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OBJECTIVE: To describe young adult childhood cancer survivors' disclosure of their cancer history (i.e., disclosure behavior, difficulty, and timing), perceived partner responses, and associations with relationship status satisfaction. METHODS: German long-term survivors of childhood cancer (N = 509; response rate: 31.3%, age 21-26, 59.7% female) completed a registry-based nationwide survey (embedded mixed methods design, including closed and open-ended questions) on measures about disclosure history (behavior, difficulty, and timing), partner responses, and relationship status satisfaction. Statistical (χ2 -, t-, or F-tests) and qualitative analyses were conducted. RESULTS: Half of all survivors always disclosed their cancer history to romantic partners. Thereby, three themes for considering (non-)disclosure were identified: Survivors' attitudes, having integrated cancer as part of their identity, and anticipated effects on romantic relationships. About 40% indicated having no difficulties with disclosing their cancer history. The timing of disclosure varied, with most survivors disclosing after a few dates. Facilitators of disclosure were the visibility of their former illness (e.g., scars), having trust in a (potential) partner, getting older/mature, and previous positive experiences with disclosure. Few survivors (13.8%) had ever experienced negative responses from dating partners. Yet, those who had negative experiences, found it more difficult to disclose their cancer history. Survivors were overall rather satisfied with their relationship status, with partnered survivors reporting greater satisfaction than singles (Hedge's g = 1.68); and particularly partnered survivors with past positive responses being most satisfied. CONCLUSIONS: Young adult childhood cancer survivors appear rather open in disclosing their cancer history to (potential) romantic partners, and few experienced negative responses. Psycho-educational programs may emphasize such findings in helping to prevent fear of disclosure or avoidance of dating and disclosure among survivors.
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Supervivientes de Cáncer , Neoplasias , Adulto Joven , Humanos , Femenino , Niño , Adulto , Masculino , Revelación , Sobrevivientes , Autorrevelación , Parejas SexualesRESUMEN
OBJECTIVES: This study aimed to validate the Japanese versions of the Trust in Oncologist Scale (TiOS-J) and the TiOS-Short Form (TiOS-SF-J). METHODS: A cross-sectional web-based survey was conducted among cancer patients in Japan. The forward-backward translation method was used to develop the TiOS-J. The web-based survey was mailed to 633 people, of whom 309 responded. After 2 weeks, 103 among the 156 first-time respondents completed the second survey to verify the reliability of the retest method. The validity was evaluated by exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Spearman's correlation coefficients between the Patient Satisfaction Questionnaire-Japanese, willingness to recommend the oncologist, trust in health care, and number of oncological consultations. To evaluate reliability, Cronbach's α and test-retest correlation were calculated. RESULTS: The theoretically driven four-factor model and the EFA-driven one-factor model of the full-form TiOS-J (18 items) did not result in an acceptable fit; however, CFA supported the one-dimensionality of the 5 items from the TiOS-SF-J (χ2 (5) = 12.36, p = 0.03, goodness-of-fit index = 0.984, adjusted goodness-of-fit index = 0.952, comparative fit index = 0.991, and root mean square error of approximation = 0.069). With regard to the reliability of TiOS-J and TiOS-SF-J, the Cronbach's alpha values were 0.94 and 0.89, respectively; the test-retest values were 0.82 and 0.78. SIGNIFICANCE OF RESULTS: This study indicated that the TiOS-J and TiOS-SF-J are valid and reliable instruments for measuring patients' trust in their oncologists and can be used to assess trust in oncologists for both clinical and research purposes.
