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PURPOSE: To improve shared decision making (SDM) with advanced cancer patients, communication skills training for oncologists is needed. The purpose was to examine the effects of a blended online learning (i.e. e-learning and online training session) for oncologists about SDM in palliative oncological care and to compare this blended format with a more extensive, fully in-person face-to-face training format. METHODS: A one-group pre-posttest design was adopted. Before (T0) and after (T2) training, participants conducted simulated consultations (SPAs) and surveys; after the e-learning (T1), an additional survey was filled out. The primary outcome was observed SDM (OPTION12 and 4SDM). Secondary outcomes included observed SDM per stage, SPA duration and decision made as well as oncologists' self-reported knowledge, clinical behavioural intentions, satisfaction with the communication and evaluation of the training. Additionally, outcomes of the blended learning were compared with those of the face-to-face training cohort. Analyses were conducted in SPSS by linear mixed models. RESULTS: Oncologists (n = 17) showed significantly higher SDM scores after the blended online learning. The individual stages of SDM and the number of times the decision was postponed as well as oncologists' beliefs about capabilities, knowledge and satisfaction increased after the blended learning. Consultation duration was unchanged. The training was evaluated as satisfactory. When compared with the face-to-face training, the blended learning effects were smaller. CONCLUSION: Blended online SDM training for oncologists was effective. However, the effects were smaller compared to face-to-face training. The availability of different training formats provides opportunities for tailoring training to the wishes and needs of learners.
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Educación a Distancia , Neoplasias , Oncólogos , Humanos , Toma de Decisiones Conjunta , Oncólogos/educación , Neoplasias/tratamiento farmacológico , Comunicación , Toma de Decisiones , Participación del PacienteRESUMEN
BACKGROUND: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. AIM: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care. DESIGN: Exploratory inductive thematic analysis of 101 audio-recorded conversations. SETTING/PARTICIPANTS: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated. RESULTS: We identified eight relevant and distinct communicative behaviors. Doctors' sequential communicative behaviors either reflected consistent approaches-a shared approach or a physician-driven approach-or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families' decision-making preferences. CONCLUSIONS: Even though tailoring doctors' communication to families' preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors' awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors' skills in tactfully exploring families' decision-making preferences and in mutually sharing knowledge, values, and treatment preferences.
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Médicos , Adulto , Niño , Comunicación , Cuidados Críticos , Toma de Decisiones , Familia , Femenino , Humanos , Recién Nacido , Masculino , Investigación CualitativaRESUMEN
The assessment of gaze behaviour is essential for understanding the psychology of communication. Mobile eye-tracking glasses are useful to measure gaze behaviour during dynamic interactions. Eye-tracking data can be analysed by using manually annotated areas-of-interest. Computer vision algorithms may alternatively be used to reduce the amount of manual effort, but also the subjectivity and complexity of these analyses. Using additional re-identification (Re-ID) algorithms, different participants in the interaction can be distinguished. The aim of this study was to compare the results of manual annotation of mobile eye-tracking data with the results of a computer vision algorithm. We selected the first minute of seven randomly selected eye-tracking videos of consultations between physicians and patients in a Dutch Internal Medicine out-patient clinic. Three human annotators and a computer vision algorithm annotated mobile eye-tracking data, after which interrater reliability was assessed between the areas-of-interest annotated by the annotators and the computer vision algorithm. Additionally, we explored interrater reliability when using lengthy videos and different area-of-interest shapes. In total, we analysed more than 65 min of eye-tracking videos manually and with the algorithm. Overall, the absolute normalized difference between the manual and the algorithm annotations of face-gaze was less than 2%. Our results show high interrater agreements between human annotators and the algorithm with Cohen's kappa ranging from 0.85 to 0.98. We conclude that computer vision algorithms produce comparable results to those of human annotators. Analyses by the algorithm are not subject to annotator fatigue or subjectivity and can therefore advance eye-tracking analyses.
