A Midwest Stakeholder Evaluation of an Adolescent and Young Adult Cancer Survivor Needs Assessment Survey

Abstract

Purpose:

Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative approach with patient and clinician stakeholders to meet the needs of the AYA population at a large Midwestern Cancer Center.

Methods:

We recruited a 10-member AYA Advisory Board (AB) from our Cancer Center patients, and met five times over 9 months to discuss supportive care and the NA-SB. We recruited a multidisciplinary group of oncology clinicians to assess content validity and conducted interviews with nine clinician stakeholders to discuss implementation.

Results:

The AB generated a 59-item–modified NA-SB, retaining most of the original NA-SB items and adding several more. Five items with concerns for relevance and/or clarity were revised to create the final 58-item–modified NA-SB. Priorities for implementation were identified by AB and clinician stakeholders.

Conclusions:

The modified NA-SB thoroughly reflects supportive care needs of our Midwestern AYA cancer survivors. When implemented, the tool may facilitate patient-care team communication and provide data to prioritize development of new supportive care resources. AYA cancer survivors have unique supportive care needs that are insufficiently addressed by current care models; using the modified NA-SB may help address those needs, leading to improved AYA outcomes.

Introduction

Approximately 87,050 adolescents and young adults (AYAs) were diagnosed with cancer in the United States in 2022, representing a leading cause of disease-related death among AYAs.^1,2 Survival rates are worse among AYAs (diagnosed between ages 15 and 39) with breast cancer, colorectal cancer, and soft tissue sarcomas compared with younger and older individuals with the same cancers.^3–7 Possible explanations include molecular differences affecting treatment efficacy,⁸ lower rates of insurance coverage, care-seeking delays, and decreased participation in clinical trials.⁹

Cancers diagnosed during this complex developmental period have a profound impact on emotional function, behavioral issues, interpersonal relationships, and social factors during and after active treatment.^5,10,11 At the time of diagnosis, AYA life plans are often derailed, adding to the stress of an already serious health situation.^12,13 Disruptions in everyday life contribute to psychological distress, and negatively impact cancer care and quality of life.^14–17

Over one-third of AYA cancer survivors have experienced at least one unmet service need, including practical support (insurance/financial planning, peer support) and health care needs (physical therapy, mental health services) associated with poorer quality of life.^18–20 Oncology practices may lack infrastructure emphasizing assessment of AYA cancer survivors' supportive care needs. A majority of cancer survivors report their psychosocial care needs went unmet because their provider did not discuss them and patients were unaware of available support services.¹⁵ However, these needs are modifiable with psychoeducational interventions, case management, peer support, and other services.^21–24

Investigators have begun to address this problem by developing tools to systematically assess AYA cancer survivors' supportive care needs. Clinton-McHarg et al²⁵ developed and tested psychometric properties of the Cancer Needs Questionnaire-Young People (CNQ-YP), designed to capture unmet physical, psychological, and social needs of AYA cancer survivors. Haines et al²⁶ refined the CNQ-YP through an iterative user-centered design process. A key feature of the resulting Needs Assessment & Service Bridge (NA-SB) is the organization of items within categories that map to clinical resources.²⁶

While Haines et al²⁶ described the development of NA-SB, no further evaluations of the tool have been published. Evaluation in different settings is necessary since NA-SB was designed at an National Cancer Institute (NCI)-designated comprehensive cancer center with a well-established AYA oncology program, which is present in only half of NCI-designated cancer centers.²⁷ Further, resources available to AYA cancer survivors likely differ geographically, including distance from oncology providers. Regional variation in cancer care across the United States is common in adult age groups and likely impacts AYAs.^28–30

We endeavored to obtain Midwest U.S. patient and clinician stakeholders' recommendations regarding how best to revise and administer NA-SB at our center. We intentionally included rural cancer survivors as well as AYAs on active treatment to address prior under-representation of these populations.^25,26 Our aims were to incorporate AYA cancer survivors' modifications of NA-SB, analyze the content validity of the modified NA-SB with clinicians, and identify considerations for NA-SB implementation.

Phase 1: AYA Stakeholder Assessment and Recommendations

Methods

This project was reviewed and approved by the Health Sciences Institutional Review Board at the University of Wisconsin-Madison, and met criteria for exempt human subjects research (study No. 2021-0436).

