Young Adult Alliance (www.criticalmass.org)—an interdisciplinary collaborative of 150+ organizations serving AYA cancer patients. Eligibility criteria included young people aged 18–39 years and diagnosed with any form of invasive cancer between the ages of 15–39 years, and involvement in the organization as a staff member, volunteer, or active member. Participants were determined to be demonstrated Bexperts^ based on verbal verification from the respective referring organization that

the prospective participant was an active participant in their organization as a volunteer or staff person and thus could articulate an experience of cancer that extended beyond their own. The researchers upheld ethical standards by ensuring the anonymity of respondents’ identities and their attributed responses throughout the study. The sample/Delphi panel ultimately consisted of 21 AYA cancer patients (Table 1). Participants were 19–39 years old, with cancers diagnosed between ages 15–32 years, and were no more than 8 years out from cancer treatment at the time of the study. Both the mean and median age for this sample was 30 years. No Delphi panelists opted out of participation throughout the study duration.

Round one Procedure In the first of three online survey rounds, investigators asked the Delphi panelists to provide a text response to three open-ended questions as follows: (1) list what you believe to be potential barriers or obstacles to receiving the best possible care for adolescents and young adults with cancer, (2) What are the resources and support programs or services that you use or used in the past that you found helpful? (3) What about these resources and/or services did/do you find helpful? Responses were analyzed for content and converted into survey items. All respondents completed surveys within 3 months, and no reminders to complete surveys were necessary in this first round. Table 1 Demographics of Delphi Survey panelists (n = 21)

Frequency Gender Male Female Race/ethnicity White Black Hispanic/Latino Asian/Pacific Islander Age in years at diagnosis Teens 20 s 30 s Residence Northeast USA Midwest USA South USA West USA Canada UK

8 13 14 4 2 1 8 7 6 2 4 6 7 1 1

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Barriers to AYA cancer care: mean ratings of importance and highest rankings

Item Lack of ability to navigate health care system Lack of AYA programs, physicians, and care Lack connection to AYA cancer patient community Little time to make serious medical decisions Lack ability to advocate for oneself Limited knowledge of health insurance Depression Health insurance restrictions on cancer screening and treatment Limited knowledge about health and wellness Cancer misdiagnosed due to young age False stereotype that AYAs will be OK Geographic distance to AYA cancer programs Loneliness Low energy Physician unwilling to consider treatment options Patients' physical limitations Social norms that doctor is right Receiving treatment in adult setting Transportation to AYA cancer programs Physicians unable to answer AYA concerns Receiving treatment in pediatric setting Unwanted dependency on parents for medical decisions

Mean (Times Ranked in Top 3) 3.52 (4) 3.48 (7) 3.29 (5) 3.29 (4) 3.24 (6) 3.24 (2) 3.24 (1) 2.71 (8) 3.14 (4) 2.90 (3) 2.86 (2) 2.86 (1) 2.81 (3) 2.76 (1) 2.62 (3) 2.57 (1) 2.52 (2) 2.48 (2) 2.48 (0) 2.38 (0) 2.33 (1) 2.29 (2)

Items above line were included in the final survey round. 0 = not at all important, 4 = extremely important

Data analysis Upon receiving completed round one questionnaires, two members of the research team sorted and edited responses to eliminate redundancy, and achieve mutual agreement and consistency in the wording of similar ideas. This process of cross-coding between investigators was crucial to ensuring reliability and validity in the process of generating accurate codes to serve as survey items in Round Two.

Data analysis Upon receiving the completed round two surveys, investigators calculated the mean and standard deviation of scores for ratings of importance on a Likert scale ranging from 0 to 4 for each of the survey items. As well, the number of times each of the survey items was ranked first, second, or third was calculated, i.e., frequency.

Round three Round two Procedure The round two questionnaire consisted of all responses derived from the first round for each of the three central questions. For each item, panelists were asked to: (1) score the importance of each item on a five-point Likert scale with scores ranging from zero to four and anchors ranging from Bnot at all important^ to Bextremely important,^ as well as (2) rank order the three most important items in response to each of the three central questions. Largely due to the greater length of time between round one and round two for participants that joined the study at the start of recruitment, half of the participants required 3–5 email, phone, and text reminders to complete the round two, which required 2 months to collect all data.

Procedure To this end, items were selected for the third round survey based on being the most highly endorsed items in the round two survey, in terms of aggregate rankings and average degree of importance, in the second round. To reduce the number of survey items for the round three survey and ultimately achieve consensus, decision rules were used to select seven to eight survey items for each question for inclusion in the final round three survey. The research team determined that seven to eight survey items for each question sufficed to capture a sizeable range of options. All responses to the round three survey were collected within one month, with half of participants requiring 1–2 email, phone, and text reminders to complete the online questionnaire. Data analysis Following the previously mentioned decision rules, the most highly rated items were identified, followed by

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those with the highest ranking. To achieve 7–8 items for each section, items were included in the round three survey that were rated >3.2 or ranked 6+ times for questions one and two and >3.3 or ranked 7+ times for question three (see Tables 2, 3, and 4). Consensus was represented by calculating the frequency that respondents named items among their top three priorities.

