Sleep health in young women with breast cancer: a narrative review.

PURPOSE: The purpose of this narrative review was to synthesize the evidence on sleep health in young women with breast cancer and provide recommendations for clinical practice and research. METHODS: Multiple databases were searched (OVID Medline, OVID PsycINFO, OVID Embase, and Scopus) using the search terms "breast neoplasm", "young women", "sleep", "sleep disturbance", "sleep problems", "sleep deficiency", and "insomnia". There were 467 titles and abstracts screened, and 82 full-text papers were reviewed, yielding 11 research publications for inclusion. RESULTS: Sleep problems are prevalent among young women with breast cancer and are associated with vasomotor symptoms of menopause and psychological symptom distress. The evidence, however, is weak due to methodological and design aspects of the studies. CONCLUSIONS: Poor sleep health in women with breast cancer is a clinically relevant problem that persists after treatment. As sleep is multidimensional and multifactorial, future research should evaluate sleep with objective sleep measures as well as self-reports; consider longitudinal designs; include factors that potentially contribute to poor sleep quality, such as physical and psychological symptom distress, family stressors, and competing life demands for this age group; and explore the perspective of this younger population of survivors on sleep. For clinical practice, survivorship visits should incorporate sleep assessment for all breast cancer survivors, especially younger women.

A Focus Group Study of Retirement-Age Nurses: Balancing Tension and a Love of Nursing in a Changing Healthcare Environment.

OBJECTIVE: The aims of this study were to explore the experience of retirement-age nurses and identify decision-making factors and innovations to enhance retention. BACKGROUND: A national shortage of nurses has created challenges to preserving quality patient care and level of nursing competency and managing turnover costs. METHODS: A qualitative study using focus groups was conducted of nurses 55 years or older who were working or recently retired. Data were audiotaped and transcribed verbatim, with content analysis used to code in an iterative process until consensus was reached. RESULTS: The tension of balancing the love of patient care within a changing healthcare system was described. Patient acuity, competing roles, and the centrality of computers were stressors and integrally related. Flexibility in work schedules and new practice models were important to retirement decision making for work-life balance and retention. CONCLUSION: Passion for patient care dominated decisions to continue working. Innovations in practice models and scheduling offer opportunities to enhance the retention of experienced nurses.

Factors associated with sleep health in young women after breast cancer treatment.

Young women with breast cancer (YWBC) report physical and psychological symptom distress after therapy but little is known about their sleep health. The purpose of this study was to identify sociodemographic, clinical, and psychosocial factors associated with sleep health and assess the potential role of appraisal of illness and coping on sleep health. An adapted cognitive appraisal and coping conceptual framework guided the study. We used a cross-sectional design with 159 women who were diagnosed with stage I-III breast cancer ≤50 years old. Sleep health was measured by the Pittsburgh Sleep Quality Index (PSQI). The mean age was 43.6 years (SD = 6.8), the majority of whom were non-Hispanic White (84%) and completed chemotherapy or radiotherapy (>70%). More than half of participants (55%) reported poor sleep health (PSQI > 8), and those with worse family functioning and from a racial/ethnic minority group were significantly more likely to have poor sleep health. Cognitive appraisal had a minimal mediation effect for anxiety on sleep health, and coping did not mediate the effect of any psychosocial variables on sleep health. Poor sleep health is a significant clinical problem in YWBC. Further research is needed to explore sleep health disparities among diverse cancer survivors and to examine sleep health in the context of family. Sleep assessment, management, and appropriate referrals to sleep providers should be part of routine survivorship care.

Exploring the effects of genomic testing on fear of cancer recurrence among breast cancer survivors.