Design, setting, and sample

We used a stakeholder focus group design and an iterative process centered on perceptions of NA-SB and recommendations for its modification and implementation. A 10-member AYA Advisory Board (AB) was recruited from patients seen at a Midwestern NCI-designated Comprehensive Cancer Center who responded to a supportive care needs assessment survey. Survey participants were adults (19–39 years old) who had been diagnosed with cancer between the ages of 15 and 39 years.

To be eligible for the AB, participants had to speak English, have an internet-connected device, and agree to participate in secure virtual group meetings. Recruitment focused on AYAs diagnosed with either breast cancer or sarcoma. We included both a more prevalent AYA diagnosis (breast cancer) and a less common diagnosis known to be associated with high supportive care needs^31,32 (sarcoma) to incorporate a broad spectrum of lived patient experiences.

Purposive sampling was used to select a diverse AB, aiming for representation of ∼40% patients with sarcomas, 25% males, 40% non-White, 50% on active treatment, and 25% rural residents. The study's project manager reviewed a study information sheet explaining consent details with all potential participants. The original intention was to have 12 AB members but due to difficulty confirming two participants, the final AB was convened with 10 members. Consent was implied by participating in the AB meetings.

Procedure

A series of four 90-minute AB meetings were held over consecutive months through secure videoconferencing. Each meeting was led by the primary investigator (PI) and a trained group facilitator following an agenda and facilitator's guide. AB meetings were designed to maximize member participation through keeping cameras on and using tools including visual thumbs up/down voting, embedded polls, collaborative digital whiteboards, and directly calling on all participants. AYA AB members received a US$75 gift card after each meeting.

Data collection

Throughout AB meetings, our team focused on understanding if existing NA-SB content was appropriate and inclusive of all AYA cancer patient needs and how items could be redesigned. Specific goals of each meeting are detailed in Table 1.

Table 1.

Goals of Each Advisory Board Meeting

Meeting	Goals
1	• Orientation to the project goals, timeline, and role of stakeholders • Establish community agreements for working together • Ensure shared understanding of “supportive care” • Elicit list of AYA supportive care needs
2	• Introduce NA-SB and map previously identified supportive care needs to NA-SB categories; generate new categories • Discuss which needs should be assessed, especially in cases where resources may not be readily available
3	• Elicit input on implementation of NA-SB in clinical practice • Discuss restructuring options for NA-SB content • Discuss how to handle items that cross NA-SB categories
4	• Review and vote on proposed items changes: wording changes, new items, and assignment of individual items to categories • Discuss NA-SB instructions and item response options • Discuss reordering NA-SB categories
5	• Review CVI results • Discuss item revision following clinician stakeholder input • Endorse final NA-SB modifications

AYA, adolescent and young adult; CVI, content validity index; NA-SB, Needs Assessment & Service Bridge.

Analyses

AB meetings were audiorecorded, transcribed verbatim, and transcripts were analyzed using directed content analysis.³³ Concurrent with AB meetings, two team members (C.L.-M. and K.E.M.) independently read and coded each transcript. A deductive approach was used in categorizing NA-SB item content. An inductive approach was used for all other transcript content. The researchers developed initial codes after the first AB meeting and revised them for analysis of subsequent meeting transcripts through an iterative process.

Results

A total of 10 AYA cancer survivors participated in AB meetings (Table 2).

Table 2.

Characteristics of Adolescent and Young Adult and Clinician Stakeholders

AYA advisory board members (total N = 10)
Characteristic	M (SD), range
Age	29.9 (6.3), 20–38 years
	n (%)
Sex
Female	6 (60)
Male	4 (40)
Race/ethnicity
White	9 (90)
Non-White	1 (10)
Diagnoses
Sarcoma	5 (50)
Breast	5 (50)
Residence
Urban or suburban	7 (70)
Rural	3 (30)
Therapy status
Off active therapy	6 (60)
On active therapy	4 (40)
Clinician stakeholders
Characteristic	Survey participants (N = 23)	Interview participants (N = 9)
	n (%)	n (%)
Professional role
Medicine (physician)	10 (43)	3 (33)
Advanced practice	4 (17)	2 (22)
Provider (NP or PA)
Social work	4 (17)	2 (22)
Psychology	3 (13)	1 (11)
Administration	1 (4)	1 (11)
Patient–family liaison	1 (4)	—
Patient population
Adult	15 (65)	4 (45)
Pediatric	6 (26)	3 (33)
Both	2 (9)	2 (22)
Number of AYA patients cared for per year
0–9	6 (26)	4 (45)
10–20	6 (26)	2 (22)
21–30	5 (22)	2 (22)
31–50	3 (13)	—
≥51	2 (8)	1 (11)
Unsure	1 (4)	—

NP, Nurse Practitioner; PA, Physician Assistant.

