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1.
EClinicalMedicine ; 64: 102244, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37781156

RESUMO

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).

2.
Support Care Cancer ; 31(3): 184, 2023 Feb 23.
Artigo em Inglês | MEDLINE | ID: mdl-36820944

RESUMO

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.


Assuntos
Educação a Distância , Neoplasias , Oncologistas , Humanos , Tomada de Decisão Compartilhada , Oncologistas/educação , Neoplasias/tratamento farmacológico , Comunicação , Tomada de Decisões , Participação do Paciente
3.
Sci Rep ; 11(1): 19823, 2021 10 06.
Artigo em Inglês | MEDLINE | ID: mdl-34615916

RESUMO

Face gaze is a fundamental non-verbal behaviour and can be assessed using eye-tracking glasses. Methodological guidelines are lacking on which measure to use to determine face gaze. To evaluate face gaze patterns we compared three measures: duration, frequency and dwell time. Furthermore, state of the art face gaze analysis requires time and manual effort. We tested if face gaze patterns in the first 30, 60 and 120 s predict face gaze patterns in the remaining interaction. We performed secondary analyses of mobile eye-tracking data of 16 internal medicine physicians in consultation with 100 of their patients. Duration and frequency of face gaze were unrelated. The lack of association between duration and frequency suggests that research may yield different results depending on which measure of face gaze is used. Dwell time correlates both duration and frequency. Face gaze during the first seconds of the consultations predicted face gaze patterns of the remaining consultation time (R2 0.26 to 0.73). Therefore, face gaze during the first minutes of the consultations can be used to predict face gaze patterns over the complete interaction. Researchers interested to study face gaze may use these findings to make optimal methodological choices.


Assuntos
Movimentos Oculares , Tecnologia de Rastreamento Ocular , Fixação Ocular , Médicos , Encaminhamento e Consulta , Adulto , Análise de Dados , Medições dos Movimentos Oculares , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino
4.
Palliat Med ; 35(10): 1865-1877, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34176357

RESUMO

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.


Assuntos
Médicos , Adulto , Criança , Comunicação , Cuidados Críticos , Tomada de Decisões , Família , Feminino , Humanos , Recém-Nascido , Masculino , Pesquisa Qualitativa
5.
Artigo em Inglês | MEDLINE | ID: mdl-34073341

RESUMO

Prognostic communication is essential for patients with advanced cancer to enable informed medical decision-making and end-of-life planning. Discussing prognosis is challenging, and might be especially complex for oncologists conducting a second opinion (SO). Survival data are often lacking, and consulting oncologists need to consider previously conveyed information and patients' relationship with the referring oncologist. We qualitatively investigated how advanced cancer patients and consulting oncologists discuss prognosis during audio-recorded SO consultations (N = 60), including prognostic information received from the referring oncologist. Our results show that patients regularly expressed implicit cues to discuss prognosis or posed explicit questions tentatively. Consulting oncologists were mostly unresponsive to patients' cues and cautious to prognosticate. They also seemed cautious when patients brought up the referring oncologist. Consulting oncologists checked which prognostic information patients had received from the referring oncologist, before estimating prognosis. They agreed with the first opinion or rectified discrepancies carefully. Altogether, this study exposes missed opportunities for open prognostic discussions in SOs. Consulting oncologists could explicitly explore patients' information preferences and perceptions of prognosis. If desired, they can provide tailored, independent information to optimise patients' prognostic awareness and informed medical decision-making. They may additionally support patients in dealing with prognosis and the uncertainties associated with it.


Assuntos
Neoplasias , Oncologistas , Comunicação , Humanos , Neoplasias/terapia , Relações Médico-Paciente , Encaminhamento e Consulta
6.
Behav Res Methods ; 53(5): 2037-2048, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33742418

RESUMO

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.


Assuntos
Movimentos Oculares , Tecnologia de Rastreamento Ocular , Algoritmos , Humanos , Reprodutibilidade dos Testes , Visão Ocular
7.
Qual Life Res ; 29(7): 1747-1766, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32333238

RESUMO

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.


Assuntos
Comunicação , Tomada de Decisões/fisiologia , Neoplasias/terapia , Qualidade de Vida/psicologia , Medição de Risco/métodos , Progressão da Doença , Humanos
8.
J Eur Acad Dermatol Venereol ; 34(11): 2574-2583, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32163645

RESUMO

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.


