A Qualitative Study of the Initial Diagnosis and Treatment Experience of Black Patients with Newly Diagnosed Acute Myeloid Leukemia.

Introduction

Acute myeloid leukemia (AML) is the most common acute leukemia and is associated with a poor prognosis, with an estimated five-year survival of only 32%. 1 Despite recent advances in the treatment landscape, access to care remains unequal, and patients from under-represented racial and ethnic backgrounds continue to have worse outcomes. 2 – 4 For example, Black patients are less likely to enroll in clinical trials and undergo allogeneic hematopoietic stem cell transplant, which provides a chance for cure, and therefore experience worse overall survival in comparison with White patients. 5 – 9 The underlying drivers of these disparities are poorly understood and remain underexplored.

Preliminary evidence points to multiple barriers, including distal factors (structural racism), intermediate factors (health care access, clinical and molecular characteristics), and proximal factors (treatment patterns and complications). 10 A better understanding of factors that may influence outcomes along the trajectory of care is needed to develop interventions that address disparities. We were particularly interested in exploring these factors in newly diagnosed Black patients with AML.

A critical aspect of understanding patterns of care to address disparate outcomes is understanding patients’ experiences. Published patient experience studies in AML have included cohorts with a greater representation of White patients. 11 , 12 To date, little research has focused on Black patients despite their well-described poor outcomes. Therefore, in this qualitative study, we sought to understand the experience of Black patients with newly diagnosed AML through one-on-one interviews.

Methods

Study design, eligibility, recruitment, and consent process

In this qualitative study, approved by Duke Health Institutional Review Board (Pro00109085), we reviewed inpatient and outpatient records from the Duke Cancer Institute. Using purposive sampling, we selected patients with newly diagnosed AML (i.e., diagnosed from 7/1/2021 to 7/31/2022), who self-identified as Black, were ≥18 years of age, had primary or secondary AML, and were receiving the first line or salvage therapy or had received an allogeneic stem cell transplant. Based on the concept of “information power” to guide adequate sample size for qualitative studies, 13 , 14 data saturation was achieved over a one-year period with 19 patients. We excluded two patients (one deceased and one with acute undifferentiated leukemia), and 17 remained. Of this number, five declined to participate (due to poor timing), and two were unable to complete the consent; thus, 10 patients were approached in person or via phone, agreed to participate, completed electronic consent and the preinterview survey, and were interviewed ( Fig. 1 ). The investigative team members were not part of the individual care teams.

Data collection: Preinterview survey, interview, and electronic medical record clinical data abstraction

The preinterview survey included demographic and socioeconomic factors and the Control Preferences Scale (a validated instrument assessing patients’ preferred role in the treatment decision-making process). 15 One patient had missing education and control preference data. A.O.T., a Black female physician conducted all the interviews between 4/2022 and 10/2022, thus interviews were race-concordant. Nine were over Zoom and one was in person (hospital). All one-time interviews (three including caregivers per patient preference) lasted approximately 30–45 minutes and were audio recorded and transcribed. Transcripts were not corrected by patients. Questions followed a semistructured guide developed by the study team, focused on the diagnosis and treatment experience, coping, and challenges (see Supplementary Data). Patients were compensated with $25 vouchers at interview completion. Clinical data were collected from the electronic medical record to provide insight into factors relevant to the patient experience: AML status (primary or secondary), treatment regimen, and primary insurance.

Data analysis

Transcripts were double coded by two authors (J.I. and L.J.F., an experienced qualitative researcher) using a rapid analytic approach to qualitative thematic analysis. 16 – 18 This process involved (1) formulation of neutral domain names from each interview question; (2) development of a summary template using domain names; (3) assessment of the usability of the summary template; (4) summarization of transcripts using the summary template; (5) creation of a matrix with domain names and respondent answers; and (6) identification of recurrent themes from the matrix. Patients did not provide feedback on themes.