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BACKGROUND: Physicians' gaze towards their patients may affect patients' trust in them. This is especially relevant considering recent developments, including the increasing use of Electronic Health Records, which affect physicians' gaze behavior. Moreover, socially anxious patients' trust in particular may be affected by the gaze of the physician. OBJECTIVE: We aimed to evaluate if physicians' gaze towards the face of their patient influenced patient trust and to assess if this relation was stronger for socially anxious patients. We furthermore explored the relation between physicians' gaze and patients' perception of physician empathy and patients' distress. DESIGN: This was an observational study using eye-tracking glasses and questionnaires. PARTICIPANTS: One hundred patients and 16 residents, who had not met before, participated at an internal medicine out-patient clinic. MEASURES: Physicians wore eye-tracking glasses during medical consultations to assess their gaze towards patients' faces. Questionnaires were used to assess patient outcomes. Multilevel analyses were conducted to assess the relation between physicians' relative face gaze time and trust, while correcting for patient background characteristics, and including social anxiety as a moderator. Analyses were then repeated with perceived empathy and distress as outcomes. RESULTS: More face gaze towards patients was associated with lower trust, after correction for gender, age, education level, presence of caregivers, and social anxiety (ß=-0.17, P=0.048). There was no moderation effect of social anxiety nor a relation between face gaze and perceived empathy or distress. CONCLUSIONS: These results challenge the notion that more physician gaze is by definition beneficial for the physician-patient relationship. For example, the extent of conversation about emotional issues might explain our findings, where more emotional talk could be associated with more intense gazing and feelings of discomfort in the patient. To better understand the relation between physician gaze and patient outcomes, future studies should assess bidirectional face gaze during consultations.
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Médicos , Confianza , Comunicación , Empatía , Humanos , Relaciones Médico-PacienteRESUMEN
BACKGROUND: Health-care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no overview existed for health-care professionals on how to discuss uncertainty. OBJECTIVE: To generate an overview of available recommendations on how to communicate uncertainty with patients during clinical encounters. SEARCH STRATEGY: A scoping review was conducted. Four databases were searched following the PRISMA-ScR statement. Independent screening by two researchers was performed of titles and abstracts, and subsequently full texts. INCLUSION CRITERIA: Any (non-)empirical papers were included describing recommendations for any health-care provider on how to orally communicate uncertainty to patients. DATA EXTRACTION: Data on provided recommendations and their characteristics (eg, target group and strength of evidence base) were extracted. Recommendations were narratively synthesized into a comprehensible overview for clinical practice. RESULTS: Forty-seven publications were included. Recommendations were based on empirical findings in 23 publications. After narrative synthesis, 13 recommendations emerged pertaining to three overarching goals: (a) preparing for the discussion of uncertainty, (b) informing patients about uncertainty and (c) helping patients deal with uncertainty. DISCUSSION AND CONCLUSIONS: A variety of recommendations on how to orally communicate uncertainty are available, but most lack an evidence base. More substantial research is needed to assess the effects of the suggested communicative approaches. Until then, health-care providers may use our overview of communication strategies as a toolbox to optimize communication about uncertainty with patients. PATIENT OR PUBLIC CONTRIBUTION: Results were presented to stakeholders (physicians) to check and improve their practical applicability.
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Comunicación , Médicos , Personal de Salud , Humanos , IncertidumbreRESUMEN
INTRODUCTION: The Trust in Oncologist Scale (TiOS) is an 18-item questionnaire aimed to assess the cancer patients' trust in their oncologist and has been validated in Dutch and English language. This study aims to validate the Italian version of the TiOS (IT-TiOS) and the TiOS-Short Form (IT-TiOS-SF). METHODS: The IT-TiOS was administered to 194 patients recruited in an Italian oncology department from April to December 2018. Data collected included socio-demographic data, health and clinical information, satisfaction with the most recent oncology visit and trust in the regional healthcare system. Internal consistency, test-retest reliability, convergent and the structural validity of both the full and short form were tested. RESULTS: Factor analyses indicated that neither four-factor nor one-factor models of the full scale were acceptable. However, confirmatory factor analysis supported the one-dimensionality of the IT-TiOS-SF, and internal consistency assessed with Cronbach's alpha was 0.88. Mean scores on the IT-TiOS-SF correlated with satisfaction with the oncologist (rs = 0.64) and willingness to recommend the oncologist to others (rs = 0.67), confirming good construct validity. CONCLUSION: The IT-TiOS-SF demonstrates good psychometric properties and can be used to assess trust for both clinical and research purposes.
