Differences in Patient and Parent Preferences for Prognostic Communication Across Disease Milestones in Advanced Childhood Cancer

Abstract

Background:

Navigating prognostic communication is challenging for clinicians caring for adolescents and young adults (AYAs) with poor-prognosis cancer. Presently, little is known about how AYA and parent preferences for prognostic disclosure evolve over time. This study explored communication preferences at key illness milestones of disease progression to inform individualized, person-centered approaches to optimize prognostic disclosure.

Procedure:

Sixty-five participants, including 25 AYAs aged 12–25 years and 40 parents, were recruited at distinct illness timepoints—diagnosis, relapse/progression, Phase I/II trial enrollment, and bereavement—to participate in semi-structured interviews about their preferences for timing, style, and content of prognostic communication. Rapid analysis was conducted to generate and compare themes across timepoints.

Results:

Preferences for early, ongoing, and repeated prognostic discussions were increasingly reported by AYAs and parents at advancing illness milestones, with bereaved parents particularly emphasizing the value of early disclosure in retrospect. Parents of living AYAs, though not bereaved parents, advised oncologists to consider excluding AYAs from prognostic conversations—a view rarely shared by AYAs themselves. AYAs and parents preferred oncologist-led communication and also advocated for the inclusion of multidisciplinary clinicians.

Conclusions:

These findings highlight the dynamic nature of prognostic communication preferences across the illness trajectory and key variances between AYA and parents’ preferences. Early and serial prognostic conversations are welcomed by many AYAs and parents, and multidisciplinary support may enhance communication satisfaction, particularly as preferences shift over time. Future research will investigate longitudinal interventions that recognize evolving communication preferences to personalize prognostic disclosure across pediatric cancer care.

1 |. Introduction

Over the past decade, research has underscored the importance of honest communication about cancer diagnosis, treatment, and prognosis with pediatric patients and families, challenging historical practices of shielding children from distressing information [1]. Adolescents and young adults (AYAs) with cancer who experience limited or unclear communication about their diagnosis and treatment report increased anxiety, depressive symptoms, feelings of distrust and isolation, and diminished empowerment, hindering their ability to make informed decisions or take an active role in their care [2–5]. Even when prognostic discussions cause initial distress, most AYAs express a preference for more information, not less [4]. Similarly, most parents of children with cancer value honest and transparent prognostic discussions, even when the prognosis is poor [6].

Yet growing evidence suggests that oncology clinicians often delay or defer the disclosure of prognostic information, in part due to concerns about causing distress, stealing hope, or harming therapeutic alliance [7, 8]. At times, parents may also avoid discussion about a poor prognosis in an effort to maintain positivity [9]. Given the variance in preferences for disclosure of prognosis, recent recommendations from AYAs and parents facing high-risk or refractory cancer underscore the importance of tailoring prognostic communication to individual preferences over time [10]. A multi-site study by Mastropolo et al., involving nearly 2000 AYAs with cancer who died, revealed that many AYA patients redirected their medical goals of care in the final weeks of life [11], emphasizing the need for ongoing prognostic conversations [12]. Achieving this personalized approach requires understanding how patient and parent preferences may differ across key illness milestones.

Prior studies have examined communication preferences over time, mainly focusing on older AYAs (mean age 22 years) with favorable prognoses in the months following diagnosis [13]. Less is known about how communication preferences shift for younger AYAs and parents of children with poor-prognosis cancer. To address this gap, we interviewed AYAs and parents of children navigating poor-prognosis cancer at pivotal illness timepoints to explore whether and how families may have different communication preferences at different milestones of illness progression.

2 |. Methods

The RIGHTime (Revealing Information Genuinely and Honestly across Time) study is a multi-phase, mixed-methods investigation of prognostic communication preferences and practices in advanced childhood cancer. This paper reports on findings from the first phase, which involved single-timepoint semi-structured interviews with AYA patients and parents of children of any age with poor-prognosis cancer recruited at specific illness timepoints. The study was approved by the Institutional Review Board at St. Jude Children’s Research Hospital. Study methods and findings adhere to the COnsolidated Criteria for REporting Qualitative Research (COREQ) checklist (Table S1) [14].