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Movimientos Oculares , Tecnología de Seguimiento Ocular , Algoritmos , Humanos , Reproducibilidad de los Resultados , Visión OcularRESUMEN
PURPOSE: Cancer patients are increasingly involved in decision-making processes. Hence, clinicians need to inform patients about the risks and benefits of different treatment options in order for patients to make well informed decisions. The aim of this review is to determine the effects of methods of communicating prognostic information about (1) disease progression (survival, progression, recurrence and remission), (2) side effects and complications and (3) health-related quality of life (HRQL) on cognitive, affective and behavioral outcomes in cancer patients. METHODS: A literature search was performed to select articles that were published up to November 2019 and that examined verbal and/or visual risk communication interventions in an oncological clinical setting. RESULTS: The search yielded 14,875 studies; 28 studies were ultimately included. For disease progression information, we found that framing affects treatment choice. Furthermore, limiting the amount of progression information in a graphical display could benefit patients' understanding of risks and benefits. For prognostic information about side effects and complications, precise and defined risk information was better understood than information presented in words. When displaying HRQL data, no consensus was found on which graph type to use. CONCLUSION: Great heterogeneity in the results and methodology and in the compared communication formats precluded us from drawing any further conclusions. Practical implications for clinicians are to consider the effects that different types of framing might have on the patient and to not rely exclusively on words to describe risks, but rather include at least some form of numbers or visualization.
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Comunicación , Toma de Decisiones/fisiología , Neoplasias/terapia , Calidad de Vida/psicología , Medición de Riesgo/métodos , Progresión de la Enfermedad , HumanosRESUMEN
BACKGROUND: In shared decision making (SDM), patients and physicians work together to choose the best treatment option for an individual patient. Atopic dermatitis (AD) and psoriasis are particularly suitable for SDM, considering that the best treatment option depends on a patient's preferences and values (preference-sensitive decisions). Currently, it is unknown to what extent SDM is applied in treatment decisions for these diseases in the Netherlands. OBJECTIVES: Primary, to assess the current extent of SDM in AD and psoriasis in the Netherlands amongst patients and dermatologists. Secondary, to assess the degree to which patients and physicians endorse SDM, to explore which characteristics are related to their preference to be involved in SDM and to identify which barriers and facilitators for SDM they perceive. METHODS: Two similar online surveys, one for patients with AD or psoriasis and one for (resident) dermatologists, were carried out. The surveys comprised validated questionnaires (shared decision making questionnaire (SDM-Q; range 0-100), Control Preference Scale) and study-specific statements mainly regarding barriers and facilitators for SDM. RESULTS: The responses of 219 patients and 147 physicians were analysed. Dermatologists experienced significantly more SDM than patients (SDM-Q 82 vs 55; P < 0.01). Most patients and dermatologists prefer to share treatment decisions. Mainly facilitators for SDM were perceived, including the positive perception of patients and dermatologists regarding SDM. The perceived barriers included lack of continuity of care by the same physician and lack of time. CONCLUSION: Despite the dermatologists' optimistic perspective, patients experience a limited extent of SDM and physicians should be aware of this gap. Improvement of SDM in AD and psoriasis is needed. The positive attitude of patients and dermatologists towards the process and outcome of SDM is important facilitators, while barriers were mainly perceived on an organizational level.
