Functional status decline as a measure of adverse events in home health care: an observational study

BACKGROUND: Research that examines the quality of home health care is complex because no gold standard exists for measuring adverse outcomes, and because the patient and clinician populations are highly heterogeneous. The objectives in this study are to develop models to predict functional decline for three indices of functional status as measures of adverse events in home health care and determine which index is most appropriate for risk-adjusting for future quality research. METHODS: Data come from the Outcomes and Assessment Information Set (OASIS) from a large urban home health care agency and other agency data. Prognostic data yields 49,437 episodes, while follow-up data yields 47,684 episodes. We tested three indices defined as substantial decline in three or more (gt3_ADLs), two or more (gt2_ADLs), and one or more (gt1_ADLs) ADLs. Multivariate logistic regression determines the performance of the models for each index as measured by the c-statistic and Hosmer-Lemeshow chi square (χ(2)). RESULTS: Frequencies for gt3_ADLs, gt2_ADLs, and gt1_ADLs are 212 (0.43%), 783 (1.58%), and 4,271 (8.64%) respectively. Follow-up results are comparable with frequencies of 218 (0.46%), 763 (1.60%), and 3,949 (8.28%) for each index. Gt3_ADLs does not produce valid models. The model for gt2_ADLs consistently yields a higher c-statistic compared to gt1_ADLs (0.754 vs. 0.679, respectively). Both indices' models yield non-significant Hosmer-Lemeshow chi square indicating reasonable model fit. Findings for gt2_ADLs and gt1_ADLs are consistent over time as indicated by follow-up data results. CONCLUSION: Gt2_ADLs yields the best models as indicated by a high c-statistic and a non-significant Hosmer-Lemeshow χ(2), both of which exhibit exceptional consistency. We conclude that gt2_ADLs may be preferable in defining ADL adverse events in the context of home health care

Assessing Rationality in Discrete Choice Experiments in Health: An Investigation into the Use of Dominance Tests.

BACKGROUND: Dominance tests are often applied to test for the rationality in the choice behavior of participants in discrete choice experiments (DCEs). OBJECTIVES: To examine how dominance tests have been implemented in recent DCE applications in health and discuss their theoretical and empirical interpretation. METHODS: Health-related DCEs published in 2015 were reviewed for the inclusion of tests on choice behavior. For studies that implemented a dominance test, information on application and interpretation of the test was extracted. Authors were contacted for test choice sets and observed proportions of subjects who chose the dominated option. Coefficients corresponding to the choice set were extracted to estimate the expected probability of choosing the dominated option with a logistic model and compared with the observed proportion. The theoretical range of expected probabilities of possible dominance tests was calculated. RESULTS: Of 112 health-related DCEs, 49% included at least one test for choice behavior; 28 studies (25%) included a dominance test. The proportion of subjects in each study who chose the dominated option ranged from 0% to 21%. In 46% of the studies, the dominance test led to the exclusion of participants. In the 15 choice sets that were analyzed, 2 had larger proportions of participants choosing the dominated option than expected (P < 0.05). CONCLUSIONS: Although dominance tests are frequently applied in DCEs, there is no consensus on how to account for them in data analysis and interpretation. Comparison of expected and observed proportions of participants failing the test might be indicative of DCE quality

Identifying and prioritizing strategies for comprehensive liver cancer control in Asia

<p>Abstract</p> <p>Background</p> <p>Liver cancer is both common and burdensome in Asia. Effective liver cancer control, however, is hindered by a complex etiology and a lack of coordination across clinical disciplines. We sought to identify strategies for inclusion in a comprehensive liver cancer control for Asia and to compare qualitative and quantitative methods for prioritization.</p> <p>Methods</p> <p>Qualitative interviews (N = 20) with international liver cancer experts were used to identify strategies using Interpretative Phenomenological Analysis and to formulate an initial prioritization through frequency analysis. Conjoint analysis, a quantitative stated-preference method, was then applied among Asian liver cancer experts (N = 20) who completed 12 choice tasks that divided these strategies into two mutually exclusive and exhaustive subsets. Respondents' preferred plan was the primary outcome in a choice model, estimated using ordinary least squares (OLS) and logistic regression. Priorities were then compared using Spearman's Rho.</p> <p>Results</p> <p>Eleven strategies were identified: <it>Access to treatments; Centers of excellence; Clinical education; Measuring social burden; Monitoring of at-risk populations; Multidisciplinary management; National guidelines; Public awareness; Research infrastructure; Risk-assessment and referral</it>; and <it>Transplantation infrastructure</it>. Qualitative frequency analysis indicated that <it>Risk-assessment and referral </it>(85%), <it>National guidelines </it>(80%) and <it>Monitoring of at-risk populations </it>(80%) received the highest priority, while conjoint analysis pointed to <it>Monitoring of at-risk populations </it>(p < 0.001), <it>Centers of excellence </it>(p = 0.002), and <it>Access to treatments </it>(p = 0.004) as priorities, while <it>Risk-assessment and referral </it>was the lowest priority (p = 0.645). We find moderate concordance between the qualitative and quantitative methods (rho = 0.20), albeit insignificant (p = 0.554), and a strong concordance between the OLS and logistic regressions (rho = 0.979; p < 0.0001).</p> <p>Conclusions</p> <p>Identified strategies can be conceptualized as the ABCs of comprehensive liver cancer control as they focus on <it>Antecedents</it>, <it>Better care </it>and <it>Connections </it>within a national strategy. Some concordance was found between the qualitative and quantitative methods (e.g. <it>Monitoring of at-risk populations</it>), but substantial differences were also identified (e.g. qualitative methods gave highest priority to risk-assessment and referral, but it was the lowest for the quantitative methods), which may be attributed to differences between the methods and study populations, and potential framing effects in choice tasks. Continued research will provide more generalizable estimates of priorities and account for variation across stakeholders and countries.</p

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.