2.1 |. Eligibility, Recruitment, and Enrollment

Eligible AYA patients were 12–25 years old, diagnosed with cancer, and had an estimated ≤50% odds of overall survival determined by a pediatric oncologist. AYAs were recruited into one of three cohorts based on illness timepoints: (i) ≤3 months from a new diagnosis, (ii) ≤3 months from disease relapse or progression, and (iii) ≤3 months from enrollment in a Phase I/II clinical trial. Eligible parents were ≥18 years old, self-identified as primary caregivers of a child of any age with poor-prognosis cancer, and were recruited at the same three illness timepoints plus a fourth timepoint 6–24 months after the death of their child. Participants were identified through weekly reviews of patient rosters, trial protocol lists, and an institutional bereavement database. Purposeful sampling recruited participants of varying ages, genders, races, ethnicities, and disease types. Recruitment and enrollment occurred in-person or via telephone per participant preference.

2.2 |. Interview Guide Development and Data Collection

A multidisciplinary team of experts in pediatric oncology, palliative care, psychology, nursing, grief and bereavement, communication science, and qualitative research (Table S2) developed interview guides tailored for patients and parents at each timepoint. Literature review and the National Cancer Institute (NCI) core domains for patient–clinician communication [15] informed interview guide development. Guides were reviewed by multidisciplinary clinicians and a multi-institutional Qualitative Research Network, then by a group of bereaved parents who provided written feedback on the content, language, organization, and flow of the interview prompts and probes. This feedback was integrated into the final versions of the interview guides, which are presented in File S1. Question prompts and probes were standardized across participant groups, with minor modifications in language for patient guides. Research staff underwent extensive training to refine interviewing skills through iterative role-play and third-party feedback [10]. Interviews were conducted privately (H.F., S.M., E.K.) in the hospital, clinic, or via telephone, depending on participant preference. All interviews were audio-recorded, transcribed, and de-identified, with field notes reviewed by the research team. Participants received a $25 gift card as a token of appreciation for their engagement in the interview.

2.3 |. Data Analysis

A rapid qualitative analysis (RA) approach synthesized interview data to generate actionable findings efficiently. Notably, proponents of rapid analysis argue that this approach may reduce time and cost, elevate the voices and lived experience of more individuals, generate knowledge that better approximates the narratives of participants, and produce findings that are as valid as other forms of in-depth qualitative analysis to inform next steps more efficiently [16–18]. This targeted analysis focused on interview prompts and probes related to the NCI communication domain of “exchanging information,” to characterize thematic patterns in AYA and parent preferences regarding when, how, and what prognostic information should be shared across advancing illness.

Using a structured, multi-phase approach, independent analysts (H.F., S.M., E.K.) created a template to summarize interview content. Analysts reviewed transcripts, identified key concepts, and met with the research team to compare findings. After reviewing three transcripts per cohort (i.e., participant subgroup at each study timepoint), concept concordance exceeded 90%. Analysts then independently summarized all transcripts, discussing findings regularly with the research team. Thematic saturation was reached within five transcripts per cohort, with no new concepts emerging in the final two transcripts.

To facilitate cross-cohort comparisons, concepts were organized in summary matrices aligned with the “when, how, and what” categories of information exchange. Analysts examined patterns within each category to generate themes, which were compared across AYA and parent cohorts, with review by the research team. The frequency of a given theme endorsed by participants, stratified by AYA/parent and timepoint, was presented with the following demarcations: none (0%), few (1%–19%), some (20%–39%), around half (40%–59%), most (60%–79%), almost all (80%–99%), and all (100%). Demographic characteristics were analyzed descriptively to contextualize findings.