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Dermatitis Atópica , Médicos , Psoriasis , Toma de Decisiones , Toma de Decisiones Conjunta , Dermatitis Atópica/terapia , Humanos , Países Bajos , Participación del Paciente , Relaciones Médico-Paciente , Psoriasis/terapia , Encuestas y CuestionariosRESUMEN
When a genetic disease-causing variant causing autosomal dominant diseases is identified, predictive DNA testing is possible for at-risk relatives to investigate whether they are carrying the familial variant. In current practice, the proband is asked to inform at-risk relatives, often supported by a family letter. This review summarizes the literature on preferences of probands and relatives regarding how and by whom at-risk relatives should be informed. A search involving digital databases (Pubmed, Medline, and PsycInfo) focusing on patient attitudes toward informing relatives at risk of autosomal dominant onco-, cardio-, or neurogenetic disease, resulted in 1,431 screened records, of which 117 full-text papers were assessed. Eventually, 32 studies were selected. This review shows that a majority of participants was in favor of someone in the family to inform their at-risk relatives, with participants generally feeling responsible for informing relatives at risk themselves. However, variation in patient preferences regarding who should inform was observed. Face-to-face disclosure by the proband with additional information material for relatives provided by HCPs was most appreciated. Actively offered support of healthcare professionals was desired. In conclusion, although the family-mediated approach was appreciated by a majority of participants, support by healthcare professionals was desired. By taking patient attitudes into account, the approach used to inform at-risk relatives could be improved. Subsequently, more relatives will be informed and enabled to attend genetic counseling and make an informed decision regarding predictive DNA testing. Further research on patient attitudes, specifying for disease type and cultural background, is needed.
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Actitud Frente a la Salud , Enfermedades Genéticas Congénitas/genética , Predisposición Genética a la Enfermedad , Autorrevelación , Familia/psicología , Femenino , Asesoramiento Genético/psicología , Pruebas Genéticas , Humanos , MasculinoRESUMEN
BACKGROUND: Systemic treatment for advanced cancer offers uncertain and sometimes little benefit while the burden can be high. Hence, treatment decisions require Shared Decision Making (SDM). The CHOICE trial examines the separate and combined effect of oncologist training and a patient communication aid on SDM in consultations about palliative systemic treatment. METHODS: A RCT design with four parallel arms will be adopted. Patients with metastatic or irresectable cancer with a median life expectancy <12 months who meet with a medical oncologist to discuss the start or continuation of palliative systemic treatment are eligible. A total of 24 oncologists (in training) and 192 patients will be recruited. The oncologist training consists of a reader, two group sessions (3.5 h; including modelling videos and role play), a booster feedback session (1 h) and a consultation room tool. The patient communication aid consists of a home-sent question prompt list and a value clarification exercise to prepare patients for SDM in the consultation. The control condition consists of care as usual. The primary outcome is observed SDM in audio-recorded consultations. Secondary outcomes include patient and oncologist evaluation of communication and decision-making, the decision made, quality of life, potential adverse outcomes such as anxiety and hopelessness, and consultation duration. Patients fill out questionnaires at baseline (T0), before (T1) and after the consultation (T2) and at 3 and 6 months (T3 and T4). All oncologists participate in two standardized patient assessments (before-after training) prior to the start of patient inclusion. They will fill out a questionnaire before and after these assessments, as well as after each of the recorded consultations in clinical practice. DISCUSSION: The CHOICE trial will enable evidence-based choices regarding the investment in SDM interventions targeting either oncologists, patients or both in the advanced cancer setting. The trial takes into account the immediate effect of the interventions on observed communication, but also on more distal and potential adverse patient outcomes. Also, the trial provides evidence regarding the assumption that SDM about palliative cancer treatment results in less aggressive treatment and more quality of life in the final period of life. TRIAL REGISTRATION: Netherlands Trial Registry number NTR5489 (prospective; 15 Sep 2015).
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Toma de Decisiones , Neoplasias/epidemiología , Oncólogos/educación , Cuidados Paliativos/psicología , Adulto , Conducta de Elección , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Países Bajos/epidemiología , Oncólogos/psicología , Participación del Paciente/psicología , Relaciones Médico-Paciente , Calidad de Vida , Encuestas y CuestionariosRESUMEN
We developed a web-based question prompt sheet (QPS) to support information provision of health-related quality of life (HRQL) topics after oesophageal cancer surgery. The QPS was evaluated and updated in three consecutive studies. In Study 1, eight patients were guided in using the QPS. Feasibility was assessed by cognitive walkthrough, questionnaire and interview. We obtained 430 notes (217 negative, 213 positive) of patients' actions and or remarks, and 91 suggestions. With minor support, most patients were able to use the QPS. In Study 2, forty patients independently used and appraised a modified version of the QPS by questionnaire. All patients deemed the QPS to be usable and useful. In Study 3, 21 patients and three surgeons used the QPS in clinical practice. Clinical feasibility was assessed by the number of QPS sent to the researcher/surgeon. Patients and surgeons were surveyed and the follow-up consultation was audio-recorded. Surgeons were additionally interviewed. Twenty/fourteen patients sent their QPS to the researcher/surgeon. Five QPSs were read by the consultation surgeon. Patients considered the QPS usable and useful. Surgeons considered the QPS of added value and helpful in informing patients, but currently not clinically feasible due to increased consultation time.
