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1.
Value Health ; 27(2): 206-215, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37949354

RESUMEN

OBJECTIVES: Pulmonary arterial hypertension (PAH) is a chronic, progressive disease of the pulmonary circulation characterized by vascular remodeling that, if untreated, can lead to right heart dysfunction and death. This analysis measured heterogeneity in patient preferences for PAH-specific treatment regimens. METHOD: Adult patients with PAH with slight to marked limitations during physical activity were recruited through a patient organization in Germany. Participants completed an online best-worst scaling case 3 survey. Patients chose among 3 hypothetical treatment profiles defined by 6 benefits and risks at varying levels. Participants completed 12 choice tasks. Preference heterogeneity was assessed using latent class analysis. RESULTS: A total of 83 participants (76% female) completed the survey. Best-fit model revealed 4 classes. Class 1 (19% of participants) assigned importance to multiple attributes particularly side effects, class 2 (34%) to physical activity limitations, class 3 (30%) to survival and physical activity limitations, and class 4 (17%) to survival. No differences in sociodemographic characteristics were observed across classes. Compared with other classes, class 4 was most likely to report having marked physical activity limitations (79%) and needing daily help (100%), while considering higher daily activity levels to be ordinary (walking >1 km [71%] or climbing several flights of stairs [50%]). CONCLUSION: This first patient preference study in a PAH population suggests that physical activity limitations in addition to survival matter most to patients; however, preference heterogeneity between groups of patients was observed. Patient preferences should be considered in treatment decision making to better balance patient's expectations regarding the known risk-benefit ratio of treatment.


Asunto(s)
Hipertensión Arterial Pulmonar , Adulto , Humanos , Femenino , Masculino , Prioridad del Paciente , Análisis de Clases Latentes , Encuestas y Cuestionarios , Medición de Riesgo
2.
J Gen Intern Med ; 34(11): 2512-2519, 2019 11.
Artículo en Inglés | MEDLINE | ID: mdl-31452029

RESUMEN

BACKGROUND/OBJECTIVES: Many older adults receive unnecessary screening colonoscopies. We previously conducted a survey using a national online panel to assess older adults' preferences for how clinicians can discuss stopping screening colonoscopies. We sought to assess the generalizability of those results by comparing them to a sample of older adults with low health literacy. DESIGN: Cross-sectional survey. SETTING: Baltimore metropolitan area (low health literacy sample) and a national, probability-based online panel-KnowledgePanel (national sample). PARTICIPANTS: Adults 65+ with low health literacy measured using a single-question screen (low health literacy sample, n = 113) and KnowledgePanel members 65+ who completed survey about colorectal cancer screening (national sample, n = 441). MEASUREMENTS: The same survey was administered to both groups. Using the best-worst scaling method, we assessed relative preferences for 13 different ways to explain stopping screening colonoscopies. We used conditional logistic regression to quantify the relative preference for each explanation, where a higher preference weight indicates stronger preference. We analyzed each sample separately, then compared the two samples using Spearman's correlation coefficient, the likelihood ratio test to assess for overall differences between the two sets of preference weights, and the Wald test to assess differences in preference weights for each individual phrases. RESULTS: The responses from the two samples were highly correlated (Spearman's coefficient 0.92, p < 0.0001). The most preferred phrase to explain stopping screening colonoscopy was "Your other health issues should take priority" in both groups. The three least preferred options were also the same for both groups, with the least preferred being "The doctor does not give an explanation." The explanation that referred to "quality of life" was more preferred by the low health literacy group whereas explanations that mentioned "unlikely to benefit" and "high risk for harms" were more preferred by the national survey group (all p < 0.001). CONCLUSION: Among two different populations of older adults with different health literacy levels, the preferred strategies for clinicians to discuss stopping screening colonoscopies were highly correlated. Our results can inform effective communication about stopping screening colonoscopies in older adults across different health literacy levels.


Asunto(s)
Colonoscopía/psicología , Alfabetización en Salud/clasificación , Prioridad del Paciente/psicología , Relaciones Médico-Paciente , Anciano , Anciano de 80 o más Años , Estudios de Casos y Controles , Neoplasias Colorrectales/diagnóstico , Estudios Transversales , Femenino , Humanos , Masculino , Calidad de Vida , Encuestas y Cuestionarios
3.
Future Oncol ; 15(34): 3895-3907, 2019 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-31621403

RESUMEN

Aim: EGFR-tyrosine kinase inhibitors (TKIs) vary in efficacy, side effects (SEs) and dosing regimen. We explored EGFR-TKI treatment attribute preferences in EGFR mutation-positive metastatic non-small-cell lung cancer. Materials & methods: Patients completed a survey utilizing preference elicitation methods: direct elicitation of four EGFR-TKI profiles describing progression-free survival (PFS), severe SE risk, administration; discrete choice experiment involving 12 choice tasks. Results: 90 participated. The preferred profile (selected 89% of times) had the longest PFS (18 months) and the lowest severe SE risk (5%). Patients would need compensation with ≥three-times longer PFS for severe SEs. Patients would accept ≤7 months PFS reduction for oral treatments versus intravenous. Conclusion: Patients preferred longer PFS but were willing to accept reduced PFS for more favorable SEs and dosing convenience.


