Abstract
While much is known about the initial communication of a definitive pediatric cancer diagnosis by the child’s pediatric oncologist, little is known about the discussions leading up to this formal conversation, which are often had with nononcologists. We sought to describe these initial conversations regarding the possibility of a child’s oncologic diagnosis, from the perspective of both the patient/family as well as the provider. Semistructured interviews were performed with individuals involved with a child with recently diagnosed cancer at a quaternary care institution in an urban, mid-Atlantic city. Interviews were recorded, transcribed, and analyzed using qualitative thematic analysis. In total, 71 people were interviewed, representing the experiences of 29 unique pediatric patients. Patient and caregiver themes included recognition of the urgency of the situation and variety of terms used to indicate the potential of cancer. Physician themes included the impact of health literacy on the discussion and varying opinions on how direct to be regarding the possibility of a cancer diagnosis. The initial discussions of the possibility of a pediatric cancer diagnosis often occur with nononcologists, and this day zero talk is critical in laying the groundwork for future communication with providers.
Keywords: Communication, Diagnosis, Childhood cancer, Qualitative, Health literacy, Patient, physician communication
Introduction
Parents who have been given life changing news about their child often clearly remember the good and bad aspects of the experience for years afterwards [1]. A study of parents of children diagnosed with cancer found that one of the topics most often spontaneously discussed by parents was their experience and communication with health care professionals throughout the course of their child’s illness and treatment, noting that “the time of diagnosis appeared to be a crucial point for setting the stage in the ongoing interaction between parents, child, doctor, and other health care providers over the duration of the usually lengthy treatment” [2].
Many studies have focused on the “day one talk” between a family and oncology team, a formal discussion of the diagnosis, prognosis, and specifics of treatment [1, 3, 4]. The experience of the “day one talk” is known to either negatively or positively affect the patient and family’s adjustment to the diagnosis and their relationship with the physician going forward [2, 5, 6]. Furthermore, many studies note the ability of the emotional effects parents experience surrounding a diagnosis (e.g. stress, fear, uncertainty) to impact patient outcomes with treatment [1, 7]. Studies that focus on this initial diagnosis process have also identified broad communication challenges confronted by families and patients leading up to diagnosis and during treatment, notably confusion, receiving the “right” amount of information, and effects of receiving certain types of information [2, 8].
However, studies have found that many parents are first told of their child’s diagnosis prior to seeing an oncologist, by either a family doctor, pediatrician, ED physician, or another specialist [2]. Whether a diagnosis was made in a relatively straightforward manner or through a process involving multiple specialists, the discussion of the probability of cancer often takes place prior to the family’s formal discussion with the oncology team.
Little is known about what specifically is communicated during early conversations, what we term as “day zero talk”, regarding initial pediatric cancer diagnoses, prompting further exploration into the patient and parent experience leading up to diagnosis. Our study sought to explore these early patient and parent experiences and how the diagnosis is communicated in its early stages by physicians other than oncologists. Given the knowledge from previous studies that this is a crucial moment for families of children with cancer and that confusion [2] and communication challenges surrounding cancer diagnosis are common [2, 9], this study sought to identify how to best communicate the potential for an oncologic diagnosis to patients and their families.
Methods
Study Sample and Recruitment
This was a qualitative research study consisting of semistructured interviews. It was approved by the Internal Review Board of Johns Hopkins University School of Medicine (IRB CIR00041909). Recently diagnosed pediatric or young adult patients were identified from a single large academic treatment center located in an urban, mid-Atlantic city. For this study, “recently” was defined as any patient diagnosed within 1–3 months of the interview, with the rationale that this timeframe gave families time to adjust to a new diagnosis while being close enough to the original experience to minimize recall errors. All families were English speaking. Patients’ caregivers were invited to participate in semistructured interviews regarding their experience leading up to diagnosis and their perspective on early discussions with physicians prior to being introduced to the oncology team. Patients over 13 were interviewed in addition to interviewing their caregiver(s). Eligible families, caregivers, and/or patients were approached in both outpatient and inpatient settings of the pediatric oncology unit of the hospital.
Following caregiver or patient interviews, primary pediatricians or other physicians seen in the month prior to transfer to the oncology team were contacted. These physicians were asked to participate in a semistructured interview or to answer questions via email regarding their experience with the families in the study, as well as their broader experiences delivering oncologic diagnoses. These physicians represented multiple medical facilities across several states.
