A total of 32 in-depth interviews were conducted with a diverse population of English and Spanish speaking participants, including 28 parents and 5 patients (27 parent-only interviews, 4 patient-only interviews, 1 joint parent and patient interview). Characteristics of the study population are summarized in Table 1. Three primary domains emerged from the narratives: structural factors, variability in leukemia presentation, and quality of interpersonal interactions. Within these domains, repeated key themes were identified to further categorize barriers and facilitators encountered by study participants along their diagnostic pathway. Themes within each domain with illustrative quotations are summarized in Table 2.

Table 2 Themes and illustrative quote(s)

Structural factors

Insurance disincentives

A number of parents described insurance disincentives to seeking immediate medical attention for their child’s initial symptoms. Some cited high-deductible costs as deterrents to actually utilizing covered benefits in a more timely manner, opting to wait and see if symptoms resolved before bringing their child to the doctor. They additionally reported financial concerns that influenced the type of care that was ultimately sought, comparing the disparate costs of co-pays for urgent care and emergency visits despite both being included in insurance coverage. As one parent explained: “Urgent Care I believe is $25 or $50 through our insurance. ER is $500 … It dissuades people. And it sounds so ridiculous because it’s your life.” [middle income, Hispanic White parent].

In comparison, other parents who had insurance with manageable deductibles described the potential financial burden associated with the care received during both the pre-diagnostic workup and treatment period: “If we didn’t get the HMO – we’ve got a stack of EOBs [Explanation of Benefits] here that’s $358,000 … his care maxes out at $4,000. I can’t imagine being a family in a position where you’re staring at those kind of obstacles.” [high income, non-Hispanic White parent].

Difficulty getting a timely appointment

A diagnostic barrier raised by multiple study participants was difficulty getting an appointment with their primary care provider, largely attributed to lack of immediate openings in clinic schedules. “We were managing our son’s care that week by the doctor’s hours because I was trying to see his primary and she just wasn’t working that week.” [high income, non-Hispanic White parent].

In some cases, scheduling difficulties with the primary care provider led to visits with other providers in multi-provider practices or separate settings. Seeing different providers due to scheduling difficulties disrupted the continuity of care that otherwise helps build trusting relationships between patients and providers. As one parent described: “There was no doctor at the university and they sent me to another doctor at another place … He did not care for my son.” [low income, Hispanic White parent].

Some parents opted to wait for an open appointment with their primary care provider. Others opted for urgent care visits instead, which often felt counterproductive as patients were often advised to schedule follow-up with a primary care provider afterward.

Initial site of first encounter

Difficulty obtaining a timely appointment and differences in the burden of insurance cost-sharing between different sites influenced the site of the initial medical encounter. “I couldn’t get him in with the pediatrician – just go ahead and take him to the urgent care.” [low income, non-Hispanic White parent].

It is important to note that initial sites of medical encounters were not limited to primary care, urgent care, and emergency care settings. Other initial encounters associated with a possible cancer symptom included the dental office, school nurse, and other pediatric and medical specialists. One patient, without an established primary care doctor, presented first to her gynecologist, who detected anemia on initial bloodwork and subsequently referred her to a hospital: “I didn’t go to the doctor’s before, so I haven’t even been in to see a primary ever since I was diagnosed with this.” [low income, Hispanic White patient].

Based on chart reviews, no relationship between the location of first encounter (primary care clinic vs urgent care vs emergency department vs specialty clinic) and the total number of medical encounters prior to diagnosis was noted. However, in the emergency department setting patients more often had blood work done compared to primary care settings (63% vs 28%, respectively, as shown in Supplemental Table 2). Multiple patients with suspected leukemia due to concerning laboratory results at a local hospital were then transferred to the tertiary care center due to lack of expertise in the evaluation and treatment of pediatric leukemia; transfers were generally perceived to be timely and well-coordinated by study participants.

Navigating the healthcare system

Families for whom the leukemia diagnosis was their first encounter with the healthcare system for a serious illness in retrospect described feeling unable to advocate for their child during the initial diagnostic workup: “I felt like I could have spoke out more. That I should have told them to draw blood earlier… I wasn’t thinking to be like, oh, can you all draw blood and do this, do this, and a third?” [low income, non-Hispanic Black parent].

The complex medical concepts involved in a leukemia workup further complicated healthcare navigation for those with limited health literacy and language barriers: “My husband went with him, but my husband didn’t understand anything they said. My husband had understood that they had told me that the x-ray came back bad, so I went the following day.” [income unreported, other Hispanic, Spanish speaking parent].

On the other hand, parents with previous experiences with healthcare felt better positioned to navigate the medical system during their child’s diagnostic workup. Those with previous or existing medical conditions described how their personal experiences helped them recognize red flag symptoms, such as petechiae, in their child. Of note, being personally employed in the healthcare setting was reported to facilitate earlier diagnostic bloodwork, though this only applied to a small subset of participants.

Variability in leukemia presentation

The timing of symptom onset was widely variable between participants, ranging from days to weeks. The reported symptoms of initial presentation were also variable and non-specific, including rash, fever, pallor, bruising, loss of appetite, fatigue, and pain. They were often reasonably attributed to more common, benign processes by both physicians and parents. For instance, multiple participants reported receiving a diagnosis of viral upper respiratory infection, particularly in winter months. Growing pains were another commonly reported attribution for children presenting with extremity pain: “They just said that he was having growing pains because he was getting taller…and they kept saying the same thing.” [low income, non-Hispanic Black parent].

Parents shared that it was often a significant change in their child’s behavior or affect that prompted them to seek medical attention, although this also presented variably and vaguely in the form of appetite changes, increased naps/sleep, and abruptly needing to be carried by parent.

