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BACKGROUND: Feasibility of exercise in patients with metastatic cancer is still a challenge. This study aimed to determine the feasibility and preliminary efficacy of an exercise intervention based on a patient-preferred delivery mode in patients affected by metastatic cancer. MATERIALS AND METHODS: Forty-four patients with a confirmed diagnosis of metastatic cancer were recruited in a 3-month exercise program. Whereas the exercise program consisted of aerobic and resistance activities performed twice a week, the participants may choose the mode of delivery: home based, personal training, or group based. The primary endpoint was the feasibility, defined by recruitment rate, attendance, adherence, dropout rate, tolerability (comparing the session RPE with the target RPE), and safety (using the Common Terminology Criteria for Adverse Events, version 5.0). Secondary endpoints included cardiorespiratory fitness (six minutes walking test), muscle strength (handgrip strength test and isometric leg press test), flexibility (the back scratch and chair sit and reach tests), anthropometric parameters (body mass index and waist-hip ratio), quality of life (EORTC QLQ C-30 questionnaire), and amount of physical exercise (Godin's Shepard Leisure Time Exercise Questionnaire). Descriptive statistics, Student t test, and Wilcoxon signed rank test were used to analyze data. RESULTS: The study recruitment rate was 81%. Out of 44 recruited patients, 28 chose the personal training program, 16 chose the home-based program, and none chose the group-based program. Nine dropouts occurred (20%), 6 in the personal training program, and 3 in the home-based intervention. The median attendance rate was 92%, adherence was 88%, tolerability was 100%, and 9 nonsevere adverse events were registered during the exercise sessions. An increase in cardiorespiratory fitness (Pâ <â .001) and flexibility (Pâ =â .011 for chair sit and reach; Pâ =â .040 for back scratch) was observed at the end of the intervention, while no changes in anthropometric values and muscle strength were detected. Different quality-of-life domains were improved following the intervention, including physical (Pâ =â .002), emotional (Pâ <â .001), and role functioning (Pâ =â .018), fatigue (Pâ =â .030), and appetite loss (Pâ =â .005). CONCLUSION: A 3-month exercise program based on a patient-preferred delivery mode is feasible in patients with metastatic cancer and may improve physical function and quality of life. TRIAL REGISTRATION: NCT04226508.
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Terapia por Ejercicio , Estudios de Factibilidad , Neoplasias , Calidad de Vida , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ejercicio Físico/fisiología , Terapia por Ejercicio/métodos , Fuerza Muscular/fisiología , Metástasis de la Neoplasia , Prioridad del Paciente/estadística & datos numéricosRESUMEN
BACKGROUND: Effective techniques for eliciting patients' preferences regarding their own care, when treatment options offer marginal gains and different risks, is an important clinical need. We sought to evaluate the association between patients' considerations of the time burdens of care ("time toxicity") with decisions about hypothetical treatment options. METHODS: We conducted a secondary analysis of a multicenter, mixed-methods study that evaluated patients' attitudes and preferences toward palliative-intent cancer treatments that delayed imaging progression-free survival (PFS) but did not improve overall survival (OS). We classified participants based on if they spontaneously volunteered one or more consideration of time burdens during qualitative interviews after treatment trade-off exercises. We compared the percentage of participants who opted for treatments with no PFS gain, some PFS gain, or who declined treatment regardless of PFS gain (in the absence of OS benefit). We conducted narrative analysis of themes related to time burdens. RESULTS: The study cohort included 100 participants with advanced cancer (55% women, 63% age > 60 years, 38% with gastrointestinal cancer, and 80% currently receiving cancer-directed treatment. Forty-six percent (46/100) spontaneously described time burdens as a factor they considered in making treatment decisions. Participants who mentioned time (vs not) had higher thresholds for PFS gains required for choosing additional treatments (P value .004). Participants who mentioned time were more likely to decline treatments with no OS benefit irrespective of the magnitude of PFS benefit (65%, vs 31%). On qualitative analysis, we found that time burdens are influenced by several treatment-related factors and have broad-ranging impact, and illustrate how patients' experiences with time burdens and their preferences regarding time influence their decisions. CONCLUSIONS: Almost half of participating patients spontaneously raised the issue of time burdens of cancer care when making hypothetical treatment decisions. These patients had notable differences in treatment preferences compared to those who did not mention considerations of time. Decision science researchers and clinicians should consider time burdens as an important attribute in research and in clinic.