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Oncólogos , Confianza , Humanos , Italia , Lenguaje , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
BACKGROUND: Cancer patients increasingly seek second opinion (SO) consultations, but there is scarce empirical evidence to substantiate medical and psychological benefits for patients. This is the first study to examine patient- and oncologist-reported (1) motivations and expectations of patients to seek a SO, (2) the perceived medical outcome, and (3) psychological consequences of SOs over time (i.e. patients' uncertainty and anxiety). MATERIAL AND METHODS: This multi-informant longitudinal cohort study (SO-COM) included consecutive cancer patients referred for a SO (N = 70; age 28-85), as well as their referring and consulting oncologists. Outcome measures were completed at three time points: Patients and referring oncologists reported motivations and expectations before the SO (T0), patients and consulting oncologists reported the medical outcome of the SO (i.e. discrepancy between first and second opinion) immediately following the SO (T1), and patients reported their uncertainty and anxiety at T0, T1, and two months following the SO (T2). RESULTS: Cancer patients most frequently reported wanting expert advice, exhausting all options, and/or needing more information as motivations for SOs. Referring oncologists rather accurately anticipated these motivations, except most did not recognize patients' information needs. The vast majority of patients (90.0%) received a medical advice similar to the first opinion, although 65.7% had expected to receive a different opinion. Patients' uncertainty (F = 6.82, p=.002; η2 =.22), but not anxiety (F = 3.074, p=.055, η2 =.11) was significantly reduced after the SO. CONCLUSIONS: SOs can yield psychological benefits by reducing patients' uncertainty, but the added medical value remains debatable. Referring oncologists may not be fully aware of their patients' information needs. Patients should be better informed about goals and benefits of SOs to better manage their expectations. More cost-effective ways of optimally providing medically and psychologically valuable SOs need to be explored.
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Motivación , Neoplasias , Adulto , Anciano , Anciano de 80 o más Años , Humanos , Estudios Longitudinales , Persona de Mediana Edad , Neoplasias/terapia , Relaciones Médico-Paciente , Derivación y Consulta , IncertidumbreRESUMEN
BACKGROUND: The development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the cause of symptoms, yet does not always provide patients with the desired certainty. OBJECTIVE: To examine, using both quantitative and qualitative methods, uncertainty communicated by memory clinic clinicians in post-diagnostic testing consultations with patients and their caregivers. METHODS: First, we identified all uncertainty expressions of 22 clinicians in audiotaped post-diagnostic testing consultations with 78 patients. Second, we statistically explored relationships between patient/clinician characteristics and uncertainty expressions. Third, the transcribed uncertainty expressions were qualitatively analysed, determining the topic to which they pertained, their source and initiator/elicitor (clinicians/patients/caregivers). RESULTS: Within 57/78 (73%) consultations, clinicians expressed in total 115 uncertainties, of which 37% elicited by the patient or caregiver. No apparent relationships were found between patient/clinician characteristics and whether or not, and how often clinicians expressed uncertainty. Uncertainty expressions pertained to ten different topics, most frequently patient's diagnosis and symptom progression. Expressed uncertainty was mostly related to the unpredictability of the future and limits to available knowledge. DISCUSSION AND CONCLUSIONS: The majority of clinicians openly discussed the limits of scientific knowledge and diagnostic testing with patients and caregivers in the dementia context. Noticeably, clinicians did not discuss uncertainty in about one quarter of consultations. More evidence is needed on the beneficial and/or harmful effects on patients of discussing uncertainty with them. This knowledge can be used to support clinicians to optimally convey uncertainty and facilitate patients' uncertainty management.