OBJECTIVE: Fear of cancer recurrence (FCR) is the greatest unmet psychosocial need among breast cancer survivors (BCS). The Oncotype Dx® test predicts the 10-year risk of distant recurrence and benefit of adjuvant chemotherapy among women with early stage hormone receptor-positive breast cancer. Despite the test's clinical utility, psychosocial responses are poorly understood. METHODS: A descriptive cross-sectional study was conducted to explore associations between Oncotype Dx® test results (Recurrence Score [RS]) and FCR, health-related quality of life (HRQOL), distress, anxiety, depression, illness representation and perceived risk. Bivariate analyses were used to examine the associations between variables followed by multiple linear regression to examine predictors of FCR. RESULTS: Greater FCR was associated with higher distress, anxiety, depression, illness representation and poorer HRQOL. BCS's with a high Oncotype Dx® RS reported higher overall fear (p = 0.013) and greater perceived consequences of their cancer (p = 0.034) compared to BCS's with a low RS. Using multiple linear regression, anxiety ( ß  = 0.21, p = 0.016), greater emotional response (ß  = 0.45, p < 0.001) and perceived consequences ( ß  = 0.18, p = 0.039) of illness explained 58% of the variance (p < 0.001) in FCR. CONCLUSION: BCS's with higher risk of recurrence may experience higher FCR. However, for FCR, modifiable factors such as anxiety and illness representation (greater emotional response and perceived consequences of illness) may be more important than non-modifiable factors such as Oncotype Dx® test results and age. Further research is needed to develop personalized interventions to improve BCS's outcomes.

"I had to fight for my VBAC": A mixed methods exploration of women's experiences of pregnancy and vaginal birth after cesarean in the United States.

BACKGROUND: Vaginal birth after cesarean (VBAC) is safe, cost-effective, and beneficial. Despite professional recommendations supporting VBAC and high success rates, VBAC rates in the United States (US) have remained below 15% since 2002. Very little has been written about access to VBAC in the United States from the perspectives of birthing people. We describe findings from a mixed methods study examining experiences seeking a VBAC in the United States. METHODS: Individuals with a history of cesarean and recent subsequent birth were recruited through social media groups. Using an online questionnaire, we collected sociodemographic and birth history information, qualitative accounts of participants' experiences, and scores on the Mothers on Respect Index, the Mothers Autonomy in Decision Making Scale, and the Generalized Self-Efficacy Scale. RESULTS: Participants (N = 1711) representing all 50 states completed the questionnaire; 1151 provided qualitative data. Participants who planned a VBAC reported significantly greater decision-making autonomy and respectful treatment in their maternity care compared with those who did not. The qualitative theme: "I had to fight for my VBAC" describes participants' accounts of navigating obstacles to VBAC, including finding a supportive provider and traveling long distances to locate a clinician and/or hospital willing to provide care. Participants cited support from providers, doulas, and peers as critical to their ability to acquire the requisite knowledge and power to effectively self-advocate. DISCUSSION: Findings highlight the difficulties individuals face accessing VBAC within the context of a complex health system and help to explain why rates of attempted VBAC remain low.

Diet, physical activity, and health-related outcomes of endometrial cancer survivors in a behavioral lifestyle program: the Diet and Exercise in Uterine Cancer Survivors (DEUS) parallel randomized controlled pilot trial.