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OBJECTIVES: This review sought to identify the qualitative methods and techniques that researchers have used in the past decade to develop attributes and inform health-related discrete choice experiments (DCEs) surveys from a patient perspective. METHODS: The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for reporting systematic reviews. An adapted appraisal tool following guidelines for reporting qualitative research for quantitative instruments and criteria for attribute development in DCEs was applied for quality assessment and data extraction. A narrative approach was used to synthesize data. This examination included consideration of issues pertaining to sampling, data collection, data analysis, attribute list reduction, wording, methodological adaptations to capture patient preferences, and testing the pre-experimental design decisions of the DCE survey. RESULTS: Of 8505 articles identified for abstract screening, 680 were included for full-text screening, 36 of which met the inclusion criteria. Practices to improve methodological robustness included pre-data collection materials to inform instruments, data collection methods specific for decision-making scenarios, purposeful selection of data analysis methods to address the research question, and participants' involvement in reducing the list of attributes. Examples of methodological adaptations for patients were noted. CONCLUSIONS: DCEs have the potential to become a mixed-method approach in which the qualitative phase informs a reduced list of attributes for a survey, serves the predesign decisions of the experiment by testing trade-offs, overlapping, understandability, face, and content validity and provides explanations of the quantitative results. Establishing guidelines for using qualitative methods for DCE attribute development may help to broadly enhance the methodological robustness of DCEs.
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BACKGROUND: This study aims to provide greater insight into the current decision-making process on diagnostic testing for dementia by exploring the expectations, needs and experiences of patients with memory complaints, significant others and general practitioners (GPs). METHODS: We performed semi-structured interviews with patients (>60 years) who consulted their GP on memory complaints, significant others and GPs. Participants were recruited until data saturation was reached in thematic analysis of interview transcripts. RESULTS: We performed 51 interviews (patients n = 20, significant others n = 15, GPs n = 16). Thematic analysis revealed four themes: (i) 'drivers to (not) testing', i.e. need to act on symptoms, beliefs on the necessity and expected outcomes of diagnostic testing; (ii) 'patient preferences and context are critical in the actual decision', i.e. in the actual decision-making process interpretation of symptoms, GPs' desire to meet patient preferences, social context and healthcare system dynamics guided the decision; (iii) 'need for individualised communication in the decision-making process', i.e. for patients feeling heard was a prerequisite for decision-making and GPs tailored communication strategies to individual patients and (iv) 'GP practice and barriers to shared decision-making (SDM)', i.e. although GPs value SDM in the decision on diagnostic testing for dementia, patients express limited awareness of the decision and options at stake. CONCLUSIONS: Decision-making on diagnostic testing for dementia is a multifactorial and preference-guided process for all involved stakeholders, but decisions are often not explicitly jointly made. Development of patient decision aids could facilitate better involvement and more informed choices by patients.
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Demencia , Médicos Generales , Humanos , Comunicación , Toma de Decisiones Conjunta , Emociones , Demencia/diagnósticoRESUMEN
BACKGROUND: Subacromial pain syndrome (SAPS), the most common cause of shoulder pain, can be treated through different treatments with similar effects. Therefore, in terms of deciding on the right treatment fit, patient preferences need to be understood. We aimed to identify treatment characteristics that delineate interventions (attributes) and corresponding sets of specific categorical range (attribute-levels) for SAPS. METHODS: This multiple method study systematically reviewed both qualitative and quantitative studies on patient preferences for treatment of SAPS, which informed semi-structured interviews with nine clinicians and 14 patients. The qualitative data from the interviews was analyzed using the framework analysis formulated by Ritchie and Spencer. Attributes and attribute levels of the systematic review and interviews were summarized and categorized. RESULTS: The search resulted in 2.607 studies, 16 of which met the eligibility criteria. The review identified 120 potential attributes, which were synthesized into 25 potential attributes. Fourteen new potential attributes were identified through the interviews, equaling a total of 39 attributes across 11 categories. Levels for 37 attributes were identified through systematic review and interviews, we were unable to identify levels for two attributes. CONCLUSIONS: This study identified attributes and attribute levels for the treatment of SAPS. There was a discrepancy in the frequency of the represented attributes between the literature and interviews. This study may improve the understanding of patient preferences for the treatment of SAPS and help individualize care. Our study informs a future discrete choice experiment and supports shared decision-making in clinical practice.