3 |. Results

Sixty-five interviews were conducted with AYA patients (n = 25) and parents (n = 40) across the illness trajectory, with 10–15 participants interviewed at each timepoint (i.e., diagnosis, relapse/progression, Phase I/II trial enrollment, bereavement). Demographic and cohort-specific data for participants are presented in Table 1. Participants were predominantly female (66%) and White (65%), with 34% identifying as Black/Biracial and 12% as Latino/Hispanic. Demographic composition of participants across cohorts remained largely consistent, with only minor variations in gender distribution (specifically for parents), race, ethnicity, and diagnosis. Interview durations ranged from 19 to 38 minutes for AYAs (median 25 minutes) and 19–140 minutes for parents (median 53 minutes). Results are presented based on AYA’s and parents’ preferences for the timing, style, and content of prognostic communication.

TABLE 1.

Participant demographics

	n (%)	Cohort 1	Cohort 2	Cohort 3	Cohort 4
		≤3 months diagnosis	≤3 months disease progression	≤3 months Phase I/II trial	6–24 months after death
Parents (n = 40)
Gender
Male	8 (20)	0 (0)	3 (30)	4 (40)	1 (10)
Female	32 (80)	10 (100)	7 (70)	6 (60)	9 (90)
Race
African American/Black	14 (35)	4 (40)	2 (20)	4 (40)	4 (40)
Asian	1 (2.5)	0 (0)	1 (10)	0 (0)	0 (0)
Biracial	1 (2.5)	0 (0)	1 (10)	0 (0)	0 (0)
White	24 (60)	6 (60)	6 (60)	6 (60)	6 (60)
Ethnicity
Hispanic/Latino	5 (13)	0 (0)	0 (0)	2 (20)	3 (30)
Non-Hispanic	35 (87)	10 (100)	10 (100)	8 (80)	7 (70)
Patients (n =25)
Gender
Male	14 (56)	2 (40)	5 (50)	7 (70)
Female	11 (44)	3 (60)	5 (50)	3 (30)
Race
African American/Black	6 (24)	1 (20)	2 (20)	3 (30)
Asian	0 (0)	0 (0)	0 (0)	0 (0)
Biracial	1 (4)	0 (0)	1 (10)	0 (0)
White	18 (72)	4 (80)	7 (70)	7 (70)
Ethnicity
Hispanic/Latino	3 (12)	0 (0)	2 (20)	1 (10)
Non-Hispanic	22 (88)	5 (100)	8 (80)	9 (90)
Patient age at interview
12–14 years	13 (52)	3 (60)	5 (50)	5 (50)
15–17 years	7 (28)	1 (20)	4 (40)	2 (20)
18–20 years	3 (12)	1 (20)	1 (10)	1 (10)
21–25 years	2 (8)	0 (0)	0 (0)	2 (20)
Diagnosis
Leukemia/Lymphoma	9 (36)	0 (0)	6 (60)	3 (30)
CNS tumor	2 (8)	0 (0)	1 (10)	1 (10)
Solid tumor	14 (56)	5 (100)	3 (30)	6 (60)

Note: Of the 96 patients and parents approached, 22 declined to participate (23%), and 9 were lost to follow-up prior to the interview (9%) due to challenging illness circumstances or the patient dying before the interview could be scheduled. No patterns of exclusion for minoritized or underrepresented groups were identified. Specifically, of those who declined to participate, 23% were Black (compared to 35% of those who opted to participate) and 13% were Hispanic (compared to 12% of those who opted to participate).

Abbreviation: CNS, central nervous system.

3.1 |. Timing of Prognostic Communication

Four key themes emerged regarding when prognostic communication should occur: (i) as early as diagnosis, (ii) as soon as information is available, (iii) with any change in disease status, and (iv) repeatedly over time. A variety of quotes illustrating these themes from AYAs and parents at different timepoints in the illness course are presented in Table S3.