OBJECTIVES: To explore the effectiveness of a theory-based behavioral lifestyle intervention on health behaviors and quality of life in endometrial cancer survivors.' METHODS: This was a secondary analysis of a randomized controlled pilot trial conducted in two UK hospitals enrolling disease-free stage I-IVA endometrial cancer survivors. Participants were allocated to an 8-week group-based healthy eating and physical activity intervention or usual care using 1:1 minimization. Participants were followed up at 8 and 24 weeks, with the 8-week assessment being blinded. Diet, physical activity, and quality of life were measured with the Alternative Healthy Eating Index 2010, Stanford 7-Day Physical Activity Recall, and the EORTC Quality of life Questionnaire Core 30, respectively. We analyzed all eligible participants using the intention-to-treat approach in complete cases, adjusting for baseline values, body mass index, and age. RESULTS: We enrolled 60 of the 296 potentially eligible endometrial cancer survivors (May - December 2015). Fifty-four eligible participants were randomized to the intervention (n=29) or usual care (n=31), and 49 had complete follow-up data (n=24 in the intervention and n= 25 in usual care). Intervention adherence was 77%. At 8 weeks, participants in the intervention improved their diet compared to usual care (difference in Alternative Healthy Eating Index 2010 score 7.5 (95% CI: 0.1 to 14.9), P=0.046) but not their physical activity (0.1 metabolic equivalent-h/day 95% CI: (-1.6 to 1.8), P=0.879), or global quality of life score (5.0 (95% CI: -3.4 to 13.3), P=0.236). Global quality of life improved in intervention participants at 24 weeks (difference 8.9 (95% CI: 0.9 to 16.8), P=0.029). No intervention-related adverse events were reported. CONCLUSIONS: The potential effectiveness of the intervention appeared promising. A future fully-powered study is needed to confirm these findings. TRIAL REGISTRATION NUMBER: NCT02433080.

Patient Experiences Navigating Chronic Pain Management in an Integrated Health Care System: A Qualitative Investigation of Women and Men.

Background: Rates of pain among veterans are as high as 60%; rates approach 80% in women seeking Department of Veterans Affairs (VA) care. Prior studies examined experiences managing pain in community samples, with gender disparities observed. As the largest national integrated health care system in the country, the VA offers a unique environment to a) study perceptions of pain care among men and women and b) contrast experiences using an integrated health care setting with prior observations in the private sector. Methods: A purposive sample of chronic pain patients was recruited to qualitatively describe perceptions of managing pain in an integrated health care system (VA) and to explore gender differences. A constant comparative approach with sequential analysis was used to reach thematic consensus. Results: Ten focus groups (N = 48; six groups of women [N = 22]; four groups of men [N = 26]) revealed an overarching theme, "just keep plugging," which reflected pain as a constant struggle. Three subthemes emerged: "always a reacquaintance process" described frustration with the use of trainees in the medical center. The need to navigate "so many hoops" referred to frustrations with logistical barriers. "To medicate or not" reflected tensions around medication use. A distinct theme, "the challenges of being female," reflected women's perceptions of stigma and bias. Conclusions: Most of the identified challenges were not unique to the integrated setting. Findings revealed advantages to receiving pain care in this setting. Tensions between patient expectations and guidelines governing provider behavior emerged. Improved patient education, provider communication and sensitivity to the unique needs of women may optimize care.

Use of intervention mapping to adapt a health behavior change intervention for endometrial cancer survivors: the shape-up following cancer treatment program.

BACKGROUND: About 80% of endometrial cancer survivors (ECS) are overweight or obese and have sedentary behaviors. Lifestyle behavior interventions are promising for improving dietary and physical activity behaviors, but the constructs associated with their effectiveness are often inadequately reported. The aim of this study was to systematically adapt an evidence-based behavior change program to improve healthy lifestyle behaviors in ECS. METHODS: Following a review of the literature, focus groups and interviews were conducted with ECS (n = 16). An intervention mapping protocol was used for the program adaptation, which consisted of six steps: a needs assessment, formulation of matrices of change objectives, selection of theoretical methods and practical applications, program production, adoption and implementation planning, and evaluation planning. Social Cognitive Theory and Control Theory guided the adaptation of the intervention. RESULTS: The process consisted of eight 90-min group sessions focusing on shaping outcome expectations, knowledge, self-efficacy, and goals about healthy eating and physical activity. The adapted performance objectives included establishment of regular eating, balanced diet, and portion sizes, reduction in sedentary behaviors, increase in lifestyle and organized activities, formulation of a discrepancy-reducing feedback loop for all above behaviors, and trigger management. Information on managing fatigue and bowel issues unique to ECS were added. CONCLUSIONS: Systematic intervention mapping provided a framework to design a cancer survivor-centered lifestyle intervention. ECS welcomed the intervention and provided essential feedback for its adaptation. The program has been evaluated through a randomized controlled trial.