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PURPOSE: The diagnostic workup for assessment of sleep disorders commonly involves overnight testing to assess sleep patterns and pathological events. So far, little is known about preferences for provision of home sleep tests to patients with sleep disorders. This study aims to close this gap by eliciting preferences for home sleep testing using a discrete choice experiment (DCE). METHODS: A DCE with seven attributes of at-home sleep testing and three levels per attribute was developed using a fractional factorial design. Patients with and without previous sleep testing experience were recruited from two large sleep centers in Germany. Coefficients for attribute levels were calculated using a conditional logit model to estimate their influence on choice decisions and calculate the relative importance of each attribute. RESULTS: 305 patients (54.5 ± 13,1 years, 65.3% male) were enrolled, and 288 surveys with complete data included for analysis. Attributes with greatest relevance were Waiting time to discuss sleep study results; Waiting time to conduct sleep study, and Sleep quality during measurement. Of lowest importance was Diagnostic accuracy of sleep study, followed by Effort to apply sleep study device. Significant heterogeneity in choice behavior was found, including differences by gender, willingness-to-pay for sleep studies, and previous experience with sleep studies. Preferred location for conducting sleep testing was at-home in 50.7% and in-lab in 46.9%. CONCLUSIONS: Preferences and relative importance of home sleep test attributes vary among different subgroups. Considering those preferences can be important for clinicians and policymakers when designing care pathways and planning of testing policies for sleep disorders.
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BACKGROUND: Food insecurity is a public health concern that has profound impact on physical and mental health, and on social well-being. Pregnancy is a period in which food insecurity is likely to be particularly deleterious, due to the serious impact on both mother and child. Food insecurity is not routinely screened in antenatal healthcare settings, and the preferences of pregnant women regarding food insecurity screening and support are poorly understood. This study aimed to determine the views and preferences of food-insecure pregnant women regarding food insecurity screening and support within antenatal healthcare. METHODS: This qualitative descriptive study used face-to-face semi-structured interviews, conducted in February and March 2023, to gain the views of purposively sampled food-insecure, pregnant women in Melbourne, Australia. Food insecurity was evidenced by an affirmative response to at least one of three assessment items in a screening questionnaire. Qualitative content analysis was conducted to summarise the views and preferences of women. RESULTS: Nineteen food-insecure pregnant women were interviewed. Three themes were identified: (1) acceptability of being screened for food insecurity, (2) concerns about the consequences of disclosure and (3) preferences regarding food insecurity screening and supportive strategies that could be offered within an antenatal healthcare setting. CONCLUSION: Women were accepting of food insecurity screening being conducted within routine healthcare. Women identified potential benefits of routine screening, such as feeling supported by their clinician to have a healthy pregnancy and less pressure to voluntarily ask for food assistance. Women gave suggestions for the implementation of food insecurity screening to optimise their healthcare experience, maintain their dignity and feel able to disclose within a safe and caring environment. These results indicate that food insecurity screening in the antenatal setting is likely to have support from pregnant women and is urgently needed in the interest of promoting optimal nutrition for women and children. PATIENT CONTRIBUTION: Pregnant women with lived experience of food insecurity were purposively sampled to obtain their insights regarding screening and support within a pregnancy healthcare setting. Member-checking occurred following data collection, whereby all participants were offered the opportunity to review their interview transcript to ensure trustworthiness of the data.
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Inseguridad Alimentaria , Mujeres Embarazadas , Atención Prenatal , Investigación Cualitativa , Humanos , Femenino , Embarazo , Adulto , Mujeres Embarazadas/psicología , Australia , Entrevistas como Asunto , Encuestas y Cuestionarios , Apoyo Social , Prioridad del Paciente , Abastecimiento de AlimentosRESUMEN
BACKGROUND: Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision-making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development. AIM: This study aimed to explore patient perspectives related to a SDM tool for lung cancer screening using a qualitative approach. METHODS: We elicited patient perspectives by showing a provider-facing SDM tool. Focus group interviews that ranged in duration from 1.5 to 2 h were conducted with 23 individuals with high risk for lung cancer. Data were interpreted inductively using thematic analysis to identify patients' thoughts on and desires for a patient-facing SDM tool. RESULTS: The findings highlight that patients would like to have educational information related to lung cancer screening. We identified several key themes to be considered in the future development of patient-facing tools: barriers to acceptance, preference against screening and seeking empowerment. One further theme illustrated effects of patient-provider relationship as a limitation to meeting lung cancer screening information needs. Participants also noted several suggestions for the design of technology decision aids. CONCLUSION: These findings suggest that patients desire additional information on lung cancer screening in advance of clinical visits. However, there are several issues that must be considered in the design and development of technology to meet the information needs of patients for lung cancer screening decisions. PATIENT OR PUBLIC CONTRIBUTION: Patients, service users, caregivers or members of the public were not involved in the study design, conduct, analysis or interpretation of the data. However, clinical experts in health communication provided detailed feedback on the study protocol, including the focus group approach. The study findings contribute to a better understanding of patient expectations for lung cancer screening decisions and may inform future development of tools for SDM.
