Balanced framing in prognostic discussions among patients with advanced cancer.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 22-22
Author(s):  
Amy W. An ◽  
Colin McHugh ◽  
Lauren Elizabeth Nicholls ◽  
Ronald M. Epstein ◽  
Mohamedtaki Abdulaziz Tejani
Keyword(s):  
Life Expectancy ◽  
Advanced Cancer ◽  
Treatment Options ◽  
Group Discussion ◽  
Secondary Analysis ◽  
Patient Specific ◽  
Treatment Goals ◽  
Office Visits ◽  
Future Planning ◽  
Course Of Illness

22 Background: Prognostic awareness, which incorporates understanding of treatment goals, curability, life-expectancy, and anticipated course of illness, is critical to informed decision-making. In this qualitative study, we explored how balanced framing is utilized during prognostic discussions in oncology office visits. Methods: We (2 oncologists, 3 palliative care physicians) performed a secondary analysis of transcripts of audio-recorded visits between oncologists, caregivers, and patients with advanced cancer obtained as part of a large NIH-funded study. Transcripts were from one study site and included a variety of oncologists, cancer sites, and levels of patient prognostic awareness, as defined by concordance with the oncologist. For analysis, we chose transcripts with some discussion relating to prognosis (eg. treatment goals, etc.). We met regularly to identify themes contributing to prognostic awareness. Differences were reconciled via group discussion. This process continued iteratively until saturation was achieved (n = 24). Results: Prognosis content was reviewed during discussion of treatment goals (n = 15), life-expectancy (n = 14), and future planning (n = 18). In 8 examples of balanced framing of treatment options, oncologists acknowledged the uncertain benefit of treatment and considered patient quality of life; in 7 that did not, oncologists presented treatment as default and emphasized positive outcomes. In 8 examples of balanced framing in estimating life-expectancy, oncologists presented patient-specific ranges and acknowledged exceptionally long and short survival possibilities; in 6 that did not, oncologists provided broad ranges or focused on unusually long survival. In 6 examples of balanced framing in future planning, oncologists acknowledged best supportive care as an alternative to treatment; of 12 that did not, only the next line in treatment or clinical trial was discussed. Conclusions: Although prior research suggests that balanced framing is uncommon, we have identified occasions in which it occurs and characterized how it can be accomplished in prognostic discussions. Further study is needed to better understand the effect of balanced framing on patient prognostic awareness.

Effects of an Oncology Nurse-Led, Primary Palliative Care Intervention (CONNECT) on Illness Expectations Among Patients With Advanced Cancer

2021 ◽  
Author(s):  
Lauren E. Sigler ◽  
Andrew D. Althouse ◽  
Teresa H. Thomas ◽  
Robert M. Arnold ◽  
Douglas White ◽  
...  
Keyword(s):  
Palliative Care ◽  
Life Expectancy ◽  
Advanced Cancer ◽  
Terminal Illness ◽  
Treatment Options ◽  
Secondary Analysis ◽  
Cluster Randomized Trial ◽  
Oncology Nurse ◽  
Care Intervention ◽  
Treatment Intent

PURPOSE: Patients with advanced cancer often have unrealistic expectations about prognosis and treatment. This study assessed the effect of an oncology nurse-led primary palliative care intervention on illness expectations among patients with advanced cancer. METHODS: This study is a secondary analysis of a cluster-randomized trial of primary palliative care conducted at 17 oncology clinics. Adult patients with advanced solid tumors for whom the oncologist would not be surprised if died within 1 year were enrolled. Monthly visits were designed to foster realistic illness expectations by eliciting patient concerns and goals for their medical care and empowering patients and families to engage in discussions with oncologists about treatment options and preferences. Baseline and 3-month questionnaires included questions about life expectancy, treatment intent, and terminal illness acknowledgment. Odds of realistic illness expectations at 3 months were adjusted for baseline responses, patient demographic and clinical characteristics, and intervention dose. RESULTS: Among 457 primarily White patients, there was little difference in realistic illness expectations at 3 months between intervention and standard care groups: 12.8% v 11.4% for life expectancy (adjusted odds ratio [aOR] = 1.15; 95% CI, 0.59 to 2.22; P = .684); 24.6% v 33.3% for treatment intent (aOR = 0.76; 95% CI, 0.44 to 1.27; P = .290); 53.6% v 44.7% for terminal illness acknowledgment (aOR = 1.28; 95% CI, 0.81 to 2.00; P = .288). Results did not differ when accounting for variation in clinic sites or intervention dose. CONCLUSION: Illness expectations are difficult to change among patients with advanced cancer. Additional work is needed to identify approaches within oncology practices that foster realistic illness expectations to improve patient decision making.

