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BACKGROUND: There is an increasing need to integrate Advance Care Planning (ACP) in nursing homes (NH) due to rapid aging and burden of multimorbidity. This study examines differences in the characteristics and outcomes of NH residents enrolled in a palliative care programme who have completed ACP and those who did not. METHOD: We conducted a retrospective cohort analysis of 294 deceased residents enrolled into a palliative programme from 8 nursing homes in Singapore. Comparison was made between residents who completed an ACP and those who did not. Treatment preferences and place of death preferences were examined and concordance to these preferences were analyzed. RESULTS: ACP completion rate was 81% in the cohort. Residents opting for comfort measures only had high concordance (92%) for their preferred place of death (PPOD). However, residents opting for limited intervention showed lower PPOD concordance (77%), with many dying in hospitals despite a preference for dying in the NH. Residents with ACP were significantly more likely to die in NH (68.2% vs. 36.4%) and had a longer median programme enrolment duration (131 vs. 53 days) compared to those who did not complete ACP. CONCLUSION: Despite high ACP completion rate in our cohort, challenges remain in aligning treatment preferences with actual care provided, particularly for residents opting for limited intervention. Future efforts should focus on increasing ACP participation and addressing systemic barriers to improve end-of-life care outcomes for NH residents.
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Long Acting Injectable (LAI) therapy to treat HIV is an alternative to daily oral medications. The success of early roll-out of LAI to eligible patients requires a better understanding of patients' awareness and interest in this novel therapy. We administered an electronic survey to patients attending an urban HIV clinic in the US South. Eligible participants were 18 + years old with a most recent HIV-1 viral load < 200 copies/ml, without any evidence of genotypic resistance to LAI components or chronic hepatitis B. Survey recipients were asked about current treatment, engagement in care, and knowledge of LAI. Between January-April 2023, 480 patients were screened; 319 were eligible, and 155 (49%) completed the survey. The majority (119, 77%) were aware of, and 87 (56%) were interested in LAI. In regression analysis, only age was associated with interest in LAI (OR 0.95, 95% CI 0.92,0.99). Among proposed benefits of injectables, ease of travel without pills, lack of daily pill-taking, and fewer medication interactions were most appealing. Among proposed concerns with injectables, higher cost and insurance coverage of the new medicine were most worrisome. A large majority of people with HIV (PWH) are aware of the newest treatment available, and just over half of our sample expressed interest in LAI. Older age was associated with lower interest in LAI. LAI is appealing for its convenience, privacy, and avoidance of drug interactions, while the increased costs associated with LAI need to be addressed.
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Fármacos Anti-HIV , Infecções por HIV , Conhecimentos, Atitudes e Prática em Saúde , Injeções , Humanos , Masculino , Feminino , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , Adulto , Pessoa de Meia-Idade , Fármacos Anti-HIV/uso terapêutico , Fármacos Anti-HIV/administração & dosagem , Inquéritos e Questionários , Preparações de Ação Retardada , Carga Viral , Adesão à Medicação/estatística & dados numéricos , Adesão à Medicação/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , HIV-1/efeitos dos fármacos , Adulto JovemRESUMO
BACKGROUND: Patient preferences toward metabolic bariatric surgery (MBS) remain inadequately explored. OBJECTIVE: This study aims to identify and analyze the key factors influencing the decision-making process of patients considering MBS. SETTING: The research was conducted at the metabolic bariatric surgery clinic of the Medical Research Institute Hospital, Alexandria University, Egypt. METHOD: Patients with obesity were recruited at the clinic before MBS. The surgical profiles were characterized by attributes including treatment method, recovery and reversibility, treatment tenure, expected weight loss, impact on associated medical problems, risk of complication, side effects, dietary changes, and out-of-pocket costs. Patients engaged in an online survey comprising sociodemographic data, Build Your Own (BYO) section, screening section, and choice tournament section. Adaptive choice-based conjoint analysis was employed to discern the preferences. RESULTS: Of the 299 respondents, the surgical profiles with the highest preference involved a loss of 80% of excess weight without any recurrence (14.67 [95% CI, 14.10-15.23]), 0% risk of complication (13.74 [95% CI, 13.03-14.45]), and absence of adverse effects (11.32 [95% CI, 10.73-11.91]). K-mean cluster analysis identified 2 distinct groups: "patients prioritize weight loss" group prioritized excess weight loss, surgery availability, and diet change, whereas "patients prioritize avoidance of complications" group focused on the risk of complication, adverse effects, and the surgery mechanism. CONCLUSIONS: MBS candidates predominantly value weight loss without recurrence, followed by minimization of complication risks and adverse effects, within 3 years postsurgery. Conversely, initial out-of-pocket costs and resolution of medical conditions were deemed the least influential attributes.