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Toma de Decisiones Conjunta , Detección Precoz del Cáncer , Grupos Focales , Neoplasias Pulmonares , Participación del Paciente , Investigación Cualitativa , Humanos , Neoplasias Pulmonares/diagnóstico , Detección Precoz del Cáncer/psicología , Femenino , Masculino , Persona de Mediana Edad , AncianoRESUMEN
BACKGROUND: In response to climate change (CC), medicine needs to consider new aspects in health counselling of patients. Such climate-sensitive health counselling (CSHC) may include counselling patients on preventing and coping with climate-sensitive diseases or on leading healthy and climate-friendly lifestyles. This study aimed to identify previous participation in and preferences for CSHC as well as associated sociodemographic and attitudinal factors among the general public in Germany. METHODS: We conducted a cross-sectional study in a population-based online panel in five German federal states (04-06/2022). We performed descriptive statistics and multivariable regression analysis to assess prior participation in CSHC and content preferences regarding CSHC, as well as associations between sociodemographic variables and general preference for CSHC. RESULTS: Among 1491 participants (response rate 47.1%), 8.7% explicitly reported having participated in CSHC, while 39.9% had discussed at least one CSHC-related topic with physicians. In the studied sample, 46.7% of participants would like CSHC to be part of the consultation with their physician, while 33.9% rejected this idea. Participants aged 21 to 40 years (versus 51 to 60), individuals alarmed about CC (versus concerned/cautious/disengaged/doubtful/dismissive), and those politically oriented to the left (vs. centre or right) showed greater preference for CSHC in the multivariable regression model. Most participants wanted to talk about links to their personal health (65.1%) as opposed to links to the health of all people (33.2%). CONCLUSIONS: Almost half of the participants in this sample would like to receive CSHC, especially those who are younger, more alarmed about CC and more politically oriented to the left. More research and training on patient-centred implementation of CSHC is needed.
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Cambio Climático , Humanos , Estudios Transversales , Alemania , Femenino , Masculino , Adulto , Persona de Mediana Edad , Adulto Joven , Consejo/estadística & datos numéricos , Anciano , Prioridad del Paciente/estadística & datos numéricos , Prioridad del Paciente/psicología , Adolescente , Encuestas y CuestionariosRESUMEN
BACKGROUND: Informal care plays an essential role in managing the COVID-19 pandemic. Expanding health insurance packages that reimburse caregivers' services through cost-sharing policies could increase financial resources. Predicting payers' willingness to contribute financially accurately is essential for implementing such a policy. This study aimed to identify the key variables related to WTP/WTA of COVID-19 patients for informal care in Sanandaj city, Iran. METHODS: This cross-sectional study involved 425 COVID-19 patients in Sanandaj city, Iran, and 23 potential risk factors. We compared the performance of three classifiers based on total accuracy, specificity, sensitivity, negative likelihood ratio, and positive likelihood ratio. RESULTS: Findings showed that the average total accuracy of all models was over 70%. Random trees had the most incredible total accuracy for both patient WTA and patient WTP(0.95 and 0.92). Also, the most significant specificity (0.93 and 0.94), sensitivity (0.91 and 0.87), and the lowest negative likelihood ratio (0.193 and 0.19) belonged to this model. According to the random tree model, the most critical factor in patient WTA were patient difficulty in personal activities, dependency on the caregiver, number of caregivers, patient employment, and education, caregiver employment and patient hospitalization history. Also, for WTP were history of COVID-19 death of patient's relatives, and patient employment status. CONCLUSION: Implementing of a more flexible work schedule, encouraging employer to support employee to provide informal care, implementing educational programs to increase patients' efficacy, and providing accurate information could lead to increased patients' willingness to contribute and finally promote health outcomes in the population.