"I Think It's Pretty Much the Same, as It Should Be": Perspectives of Inpatient Care Among Women Veterans.

The purpose of this study was to gain a deeper understanding of the inpatient hospitalization experience for women veterans through in-depth interviews. Women veterans who were admitted for inpatient care on medical units within a university-affiliated VA hospital were invited to participate in a semistructured interview that inquired about their hospital experience, interactions with medical providers, and how being a woman veteran might affect this experience. Interviews were transcribed verbatim and analyzed using constant comparative method until thematic saturation was achieved ( n = 25). Three themes, (a) Being a woman and a veteran: Intersecting identities, (b) Expecting equality and equity, and (c) Defining woman-centered inpatient care described the unique perspective and context for Veterans Health Administration (VHA) health care of women veterans. These findings provide insight and guidance to clinical practice and care delivery for women veterans, including training and interpersonal approaches medical providers can take to improve the hospital experience for women.

"Being connected" The experience of African American women with breast cancer: A community-based participatory research project: Part I.

The objective was to understand the breast cancer experience of African American (AA) women using a community-based participatory research framework. Qualitative data were collected from five focus groups with 29 participants in four urban cities. "Being Connected" was the major theme that explained the importance of people in their lives as they coped with the diagnosis, treatment, and life after therapy. Faith, talking, information, support, and living with changes were important factors in the process. The breast cancer experience was situated with the AA culture and community and unique aspects were identified for clinical practice in the care of these women.

Healthy Sisters: A Feasibility study of a health behavior intervention for women of color breast cancer survivors.

There is strong evidence for the need to educate and empower women of color breast cancer survivors (WCBCS) to adopt healthy lifestyle behaviors. The purpose of this study was to explore feasibility and preliminary efficacy of a culturally grounded lifestyle intervention on functional ability, quality of life, and health behaviors. A community-based sample of WCBCS was recruited from two inner cities, with encouragement to invite a partner. There were 30 WCBCS and 10 partners who participated in the 6-week interactive intervention. Data were collected at baseline, end of intervention and 3 and 6 months. There was significant improvement in healthy lifestyle behaviors (p = 0.041), physical activity (p = 0.003), nutrition (p = 0.007), and stress management (p = 0.010) for WCBCS and, for partners, improvements in healthy lifestyle behaviors (p = 0.041), nutrition (p = 0.007), and health responsibility (p = 0.034).

Physical and psychological effects of Qigong exercise in community-dwelling older adults: An exploratory study.

Older adults need exercise programs that correspond to age-related changes. The purpose of this study was to explore preliminary effects of an 8-week Qigong exercise intervention on the physical ability, functional and psychological health, and spiritual well-being of community-dwelling older adults. Forty-five community-dwelling adults with the mean age of 74.8 years participated a 1-h Health Qigong exercise session twice weekly for 8 weeks. The majority were female (84%) and white (91%), and lived with their spouse (49%). Physical ability (p < 0.001), functional health (p = 0.001), balance (p < 0.001), functional reach (p < 0.001), depression (p = 0.005), and spiritual well-being (p = 0.004) improved significantly after the 8-week intervention. Most participants perceived physical ability, mental health, and spiritual well-being benefits. No adverse events were reported. A twice weekly Qigong exercise program over 8 weeks is feasible and has potential to improve physical ability, functional health, balance, psychological health, and spiritual well-being in older adults.

Effect of a randomized controlled exercise trial on bone outcomes: influence of adjuvant endocrine therapy.