Results Round one Responses to question one—Barriers to AYA cancer care— were organized into 23 distinct survey items and illustrated a broad set of biopsychosocial concerns, including mental health, access to care, communication with providers, and informal support (Table 2). Ten items (43 %) highlighted barriers related to AYAs’ interactions with the health system such as Black of ability to navigate health system,^ Bhealth insurance restrictions on cancer screening and treatment,^ and Breceiving treatment in adult setting.^ In response to question two—helpful AYA resources/support—20 survey items were developed from responses that reflected helpful resources and support (Table 3). Lastly, in response to question three—characteristics of helpful resources/support—15 survey items reflected characteristics of helpful resources (Table 4).

Table 3

Round two For each of the three questions, Tables 2, 3, and 4 display the items, their average ratings of importance, and the number of times they were ranked among the top three highest priority items. The majority of items receiving high ratings of importance were also frequently ranked as top priorities. Correspondingly, the lowest rated items, did not receive high rankings of importance. For example, in response to question two–Helpful AYA resources/support, the two items rated of lowest importance, Bvideos about real AYAs with cancer^ and Binformation about AYA cancer provided in hard copy format^ were ranked zero times among the top three highest priority items. Round three Table 5 lists results from the round three survey, in which panelists rank ordered the top three barriers, the top three helpful patient resources, and the top three characteristics. Many of the most highly rated and ranked items from round two were confirmed as top priorities in the round three final consensus. For example, in response to question two–helpful AYA resources/support, Bsupport from family^ was ranked among the top three priorities with exceptional frequency in round two, and the salience of this item was reinforced in round three, where it was ranked the second top priority in the final consensus.

Helpful AYA cancer resources: mean ratings of importance and highest rankings

Item Organizations that offer financial help Support from family Support from friends Psychological counseling services AYA cancer info provided by a health professional Social media - Facebook, Twitter, Instagram for AYAs with cancer Opportunities to share or be role model Trusted AYA cancer advocacy and support organizations Information about AYA cancer provided in electronic format Online discussion boards for AYAs with cancer Support from church or faith-based individuals or groups Organizations for my cancer type Social events for AYAs with cancer Peer support or patient-survivor matching program Retreats for AYA cancer survivors National organizations for general cancer population AYA oncology program Videos about real AYAs with cancer Information about AYA cancer provided in hard copy format

Mean (Times Ranked in Top 3) 3.57 (5) 3.43 (12) 3.43 (3) 3.19 (4) 3.19 (3) 3.05 (6) 3.00 (6) 3.14 (0) 3.10 (3) 3.10 (3) 3.10 (2) 2.90 (4) 2.71 (2) 2.71 (1) 2.48 (5) 2.38 (1) 2.19 (3) 1.76 (0) 1.62 (0)

Items above line were included in the final survey round. 0 = not at all important, 4 = extremely important

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Characteristics of helpful AYA cancer resources: mean ratings of importance and highest rankings

Item Created a sense of community or belonging Truthful and trustworthy Addressed non-medical cancer survivorship issue Discussed AYA cancer issues that may be painful and/or "weird" Reduced feelings of loneliness Affordable Provided opportunities to go out and meet other AYAs in-person Made me feel like a normal teenager or young adult Easy to find and access Friendly and empathetic tone Actively engaged in social media that’s kept current or updated with frequent posts and current content Presented science and health information in easy to understand language Space for self-expression Normalized anxiety, stress, diminished functioning, Educational information and insights about AYA cancer

Mean (Times Ranked in Top 3) 3.76 (8) 3.71 (8) 3.52 (6) 3.52 (4) 3.38 (6) 3.33 (2) 3.29 (5) 3.19 (7) 3.24 (4) 3.10 (3) 3.05 (2) 3.05 (3) 3.05 (3) 3.05 (2) 2.95 (0)

Items above line were included in the final survey round. 0 = not at all important, 4 = extremely important

Discussion The primary goal of the current study was to derive consensus on the priorities for cancer information and support resources that would best serve AYAs living with cancer. Findings suggest that in order to improve AYA’s perceptions of scarce AYA cancer care programs and services, resource developers should modify their brand presence to be more welcoming and relevant to older teenagers and young adults – patient-centered for AYAs. For example, the adolescent and young adult program at the University of Southern California—AYA@USC—boasts a welcoming website for AYA patients, featuring social media buttons, a live Twitter feed, photos of real AYA program participants, video testimonial from an AYA patient, and

