"They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.

BACKGROUND: Medical mistrust, rooted in unethical research, is a barrier to cancer-related health care for Black/African American (AA) persons. Understanding trust, mistrust, and health care experiences is crucial, especially in multiple myeloma (MM), which disproportionately burdens Black/AA persons in incidence and survival. STUDY PURPOSE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena. METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc). RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns. CONCLUSION: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.

"A lot to manage and still have some kind of a life": How multiple myeloma impacts the function and quality-of-life of Black-White patient-caregiver dyads.

BACKGROUND: Multiple myeloma (MM) is an incurable debilitating blood cancer associated with the lowest health related quality of life (HRQoL) of all cancers. With nearly 88% of adults aged ≥55 years at diagnosis, age-associated physical losses, comorbidities, and social factors contribute to worsening HRQoL. This qualitative study assessed dyadic (patient-informal caregiver) perspectives on the factors contributing to HRQoL in MM survivors. METHODS: We recruited 21 dyads from the UNC-Chapel Hill Lineberger Comprehensive Cancer between 11/2021 and 04/2022. Participants completed a single dyadic semistructured interview capturing broad perspectives on MM. We used ATLAS. ti v 9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk, Inc.). This iterative approach allowed the exploration and identification of themes within and across transcripts. RESULTS: The mean age at enrollment was 71 years (median: 71, range: 57-90) for patients and 68 years (median 67, range: 37-88) for caregivers. All dyads were racially concordant (11 Black/AA and 10 White). However, we aggregated the findings due to no consistent racial differences. Six themes related to (1) physical burden, (2) treatment challenges, (3) losses of independence, (4) caregiver burden, (5) patient and caregiver perseverance, and (6) adjustment to a new normal were identified. Dyads also experienced MM together, resulting in patients and caregivers experiencing changes in their ability to engage in physical and social activities, which further contributed to poor HRQoL. Patients' increased need for social support led to shifts in the caregiver roles, resulting in caregivers feeling burdened by their responsibilities. All dyads acknowledged the need for perseverance and adaptability to a new normal with MM. CONCLUSION: The functional, psychosocial, and HRQoL of older patients with MM and their caregivers remain impacted ≥6 months after a new diagnosis highlighting clinical and research opportunities to focus on preserving or improving the health of dyads living with MM.

Treatment decision conversations, symptoms, and functional status in older adults with advanced cancer: An exploratory study utilizing mixed methods.

INTRODUCTION: Adults 65 years of age or older with metastatic cancer face complicated treatment decisions. Few studies have explored the process with oncology clinicians during clinic encounters. Our exploratory study evaluated whether symptom burden or functional status impacted treatment decision conversations between older adults, caregivers, and oncology clinicians in a single National Cancer Institute within the Mountain West region. MATERIALS AND METHODS: We conducted an observational, convergent mixed methods longitudinal study between November 2019 and January 2021; participants were followed for six months. The MD Anderson Symptom Inventory (MDASI) and Katz Index of Independence in Activities of Daily Living (ADL) were administered prior to clinical encounter. Ambulatory clinic encounters were audio recorded, transcribed, and analyzed. Nineteen older adults with a metastatic cancer diagnosis or a relapsed refractory hematologic malignancy were approached to achieve a sample of fifteen participants. The main outcome of interest was the number and quality of treatment decision making conversations, defined broadly and encompassing any interaction between the participant and oncology provider that involved (a) an issue or concern (e.g., symptoms, quality of life) brought up by anyone in the room during the clinical encounter, (b) a clinician addressing the concern, or (c) the patient or caregiver making a decision that involved a discussion of their goals or treatment preferences. RESULTS: Nine men and six women with a mean age of 71.3 years (6.6; standard deviation [SD]) were enrolled, and four died while on study. Participants were followed from one to ten visits (mean 4.5; SD 2.8) over one to six months. Of the 67 analyzed encounters, seven encounter conversations (10%) were identified as involving any type of treatment decision discussion. The seven treatment decision conversations occurred with five participants, all male (although female participants made up 40% of the sample), and 63% of participants who reported severe symptoms on the MDASI were female. Severe symptoms or functional status did not impact treatment conversations. DISCUSSION: Our results suggest that older adults with incurable cancer and their oncology clinicians do not spontaneously engage in an assessment of costs and benefits to the patient, even in the setting of palliative treatment and significant symptom burden.

Understanding Patients' Decisions to Obtain Unplanned, High-Resource Health Care After Colorectal Surgery.

Readmissions and emergency department (ED) visits after colorectal surgery (CRS) are common, burdensome, and costly. Effective strategies to reduce these unplanned postdischarge health care visits require a nuanced understanding of how and why patients make the decision to seek care. We used a purposefully stratified sample of 18 interview participants from a prospective cohort of adult CRS patients. Thirteen (72%) participants had an unplanned postdischarge health care visit. Participant decision-making was classified by methodology (algorithmic, guided, or impulsive), preexisting rationale, and emotional response to perceived health care needs. Participants voiced clear mental algorithms about when to visit an ED. In addition, participants identified facilitators and barriers to optimal health care use. They also identified tangible targets for health care utilization reduction efforts, such as improved care coordination with streamlined discharge instructions and improved communication with the surgical team. Efforts should be directed at improving postdischarge communication and care coordination to reduce CRS patients' high-resource health care utilization.

Surgical patient values frame and modify the impact of risk factors for non-routine postdischarge care: A mixed-methods study.

BACKGROUND: Adult colorectal surgery patients continue to have high rates of readmissions, despite known risk factors for non-routine postdischarge care (emergency department (ED) visit or rehospitalization) and countless interventions to address these. It is unclear how the difficult-to-quantify patient perspective frames and modifies the impact of these quantifiable risk factors. STUDY DESIGN: We identified consecutive adult inpatient colorectal surgery patients from 2017 to 2018. This mixed methods study merged data from electronic health records and in-depth patient interviews. RESULTS: We enrolled 258 participants, surveyed 167, and interviewed 18. Depressive symptoms represent one of many risk factors confirmed to increase non-routine healthcare utilization (RR 1.85, 95% CI 1.02-3.37), though the patient perspective explained why these symptoms seemed to greatly impact some patients more than others. Additionally, consistent with patient report, patients with non-routine postdischarge care (26%) were less likely to report communication with their surgical team (80% vs 97%, p < 0.001). CONCLUSION: Patient perspectives add depth and understanding of the impact of risk factors on non-routine post-discharge care. This expanded knowledge explains why one patient is more likely to visit an ED close to home whereas another patient might prefer to visit their surgeon's clinic directly. Effective strategies to reduce unplanned postdischarge care should be tailored.

Simplifying healthful choices: a qualitative study of a physical activity based nutrition label format.

BACKGROUND: This study used focus groups to pilot and evaluate a new nutrition label format and refine the label design. Physical activity equivalent labels present calorie information in terms of the amount of physical activity that would be required to expend the calories in a specified food item. METHODS: Three focus groups with a total of twenty participants discussed food choices and nutrition labeling. They provided information on comprehension, usability and acceptability of the label. A systematic coding process was used to apply descriptive codes to the data and to identify emerging themes and attitudes. RESULTS: Participants in all three groups were able to comprehend the label format. Discussion about label format focused on issues including gender of the depicted figure, physical fitness of the figure, preference for walking or running labels, and preference for information in miles or minutes. Feedback from earlier focus groups was used to refine the labels in an iterative process. CONCLUSIONS: In contrast to calorie labels, participants shown physical activity labels asked and answered, "How does this label apply to me?" This shift toward personalized understanding may indicate that physical activity labels offer an advantage over currently available nutrition labels.