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Neoplasias Esofágicas , Participación del Paciente/métodos , Calidad de Vida , Derivación y Consulta , Encuestas y Cuestionarios/normas , Anciano , Anciano de 80 o más Años , Actitud del Personal de Salud , Neoplasias Esofágicas/psicología , Neoplasias Esofágicas/cirugía , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del PacienteRESUMEN
OBJECTIVES: To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision? METHODS: Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative. RESULTS: The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures. CONCLUSIONS: It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have.
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Comunicación , Toma de Decisiones , Neoplasias/tratamiento farmacológico , Oncólogos/psicología , Relaciones Médico-Paciente , Anciano , Quimioterapia Adyuvante , Femenino , Humanos , Masculino , Persona de Mediana Edad , Grabación en CintaRESUMEN
OBJECTIVE: This study aims to identify patients with oesophageal cancer's level of distress, type of problems, and wish for referral prior to treatment. To identify the clinical relevance of patients with oesophageal cancer's level of distress and type of problems, we build models to predict elevated distress, wish for referral, and overall survival. METHODS: We implemented the Distress Thermometer and Problem List in daily clinical practice. A score of ≥5 on the Distress Thermometer reflected elevated distress. We first created an initial model including predictors based on the literature. We then added predictors to the initial model to create an extended model based on the sample data. We used the 'least absolute shrinkage and selection operator' to define our final model. RESULTS: We obtained data from 187 patients (47.9%, of 390 eligible patients with oesophageal cancer) which were similar to non-respondents in their demographic and clinical characteristics. One-hundred thirteen (60%) patients reported elevated distress. The five most frequently reported problems were as follows: eating, tension, weight change, fatigue, and pain. Most patients did not have a wish for referral. Predictors for elevated distress were as follows: being female, total number of practical, emotional, and physical problems, pain, and fatigue. For referral, we identified age, the total number of emotional problems, the level of distress, and fear. The level of distress added prognostic information in a model to predict overall survival. CONCLUSIONS: Patients with oesophageal cancer report elevated distress and a myriad of problems yet do not have an explicit wish for referral prior to receiving their medical treatment plan. Copyright © 2016 John Wiley & Sons, Ltd.
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Neoplasias Esofágicas/psicología , Fatiga/psicología , Calidad de Vida/psicología , Derivación y Consulta , Apoyo Social , Estrés Psicológico/psicología , Adulto , Anciano , Estudios Transversales , Neoplasias Esofágicas/complicaciones , Fatiga/etiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Países Bajos , Estrés Psicológico/etiología , Encuestas y CuestionariosRESUMEN
Purpose - Guidelines stating maximum waiting times fail to take cancer patients' expectations into account. Therefore, the purpose of this paper is to assess patients' expectations and experiences with their waiting time at a fast-track clinic. Design/methodology/approach - Patients were selected using a purposeful sampling strategy and were interviewed four times: before the visit; one day after; two weeks after the visit; and one week after starting treatment. Interviews were audiotaped and independently coded by two researchers. Findings - All patients (n=9) preferred a short waiting time before the first visit; they feared that their disease would spread and believed that cancer warrants priority treatment. Six patients experienced the waiting time as short, one had no expectations and two felt they waited longer than expected; three patients changed this evaluation during the study. Six patients received treatment - four preferred to wait before treatment and two wanted to start treatment immediately. Reasons to wait included putting one's affairs in order, or needing to adjust to the diagnosis. Practical implications - Cancer patients prefer a short waiting time before the first visit but have different expectations and needs regarding waiting time before treatment. Ideally, their expectations are managed by their treating physician to match waiting time reality. Originality/value - This is the first study to assess cancer patients' waiting time experiences and how these experiences change over time. This study paves the way for establishing a framework to better assess patient satisfaction with oncology care waiting time. An important aspect, is managing patients' expectations.