Results

Baseline characteristics

Of the 10 patients interviewed, the median age was 63.5 years (range 36–82). Six were male, and seven had secondary AML. Hypomethylating agents were the most common treatment (six patients) and were combined with Venetoclax in four. Six were married, four had Medicare, and six had more than a high school degree. Seven preferred to share decisions about treatment with their doctor ( Table 1 ).

Categorization of themes/subthemes from interviews

The main interview themes fell under three broad categories: (1) the diagnosis and treatment experience, (2) challenges that arose, and (3) coping strategies, bolded in the paragraphs below with representative quotes. Additional quotes are in Table 2 .

The diagnosis and treatment experience

Experience of bias

In the initial diagnosis period, patients shared experiences perceived to be a result of bias , including feeling unheard, negative racial perceptions and assumptions . A 37-year-old female described being dismissed when she initially presented to care, “… They wrote it off like nothing is wrong… but something was definitely wrong” and alluded to a resulting delay in diagnostic evaluation. Regarding negative assumptions related to race , a caregiver of a 64-year-old male mentioned, “There is an expectation that I’m going to come in and be this crazy woman. I think there is a difference when you’re a person of color when you go through this… I think it’s a different experience. There is the expectation that you’re not educated, that you don’t want to fight for what you feel you need to have… it’s different, things that I have felt.”

Shock and urgent treatment decision making

Patients experienced a gradual onset of nonspecific symptoms , such as fatigue, shortness of breath, and loss of appetite, which they initially dismissed, and many were shocked by the eventual diagnosis of AML and commented on having to make quick decisions due to the lethality of AML. They also discussed fear and worry with hearing the initial diagnosis of AML, especially after the gradual onset of symptoms. For example, a 73-year-old male mentioned, “It was a complete surprise… [I] was a little fearful, mostly wondering how this could be…” The rapidity of decisions surrounding treatment for a chance of survival was apparent from a 56-year-old male who stated, “… [my doctor] told me that it was very rapidly approaching acute myeloid leukemia [and that] … you want to get started with treatment.” Similarly, a 64-year-old male said, “[I was told] you go through this [allogeneic stem cell transplant] or you have twelve weeks [to live].”

Trust and treatment decision making

Many patients developed a trusting relationship with their oncologist and articulated that the key to this quickly formed relationship was frankness about specifics of the diagnosis, thorough explanations about the diagnosis and treatment options, and the use of language that maintained hope and the feeling that their best interests were at heart. Others also mentioned trust in the institution from their positive impression of our institution from prior experiences. Overwhelmingly, patients did not perceive differential treatment based on race. These findings related to trust did not differ by baseline demographic and disease-related characteristics.

Trust in the primary oncologist was notable in discussions. A 73-year-old male who said, “I have confidence and trust in my doctor, and my doctor, he’s awesome, he has been awesome, I don’t think I could have found a better doctor, so I really trust, I believe he is leading me in the right direction.” Another 73-year-old male noted that he felt he had appropriate explanations to make the best decision and stated, “The more [my doctor] talked to me about it and explained it to me… I said ok, we need to do this… I’m for [transplant] because we got to do something because I couldn’t just do number one [i.e., chemotherapy] and not do anything.”

Trust in our institution related to the positive reputation perceived was illustrated by some respondents. A 37-year-old female stated, “… I trusted that they would save my life without any bias opinions, or any thinking that well she is poor, or she is Black, or she doesn’t have enough insurance, I trusted them to just say she’s a person and they were going to save her life.” Similarly, a 68-year-old female stated “[I thought] crap! Until they said it’s the most common kind, and then I [thought] if it’s the most common kind, they’ve done research on it, it may have been in people of other races, not my race, but they have an idea where to start.” This institutional trust came from either personal experiences or the experiences of others (i.e., family and friends). An 83-year-old female who had prior personal experience mentioned, “…once I took my chemo and radiation, I didn’t have any more trouble for the last 17 years… I have only had good experiences since then.” A caregiver of a 64-year-old male mentioned, “…. I had a friend who had breast cancer, who came to [our institution] to be treated… and she spoke very highly of it.”