Recruitment targets were met for all variables except race and patients actively receiving therapy. In meeting 1, AB members generated a list of 37 unique supportive care needs. At meeting 2, AB members used a collaborative whiteboard to map those needs to the nine existing NA-SB resource categories and create a list of needs that crossed multiple categories (Supplementary Fig. S1). AB members clarified and added new supportive care needs, resulting in a total of 44 unique needs.

At meeting 3, AB members discussed implementation of NA-SB in the clinical setting. They desired flexibility around where the assessment is completed (e.g., at home or in clinic). They recommended the initial assessment be completed with a clinician present to help explain items. AB members noted the timing of administration should maximize clinicians' detection of their evolving needs without being burdensome to the patient, occur both during and after treatment, align with changes in treatment and pivotal events (e.g., disease recurrence, transition between clinics), and consider patient preference for assessment intervals whenever possible. AB members wanted the tool to be available digitally, integrated within the electronic medical record (EMR).

Further, AB members wanted all supportive care needs to be assessed, even if few or no related resources were known. They wanted to make their health care teams aware of their needs to improve communication and increase future identification of resources.

At meeting 4, AB members voted to retain 51 of the original NA-SB items, reword 4 of the original items, and add 18 new items. Items were largely retained within original NA-SB categories. AB members endorsed introductory text for NA-SB, explaining the purpose of the assessment and the option to skip items by marking “Not applicable” for an entire category. During the course of this project, Haines et al. [personal communication] revised NA-SB response options, indicating “I want more help/information about this concern,” “I have enough help with/information about this concern,” or “Not applicable.” AB members expressed a preference for these updated response options.

Finally, AB members endorsed revising the order of supportive care needs categories presented on the tool. Based on their input, a 59-item–modified NA-SB (version 1) was created for further stakeholder evaluation (Supplementary Fig. S2).

Phase 2: Clinician Stakeholder Evaluation

Methods

Design, setting, and sample

A mixed-methods approach was used to obtain evaluations from an expert panel of clinician stakeholders, including a content validity survey and interviews about NA-SB implementation. Oncology professionals were recruited from the same Midwest NCI-designated Comprehensive Cancer Center as the AYA AB. We sought a minimum of 12 experts involved in the direct care or supervision of care for AYA patients across multiple disciplines. All potential participants received a study information sheet explaining consent details. Consent was implied by completing the survey and participating in an interview.

Procedure

Clinicians were invited to participate in a content validity index (CVI) survey of the modified NA-SB (version 1). Clinicians rated the relevance and clarity of each NA-SB item using a 4-point scale (relevance: 1—not relevant, 2—somewhat relevant, 3—quite relevant, 4—highly relevant; clarity: 1—not clear, 2—somewhat clear, 3—quite clear, 4—highly clear), and provided comments about irrelevant or unclear items. Clinicians were also asked to indicate knowledge of existing resources for each need (yes, no, unsure).

Upon completion of the CVI, clinicians indicated willingness to participate in a 60-minute interview about NA-SB implementation in clinical practice. We targeted 10 clinician stakeholder interviews representing diverse disciplines. Investigators developed a semi-structured interview guide from AYA AB members' ideas around implementation, including questions about the utility of the modified NA-SB and considerations for use of the tool in practice. The project manager conducted individual clinician interviews. Participants received a US$75 gift card for their effort.

Analyses

Survey data were analyzed using Polit's CVI approach.³⁴ The item-level CVI (I-CVI) was computed as the proportion of “quite relevant” or “highly relevant” responses for each item. Item clarity was computed as the average of clarity ratings. The research team established a priori decision rules for relevance and clarity scores. An item was retained if its I-CVI was ≥70%. The research team discussed items with an I-CVI of 21% to 69% and a consensus decision was made to retain, revise or drop the item. Items with I-CVI of ≤20% were deleted. Items with a clarity index of ≤3 were revised to improve clarity. Descriptive statistics (n, %) were computed to summarize clinicians' knowledge of resources for each supportive care need.