Despite similarities in themes across cohorts, several patterns were noted in thematic prevalence at different timepoints. Within 3 months from diagnosis, relapse/progression, and Phase I/II trial enrollment, around half of AYAs and parents stressed the importance of early prognostic communication, as soon as the time of diagnosis. The value of early prognostic disclosure was described even more frequently by parents after the death of a child, with most emphasizing its importance during bereavement.

Additionally, most AYAs at diagnosis wanted prognostic communication to occur as soon as any information became available. This theme appeared progressively less for AYAs across advancing illness, with around half endorsing this approach at disease progression and some endorsing it at Phase I/II trial enrollment. Parental preferences for immediate, real-time disclosure of information remained relatively stable across the first three timepoints, but this preference noticeably increased in conversations with bereaved parents, with most endorsing this approach upon reflection after the death of a child.

Both AYAs and parents described a preference for prognostic communication with any change in disease status, with an overall trajectory of increasing emphasis on this theme across timepoints. Around half of AYAs and parents endorsed this preference at diagnosis, yet almost all participants endorsed this approach at the timepoint of Phase I/II trial enrollment (AYAs) or during bereavement (parents). Across cohorts, almost all participants advocated for multiple prognostic discussions over time, expressing the benefits of repetition.

3.2 |. Style of Prognostic Communication

Four themes emerged across AYA and parent cohorts regarding preferences for (i) inclusion of the AYAs, (ii) oncologist leadership in disclosure, (iii) integration of psychosocial support staff, and (iv) location of discussions. These themes and supporting quotes stratified by participants and timepoints are presented in Table S4.

Several notable patterns in thematic prevalence emerged across both participant and timepoint cohorts related to communication practices. Across all timepoints, some parents advocated for not including the AYAs in conversations about prognosis, no matter what. Parents wanted the oncologist to at least consider not including the AYAs with increasing frequency across timepoints, from some parents at the time of diagnosis to almost all parents at Phase I/II trial enrollment. Notably, no bereaved parents mentioned a preference for the oncologist to consider excluding the AYAs. On the other hand, AYAs rarely discussed not being included in prognostic discussions. AYAs increasingly emphasized the importance of their inclusion across timepoints, from some AYAs at diagnosis to around half of AYAs at Phase I/II trial enrollment. Conversely, parents discussed including the AYA progressively less across advancing disease, from around half of parents at diagnosis to only a few parents at Phase I/II trial enrollment. At the bereavement timepoint, however, no parents advocated for the oncologist to consider excluding AYAs, and around half of the parents underlined the value of always including the AYAs.

Another prevalent theme involved who should lead and participate in prognostic disclosure discussions. Most AYAs and parents wanted the primary oncologist to lead, with no appreciable change in thematic frequency across timepoints. Most parents at the time of diagnosis expressed a desire for other psychosocial clinicians (e.g., psychosocial support staff, spiritual care) to join the conversation; this preference decreased over subsequent timepoints until bereavement, at which point most parents again advocated for this additional support. AYA endorsement for additional psychosocial support remained steady over time, with some AYAs endorsing this preference at each timepoint. At diagnosis and Phase I/II trial enrollment, some AYAs recommended limiting the number of people in the room, while around half of AYAs endorsed this approach at timepoints of disease progression. Conversely, most parents advocated for limiting people in the room across all timepoints.

Some AYAs emphasized the value of emotional/spiritual support from psychology, child life, social work, palliative care, and/or spiritual care to help navigate prognostic communication across timepoints. Comparatively, around half of parents described this type of support as important at the time of diagnosis and disease progression, but it was rarely discussed at the time of enrollment on a Phase I/II trial. Notably, most bereaved parents emphasized the need for psychosocial support during conversations about prognosis.

There was no difference for AYAs or parents across timepoints for the preferred location of prognostic communication. Some AYAs and parents felt that location was unimportant at each timepoint. Similarly, some AYAs and parents wanted the oncologist to share prognostic information by phone to optimize the convenience of information exchange. Almost all AYAs and parents advocated for prognostic communication to occur in-person across all timepoints.