Bone loss is a significant clinical problem for female cancer survivors (FCS) and increases fracture risk. The aim of the Yale Fitness Intervention Trial (Yale FIT) was to determine the effects of a 12-month aerobic-resistance exercise intervention compared to a home-based physical activity group on bone outcomes [bone mineral density (BMD)] and biomarkers bone turnover). Early postmenopausal FCS (N = 154) were randomized to the exercise intervention (3 times/week) or to a home-based physical activity group. Calcium (1200 mg) and Vitamin D (400 IU) supplements were provided to both groups. BMD was measured at baseline and 12 months. No significant difference in BMD was observed for the exercise vs home-based group. However, subjects on Tamoxifen or no endocrine therapy did not significantly lose BMD, with the exception of the femoral neck (FN). In contrast subjects on aromatase inhibitors (AIs) had significant BMD loss at all sites. The majority of subjects had sufficient serum levels of Vitamin D (>20 ng/mL) but there was significantly less bone loss in subjects in the 20-29 ng/mL range at the LS (p = 0.01), hip (p = 0.03), and GT (p = 0.008) compared to lower or higher levels. Exercise stimulates bone remodeling but the intervention was not superior for BMD outcomes at one year. The dose of the osteogenic stimulus in the intervention has been effective in preserving BMD in healthy postmenopausal women but it may be inadequate for survivors with chemotherapy-induced menopause and for those on adjuvant AI therapy.

Family involvement for breast cancer decision making among Chinese-American women.

BACKGROUND: To describe family involvement in decision making for primary treatment in Chinese-American women with early-stage breast cancer. METHODS: Qualitative data were collected in 2003 from semi-structured questions in interviews with a sample of Chinese-American (ChA) women with breast cancer, who were recruited from the metropolitan New York area. Responses to the questions were written in Chinese immediately during the interview and read back to the subject for accuracy and validation. Content analysis was used to inductively code and analyze the data to generate themes. RESULTS: The participants consisted of 123 ChA women with early stage breast cancer with a mean age of 48.7 years (±9.3) and who had lived in the United States a median of 13.6 years. Support and Caring was the major theme that described family involvement in the breast cancer decision-making process. Gathering Information, Being There, Navigating the Health Care System, Maintaining Family Life and Making the Decision described the aspects of family support in the process. The majority of women described the treatment decision making as a collaborative supportive process with the family, but limited English fluency, strong opinions, lack of a shared perspective, distant living proximity and competing work responsibilities of family members were stressful for the women and perceived as non-supportive. CONCLUSIONS: Family involvement in health care decision making is culturally embedded in Asian populations. Culturally sensitive patient and family consultation strategies are needed to assist informed treatment decision making in Chinese-American women diagnosed with breast cancer. Copyright © 2015 John Wiley & Sons, Ltd.

Treatment complexity: a description of chemotherapy and supportive care treatment visits in patients with advanced-stage cancer diagnoses.

PURPOSE: Modern chemotherapy regimens are growing increasingly complex, involving lengthy outpatient infusions, and additional visits for supportive care. The treatment of advanced-stage patients is uniquely one of unremitting therapy and varying complexity. The study's purpose was to describe and quantify the dimensions of treatment complexity in terms of chemotherapy (CT) and supportive care (SC) visits. METHODS: Electronic medical records for 121 subjects with stages III and IV cancer were reviewed. Visits were classified as SC and CT types, and actual hours and visit numbers were calculated for a 3-month treatment period. Analysis included descriptive and generalized linear modeling statistics. RESULTS: Subjects ≥65 years spent fewer total hours (M = 18.17 h, SD = 10.17 h, p = 0.04), but experienced more total visits (M = 10.96 visits, SD = 4.65 visits, p = 0.02) than younger subjects. More than 71% of younger patients spent two or more hours per chemotherapy visit, compared to 41.7% of older patients (p = 0.001). Older subjects were more likely to have a SC visit (p = 0.03), but did not differ from younger subjects in SC visit numbers (p = 0.3) or hours (p = 0.6). Females averaged 3.81 more total hours (M = 22. 61 h, SD = 11.06 h, p = 0.055) and had more total visits (M = 10.80 visits, SD = 3.71, p = 0.02) than males. By visit type, women spent twice the hours undergoing SC than males (M = 3.3 vs. 1.5 h, p = 0.051), but genders did not differ in CT visit hours or average length. By diagnosis, colon/esophageal subjects spent more hours in CT visits (M = 21.90 h, SD = 8.60 h, p < 0.01), and lung subjects trended toward spending more hours in SC visits (M = 4.80 h, SD = 8.23 h, p < 0.06). CONCLUSIONS: Advanced-stage cancer patients differed in visit types, hours, and treatment length undergoing CT and SC visits. Age, gender, and diagnosis explained the differences, and this study adds new understanding to the phenomenon of treatment complexity.