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Instituciones de Atención Ambulatoria/organización & administración , Citas y Horarios , Neoplasias Gastrointestinales/diagnóstico , Neoplasias Gastrointestinales/terapia , Satisfacción del Paciente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Neoplasias Gastrointestinales/psicología , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Factores de Tiempo , Listas de EsperaRESUMEN
BACKGROUND: Assessing quality of care from the patient's perspective is considered to be highly relevant. As a standardized instrument in dermatology was lacking, we developed a patient experience questionnaire regarding chronic skin disease care: the Consumer Quality Index Chronic Skin Disease (CQI-CSD). OBJECTIVES: (i) To evaluate the dimensional structure of the CQI-CSD, (ii) to assess its ability to distinguish between hospitals according to patients' experiences with quality of care, (iii) to explore patients' experiences with dermatological care and priorities for quality improvement according to the patients, and (iv) to optimize the questionnaire based on psychometric results and stakeholders' input. METHODS: In a cross-sectional study 5647 adult patients who received dermatological care in the past 12 months in 20 hospitals were randomly selected and invited to fill out the questionnaire. RESULTS: Overall 1160 of 3989 eligible respondents (29% response rate, 30-87 per hospital) were included for analysis. The CQI-CSD comprised seven scales with high internal consistency (Cronbach's α = 0·74-0·92). The instrument's discriminative power was limited. Patients were positive about the care provided by nurses and doctors, but the provision of information by healthcare providers, accessibility of care and patient involvement could be improved. We optimized the CQI-CSD, resulting in a revised questionnaire containing 65 items. CONCLUSIONS: In conclusion, the CQI-CSD is a useful instrument to measure patient experiences with dermatological care.
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Satisfacción del Paciente , Calidad de la Atención de Salud , Enfermedades de la Piel/terapia , Encuestas y Cuestionarios/normas , Adolescente , Adulto , Anciano , Enfermedad Crónica , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Profesional-Paciente , Psicometría , Mejoramiento de la Calidad , Adulto JovenRESUMEN
This study aims to investigate the effects of illustrations in online cancer information on older cancer patients' website satisfaction (i.e. satisfaction with the attractiveness, comprehensibility and emotional support from the website) and recall of information. In an online experiment, 174 younger (<65 years) and older (≥65 years) colorectal cancer patients were randomly exposed to a webpage about transanal endoscopic microsurgery consisting of either text-only information, text with two cognitive illustrations or text with two affective illustrations. In general, adding cognitive illustrations compared with text-only information improved the satisfaction with the attractiveness of the website in both younger and older patients. For older patients in particular, cognitive illustrations facilitated recall of cancer information: whereas older patients recalled less information overall compared with younger patients (39% vs. 50%), no statistically significant differences in age on recall were observed when cognitive illustrations were added to text. Furthermore, older patients were more satisfied with the emotional support from the website than younger patients, especially when affective illustrations were present. Our results suggest that effective online cancer communication for ageing populations involves considering both cognitive and affective illustrations to enhance website satisfaction and recall of cancer information.