Interviews
Semistructured interview guides were created for patient/caregiver and physician discussions to capture experiences of the delivery of bad news and experiences of new diagnoses of pediatric cancers. Guides (Appendix 1) were created based on literature review and pilot interviews from a small set of families and physicians. The guides were used as the foundation for interviews; however, flexibility existed for questioning to expand on interviewee responses to initial questions as necessary. Patient/caregiver interviews lasted an average of 21 min (interquartile range of 15 min), while physician interviews lasted an average of 14 min (interquartile range of 10 min). Interviews were conducted until data saturation was reached.
Qualitative Analysis
Interviews were recorded and transcribed using a professional transcription service and reviewed for accuracy by research members. Patient/caregiver and physician responses were analyzed using a qualitative thematic approach, where meanings within the data were assembled into organized themes or categories [10]. These themes or categories were used to create a collection of the codes and their descriptions and were compiled into codebooks, the use of which allows for the ability to manage comparisons across each interest group [10]. Transcripts were analyzed and coded independently by two readers, and codes were modified to reflect emerging themes prior to a combined review for consensus. The codebooks were updated to reflect these modifications and solidified at the point of research member consensus. This iterative process increased understanding of the phenomena while increasing analytical rigor [11]. This method of analysis was employed on all codebooks for individual interest groups (patient/caregiver and diagnosing physician). Analysis of transcripts generated several major themes and subthemes; taken from the perspective of each interest group, the data are clustered around the major theme of communication.
Results
We identified 29 unique patients and interviewed 71 individuals (11 patients, 34 caregivers, and 26 physicians) about the diagnostic process of these 29 patients. Patient ages ranged from 2 weeks to 24 years old, with a median of 8. A wide range of diagnoses was included, with hematologic as well as solid malignancies (Table 1).
Table 1.
Range of patient diagnoses
| Age when diagnosed | # Patients | Types of cancer/details | # Patients |
|---|---|---|---|
| Neonate (< 4 weeks) | 1 | Blood cancer: B-ALL, T-ALL, AML, APML | 10 |
| Infant (1 month to < 1 year) | 3 | Bone tumor: Osteosarcoma, Ewing sarcoma, chordoma, Langerhans cell histiocytosis of the spine | 7 |
| Toddler (1 to < 3 years) | 5 | Brain/head tumor: Glioblastoma multiforme, low grade glioma, retinoblastoma | 4 |
| Preschool (3 to < 6 years) | 4 | Abdominal-pelvic tumor: Rhabdoid tumor, colon adenocarcinoma, ovarian choriocarcinoma, bladder rhabdomyosarcoma, hepatoblastoma | 5 |
| School age (6 to < 13 years) | 3 | Neuroblastoma | 2 |
| Adolescent (13 to < 18 years) | 5 | ||
| Young adult (18+) | 8 |
There were 34 individual caregivers interviewed, including twenty-two mothers, ten fathers, and two grandmothers. While both grandmothers were not legal guardians of the patients, they were present at the time of diagnosis and were involved throughout treatment. Among the 11 patients interviewed, two were > 18 years of age and were interviewed alone, and nine were interviewed with a parent in the room. Medical providers interviewed included 12 primary pediatricians, seven emergency medicine physicians, and seven other subspecialty physicians involved in the patient’s initial diagnosis (Table 2).
Table 2.
Medical providers involved in initial diagnosis
| Type of physician | # Physicians |
|---|---|
| Primary care physician (pediatrics, family medicine) | 12 |
| Emergency medicine | 7 |
| Surgery (general) | 2 |
| Orthopedics | 2 |
| Hematology/oncology1 | 2 |
| Ophthalmology | 1 |
Pediatric hematology/oncology physician at a hospital outside that of the primary study institution. These two physicians were not members of patients’ primary/treating oncology teams and were introduced to the families as consulting physicians by emergency medicine and radiology
When asked about the initial diagnosis experience, families often discussed the language used by physicians to describe the diagnosis, their initial understanding following the discussion, and their preference regarding language and certain terminology. Physicians identified patient health literacy as an important factor in selecting language during a diagnosis discussion and identified additional factors that influence how they communicate a diagnosis to families, such as the definitiveness of a diagnosis and their prior relationship with the family (Fig. 1).
Fig. 1.