Regarding the role of race in treatment discussions , our cohort did not feel that this had an impact on treatments. An 83-year-old female stated, “I think I had the best treatment as anybody else….” Similarly, a 73-year-old-male said, “I don’t think [race played a role], I don’t think that came into the picture at all… because the doctor’s mannerisms let me know that he cares….”

Sharing with others

When discussing information about their experience with the AML diagnosis and treatment, patients had varied preferences. Some expressed openness with family and friends, spurred by a need for support or a feeling of being helpful to others. Others preferred privacy as a means of controlling the narrative and managing the time and emotional toll it can take to share the same information. A 68-year-old female noted, “I don’t care who knows, I am an open book… it might help somebody else, and if you can help somebody, you should.” In contrast, an 83-year-old female stated, “[I kept] it on the down low so I wouldn’t have a whole bunch of phone calls, that you got to repeat the same thing over and over…”

Challenges that arose

Physical limitations

Although treatment provided a path to survival, many shared concerns related to changes in their physical appearance and abilities. The latter was secondary to fatigue and negatively impacted quality of life and independence . For example, a 64-year-old male mentioned, “A lot of stuff I can’t do… I can’t go fishing… can’t mow the yard, it’s hard for me to help around the house.” He also said, “… if it weren’t for my wife, I don’t know what I’d do because sometimes I need help taking showers. I can’t cook… there really isn’t nothing I can do. I sit around. I get so tired. I hate to see her doing all the work.” Similarly, a 56-year-old male stated, “… the [second] most difficult thing was dealing with some of the symptoms when I couldn’t do things like go to the gym.”

Psychological impact

Many patients expressed fear, sadness, and worry with the new AML diagnosis. A 64-year-old male mentioned, “It’s hard when you have all these medications you’re taking; it affects you. Some days you wake up, and you have good days, and some days you wake up and have bad days.” Some discussed the transition to acceptance of the diagnosis over time and the resulting motivation. A 37-year-old female said, “I am always trying to be a step ahead of the game [with treatment], like if this isn’t it, let’s see what else there is.”

Financial constraints

Patients discussed increased costs and a loss of income from being unable to work . A 65-year-old man stated “… with a business, if you don’t have anything coming in, that puts a little pressure on you because bills got to be paid, one way or other….” After being told he would be unable to work for a period of time, a 56-year-old male stated, “…I expected a month or two, and he told me it would be a while… [and] the average patient had to apply for disability because they had to take a leave of absence from work for about a year… it was a lot to process, I could feel the moisture come into my eyes….”

Coping strategies

Faith/religion/spirituality

The prominent role of faith/religion/spirituality was clear and expressed by nine out of ten patients as a source of support. These patients did not differ by baseline demographic and disease-specific characteristics. Patients highlighted belief in a higher power, prayer, the availability of treatment options as a reflection of the higher power’s work, and the AML diagnosis strengthening beliefs. A 65-year-old male said, “… believing in something is always good. You always want to be a part of something.” A caregiver of a 64-year-old male mentioned, “… we keep prayer in our life. We do that every day, sometimes 2–3 times, and it has helped a whole lot.” A 69-year-old female mentioned, “… my God and my doctors. Everything goes together. They work together. You use the resources He provides, or you don’t.” Finally, a 73-year-old stated, “I know in whom I believe, and I know God has brought me through many things, and I know that he didn’t bring me this far to leave me….”

Support systems

Patients highlighted their diverse support systems, including friends, family, neighbors, church members, clinical teams, the Leukemia/Lymphoma Society (Blood Cancer United), and other patients. This support was highlighted by patients across the board with no differences with respect to age, treatment type, primary vs. secondary AML, educational, marital, and insurance status. Referring to his primary oncologist, a 73-year-old male said, “Every morning… he came to the room at 6 o’clock in the morning… I don’t know of many doctors that would do that….” A 56-year-old male mentioned, “There has been an outpouring of love, prayers, and affection from family, friends, and my fraternity brothers.” He also stated, “When I was in the hospital, the nurses were amazing and took excellent care of me… and they would make shakes for me [when I didn’t feel like eating].”