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Cirurgia Bariátrica , Preferência do Paciente , Humanos , Feminino , Cirurgia Bariátrica/efeitos adversos , Masculino , Adulto , Preferência do Paciente/estatística & dados numéricos , Pessoa de Meia-Idade , Redução de Peso , Comportamento de Escolha , Obesidade Mórbida/cirurgia , Obesidade Mórbida/psicologia , Egito , Obesidade/cirurgia , Inquéritos e QuestionáriosRESUMO
With the increasing prevalence of diverticulitis, professional guidelines encourage the individualization of treatment. However, the frequency of treatment preferences of both surgeons, and patients, and the resultant impact of that preference on diverticulitis management is underexplored. We reviewed 27 consecutive patient visits of 3 colorectal surgeons at our institution to evaluate factors that drove their treatment, as well as their equipoise for patient randomization into medical or surgical treatments. Using standardized pre- and post-visit questionnaires, we investigated the impact of the clinic visit on treatment recommendations. Our results demonstrate that our surgeons have a practice bias towards complicated disease, and have a preference towards operative management of diverticulitis, in both complicated and uncomplicated disease. This preference was frequently unchanged after clinic visit, which has implications for guiding truly shared decision making, as it continues to be the recommendation.
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OBJECTIVES: Transoral laser microsurgery (TLMS) and radiotherapy (XRT) are mainstays of treatment for early glottic carcinoma (EGC). Here, we investigated case-dependent provider treatment preferences and identify factors which impact decision-making in EGC. METHODS: This cross-sectional survey of laryngologists, head-and-neck surgeons, and radiation oncologists presented five diagrammatic cases of progressively advanced EGC (T1/2, N0). Respondents indicated preference for TLMS or XRT and ranked factors which influenced their recommendation for each case. Analysis utilized descriptive statistics, Fischer's exact tests, and Kruskal-Wallis tests for nonparametric data. RESULTS: A total of 141 complete responses (69.5% laryngologists) were received. Most respondents practiced in academic settings (93.5%) and within multidisciplinary teams (94.0%). Anterior commissure involvement was the most important a priori tumor factor for case-independent treatment recommendation (Likert Scale: 4.22/5), followed by Laterality (Likert Scale: 4.02/5). Across all specialties, TLMS was recommended for unilateral T1a lesions. Laryngologists continued recommending TLMS in T2 lesions (41.0%) more than head-and-neck surgeons (5.0%) and radiation oncologists (0.0%). Across all cases, survival and voice outcomes were the most important clinical factors impacting treatment decisions. Radiation oncologists weighed voice more heavily than laryngologists in more complex presentations of EGC (rank: 1.6 vs. 2.7, Kruskall-Wallis: p < 0.05). CONCLUSIONS: In more complex clinical presentations of EGC, preference for TLMS compared to XRT differed across specialists, despite similar rankings of factors driving these treatment recommendations. This may be driven by differing experiences and viewpoints on case-dependent voice outcomes following TLMS versus XRT, suggesting a need for increased understanding of how tumor location and depth impact voice outcomes. LEVEL OF EVIDENCE: 5 Laryngoscope, 134:3686-3694, 2024.
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Tomada de Decisão Clínica , Glote , Neoplasias Laríngeas , Microcirurgia , Humanos , Neoplasias Laríngeas/terapia , Neoplasias Laríngeas/patologia , Glote/patologia , Glote/cirurgia , Estudos Transversais , Tomada de Decisão Clínica/métodos , Microcirurgia/métodos , Masculino , Padrões de Prática Médica/estatística & dados numéricos , Feminino , Terapia a Laser/métodos , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: Recognizing the limitations of the current pain therapies, the study aimed to explore the unique needs and obstacles related to pain management in Breast Cancer Survivors (BCs) with Chronic Pain (CP). METHODS: 4 focus groups were conducted involving 17 BCs with CP (Mage = 51, SD = 7.99) with varying pain intensities. Thematic analysis was applied to transcribed discussions. FINDINGS: Three key themes emerged: (1) Challenges to pain management, including "Doctor-patients communications barriers" and "Contextual and societal barriers"; (2) Self-management needs, encompassing "Psycho-social support," "Care-related needs," and "Shared decision-making"; (3) Treatment preferences and perceptions of pain management, with subthemes like "Treatment preferences," "Institution preference," and "Decision role perception." CONCLUSIONS: This study emphasizes tailored support systems targeting patient hesitancy, countering pain normalization, and addressing healthcare providers' attitudes. It underscores the importance of integrating caregiver and peer support. Findings advocate refining healthcare provider education, adopting a comprehensive multidisciplinary approach, and strategically incorporating eHealth tools into such care.