"An addendum to breast cancer": the triple negative experience.

PURPOSE: The triple negative breast cancer (TNBC) subtype, known to be aggressive with high recurrence and mortality rates, disproportionately affects African-Americans, young women, and BRCA1 carriers. TNBC does not respond to hormonal or biologic agents, limiting treatment options. The unique characteristics of the disease and the populations disproportionately affected indicate a need to examine the responses of this group. No known studies describe the psychosocial experiences of women with TNBC. The purpose of this study is to begin to fill that gap and to explore participants' psychosocial needs. METHOD: An interpretive descriptive qualitative approach was used with in-depth interviews. A purposive sample of adult women with TNBC was recruited. Dominant themes were extracted through iterative and constant comparative analysis. RESULTS: Of the 22 participants, nearly half were women of color, and the majority was under the age of 60 years and within 5 years of diagnosis. The central theme was a perception of TNBC as "an addendum" to breast cancer. There were four subthemes: TNBC is Different: "Bottom line, it's not good"; Feeling Insecure: "Flying without a net"; Decision-Making and Understanding: "A steep learning curve"; and Looking Back: "Coulda, shoulda, woulda." Participants expressed a need for support in managing intense uncertainty with a TNBC diagnosis and in decision-making. CONCLUSIONS: Women with all subtypes of breast cancer have typically been studied together. This is the first study on the psychosocial needs specifically of women with TNBC. The findings suggest that women with TNBC may have unique experiences and unmet psychosocial needs.

Primary Breast Cancer Decision-making Among Chinese American Women: Satisfaction, Regret.

BACKGROUND: Decision-making for cancer treatment is a complex, informational process. Lower satisfaction, higher decision regret, and poorer quality of life are potential adverse outcomes. OBJECTIVES: The aim of the study was to describe breast cancer treatment decision outcomes and examine factors associated with decision outcomes of satisfaction and regret in Chinese American women. METHODS: A cross-sectional, correlational design was used. A sample of 123 self-identified Chinese American women with early-stage breast cancer was recruited from the greater New York metropolitan area. The Breast Cancer Decision-Making Questionnaire, Decisional Conflict Scale, and Decisional Regret Scale--that were written in Chinese with equivalence from back-translation--were used to measure the factors in the decision-making process and the decisional outcome. Multiple, linear regression was used to identify predictors for decisional outcomes. RESULTS: The mean age of the subjects was 48.7 years (SD = 9.3 years), the majority of whom were married (80%) and not working (63%), and about half spoke Cantonese or Mandarin as their daily language. The women reported a low to moderate level of decisional conflict, postdecisional dissatisfaction, and regret with their decision. However, the women who had greater decisional conflict, who had more difficulty in communicating with their physician, who had limited English fluency, and who were financially dependent and less involved in decision-making had lower satisfaction and more regret with their treatment decision. DISCUSSION: Limited English fluency among Chinese American women negatively affected communication during the physician consultation about breast cancer treatment options, and financial barriers were also associated with lower postdecisional satisfaction and higher regret. Culturally sensitive decision support interventions are needed for Asian American women to make an informed, satisfied breast cancer treatment decision.

Getting used to being a patient: the postoperative experience of living liver transplant donors.