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Enfermedad de Alzheimer/diagnóstico , Comunicación , Pruebas Diagnósticas de Rutina , Revelación , Personal de Salud/estadística & datos numéricos , Pacientes/estadística & datos numéricos , Incertidumbre , Anciano , Instituciones de Atención Ambulatoria , Cuidadores/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Países Bajos , Pacientes/psicología , Investigación CualitativaRESUMEN
BACKGROUND: Video vignettes are used to test the effects of physicians' communication on patient outcomes. Methodological choices in video-vignette development may have far-stretching consequences for participants' engagement with the video, and thus the ecological validity of this design. To supplement the scant evidence in this field, this study tested how variations in video-vignette introduction format and camera focus influence participants' engagement with a video vignette showing a bad news consultation. METHODS: Introduction format (A = audiovisual vs. B = written) and camera focus (1 = the physician only, 2 = the physician and the patient at neutral moments alternately, 3 = the physician and the patient at emotional moments alternately) were varied in a randomized 2 × 3 between-subjects design. One hundred eighty-one students were randomly assigned to watch one of the six resulting video-vignette conditions as so-called analogue patients, i.e., they were instructed to imagine themselves being in the video patient's situation. Four dimensions of self-reported engagement were assessed retrospectively. Emotional engagement was additionally measured by recording participants' electrodermal and cardiovascular activity continuously while watching. Analyses of variance were used to test the effects of introduction format, camera focus and their interaction. RESULTS: The audiovisual introduction induced a stronger blood pressure response during watching the introduction (p = 0.048, [Formula: see text]= 0.05) and the consultation part of the vignette (p = 0.051, [Formula: see text]= 0.05), when compared to the written introduction. With respect to camera focus, results revealed that the variant focusing on the patient at emotional moments evoked a higher level of electrodermal activity (p = 0.003, [Formula: see text]= 0.06), when compared to the other two variants. Furthermore, an interaction effect was shown on self-reported emotional engagement (p = 0.045, [Formula: see text]= 0.04): the physician-only variant resulted in lower emotional engagement if the vignette was preceded by the audiovisual introduction. No effects were shown on the other dimensions of self-reported engagement. CONCLUSIONS: Our findings imply that using an audiovisual introduction combined with alternating camera focus depicting patient's emotions results in the highest levels of emotional engagement in analogue patients. This evidence can inform methodological decisions during the development of video vignettes, and thereby enhance the ecological validity of future video-vignettes studies.
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Comunicación , Participación del Paciente/métodos , Relaciones Médico-Paciente , Derivación y Consulta , Grabación en Video/métodos , Adolescente , Adulto , Presión Sanguínea , Femenino , Humanos , Masculino , Simulación de Paciente , Estudios Retrospectivos , Autoinforme , Adulto JovenRESUMEN
BACKGROUND: Although patient-driven second opinions are increasingly sought in oncology, the desirability of this trend remains unknown. Therefore, this systematic review assesses evidence on the motivation for and frequency of requests for second opinions and examines how they evolve and their consequences for oncological practice. MATERIALS AND METHODS: Relevant databases were sought using the terms "cancer," "second opinion," and "self-initiated." Included were peer-reviewed articles that reported on patient-initiated second opinions within oncology. Selection, data extraction, and quality assessment were performed and discussed by two researchers. RESULTS: Of the 25 included studies, the methodological designs were qualitative (n = 4), mixed (n = 1), or quantitative (n = 20). Study quality was rated high for 10 studies, moderate for eight, and low for seven studies. Reported rates of second opinion seeking ranged from 1%-88%. Higher education was most consistently related to seeking a second opinion. Patients' primary motivations were a perceived need for certainty or confirmation, a lack of trust, dissatisfaction with communication, and/or a need for more (personalized) information. Reported rates of diagnostic or therapeutic discrepancies between the first and second opinions ranged from 2%-51%. DISCUSSION: Additional studies are required to further examine the medical, practical, and psychological consequences of second opinions for patients and oncologists. Future studies could compare the potential advantages and disadvantages of second opinion seeking, and might offer guidance to patients and physicians to better facilitate the second opinion process. Some practical recommendations are provided for oncologists to optimally discuss and conduct second opinions with their patients. The Oncologist 2017;22:1197-1211 IMPLICATIONS FOR PRACTICE: Although cancer patients increasingly seek a second opinion, the benefits of this process remain unclear. Results of this systematic review suggest that the available studies on this topic are highly variable in both methodology and quality. Moreover, reported rates for a second opinion (1%-88%) as well as for disagreement between the first and second opinion (2%-51%) range widely. The primary motivations of patients are a need for certainty, lack of trust, dissatisfaction with communication, and/or a need for more (personalized) information. Additional research should evaluate how unnecessary second opinions might be avoided. Practical suggestions are provided for oncologists to optimize second opinions.