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Almost 300 million people are living with chronic hepatitis B infection worldwide and most remain undiagnosed and at risk for liver cancer. In 2015 the World Health Organization (WHO) developed guidelines for the prevention, care, and treatment of persons with chronic hepatitis B and in early 2023 began to work on updating these guidelines. In March 2023, a self-administered, anonymous online survey was launched, aiming to identify patient preferences related to the clinical management of hepatitis B including current management, treatment, and care experiences, preferences regarding engagement with providers, and preferences related to simplifying hepatitis B care access. A sample of 560 individuals living with hepatitis B (self-identified as HBsAg positive) from 76 countries completed the survey. Key findings demonstrated that less than half (49%, N = 268) of participants regularly visited a doctor to check the health of their liver (every 6-12 months), with 37% of participants prescribed antiviral medication by a specialist (82%, N = 167) or general practitioner (13%, N = 26). Participants reported not being actively involved in care decision making with their providers (42%, N = 217), with an overwhelming majority wanting to participate in hepatitis B management and treatment choices (85%, N = 435). Participants provided qualitative and quantitative details using open-ended responses within the survey about challenges with medication affordability and receiving care from a knowledgeable provider. Overall findings demonstrated key gaps in care, management, and treatment access related to hepatitis B: identifying these gaps can be used to identify areas for improvement along the care continuum for viral hepatitis. The survey found a need for the comprehensive simplification of clinical management and health care services related to hepatitis B. A thematic analysis of the open-ended survey responses highlighted major overarching themes including the cost and access burdens associated with hepatitis B management and treatment, and challenges in finding knowledgeable providers. Results from this mixed methods survey were used to inform the WHO hepatitis B guidelines update. Efforts should continue to explore public health approaches to address barriers and facilitators to testing, care, and treatment for people with hepatitis B to improve awareness of hepatitis B and access, care, and treatment among patients and providers.
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Hepatite B Crônica , Hepatite B , Médicos , Humanos , Hepatite B Crônica/diagnóstico , Hepatite B Crônica/tratamento farmacológico , Hepatite B Crônica/epidemiologia , Hepatite B/diagnóstico , Hepatite B/prevenção & controle , Saúde Pública , Organização Mundial da SaúdeRESUMO
Biological inflammatory bowel disease (IBD) medications, once limited to intravenous (IV) administration, can now be administered both via IV and subcutaneously (SC). This study investigates patient preferences, willingness to switch from IV to SC, and associated factors. A questionnaire covering demographics, disease-related inquiries, quality of life, and IBD medication preferences was distributed via email, the Israeli Crohn's Disease and Ulcerative Colitis Foundation, infusion centers, and clinics. From 454 IBD patients (median age: 42 years; 55.7% female), responses revealed a preference for SC every 8 weeks, which is comparable to daily oral dosing. Both options were significantly favored over IV every 8 weeks and SC every 2 weeks, with no statistically significant differences between the latter two. However, among patients who were experienced with both SC and IV administration, a clear preference for SC administration every 2 weeks over IV every 8 weeks surfaced. Among IV-treated patients, 54.5% resisted switching to SC. Key reasons for this included medical staff presence (57.7%), a fear of needles (46.4%), belief in infusion efficacy (37.1%), and longer intervals between infusions (36.1%). Findings suggest that transitioning from IV to SC treatment is challenging due to patient resistance, which is influenced by specific factors. Identifying and addressing these obstacles is crucial for optimizing IBD management.