Interviews were recorded, transcribed verbatim, and analyzed using thematic analysis.³⁵ Using NVivo version 2020 (QSR International), investigators (C.L.-M. and K.E.M.) independently read and coded transcripts and created initial themes and sub-themes. All members of the research team reviewed and provided input on themes and resolved coding disagreements. To ensure credibility of qualitative findings, coding was conducted using a systematic approach.

Coders and study team members represented different oncology disciplines, facilitating researcher triangulation with data analysis and interpretation. To support confirmability, each member involved in coding data documented a memo for each transcript, facilitating bracketing of previous experiences and biases. To support dependability, documents detailing each step were maintained in a web-based platform.

Results

Content validity survey

A total of 23 AYA clinical experts completed the survey (Table 2). A summary of item clarity and relevance scores is provided in Table 3. One item fell below the 70% relevance threshold, and two additional items were noted as borderline (<80%). All items achieved an average clarity score of 3; however, three items were identified as having borderline clarity scores (including the single item with poor relevance). These five items were marked for further discussion with the AYA AB.

Table 3.

Clinician Ratings of Item Relevance and Clarity of Modified Needs Assessment & Service Bridge, Version 1 (N = 23)

Question	Item relevance	Item clarity
Information
1. The status of my cancer	0.96	3.17
2. The short-term side effects of treatment	1.0	3.61
3. The long-term side effects of treatment	1.0	3.52
4. What to do if I have side effects from my treatment	0.96	3.74
5. Concerns that come up after treatment are finished	0.96	3.26
6. How my genetics may or may not have impacted my diagnosis and treatment	0.91	3.17
7. Finding support for living in my area with cancer	0.83	3.04
8. Having resources for family members struggling with my illness	0.91	3.35
9. My ability to travel (both to appointments and to see family/friends)	0.74	3.13
10. How to help other people diagnosed with cancer	0.48	3.04
11. Being a part of research studies	0.87	3.35
Health awareness and wellness
12. Nutrition, diet, or meal plans	0.91	3.57
13. Exercise or physical activity	0.87	3.65
14. Getting enough or better quality sleep	0.91	3.61
15. Smoking or vaping during cancer treatment	0.86	3.68
16. Drug or alcohol use during cancer treatment	0.91	3.68
17. Spiritual support or resources	0.81	3.74
18. Taking part in social activities	0.91	3.43
19. Complementary/integrative therapies (herbal treatment, acupuncture, massage therapy, meditation)	0.96	3.57
Sexual and reproductive health
20. My risk of impaired fertility and my fertility preservation options	0.96	3.52
21. Treating impaired fertility and other options for having children in the future (sperm/egg freezing, artificial insemination, in vitro fertilization, surrogacy, adoption)	0.96	3.43
22. Sexuality and intimacy during cancer treatment	0.96	3.65
23. Sexual side effects of my treatment	0.96	3.57
24. The effects of treatment on long-term hormone changes	0.91	3.36
Communication with my cancer care team
25. Offering to talk to me in private, without my family or friends	0.91	3.68
26. Explaining what they are doing in a way I can understand	0.91	3.61
27. Engaging me in decision making about my treatment and respecting my decisions	1.0	3.64
28. Asking me about my treatment concerns	1.0	3.77
29. Talking to me about moving from pediatrics to adult care	0.77	3.62
30. Talking to me about changing phases of treatment	0.91	3.04
Physical health
31. Physical side effects of cancer and treatment (fatigue, pain, nausea)	0.96	3.87
32. Problems thinking (chemo brain)	0.96	3.39
33. Surgical healing issues	0.91	3.48
34. Managing my medications	0.91	3.65
Emotional health
35. Feeling depressed, anxious, worried, scared, or helpless	0.95	3.86
36. Experiencing survivor's guilt	0.86	3.29
37. Having what I need to cope with my diagnosis	0.95	3.29
38. Worrying about my cancer spreading, returning, or getting another type of cancer	0.95	3.81
39. Being able to talk to people my own age who have been through a similar cancer treatment experience	1.0	3.9
40. Worrying about how my family is coping	0.95	3.76
41. Coping with changes in my dating or romantic life	0.95	3.71
42. Coping with changes in my relationships with my family members or friends	0.95	3.71
43. Feeling concerned that my age makes me different from other patients	0.86	3.48
44. Feeling dependent on others	0.91	3.71
45. Coping with changes in my physical ability	0.95	3.76
46. Coping with changes in my appearance and/or body image	0.95	3.86
47. Coping with changes in my self-esteem	0.91	3.75
48. Coping with not being able to do the same things as other people my age	0.95	3.76
49. Managing the emotional side effects of treatment	0.86	3.43
50. Being able to make plans or think about the future	0.95	3.81
Work and education
51. Resources to help me manage my school life (keeping up with schoolwork, talking with advisors, using a disability office)	1.0	3.95
52. Resources to help me manage my work life (running a business, working with supervisors, what to do if feeling discrimination, how to access assistance)	0.95	3.95
Finances and everyday needs
53. Paying my bills	0.91	3.71
54. Scholarship or loan repayment options	0.90	3.86
55. My health insurance (access/eligibility, coverage, cost)	0.91	3.81
56. Legal advice (disability, visa, discrimination)	0.90	3.67
57. Having childcare during my cancer care appointments	0.91	3.76
58. Having stable housing	0.91	3.71
59. Needing everyday items (clothes, shoes, hygiene supplies, supportive equipment)	0.86	3.62