Identified themes from interviews regarding initial diagnosis experience
Themes from Patient and Caregiver Interviews
Reported Language Used by Physicians
Families reported a wide range of terms used by physicians to describe a patient’s diagnosis. Often, patients and families reported that the word “cancer” was explicitly used in the initial discussion. However, some recalled different words including “malignancy”, “tumor”, “mass”, or “neoplasm” that were used in discussion. Some recalled that specific types of cancer (e.g., leukemia, lymphoma) were used. In limited cases, the word “cancer” was never used by a physician. There were few families who, in reaching the “day one talk” with their primary oncologist, had not heard the word “cancer” prior to the discussion. However, many families talked to multiple physicians during the “day zero” phase, some of whom did not use the word “cancer” and some of whom did, impacting the ability to quantifiably gauge the use of the word. Table 3 outlines the terminology families recalled the various physicians using when they spoke about and described findings or a diagnosis.
Table 3.
Language used by physicians per patient/family interviews, by type of physician they spoke to
| Family | Type of cancer | PCP | ED | Other specialist | Hematologist/oncologist |
|---|---|---|---|---|---|
| 1 | Sarcoma | Tumor | Sarcoma | ||
| 2 | AML | Hematology/oncology | Leukemia | ||
| 3 | Pre B cell ALL | Cancer | |||
| 4 | Bladder rhabdomyosarcoma | Mass | Cancer | ||
| 5 | Osteosarcoma | Cancer | |||
| 6 | Pre B cell ALL | “Something definitely is up with him and we need blood test to know what’s happening”, | Leukemia | ||
| 7 | T cell ALL | “Knots of some sort in my chest”, mass | Lymphoma | Cancer | |
| 8 | Glioblastoma multi forme | “She didn’t bring up anything.” | Tumor, mass, growth, oncology | Malignant | |
| 9 | Pre B cell ALL | “Below the normal levels” | Leukemia | ||
| 10 | Osteosarcoma | Malignant neoplasm | Osteosarcoma | ||
| 11 | Retinoblastoma | PCP: “I’m not a specialist. I don’t want to say the wrong thing. Let’s review and I could be totally wrong. I’m just going to refer you”; Nurse: “Well worst comes to worst, he has cancer.” | Retinoblastoma, tumor | ||
| 12 | Neuroblastoma | “I don’t like her blood result.” | Blood cancer, leukemia | ||
| 13 | Low grade glioma | Mass | Cancer | ||
| 14 | Colon adenocarcinoma | Cancer | Mass | ||
| 15 | APML | Cancer | |||
| 16 | Ewing sarcoma | Cancer | |||
| 17 | Choriocarcinoma of ovary | Growth | Malignant, cancer | ||
| 18 | Optic pathway glioma | Tumor | Cancer | ||
| 19 | Chordoma | Mass, oncology | Cancer | ||
| 20 | Rhabdoid tumor | [After finding blood in stool], “I don’t think it’s anything but you should go to [local hospital] just get testing done to make sure-” | Mass, oncology | ||
| 21 | LCH of the spine | Lesion, cancer | |||
| 22 | Hepatoblastoma | Mass | |||
| 23 | Osteosarcoma | Cancer | |||
| 24 | T cell ALL | “Her white count was 65,000, her platelet count was 47 and she had a mediastinal mass on her X-ray”, oncology | |||
| 25 | Ewing sarcoma | Tumor, sarcoma | |||
| 26 | Neuroblastoma | Mass | Mass, oncology | ||
| 27 | Pre B cell ALL | “‘You need to come right away, he is really, really sick.’ They toldme he was neutropenic, they told me that his white blood cell count was through the roof. ” | Leukemia | ||
| 28 | Pre B cell ALL | Cancer | Malignancy | ||
| 29 | Pre B cell ALL | Infection, cancer |
When “cancer” was used in discussions (either in confirming a diagnosis or mentioned as part of a differential diagnosis), overall, families immediately grasped an initial understanding of the gravity of the situation. However, in cases where descriptors such as “mass” and “tumor” were used, families did not always realize that physicians had an additional concern for malignancy in the patient (Table 4a). Conversely, some families made their own interpretations and pushed physicians to be more specific in their language.
Table 4.
a–c Patient and family quotes surrounding reported language used by physicians
| a. Connection between descriptors (e.g., “mass”) and “cancer” unclear for some families |
|
| b. Poor health literacy impacted understanding when descriptors were used |
|
| c. Increased ability to navigate discussions with stronger health literacy |
|
Additionally, patient and family health literacy strongly impacted understanding of the patient’s health when descriptors other than “cancer” were used. Those with weaker health literacy often did not make the connection between “malignancy” and other terms often used interchangeably with “cancer” as cancer (Table 4b). Some discussed their confusion about the field of hematology/oncology and not initially understanding that they were being referred there for a cancer diagnosis. Others with stronger health literacy or experience in medicine reported a clearer understanding of physicians’ communication and their child’s diagnosis despite “cancer” not being used (Table 4c). Many discussed their ability to read between the lines and navigate between medical jargons. Those families frequently felt that they had been well informed by physicians about their child’s health, despite the lack of simple terms used.