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COVID-19 , Aprendizaje Automático , Humanos , COVID-19/epidemiología , Estudios Transversales , Masculino , Femenino , Irán , Persona de Mediana Edad , Adulto , Cuidadores/psicología , Cuidadores/economía , Financiación Personal , SARS-CoV-2 , Participación del Paciente , AncianoRESUMEN
This research sought to assess whether and how patient preference (PP) data are currently used within health technology assessment (HTA) bodies and affiliated organizations involved in technology/drug appraisals and assessments. An exploratory survey was developed by the PP Project Subcommittee of the HTA International Patient and Citizen Involvement Interest Group to gain insight into the use, impact, and role of PP data in HTA, as well as the perceived barriers to its incorporation. Forty members of HTA bodies and affiliated organizations from twelve countries completed the online survey. PP data were reported to be formally considered as part of the HTA evidence review process by 82.5 percent of the respondents, while 39.4 percent reported that most of the appraisals and assessments within their organization in the past year had submitted PP data. The leading reason for why PP data were not submitted in most assessments was time/resource constraints followed by lack of clarity on PP data impact. Participants reported that PP data had a moderate level of influence on the deliberative process and outcome of the decision, but a higher level of influence on the decision's quality. Most (81.8 percent) felt patient advocacy groups should be primarily responsible for generating and submitting this type of evidence. Insights from the survey confirm the use of PP data in HTA but reveal barriers to its broader and more meaningful integration. Encouragingly, participants believe obstacles can be overcome, paving the way for a second phase of research involving in-depth collaborative workshops with HTA representatives.
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Toma de Decisiones , Evaluación de la Tecnología Biomédica , Humanos , Prioridad del Paciente , Encuestas y CuestionariosRESUMEN
INTRODUCTION: The importance of identifying how patients choose their healthcare providers has grown with the prevalence of consumer-centric health insurance plans. There is currently a lack of studies exploring the factors associated with how patients select their hip and knee joint arthroplasty surgeons. The purpose of this study was to determine how patients find their arthroplasty providers and the relative importance of various arthroplasty surgeon characteristics. METHODS: An electronic mail survey was sent to 3522 patients who had visited our institution for an arthroplasty surgeon office visit between August 2022 and January 2023. The survey consisted of multiple-choice questions, which aimed to inquire about the patients' referral sources for their current arthroplasty surgeon. In addition, patients were requested to rate the significance of 22 surgeon-related factors, on a scale of 1 (Not Important At All) to 5 (Very Important), in choosing their arthroplasty surgeon. RESULTS: Of the 3522 patients that received the survey, 538 patients responded (15.3%). The most common referral sources were physician referral (50.2%), family/friend referral (27.7%), and self-guided research (24.5%). Of those that were referred by a physician, 54.4% of respondents were referred by another orthopaedic provider. Patients rated board certification (4.72 ± 0.65), in-network insurance status (4.66 ± 0.71), fellowship training (4.50 ± 0.81), bedside manner/personality (4.32 ± 0.86), and facility appearance (4.26 ± 0.81) as the five most important factors in picking an arthroplasty surgeon. Television (1.42 ± 0.83), print (1.50 ± 0.88), and online (1.58 ± 0.93) advertisements, along with social media presence (1.83 ± 1.08), and practice group size (2.97 ± 1.13) were rated as the five least important factors. CONCLUSION: Patients are most likely to select an arthroplasty surgeon based on referral from other physicians, namely orthopedic surgeons, in addition to board certification status, in-network insurance, and fellowship training. Overall, these findings highlight the importance of physician credentials and reputation within the orthopaedic community in order to attract and retain patients.
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Artroplastia de Reemplazo de Cadera , Artroplastia de Reemplazo de Rodilla , Cirujanos Ortopédicos , Humanos , Artroplastia de Reemplazo de Cadera/estadística & datos numéricos , Artroplastia de Reemplazo de Rodilla/estadística & datos numéricos , Masculino , Femenino , Persona de Mediana Edad , Cirujanos Ortopédicos/estadística & datos numéricos , Anciano , Encuestas y Cuestionarios , Derivación y Consulta/estadística & datos numéricos , AdultoRESUMEN
PURPOSE: Clinical practice guidelines recommend altering neurotoxic chemotherapy treatment in patients experiencing intolerable chemotherapy-induced peripheral neuropathy (CIPN). The primary objective of this survey was to understand patient's perspectives on altering neurotoxic chemotherapy treatment, including their perceptions of the benefits of preventing irreversible CIPN and the risks of reducing treatment efficacy. METHODS: A cross-sectional online survey was distributed via social networks to patients who were currently receiving or had previously received neurotoxic chemotherapy for cancer. Survey results were analyzed using descriptive statistics and qualitative analysis. RESULTS: Following data cleaning, 447 participants were included in the analysis. The median age was 57 years, 93% were white, and most were from the UK (53%) or USA (38%). Most participants who were currently or recently treated expected some CIPN symptom resolution (86%), but 45% of those who had completed treatment more than a year ago reported experiencing no symptom resolution. Participants reported that they would discontinue chemotherapy treatment for less severe CIPN if they knew their symptoms would be permanent than if symptoms would disappear after treatment. Most patients stated that the decision to alter chemotherapy or not was usually made collaboratively between the patient and their treating clinician (61%). The most common reason participants were reluctant to talk with their clinician about CIPN was fear that treatment would be altered. Participants noted a need for improved understanding of CIPN symptoms and their permanence, better patient education relating to CIPN prior to and after treatment, and greater clinician understanding and empathy around CIPN. CONCLUSIONS: This survey highlights the importance of shared decision-making, including a consideration of both the long-term benefits and risks of altering neurotoxic chemotherapy treatment due to CIPN. Additional work is needed to develop decision aids and other communication tools that can be used to improve shared decision making and help patients with cancer achieve their treatment goals.