Discussion

To our knowledge, this study is the first to exclusively examine the lived experience of newly diagnosed Black patients with AML. Our cohort described their experiences related to (1) diagnosis and treatment, highlighted (2) challenges that arose, and described (3) coping strategies. Some unique aspects of the experience shared by patients include the overwhelming role of faith/religion/spirituality in coping and the experience of bias in the initial diagnosis period. Several themes were consistent with prior AML patient experience work, including shock and urgent decision making , the role of trust in the institution and their oncologist in treatment discussions and decision making, the importance of diverse support systems , physical limitations, financial constraints , and the psychological impact of the diagnosis; thus, our work adds to the body of literature.

Patients noted bias during the initial diagnosis period. They did not explicitly characterize the basis of this bias, but a caregiver felt it had racial underpinnings. Racial bias in the delivery of oncological care is pervasive and, unfortunately, has been well described. Black breast, prostate, and colorectal cancer survivors have described longer wait times, not getting access to all treatment options, and poor interactions at multiple levels (desk staff, physicians, and insurance administrators). 19 , 20 Interestingly, our cohort did not feel like racial bias played a role in the receipt of AML therapies, even on explicit questioning, and felt that once diagnosed, they received equal care. Three possible explanations are as follows:

We hypothesize that, in comparison with solid tumors, with the acute nature of most AML presentations, the need for urgent initiation of treatment, and the more specialized and acute tertiary care-based treatment of AML, may minimize bias related to the receipt of AML therapy, in part due to the standardized approaches to the management of AML. At presentation, all patients receive a bone marrow biopsy with guideline-based ancillary testing to aid in risk stratification and evaluation of targetable mutations. This is followed by the decision between intensive versus less-intensive therapy backbone based on functional status. The abovementioned features of AML can impact the experience of patients in other ways, and in qualitative work by LeBlanc et al., shock/suddenness, uncertainty, poor clinician communication, and challenges with processing information were some of the concerns mentioned by patients. 12

The initial diagnosis period may be more prone to bias, unlike the treatment phase, due to differences in where there is initial suspicion for AML. Particularly for patients with a primary AML diagnosis who are more likely to be present to an emergency room or urgent care that could have a lower suspicion for AML, compared with those with secondary AML who follow closely with an oncologist. Although bias can be at play, it is also important to consider the challenges that can arise with diagnosing rare illnesses. In a rare disease like AML, patients may not present acutely but rather with vague symptoms such as fatigue and poor appetite, which can often be misattributed. 21 , 22 Depending on the site of presentation, there can also be varying awareness/consideration of a rare hematological malignancy like AML. 23 Additionally, there can often be delays in the diagnostic workup for AML if a patient presents with cytopenias but no blasts, with long wait times for hematology evaluations and bone marrow biopsies, which can make the diagnosis challenging. 24

Trust could have played a role in patients not reporting experiences of racial bias due to the development of early and trusting relationships between patients and their oncologist in the setting of urgent treatment. Patients may have been reluctant to report mistrust despite race concordance between the interviewer and interviewees due to fear that any concerns shared could affect their ongoing treatment, although the interviewer was not a member of the treatment team. Key drivers of medical mistrust include patient–provider discordance (race, ethnicity, primary language), experienced/perceived/anticipated discrimination, negative view of Western medicine, and experienced/perceived low-quality care. 25 Trust and effective communication are critical to treatment decision making. 12 , 26

Among Black patients, high rates of medical mistrust in the receipt of health care have been well described. 27 A cross-sectional survey from the Health Information National Trends Survey of 6252 adults in 2022 noted medical mistrust among 62.3%, and 67.8% of these respondents were Black. 28 A qualitative study focused on factors impacting COVID-19 vaccine decision making in Black patients highlighted that mistrust was rooted in prior experiences with discrimination, feeling dismissed by their health care provider with provider insistence on specific treatments, and feeling like just a number. 29 In audio-recorded cardiology encounters prior to a communication coaching intervention, Black patients had a statistically significantly lower median number of trust statements and a decreased likelihood of fully open conversations. 30