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Satisfacción del Paciente/estadística & datos numéricos , Relaciones Médico-Paciente/ética , Derivación y Consulta/ética , Femenino , Humanos , Masculino , Investigación CualitativaRESUMEN
PURPOSE: The original 18-item, four-dimensional Trust in Oncologist Scale assesses cancer patients' trust in their oncologist. The current aim was to develop and validate a short form version of the scale to enable more efficient assessment of cancer patients' trust. METHODS: Existing validation data of the full-length Trust in Oncologist Scale were used to create a short form of the Trust in Oncologist Scale. The resulting short form was validated in a new sample of cancer patients (n = 92). Socio-demographics, medical characteristics, trust in the oncologist, satisfaction with communication, trust in healthcare, willingness to recommend the oncologist to others and to contact the oncologist in case of questions were assessed. Internal consistency, reliability, convergent and structural validity were tested. RESULTS: The five-item Trust in Oncologist Scale Short Form was created by selecting the statistically best performing item from each dimension of the original scale, to ensure content validity. Mean trust in the oncologist was high in the validation sample (response rate 86%, M = 4.30, SD = 0.98). Exploratory factor analyses supported one-dimensionality of the short form. Internal consistency was high, and temporal stability was moderate. Initial convergent validity was suggested by moderate correlations between trust scores with associated constructs. CONCLUSIONS: The Trust in Oncologist Scale Short Form appears to efficiently, reliably and validly measures cancer patients' trust in their oncologist. It may be used in research and as a quality indicator in clinical practice. More thorough validation of the scale is recommended to confirm this initial evidence of its validity.
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Neoplasias/psicología , Oncólogos , Relaciones Médico-Paciente , Psicometría/métodos , Confianza , Adulto , Anciano , Análisis Factorial , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Satisfacción del Paciente , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: People who have cancer increasingly seek second opinions. Yet, we know little about what motivates patients to seek them and how beneficial they are. Uncertainty-experienced by patients or communicated by physician and patient-may be crucial throughout the second opinion process. OBJECTIVE: This study sought to investigate (1) how uncertainty influences men with prostate cancer to seek second opinions and (2) how second opinions may affect these patients' sense of uncertainty and subsequent experiences with their care. METHODS: A qualitative study using semi-structured interviews was performed. Men with localized or advanced prostate cancer (n=23) were interviewed by telephone about their motivations and experiences with seeking second opinions and the uncertainties they experienced. Analysis was performed using the constant comparative method. RESULTS: Patients sought second opinions because they were uncertain about receiving too little or biased information, experienced insufficient support in coming to a treatment decision, or because physicians expressed different levels of uncertainty than they did ("unshared uncertainty"). Uncertainty was reduced by the second opinion process for most patients, whereas for others, it increased or was sustained. This evolution depended on the way uncertainty was addressed during the second opinion consultation. CONCLUSIONS: Second opinions may be a useful tool for some but not all patients. They should be used judiciously and not be viewed as a solution for current limitations to health-care organization. An important yet challenging task for physicians is to focus less on information per se and more on how to assist patients manage irreducible uncertainty.