DIAGNOSTICS OF THE CURRENT STATE OF HEALTHCARE IN RUSSIA

2020 ◽  
Vol 15 (5) ◽  
pp. 35-55
Author(s):  
N.P. STARYKH ◽  
◽  
A.V. EGOROVA ◽  
Keyword(s):  
Health Care ◽  
Life Expectancy ◽  
Statistical Data ◽  
Secondary Analysis ◽  
World Health ◽  
Healthy Life Expectancy ◽  
Federal State ◽  
Sociological Research ◽  
Healthy Life ◽  
Current State

The purpose of the article is to analyze the current state of healthcare in Russia. Scientific novelty of the study: the authors suggest that the efficiency of the health care system depends on the state of such indicators of public health as life expectancy and healthy life expectancy. Life expectancy is an integrated demographic indicator that characterizes the number of years that a person would live on average, provided that the age-specific mortality rate of a generation would be at the level for which the indicator was calculated throughout life. The indicator ‘healthy life expectancy’ is formed by subtracting the number of years of unhealthy life (due to chronic diseases, disabilities, mental and behavioral disorders, etc.) from the life expectancy indicator. Results: the article presents an analysis of the current state of Russian healthcare based on statistical data provided by the Federal State Statistics Service, the World Health Organization, and world rankings. Attention is focused on the perceptions of Russians about the quality of medical services and Russian healthcare. Conclusions about the current state of health care in Russia are formulated by the authors, based on a secondary analysis of statistical data, as well as data from sociological research presented by leading Russian sociological centers.

Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer

2021 ◽  
pp. 104345422199232
Author(s):  
Piera C. Robson ◽  
Mary S. Dietrich ◽  
Terrah Foster Akard
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Family Income ◽  
Hematologic Malignancy ◽  
Secondary Analysis ◽  
Quality Of Life Inventory ◽  
Younger Age ◽  
Self Reports ◽  
Life Inventory

Background: Children with cancer often experience decreased quality of life (QOL) throughout the illness trajectory. The purpose of this study was to explore the associations of demographic characteristics with QOL in children with advanced cancer. Methods: This secondary analysis was part of a larger randomized clinical trial that evaluated the efficacy of a legacy intervention for children (7–17 years) with relapsed/refractory cancer and their primary parent caregivers. Assessments included child self-reports on the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Researchers used descriptive and linear regression statistical methods. Results: Children ( n = 128) averaged 10.9 years (SD = 3.0). The majority were female ( n = 68, 53%), white ( n = 107, 84%), had a hematologic malignancy ( n = 67, 52%), with family incomes of $50,000 or less ( n = 81, 63.3%). Statistically significant positive associations of both age and income level with PedsQL scores were observed ( p < .05) but not gender ( p > .05). The strongest correlations for age were with the procedural anxiety ( beta = 0.42), treatment anxiety ( beta = 0.26), and total ( beta = 0.28) scores (all p < .01). In general, there was a positive correlation between family income levels and PedsQL scores ( p < .05). The strongest correlations for income were with nausea ( R = 0.49), appearance ( R = 0.44), pain, and treatment anxiety (both R = 0.42) (all p < .01). Associations adjusted for age remained essentially the same (all p < .01). Discussion: Children with advanced cancer with lower family income and younger age are at high risk for poorer QOL. Oncology nurses should seek to identify families who may benefit from additional resources to promote QOL.