CONTEXT: Living donor liver transplant is a viable option for eligible persons in need of a liver transplant, but little is known about the hospitalization experience of patients undergoing hepatectomy for transplant donation. OBJECTIVE: To explore the hospital experience of patients recovering from donor hepatectomy. DESIGN: A qualitative interpretive descriptive design was used to understand the hospital experience of patients recovering from donor hepatectomy. Semistructured interviews, conducted before discharge, were audiotaped and transcribed verbatim. Coding was performed independently, then jointly by investigators to reach consensus on emerging themes. Setting-Major university hospital in the Northeastern United States. Sample-Adults (>18 years of age) whose primary language was English or Spanish and who could provide written informed consent. RESULTS: The sample consisted of 15 participants who had a mean age of 34.6 years; half were women. Most were white and college educated. The relationship of the donors to recipients varied from immediate family to altruistic donors. "Getting used to being a patient" was the major theme that captured the patients' postoperative experience. Four subthemes explained the experience: regaining consciousness, all those tubes, expecting horrible pain, and feeling special and cared for. These were described in the context of an "amazing and impressive" transplant team. CONCLUSION: As healthy donors are getting used to being patients, these results provide clinicians with a deeper understanding of the transplant experience from the donor's perspective so that care can be tailored to meet their unique needs.

Promoting quality breast cancer care: psychosocial distress screening.

OBJECTIVE: To evaluate the feasibility of implementing psychosocial distress screening in a breast center of a comprehensive cancer center, using a model of structure (personnel, resources), process (screening), and outcome (number of patients screened, number referred). METHODS: The first step in the project was to establish administrative support, educate and engage breast center staff, identify stakeholders and persons with expertise in the conduct of evidence based initiatives. A two-phase implementation approach was agreed upon with Phase I being screening of new patients in surgical oncology and Phase II being screening women in medical oncology. RESULTS: A total of 173 patients were screened. The new patients screened in surgical oncology reported higher average distress scores compared to patients in medical oncology (5.7 vs. 4.0). However, a greater number of patients in medical oncology reported scores >4 compared to the new patients screened in surgery (54% vs. 35%). Psychological distress was the most commonly reported distress for patients in surgery. In contrast, 60% of scores >4 in medical oncology were symptom related, managed by the nurse or physician. SIGNIFICANCE OF RESULTS: Nurse led implementation of psychosocial distress screening is feasible, addressing this important quality indicator of patient-centered care.

Perspectives of Patients With Relapsed and Refractory Acute Myeloid Leukemia and High-Risk Myelodysplastic Syndrome on Patient-Clinician Communication About Prognosis and the Future.

Background: Patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndrome (MDS) experience unpredictable disease trajectories and high prognostic uncertainty, which serve as barriers to patient-clinician communication about prognosis and their values and preferences for the future in the event of worsening health. Little is known about patients' day-to-day lived experiences and how this shapes their willingness to engage in such conversations. Objectives: To explore participant perspectives on living with their illness and patient-clinician communication about prognosis and the future. Design: This is a qualitative study using semi-structured interviews. Setting/Subjects: Patients with relapsed and refractory (R/R) AML and high-risk MDS from a northeastern U.S. cancer center. Data Collection: Interviews were transcribed verbatim and thematic analysis was used to generate findings. Results: Of the 14 participants, the mean age was 66 years, 79% were men, 93% were White, married, and had AML. The overarching theme that describes the experience was "Taking One Day at a Time" in a Fog of Uncertainty. Uncertainty was a universal perception related to the challenges for clinicians to predict prognosis. To cope with uncertainty, most participants tried to focus on the present and maintain normality in everyday life. Participants valued encouragement and positivity in patient-clinician communication, however, the majority were not ready to discuss prognosis and the future in the event of worsening health. Of note, 7 of 14 participants died within three months after the interview. Conclusions: These data describe a unique perspective of patients with R/R AML and high-risk MDS that clinicians could use to enhance communication strategies.