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Toma de Decisiones , Neoplasias de la Próstata/terapia , Derivación y Consulta , Incertidumbre , Anciano , Humanos , Masculino , Satisfacción del Paciente , Relaciones Médico-Paciente , Médicos , Investigación CualitativaRESUMEN
Background Information in oncological consultations is often excessive. Those patients who better recall information are more satisfied, less anxious and more adherent. Optimal recall may be enhanced by the oncologist's non-verbal communication. We tested the influence of three non-verbal behaviors, i.e. eye contact, body posture and smiling, on patients' recall of information and perceived friendliness of the oncologist. Moreover, the influence of patient characteristics on recall was examined, both directly or as a moderator of non-verbal communication. Material and methods Non-verbal communication of an oncologist was experimentally varied using video vignettes. In total 194 breast cancer patients/survivors and healthy women participated as 'analog patients', viewing a randomly selected video version while imagining themselves in the role of the patient. Directly after viewing, they evaluated the oncologist. From 24 to 48 hours later, participants' passive recall, i.e. recognition, and free recall of information provided by the oncologist were assessed. Results Participants' recognition was higher if the oncologist maintained more consistent eye contact (ß = 0.17). More eye contact and smiling led to a perception of the oncologist as more friendly. Body posture and smiling did not significantly influence recall. Older age predicted significantly worse recognition (ß = -0.28) and free recall (ß = -0.34) of information. Conclusion Oncologists may be able to facilitate their patients' recall functioning through consistent eye contact. This seems particularly relevant for older patients, whose recall is significantly worse. These findings can be used in training, focused on how to maintain eye contact while managing computer tasks.
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Neoplasias de la Mama/psicología , Oncólogos , Relaciones Médico-Paciente , Adulto , Anciano , Anciano de 80 o más Años , Ansiedad , Femenino , Humanos , Recuerdo Mental , Persona de Mediana Edad , Educación del Paciente como Asunto , Factores Socioeconómicos , Grabación en VideoRESUMEN
Trust in the oncologist is crucial for breast cancer patients. It reduces worry, enhances decision making, and stimulates adherence. Optimal nonverbal communication by the oncologist, particularly eye contact, body posture, and smiling, presumably benefits patients' trust. We were the first to experimentally examine (1) how the oncologist's nonverbal behavior influences trust, and (2) individual differences in breast cancer patients' trust. Analogue patients (APs) viewed one out of eight versions of a video vignette displaying a consultation about chemotherapy treatment. All eight versions varied only in the oncologist's amount of eye contact (consistent vs. inconsistent), body posture (forward leaning vs. varying), and smiling (occasional smiling vs. no smiling). Primary outcome was trust in the observed oncologist (Trust in Oncologist Scale). 214 APs participated. Consistent eye contact led to stronger trust (ß = -.13, p = .04). This effect was largely explained by lower educated patients, for whom the effect of consistent eye contact was stronger than for higher educated patients (ß = .18, p = .01). A forward leaning body posture did not influence trust, nor did smiling. However, if the oncologist smiled more, he was perceived as more friendly (rs = .31, p < .001) and caring (rs = .18, p = .01). Older (ß = .17, p = .01) and lower educated APs (ß = -.25, p < .001) were more trusting. Trust was weaker for more avoidantly attached APs (ß = -.16, p = .03). We experimentally demonstrated the importance of maintaining consistent eye contact for breast cancer patients' trust, especially among lower educated patients. These findings need to be translated into training for oncologists in how to optimize their nonverbal communication with breast cancer patients while simultaneously managing increased time pressure and computer use during the consultation.
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Neoplasias de la Mama , Comunicación no Verbal , Relaciones Médico-Paciente , Médicos , Confianza , Adulto , Anciano , Anciano de 80 o más Años , Estudios de Casos y Controles , Femenino , Humanos , Persona de Mediana EdadRESUMEN
OBJECTIVES: Non-normative uncertainty (uncertainty about empirical facts) and normative uncertainty (uncertainty about moral values or beliefs) regarding unsolicited findings (UFs) might play an important role in clinical genetics. Identifying normative uncertainty is of special interest since it might guide towards novel directions for counseling practice. This study aims to gain insight into the role of non-normative and normative uncertainty regarding UFs, as expressed by counselees and counselors. METHODS: We performed a secondary qualitative analysis of interviews with counselees (n = 20) and counselors (n = 20) who had been confronted with UFs. Following a deductive approach, we used Han et al.'s existing theoretical framework of uncertainty, in which we additionally incorporated normative uncertainty. RESULTS: Major issues of non-normative uncertainty were practical and personal for counselees, whilst counselors' uncertainty pertained mainly to scientific issues. Normative uncertainty was a major theme throughout the interviews. We encountered the moral conflicts of autonomy vs. beneficence and non-maleficence and of autonomy vs. truthfulness. CONCLUSION: Non-normative uncertainty regarding UFs highlights the need to gain more insight in their penetrance and clinical utility. This study suggests moral conflicts are a major source of feelings of uncertainty in clinical genetics. PRACTICE IMPLICATIONS: Exploring counselees' non-normative uncertainties and normative conflicts seems a prerequisite to optimize genetic counseling.