Asunto(s)
Carcinoma de Pulmón de Células no Pequeñas/tratamiento farmacológico , Neoplasias Pulmonares/tratamiento farmacológico , Prioridad del Paciente/psicología , Inhibidores de Proteínas Quinasas/administración & dosificación , Administración Oral , Anciano , Anciano de 80 o más Años , Carcinoma de Pulmón de Células no Pequeñas/genética , Carcinoma de Pulmón de Células no Pequeñas/mortalidad , Diarrea/inducido químicamente , Diarrea/diagnóstico , Diarrea/psicología , Receptores ErbB/antagonistas & inhibidores , Receptores ErbB/genética , Fatiga/inducido químicamente , Fatiga/diagnóstico , Fatiga/psicología , Femenino , Humanos , Neoplasias Pulmonares/genética , Neoplasias Pulmonares/mortalidad , Masculino , Persona de Mediana Edad , Mutación , Náusea/inducido químicamente , Náusea/diagnóstico , Náusea/psicología , Prioridad del Paciente/estadística & datos numéricos , Supervivencia sin Progresión , Inhibidores de Proteínas Quinasas/efectos adversos , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios/estadística & datos numéricos , Factores de Tiempo , Vómitos/inducido químicamente , Vómitos/diagnóstico , Vómitos/psicología
4.
Pituitary ; 22(1): 62-69, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30627944

RESUMEN

PURPOSE: To determine how patients define acromegaly disease activity and treatment success and to quantify from the patients' perspective the relative importance of each disease parameter included in the ACRODAT®. METHODS: One hundred acromegaly patients on medical therapy (mean age = 47.1 years; SD = 11.96) completed an online preference study evaluating hypothetical patient profiles described in terms of insulin-like growth factor-I (IGF-I) levels, tumor size, comorbid conditions, signs/symptoms, and quality of life (QoL). Participants first completed a single-profile task experiment by rating 20 single patient profiles as exhibiting stable, mild, or significant disease activity based on treatment success. Next, participants completed a double-profile discrete choice experiment (DCE) by selecting the patient that was doing "better" from 15 profile pairs. Results were analyzed using logistic and conditional logistic models. RESULTS: When choosing between stable vs. mild or significant disease activity, signs/symptoms, tumor size, and IGF-I levels were weighted equally; IGF-I and signs and symptoms were valued equally when selecting mild vs. significant disease activity. The DCE showed that, statistically, all disease parameters, except comorbid conditions, predicted health status equally. Tumor size and IGF-I levels each accounted for 23% of the decision-making process; QoL, signs/symptoms, and comorbid conditions accounted for 21%, 19%, and 14%, respectively. CONCLUSION: All five ACRODAT® parameters had some influence on disease activity from the patients' perspective. To account for patients' preferences and optimize treatment and outcomes, a holistic disease management approach should be employed.


Asunto(s)
Acromegalia/metabolismo , Factor I del Crecimiento Similar a la Insulina/metabolismo , Adulto , Manejo de la Enfermedad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida
5.
Value Health ; 21(1): 59-68, 2018 01.
Artículo en Inglés | MEDLINE | ID: mdl-29304942

RESUMEN

OBJECTIVES: To consolidate and illustrate good research practices in health care to the application and reporting of a study measuring patient preferences for type 2 diabetes mellitus medications, given recent methodological advances in stated-preference methods. METHODS: The International Society for Pharmacoeconomics and Outcomes Research good research practices and other recommendations were used to conduct a discrete-choice experiment. Members of a US online panel with type 2 diabetes mellitus completed a Web-enabled, self-administered survey that elicited choices between treatment pairs with six attributes at three possible levels each. A D-efficient experimental design blocked 48 choice tasks into three 16-task surveys. Preference estimates were obtained using mixed logit estimation and were used to calculate choice probabilities. RESULTS: A total of 552 participants (51% males) completed the survey. Avoiding 90 minutes of nausea was valued the highest (mean -10.00; 95% confidence interval [CI] -10.53 to -9.47). Participants wanted to avoid low blood glucose during the day and/or night (mean -3.87; 95% CI -4.32 to -3.42) or one pill and one injection per day (mean -7.04; 95% CI -7.63 to -6.45). Participants preferred stable blood glucose 6 d/wk (mean 4.63; 95% CI 4.15 to 5.12) and a 1% decrease in glycated hemoglobin (mean 5.74; 95% CI 5.22 to 6.25). If cost increased by $1, the probability that a treatment profile would be chosen decreased by 1%. CONCLUSIONS: These results are consistent with the idea that people have strong preferences for immediate consequences of medication. Despite efforts to produce recommendations, ambiguity surrounding good practices remains and various judgments need to be made when conducting stated-preference studies. To ensure transparency, these judgments should be described and justified.