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Antineoplásicos , Neoplasias , Enfermedades del Sistema Nervioso Periférico , Humanos , Persona de Mediana Edad , Antineoplásicos/uso terapéutico , Estudios Transversales , Enfermedades del Sistema Nervioso Periférico/diagnóstico , Neoplasias/tratamiento farmacológico , Resultado del Tratamiento , Calidad de VidaRESUMEN
INTRODUCTION: The potential benefits from digitalisation processes will only be fully realised if the conceptual challenges they uncover are accepted and addressed, alongside the technical ones such as interoperability. Will 'computable' clinical guidelines be compatible with personalised care if the definition of the relevant disease embeds preferences that pre-empt those of the individual patient? METHOD: As a case study we investigated the definition of diabetes in glycaemic management guidelines. RESULT: The dominant component of its definition - HbA1c ≥6.5% - embeds the consensus preference judgement of a 2009 International Expert Committee. DISCUSSION: This preference-sensitive threshold for the diagnosis of diabetes has subsequently been endorsed in many guidelines relating to glycaemic management, though there are signs of awareness and concern with its implications. CONCLUSION: Those seeking to digitalise guidelines by making them 'computable' need to acknowledge and address their inbuilt preference-sensitivity - if they wish to further care that respects patient's preferences.
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Diabetes Mellitus , Guías de Práctica Clínica como Asunto , Medicina de Precisión , Humanos , Diabetes Mellitus/terapia , Hemoglobina Glucada , Registros Electrónicos de SaludRESUMEN
Background: Fecal microbiota transplantation (FMT) is a promising treatment for active ulcerative colitis (UC). Understanding patient preferences can identify treatment features that may impact treatment decisions, improve shared decision-making, and contribute to patient-centered care, which is especially important in the context of novel treatments like FMT. Objectives: We aimed to quantify preferences for active UC treatments, specifically FMT and biologics, and identify patient characteristics associated with different preference patterns. Design: This is a cross-sectional survey study. Methods: We administered a discrete choice experiment (DCE) survey to elicit preferences in a sample of Canadian adults with UC. DCE data were analyzed using a main-effects mixed logit model and used to predict uptake of hypothetical scenarios reflecting alternative combinations of treatment features. Latent class modeling identified heterogeneity in patient preference patterns. Results: Participants' (n = 201) mean age was 47.1 years (SD: 14.5 years), 58% were female, and most (84%) had at least some post-secondary education. Almost half were willing to undergo FMT. When considering treatments for active UC, the most important attributes were chance of remission and severity of rare unknown side effects. All else equal, participants were most likely to uptake treatment that involves oral capsules/pills. Participants in the class with the highest utility for chance of remission were younger, had more severe disease, and 58% indicated that they would be willing to undergo FMT. Conclusion: We identified characteristics of UC patients who are more likely to be interested in FMT using preference elicitation methods. Patient-centered care can be enhanced by knowing which patients are more likely to be interested in FMT, potentially improving satisfaction with and adherence to treatments for active UC to maximize the effectiveness of treatment while considering heterogeneity in patient preferences.
Background and aims: Fecal microbiota transplantation (FMT) is a promising new treatment for active ulcerative colitis. Questions remain around the benefits and risks of FMT treatment for patients with ulcerative colitis. Understanding how patients weigh the treatment features and how treatment features influence their decisions may improve shared decision-making and contribute to patient-centered care, which is especially important for novel treatments like FMT.Using an experimentally designed survey, we aimed to:1. Elicit patient preferences for features of active ulcerative colitis treatments, specifically FMT and biologics; and,2. Identify patient characteristics associated with different preference patterns. Results: We found that younger patients with more severe disease are more likely to try FMT for the treatment of active ulcerative colitis. Oral capsules/pills are the preferred mode of treatment administration. Conclusions: These findings can enhance patient-centered care by characterizing patients who are more likely to be interested in FMT. Aligning treatment with the features that are important to patients can potentially improve satisfaction with and adherence to treatments for active ulcerative colitis to maximize their effectiveness for individual patients.