Patient Language Preference
Patients and caregivers often noted the emotional weight of the word cancer and the shock, worry, or fear of hearing the possibility of a cancer diagnosis for the first time (Table 5a). “Cancer” is known to be a word with heavy connotations, and its use carries with it emotions and experiences families have had with others they have known with the disease or stories they have seen or heard. But despite the fear and grief associated with the word, many commented on their desire for straightforward, direct language during discussions. Despite the unavoidable distress of hearing the news of a child’s cancer diagnosis, families were often seeking a clearer understanding of their child’s illness and did not necessarily shy away from use of the word “cancer”, whether it was a strong consideration as part of a differential diagnosis or being confirmed (Table 5b). However, some families did prefer waiting until the diagnosis was more definitive to hear the word cancer, as it delayed the worry and fear associated with the diagnosis a bit longer (Table 5c).
Table 5.
a–c Patient and family quotes surrounding language preference
| a. Emotional weight of language used |
|
| b. Desire for straightforward language |
|
| c. Desire to avoid “cancer” until more definitive |
|
Themes from Physician Interviews
Impact of Physician Language on Patient and Family Understanding
Interpreted patient health literacy emerged as a key influence in how physicians communicate a diagnosis. Many acknowledged that families enter conversations with varying levels of familiarity with medical terminology, and it is the physician’s duty to adjust to their level of understanding when discussing. Physicians noted that terms like “malignancy” do not hold the same meaning as “cancer” for many patients (Table 6a). Additionally, some felt that “mass” and other descriptors such as “tumor” or “growth” could potentially be confusing and mask a concern for cancer to patients (Table 6b). One physician called use of these descriptors “unfair” to families, as descriptors can sometimes lead families to assume a more benign process. In total, some felt terms other than “cancer” had the potential to leave families in the dark, or “la la land” as noted by one physician, and delay acknowledgement of a more serious diagnosis than what was discussed. Notably, “malignancy” and other terms like “mass” or “lesion” were used in discussions with more than half of patients/families in this study (Table 3).
Table 6.
a–b Physician quotes surrounding how physician language choice impacts patient understanding of diagnosis
| a. Medical jargon is not necessarily appropriate language |
|
| b. Vague terminology masks concern for more serious diagnosis |
|
Definitiveness of Diagnosis and the Burden of Disclosure
The location of an oncologic process on physicians’ differential diagnoses seemed to impact how the diagnosis was discussed with families. When differentials were broad, preferred terms were “mass” and “tumor” without mentioning a concern for cancer. Physicians described a desire and tendency to stay objective about findings and next steps, without discussing diagnostic outcomes of those next steps or tests. Some acknowledged that this may give patients more “hope” than intended, but with benign processes on the differential, many felt this was an appropriate approach (Table 7a). When malignancy was a more likely diagnosis, some physicians felt more comfortable bringing it to families’ attention. Many felt at this stage, there was a responsibility to “prepare” families for a possible cancer diagnosis and thus were more likely to use the word “cancer” in early discussions. In their experience, this made conversation surrounding confirmation of a cancer diagnosis easier for both physicians and families. Overall, these physicians desired to give families a sense of what they may be facing as the likelihood of cancer increased (Table 7b). For some physicians, the index of suspicion had little impact on how they communicated with families and felt it was their responsibility to share an oncologic concern even if it was one of many considerations (Table 7c).
Table 7.
a–d Physician quotes surrounding how language is impacted by definitiveness of diagnosis as well as the burden of disclosing a diagnosis
| a. Cancer as part of a broad differential |
|
| b. Cancer a more likely diagnosis, desire to prepare families |
|
| c. Not impacted by where cancer is on a differential |
|
| d. Burden of disclosure |
|
Notably, regardless of where cancer fell on the differential diagnosis, many physicians discussed the concept of “responsibility” and “burden” in delivering the diagnosis (Table 7d). This notion of burden suggests an inevitable, uncomfortable conversation and must be carried out by one physician or another. Some described hesitancy to discuss a potential cancer diagnosis; as a general pediatrician or emergency physician, they did not have the expertise to answer all questions families might have. Some realized that physicians before them had used descriptors and that it was their duty to make clear to families the concern for cancer. This sentiment highlights a broad discomfort among physicians with these types of conversations; and with multiple physicians often involved in a diagnosis, it may be unclear who that “burden” is meant to fall on.