3.3 |. Content of Prognostic Information

Four themes were generated across AYA and parent cohorts regarding preferences for (i) hearing everything versus limiting information, (ii) individualized content, (iii) importance of anticipatory guidance, and (iv) value of statistics and/or population-level data. Quotes illustrating these themes for participants across timepoints are presented in Table S5.

Parents more than AYAs emphasized wanting to know “everything.” Around half of parents highlighted this preference across timepoints, without notable changes in thematic frequency. Some AYAs advocated for hearing “everything” at diagnosis, and no AYAs wanted to hear “everything” at disease relapse/progression; however, around half of AYAs did want to hear “everything” around the timepoint of Phase I/II trial enrollment. Limiting certain information emerged as a theme in both participant cohorts, with decreasing thematic frequency across timepoints. Specifically, around half of parents at diagnosis wanted the oncologist to censor some prognostic information—primarily limiting the information shared with AYAs but not withholding it from parents themselves—but only a few parents felt this way at the timepoint of disease progression, and no parents endorsed this approach during bereavement. Similarly, around half of AYAs thought it was appropriate to limit prognostic information at diagnosis, some AYAs approved of limiting information at the timepoint of relapse/progression, and a few AYAs endorsed this approach at Phase I/II trial enrollment.

A few AYAs and parents at each timepoint verbalized that oncologists should allow AYAs and parents to guide what prognostic information was shared; however, emphasis on this theme increased noticeably at the timepoint of bereavement, when around half of the parents emphasized this preference. Most AYAs and parents underscored the need for anticipatory guidance (i.e., proactive preparation for anticipated disease progression) as a key component of prognostic communication, with emphasis steadily increasing over timepoints for parents and decreased for AYAs, but overall, most participants supported this theme.

Overall, most participants did not feel strongly about whether the oncologist did or did not use disease statistics. Some AYAs wanted limited or no numbers, while slightly more AYAs had a preference for numbers, and there were no appreciable patterns across timepoints. Conversely, parents increasingly advocated for limiting numbers across timepoints, with a minority raising this point at diagnosis and then around half endorsing limited numbers at later timepoints. Reinforcing this finding, most parents talked about wanting numbers at earlier timepoints, whereas some parents wanted numbers by the timepoint of Phase I/II trial enrollment. Most AYAs and around half of parents described the value of the oncologist using population-level data (e.g., “out of 100 patients, this treatment may cure 15”) at the time of diagnosis, but this preference was mentioned less often across timepoints by both groups.

4 |. Discussion

These findings build upon prior research exploring AYAs’ and parents’ preferences for prognostic communication, illuminating how preferences may differ across the illness trajectory. Our results underscore the nuanced and dynamic nature of communication needs, offering actionable insights for pediatric oncology clinicians navigating these difficult conversations. This discussion focuses on six key insights for cancer care professionals to consider when discussing prognosis.

Insight 1. Advancing illness timepoints may influence preferences for prognostic communication.

In this study, AYAs and parents in the progressive illness course placed different degrees of emphasis on themes describing when, how, and what to communicate about prognosis. While the specific changes in prognostic disclosure preferences described may not be generalizable, the appearance of trends across illness timepoints suggests that prognostic communication preferences are not static. This finding builds upon recent evidence showing the evolution of goals of care across illness for AYAs with cancer [11], underscoring the dynamic nature of AYA needs, preferences, and openness to difficult conversations. We advocate for cancer care professionals, in particular oncologists, to consider the possibility that a patient or parent may want to receive prognostic communication in different ways from one conversation to the next.

Insight 2. Tailoring prognostic communication to evolving preferences requires open, bidirectional conversations about individualized needs.

