Pediatric lymphoma patients in Malawi present with poor health-related quality of life at diagnosis and improve throughout treatment and follow-up across all Pediatric PROMIS-25 domains.

BACKGROUND: Patient-reportedoutcomes (PROs) that assess health-related quality of life (HRQoL) are increasingly important components of cancer care and research that are infrequently used in sub-Saharan Africa (SSA). METHODS: We administered the Chichewa Pediatric Patient-Reported Outcome Measurement Information System Pediatric (PROMIS)-25 at diagnosis, active treatment, and follow-up among pediatric lymphoma patients in Lilongwe, Malawi. Mean scores were calculated for the six PROMIS-25 HRQoL domains (Mobility, Anxiety, Depressive Symptoms, Fatigue, Peer Relationships, Pain Interference). Differences in HRQoL throughout treatment were compared using the minimally important difference (MID) and an ANOVA analysis. Kaplan-Meier survival estimates and Cox hazard ratios for mortality are reported. RESULTS: Seventy-five children completed PROMIS-25 surveys at diagnosis, 35 (47%) during active treatment, and 24 (32%) at follow-up. The majority of patients died (n = 37, 49%) or were lost to follow-up (n = 6, 8%). Most (n = 51, 68%) were male, median age was 10 (interquartile range [IQR] 8-12), 48/73 (66%) presented with advanced stage III/IV, 61 (81%) were diagnosed with Burkitt lymphoma and 14 (19%) Hodgkin lymphoma. At diagnosis, HRQoL was poor across all domains, except for Peer Relationships. Improvements in HRQoL during active treatment and follow-up exceeded the MID. On exploratory analysis, fair-poor PROMIS Mobility <40 and severe Pain Intensity = 10 at diagnosis were associated with increased mortality risk and worse survival, but were not statistically significant. CONCLUSIONS: Pediatric lymphoma patients in Malawi present with poor HRQoL that improves throughout treatment and survivorship. Baseline PROMIS scores may provide important prognostic information. PROs offer an opportunity to include patient voices and prioritize holistic patient-centered care in low-resource settings.

Feasibility and delivery of patient-reported outcomes in clinical practice among racially diverse bladder and prostate cancer patients.

OBJECTIVE: To assess the feasibility of enrollment and collecting patient-reported outcome (PRO) data as part of routine clinical urologic care for bladder and prostate cancer patients and examine overall patterns and racial variations in PRO use and symptom reports over time. SUBJECTS/PATIENTS AND METHODS: We recruited 76 patients (n = 29 Black and n = 47 White) with prostate or bladder cancer at a single, comprehensive cancer center. The majority of prostate cancer patients had intermediate risk (57%) disease and underwent either radiation or prostatectomy. Over half (58%) of bladder cancer patients had muscle invasive disease and underwent cystectomy. Patients were asked to complete PRO symptom surveys using their preferred mode [web- or phone-based interactive voice response (IVR)]. Symptom summary reports were shared with providers during visits. Surveys were completed at 3 time points and assessed urinary, sexual, gastrointestinal, anxiety/depression, and sleep symptoms. Feasibility of enrollment and survey completion were calculated, and linear mixed effects models estimated differences in outcomes by race and time. RESULTS: Sixty three percent of study participants completed all PRO measures at all 3 time points. Black patients were more likely to select IVR as their survey mode (40% vs. 13%, P < 0.05), and less likely to complete all surveys (55% vs. 74%, P = 0.13). Patients using IVR were also less likely to complete all surveys (41% vs. 69%, P = 0.046). CONCLUSIONS: Reported preferences for survey mode and completion rates differ by race, which may influence survey completion rates and highlight potential obstacles for equitable implementation of PROs into clinical care.

Older Adults with Cancer: A Randomized Controlled Trial of Occupational and Physical Therapy.