Asunto(s)
Conducta de Elección , Diabetes Mellitus Tipo 2/tratamiento farmacológico , Hipoglucemiantes/uso terapéutico , Prioridad del Paciente , Calidad de Vida , Adulto , Anciano , Anciano de 80 o más Años , Toma de Decisiones , Diabetes Mellitus Tipo 2/psicología , Femenino , Humanos , Internet , Masculino , Cumplimiento de la Medicación , Persona de Mediana Edad , Proyectos de Investigación , Encuestas y Cuestionarios , Estados Unidos
6.
Ann Fam Med ; 16(6): 530-537, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-30420368

RESUMEN

PURPOSE: Clinical practice guidelines recommend incorporating long-term life expectancy to inform a number of decisions in primary care. We aimed to examine older adults' preferences for discussing life expectancy in a national sample. METHODS: We invited 1,272 older adults (aged 65 or older) from a national, probability-based online panel to participate in 2016. We presented a hypothetical patient with limited life expectancy who was not imminently dying. We asked participants if they were that patient, whether they would like to talk with the doctor about how long they may live, whether it was acceptable for the doctor to offer this discussion, whether they want the doctor to discuss life expectancy with family or friends, and when it should be discussed. RESULTS: The 878 participants (69.0% participation rate) had a mean age of 73.4 years. The majority, 59.4%, did not want to discuss how long they might live in the presented scenario. Within this group, 59.9% also did not think that the doctor should offer the discussion, and 87.7% also did not want the doctor to discuss life expectancy with family or friends. Fully 55.8% wanted to discuss life expectancy only if it were less than 2 years. Factors positively associated with wanting to have the discussion included higher educational level, believing that doctors can accurately predict life expectancy, and past experience with either a life-threatening illness or having discussed life expectancy of a loved one. Reporting that religion is important was negatively associated. CONCLUSIONS: The majority of older adults did not wish to discuss life expectancy when we depicted a hypothetical patient with limited life expectancy. Many also did not want to be offered discussion, raising a dilemma for how clinicians may identify patients' preferences regarding this sensitive topic.


Asunto(s)
Comunicación , Esperanza de Vida , Cuidados a Largo Plazo/psicología , Prioridad del Paciente/psicología , Atención Primaria de Salud/métodos , Anciano , Anciano de 80 o más Años , Actitud Frente a la Muerte , Toma de Decisiones , Femenino , Humanos , Masculino , Investigación Cualitativa , Encuestas y Cuestionarios
7.
Qual Life Res ; 27(9): 2261-2273, 2018 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-29804169

RESUMEN

PURPOSE: Patient preference information (PPI) have an increasing role in regulatory decision-making, especially in benefit-risk assessment. PPI can also facilitate prioritization of symptoms to treat and inform meaningful selection of clinical trial endpoints. We engaged patients and caregivers to prioritize symptoms of Duchenne and Becker muscular dystrophy (DBMD) and explored preference heterogeneity. METHODS: Best-worst scaling (object case) was used to assess priorities across 11 symptoms of DBMD that impact quality of life and for which there is unmet need. Respondents selected the most and least important symptoms to treat among a subset of five. Relative importance scores were estimated for each symptom, and preference heterogeneity was identified using mixed logit and latent class analysis. RESULTS: Respondents included patients (n = 59) and caregivers (n = 96) affected by DBMD. Results indicated that respondents prioritized "weaker heart pumping" [score = 5.13; 95% CI (4.67, 5.59)] and pulmonary symptoms: "lung infections" [3.15; (2.80, 3.50)] and "weaker ability to cough" [2.65; (2.33, 2.97)] as the most important symptoms to treat and "poor attention span" as the least important symptom to treat [- 5.23; (- 5.93, - 4.54)]. Statistically significant preference heterogeneity existed (p value < 0.001). At least two classes existed with different priorities. Priorities of the majority latent class (80%) reflected the aggregate results, whereas the minority latent class (20%) did not distinguish among pulmonary and other symptoms. CONCLUSIONS: Estimates of the relative importance for symptoms of Duchenne muscular dystrophy indicated that symptoms with direct links to morbidity and mortality were prioritized above other non-skeletal muscle symptoms. Findings suggested the existence of preference heterogeneity for symptoms, which may be related to symptom experience.