Interviews with pediatric oncologists recently showed that clinicians recognize the importance of personalized prognostic disclosure, and they typically tailor information based on inferences about what a given patient or parent wants, needs, or is ready to hear [10]. However, given the variability in preferences across individuals, further compounded by the variability in preferences across disease milestones, we advocate for cancer care professionals to engage in transparent, ongoing conversations with AYAs and families about their preferences for prognostic communication. Recent data reveal that AYA patients with cancer and parents of children with cancer welcome conversations about their communication preferences [19], and the task of determining preferences need not fall exclusively on oncologists. Psychosocial clinicians are specially trained and experienced in initiating sensitive conversations, exploring how patients and families wish to receive information, and communicating these preferences across the multidisciplinary care team. When possible, we discourage clinicians from asking patients and parents what information they want to know immediately before sharing bad news; rather, we advise having this conversation early and revisiting it periodically to normalize dialog about communication preferences, with the goal of honoring individual needs and values. However, we recognize that early conversations are not always possible in acute or time-constrained scenarios. In such cases, even a brief question (e.g., “Would you like me to explain everything I know at this point, or would you prefer a more general overview first?”) can help clinicians acknowledge and honor individual preferences, even when time is limited. Additional strategies for eliciting prognostic communication preferences, including specific examples for clinicians, have been outlined in previous publications [15].

Insight 3. The value added by repetitive disclosure of a poor prognosis deserves consideration across progressive illness timepoints.

Recent data from AYA patients and parents facing poor-prognosis cancer suggest that many believe high-quality prognostic disclosure should occur more than once, with some wanting prognostic communication at every encounter in which new information becomes available [10]. Yet iterative repetition of a grim prognosis in the absence of new information may also be perceived as harmful [20], requiring clinicians to strike a balance with transparent prognostication that does not belabor the point. These findings suggest that patients and parents de-emphasize the value of repetitive prognostic communication at timepoints of disease relapse/progression and Phase I/II trial enrollment. At the same time, clinicians should remain mindful that preferences for repetition can vary, and some individuals may find value in revisiting prognostic information even when no new updates are available. We advocate for cancer care professionals to consider if/how often a patient or parent has been told directly about low odds of survival and avoid duplicative prognostic disclosure in the absence of new information. Multidisciplinary team and/or family meetings, as well as routine open communication between team members throughout the treatment course, can help to avoid such redundancy.

Insight 4. Phase I/II trial enrollment may represent a uniquely sensitive juncture accompanied by shifts in communication preferences.

Several patterns indicative of distinct prognostic communication preferences were observed around the timepoint of Phase I/II trial enrollment. Various factors may contribute to this phenomenon, including cognitive dissonance (e.g., enduring study-related symptom burden in hopes of being cured while participating in a trial not designed to be curative) or cumulative insights gained from prior conversations about prognosis. More research is needed to explore whether, why, and how this timepoint may be a signpost for evolving communication preferences. Presently, we encourage clinicians to consider the possibility that patients and parents who enroll in Phase I/II trials may experience changes in how they want to discuss prognosis and revisit conversations with families about their communication needs.

Insight 5: AYAs and parents consistently prefer prognostic communication from their primary oncologist and seek psychosocial support across the illness trajectory.

Although AYAs and parents generally wanted their oncologist to lead conversations about prognosis at each stage in the illness course, parents and AYAs at each timepoint endorsed a preference for a multidisciplinary approach. This openness to psychosocial support in prognostic disclosure underscores the need for oncologists to engage psychologists, social workers, child life specialists, chaplains, and palliative care clinicians in prognosis discussions, update them on family conversations, and collaborate to support families during disease progression. These findings affirm best-practice guidelines emphasizing early and ongoing integration of psychosocial [21] and palliative care [22] support. Families may not know how to access psychosocial resources [23], underscoring the importance of oncologists introducing supportive care options proactively, particularly at sensitive junctures such as Phase I/II trial enrollment [24]. Ensuring the involvement of trusted psychosocial clinicians in prognostic communication may further enhance family coping [25] and also avoid duplicated conversations between families and multiple providers.