Patient preferences for active ulcerative colitis treatments and fecal microbiota transplantation.
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Objective: Despite clear evidence on the effectiveness of secondary prevention, patients with coronary artery disease frequently fail to reach guideline-based risk factor targets. Integrating patients' preferences into treatment decisions has been recommended to reduce this gap. However, this requires knowledge about patient treatment preferences. Therefore, through a survey study, we aimed to explore which risk factors patients self-perceived, prioritised for improvement, and needed support with after a recent hospitalisation for coronary heart disease. Methods: A digital questionnaire was presented to patients > 18 years recently discharged (≤3 months) from an acute coronary care unit in the Netherlands (Europe). Patients could select from eight cardiovascular risk factors that they (1) self-perceived, (2) prioritised for improvement, and (3) needed support to improve. Patients' perceived risk factors were compared to those documented in the medical records. Results: Respondents (N = 254, 26 % women), mean age 64 (SD 10) years, identified 'physical inactivity' more frequently than their medical records (140 patients vs. 91 records, p < 0.001), while three other risk factors were reported with equal and four with lower frequency. 'Physical inactivity', 'overweight' and 'stress' were most frequently prioritised for improvement (82 %, 88 % and 78 %) and professional support (64 %, 50 % and 58 %), with 87 % preferring lifestyle optimisation if this would reduce drug use. Conclusions: Patients with a recent coronary event show significant disparities in identifying risk factors compared to their medical records. They tend to prefer improving lifestyle- over drug-modifiable risk factors, particularly physical inactivity, overweight and stress, and indicate the need for support in improving these factors.
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PURPOSE: Cognitive behavioural therapies (CBTs) are a standard of care for treatment of many 'hidden symptoms' in people with MS (PwMS), such as stress, depression, and fatigue. However, these interventions can vary widely in formatting and may not be tailored for PwMS. To optimize CBTs for MS, understanding the experiences of PwMS and clinicians is essential. This systematic review and meta-aggregation synthesizes existing qualitative data on stakeholder perspectives of CBTs for PwMS. METHODS: Systematic searches across five major electronic databases were conducted. Studies reporting qualitative data were identified. Two reviewers performed screening, quality assessment, data extraction, and certainty of evidence assessments. Meta-aggregation was performed as per the Joanna Briggs Institute approach, entailing qualitative data extraction, developing categories, and synthesizing overall findings. RESULTS: Twenty-eight studies were included in this review, comprising data from 653 PwMS and 47 clinicians. In the meta-aggregation, 122 qualitative results were extracted and grouped into nine categories. Categories were then combined into six synthesized findings: (1) setting the context-life with MS, (2) reasons for participating in CBTs, (3) acceptability of and experiences with participating in CBTs, (4) perceived benefits of CBTs, (5) perceived challenges with CBTs, and (6) suggestions to improve CBTs for PwMS. CONCLUSIONS: A range of benefits including psychological, social, and lifestyle improvements were reported, but varied based on the design of the CBT intervention. Future CBT interventions should be tailored to participant needs, delivered in group settings, offer online options, and be delivered by a trained facilitator familiar with MS. Further exploration of the ideal CBT design for PwMS, as well as engagement with caregivers and clinicians treating MS, is warranted.
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Terapia Cognitivo-Conductual , Esclerosis Múltiple , Humanos , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/terapiaRESUMEN
Purpose: Evidence on treatment preferences of patients with moderate-to-severe atopic dermatitis (AD) in the United States (US) is limited and an assessment of treatment preferences in this group is warranted.Materials and methods: An online discrete choice experiment survey was conducted (June 2023) among US adults with self-reported moderate-to-severe AD or experience with systemic therapy who had inadequate response to topical treatments. Preference weights estimated from conditional logistic regression models were used to calculate willingness to trade off and attributes' relative importance (RI).Results: Participants (N = 300; mean age: 45 years; 70% females; 52% systemic therapy experienced) preferred treatments with higher efficacy, lower risk of adverse events (AEs), and less frequent blood tests (p < .05). Treatment attributes, from high to low RI, were itch control (38%), risk of cancer (23%), risk of respiratory infections (18%), risk of heart problems (11%), sustained improvement in skin appearance (5%), blood test frequency (3%), and frequency and mode of administration (2%); together, AE attributes accounted for more than half of the RI.Conclusions: Participants preferred AD treatments that maximize itch control while minimizing AE risks, whereas mode of administration had little impact on preferences. Understanding patients' preferences may help improve shared decision-making, potentially leading to enhanced patient satisfaction with treatment, increased engagement, and better clinical outcomes.