Assuntos
Dermatite Atópica , Médicos , Psoríase , Tomada de Decisões , Tomada de Decisão Compartilhada , Dermatite Atópica/terapia , Humanos , Países Baixos , Participação do Paciente , Relações Médico-Paciente , Psoríase/terapia , Inquéritos e Questionários
9.
J Community Genet ; 11(2): 183-191, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31168696

RESUMO

The new Dutch guidelines on hereditary and familial ovarian carcinoma recommend genetic testing of all patients with epithelial ovarian cancer (EOC). With this study, we aimed to obtain insight into (1) the acceptance and timing of the offer of genetic counseling in women with EOC, (2) reasons for accepting or declining genetic counseling, and (3) psychological differences between women who did and did not have genetic counseling. A multicenter questionnaire survey was performed in patients with EOC in four Dutch oncology centers. The questionnaire addressed whether, how, and when genetic counseling was offered, women's arguments to accept or decline genetic counseling, and included the Cancer Worry Scale (CWS) and the Hospital Anxiety and Depression Scale (HADS). A total of 67 women completed the questionnaire, of which 43 had genetic counseling. Despite a wide variability in the timing of the offer of genetic counseling, 89% of the women were satisfied with the timing. No significant differences were found between the CWS and HADS scores for the timing of the offer of genetic counseling and whether or not women had genetic counseling. Taking the small sample size into account, the results tentatively suggest that genetic counseling may have limited impact on the psychosocial wellbeing of women with EOC. Therefore, we assume that implementation of the new guidelines offering genetic counseling to all patients with EOC will not cause considerable additional burden to these patients.

10.
J Genet Couns ; 28(5): 1042-1058, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31216099

RESUMO

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.


Assuntos
Atitude Frente a Saúde , Doenças Genéticas Inatas/genética , Predisposição Genética para Doença , Autorrevelação , Família/psicologia , Feminino , Aconselhamento Genético/psicologia , Testes Genéticos , Humanos , Masculino
11.
BMC Cancer ; 18(1): 55, 2018 01 08.
Artigo em Inglês | MEDLINE | ID: mdl-29310605

RESUMO

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).


Assuntos
Tomada de Decisões , Neoplasias/epidemiologia , Oncologistas/educação , Cuidados Paliativos/psicologia , Adulto , Comportamento de Escolha , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Países Baixos/epidemiologia , Oncologistas/psicologia , Participação do Paciente/psicologia , Relações Médico-Paciente , Qualidade de Vida , Inquéritos e Questionários
12.
Artigo em Inglês | MEDLINE | ID: mdl-27734559

RESUMO

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.


Assuntos
Neoplasias Esofágicas , Participação do Paciente/métodos , Qualidade de Vida , Encaminhamento e Consulta , Inquéritos e Questionários/normas , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Neoplasias Esofágicas/psicologia , Neoplasias Esofágicas/cirurgia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente
13.
Patient Educ Couns ; 100(10): 1820-1827, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28511804

RESUMO

OBJECTIVE: To examine how communication about life expectancy is initiated in consultations about palliative chemotherapy, and what prognostic information is presented. METHODS: Patients with advanced cancer (n=41) with a median life expectancy <1year and oncologists (n=6) and oncologists-in-training (n=7) meeting with them in consultations (n=62) to discuss palliative chemotherapy were included. Verbatim transcripts of audio-recorded consultations were analyzed using MAXqda10. RESULTS: Life expectancy was addressed in 19 of 62 of the consultations. In all cases, patients took the initiative, most often through direct questions. Estimates were provided in 12 consultations in various formats: the likelihood of experiencing a significant event, point estimates or general time scales of "months to years", often with an emphasis on the "years". The indeterminacy of estimates was consistently stressed. Also their potential inadequacy was regularly addressed, often by describing beneficial prognostic predictors for the specific patient. Oncologists did not address the reliability or precision of estimates. CONCLUSION: Oncologists did not initiate talk about life expectancy, they used different formats, emphasized the positive and stressed unpredictability, yet not ambiguity of estimates. PRACTICE IMPLICATIONS: Prognostic communication should be part of the medical curriculum. Further research should address the effect of different formats of information provision.