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Neoplasias Colorrectales/cirugía , Internet , Ilustración Médica , Recuerdo Mental , Educación del Paciente como Asunto/métodos , Microcirugía Endoscópica Transanal , Adulto , Anciano , Comprensión , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del PacienteRESUMEN
BACKGROUND: Cancer patients need to trust their oncologist to embark in the process of oncologic treatment. Yet, it is unclear how oncologist communication contributes to such trust. The aim of this study was to investigate the effect of three elements of oncologists' communication on cancer patients' trust: conferring competence, honesty, and caring. METHODS: Eight videotaped consultations, 'vignettes', were created, reflecting an encounter between an oncologist and a patient with colorectal cancer. All vignettes were identical, except for small variations in the oncologist's verbal communication. Cancer patients (n = 345) were randomly assigned to viewing two vignettes, asked to identify with the patient and afterwards to rate their trust in the observed oncologist. The effects of competence, honesty, and caring on trust were established with multilevel analysis. RESULTS: Oncologist's enhanced expression of competence (ß = 0.17, 95% CI 0.08, 0.27; P < 0.001), honesty (ß = 0.30, 95% CI 0.20, 0.40; P < 0.001), as well as caring (ß = 0.36, 95% CI 0.26, 0.46; P < 0.001) resulted in significantly increased trust. Communication of honesty and caring also increased patients' expectation of operation success and reported willingness to recommend the oncologist. CONCLUSION(S): As hypothesized, oncologists can influence their patients' trust by enhanced conveyance of their level of competence, honesty, and caring. Caring behavior has the strongest impact on trust. These findings can be translated directly into daily clinical practice as well as in communication skills training.
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Neoplasias/psicología , Pacientes/psicología , Relaciones Médico-Paciente , Confianza/psicología , Adulto , Anciano , Anciano de 80 o más Años , Comunicación , Femenino , Humanos , Masculino , Oncología Médica , Persona de Mediana Edad , Neoplasias/patología , Médicos/psicología , Grabación de Cinta de VideoRESUMEN
BACKGROUND: There is no consensus among patients and healthcare professionals (HCPs) on the topics that need to be addressed after oesophageal cancer surgery. The aim of this study was to identify these topics, using a two-round Delphi survey. METHODS: In round 1, patients and HCPs (surgeons, dieticians, nurses) were invited to rate the importance of 49 topics. The proportion of panellists that considered a topic to be of low, moderate or high importance was then calculated for each of these two groups. Based on these proportions and the i.q.r., topics were categorized as: 'consensus to be included', 'consensus to be excluded' and 'no consensus'. Only topics in the first category were included in the second round. In round 2, panellists were provided with individual and group feedback. To be included in the final list, topics had to meet criteria for consensus and stability. RESULTS: There were 108 patients and 77 HCPs in the round 2 analyses. In general, patients and HCPs considered the same topics important. The final list included 23 topics and revealed that it was most important to address: cancer removed/lymph nodes, the new oesophagus, eating and drinking, surgery, alarming new complaints and the recovery period. CONCLUSION: The study provides surgeons with a list of topics selected by patients and HCPs that may be addressed systematically at the initial follow-up consultation after oesophageal cancer surgery.
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Neoplasias Esofágicas/cirugía , Adulto , Anciano , Consenso , Técnica Delphi , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Calidad de Vida , Adulto JovenRESUMEN
PURPOSE: The purpose of the study is to (1) estimate the direction, clinical relevance, and duration of health-related quality-of-life (HRQL) change in the first year following esophageal cancer surgery and (2) to assess the robustness of the estimates by subgroup and sensitivity analyses, and an exploration of publication bias. METHODS: A systematic literature search in MEDLINE, EMBASE, CINAHL, PsychINFO, and CENTRAL to identify randomized and non-randomized studies was performed. We compared the baseline HRQL data with 3-, 6-, 9-, or 12-month follow-ups to estimate the magnitude and duration of HRQL change. These estimates were then classified as trivial, small, medium, or large. Primary outcomes were role functioning, eating, and fatigue. Secondary outcomes were physical and social functioning, dysphagia, pain, and coughing problems. We conducted subgroup analysis for open surgery, open surgery preceded by neoadjuvant therapy, and minimally invasive surgery. Sensitivity analyses assessed the influence of study design, transformation/imputation of the data, and HRQL questionnaire used. RESULTS: We included the data from 15 studies to estimate the change in 28 HRQL outcomes after esophageal cancer surgery. The main analysis showed that patients' social functioning deteriorated. Symptoms of fatigue, pain, and coughing problems increased. These changes lasted for 9-12 months, although some symptoms persisted beyond the first year after surgery. For many other HRQL outcomes, estimates were only robust after subgroup or sensitivity analyses (e.g., role and physical functioning), or remained too heterogeneous to interpret (e.g., eating and dysphagia). CONCLUSIONS: Patients will experience a clinically relevant and long-lasting deterioration in HRQL after esophageal cancer surgery. However, for many HRQL outcomes, more and better quality evidence is needed.