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BACKGROUND: Studies examining the effects of incorporating patients' preferences into treatment outcomes highlight their impact on crucial aspects such as reduced dropout rates and enhanced effectiveness. Recognizing individuals' rights to participate in decisions about their treatments underscores the importance of studying treatment preferences and the factors influencing these choices. AIM: This study aims to identify treatment preferences (psychological, pharmacological, or combined) among a sample of patients and to discern the psychosocial and clinical factors influencing these preferences. METHODS: A total of 2,133 individuals receiving care at a community mental health unit completed assessments on anxious-depressive symptoms, social and occupational adjustment, and their treatment preference. Data analysis was conducted using SPSS, with descriptive statistics, Chi-square tests, and one-way ANOVA applied. RESULTS: Preferences for treatments were distributed as follows: Combined (49.8%), psychological (33%), and pharmacological (10.6%). Factors such as diagnosis, severity of depressive and anxious symptoms, and functional impact were related to treatment preference with a moderate effect size. Meanwhile, various sociodemographic factors correlated with the selected treatment, though with a weak effect size. CONCLUSIONS: There is a pronounced preference for combined treatments. The significance of psychological treatments is evident, as four out of five participants favored them in their choices. Addressing these preferences calls for an exploration within the broader context of prescription freedom in mental health.
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Preferência do Paciente , Humanos , Feminino , Masculino , Adulto , Preferência do Paciente/psicologia , Pessoa de Meia-Idade , Transtornos Mentais/terapia , Transtornos Mentais/psicologia , Depressão/psicologia , Depressão/terapia , Ansiedade/psicologia , Adulto Jovem , Idoso , Psicoterapia/métodos , Saúde Mental , Adolescente , Terapia CombinadaRESUMO
OBJECTIVE: To assess psychosocial treatment preferences and factors that may affect treatment participation among young adults with a recent concussion and co-occurring anxiety. DESIGN: In-depth, semi-structured individual qualitative interviews, followed by thematic analysis using a hybrid deductive-inductive approach. SETTING: Academic medical center in the US Northeast. PARTICIPANTS: Seventeen young adults (18-24y) who sustained a concussion within the past 3-10 weeks and reported at least mild anxiety (≥5 on the Generalized Anxiety Disorder-7 questionnaire). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Primary outcomes include preferences for program content (eg, topics and skills), delivery modality, format, and barriers and facilitators to participation. RESULTS: We identified 4 domains characterizing participants' perceptions of and preferences for treatment. (1) Program content: Participants preferred a program early after injury that included psychoeducation and coping skills (eg, activity pacing, deep breathing, mindfulness). (2) Therapeutic processes: Participants preferred a person-centered approach in which clinicians normalized anxiety postconcussion and reassured them of recovery. (3) Program logistics: Participants endorsed that a brief, virtual program would be acceptable. They preferred access to program components through multiple modalities (eg, audio, video) and accommodations to manage concussion symptoms. (4) Barriers and facilitators to participation: Barriers included acute concussion symptoms (eg, screen sensitivity), time constraints, and forgetting sessions. Facilitators included a program that is flexible (format, scheduling), personalized (self-chosen mode for reminders, measure of accountability), and accessible (ie, advertising through health care professionals or social media). CONCLUSIONS: Participants need psychosocial support that normalizes their experiences and provides education and coping tools. Treatments should be accessible, flexible, and person centered. Psychosocial treatments meeting these preferences may help optimize the recovery of young adults with recent concussion and anxiety.
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Ansiedade , Concussão Encefálica , Preferência do Paciente , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Adulto Jovem , Concussão Encefálica/psicologia , Concussão Encefálica/reabilitação , Concussão Encefálica/terapia , Preferência do Paciente/psicologia , Adolescente , Ansiedade/etiologia , Adaptação Psicológica , Entrevistas como Assunto , Educação de Pacientes como AssuntoRESUMO
Understanding patient goals and preferences is critical in the context of complex conditions such as chronic pain. This need may be especially pronounced for Black patients, who experience significant health and healthcare disparities. The primary aim of this study was to describe the treatment goals and preferences of Black veterans with chronic musculoskeletal pain who were enrolled in the intervention arm of a randomized controlled trial testing a coaching intervention. In the coaching sessions, participants (n = 106) identified their most important pain-related treatment goals and preferences. Participants' top treatment goals were to improve physical functioning (61%), increase engagement in valued activities (45%), and reduce pain intensity (37%). Most participants (73%) preferred non-pharmacological treatments (eg, physical therapy, exercise, acupuncture, yoga). The 17% of participants who identified medications as a preferred treatment demonstrated higher levels of depression and anxiety compared to those who did not. Approximately 42% and 21% of participants stated a preference to avoid pharmacological and surgical pain treatments, respectively. Black patients with chronic pain prioritize improving physical functioning and pain intensity in service of increasing their engagement in exercise, work, relationships, and leisure activities. Also, in the current study, patients expressed a clear preference for non-pharmacological pain treatments. Future research should investigate ways to improve communication of goals and preferences with providers and facilitate access to non-pharmacological treatments for Black patients with chronic pain. PERSPECTIVE: This article describes the treatment goals and preferences of Black veterans with chronic pain. Most patients prioritized goals to improve physical functioning, pain severity, and participation in valued activities. Patients primarily preferred non-pharmacological treatments. This emphasizes the need for clear communication with Black patients regarding pain-related goals and non-pharmacological treatment options.