In oncology, medical mistrust is also pervasive. In an observational study of men with prostate cancer, African American race, fewer years of education, seeing clinicians for a more extended period (>3 months), and lower perceptions of group interdependence were associated with higher levels of mistrust. 31 Similarly, in a qualitative study examining the experiences of Black and White multiple myeloma patients and their caregivers (dyads), Black dyads expressed knowledge of the Tuskegee Study, the related legacy of mistrust in the health care system, and thus the need for self-advocacy in receipt of myeloma care. 32 Overall, medical mistrust is more prevalent among Black patients across oncology and nononcology specialties and is influenced by multiple factors.

To address the possible reluctance to share issues related to mistrust that could have been at play in our work, future works could incorporate: (1) anonymous surveys, (2) longer term follow-up to develop longer term relationships, which could make patients more comfortable sharing, and (3) a multidisciplinary research team that includes race-concordant social workers and nurses who patients may feel more comfortable sharing negative experiences with compared with physicians.

The importance of faith/religion/spirituality in coping for cohorts of patients from different racial and ethnic backgrounds has been discussed in prior qualitative work in both solid tumors and hematological malignancies, including AML. 33 , 34 For example, Newcomb et al. evaluated the role of approach-and avoidant-oriented coping techniques in 360 patients with hematological malignancies hospitalized for autologous or allogeneic hematopoietic stem cell transplants. Forty-four percent reported using approach-oriented coping techniques, including but not limited to religion. 35

In our work, 9 out of 10 patients endorsed faith/religion/spirituality as a critical coping mechanism, and the overwhelming importance of faith/religion/spirituality is consistent with prior studies in Black patients with different malignancies. 36 In a qualitative study of Black patients with both solid and liquid tumors, notable themes that emerged related to faith/religion/spirituality were God as a helper, God as a healer, the importance of prayer, and Bible/Scripture study. 34 Similarly, among Black breast cancer survivors, religiousness, spirituality, and God were named as a source of strength throughout the initial diagnosis, treatment, and recovery. 37 , 38 Although the prominent role of faith/religion/spirituality is not unique to our cohort, the overwhelming endorsement of its role in coping highlights opportunities to develop targeted interventions to support faith and spiritual needs.

Like prior works, our cohort described the shock of the AML diagnosis, the need for urgent treatment decision making, physical and psychological implications, and the need for diverse support systems. In these studies, AML patients have cited negative emotional responses related to their diagnosis (fear, shock, powerlessness, uncertainty), and the importance of support from family, friends, and health care professionals. 11 , 12 , 33 , 39 , 40 Nissim et al. described the initial traumatic experience of the AML diagnosis and hospitalization, as well as the resulting psychological response to the inpatient induction treatment. 41 Similarly, Richardson et al. mentioned that the top two worries expressed by patients and their caregivers were related to “the possibility of dying from AML” and “long-term side effects of treatments.” 42

For financial constraints noted in our work, similarly, in a single-center study of patients with acute leukemia (acute myeloid and lymphoid leukemia), roughly half (54%) of the patients surveyed over 6 months reported financial toxicity. 43 A qualitative study of AML patients in remission in Australia described the burden of AML-attributable costs, having to accommodate for the impact of AML on paid work, the financial strain from AML, and concerns about the future and future familial financial burden. 12 , 44

Limitations

There are some limitations to this research worth mentioning. First, our sample size of ten after exclusions was small, but our sampling technique was based on the concept of informational power, common in qualitative research. Given the rarity of AML in general and in patients from underrepresented racial and ethnic groups, we believe this was a reasonable number of patients. Second, the experiences of patients we interviewed may not be generalizable to the experiences of all Black patients. The goal of qualitative research is not to achieve generalizability but to understand the experience and perspectives of a particular group. Third, patients may not have felt comfortable sharing negative experiences, since they were interviewed by a race concordant clinician at the institution where they received care, even though the interviewer was not part of their treatment team. Despite limitations, this work is novel in describing specifically and deeply for the first time the unique experience of Black patients with newly diagnosed AML.