One clinician survey had sporadic missing responses, resulting in a variable denominator of 22 or 23. Item 10 was subsequently revised to read, How to connect with and support other people in my age group with cancer; Item 30 was subsequently revised to read, Talking to me about changes in my treatment, both planned and unplanned.

Clinicians' knowledge of existing supportive care resources varied, ranging from 20% to 95% for each item. The greatest proportion of clinicians identified supportive care resources for feeling depressed, anxious, worried, scared, or helpless (95%), managing treatment side effects (78%–80%), and nutrition (78%). Few clinicians were aware of resources for childcare during cancer appointments (20%), taking part in social activities (22%), or talking about moving from pediatric to adult cancer care (24%). Encouragingly, resources were identifiable by at least one clinician for each NA-SB item.

Clinician stakeholder interviews

Nine clinicians (Table 2) were interviewed, including three physicians, two advanced practice nurses, two social workers, a psychologist, and an administrator. Qualitative analyses yielded 25 codes and 3 themes; see Table 4 for detailed descriptions of themes and exemplar quotations. Clinicians shared their perspectives highlighting tension between current clinical limitations and a future state workflow to support NA-SB implementation. They agreed that a comprehensive needs assessment is important to provide adequate care for AYA oncology patients while expressing concerns about the practicality of implementation, including how to create a system to meet the needs of patients built on shared accountability.

Table 4.

Qualitative Findings from Clinician Stakeholder Interviews (N = 9)