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Negro ou Afro-Americano , Dor Crônica , Dor Musculoesquelética , Preferência do Paciente , Veteranos , Humanos , Pessoa de Meia-Idade , Masculino , Dor Crônica/terapia , Dor Crônica/etnologia , Feminino , Dor Musculoesquelética/terapia , Dor Musculoesquelética/etnologia , Negro ou Afro-Americano/etnologia , Idoso , Adulto , Objetivos , Manejo da Dor/métodosRESUMO
Purpose: Overweight and obesity are common in Australia and among the leading risk factors for ill health. Maintained weight loss of >5-10% can prevent and reduce the risk of obesity-related comorbidities. Prescription weight loss medications plus lifestyle interventions can result in additional weight loss compared with lifestyle interventions alone, but these medications are under-prescribed in Australia. Our aim was to develop a greater understanding of the treatment preferences of people with overweight or obesity and the healthcare practitioners (HCPs) who treat them. Participants and Methods: An online survey of Australian adults with overweight or obesity and treating HCPs was conducted in 2020. A discrete choice experiment (DCE) approach was used to determine what is most important to people when evaluating oral and injectable prescription weight loss medications. Participants were asked to choose between three hypothetical treatment alternatives: "Oral pill"; "Subcutaneous injection pen (replaceable needle)"; "Disposable subcutaneous injection pen (hidden needle)"; and an opt-out option ("None of these"). Results: The online survey and DCE were completed by 193 patients and 104 HCPs. For both patients and HCPs, all treatment alternatives (oral, replaceable injection and disposable injection) were preferred over the opt-out. Gastrointestinal side effects, followed by success rate, percentage body weight lost, and cost were the most important attributes to patients. For HCPs, percentage body weight loss was the most important treatment attribute, followed by success rate, gastrointestinal side effects and cost. While most patients reported relatively low needle fear, physicians reported relatively high perceived patient needle fear. Conclusion: Clinician-patient discussions about treatments for weight loss should cover the option of prescription weight loss medications, including injectable medications, which patients may be less apprehensive about than physicians believe. Treatments with a high success rate and low or manageable risk of gastrointestinal side effects may be preferred over alternatives.
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We explored patient front-line treatment preferences in newly diagnosed stage III/IV classic Hodgkin lymphoma (cHL). The CONNECT patient survey, administered online from 30 December 2020 to 1 March 2021, examined preferences overall and by age at diagnosis in 182 adult patients diagnosed with stage III/IV cHL within the past 10 years in the United States. At diagnosis, patients' median age was 36 years; 66% of patients were younger (aged 16-41 years) and 34% older (aged 42-85 years). When asked about initial treatment goals, 74% of patients ranked cure as their first or second goal (86% younger vs. 52% older patients; p < 0.001). At diagnosis, 72% of patients preferred aggressive treatment, and 85% were willing to accept more short-term risks in exchange for a better-working therapy long term. For long-term risks, younger versus older patients were significantly more concerned about second cancers (p < 0.001) and fertility issues (p = 0.007), whereas older patients were more concerned about lung damage (p = 0.028) and infections (p < 0.001). Most patients (94%) reported having a caregiver at some point, but 99% of these patients retained some control of treatment decisions. Collectively, these survey results highlight patient treatment preferences and differences in treatment goals and long-term side effect concerns based on patient age.