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Consejeros , Pruebas Genéticas , Humanos , Incertidumbre , Asesoramiento Genético/psicología , Consejeros/psicología , EmocionesRESUMEN
PURPOSE: Patients with a rare cancer face challenges, e.g., delayed diagnosis, that may affect trust in the healthcare system and the healthcare professionals (HCPs) involved. This study aimed to explore trust of patients with a rare cancer in their HCPs and the healthcare system. METHODS: Semi-structured interviews were conducted with 20 purposively sampled patients with a rare cancer. The interview guide included topics related to trust, including level, development, barriers and facilitators, importance, and trust dimensions. Thematic analysis was conducted with use of Atlas.ti. RESULTS: The mean age of patients was 50 years, 60% were female, and 70% were highly educated. Three themes were constructed: (1) "Confirmed expertise is a prerequisite of trust." Patients need confirmation of their HCPs' expertise, as it could not be assumed due to the rarity of their cancer; (2) "Trust depends on the adequacy of information and how it is provided." Limited information about rare cancer reduced patients' trust in health care, whereas interpersonal trust was mainly affected by how HCPs provided information; and (3) "Trust is built on properly coordinated and supportive care." Proper organization and cooperation within and between hospitals, and integration of supportive care, enhanced trust. CONCLUSION: Patients with a rare cancer experience challenges that influence trust in HCPs and the healthcare system. Further research should examine trust among subgroups of patients with a rare cancer, to enable development of tailored interventions. IMPLICATIONS FOR CANCER SURVIVORS: HCPs may improve trust by focusing on expertise, effective information provision, proper coordination of care, and provision of adequate supportive care.
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Background: Patients with Parkinson's disease (PD) need to receive adequate information to manage their disease. However, little is known about how information provision affects patients. Objective: To conduct a scoping review of the literature on the relationship between content, timing, manner of delivery, and source of PD-specific information on the one hand, and patient outcomes on the other. Methods: All literature reporting about original data and published until April 2024 in peer-reviewed journals was searched in MEDLINE (Ovid), Embase (Ovid) and PsychInfo (Ovid). Subsequently, data were extracted and synthesized. Results: 40 publications describing the effects of information provision or patients' evaluation thereof were retrieved. Four categories of patient outcomes were described, namely 1) evaluation and experience of information provision; 2) physical functioning; 3) psychosocial well-being; and 4) quality of life. In intervention studies, patients generally valued the provided information. Findings from cross-sectional and qualitative studies showed the importance of tailoring information to individuals' needs and capabilities. Due to variation in study designs and outcomes, no unambiguous conclusions could be drawn regarding the relationship between information and outcomes. Conclusions: This scoping review identified how PD patients acquire information and revealed a lack of systematic research into the effect of information on patient outcomes. Future studies should assess 1) what information is currently provided by clinicians; 2) what additional information might be beneficial to provide; and 3) how information can be effectively aligned to benefit patients. This will eventually yield insight into how information might optimally empower PD patients.
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Enfermedad de Parkinson , Enfermedad de Parkinson/psicología , Humanos , Calidad de Vida , Educación del Paciente como AsuntoRESUMEN
OBJECTIVE: Test decisions depend on the context in which health care is delivered. We interviewed paediatricians about perceived societal developments and their influence on diagnostic testing. DESIGN: Qualitative interview study. METHODS: Semi-structured in-depth interviews with 20 practicing Dutch paediatricians. RESULTS: Paediatricians associated societal developments, such as decreased risk acceptance, with perceived pressure from parents to perform tests. They were motivated to restrict unnecessary tests to avoid harming the child. CONCLUSION: Besides motivation and effort of health care providers, appropriate testing requires system-level actions, such as counteracting a culture of blame and considering societal interests in guideline recommendations.