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Neoplasias Esofágicas/psicología , Neoplasias Esofágicas/cirugía , Estado de Salud , Calidad de Vida/psicología , Sobrevivientes/psicología , Terapia Combinada , Esofagectomía , Fatiga/etiología , Fatiga/psicología , Humanos , Evaluación del Resultado de la Atención al Paciente , Encuestas y Cuestionarios , Factores de TiempoRESUMEN
PURPOSE: The purpose of the study is to (1) estimate the direction, clinical relevance, and duration of health-related quality of life (HRQL) change in the first year following esophageal cancer surgery and (2) to assess the robustness of the estimates by subgroup and sensitivity analyses, and an exploration of publication bias. METHODS: A systematic literature search in MEDLINE, EMBASE, CINAHL, PsychINFO, and CENTRAL to identify randomized and non-randomized studies was performed. We compared the baseline HRQL data with 3-, 6-, 9-, or 12-month follow-ups to estimate the magnitude and duration of HRQL change. These estimates were then classified as trivial, small, medium, or large. Primary outcomes were role functioning, eating, and fatigue. Secondary outcomes were physical and social functioning, dysphagia, pain, and coughing problems. We conducted subgroup analysis for open surgery, open surgery preceded by neo-adjuvant therapy, and minimally invasive surgery. Sensitivity analyses assessed the influence of study design, transformation/imputation of the data, and HRQL questionnaire used. RESULTS: We included data from 15 studies to estimate the change in 28 HRQL outcomes after esophageal cancer surgery. The main analysis showed that patients' social functioning deteriorated. Symptoms of fatigue, pain, and coughing problems increased. These changes lasted for 9-12 months, although some symptoms persisted beyond the first year after surgery. For many other HRQL outcomes, estimates were only robust after subgroup or sensitivity analyses (e.g., role and physical functioning), or remained too heterogeneous to interpret (e.g., eating and dysphagia). CONCLUSIONS: Patients will experience a clinically relevant and long-lasting deterioration in HRQL after esophageal cancer surgery. However, for many HRQL outcomes, more and better quality evidence is needed.
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Neoplasias Esofágicas/psicología , Neoplasias Esofágicas/cirugía , Estado de Salud , Calidad de Vida/psicología , Sobrevivientes/psicología , Terapia Combinada , Esofagectomía , Fatiga/etiología , Fatiga/psicología , Humanos , Evaluación del Resultado de la Atención al Paciente , Encuestas y Cuestionarios , Factores de TiempoRESUMEN
BACKGROUND: Various psoriasis treatments are currently available: topical therapy, photo(chemo)therapy, oral agents and biologics. Little is known about patients' satisfaction with these treatment options. Moreover, the few available studies show methodological shortcomings. OBJECTIVES: To answer the following questions: firstly, how satisfied are patients with psoriasis with their current treatment and does patients' satisfaction significantly differ between treatment types when controlling for demographic and clinical factors? Secondly, how important are specific domains of satisfaction to patients, and when taking perceived importance into account, which domains merit the most attention in improving quality of care? METHODS: Members of the two existing Dutch associations for patients with psoriasis were invited to complete a web-based survey, which included a study-specific satisfaction questionnaire. RESULTS: A total of 1293 patients completed the survey (response rate 32%). Overall, patients were moderately satisfied with their current treatment. Patients receiving topical treatment were significantly least satisfied; patients receiving biologic treatment were significantly most satisfied. Overall, patients rated 'treatment effectiveness' as most important, followed by 'treatment safety' and 'doctor-patient communication'. Domains with the highest 'room for improvement' scores were effectiveness of topical therapy, phototherapy and oral agents (but not biologic treatment), convenience of topical treatment and safety of systemic treatments (both oral agents and biologics). CONCLUSIONS: From the perspective of patients, biologic treatment is promising. To improve further the quality of psoriasis care, the effectiveness and convenience of topical therapies, the safety of systemic therapies, and doctors' communication skills need to be addressed.