BACKGROUND: Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial interaction between study participants and researchers. PE-CGS sought to set priorities in participant engagement for conducting the network\u27s research. METHODS: PE-CGS deliberatively engaged its stakeholders in the following four-phase process to set the network\u27s research priorities in participant engagement: (i) a brainstorming exercise to elicit potential priorities; (ii) a 2-day virtual meeting to discuss priorities; (iii) recommendations from the PE-CGS External Advisory Panel to refine priorities; and (iv) a virtual meeting to set priorities. RESULTS: Nearly 150 PE-CGS stakeholders engaged in the process. Five priorities were set: (i) tailor education and communication materials for participants throughout the research process; (ii) identify measures of participant engagement; (iii) identify optimal participant engagement strategies; (iv) understand cancer disparities in the context of cancer genomics research; and (v) personalize the return of genomics findings to participants. CONCLUSIONS: PE-CGS is pursuing these priorities to meaningfully engage diverse and underrepresented patients with cancer and posttreatment cancer survivors as participants in cancer genomics research and, subsequently, generate new discoveries. IMPACT: Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement

Controlling liver cancer internationally: A qualitative study of clinicians' perceptions of current public policy needs

<p>Abstract</p> <p>Background</p> <p>Liver cancer is the fifth most common cancer in men and the seventh for women. Usually because of late diagnosis, the prognosis for liver cancer remains poor, resulting in liver cancer being the third most common cause of death from cancer. While some countries have treatment guidelines, little is known or understood about the strategies needed for liver cancer control internationally.</p> <p>Objective</p> <p>To explore leading liver cancer clinician's perceptions of the current public policy needs to control liver cancer internationally.</p> <p>Methods</p> <p>Key informant interviews were conducted with a range of liver cancer clinicians involved in policy in eleven countries. Interviews were digitally recorded, transcribed verbatim, translated (where necessary), de-identified and analyzed by two researchers using a constant comparative method.</p> <p>Results</p> <p>Twenty in-depth semi-structured interviews were conducted in: Australia, China, France, Germany, Italy, Japan, Spain, South Korea, Taiwan, Turkey and the United States. Nine themes were identified and cluster into three groups: 1) Promoting prevention via early risk assessment, focusing on viral hepatitis and other lifestyle factors; 2) Increasing political, public and medical community awareness; and 3) Improving funding for screening, liver cancer surveillance and treatment.</p> <p>Conclusion</p> <p>This study is an important step towards developing an evidence-based approach to assessing preparedness for implementing comprehensive liver cancer control strategies. Evaluation mechanisms to assess countries' performance on the needs described are needed. Future research will concentrate of understanding how these needs vary across countries and the optimal strategies to improve the diagnosis and prognosis of patients with liver cancer internationally.</p

Identifying important breast cancer control strategies in Asia, Latin America and the Middle East/North Africa

Background: Breast cancer is the most frequent cause of cancer death in women worldwide, but global disparities in breast cancer control persist, due to a lack of a comprehensive breast cancer control strategy in many countries. Objectives: To identify and compare the need for breast cancer control strategies in Asia, Latin America and the Middle East/North Africa and to develop a common framework to guide the development of national breast cancer control strategies. Methods: Data were derived from open-ended, semi-structured interviews conducted in 2007 with 221 clinicians, policy makers, and patient advocates; stratified across Asia (n = 97), Latin America (n = 46), the Middle East/North Africa (ME/NA) (n = 39) and Australia and Canada (n = 39). Respondents were identified using purposive and snowballing sampling. Interpretation of the data utilized interpretive phenomenological analysis where transcripts and field notes were coded and analyzed and common themes were identified. Analysis of regional variation was conducted based on the frequency of discussion and the writing of the manuscript followed the RATS guidelines. Results: Analysis revealed four major themes that form the foundation for developing national breast cancer control strategies: 1) building capacity; 2) developing evidence; 3) removing barriers; and 4) promoting advocacy - each specified across five sub-ordinate dimensions. The propensity to discuss most dimensions was similar across regions, but managing advocacy was discussed more frequently (p = 0.004) and organized advocacy was discussed less frequently (p \u3c 0.001) in Australia and Canada. Conclusions: This unique research identified common themes for the development of breast cancer control strategies, grounded in the experience of local practitioners, policy makers and advocacy leaders across diverse regions. Future research should be aimed at gathering a wider array of experiences, including those of patients

Live, Learn, Pass It on

Introduction: The objective of this project was to engage survivor–advocates by describing their experiences living with lung cancer in an era of increasing treatment options. Methods: This was a qualitative engagement project with participants from a lung cancer advocacy organization’s survivor advisory board. Interviews were conducted, transcribed, and analyzed for stages and associated experiences using interpretive phenomenological analysis and elements of narrative analysis, in partnership with the patient advocacy organization. Results: Of 27 engaged members, interviews were conducted with 19, mostly long-term survivors with stage 3 or 4 lung cancer. Within the quest for patient-centeredness, we identified 3 stages of the patient experience. The stage Live describes the journey of the lived experience; Learn describes the quest for knowledge, empowerment, and skills; and Pass it on describes making a difference through guiding others, building awareness, and community. Conclusions: Lung cancer survivor–advocates have an intertwined experience of their personal journey, the quest for knowledge, and developing advocacy. Future patient engagement can incorporate these findings into increasing the survivor-centeredness of partnerships and research, particularly for quality of life and shared decision-making