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Motivación , Pediatras , Niño , Humanos , Pautas de la Práctica en Medicina , Investigación Cualitativa , Pruebas Diagnósticas de RutinaRESUMEN
OBJECTIVE: Cancer patients may seek a second opinion (SO) driven by reduced trust in their own providers. Their trust may be diminished or reinforced through the SO. This study aimed to assess (1) what proportion of patients seek SOs motivated by lacking trust and how trust changes over time; (2) whether patients' trust differs by the outcome of the SO (i.e. similar/different opinion); and (3) how communication during the SO affects trust. DESIGN: A longitudinal mixed methods study including self-report assessments before (T0), immediately following (T1), and two months after the SO (T2). SO consultations (N = 62) were audio recorded, and patient-oncologist communication about the referring oncologist was coded. MAIN OUTCOME MEASURES: Patient-reported motives and their trust in referring oncologists. RESULTS: Reduced trust motivated 21% of patients to seek a SO. Most patients criticised their referring oncologist. Consulting oncologists generally defended their colleagues, but such affirmation was unrelated to patients' subsequent trust. Over time, trust did not change substantially. Yet, it was restored in patients motivated by impaired trust, and remained low for patients receiving a different medical outcome. CONCLUSION: Patients need support to more constructively discuss their treatment relationship. Oncologists need support in providing independent SOs without harming trust relations.
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AIMS AND OBJECTIVES: Studies in adult medicine have shown that physicians base testing decisions on the patient's clinical condition but also consider other factors, including local practice or patient expectations. In pediatrics, physicians and parents jointly decide on behalf of a (young) child. This might demand more explicit and more complex deliberations, with sometimes conflicting interests. We explored pediatricians' considerations in diagnostic test ordering and the factors that influence their deliberation. METHOD: We performed in-depth, semistructured interviews with a purposively selected heterogeneous sample of 20 Dutch pediatricians. We analyzed transcribed interviews inductively using a constant comparative approach, and clustered data across interviews to derive common themes. RESULTS: Pediatricians perceived test-related burden in children higher compared with adults, and reported that avoiding an unjustified burden causes them to be more restrictive and deliberate in test ordering. They felt conflicted when parents desired testing or when guidelines recommended diagnostic tests pediatricians perceived as unnecessary. When parents demanded testing, they would explore parental concern, educate parents about harms and alternative explanations of symptoms, and advocate watchful waiting. Yet they reported sometimes performing tests to appease parents or to comply with guidelines, because of feared personal consequences in the case of adverse outcomes. CONCLUSION: We obtained an overview of the considerations that are weighed in pediatric test decisions. The comparatively strong focus on prevention of harm motivates pediatricians to critically appraise the added value of testing and drivers of low-value testing. Pediatricians' relatively restrictive approach to testing could provide an example for other disciplines. Improved guidelines and physician and patient education could help to withstand the perceived pressure to test.
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Padres , Médicos , Adulto , Niño , Humanos , Pediatras , Técnicas y Procedimientos DiagnósticosRESUMEN
Uncertainty is increasingly recognized as a crucial phenomenon throughout medical practice. Research on uncertainty so far has been scattered across disciplines, leading to a lack of consensus about what uncertainty represents and minimal integration of knowledge obtained within isolated disciplines. Currently, a comprehensive view of uncertainty which does justice to normatively or interactionally challenging healthcare settings is lacking. This impedes research teasing apart when and how uncertainty manifests, how all stakeholders experience and value it, and how it affects medical communication and decision-making. In this paper, we argue that we need a more integrated understanding of uncertainty. We illustrate our argument using the context of adolescent transgender care, in which uncertainty occurs in myriad ways. We first sketch how theories of uncertainty have emerged from isolated disciplines, leading to a lack of conceptual integration. Subsequently, we emphasize why it is problematic that no comprehensive approach to uncertainty has yet been developed, using examples from adolescent transgender care. Finally, we advocate an integrated approach of uncertainty to further advance empirical research and to ultimately benefit clinical practice.