Real-world treatment patterns in relapsed/refractory multiple myeloma: Clinical and economic outcomes in patients treated with pomalidomide or daratumumab

2021 ◽  
pp. 107815522199553
Author(s):  
Joshua Richter ◽  
Vamshi Ruthwik Anupindi ◽  
Jason Yeaw ◽  
Suneel Kudaravalli ◽  
Stojan Zavisic ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Real World ◽  
Treatment Options ◽  
Proteasome Inhibitors ◽  
Economic Outcomes ◽  
Office Visits ◽  
Refractory Multiple Myeloma ◽  
Kaplan Meier ◽  
Real World Evidence ◽  
New Treatment

Introduction Real-world evidence on later line treatment of relapsed/refractory multiple myeloma (RRMM) is sparse. We evaluated clinical outcomes among RRMM patients in the 1-year following treatment with pomalidomide or daratumumab and compared economic outcomes between RRMM patients and non-MM patients. Patient and Methods Adult patients with ≥1 claim of pomalidomide or daratumumab were identified between January 2012 and February 2018 using IQVIA PharMetrics® Plus US claims database. Patients were required to have a diagnosis or treatment for MM and a claim of any immunomodulatory drugs and proteasome inhibitors before the index date. Mean time to new therapy, overall survival (OS) using Kaplan-Meier curve and adverse events (AEs) were reported over the 1-year post-index period. RRMM patients were also matched to a non-MM comparator cohort and economic outcomes were compared between the two cohorts. Results 289 RRMM patients were matched to 1,445 patients without MM. Most prevalent hematological AE was anemia (72.0%) and non-hematological AE was infections (75.4%). Mean (SD) time to a new treatment was 4.7 (5.3) months and median OS was 14.6 months. RRMM patients had significantly higher hospitalizations and physician office visits (Both P < .0001) compared to non-MM patients. Adjusting for baseline characteristics, patients with RRMM had 4.9 times (95% CI 3.8-6.4, P < .0001) the total healthcare costs compared with patients without MM. The major driver of total costs among RRMM patients was pharmacy costs (67.3%). Conclusion RRMM patients showed a high frequency of AEs, low OS, and a substantial economic burden suggesting need for effective treatment options.

scholarly journals Characterization and Treatment Goals of Patients on Long-Acting Injectable vs Oral Antipsychotics: Results from a Patient/Caregiver/Psychiatrist Survey

CNS Spectrums ◽  
2021 ◽  
Vol 26 (2) ◽  
pp. 154-154
Author(s):  
Heather M. Fitzgerald ◽  
Jason Shepherd ◽  
Hollie Bailey ◽  
Mia Berry ◽  
Jack Wright ◽  
...  
Keyword(s):  
Real World ◽  
Sufficient Evidence ◽  
Treatment Goals ◽  
Full Time ◽  
Medication Regimen ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Course Of Illness ◽  
Current Medication ◽  
Long Acting