Asunto(s)
Cuidadores/psicología , Distrofia Muscular de Duchenne/psicología , Participación del Paciente/psicología , Calidad de Vida/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Distrofia Muscular de Duchenne/patología , Adulto Joven
8.
Patient ; 2024 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-38294720

RESUMEN

Following the conceptualization of a well-formulated and relevant research question, selection of an appropriate stated-preference method, and related methodological issues, researchers are tasked with developing a survey instrument. A major goal of designing a stated-preference survey for health applications is to elicit high-quality data that reflect thoughtful responses from well-informed respondents. Achieving this goal requires researchers to design engaging surveys that maximize response rates, minimize hypothetical bias, and collect all the necessary information needed to answer the research question. Designing such a survey requires researchers to make numerous interrelated decisions that build upon the decision context, selection of attributes, and experimental design. Such decisions include considering the setting(s) and study population in which the survey will be administered, the format and mode of administration, and types of contextual information to collect. Development of a survey is an interactive process in which feedback from respondents should be collected and documented through qualitative pre-test interviews and pilot testing. This paper describes important issues to consider across all major steps required to design and test a stated-choice survey to elicit patient preferences for health preference research.

9.
Patient ; 17(2): 179-190, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38103109

RESUMEN

BACKGROUND AND OBJECTIVE: There has been an increase in the study and use of stated-preference methods to inform medicine development decisions. The objective of this study was to identify prioritized topics and questions relating to health preferences based on the perspective of members of the preference research community. METHODS: Preference research stakeholders from industry, academia, consultancy, health technology assessment/regulatory, and patient organizations were recruited using professional networks and preference-targeted e-mail listservs and surveyed about their perspectives on 19 topics and questions for future studies that would increase acceptance of preference methods and their results by decision makers. The online survey consisted of an initial importance prioritization task, a best-worst scaling case 1 instrument, and open-ended questions. Rating counts were used for analysis. The best-worst scaling used a balanced incomplete block design. RESULTS: One hundred and one participants responded to the survey invitation with 66 completing the best-worst scaling. The most important research topics related to the synthesis of preferences across studies, transferability across populations or related diseases, and method topics including comparison of methods and non-discrete choice experiment methods. Prioritization differences were found between respondents whose primary affiliation was academia versus other stakeholders. Academic researchers prioritized methodological/less studied topics; other stakeholders prioritized applied research topics relating to consistency of practice. CONCLUSIONS: As the field of health preference research grows, there is a need to revisit and communicate previous work on preference selection and study design to ensure that new stakeholders are aware of this work and to update these works where necessary. These findings might encourage discussion and alignment among different stakeholders who might hold different research priorities. Research on the application of previous preference research to new contexts will also help increase the acceptance of health preference information by decision makers.


Asunto(s)
Servicios de Salud , Proyectos de Investigación , Humanos , Encuestas y Cuestionarios , Investigadores
10.
JAMA Netw Open ; 6(11): e2342681, 2023 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-37948077

RESUMEN

Importance: Interception therapy requires individuals to undergo treatment to prevent a future medical event, but little is known about preferences of individuals at high risk for lung cancer and whether they would be interested in this type of treatment. Objective: To explore preferences of individuals at high risk for lung cancer for potential interception therapies to reduce this risk. Design, Setting, and Participants: This survey study used a discrete-choice experiment and included hypothetical lung cancer interception treatments with 4 attributes: reduction in lung cancer risk over 3 years, injection site reaction severity, nonfatal serious infection, and death from serious infection. Respondents were assigned to a baseline lung cancer risk of 6%, 10%, or 16% over 3 years. The discrete-choice experiment was administered online (July 13 to September 6, 2022) to US respondents eligible for lung cancer screening according to US Preventive Services Task Force guidelines. Participants included adults aged 50 to 80 years with at least a 20 pack-year smoking history. Statistical analysis was performed from September to December 2022. Main Outcomes and Measures: Attribute-level preference weights were estimated, and conditional relative attribute importance, maximum acceptable risks, and minimum acceptable benefits were calculated. Characteristics of respondents who always selected no treatment were also explored. Results: Of the 803 survey respondents, 495 (61.6%) were female, 138 (17.2%) were African American or Black, 55 (6.8%) were Alaska Native, American Indian, or Native American, 44 (5.5%) were Asian or Native Hawaiian or Other Pacific Islander, 104 (13.0%) were Hispanic, Latin American, or Latinx, and 462 (57.5%) were White, Middle Eastern or North African, or a race or ethnicity not listed; and mean (SD) age was 63.0 (7.5) years. Most respondents were willing to accept interception therapy and viewed reduction in lung cancer risk as the most important attribute. Respondents would accept a greater than or equal to a 12.0 percentage point increase in risk of nonfatal serious infection if lung cancer risk was reduced by at least 20.0 percentage points; and a greater than or equal to 1.2 percentage point increase in risk of fatal serious infection if lung cancer risk was reduced by at least 30.0 percentage points. Respondents would require at least a 15.4 (95% CI, 10.6-20.2) percentage point decrease in lung cancer risk to accept a 12.0 percentage point increase in risk of nonfatal serious infection; and at least a 23.1 (95% CI, 16.4-29.8) percentage point decrease in lung cancer risk to accept a 1.2 percentage point increase in risk of death from serious infection. Respondents who were unwilling to accept interception therapy in any question (129 [16.1%]) were more likely to be older and to currently smoke with no prior cessation attempt, and less likely to have been vaccinated against COVID-19 or examined for skin cancer. Conclusions and Relevance: In this survey study of individuals at high risk of lung cancer, most respondents were willing to consider interception therapy. These results suggest the importance of benefit-risk assessments for future lung cancer interception treatments.