Theme	Description	Exemplar quotations
Balancing benefit and burden of a comprehensive needs assessment	Clinicians valued the completeness of the modified NA-SB- Particularly called out emphasis on the uniqueness of needs for AYAs- Importance of commitment to evaluating the changing nature of those needs over timeClinicians expressed worry over length of needs assessment- May be perceived as cumbersome for patients and families- Length especially concerning if administered multiple times throughout treatment	“I was quite pleased and impressed with the comprehensive nature of the needs assessment. When I think about doing psychosocial evaluations for any population, you know, there's several domains that I think about, and, you know, with this population in particular, with the AYA population, there are certain aspects of their life and their lifestyle and the transitions from adolescence into young adulthood. There are certain areas that are really important and I, I was quite impressed with, I think, how comprehensive this was, without being overly burdensome.”—Cancer Psychologist“It does seem a bit cumbersome though, for patients and families. It wouldn't be something that I think could be done real quickly.”—Oncology Advanced Practice Provider“I think everybody has a lot of things on their plate, at least in clinic. The people who are traditionally involved in the clinical setting are the nurse, the MA, the physician, and then there's sometimes a nurse practitioner. I would find it difficult for any of us potentially to have additional time to do it. So, I don't know where the bandwidth would be.”—Oncologist
Designing an ideal state that meets the needs of AYAs and clinicians	Clinicians engaged in reflective questioning to describe the systems and personnel that would be needed to implement the modified NA-SB.- Systems would need to be tailored to AYAs in terms of both timing and access- Need for flexibility to fit within existing clinician team structures.Preference to evaluate AYA needs before health care visits and leveraging the electronic medical record to streamline communication and responses to needs across team members.	“I think if you give them this tool right on diagnosis, they're still overwhelmed in just trying to process the diagnosis in itself that this tool is going to fail if it's given too early.”—Oncology Social Worker“Maybe asking at that second time, you know, ‘I just wanted to check in on those areas. Do feel you still have enough information? Do you feel that you need to relook at our tool to see if there are other areas that are affecting you now?’ And giving the choice if they want to recomplete the entire tool versus just looking at the items they filled out initially.” -Oncology Social Worker“Well, I definitely would want to see it prior to the clinic visit. And I think it would be nice to have a little bit of leeway in the event that we need to line up some resources or get some answers for them to make the visit the most fulfilling to them and efficient. So, I do think ahead of time would be really helpful and I'm wondering if that information could be shared at least a week or 2 ahead of their visit.”—Oncology Advanced Practice Provider“Well, you know, I think there's still a number of patients who may not have access to the Internet the way we think they should. I think that this has to be translatable. I think this has to meet the needs of people who are not native English speakers”—Oncologist“It'd be helpful to have someone else, not just the provider having to review these, maybe someone else synthesizing, ‘These are the patient's major concerns, how do we go about addressing these?’ and maybe some automated process to do that.”—Oncologist
Ensuring accountability	Clinicians expressed a sense of shared responsibility for assessing, evaluating, and responding to AYA needs.- AYA needs are best met by an interdisciplinary team- Concerns around ensuring the right team member is matched with the right need.- Challenges with ensuring accountability and closing the loop with addressing AYA needs across multiple clinicians, including lack of knowledge, time, or resources for specific needs.	“Because I think that's part of the issue from the clinician's side is that there's a lack of knowledge of who to refer to for some of these things. And so, it just doesn't get done.”—Oncology Advanced Practice Provider“My other thoughts as I was going through it was just, you know, if someone is marking that they need follow up on these things, who is being triggered to follow up on them? Is it going to be broken apart to different providers? Does the doctor need to follow up on certain parts of the assessment? The social worker on others, maybe a nurse on a different part?”—Oncology Social Worker“Yeah, the accountability piece is really important…I think it's important that everyone see those responses and at least be able to focus on the sections of the tool that apply to them and their practice before meeting with a patient.”—Oncology Social Worker

Phase 3: AYA Advisory Board Endorsement

After clinician data were collected, the AYA AB was reconvened to review and edit the five items with low relevance and/or clarity ratings. AB members then endorsed a final 58-item–modified NA-SB (version 2) (Supplementary Fig. S3).

Discussion

Midwestern AYA cancer survivors endorsed most of the original NA-SB items and identified new supportive care needs. Several new NA-SB items may reflect unique challenges faced by rural AYA cancer survivors and those currently on treatment. For example, AB members identified problems finding support for living in their (rural) area with cancer, and the ability to travel to visit friends and family. Our AB members highlighted concerns about transitioning from pediatric to adult cancer care, which may be a greater challenge for those treated at centers without a formal AYA program.

In addition, our AB members strongly endorsed including an item addressing AYAs' ability to communicate with and support each other, perhaps reflecting a lack of institutional peer support. New and revised NA-SB items largely demonstrated good content validity. Only a single item generated by our AYA AB had a lower than desired I-CVI requiring modification.

Clinicians' awareness of supportive care resources was mixed. While some resources may be built into cancer care services or EMR-integrated referral systems across age groups, clinicians may be unaware of resources for concerns uniquely experienced by AYAs, such as transitions from pediatric to adult care.

Of the 24 supportive care needs for which less than half of the clinician sample knew of existing resources, 13 (54%) represented new or revised items developed by our AB members for the modified NA-SB. This finding demonstrates that AYA cancer survivors experience varied supportive care needs, which may differ from those clinicians commonly anticipate. Variability in knowledge of existing resources emphasizes the need for clinician education.