AbstractBackgroundPatient preferences in schizophrenia (SCZ), including identification of key goals and outcomes for treatment and relative importance of certain treatment goals to patients, have been assessed by several studies. However, there continues to be a lack of sufficient evidence on US patient attitudes and perceptions towards treatment goals and pharmacotherapy options in SCZ, especially taking into context long-acting injectable antipsychotics (LAIs) in this disease area. This lack of evidence is further pronounced in caregivers of individuals with SCZ. The objective of this analysis was to characterize patients with SCZ on LAIs vs patients on oral antipsychotics (OAPs) and evaluate the treatment goals of patients in each group.MethodsThis was a real-world, cross-sectional survey of US psychiatrists, patients =18 years old with a diagnosis of SCZ, and caregivers. Data was collected using the Disease Specific Programme (DSP) methodology, which has been previously published. Psychiatrists (n=120) completed detailed record forms for next 8 consecutive outpatients and 2 inpatients matching inclusion criteria, including non-interventional clinical and subjective assessments. The same patients and their caregivers, if present, were invited by their psychiatrist to voluntarily complete a separate survey.ResultsOf 1135 patients on treatment where the physician provided survey data; 251 were on an LAI, and 884 were on an OAP. Mean (SD) time to SCZ diagnosis for those on an LAI was 10.3 (12.0) years vs 7.8 (10.5) years for those on OAPs. More patients in the LAI vs OAP group were being treated as an inpatient (27.1% vs 15.7%, respectively; p<0.0001). Patients on an LAI reported being on their current medication regimen for less time (mean 1.7 years) vs those on OAPs (mean 2.5 years) (p=0.0093). More patients on LAIs were unemployed due to disability vs those on OAPs (56.1% vs 39.5%, respectively), and less patients on LAIs were able to work part-time or full-time (21.1% or 4.1%) vs those on OAPs (23.2% or 11.4%). More patients on an LAI had a caregiver vs those on OAPs (37.3% vs 26.1%, respectively; p=0.0011). Regarding the most important treatment goals reported by patients, both groups reported similar preferences for decrease in disease symptoms (62% on LAI vs 65% on OAPs) and thinking more clearly (53% on LAI vs 46% on OAPs); however, a numerically higher proportion of LAI patients reported that the current medication helped decrease hospitalizations due to relapse vs those on OAPs (38% vs 32%, respectively).DiscussionGiven the characteristics of patients participating in this real-world survey, those on LAIs exhibited qualities which indicate a higher severity of illness vs those on OAPs. Results suggest that treatment with LAIs is still mainly being provided to patients later in the disease course and/or who have adherence problems, despite a growing body of evidence of utility in younger patients earlier in the course of illness.FundingOtsuka Pharmaceutical Development & Commercialization, Inc. and Lundbeck LLC

scholarly journals Reframing the Medication Experience in Pharmacy Using Seminal Concepts of Patient-Centered Care—Implications for Practice

Pharmacy ◽  
2021 ◽  
Vol 9 (1) ◽  
pp. 9
Author(s):  
Brian Isetts ◽  
Anthony Olson ◽  
Jon Schommer
Keyword(s):  
Therapeutic Relationship ◽  
Secondary Analysis ◽  
Patient Centered Care ◽  
National Sample ◽  
Patient Specific ◽  
Structured Interviews ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Centered Care ◽  
Medication Experience

Team-based, Patient-Centered Care is essential to chronic disease prevention and management but there are differing ideas about the concept’s meaning across healthcare populations, settings and professions. This commentary’s objective is to empirically evaluate the theoretical relationships of the [a] Medication Experience, [b] Patient-Centeredness and other relevant component concepts from pharmaceutical care (i.e., [c] Therapeutic Relationship, [d] Patient-specific preferences for achieving goals of therapy and resolving drug therapy problems) so as to provide practice-based insights. This is achieved using a secondary analysis of 213 excerpts generated from in-depth semi-structured interviews with a national sample of pharmacists and patients about Patient-Centeredness in pharmacist practice. The four component concepts (i.e., a–d) related to the objective were examined and interpreted using a novel 3-archetype heuristic (i.e., Partner, Client and Customer) revealing common practice-based themes related to care preferences and expectations in collaborative goal setting, enduring relationships, value co-creation and evolving patient expectations during challenging medical circumstances. Most practice-based insights were generated within the Partner archetype, likely reflecting high congruence with pharmacist and patient responses related to the Medication Experience and Therapeutic Relationship. The practice-based insights may be especially useful for new practitioners and students accelerating their advancement in providing effective and efficient Patient-Centered Care.

scholarly journals QOLP-37. QUALITATIVE RESEARCH IN LOWER GRADE GLIOMA: UNDERSTANDING SIGNS, SYMPTOMS, AND DISEASE IMPACTS DURING EXPECTANT MANAGEMENT

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi206-vi206
Author(s):  
Audra Boscoe ◽  
Ted Wells ◽  
Christina Graham ◽  
Caitlin Pohl ◽  
Brooke Witherspoon ◽  
...  
Keyword(s):  
Treatment Options ◽  
Expectant Management ◽  
Signs And Symptoms ◽  
Molecular Therapy ◽  
Patient Specific ◽  
Lower Grade ◽  
Concept Elicitation ◽  
Post Surgery ◽  
Lower Grade Glioma ◽  
Isocitrate Dehydrogenase Mutation