Asunto(s)
Neoplasias Pulmonares , Adulto , Humanos , Femenino , Masculino , Prioridad del Paciente , Detección Precoz del Cáncer , Etnicidad , Encuestas y Cuestionarios
11.
RMD Open ; 8(2)2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-36598004

RESUMEN

OBJECTIVES: To quantify tolerance to risks of preventive treatments among first-degree relatives (FDRs) of patients with rheumatoid arthritis (RA). METHODS: Preventive treatments for RA are under investigation. In a preference survey, adult FDRs assumed a 60% chance of developing RA within 2 years and made choices between no treatment and hypothetical preventive treatment options with a fixed level of benefit (reduction in chance of developing RA from 60% to 20%) and varying levels of risks. Using a probabilistic threshold technique, each risk was increased or decreased until participants switched their choice. Perceived risk of RA, health literacy, numeracy, Brief Illness Perception Questionnaire and Beliefs about Medicines Questionnaire-General were also assessed. Maximum acceptable risk (MAR) was summarised using descriptive statistics. Associations between MARs and participants' characteristics were assessed using interval regression with effects coding. RESULTS: 289 FDRs (80 male) responded. The mean MAR for a 40% reduction in chance of developing RA was 29.08% risk of mild side effects, 9.09% risk of serious infection and 0.85% risk of a serious side effect. Participants aged over 60 years were less tolerant of serious infection risk (mean MAR ±2.06%) than younger participants. Risk of mild side effects was less acceptable to participants who perceived higher likelihood of developing RA (mean MAR ±3.34%) and more acceptable to those believing that if they developed RA it would last for a long time (mean MAR ±4.44%). CONCLUSIONS: Age, perceived chance of developing RA and perceived duration of RA were associated with tolerance to some risks of preventive RA therapy.


Asunto(s)
Antirreumáticos , Artritis Reumatoide , Adulto , Humanos , Masculino , Persona de Mediana Edad , Anciano , Artritis Reumatoide/epidemiología , Artritis Reumatoide/etiología , Artritis Reumatoide/prevención & control , Antirreumáticos/uso terapéutico , Demografía
12.
Patient ; 14(4): 413-420, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-32447607

RESUMEN

Core outcome sets (COS) are becoming increasingly popular in clinical research and can provide important inputs for further health economics and outcomes research (HEOR) studies. Use of standard, consistently reported outcomes can demonstrate and allow differentiation of the effectiveness and value of different treatments. Incorporating patient values during COS development increases the patient centeredness of evidence available across decision-making contexts. However, the approach to meaningful patient engagement in the COS process is evolving and poses both unique challenges and opportunities. We describe an approach to patient-centered COS development and discuss challenges and adaptations to improve engagement across COS projects. We provide examples from our experience in patient engagement for COS development using three completed COS projects. This approach includes patient engagement in terms of partnering with patient organizations, orientation and training, and the consensus process. Including COS in clinical development programs and HEOR will ensure that relevant, consistent outcomes are available for healthcare decision making and should result in faster access to high-value and novel therapies for patients. Patient-centered COS development increases the likelihood that further HEOR studies and decisions made using the COS are relevant to patients.


Asunto(s)
Evaluación de Resultado en la Atención de Salud , Participación del Paciente , Consenso , Técnica Delphi , Humanos , Proyectos de Investigación , Resultado del Tratamiento
13.
Pediatr Pulmonol ; 56(6): 1583-1592, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33729710

RESUMEN

OBJECTIVE: Chronic lung disease of prematurity (CLDP) is a frequent complication of prematurity. We aimed to identify what clinicians believe are the most important factors determining the severity of CLDP in extremely preterm infants (<28 weeks gestational age) after discharge from the neonatal intensive care unit (NICU) through 12 months corrected age (CA), and to evaluate how these factors should be weighted for scoring, to develop a CLDP severity scale. STUDY DESIGN: Clinicians completed a three-round online survey utilizing Delphi methodology. Clinicians rated the importance of various factors used to evaluate the severity of CLDP, from 0 (not at all important) to 10 (very important) for the period between discharge home from the NICU and 12 months CA. Fourteen factors were considered in Round 1; 13 in Rounds 2 and 3. The relative importance of factors was explored via a set of 16 single-profile tasks (i.e., hypothetical patient profiles with varying CLDP severity levels). RESULTS: Overall, 91 clinicians from 11 countries who were experienced in treating prematurity-related lung diseases completed Round 1; 88 completed Rounds 2 and 3. Based on Round 3, the most important factors in determining CLDP severity were mechanical ventilation (mean absolute importance rating, 8.89), supplemental oxygen ≥2 L/min (8.49), rehospitalizations (7.65), and supplemental oxygen <2 L/min (7.56). Single-profile tasks showed that supplemental oxygen had the greatest impact on profile classification. CONCLUSION: The most important factors for clinicians assigning CLDP severity during infancy were mechanical ventilation, supplemental oxygen ≥2 L/min, and respiratory-related rehospitalizations.