Relationship to Family
Primary care physicians (PCPs) particularly noted that their established relationship with families helped guide the discussion and inform what language was used around a potential cancer diagnosis. Having often known the family for years prior to discussion, these physicians felt they could better interpret what their patients’ families were ready to hear and have a sense of how best to convey that information at an appropriate health literacy level. Furthermore, having a better understanding of the family dynamics, some felt they could better predict how a parent might react to information and tailor the discussion in anticipation. Some PCPs also highlighted that for difficult diagnoses like cancer, they preferred to be the person to share that, rather than a specialist, as the families hear the diagnosis from a familiar voice and PCPs can leverage the relationship to set a positive tone for transition to oncologic care (Table 8).
Table 8.
Primary care physician quotes surrounding relationship to family
| Impact of preestablished relationships on diagnosis |
|
Discussion
This qualitative study demonstrates the difficulty and complexity of conveying the possibility of a cancer diagnosis to parents and children before it is definitive. Families and primary care physicians shared many of the same perspectives and experiences in receiving and giving a cancer diagnosis and had some similar perspectives of the factors that influenced the discussion. Language used during the diagnosis and the nuances around that emerged as a key theme from discussion with both groups.
Patients and caregivers often remembered the language and terminology used by physicians in early discussions before transitioning to oncology. The word “cancer” holds significant weight in society and holds many different connotations for individuals. Because it is such a powerful word, families remembered when that word was first used by a physician and what their reaction was. Inherently, families also remember when “cancer’ was not said and another term such as “malignancy”, “neoplasm”, “growth”, or “mass” was used. In those instances, families’ health literacy and experience with medical jargon correlated with their understanding of the diagnosis, with some patients being told a malignancy was found and not realizing that meant they had just received a cancer diagnosis. In other cases, the use of terms other than “cancer” put the burden on families to clarify what physicians meant and push them to be more direct.
Many physicians noted that patients have a wide range of health literacy and that it is important to use language they understand and have exposure to. Physicians cited broad terminology and medical jargon as unfair, unclear, and confusing for patients and at times could relieve the burden of diagnosis from physicians. They felt these words allowed physicians to feel like they had had a thorough conversation with families and provided a diagnosis while saving families, and likely themselves, from the emotions associated with the word cancer, but that that was irresponsible and in the long-run detrimental to the families.
However, study results from families who had never heard the word “cancer” suggest a disconnect between the beliefs of physicians and actual day-to-day practice. This highlights the importance of using simple, direct, and straightforward language with families when trying to convey a diagnosis. Furthermore, it emphasizes the need for physicians, particularly emergency department physicians and specialists to adjust their language universally to account for the possibility of lower health literacy as well as the additional difficulties that families may have absorbing information when emotions are strong. Many studies have discussed the impacts of cancer patient health literacy on level of participation in conversations with physicians, number of questions asked, and understanding of diagnosis and treatment plan [12, 13]. It is essential that for sensitive diagnoses, such as pediatric oncology, patients and parents leave conversations with the same understanding as physicians of the child’s diagnosis.
Of note, this study was conducted at a large, urban hospital which draws a highly diverse patient population. In this study, a subset of families were English-speaking immigrants and were likely to describe experiences associated with lower health literacies (e.g., not understanding associations between malignancy and cancer, not fully understanding pieces of information provided by physicians leading up to diagnosis). It is crucial that translators be present or special care taken to limit medical jargon and terminology with patients for whom English is not their first language.
In line with simple, direct communication, patients expressed a preference for honesty and straightforward conversations with physicians. Though many emotions were accompanied with the news of a potential cancer diagnosis or its confirmation, patients and caregivers did not necessarily shy away from the word “cancer”. Caregivers in particular emphasized a desire to know what was happening to their child, understand what they were facing, and have a clear idea of what would come next. Many noted that when physicians tried to “soften the blow” and use roundabout language, it made the process of receiving and accepting the diagnosis more difficult, as indicated by the parent who asked a pediatrician for the truth—“not some kind words” or “words to comfort me”.
Despite this patient preference, some physicians expressed hesitancy to using “cancer” and “malignant” in early conversations—either due to a broad differential or to a desire to “ease” patients into the diagnosis. These physicians conveyed the intention to not overly worry families, cause undue stress, or provide misinformation until more was known about the child’s illness. In this study, families generally preferred to hear if cancer was a part of the differential. However, it is important to note that all families interviewed ultimately received a confirmation of an oncologic process. It is difficult to assess the full impact of physicians who delayed using the word “cancer” compared with those who did not without also speaking to families who ultimately received a benign diagnosis. Future studies should include perspectives of families who received both benign and malignant diagnoses.
