"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.

Piloting HealthScore: Feasibility and acceptability of a clinically integrated health coaching program for people living with cancer.

BACKGROUND: Cancer supportive care interventions often have limited generalizability, goal misalignment, and high costs. We developed and piloted a health coaching intervention, UNC HealthScore, in patients undergoing cancer treatment (ClinicalTrials.gov identifier NCT04923997). We present feasibility, acceptability, and preliminary outcome data. METHODS: HealthScore is a six-month, theory-based, multicomponent intervention delivered through participant-driven coaching sessions. For the pilot study, participants were provided a Fitbit, responded to weekly symptom and physical function digital surveys, and met with a health coach weekly to develop and monitor goals. Coaching notes were discussed in weekly interdisciplinary team meetings and provided back to the treating oncology team. Symptom alerts were monitored and triaged through a study resource nurse to relevant supportive care services. Feasibility was determined based on intervention enrollment and completion. Acceptability was based on satisfaction with coaching and Fitbit-wearing and was informed by semistructured exit interviews. Outcomes evaluated for signs of improvement included several PROMIS (Patient-Reported Outcomes Measurement Information System) measures, including the primary intervention target, physical function. RESULTS: From May 2020 to March 2022, 50 participants completed the single-arm pilot. Feasibility was high: 66% enrolled and 71% completed the full intervention. Participants reported an average of 4.8 and 4.7 (out of 5) on the acceptability of coaching calls and using the Fitbit, respectively. Physical function scores rose 3.1 points (SE = 1.1) from baseline to 3 months, and 4.3 (SE = 1.0) from baseline to 6 months, above established minimal clinically important difference (MCID). Improvements above MCID were also evident in anxiety and depression, and smaller improvements were demonstrated for emotional support, social isolation, cognitive function, symptom burden, and self-efficacy. DISCUSSION: HealthScore shows feasibility, acceptability, and promising preliminary outcomes. Randomized studies are underway to determine the efficacy of preserving physical function in patients with advanced cancer.

Perspectives on Palliative Care in Cancer Clinical Trials: Diverse Meanings from Multidisciplinary Cancer Care Providers.

BACKGROUND: Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials. OBJECTIVE: We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital. METHODS: We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term "palliative care," as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes. RESULTS: Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery. CONCLUSION: There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.

Cancer survivors' disclosure of complementary health approaches to physicians: the role of patient-centered communication.

BACKGROUND: Cancer survivors' disclosure of complementary health approaches (CHAs) to their follow-up care physicians is necessary to ensure the safe and optimal use of such approaches. Rates of disclosure of CHAs are variable and may be facilitated by patient-centered communication. METHODS: This cross-sectional study conducted in 2003-2004 examined a population-based sample of leukemia, colorectal, and bladder cancer survivors (n=623) who were 2 to 5 years after their diagnosis. A subset of participants who reported using CHAs (n=196) was analyzed with multivariate logistic regression to examine the association between patients' perceptions of their physician's patient-centered communication (ie, information exchange, affective behavior, knowledge of patients as persons) and patients' disclosure of CHA use to their physician with adjustments for physician, patient, and patient-physician relationship factors. RESULTS: Thirty-one percent of the full sample used CHAs, and 47.6% of CHA users disclosed their use to their physicians. Disclosure was significantly associated with patient-centered communication even with adjustments for hypothesized covariates (odds ratio [OR], 1.37; 95% confidence interval [CI], 1.09-1.71). Perceived physician knowledge of the patient as a person (OR, 1.28; 95% CI, 1.10-1.48) and information exchange (OR, 1.27; 95% CI, 1.02-1.60) were the aspects of patient-centered communication that contributed to this association. The main reason for nondisclosure assessed in the survey was that survivors did not think that it was important to discuss CHAs (67.0%). A majority of physicians encouraged continued use of CHAs when they were disclosed (64.8%). CONCLUSIONS: Results support the idea that improving the overall patient centeredness of cancer follow-up care and improving the disclosure of CHA use are potentially synergistic clinical goals.

Characteristics associated with the use of complementary health approaches among long-term cancer survivors.

PURPOSE: This study aims to identify the prevalence and characteristics of long-term adult cancer survivors who use complementary health approaches (CHA). METHODS: Participants completed the Follow-up Care Use Among Survivors (FOCUS) Survey, a cross-sectional investigation of long-term cancer survivors. The use of CHA and reasons for use were assessed. A multivariable logistic regression model was applied to identify if predisposing, enabling, and need characteristics described in the Complementary and Alternative Medicine Healthcare Model were associated with CHA use in the past year. RESULTS: Long-term cancer survivors in the study (N = 1,666) were predominately female (62%) and older (mean age = 69.5), with breast, prostate, colorectal, ovarian, and endometrial cancers. Thirty-three percent of survivors used CHA in the past year. Common reasons for CHA use were to relieve stress (28%), treat or prevent cancer (21%), relieve cancer-related symptoms (18%), and deal with another condition (18%). Predisposing (i.e., higher optimism) and need factors (i.e., experienced cancer-related symptoms, ever had depression/anxiety) were significantly associated with CHA (p-values < .05). Enabling factors (i.e., insurance coverage, financial resources) were not. CONCLUSIONS: Cancer survivors continue to report a high prevalence of recent CHA use more than 5 years after initial diagnosis. Healthcare providers should be aware of increased use of CHA among subgroups of long-term cancer survivors in order to guide safe and optimal use.

Changes among US Cancer Survivors: Comparing Demographic, Diagnostic, and Health Care Findings from the 1992 and 2010 National Health Interview Surveys.

Background. Differences in healthcare and cancer treatment for cancer survivors in the United States (US) have not been routinely examined in nationally representative samples or studied before and after important Institute of Medicine (IOM) recommendations calling for higher quality care provision and attention to comprehensive cancer care for cancer survivors. Methods. To assess differences between survivor characteristics in 1992 and 2010, we conducted descriptive analyses of 1992 and 2010 National Health Interview Survey (NHIS) data. Our study sample consisted of 1018 self-reported cancer survivors from the 1992 NHIS and 1718 self-reported cancer survivors from the 2010 NHIS who completed the Cancer Control (CCS) and Cancer Epidemiology (CES) Supplements. Results. The prevalence of reported survivors increased from 1992 to 2010 (4.2% versus 6.3%). From 1992 to 2010, there was an increase in long-term cancer survivors and a drop in multiple malignancies, and surgery remained the most widely used treatment. Significantly fewer survivors (<10 years after diagnosis) were denied insurance coverage. Survivors continue to report low participation in counseling or support groups. Conclusions. As the prevalence of cancer survivors continues to grow, monitoring differences in survivor characteristics can be useful in evaluating the effects of policy recommendations and the quality of clinical care.