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Doença de Hodgkin , Adulto , Humanos , Doença de Hodgkin/tratamento farmacológico , Doença de Hodgkin/patologia , Estudos Transversais , Preferência do Paciente , Inquéritos e QuestionáriosRESUMO
Generalized anxiety disorder (GAD) is a prevalent and chronic mental health condition, associated with considerable individual and economic burden. Despite the availability of effective treatments, many individuals do not access support. The current study explores treatment histories, barriers to help-seeking, and cognitive behavioral therapy (CBT) treatment preferences for individuals with clinically significant GAD symptoms. The utility of Health Belief Model (HBM) in predicting help-seeking is also examined. A cross-sectional design with 127 participants (Mage = 29.17; SD = 11.86; 80.3% female) was used. Sixty-two percent of participants reported previously seeking psychological treatment, and approximately 28% received CBT in the first instance. The most influential treatment barriers were a desire to solve the problem on one's own (M = 1.96, SD = 0.96), followed by affordability (M = 1.75, SD = 1.15) and feeling embarrassed or ashamed (M = 1.75, SD = 1.06). The most preferred treatment modes were in-person individual treatment (M = 7.59, SD = 2.86) followed by remote treatment via videoconferencing (M = 4.31, SD = 3.55). Approximately 38% of the variance in intention to seek treatment was associated with the HBM variables, with perceived benefit of treatment being the strongest predictor. Results have the potential to inform mental health service delivery by reducing treatment barriers and aligning public health campaigns with benefits of psychological treatments.
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Transtornos de Ansiedade , Terapia Cognitivo-Comportamental , Aceitação pelo Paciente de Cuidados de Saúde , Preferência do Paciente , Humanos , Feminino , Masculino , Adulto , Transtornos de Ansiedade/terapia , Preferência do Paciente/psicologia , Estudos Transversais , Terapia Cognitivo-Comportamental/métodos , Pessoa de Meia-Idade , Adulto Jovem , Modelo de Crenças de Saúde , Acessibilidade aos Serviços de SaúdeRESUMO
Chronic lymphocytic leukemia (CLL) therapies differ in efficacy, side effects, route, frequency, and duration of administration. We assessed patient preferences for treatment attributes and evaluated associations with disease stage, treatment line, and socio-demographic characteristics in a cross sectional, observational study conducted at 16 Italian hematology centers. Study visits occurred between February and July 2020; 401 adult patients with CLL (201 Watch and Wait (W&W), 200 treated) participated in a discrete choice experiment (DCE), composed of 8 choices between pairs of treatment profiles with different levels of 5 attributes of currently available CLL treatments (length of response, route and duration of administration, risk of side effects including diarrhea, infections, or organ damage). Health-related quality of life was assessed with the EQ-5D-5L, EORTC QLQ-C30 and QLQ CLL-16. Previously treated patients had longer disease duration (7 vs. 5 years), higher prevalence of serious comorbidities (45.5% vs. 36.2%) and high-risk molecular markers (unmutated IGHV 55.6% vs. 17.1%; TP53 mutation 15.2% vs. 4.0%). Health-related quality of life scores were similar between groups. In the DCE, W&W patients rated "possible occurrence of infections" highest (relative importance [RI] = 36.2%), followed by "treatment and relevant duration" (RI = 28.0%) and "progression-free survival (PFS)" (RI = 16.9%). Previously treated patients rated "treatment and relevant duration" highest (RI = 33.3%), followed by "possible occurrence of infections" (RI = 28.8%), "possible occurrence of organ damage" (RI = 19.4%), and "PFS" (RI = 9.8%). Concern over infection was rated highest overall; unexpectedly PFS was not among the most important criteria in either group, suggesting that the first COVID-19 pandemic wave may have influenced patient preferences and concerns about CLL therapy options.
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Leucemia Linfocítica Crônica de Células B , Adulto , Humanos , Leucemia Linfocítica Crônica de Células B/tratamento farmacológico , Leucemia Linfocítica Crônica de Células B/genética , Preferência do Paciente , Qualidade de Vida , Estudos Transversais , PandemiasRESUMO
Background: Despite the extensive literature on facilitating advance care planning (ACP) with patients with serious illnesses, opportunities to include surrogates or family caregivers are overlooked. The research objective was to examine whether previous medical decision-making involvement for a loved one is associated with one's own ACP conversations with family and the potential mediating effect of knowledge of a loved one's end-of-life treatment preferences. Methods: This study employed a cross-sectional design using data from the 2016 Kaiser Family Foundation/The Economist Four-Country Survey on Aging and End-of-Life Medical Care. The sample included 627 US adults who completed the survey and were involved in making medical decisions for a loved one in the past. Multiple binary logistic regression and linear regression models were established for mediation analyses. Results: Participants in our nationally derived sample were largely confident in their knowledge of a deceased loved one's end-of-life treatment preferences. 66.8% of the sample had ACP conversations with family. The involvement in a loved one's medical decision making was significantly associated with higher odds of having ACP conversations with family (OR = 1.93, P = .01), but this relationship was significantly mediated by knowledge of one's end-of-life treatment preferences (b = .31, Boot CI = .12-.49). Conclusions: Previous experience in making medical decisions for a loved one may facilitate one's own ACP behavior through knowing a loved one's end-of-life treatment preferences. Clinicians in end-of-life settings are uniquely positioned to engage family members who were involved in medical decision-making for others before in ACP.
