Care Providers’ Integration of Family Requests in End-of-life Communication: Understanding What to Do and Why to Do It

End-of-life situations are fraught with challenges for patients, family members, and individuals working at the patient’s bedside. Care workers must address needs of the patient, as well as his or her distressed family members. This article is an inductive investigation of care workers’ (nurses, patient advocates, and clergy) experiences with end-of-life discussions when the family asks to “do everything.” Participants also noted resistance to hospice in some of these encounters based on pre-existing connotations of hospice held by the family members. The article concludes with a discussion about how identifying end-of-life terms may be transformed to be more accessible for family members.     

Comparing Decision Making Between Cancer Patients and the General Population: Thoughts,Emotions, or Social Influence?

This study extends a risk information seeking and processing model to explore the relative effect of cognitive processing strategies, positive and negative emotions, and normative beliefs on individuals' decision making about potential health risks. Most previous research based on this theoretical framework has examined environmental risks. Applying this risk communication model to study health decision making presents an opportunity to explore theoretical boundaries of the model, while also bringing this research to bear on a pressing medical issue: low enrollment in clinical trials. Comparative analysis of data gathered from 2 telephone surveys of a representative national sample (n = 500) and a random sample of cancer patients (n = 411) indicated that emotions played a more substantive role in cancer patients' decisions to enroll in a potential trial, whereas cognitive processing strategies and normative beliefs had greater influences on the decisions of respondents from the national sample.     

Partitioned Survival and State Transition Models for Healthcare Decision Making in Oncology: Where Are We Now?

ObjectivesPartitioned survival models (PSMs) are routinely used to inform reimbursement decisions for oncology drugs. We discuss the appropriateness of PSMs compared to the most common alternative, state transition models (STMs).MethodsIn 2017, we published a National Institute for Health and Care Excellence (NICE) Technical Support Document (TSD 19) describing and critically reviewing PSMs. This article summarizes findings from TSD 19, reviews new evidence comparing PSMs and STMs, and reviews recent NICE appraisals to understand current practice.ResultsPSMs evaluate state membership differently from STMs and do not include a structural link between intermediate clinical endpoints (eg, disease progression) and survival. PSMs directly consider clinical trial endpoints and can be developed without access to individual patient data, but limit the scope for sensitivity analyses to explore clinical uncertainties in the extrapolation period. STMs facilitate these sensitivity analyses but require development of robust survival models for individual health-state transitions. Recent work has shown PSMs and STMs can produce substantively different survival extrapolations and that extrapolations from STMs are heavily influenced by specification of the underlying survival models. Recent NICE appraisals have not generally included both model types, reviewed individual clinical event data, or scrutinized life-years accrued in individual health states.ConclusionsThe credibility of survival predictions from PSMs and STMs, including life-years accrued in individual health states, should be assessed using trial data on individual clinical events, external data, and expert opinion. STMs should be used alongside PSMs to support assessment of clinical uncertainties in the extrapolation period, such as uncertainty in post-progression survival.     

Who Decides? Decision Making and Fertility Preservation in Teens With Cancer: A Review of the Literature

Purpose

The knowledge that cancer treatment may impair fertility in pediatric populations is an emerging aspect of quality of life in this population. However, decision making and use of fertility preservation (FP) among adolescent cancer patients and their families has not been well studied. This review summarizes the available published data on aspects of decision making and FP in adolescent cancer patients.

Methods

An electronic search was performed to identify peer-reviewed studies published between 1999 and 2009 using key Medical Subject Heading terms and inclusion criteria. Inclusion criteria limited eligible studies to those that focused on adolescent decision making in cancer treatment or FP, fertility concerns in pediatric oncology, capacity for decision making, and health decision making in pediatrics. Studies that did not meet at least one of these criteria were excluded.

Results

A total of 29 articles were reviewed and summarized. Three categories of results were seen: a focus on adolescent decision making in oncology, decision making in chronic illness, and decision making in cancer-related infertility and preservation.

Conclusion

Most of the studies showed that adolescents have a strong desire to participate in decisions related to their cancer treatment and many have concerns regarding their future fertility, although barriers often prevented these discussions. More research is needed to explore the role of teenagers and parents in decisions about fertility in relation to cancer treatment.     