Asunto(s)
Displasia Broncopulmonar , Nacimiento Prematuro , Displasia Broncopulmonar/diagnóstico , Displasia Broncopulmonar/epidemiología , Displasia Broncopulmonar/terapia , Femenino , Edad Gestacional , Humanos , Lactante , Recien Nacido Extremadamente Prematuro , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Embarazo
14.
Patient Prefer Adherence ; 14: 927-937, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32581519

RESUMEN

OBJECTIVE: Increased treatment options and longer survival for lung cancer have generated increased interest in patient preferences. Previous studies of patient preferences in lung cancer have not fully explored preference heterogeneity. We demonstrate a method to explore preference heterogeneity in the willingness of patients with lung cancer and caregivers to trade progression-free survival (PFS) with side effects. PATIENTS AND METHODS: Patients and caregivers attending a national lung cancer meeting completed a discrete-choice experiment (DCE) designed through a collaboration with patients. Participants answered 13 choice tasks described across PFS, short-term side effects, and four long-term side effects. Side effects were coded as a one-level change in severity (none-mild, mild-moderate, or moderate-severe). A mixed logit model in willingness-to-pay space estimated preference heterogeneity in acceptable tradeoffs (time equivalents) between PFS and side effects. The study was reported following quality indicators from the United States Food and Drug Administration's patient preference guidance. RESULTS: A total of 87 patients and 24 caregivers participated in the DCE. Participants would trade 3.7 month PFS (95% CI (CI): 3.3-4.1) for less severe functional long-term treatment side effects, 2.3 months for less severe physical long-term effects (CI: 1.9-2.8) and cognitive long-term effects (CI: 1.8-2.8), 0.9 months (CI: 0.4-1.4) for less severe emotional long-term effects, and 1.8 months (CI: 1.4-2.3) for less severe short-term side effects. Most participants (90%) would accept treatment with more severe functional long-term effects for 8.4 additional month PFS. CONCLUSION: Participants would trade PFS for changes in short-term side effects and long-term side effects, although preference heterogeneity existed. Lung cancer treatments that offer less PFS but also less severe side effects might be acceptable to some patients.

15.
Artículo en Inglés | MEDLINE | ID: mdl-32256060

RESUMEN

Introduction: With increasing availability of different treatments for chronic obstructive pulmonary disease (COPD), we sought to understand patient preferences for COPD treatment in the UK, USA, and Germany using a discrete choice experiment (DCE). Methods: Qualitative research identified six attributes associated with COPD maintenance treatments: ease of inhaler use, exacerbation frequency, frequency of inhaler use, number of different inhalers used, side effect frequency, and out-of-pocket costs. A DCE using these attributes, with three levels each, was designed and tested through cognitive interviews and piloting. It comprised 18 choice sets, selected using a D-efficient experimental design. Demographics and disease history were collected and the final DCE survey was completed online by participants recruited from panels in the UK, USA and Germany. Responses were analyzed using mixed logit models, with results expressed as odds ratios (ORs). Results: Overall, 450 participants (150 per country) completed the DCE; most (UK and Germany, 97.3%; USA, 98.0%) were included in the final analysis. Based on relative attribute importance, avoidance of side effects was found to be most important (UK: OR 11.65; USA: OR 7.17; Germany: OR 11.45; all p<0.0001), followed by the likelihood of fewer exacerbations (UK: OR 2.22; USA: OR 1.63; Germany: OR 2.54; all p<0.0001) and increased ease of use (UK: OR 1.84; USA: OR 1.84; Germany: OR 1.60; all p<0.0001). Number of inhalers, out-of-pocket costs, and frequency of inhaler use were found to be less important. Preferences were relatively consistent across the three countries. All participants required a reduction in exacerbations to accept more frequent inhaler use or use of more inhalers. Conclusion: When selecting COPD treatment, individuals assigned the highest value to the avoidance of side effects, experiencing fewer exacerbations, and ease of inhaler use. Ensuring that patients' preferences are considered may encourage treatment compliance.