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Planejamento Antecipado de Cuidados , Assistência Terminal , Adulto , Humanos , Estudos Transversais , Tomada de Decisões , MorteRESUMO
BACKGROUND: Patients with Crohn's disease (CD) are at risk of developing complications such as perianal fistulas. Patients with Crohn's perianal fistulas (CPF) are affected by fecal incontinence (FI), bleeding, pain, swelling, and purulent perianal discharge, and generally face a higher treatment burden than patients with CD without CPF. AIM: To gain insights into the burden of illness/quality of life in patients with CPF and their treatment preferences and satisfaction. METHODS: This cross-sectional observational study was conducted in patients with CD aged 21-90 years via a web-enabled questionnaire in seven countries (April-August 2021). Patients were recruited into three cohorts: Cohort 1 included patients without perianal fistulas; cohort 2 included patients with perianal fistulas without fistula-related surgery; and cohort 3 included patients with perianal fistulas and fistula-related surgery. Validated patient-reported outcome measures were used to assess quality of life. Drivers of treatment preferences were measured using a discrete choice experiment (DCE). RESULTS: In total, 929 patients were recruited (cohort 1, n = 620; cohort 2, n = 174; cohort 3, n = 135). Short Inflammatory Bowel Disease Questionnaire scores were worse for patients with CPF (cohorts 2 and 3) than for those with CD without CPF (cohort 1): Mean score 3.8 and 3.7 vs 4.1, respectively, (P < 0.001). Similarly, mean Revised FI and FI Quality of Life scores were worse for patients with CPF than for those with CD without CPF. Quality of Life with Anal Fistula scores were similar in patients with CPF with or without CPF-related surgery (cohorts 2 and 3): Mean score 41 and 42, respectively. In the DCE, postoperative discomfort and fistula healing rate were the most important treatment attributes influencing treatment choice: Mean relative importance 35.7 and 24.7, respectively. CONCLUSION: The burden of illness in CD is significantly higher for patients with CPF and patients rate lower postoperative discomfort and higher healing rates as the most desirable treatment attributes.
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AIMS: Health care providers (HCPs) treating multiple sclerosis (MS) in clinical practice have numerous disease-modifying therapies (DMTs) to consider when evaluating treatment options. This study assessed the treatment preferences of HCPs in the United States, both direct (explicit) and derived (explicit and implicit), when selecting MS DMTs based on clinical and logistical treatment attributes. MATERIALS AND METHODS: A 45-minute web-enabled questionnaire was administered to HCPs who manage patients with MS to assess the importance of treatment attributes. HCPs were recruited through an online panel. This study examined treatment attributes relevant to treatment decisions in MS, with a focus on the burden to HCPs and their staff, as well as HCP attitudes toward various aspects of MS care such as diagnosis, treatment prioritization, and ease of initiating or switching DMTs. The study also employed a discrete choice experiment (DCE) to assess direct and derived treatment preferences. RESULTS: The study recruited 145 HCPs. Direct assessments (a score of greater than 7.0 was considered important) suggested that safety (mean importance rating = 7.8/9) and relative risk reduction in relapses (7.6/9) and disability progression (7.5/9) were most important when selecting DMTs. In contrast, derived importance from the DCE (higher points corresponding to greater importance) suggested that logistical attributes such as dose frequency (mean relative attribute importance = 17.5%), dose titration (10.3%), formulation (9.4%), and volume of calls (9.1%) were important considerations, along with efficacy (16.5%), safety (9.8%), and gastrointestinal tolerability (9.4%). LIMITATIONS: This study may have been subject to selection bias due to the application of eligibility criteria, the convenient sampling recruitment methodology, and recruitment of HCPs with internet access. CONCLUSION: In the direct assessment, clinical attributes were chosen as the most important treatment attributes by HCPs. However, in the DCE, derived treatment decisions rated logistical attributes as also being as important in treatment choice.