Conversely, other physicians felt it important to use the word “cancer” in early discussions with patients and caregivers, with the belief that it in some way helped prepare families for a potential confirmation of an oncologic diagnosis. The length of a differential did not greatly impact their use of “cancer” or another descriptor, and they felt that families should be made aware of all possible directions a diagnosis could take. These physicians noted that early usage of “cancer” made later disclosure and confirmation easier for both themselves and families. This aligned with general family preference for straightforwardness and clarity regarding the patient’s illness.
A smaller subset of families, though, did prefer waiting to hear the word “cancer” until there was greater certainty of the final diagnosis. They noted that hearing it earlier might have brought excessive worry, as some physicians voiced concerns about. This highlights the difficult balance physicians must find between direct, upfront language and gauging when families are ready to receive the information.
Some primary care physicians (PCPs) noted that finding that balance was sometimes easier for them, as they often had established relationships with families. They had longstanding knowledge of caregiver communication preferences and could potentially better anticipate reactions to a difficult diagnosis based on previous interactions. For this reason, some PCPs remarked that they often preferred to be the first physician to use “cancer” and convey a diagnosis to families, leveraging their relationship to provide comfort and support to families immediately.
In this study, however, many diagnosis discussions took place by nonPCPs, often emergency department physicians or other specialists. This is in line with previous studies evaluating which physicians deliver initial pediatric cancer diagnoses [2]. Many physicians do not have the opportunity to know families for years prior to diagnosis and must rely on other methods to quickly evaluate patient needs when delivering a diagnosis. The broad range of types of physicians who delivered diagnoses in this study emphasizes the need for all pediatric providers to have an awareness of family communication needs and preferences regarding oncologic diagnoses. Communication modules focused on pediatric oncology diagnoses may be an effective way to train physicians, particularly residents early in their careers, and provide them with tools to more effectively navigate these conversations with families. Future directions of this study hope to utilize patient and physician interview responses to inform communication trainings for pediatric providers.
One limitation of this study is that the patient and family population were sourced from a single, large academic institution in an urban mid-Atlantic city. As such, interview themes may not transfer to other patients or institutions, and there is a possibility that other themes may have emerged in a different setting. However, there was much diversity in patient age, race/ethnicity, and gender, and primary care/other diagnosing physicians represented multiple institutions across two states. This increases the likelihood that results and findings may resonate broadly despite using a singular institution for the patient population.
An additional limitation is that of patient, caregiver, and physician recall bias. As a retrospective qualitative study, there is a possibility that elements of conversation of past events may have been forgotten or misremembered. To mitigate this risk, all interviews were conducted within three months of the patient’s diagnosis.
Conclusions
There was wide variation in patient, caregiver, and physician experiences leading up to pediatric oncologic diagnosis in this study. Language used during initial discussions was a theme often discussed by both families and physicians, and our study reaffirmed communication themes surrounding breaking bad news that emphasize simple-language, honest conversations with patients. This study highlighted the role family health literacy plays in understanding of a patient’s diagnosis and elucidated a disconnect between general family communication preferences for upfront, straightforward discussions with some physicians’ hesitancy to use “cancer” in early diagnosis discussions. While many factors affected each physician’s language use during conversations, we hope an improved understanding of family preference and the impacts of health literacy may help guide future diagnosis discussions and improve family transition to oncologic care. For example, future research might include perspectives of how the “day zero talk” impact pediatric oncologists and their subsequent communications with patients and their families. It is not clear how initial conversations with PCP/ED prepare patients for their “day one talk.”
Supplementary Material
Acknowledgments
A special thanks to the patients, family caregivers, and medical providers who shared their experiences with us.
Funding
This research was made possible by funding support from the Johns Hopkins School of Medicine Dean’s Summer Research Funding as well as the Johns Hopkins School of Medicine Primary Care Leadership Track Funding Grant.
This article was made possible by additional support from training grant: T32 CA 009314 (PI: Platz).
Footnotes
Conflict of Interest The authors declare that they have no conflict of interest.
Ethical Approval All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee Internal Review Board of Johns Hopkins University School of Medicine (IRB CIR00041909) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s13187-020-01874-3) contains supplementary material, which is available to authorized users.
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