Asunto(s)
Satisfacción del Paciente , Psoriasis/terapia , Administración Cutánea , Administración Oral , Factores Biológicos/administración & dosificación , Comunicación , Estudios Transversales , Fármacos Dermatológicos/administración & dosificación , Femenino , Encuestas Epidemiológicas , Humanos , Internet , Masculino , Persona de Mediana Edad , Educación del Paciente como Asunto , Fototerapia/psicología , Relaciones Médico-Paciente , Psoriasis/psicología , Resultado del TratamientoRESUMEN
Background: For cancer patients to effectively engage in decision making, they require comprehensive and understandable information regarding treatment options and their associated outcomes. We developed an online prediction tool and supporting communication skills training to assist healthcare providers (HCPs) in this complex task. This study aims to assess the impact of this combined intervention (prediction tool and training) on the communication practices of HCPs when discussing treatment options. Methods: We conducted a multicenter intervention trial using a pragmatic stepped wedge design (NCT04232735). Standardized Patient Assessments (simulated consultations) using cases of esophageal and gastric cancer patients, were performed before and after the combined intervention (March 2020 to July 2022). Audio recordings were analyzed using an observational coding scale, rating all utterances of treatment outcome information on the primary outcome-precision of provided outcome information-and on secondary outcomes-such as: personalization, tailoring and use of visualizations. Pre vs. post measurements were compared in order to assess the effect of the intervention. Findings: 31 HCPs of 11 different centers in the Netherlands participated. The tool and training significantly affected the precision of the overall communicated treatment outcome information (p = 0.001, median difference 6.93, IQR (-0.32 to 12.44)). In the curative setting, survival information was significantly more precise after the intervention (p = 0.029). In the palliative setting, information about side effects was more precise (p < 0.001). Interpretation: A prediction tool and communication skills training for HCPs improves the precision of treatment information on outcomes in simulated consultations. The next step is to examine the effect of such interventions on communication in clinical practice and on patient-reported outcomes. Funding: Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (UVA 2014-7000).
RESUMEN
PURPOSE: The aim of this study was to develop and validate the Trust in Oncologist Scale (TiOS), which aims to measure cancer patients' trust in their oncologist. Structure, reliability and validity were examined. METHODS: Construction of the TiOS was based on a multidimensional theoretical framework. Cancer patients were surveyed within a week after their consultation. Trust, satisfaction, trust in health care, self-reported health and background variables were assessed. Dimensionality, internal consistency, test-retest reliability and construct validity were investigated. RESULTS: Data of 423 patients were included (response rate = 65%). After item reduction, the TiOS included 18 items. Trust scores were high. Exploratory factor analysis suggested one-dimensionality. Confirmatory factor analysis nevertheless indicated a reasonable fit of our four-dimensional theoretical model, distinguishing competence, fidelity, honesty and caring. Internal consistency and test-retest reliabilities were high. Good construct validity was indicated by moderate correlations of trust (TiOS) with satisfaction, trust in health care, willingness to recommend and number of consultations with the oncologist. Exploratory analyses suggested significant correlations of trust with ethnicity and age. CONCLUSIONS: The TiOS reliably and validly assesses cancer patients' trust in their oncologist. The questionnaire can be employed in both clinical practice and future research of cancer patients' trust.