Asunto(s)
Prioridad del Paciente , Enfermedad Pulmonar Obstructiva Crónica , Alemania , Humanos , Nebulizadores y Vaporizadores , Enfermedad Pulmonar Obstructiva Crónica/diagnóstico , Enfermedad Pulmonar Obstructiva Crónica/tratamiento farmacológico , Reino Unido
16.
Transl Behav Med ; 10(1): 103-113, 2020 02 03.
Artículo en Inglés | MEDLINE | ID: mdl-30855082

RESUMEN

Obesity presents an important public health problem that affects more than a third of the U.S. adult population and that is associated with increased morbidity, mortality, and costs. Previously, we documented that two primary care-based weight loss interventions were clinically effective. To encourage the implementation of and reimbursement for these interventions, we evaluated their relative cost-effectiveness. We performed a cost analysis of the Practice-based Opportunities for Weight Reduction (POWER) trial, a three-arm trial that enrolled 415 patients with obesity from six primary care practices. Trial participants were randomized to a control arm, an in-person support intervention, or a remote support intervention; in the two intervention arms, behavioral interventions were delivered over 24 months, in two phases. Weight loss was measured at 6, 12, and 24 months. Using timesheets and empirical data, we evaluated the cost of the in-person and remote support interventions from the perspective of a health care system delivering the interventions. A univariate sensitivity analysis was conducted to evaluate uncertainty around model assumptions. All comparisons were tested using independent t-tests. Cost of the in-person intervention was higher at 6 months ($113 per participant per month and $117 per kg lost) than the remote support intervention ($101 per participant per month and $99 per kg lost; p < .001). Costs were also higher for the in-person support intervention at 24 months ($73 per participant per month and $342 per kg lost) than for the remote support intervention ($53 per participant per month and $275 per kg lost; p < .001). In the sensitivity analyses, cost ranged from $274/kg lost to $456/kg lost for the in-person support intervention and from $218/kg to $367/kg lost for the remote support intervention. A primary care weight loss intervention administered remotely was relatively more cost-effective than an in-person intervention. Expanding the scope of reimbursable programs to include other cost-effective interventions could help ensure that a broader range of patients receive the type of support needed.


Asunto(s)
Programas de Reducción de Peso , Adulto , Terapia Conductista , Análisis Costo-Beneficio , Humanos , Obesidad/terapia , Pérdida de Peso
17.
Hum Vaccin Immunother ; 15(7-8): 1745-1751, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30951396

RESUMEN

Background. Prior research has identified diverse worries that parents have about HPV vaccination. We sought to understand how parents prioritize worries and to identify subgroups of parents according to shared patterns of worry. Methods. We surveyed a national sample of 431 U.S. parents of adolescents who reported never having talked to their child's healthcare provider about HPV vaccination. Parents completed a best-worst scaling experiment designed to prioritize 11 common worries about HPV vaccination. The experiment used a balanced incomplete block design to present 11 choice tasks consisting of repeated subsets of worries. We used conditional logistic regression to prioritize worries and latent class models with 1-10 classes to identify subgroups of parents with shared worries. Results. Parents most often worried about long-term side effects of HPV vaccination, which about one-third (36%) ranked as their top worry. Other common top-ranked worries were how new the vaccine is (12%), motives of drug companies (12%), short-term side effects (10%), and that it may be unnecessary (10%). Latent class analyses suggested a relatively large number of distinct worry profiles, with most classes characterized by a worry about long-term side effects in combination with one other worry. Discussion. Our findings suggest that providers should be prepared to address concerns about long-term side effects, as this worry was prioritized across many subgroups of parents. However, to best address worry, a tailored, rather than targeted, communication approach may be needed.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Análisis de Clases Latentes , Vacunas contra Papillomavirus/administración & dosificación , Padres/psicología , Aceptación de la Atención de Salud , Vacunación/psicología , Adolescente , Niño , Comunicación , Femenino , Comunicación en Salud , Humanos , Masculino , Infecciones por Papillomavirus/prevención & control , Padres/educación , Encuestas y Cuestionarios
18.
Ophthalmol Glaucoma ; 2(6): 367-373, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-32355909

RESUMEN

Purpose: To quantify patients' preferences for glaucoma outcomes and use this information to prioritize outcomes that are important to patients. Design: A cross-sectional study using best-worst scaling object case (BWS). Participants: Two hundred seventy-four participants newly diagnosed with ocular hypertension or mild to moderate open angle glaucoma from three private practices and one academic medical center in the United States. Methods: We designed a preference-elicitation survey based on findings from 25 semi-structured, qualitative interviews with patients with glaucoma (reported elsewhere). The survey asked participants to rate the importance of 13 glaucoma outcomes on a Likert scale as a warm-up exercise followed by completion of 13 BWS tasks. For each task, we presented participants a subset of four outcomes from the possible thirteen, and participants chose the most important and least important outcome. Outcomes included in the survey pertain to maintaining ability to perform vision-dependent activities of daily living (e.g., driving), maintaining visual function and perception (e.g., depth perception), minimizing need to take glaucoma drops, not experiencing ocular surface symptoms (e.g., red eyes, teary eyes), and having adequate control of intraocular pressure (IOP). We administered the survey online and analyzed response patterns using conditional logistic regression to determine the relative importance of different outcomes. Main outcome: Ordinal ranking of glaucoma outcomes based on preference weights. Results: Between September 1, 2017 and February 28, 2018, we invited 1035 patients to complete our survey, among whom 274 (26%) responded. Most participants were older than 65 years of age (146/274, 53%) and currently on IOP-lowering drops (179/274, 65%). Participants identified that outcomes with the largest relative importance weight were having "adequate IOP control" and ability to "drive a car during the day," and the outcomes with the smallest relative importance weights were "maintaining appearance of the eye" and "reducing the number of IOP-lowering drops". Conclusions: Determining the relative importance of glaucoma outcomes to patients can help researchers design studies that may better inform clinical and regulatory decision-making. Although IOP is an outcome that researchers often measure in glaucoma clinical trials, patients also prioritized outcomes related to the ability to perform vision-dependent activities such as driving.