Table 5 Consensus rank order of barriers to care, helpful resources and characteristics of helpful resources for AYA cancer patients Barriers to AYA care

Helpful resources

Characteristics of helpful resources

1 Lack of AYA programs, physicians, and care 2 Lack connection to AYA cancer patient community 3 Lack ability to navigate health care system 1 Social media - Facebook, Twitter, and Instagram for AYAs with cancer 2 Support from family 3 Support from friends 1 Reduced feelings of loneliness 2 Created a sense of community or belonging 3 Provided opportunities to go out and meet other AYAs in person

a large BQuestions? Contact Us^ button that links directly to program contact information. In the process of creating and promoting such patient-centered resources that are attractive to AYAs, developers must also consider AYAs’ still-developing cognitive abilities, which may make them more vulnerable to sensationalized or misleading content. Organizations serving AYA cancer patients, therefore, must uphold high ethical standards for curating content in order to optimize benefits to end users and guarantee no harm. Social isolation is a commonly cited problem among AYA cancer patients, and facilitating peer interactions is an important component of their care [5, 20, 21]. AYA cancer patients are often isolated from their healthy peers by a life-threatening disease and a sudden expectation to summon the courage and wherewithal to survive cancer amidst a health care system that they do not yet have the skills to navigate and comprehend. This experience is compounded by the transitionary nature of passage into emerging and young adulthood, a time at which young people are neither fully an adolescent nor fully an adult, but partly each [9]. Furthermore, the transition from emerging adulthood to adulthood is profoundly characterized by values for self sufficiency such as accepting responsibility for oneself, making independent decisions, and becoming financially independent [9]. Cancer has the potential to retard this development [22–24]. Connection to an AYA patient community with same-age peers, as well as the ability to independently navigate the health care system were identified as important impediments to optimal AYA cancer care. Expanding the reach of programs that facilitate online communications between AYA cancer patient peers could minimize AYAs’ perceptions of isolation.

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Supporting AYAs’ desire to independently navigate the health care system could come in the form of Internet-based resource tools such as social media and mobile apps that are designed to be easily accessible and developmentally appropriate for AYAs, and promote self-efficacy. Delphi panelists indicated that opportunities to receive direct support from family and friends are vital help to AYAs in coping with life after a cancer diagnosis. As well, social media was identified among the top priorities. Social media developers can enhance the AYA experience by advancing resources that facilitate real-time social, emotional, and practical connection and support from family, friends, and AYA cancer patient peers, either via popular social media outlets or more personalized cancer support websites with cancer-specific content and feat u r e s , s u c h a s M y L i f e l i n e . o r g , Ty z e . c o m , a n d CaringBridge.org. Likewise, Internet-based sites and social media targeted at AYA cancer patients can help build community and create a sense of belonging among peers regardless of whether they attend in-person gatherings. For example, Stupid Cancer hosts an annual national conference that is widely publicized via Facebook, Twitter, Instagram, Tumblr, Vine, LinkedIn, and Google+, and their website features a live chat function that allows any website visitors to solicit an immediate response from the organization. Based on this finding, AYA cancer patients may also benefit from online resources that educate and support their family and friends. Limitations A number of sampling limitations must be noted. First, investigators used the broad definition of AYA as capturing ages 15–39 years, which is most commonly referenced by cancer care providers and researchers, as well as the National Cancer Institute [4]. With respect to life course and psychosocial issues, however, stark differences lie between the developmental life stages of a 15-year-old student re-entering high school and a 39-year-old working parent. Although the study sample was well-balanced in its representation of AYA patients diagnosed in their teens, 20s and 30s, all respondents were over 19 years of age at the time of the study. Future studies should include perspectives from more respondents who are still in their teens and across various sociocultural groups to better reflect variation in responses due to age/developmental/sociocultural differences. Finally, use of convenience sampling to convene a Delphi panel limited the representativeness of the study. For example, despite the broad reach of a referring organization, they may more easily recruit prospective participants that reside in geographic proximity to their offices. Future research involving personal interviews with AYAs could be used to triangulate findings reported here and provide member validation of these results.

Conclusion Given that the AYA patient care population has gained greater attention within psychosocial oncology in recent years, eliciting feedback from qualified AYA cancer patients is vital to the process of developing supportive care resources. Creating resources that improve psychosocial outcomes for AYAs living with cancer, by enabling continued development of essential life skills and addressing critical care needs, requires vigilance to what these young patients subjectively want for themselves. Empirical investigation on AYA preferences elucidates trends in the use of cancer resources, and explains ways to more effectively deliver information about life after cancer. Today, the social media context prevails and is embraced by many AYAs, which raises further questions about how social media may be optimized for this age-defined population. Acknowledgments America.

Project funded by SeventyK and TeenCancer

Conflict of interest None

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