Insight 6: Parents don’t know what they don’t know, until they know it.

Parents in this study echoed prior findings that families “don’t know what they don’t know,” often realizing only in hindsight that they needed more guidance about which prognostic questions to ask [26]. Bereaved parents, in particular, urged earlier and repeated disclosure and greater inclusion of adolescents—patterns that may signal decisional regret among those who once avoided such conversations. Consistent with research showing that parents who receive detailed prognostic information experience less regret [27] and that bereaved parents are far more likely to regret conversations they never had than those they did [28]. These results suggest that transparent, honest dialog is rarely regretted, even when distressing. To translate these retrospective lessons into real-time practice, oncologists might partner with trained parent mentors [29] or share their experiences with prior families, always after gauging readiness and inviting families to decide whether such input would be helpful [30]. For example, clinicians might ask, “Some parents find it helpful to hear about other families who have faced similar situations. Would it be useful if I shared what we’ve learned from other parents’ experiences with talking about prognosis?”

This study has several limitations. While we used purposeful sampling to recruit a diverse cohort of AYAs and parents from an academic cancer center, along with oncologists from multiple institutions, the perspectives captured here may not fully represent the broader pediatric cancer community. Additionally, those who chose to participate may have distinct communication preferences compared to individuals who declined enrollment. Although we aimed to reflect regional demographics by including participants of color proportionally, the majority of our sample was female and White, which could shape the findings. Additionally, as caregiving structures vary across cultures/communities, including non-parent caregivers, future research may yield a broader understanding of family communication in pediatric cancer. The exclusion of non-English-speaking participants limits our understanding of prognostic communication preferences across linguistic groups; future studies will integrate families who speak languages other than English and explore the complexities of using medical interpreters to navigate prognostic disclosure. In this initial phase, findings were not participant-validated; however, patients, parents, and oncologists will have the opportunity to review and interpret results as part of the subsequent intervention co-design process. During interviews, participants were not instructed to anchor their preferences to a specific milestone; rather, patients and parents shared their existing perspectives and recommendations about best practices for prognostic disclosure. Participants’ recall of prior experiences and/or preferences could have influenced their present-day perceptions in unknown ways. Lastly, this analysis specifically examined themes related to patient, parent, and oncologist perspectives on eliciting prognostic communication preferences. Ongoing investigations stratified by illness trajectory will further explore how these preferences evolve over time, offering insights into tailoring prognostic disclosure to align with individualized needs across the course of illness.

In summary, this study examined potential differences in prognostic communication preferences endorsed by AYAs and parents at various timepoints in the progressive cancer course. Understanding how these preferences may shift across the illness trajectory has important implications for clinical practice and communication skills training (CST) programs. Existing CST curricula often approach edification around “difficult communication” as a singular, static skill set [31]. Our findings suggest, however, that communication approaches for prognostic disclosure should be tailored to the evolving needs of patients and families at different stages of illness. At the bedside, multidisciplinary cancer care professionals should consider engaging in ongoing conversations with AYAs and parents to elicit their prognostic communication preferences with the goal of individualizing discussions about prognosis at critical timepoints in the advancing illness course. Further research will evaluate the feasibility, acceptability, and impact of adapting prognostic communication approaches to align with individual preferences. Personalizing these strategies has the potential to enhance communication satisfaction, improve psychosocial outcomes, and mitigate the emotional burden faced by families navigating advanced pediatric cancer.

Supplementary Material

Additional supporting information can be found online in the Supporting Information section.

Table S1: COREQ (COnsolidated criteria for REporting Qualitative research) Checklist. Table S2: Author Attributes and Qualifications. Table S3: Timing of prognostic communication. Table S4: Style of prognostic communication. TABLE S5: Content of prognostic information. Supporting File: pbc31964-sup-0002-SuppMat-File-Review.pdf

Abbreviations:

AYA

adolescent and young adult

CST

communication skills training

NCI

National Cancer Institute

RA

rapid qualitative analysis