Asunto(s)
Actividades Cotidianas , Antihipertensivos/uso terapéutico , Glaucoma de Ángulo Abierto/tratamiento farmacológico , Presión Intraocular/fisiología , Hipertensión Ocular/tratamiento farmacológico , Anciano , Estudios Transversales , Femenino , Glaucoma de Ángulo Abierto/fisiopatología , Humanos , Masculino , Persona de Mediana Edad , Hipertensión Ocular/fisiopatología
19.
Prev Med Rep ; 13: 244-248, 2019 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-30719405

RESUMEN

Many older adults receive routine cancer screening even when it is no longer recommended. We sought to identify demographic, health-related, and attitudinal factors that are most predictive of continued breast, colorectal, and prostate cancer screening decisions in older adults under various scenarios. A sample of adults age 65+ (n = 1272) were recruited from a nationally representative panel in November 2016, of which 881 (69.3%) completed our survey. Participants were presented vignettes in which we experimentally varied a hypothetical patient's life expectancy, age, quality of life, and physician screening recommendation. The dependent variable was the choice to continue cancer screening in the vignette. Classification and regression tree (CART) analysis was used to identify characteristics most predictive of screening decisions; both the participants' characteristics and the hypothetical patient's characteristics in the vignettes were included in the analysis. CART analysis uses recursive partitioning to create a classification tree in which variables predictive of the outcome are included as hierarchical tree nodes. We used automated ten-fold cross-validation to select the tree with lowest misclassification and highest predictive accuracy. Participants' attitude towards cancer screening was most predictive of choosing screening. Among those who agreed with the statement "I plan to get screened for cancer for as long as I live" (n = 300, 31.9%), 73.2% chose screening and 57.2% would still choose screening if hypothetical patient had 1-year life expectancy. For this subset of older adults with enthusiasm towards screening even when presented with scenario involving limited life expectancy, efforts are needed to improve informed decision-making about screening.

20.
Med Decis Making ; 39(6): 621-631, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-31226903

RESUMEN

Background. Older adults with limited life expectancy frequently receive cancer screening, although on average, harms outweigh benefits. We examined the influence of life expectancy on older adults' cancer screening decisions relative to three other factors. Methods. Adults aged 65+ years (N = 1272) were recruited from a national online survey panel. Using a discrete choice experiment, we systematically varied a hypothetical patient's life expectancy, age, quality of life, and physician's recommendation and asked whether the participant would choose screening. Participants were randomized to questions about colonoscopy or prostate-specific antigen/mammography screenings. Logistic regression produced preference weights that quantified the relative influence of the 4 factors on screening decisions. Results. 879 older adults completed the survey, 660 of whom varied their screening choices in response to the 4 factors we tested. The age of the hypothetical patient had the largest influence on choosing screening: the effect of age being 65 versus 85 years had a preference weight of 2.44 (95% confidence interval [CI]: 2.22, 2.65). Life expectancy (10 versus 1 year) had the second largest influence (preference weight: 1.64, CI: 1.41, 1.87). Physician recommendation (screen versus do not screen) and quality of life (good versus poor) were less influential, with preference weights of 0.90 (CI: 0.72, 1.08) and 0.68 (CI: 0.52, 0.83), respectively. Conclusions. While clinical practice guidelines increasingly use life expectancy in addition to age to guide screening decisions, we find that age is the most influential factor, independent of life expectancy, quality of life, and physician recommendation, in older adults' cancer screening choices. Strategies to reduce overscreening should consider the importance patients give to continuing screening at younger ages, even when life expectancy is limited.


Asunto(s)
Conducta de Elección , Neoplasias/diagnóstico , Factores de Edad , Anciano , Anciano de 80 o más Años , Estudios Transversales , Toma de Decisiones , Detección Precoz del Cáncer/métodos , Detección Precoz del Cáncer/psicología , Femenino , Humanos , Esperanza de Vida , Masculino , Tamizaje Masivo/métodos , Tamizaje Masivo/psicología , Neoplasias/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios
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