Browsing by Subject "Patient Preference"
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Item Open Access A Systematic Review of Conceptual Frameworks of Medical Complexity and New Model Development.(J Gen Intern Med, 2016-03) Zullig, Leah L; Whitson, Heather E; Hastings, Susan N; Beadles, Chris; Kravchenko, Julia; Akushevich, Igor; Maciejewski, Matthew LBACKGROUND: Patient complexity is often operationalized by counting multiple chronic conditions (MCC) without considering contextual factors that can affect patient risk for adverse outcomes. OBJECTIVE: Our objective was to develop a conceptual model of complexity addressing gaps identified in a review of published conceptual models. DATA SOURCES: We searched for English-language MEDLINE papers published between 1 January 2004 and 16 January 2014. Two reviewers independently evaluated abstracts and all authors contributed to the development of the conceptual model in an iterative process. RESULTS: From 1606 identified abstracts, six conceptual models were selected. One additional model was identified through reference review. Each model had strengths, but several constructs were not fully considered: 1) contextual factors; 2) dynamics of complexity; 3) patients' preferences; 4) acute health shocks; and 5) resilience. Our Cycle of Complexity model illustrates relationships between acute shocks and medical events, healthcare access and utilization, workload and capacity, and patient preferences in the context of interpersonal, organizational, and community factors. CONCLUSIONS/IMPLICATIONS: This model may inform studies on the etiology of and changes in complexity, the relationship between complexity and patient outcomes, and intervention development to improve modifiable elements of complex patients.Item Open Access Do You Want to Hear the Bad News? The Value of Diagnostic Tests for Alzheimer's Disease.(Value Health, 2016-01) Mühlbacher, Axel; Johnson, F Reed; Yang, Jui-Chen; Happich, Michael; Belger, MarkOBJECTIVE: The diagnosis of Alzheimer's disease (AD) remains difficult. Lack of diagnostic certainty or possible distress related to a positive result from diagnostic testing could limit the application of new testing technologies. The objective of this paper is to quantify respondents' preferences for obtaining AD diagnostic tests and to estimate the perceived value of AD test information. METHODS: Discrete-choice experiment and contingent-valuation questions were administered to respondents in Germany and the United Kingdom. Choice data were analyzed by using random-parameters logit. A probit model characterized respondents who were not willing to take a test. RESULTS: Most respondents indicated a positive value for AD diagnostic test information. Respondents who indicated an interest in testing preferred brain imaging without the use of radioactive markers. German respondents had relatively lower money-equivalent values for test features compared with respondents in the United Kingdom. CONCLUSIONS: Respondents preferred less invasive diagnostic procedures and tests with higher accuracy and expressed a willingness to pay up to €700 to receive a less invasive test with the highest accuracy.Item Open Access Population-based biobank participants' preferences for receiving genetic test results.(Journal of human genetics, 2017-12) Yamamoto, Kayono; Hachiya, Tsuyoshi; Fukushima, Akimune; Nakaya, Naoki; Okayama, Akira; Tanno, Kozo; Aizawa, Fumie; Tokutomi, Tomoharu; Hozawa, Atsushi; Shimizu, AtsushiThere are ongoing debates on issues relating to returning individual research results (IRRs) and incidental findings (IFs) generated by genetic research in population-based biobanks. To understand how to appropriately return genetic results from biobank studies, we surveyed preferences for returning IRRs and IFs among participants of the Tohoku Medical Megabank Project (TMM). We mailed a questionnaire to individuals enrolled in the TMM cohort study (Group 1; n=1031) and a group of Tohoku region residents (Group 2; n=2314). The respondents were required to be over 20 years of age. Nearly 90% of Group 1 participants and over 80% of Group 2 participants expressed a preference for receiving their genetic test results. Furthermore, over 60% of both groups preferred to receive their genetic results 'from a genetic specialist.' A logistic regression analysis revealed that engaging in 'health-conscious behaviors' (such as regular physical activity, having a healthy diet, intentionally reducing alcohol intake and/or smoking and so on) was significant, positively associated with preferring to receive their genetic test results (odds ratio=2.397 (Group 1) and 1.897 (Group 2)). Our findings provided useful information and predictors regarding the return of IRRs and IFs in a population-based biobank.Item Open Access Preferences of people living with HIV for differentiated care models in Kenya: A discrete choice experiment.(PloS one, 2021-01) Dommaraju, Sagar; Hagey, Jill; Odeny, Thomas A; Okaka, Sharon; Kadima, Julie; Bukusi, Elizabeth A; Cohen, Craig R; Kwena, Zachary; Eshun-Wilson, Ingrid; Geng, ElvinIntroduction
To improve retention on HIV treatment in Africa, public health programs are promoting a family of innovations to service delivery-referred to as "differentiated service delivery" (DSD) models-which seek to better meet the needs of both systems and patients by reducing unnecessary encounters, expanding access, and incorporating peers and patients in patient care. Data on the relative desirability of different models to target populations, which is currently sparse, can help guide prioritization of specific models during scale-up.Methods
We conducted a discrete choice experiment to assess patient preferences for various characteristics of treatment services. Clinically stable people living with HIV were recruited from an HIV clinic in Kisumu, Kenya. We selected seven attributes of DSD models drawn from literature review and previous qualitative work. We created a balanced and orthogonal design to identify main term effects. A total of ten choice tasks were solicited per respondent. We calculated relative utility (RU) for each attribute level, a numerical representation of the strength of patient preference. Data were analyzed using a Hierarchical Bayesian model via Sawtooth Software.Results