Assuntos
Comunicação , Expectativa de Vida , Neoplasias/psicologia , Oncologistas/psicologia , Relações Médico-Paciente , Idoso , Feminino , Humanos , Masculino , Oncologia , Pessoa de Meia-Idade , Neoplasias/tratamento farmacológico , Neoplasias/mortalidade , Cuidados Paliativos , Prognóstico , Estudos Prospectivos , Pesquisa Qualitativa , Encaminhamento e Consulta
14.
Patient Educ Couns ; 100(7): 1338-1344, 2017 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-28233585

RESUMO

OBJECTIVE: Cancer patients need information provision to cope with their disease. However, only 20-60% of information provided during consultations is remembered. This study aimed to investigate whether oncologists' use of trust-conveying communication, characterized by communicating competence, honesty and caring, enhances patients' memory. Moreover, we aimed to investigate if this hypothetical relationship is mediated by a reduction in psychophysiological arousal during the consultation. METHODS: An experimental design was used, allowing for conclusion about causality. Two versions of a scripted video-taped consultation were used in which the oncologist adopted either a standard or a trust-conveying communication style. 97 cancer-naive individuals acted as analogue patients and were randomly assigned to watch one of the consultations. RESULTS: Free recall, assessed 24-28h after viewing, was higher (p=0.039) in the trust-conveying condition (65.3% versus 59.5%). Recognition did not differ (p=0.502). Psychophysiological assessment during watching showed a smaller heart rate response in the trust-conveying condition (p=0.037). No mediation effect nor an effect on electrodermal activity was found. CONCLUSION: These results suggest that oncologists' use of trust-conveying communication could increase patients' free recall of information and diminish their cardiovascular response. PRACTICE IMPLICATIONS: The underlying mechanisms by which oncologists' communication influences information recall warrants further investigation.


Assuntos
Comunicação , Rememoração Mental/fisiologia , Oncologistas/psicologia , Relações Médico-Paciente , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias , Encaminhamento e Consulta , Confiança
15.
Psychooncology ; 26(4): 452-460, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27246192

RESUMO

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.


Assuntos
Neoplasias Esofágicas/psicologia , Fadiga/psicologia , Qualidade de Vida/psicologia , Encaminhamento e Consulta , Apoio Social , Estresse Psicológico/psicologia , Adulto , Idoso , Estudos Transversais , Neoplasias Esofágicas/complicações , Fadiga/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Países Baixos , Estresse Psicológico/etiologia , Inquéritos e Questionários
16.
Psychooncology ; 26(7): 943-950, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-27502561

RESUMO

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.


Assuntos
Comunicação , Tomada de Decisões , Neoplasias/tratamento farmacológico , Oncologistas/psicologia , Relações Médico-Paciente , Idoso , Quimioterapia Adjuvante , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Gravação em Fita
17.
Int J Health Care Qual Assur ; 29(5): 523-35, 2016 Jun 13.
Artigo em Inglês | MEDLINE | ID: mdl-27256775

RESUMO

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.


Assuntos
Instituições de Assistência Ambulatorial/organização & administração , Agendamento de Consultas , Neoplasias Gastrointestinais/diagnóstico , Neoplasias Gastrointestinais/terapia , Satisfação do Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Neoplasias Gastrointestinais/psicologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Fatores de Tempo , Listas de Espera
18.
Br J Dermatol ; 173(4): 1032-40, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26099516

RESUMO

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.


Assuntos
Satisfação do Paciente , Qualidade da Assistência à Saúde , Dermatopatias/terapia , Inquéritos e Questionários/normas , Adolescente , Adulto , Idoso , Doença Crônica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Relações Profissional-Paciente , Psicometria , Melhoria de Qualidade , Adulto Jovem
19.
Eur J Cancer Care (Engl) ; 24(2): 213-23, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25615269

RESUMO

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.


Assuntos
Neoplasias Colorretais/cirurgia , Internet , Ilustração Médica , Rememoração Mental , Educação de Pacientes como Assunto/métodos , Microcirurgia Endoscópica Transanal , Adulto , Idoso , Compreensão , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente
20.
Br J Surg ; 101(13): 1692-701, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25319127

RESUMO

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.


Assuntos
Neoplasias Esofágicas/cirurgia , Adulto , Idoso , Consenso , Técnica Delphi , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Qualidade de Vida , Adulto Jovem
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