OBJECTIVES: The impact of occupational therapy (OT) and physical therapy (PT) on functional outcomes in older adults with cancer is unknown. DESIGN: Two-arm single-institution randomized controlled trial of outpatient OT/PT. SETTING: Comprehensive cancer center with two off-site OT/PT clinics. PARTICIPANTS: We recruited adults 65 years and older with a recent diagnosis or recurrence of cancer within 5 years, with at least one functional limitation as identified by a geriatric assessment. Participants were randomized to OT/PT or usual care. INTERVENTION: Rehabilitation consisted of individualized OT and PT that addressed functional activities and strength/endurance needs. MEASUREMENTS: Primary outcome was functional status as measured by the Nottingham Extended Activities of Daily Living scale. Secondary outcomes were Patient-Reported Outcomes Measurement Information System-Global Mental Health (GMH) and Global Physical Health (GPH), ability to participate in Social Roles (SR), physical function, and activity expectations and self-efficacy (Possibilities for Activity Scale [PActS]). RESULTS: Among those recruited (N = 63), only 45 patients (71%) were evaluable due to loss of follow-up and/or nonreceipt of intervention. The median age was 74 years; 53% were female, and 91% were white. Overall, 30% patients had hematologic malignancies, 30% breast cancer, and 16% colorectal cancers. A total of 65% were in active treatment; 49% had stage 3 or 4 disease. At follow-up, both OT/PT (P = .02) and usual care (P = .03) groups experienced a decline in functional status. PActS scores between groups (P = .04) was significantly improved in the intervention group. GMH and SR met criteria for minimally important clinical difference favoring the intervention, but not statistical significance. Several barriers were noted in the implementation of the intervention program: recruitment, concerns about cost, distance, scheduling, and limited treatment provided. CONCLUSION: OT/PT may positively influence activity expectations and self-efficacy. Future research needs to address significant barriers to implementation to increase use of OT/PT services and access to quality care. J Am Geriatr Soc 67:953-960, 2019.

Symptoms, Mobility and Function, and Quality of Life in Adults With Acute Leukemia During Initial Hospitalization.

OBJECTIVES: To examine longitudinal symptoms, mobility and function, and quality of life (QOL) in adults newly diagnosed with acute leukemia. SAMPLE & SETTING: 55 adults undergoing induction chemotherapy at the University of North Carolina Lineberger Comprehensive Cancer Center and the Duke Cancer Institute. METHODS & VARIABLES: A prospective, longitudinal study with measures of mobility and function, global physical and mental health, cancer-related fatigue, anxiety, depression, sleep disturbance, pain intensity, and leukemia-specific QOL was conducted. Data were analyzed using descriptive statistics, linear mixed modeling, and one-way analysis of variance. RESULTS: 49 adults with acute leukemia completed assessments during hospitalizations. Global mental health and pain intensity did not change significantly. Global physical health significantly improved. Fatigue, anxiety, depression, and sleep disturbance decreased significantly. QOL increased significantly. IMPLICATIONS FOR NURSING: The significant decrease in anxiety and fatigue during hospitalization may be attributable to understanding of the disease process, familiarity with the staff, and ability to communicate concerns.

The Effects of Exercise on Patient-Reported Outcomes and Performance-Based Physical Function in Adults With Acute Leukemia Undergoing Induction Therapy: Exercise and Quality of Life in Acute Leukemia (EQUAL).

INTRODUCTION: Fatigue is a distressing symptom for adults with acute leukemia, often impeding their ability to exercise. OBJECTIVES: 1) Examine effects of a 4-week mixed-modality supervised exercise program (4 times a week, twice a day) on fatigue in adults with acute leukemia undergoing induction chemotherapy. 2) Evaluate effects of exercise program on cognition, anxiety, depression, and sleep disturbance. 3) Evaluate effect of intervention on adherence to exercise. METHODS: 17 adults (8 intervention, 9 control), aged 28-69 years, newly diagnosed with acute leukemia were recruited within 4 days of admission for induction treatment. Patient-reported outcomes (PROs) (fatigue, cognition, anxiety, depression, sleep disturbance, mental health, and physical health) and fitness performance-based measures (Timed Up and Go [TUG], Karnofsky Performance Status, and composite strength scoring) were assessed at baseline and at discharge. Changes in PRO and performance-based physical function measures from baseline to time of discharge were compared between groups using Wilcoxon Rank Sum tests. RESULTS: With PROMIS (Patient-Reported Outcomes Measurement Information System) Fatigue, we found a median change in fatigue (-5.95) for the intervention group, which achieved a minimally important difference that is considered clinically relevant. Intervention group reduced their TUG performance by 1.73 seconds, whereas the control group remained fairly stable. A concerning finding was that cognition decreased for both groups during their hospitalization. 80% adherence of visits completed with a mean of 6 sessions attended per week. CONCLUSIONS: Our study provides information on the impact of exercise on symptomatology, with focus on fatigue and other psychosocial variables in acute leukemia.