One hundred and four respondents (37.5% men, 41.1 years mean age) preferred receiving care at a health facility, compared with home-delivery or a community meeting point (RU = 69.3, -16.2, and -53.1, respectively; p << 0.05); receiving those services from clinicians and pharmacists-as opposed to lay health workers or peers (RU = 21.5, 5.9, -24.5; p < 0.05); and preferred an individual support system over a group support system (RU = 15.0 and 4.2; p < 0.05). Likewise, patients strongly preferred longer intervals between both clinical reviews (RU = 40.1 and -50.7 for 6- and 1-month spacing, respectively; p < 0.05) and between ART collections (RU = 33.6 and -49.5 for 6- and1-month spacing, respectively; p < 0.05).Conclusion
Although health systems find community- and peer-based DSD models attractive, clinically stable patients expressed a preference for facility-based care as long as clinical visits were extended to biannual. These data suggest that multi-month scripting and fast-track models best align with patient preferences, an insight which can help prioritize use of different DSD models in the region.Item Open Access Risk communication in clinical trials: a cognitive experiment and a survey.(BMC Med Inform Decis Mak, 2010-09-27) Cheung, Yin Bun; Wee, Hwee Lin; Thumboo, Julian; Goh, Cynthia; Pietrobon, Ricardo; Toh, Han Chong; Yong, Yu Fen; Tan, Say BengBACKGROUND: A Royal Statistical Society Working Party recently recommended that "Greater use should be made of numerical, as opposed to verbal, descriptions of risk" in first-in-man clinical trials. This echoed the view of many clinicians and psychologists about risk communication. As the clinical trial industry expands rapidly across the globe, it is important to understand risk communication in Asian countries. METHODS: We conducted a cognitive experiment about participation in a hypothetical clinical trial of a pain relief medication and a survey in cancer and arthritis patients in Singapore. In part 1 of the experiment, the patients received information about the risk of side effects in one of three formats (frequency, percentage and verbal descriptor) and in one of two sequences (from least to most severe and from most to least severe), and were asked about their willingness to participate. In part 2, the patients received information about the risk in all three formats, in the same sequence, and were again asked about their willingness to participate. A survey of preference for risk presentation methods and usage of verbal descriptors immediately followed. RESULTS: Willingness to participate and the likelihood of changing one's decision were not affected by the risk presentation methods. Most patients indicated a preference for the frequency format, but patients with primary school or no formal education were indifferent. While the patients used the verbal descriptors "very common", "common" and "very rare" in ways similar to the European Commission's Guidelines, their usage of the descriptors "uncommon" and "rare" was substantially different from the EU's. CONCLUSION: In this sample of Asian cancer and arthritis patients, risk presentation format had no impact on willingness to participate in a clinical trial. However, there is a clear preference for the frequency format. The lay use of verbal descriptors was substantially different from the EU's.Item Open Access Screening instruments for substance use and brief interventions targeting adolescents in primary care: a literature review.(Addictive behaviors, 2013-05) Pilowsky, Daniel J; Wu, Li-TzyA review of the literature was conducted to examine substance use screening instruments commonly used with adolescents in medical settings, their comparative usefulness, and SBIRT (Screening, Brief Intervention, and Referral to Treatment).We screened two databases (Ovid MEDLINE and PsycINFO) targeting journal articles dealing with screening for alcohol and drug use in adolescence as well as adolescent SBIRT.Adolescents preferred paper forms and computerized questionnaires over interviews with physicians or nurses. The CRAFFT was the best studied instrument for screening for alcohol/drug use and related problems, and is the only tool with data to support its use in medical settings. Other screening instruments require more testing/evaluation in more representative samples of adolescents in primary care settings. Long term follow-up data to establish the efficacy of SBIRT in adolescence are not available. Innovative computerized approaches to screening for substance use in this population have recently been proposed. Although promising, they require further evaluation.The CRAFFT has the most consistent data to support its use in primary care settings. The effects of SBIRT in adolescence have not been adequately evaluated. Adolescents' opinions and preferences for SBIRT should be studied to improve their acceptance.Item Open Access Too much time? Time use and fertility-specific quality of life among men and women seeking specialty care for infertility.(BMC psychology, 2019-07-09) Cusatis, Rachel; Fergestrom, Nicole; Cooper, Alexandra; Schoyer, Kate D; Kruper, Abbey; Sandlow, Jay; Strawn, Estil; Flynn, Kathryn EBACKGROUND:There are known gender differences in the impacts infertility has on quality of life and well-being. Less is known about how infertile couples spend time on fertility-related tasks and associations with quality of life. The purpose of this study is to evaluate whether time spent on tasks related to family-building decision-making (including research, reflection, discussions with partner, discussions with others, and logistics) were associated with fertility-specific quality of life or anxiety among new patients. METHODS:Couples or individuals (N = 156) with upcoming initial consultations with a reproductive specialist completed the Fertility Quality of Life (FertiQoL) tool, which produces a Core (total) score and four subscales: Emotional, Relational, Social, and Mind-Body. We developed questions to measure time spent in the previous 24 h on tasks related to family-building. We tested for differences by gender in time use (McNemar's Test) and used ordinary least squares regression to analyze the relationship between time use and FertiQoL scores. RESULTS:In the week before a new consultation, a higher percentage of women reported time spent in the past 24 h in research, reflecting, discussion with others, and logistics compared to male partners (all p < 0.05). In adjusted models, more time spent reflecting was associated with worse FertiQoL scores for both men and women, as well as with higher anxiety for men. Time spent in discussion with others was associated with higher anxiety for women but better Social FertiQoL scores for men. CONCLUSIONS:Couples seeking infertility consultation with a specialist reported spending time on tasks related to family-building before the initial visit. There were gender differences in the amount of time spent on these tasks, and time was associated with fertility-specific quality of life and anxiety.