Patient–Provider Discussion About Cancer Treatment Costs and Out-of-Pocket Spending: Implications for Shared Decision Making in Cancer Care

ObjectivesPatient–provider discussion about treatment costs has been recognized as a key component of shared clinical decision making in cancer care. This study examined the association of patient–provider cost discussion with out-of-pocket spending among cancer survivors.MethodsUsing data from the 2016-2017 Medical Expenditure Panel Survey-Experiences with Cancer Survivorship Supplement, cancer survivors in the United States who reported having a detailed discussion about treatment costs were identified. Multivariable generalized linear model with gamma distribution and log-link was fitted to analyze average total out-of-pocket spending between those who had the discussion and those who did not. We also examined whether having the cost discussion is associated with the likelihood of reporting receipt of all cancer care they believed was necessary using a multivariable logistic regression model. All analyses controlled for patient socioeconomic and health-related characteristics.ResultsAmong 1525 individuals, representing 14.6 million cancer survivors in the United States (mean age, 65.5 years; 59% women; 80.4% white), only 10.4% (95% confidence interval [CI], 8.7%-12.1%) reported having the detailed cost discussion with their providers during their cancer care. Having a cost discussion was associated with a −33.8% reduction in (95% CI, −38.2% to −29.6%; an absolute difference of −$478) average total out-of-pocket spending. The probability of receiving all necessary patient-reported cancer care was not different between those who had the discussion and those who did not.ConclusionDetailed patient–provider cost discussions were associated with lower average total out-of-pocket spending. Patients who had detailed cost discussions with providers did not seem to sacrifice the appropriate utilization of necessary cancer treatments.     

Real-World Evidence: Useful in the Real World of US Payer Decision Making? How? When? And What Studies?

Objectives

To examine how real-world evidence (RWE) is currently perceived and used in managed care environments, especially to inform pharmacy and therapeutic (P&T) committee decisions, to assess which study factors (e.g., data, design, and funding source) contribute to RWE utility in decisions, and to identify barriers to consideration of RWE studies in P&T decision making.

Health Technology Assessment–Informed Decision Making by the Federal Joint Committee/Institute for Quality and Efficiency in Health Care in Germany and the National Institute for Health and Care Excellence in England: The Role of Budget Impact

ObjectivesThis study aimed to test (official) evaluation criteria including the potential role of budget impact (BI) on health technology assessment (HTA) outcomes published by the Federal Joint Committee (Gemeinsamer Bundesausschuss [GBA]) and the Institute for Quality and Efficiency in Health Care (Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen [IQWiG]) in Germany as well as the National Institute for Health and Care Excellence (NICE) in England.MethodsData were extracted from all publicly available GBA decisions and IQWiG assessments as well as NICE single technology appraisals between January 2011 and June 2018, and information with regard to evaluation criteria used by these agencies was collected. Data were analyzed using logistic regression to estimate the effect of the BI on the HTA outcomes while controlling for criteria used by GBA/IQWiG and NICE.ResultsNICE recommendations are largely driven by the incremental cost-effectiveness ratio and, if applicable, by end-of-life criteria (P < .01). While IQWiG assessments are significantly affected by the availability of randomized controlled trials and patient-relevant endpoints (P < .01), GBA appraisals primarily focus on endpoints (P < .01). The BI correlated with NICE single technology appraisals (inverted-U relationship, P < .1) and IQWiG recommendations (increasing linear relationship, P < .05), but not with GBA decisions (P > .1). Nevertheless, given that IQWiG assessments seem to be more rigorous than GBA appraisals regarding the consideration of evidence-based evaluation criteria, decisions by GBA might be negatively associated with the BI.ConclusionsResults reveal that GBA/IQWiG and NICE follow their official evaluation criteria consistently. After controlling for all significant variables, the BI seems to have an (independent) effect on HTA outcomes as well.     

Programs for Preventing Depression in Adolescence: Who Benefits and Who Does Not? An Introduction to the Supplemental Issue

We introduce this supplemental issue of Prevention Science, which brings together a set of papers from leading investigators who have conducted trials testing whether intervention programs prevent adolescent depression. Using data from these trials, these papers explore a series of factors that might account for variation in intervention benefit, employing several novel methods for assessing effect heterogeneity. These studies follow two general paradigms: three papers report findings from single randomized preventive intervention trials, while the remaining papers develop and apply new methods for combining data from multiple studies to evaluate effect heterogeneity more broadly. Colleagues from NIMH and SAMHSA also provide commentaries on these studies. They conclude that synthesis of findings from multiple trials holds great promise for advancing the field, and progress will be accelerated if collaborative data sharing becomes the norm rather than the exception.     

An Introduction to “Keeping the ‘Health’ in Health Communication”: A Column Devoted to Interdisciplinary Vocabulary

Health communication research and practice often involve interdisciplinary collaborations. These endeavors include vocabularies associated with the different disciplines and backgrounds of the collaborators. This feature will be devoted to providing glossaries to introduce these vocabularies.     

“Nobody Thinks Twice About Asking”: Women With a Fertility Problem and Requests for Information

For women with a fertility problem, responding to questions about childbearing, pregnancy, and the nature of infertility is a salient issue. In this study of talking about infertility, women described their experiences in handling such requests for information. Results suggest that requests come in a variety of forms, that women attribute multiple and potentially conflicting meanings to such requests, and that requests can elicit a variety of responses. From a communication standpoint, such inquiries suggest the varied ways that conversational partners can attempt to elicit disclosive information, thus enabling or constraining the emergent nature of the interaction.