Feasibility of Patient Reporting of Symptomatic Adverse Events via the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) in a Chemoradiotherapy Cooperative Group Multicenter Clinical Trial.

PURPOSE: To assess the feasibility of measuring symptomatic adverse events (AEs) in a multicenter clinical trial using the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). METHODS AND MATERIALS: Patients enrolled in NRG Oncology's RTOG 1012 (Prophylactic Manuka Honey for Reduction of Chemoradiation Induced Esophagitis-Related Pain during Treatment of Lung Cancer) were asked to self-report 53 PRO-CTCAE items representing 30 symptomatic AEs at 6 time points (baseline; weekly ×4 during treatment; 12 weeks after treatment). Reporting was conducted via wireless tablet computers in clinic waiting areas. Compliance was defined as the proportion of visits when an expected PRO-CTCAE assessment was completed. RESULTS: Among 226 study sites participating in RTOG 1012, 100% completed 35-minute PRO-CTCAE training for clinical research associates (CRAs); 80 sites enrolled patients, of which 34 (43%) required tablet computers to be provided. All 152 patients in RTOG 1012 agreed to self-report using the PRO-CTCAE (median age 66 years; 47% female; 84% white). Median time for CRAs to learn the system was 60 minutes (range, 30-240 minutes), and median time for CRAs to teach a patient to self-report was 10 minutes (range, 2-60 minutes). Compliance was high, particularly during active treatment, when patients self-reported at 86% of expected time points, although compliance was lower after treatment (72%). Common reasons for noncompliance were institutional errors, such as forgetting to provide computers to participants; patients missing clinic visits; Internet connectivity; and patients feeling "too sick." CONCLUSIONS: Most patients enrolled in a multicenter chemoradiotherapy trial were willing and able to self-report symptomatic AEs at visits using tablet computers. Minimal effort was required by local site staff to support this system. The observed causes of missing data may be obviated by allowing patients to self-report electronically between visits, and by using central compliance monitoring. These approaches are being incorporated into ongoing studies.

Patient-reported symptoms and quality of life in adults with acute leukemia: a systematic review.

PURPOSE/OBJECTIVES: Systematically summarize findings from research conducted on adult acute leukemia survivors as they relate to symptoms and quality of life (QOL). 
 DATA SOURCES: Systematic review of the literature from 1990­2013 found in the PubMed, PsycINFO®, EMBASE, and CINAHL® databases, as well as manual searches. 
 DATA SYNTHESIS: The review identified 16 quantitative studies and 1 qualitative study published from 1990­2013 that used a self-reported QOL or symptom questionnaire. Fatigue was the most commonly assessed and reported symptom, followed by depression. 
 CONCLUSIONS: Acute leukemia and its treatment have a significant impact in all QOL domains. Future studies should include longitudinal research, more than one recruitment site, increased minority representation, and home-based exercise interventions as ways to improve all domains of QOL. 
 IMPLICATIONS FOR NURSING: This review increases awareness of commonly reported symptoms faced by adults with acute leukemia. Oncology nurses are central in monitoring and reporting symptoms to the interdisciplinary team that may contribute to changes in function, with the overall goal of optimizing QOL over time. 


"Not the 'grim reaper service'": an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure.

BACKGROUND: Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. METHODS AND RESULTS: We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF-related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. CONCLUSIONS: Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease-related burden.

Examining potential colorectal cancer care disparities in the Veterans Affairs health care system.