Implementation of supportive care needs assessment is an ongoing challenge. With respect to structure and administration of the NA-SB, AYA cancer survivors prioritized flexibility over uniformity, reflecting on their broad range of supportive care needs across the survivorship trajectory. AB members wanted options for when, where, and how the assessment was completed, as well as the ability to skip needs categories not currently relevant to them. One point of consistency was the importance of having a clinician available to clarify items and answer questions during the initial NA-SB assessment.

Clinician stakeholders similarly addressed flexibility in implementation. They valued assessment throughout the course of treatment but struggled to endorse a standard approach that would fit current practice models and work across clinical settings. Despite a lack of consensus on specific workflows, there was agreement that the implementation process requires accountability. Clinicians suggested leveraging EMR systems to ensure the assessment was completed and reviewed, with appropriate referrals provided.

Communication outlining who is accountable for follow-up is necessary to promote trust in the assessment. Themes in clinicians' comments about ensuring accountability resonate with a major design goal of the original NA-SB: to directly map resources to each supportive care need. Implementing NA-SB may serve two related and synergistic purposes: to identify and address needs of AYA patients and to gather data about needs of the AYA population served and the institution's capacity to meet those needs. Even in cancer treatment centers with dedicated AYA programs, substantive barriers to implementation of specialized AYA care have been described.³⁶

To our knowledge, this is the first project to modify NA-SB for a clinical setting outside of where it was originally developed. A primary strength of this project was eliciting both AYA survivor and clinician stakeholder perspectives. Further, the iterative approach allowed for identification and refinement of supportive care needs items. The AB drew upon both their personal experiences and knowledge of other AYA oncology patients, creating an extensive list of supportive care needs and remained engaged across several months of meetings, allowing critical reflection on and discussion of a variety of opinions and experiences.

Another strength was the diverse group of clinician stakeholders, including representation from various health professions, direct care providers and administrators, in pediatric and adult oncology, incorporating multiple viewpoints. Moreover, the experts constituted a large panel for the purposes of evaluating content validity.³⁴

Study limitations

Although the AYA AB represented a large swath of our Midwestern patient population, we did not meet inclusion targets for non-White AYA cancer survivors, nor those receiving active therapy, despite attempts to include patients from these demographic categories. Arguably, people with the most difficulty coordinating participation on the AB may be those facing the greatest challenges.

Future research is necessary to understand barriers that prevented non-White AYA cancer survivors from participating on the AB, and if/how they relate to cancer survivorship. All AYA AB members were diagnosed with either sarcoma or breast cancer, and although these two patient populations represent common AYA tumors, we may have heard differing perspectives had we included patients with other types of tumors. We did not repeat the clinician CVI to evaluate items on the final modified NA-SB, nor did we establish scale CVI.

Clinical implications

Cancer survivorship is a complex and highly variable experience for AYAs. Through AYA and clinician stakeholder engagement, we modified NA-SB to meet the needs of our patient population while gaining insight about implementing this tool in clinical practice. Clinical leaders should engage AYA and clinician stakeholders to design sustainable workflows that adequately capture the range of AYA needs and promote cross-continuum accountability to ensure needs are met.

Further, centers should match personnel and resources with implementation workflows and anticipated AYA needs. Other centers, whether they have an AYA oncology program or not, can learn from this experience how best to meet the needs of their AYA patients, contributing to improved psychosocial well-being and survival.

Footnotes

Acknowledgments

The authors thank the members of our Adolescent and Young Adult Advisory Board for their time, dedication, and thoughtfulness throughout this process, representing a diverse array of cancer survivors at all stages of their personal journeys. They acknowledge the tremendous contributions of Project Manager Diana Gutierrez-Meza as well as Susan Tierney, LCSW.

Authors' Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by C.L.-M. and K.E.M. The first draft of the article was written by C.L.-M., K.E.M., and K.K., and all authors commented on previous versions of the article. All authors read and approved the final article.

Author Disclosure Statement

The authors have no relevant financial or nonfinancial interests to disclose.

Funding Information

This project was supported by a Clinical & Community Outcomes Research Award, cosponsored by the University of Wisconsin-Madison Institute for Clinical and Translational Research (National Institutes of Health Clinical and Translational Science Awards grant number 1UL1TR002373) and the Wisconsin Partnership Program. The project was cofunded by the University of Wisconsin Carbone Cancer Center (P30CA014520).

Supplementary Material

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