Conclusion

Black patients with AML have worse outcomes than their White counterparts. Inequitable access to treatments, structural racism, and racial bias are just some of the factors that lead to these disparate outcomes, but individual patient experience can have an impact on outcomes. Thus, our work focused on the experience of Black patients with newly diagnosed AML. Exploring the initial diagnosis and treatment period, understanding challenges that arose, and coping strategies employed in a population where there has been limited patient experience work highlighted the experience of bias during the initial diagnosis period and the vital role of faith/religion/spirituality in coping. Surprisingly, patients expressed trust in their oncologist, which was instrumental in treatment decision making.

Our findings emphasize the continued need for interventions to support Black patients with serious illnesses like AML to improve health care equity by supporting faith/religion/spirituality, reducing diagnostic bias, and continuing to build trusting relationships. To support faith/religion/spirituality, future studies should use mixed methods to gain perspectives from oncologists, patients, caregivers, and spiritual/religious leaders to jointly develop programs/initiatives that can be integrated into the health system. To reduce bias and continue to build trust, clinicians should continue to engage in implicit bias and communication training at prespecified and regular intervals, for example, quarterly.

Authors’ Contributions

Conceptualization: A.O.T.; Methodology: A.O.T., L.J.F., K.S.J., and T.W.L.; Investigation (qualitative interview data collection): A.O.T.; Formal analysis: A.O.T., L.J.F., J.I., K.S.J., and T.W.L.; Writing—original draft preparation: A.O.T.; Writing—review and editing: A.O.T., L.J.F., K.S.J., J.I., K.W.H., and T.W.L.; Project administration: K.W.H.; Funding acquisition: A.O.T., L.J.F., and T.W.L.; Supervision: T.W.L.

Supplemental Material

sj-docx-1-pmr-10.1177_26892820251403847 — Supplemental material for A Qualitative Study of the Initial Diagnosis and Treatment Experience of Black Patients with Newly Diagnosed Acute Myeloid Leukemia

Supplemental material, sj-docx-1-pmr-10.1177_26892820251403847 for A Qualitative Study of the Initial Diagnosis and Treatment Experience of Black Patients with Newly Diagnosed Acute Myeloid Leukemia by

T.W.L. reports honoraria for consulting/advisory boards from AbbVie, Agilix, Agios/Servier, Astellas, AstraZeneca, Beigene, BlueNote, BMS/Celgene, CareVive, Flatiron, Genentech, GSK, Lilly, Meter Health, Novartis, and Pfizer; speaking-related honoraria from AbbVie, Agios, Astellas, BMS/Celgene, and Incyte; equity interest in Dosentrx (stock options in a privately held company); royalties from UpToDate; research funding from the AbbVie, American Cancer Society, AstraZeneca, BMS, Deverra Therapeutics, Duke University, Jazz Pharmaceuticals, Blood Cancer United, the National Institute of Nursing Research/National Institutes of Health, and Seattle Genetics. All other authors have no competing interests.

Funding Information: This study was supported by funding from the Duke Internal Medicine Faculty Resident Research Grant and the American Society of Hematology, Hematology Inclusion Pathway Resident and Fellow Award to Allison O. Taylor. Allison O. Taylor's work is also supported by Conquer Cancer. The qualitative analysis aspect of this work, done by Laura J. Fish, was supported by the Duke Cancer Institute Behavioral Health and Survey Research core as part of the P30 Cancer Center Support Grant (Grant ID: P30 CA014236). Thomas W. LeBlanc’s work on patient experience and palliative care integration in hematology is supported in part by a Scholar in Clinical Research grant from Blood Cancer United..

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Cite this article as: Taylor AO, Fish LJ, Herring KW, Infield J, Johnson KS, and LeBlanc T (2025) A qualitative study of the initial diagnosis and treatment experience of black patients with newly diagnosed acute myeloid leukemia, Palliative Medicine Reports , 2026, 7, 26892820251403847, DOI: 10.1177/26892820251403847

Abbreviations

Acute myeloid leukemia

Coronavirus disease 2019

number

versus