PURPOSE: Racial disparities in cancer treatment and outcomes are a national problem. The nationwide Veterans Affairs (VA) health system seeks to provide equal access to quality care. However, the relationship between race and care quality for veterans with colorectal cancer (CRC) treated within the VA is poorly understood. We examined the association between race and receipt of National Comprehensive Cancer Network guideline-concordant CRC care. PATIENTS AND METHODS: This was an observational, retrospective medical record abstraction of patients with CRC treated in the VA. Two thousand twenty-two patients (white, n = 1,712; African American, n = 310) diagnosed with incident CRC between October 1, 2003, and March 31, 2006, from 128 VA medical centers, were included. We used multivariable logistic regression to examine associations between race and receipt of guideline-concordant care (computed tomography scan, preoperative carcinoembryonic antigen, clear surgical margins, medical oncology referral for stages II and III, fluorouracil-based adjuvant chemotherapy for stage III, and surveillance colonoscopy for stages I to III). Explanatory variables included demographic and disease characteristics. RESULTS: There were no significant racial differences for receipt of guideline-concordant CRC care. Older age at diagnosis was associated with reduced odds of medical oncology referral and surveillance colonoscopy. Presence of cardiovascular comorbid conditions was associated with reduced odds of medical oncology referral (odds ratio, 0.65; 95% CI, 0.50 to 0.89). CONCLUSION: In these data, we observed no evidence of racial disparities in CRC care quality. Future studies could examine causal pathways for the VA's equal, quality care and ways to translate the VA's success into other hospital systems.

Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or risk.

OBJECTIVE: We introduce The Psychological Adaptation Scale (PAS) for assessing adaptation to a chronic condition or risk and present validity data from six studies of genetic conditions. METHODS: Informed by theory, we identified four domains of adaptation: effective coping, self-esteem, social integration, and spiritual/existential meaning. Items were selected from the PROMIS "positive illness impact" item bank and adapted from the Rosenberg self-esteem scale to create a 20-item scale. Each domain included five items, with four sub-scale scores. Data from studies of six populations: adults affected with or at risk for genetic conditions (N=3) and caregivers of children with genetic conditions (N=3) were analyzed using confirmatory factor analyses (CFA). RESULTS: CFA suggested that all but five posited items converge on the domains as designed. Invariance of the PAS amongst the studies further suggested it is a valid and reliable tool to facilitate comparisons of adaptation across conditions. CONCLUSION: Use of the PAS will standardize assessments of adaptation and foster understanding of the relationships among related health outcomes, such as quality of life and psychological well-being. PRACTICE IMPLICATIONS: Clinical interventions can be designed based on PAS data to enhance dimensions of psychological adaptation to a chronic health condition or risk.

An examination of racial differences in process and outcome of colorectal cancer care quality among users of the veterans affairs health care system.

BACKGROUND: Veterans Affairs (VA) manages the largest US integrated health care system. Although quality of VA colorectal cancer (CRC) care is well chronicled, there is a paucity of research examining racial differences in this care. This study examines racial differences in 2 dimensions of quality of VA CRC care: processes (time to treatment) and outcomes (survival). PATIENTS AND METHODS: Retrospective data were from the VA External Peer Review Program (EPRP), a nationwide VA quality-monitoring program. Study patients were white and African American men diagnosed with nonmetastatic CRC between 2003 and 2006 who received definitive CRC surgery. We examined 3 quality indicators: time from (1) surgery to initiation of adjuvant chemotherapy (stages II-III disease), (2) surgery to surveillance colonoscopy (stages I-III disease), and (3) surgery to death (stages I-III disease). Unadjusted analyses used log-rank and Wilcoxon tests. Adjusted analyses used Cox proportional hazard models. RESULTS: In unadjusted analyses, there was no evidence of racial differences across the 3 quality measures. In adjusted Cox regression, there were no racial differences in time to initiation of chemotherapy (hazard ratio [HR], 0.82; P = .61) or surgery to death (HR, 0.94; P = .49). In adjusted Cox regression, among those receiving colonoscopy within 7 to 18 months after surgery, white patients experienced slightly shorter median times to surveillance colonoscopy than did African American patients (367 vs. 383 days; HR, 0.63; P = .02). CONCLUSION: Other than a small racial difference in timing of surveillance colonoscopy, there was little evidence of racial differences in quality of CRC care among VA health care system users.