Abstract BACKGROUND Patients with lower grade glioma (LGG) (i.e., grade II or III) have limited treatment options. After surgical resection of their tumor, patients will undergo either a period of expectant management (watch and wait) or treatment with adjuvant chemotherapy and/or radiotherapy. Approximately 80% of patients with LGG have an isocitrate dehydrogenase mutation, which is a viable target for molecular therapy. This offers a therapeutic intervention that could potentially delay the need for chemotherapy and/or radiotherapy in select patients. Several prognostic and patient-specific factors contribute to the decision to recommend expectant management, including concerns about the side effects of chemotherapy and radiotherapy. The aim of this project was to understand patients’ signs and symptoms during the expectant management period and how LGG impacts their lives. METHODS Concept elicitation interviews were conducted in the US with patients with LGG as well as key opinion leaders (KOLs) with experience treating patients with LGG. Interview data were analyzed using Atlas.ti, and patient data were reviewed against KOL data. RESULTS Seven patients with ≥ 3 months of expectant management experience and three KOLs were interviewed. During their expectant management periods, patients reported 12 signs/symptoms, mostly related to deficits in cognition. Patients reported 16 impacts across four categories, with a substantial proportion of the impacts identified as negatively affecting emotional function. The signs/symptoms and impacts reported by patients were generally also reported by KOLs. During expectant management, patients typically resume their original quality of life post-surgery, but may also experience anxiety. Patients and KOLs indicated a preference for expectant management and delaying chemotherapy or radiotherapy. CONCLUSIONS Patient and KOL interviews characterized the LGG experience and indicated a preference for expectant management, which may be supported by therapies that delay the initiation of chemotherapy and/or radiotherapy.

scholarly journals Patterns of Survival Among Patients With Myeloproliferative Neoplasms Diagnosed in Sweden From 1973 to 2008: A Population-Based Study

2012 ◽  
Vol 30 (24) ◽  
pp. 2995-3001 ◽  
Author(s):  
Malin Hultcrantz ◽  
Sigurdur Yngvi Kristinsson ◽  
Therese M.-L. Andersson ◽  
Ola Landgren ◽  
Sandra Eloranta ◽  
...  
Keyword(s):  
General Population ◽  
Life Expectancy ◽  
Excess Mortality ◽  
Myeloproliferative Neoplasms ◽  
Treatment Options ◽  
Large Population ◽  
Relative Survival ◽  
Population Based ◽  
Population Based Study ◽  
Over Time

PurposeReported survival in patients with myeloproliferative neoplasms (MPNs) shows great variation. Patients with primary myelofibrosis (PMF) have substantially reduced life expectancy, whereas patients with polycythemia vera (PV) and essential thrombocythemia (ET) have moderately reduced survival in most, but not all, studies. We conducted a large population-based study to establish patterns of survival in more than 9,000 patients with MPNs.Patients and MethodsWe identified 9,384 patients with MPNs (from the Swedish Cancer Register) diagnosed from 1973 to 2008 (divided into four calendar periods) with follow-up to 2009. Relative survival ratios (RSRs) and excess mortality rate ratios were computed as measures of survival.ResultsPatient survival was considerably lower in all MPN subtypes compared with expected survival in the general population, reflected in 10-year RSRs of 0.64 (95% CI, 0.62 to 0.67) in patients with PV, 0.68 (95% CI, 0.64 to 0.71) in those with ET, and 0.21 (95% CI, 0.18 to 0.25) in those with PMF. Excess mortality was observed in patients with any MPN subtype during all four calendar periods (P < .001). Survival improved significantly over time (P < .001); however, the improvement was less pronounced after the year 2000 and was confined to patients with PV and ET.ConclusionWe found patients with any MPN subtype to have significantly reduced life expectancy compared with the general population. The improvement over time is most likely explained by better overall clinical management of patients with MPN. The decreased life expectancy even in the most recent calendar period emphasizes the need for new treatment options for these patients.

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