In this study, researchers aimed to understand what multiple sclerosis (MS) neurologists, nurse practitioners, and physician assistants think is most important when choosing medicines for their patients. They surveyed 145 health care providers (HCPs) in the United States for this study. The HCPs reported that safety and reducing the risk of relapses and disability were most important when selecting medicines. Additionally, the researchers used a method called a discrete choice experiment to determine the relative importance of medication characteristics to HCPs. They found that additional factors, such as how often the medicine needs to be taken, how it is given, and how easy it is to use, were also very important. The study may not represent the opinions of all HCPs due to the number of participants and participation criteria.
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Esclerose Múltipla , Humanos , Estados Unidos , Esclerose Múltipla/tratamento farmacológico , Pessoal de Saúde , Inquéritos e Questionários , Preferência do Paciente , RecidivaRESUMO
Purpose: This study assessed and compared preferences for treatment attributes of maintenance therapies post-hematopoietic stem cell transplantation (HSCT) in patients with acute myeloid leukemia (AML) and in physicians who treat these patients. Patients and Methods: Patients with AML post HSCT and physicians from the United States, United Kingdom, Canada, and Australia (physicians only) completed a web-based discrete choice experiment (DCE). The DCE used inputs identified via a targeted literature review and qualitative interviews to ascertain relevant treatment attributes and associated levels. Six treatment attributes were selected (chance of 2-year relapse-free survival, quality of life [QoL], risk of serious infections, risk of nausea, chance of achieving transfusion independence, and duration of hospitalization annually), each with three or four levels. The experimental design included 36 choice tasks that presented a pair of hypothetical treatment profiles with varying attribute levels; participants chose a preferred treatment for each choice task. Choice tasks were divided into three blocks of 12 tasks each in the patient survey and 4 blocks of 9 tasks each in the physician survey; survey participants were randomly assigned to one of the blocks. Random parameter logit regression models were used to assess the impact of stated attributes on preferences for maintenance treatment post HSCT. Results: Surveys from 84 patients and 149 physicians were assessed. For patients, QoL was the most important attribute, followed by duration of hospitalization and chance of 2-year relapse-free survival. For physicians, chance of 2-year relapse-free survival was the most important attribute, followed by QoL and risk of serious infections. Conclusion: Differences in how patients and physicians valued post-HSCT maintenance treatment attributes were identified. These differences suggest that patient-centered decision-making may help physicians choose maintenance treatments for patients with AML post HSCT that better meet their treatment needs and improve their treatment satisfaction.
RESUMO
OBJECTIVE: Identify patient experience and preference towards thrombopoietin-receptor agonists (TPO-RAs) in treatment of immune thrombocytopenia (ITP) in the Netherlands. METHODS: The Thrombopoietin-Receptor Agonist Patient experience (TRAPeze) survey used a discrete choice experiment (DCE) to elicit patient preferences and a patient burden survey (PBS) to evaluate the clinical and social impact of ITP. TRAPeze collected responses from 6th October to 19th November 2021. RESULTS: Seventy-six respondents completed the DCE: treatment preference appeared to be driven by method of administration (odds ratio [OR] 4.33; 95% confidence interval [CI] 2.88-6.52), frequency of dosing (OR 2.33; 95% CI 1.86-2.92) and drug-food interactions (OR 1.91; 95% CI 1.54-2.37). Respondents preferred therapies delivered orally over subcutaneous injection (OR 4.22; 95% CI 2.76-6.46), dosed once weekly over once daily (OR 2.37; 95% CI 1.58-3.54) and without food restrictions over with restrictions (OR 1.90; 95% CI 1.52-2.38). Sixty-nine respondents completed the DCE and PBS (mean [range] age 53 [19-83] years, 65% female). Seven incomplete PBS responses were excluded from analysis. Respondents were currently, or most recently, receiving eltrombopag (n = 43) or romiplostim (n = 26), of which 30% (n = 21/69) had previously received another TPO-RA. Loss (29%, n = 6/21) and lack (29%, n = 6/21) of response were the most common reasons for switching TPO-RA. Only 28% (n = 18/65) of respondents felt their TPO-RA increased energy levels. CONCLUSION: Patients preferred therapies delivered orally, dosed less frequently and without food restrictions. QoL of ITP patients on TPO-RAs can be improved; the burden analyses presented can inform future efforts towards this.