Quality of interpersonal interactions

Parental intuition, tensions around management decisions and testing

Tensions in parent-provider interactions were reported when parental intuition conflicted with the provider’s approach. Multiple parents expressed that their intuition alerted them to the serious nature of their child’s symptoms. They expressed frustration when medical teams did not pursue further workup for unresolved or persistent symptoms. Many respondents felt dismissed when bringing their child in for repeated visits for the same chief complaint whether they were seen by the same provider or different providers in shared group practices: “They kept saying he has strep throat … they were giving him antibiotics for strep throat, but the fevers would not subside. And he still had the strep throat every time.” [low income, non-Hispanic Black parent].

Seeking additional care, trust in provider

Seeking other additional medical care was commonly reported by parents when their impressions conflicted with management decisions made by initial providers. “He wanted to see us back in the office the next day, but … I just felt like there was just something wrong. And so instead of waiting to see him the next day, we went into the emergency room.” [low income, other Hispanic parent]. A breakdown in trust between parents and providers was more often described in cases involving frustration in having repeat visits for the same complaint. In some cases, this broken confidence led to changing primary care providers in the long term. “He’s not her pediatrician. I think just not having that trust in him anymore in that if I tell you what’s going on with her are you going to believe me, are you going to look into it more … just not sure if he’ll take things serious, that was very uneasy for me.” [low income, Hispanic White parent].

In contrast, the continuity established through previous long-standing interactions contributed to a trusting relationship between providers and parents. Parents who felt involved in the decision-making process were more likely to report trust in their provider. In a few cases, parents reported feeling encouraged by their primary care provider to obtain additional input. “My experiences have been really positive. He is a really good doctor. He’s a doctor of the family. And he really help[ed] us with this process. … He said that maybe [patient] would need to be provided care at a different place. But he said that we needed to insist. So he made calls … and they told us okay. We’re going to see him.” [low income, Hispanic White parent].

For some families whose primary language is not English, a combination of language discordance and health literacy barriers contributed to miscommunications about diagnostic plans: “They told us that supposedly, they were going to perform a biopsy. The attending doctor did nothing. And supposedly given that my children can speak English and I cannot, what the doctor told them basically is that Dr. [Last Name] should instead focus on him being overweight and with the cholesterol issues.” [low income, Hispanic White, Spanish speaking parent].

In contrast, language concordance and the use of interpreters contributed to positive care experiences with improved transparency and trust in the patient-provider relationship. When asked what made the family trust the medical team, they responded: “Well, because they received us very pleasantly. And most of them spoke Spanish even though they were not our race.” [income unreported, other Hispanic, Spanish speaking parent].

Dismissal and judgment by providers

A range of experiences involving feeling judged by providers were also reported to contribute to interpersonal tensions and a breakdown in trust between parents and providers. General sentiments of feeling dismissed or belittled by their providers were described more often by parents of low SES or minority race/ethnicity. “I ended up getting pregnant again and he goes ‘again?’ … It made me feel like he got into my personal life and he shouldn’t have … instead of just being my doctor.” [low income, Hispanic Black patient].

First time mothers, especially, reported feeling their concerns were dismissed by providers who attributed their worries to being a new parent. As one parent describes: “I felt like I got pushed aside or kind of told, ‘it’s okay, don’t worry, she’s fine, everything’s okay… it happens, new babies – just get used to it, you’re a new mom, you’ve got to get used to your baby’.” [low income, other Hispanic parent].

Such actions which appear to be rooted in implicit bias contributed to both delays in diagnostic workup and interpersonal tensions that led to a breakdown in trust between the parent/patient and provider.

Family relationships and home environment

Two parent households and parents who had extended family nearby, identified childcare help as a factor that allowed them to find time to bring their sick child in for medical visits. This was especially important for households with multiple children and for cases where the household was distant from medical care. Additionally, involvement of grandparents or extended family members in the regular care of the child was described as a facilitator as it provided secondary observers to recognize changes that parents had otherwise not noticed: “My mom – she really saw it better than I … she actually had the boys a few days … she knew just playing with him that he was not okay. So she’s really the one that saw it all and was like, please, can I take him in.” [low income, non-Hispanic White parent].

Having family members in healthcare, for parents who themselves had limited prior experiences with healthcare, was reported as a facilitator along the diagnostic pathway: “The spots that he had on his chest – after that – I have a brother that’s a doctor. I sent him pictures over there in Peru … he’s like, you have to take him to the doctor because that is dangerous … and I was like, what is leukemia?” [low income, Hispanic White, Spanish speaking parent].

Pre-diagnosis medical encounters

Details of the pre-diagnostic course were generally consistent between documentation in the electronic health record (EHR) and interview respondents’ descriptions. As in the interviews, the most commonly reported presenting symptoms at the first medical encounter were documented in the EHR as fever, pain, and fatigue. Initial management typically involved symptom relief with acetaminophen or ibuprofen. While patients’ behavioral changes (such as appetite loss or increased clinginess) were more pronounced in respondent interview descriptions of symptom presentation, the medical documentation focused more on objective signs and reported physical findings. Additionally, multiple interview respondents recounted increases in severity of pain symptoms as time went on; however this progression of pain was less frequently documented in the EHR.

Medical documentation provided insight into providers’ clinical decision-making. There was good concordance between the diagnostic workup described in interviews and documented diagnostic testing or imaging. It is important to note that symptoms perceived by parents to be concerning were not necessarily judged by physicians to be red flag symptoms requiring additional diagnostic laboratory workup. As described by both study participants and in the EHR, blood tests were more often performed [1] in subsequent medical encounters than in the first medical encounter (53% vs 31%) and [2] in medical encounters involving urgent care or the emergency department than at primary care sites (Supplemental Table 2).

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