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Dermatitis Atópica , Prioridad del Paciente , Índice de Severidad de la Enfermedad , Humanos , Dermatitis Atópica/terapia , Femenino , Masculino , Persona de Mediana Edad , Adulto , Fármacos Dermatológicos/uso terapéutico , Fármacos Dermatológicos/administración & dosificación , Estados Unidos , Encuestas y Cuestionarios , Conducta de Elección , Prurito/etiología , Resultado del Tratamiento , Adulto JovenRESUMEN
Colorectal cancer (CRC) is a frequent cause of cancer-related mortality in the Palestinian population. This cross-sectional study was conducted from July 2019 to March 2020 and examined attitudes toward CRC and colonoscopy, as well as the interplay between both. Participants were recruited using convenience sampling from public spaces, governmental hospitals, and primary healthcare centers across 11 governorates in Palestine. Displaying a positive attitude was defined as agreeing on at least the median number of questions related to CRC (5 of 11 questions) or colonoscopy (6 of 10 questions). A total of 4623 participants were included. Most participants agreed that 'early detection of CRC increases the possibility of more effective treatment' (n = 4161, 89.7%). Similarly, the majority of participants agreed on 'preferring a physician with a gender similar to the participants to perform the colonoscopy' (n = 3738, 80.9%) and 'willingness to have colonoscopy even if the participant had to pay for it' (n = 3727, 80.6%). Furthermore, 3115 participants (67.4%) demonstrated positive attitudes toward CRC, while 2540 participants (55.0%) displayed similar attitudes toward colonoscopy. Participants from the West Bank and Jerusalem were more likely than those from the Gaza Strip to display positive attitudes toward colonoscopy (59.2% vs. 48.9%). Participants with positive attitudes toward CRC were more likely to also display positive attitudes toward colonoscopy and vice versa. About two thirds of study participants exhibited positive attitudes toward CRC, and 55.0% displayed positive attitudes toward colonoscopy. There was a reciprocal relationship between having positive attitudes toward CRC and colonoscopy.
Asunto(s)
Árabes , Colonoscopía , Neoplasias Colorrectales , Detección Precoz del Cáncer , Humanos , Colonoscopía/psicología , Masculino , Femenino , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/psicología , Persona de Mediana Edad , Encuestas y Cuestionarios , Estudios Transversales , Adulto , Árabes/psicología , Medio Oriente/epidemiología , Detección Precoz del Cáncer/psicología , Anciano , Conocimientos, Actitudes y Práctica en SaludRESUMEN
BACKGROUND: To examine the willingness of older patients to take less diabetes medication (de-intensify) and to identify characteristics associated with willingness to de-intensify treatment. METHODS: Survey conducted in 2019 in an age-stratified, random sample of older (65-100 years) adults with diabetes on glucose-lowering medications in the Kaiser Permanente Northern California Diabetes Registry. We classified survey responses to the question: "I would be willing to take less medication for my diabetes" as willing, neutral, or unwilling to de-intensify. Willingness to de-intensify treatment was examined by several clinical characteristics, including American Diabetes Association (ADA) health status categories used for individualizing glycemic targets. Analyses were weighted to account for over-sampling of older individuals. RESULTS: A total of 1337 older adults on glucose-lowering medication(s) were included (age 74.2 ± 6.0 years, 44% female, 54.4% non-Hispanic white). The proportions of participants willing, neutral, or unwilling to take less medication were 51.2%, 27.3%, and 21.5%, respectively. Proportions of willing to take less medication varied by age (65-74 years: 54.2% vs. 85+ years: 38.5%) and duration of diabetes (0-4 years: 61.0% vs. 15+ years: 44.2%), both p < 0.001. Patients on 1-2 medications were more willing to take less medication(s) compared with patients on 10+ medications (62.1% vs. 46.6%, p = 0.03). Similar proportions of willingness to take less medications were seen across ADA health status, and HbA1c. Willingness to take less medication(s) was similar across survey responses to questions about patient-clinician relationships. CONCLUSIONS: Clinical guidelines suggest considering treatment de-intensification in older patients with longer duration of diabetes, yet patients with these characteristics are less likely to be willing to take less medication(s).