‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations

Pre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about panel testing. It is presently unknown whether and how uncertainty is discussed during initial cancer genetic counseling. We therefore investigated whether and how counselors discuss and address uncertainty, and the extent of shared decision-making (SDM), and explored associations between counselors’ communication and their characteristics in consultations on panel testing for cancer. For this purpose, consultations of counselors discussing a multigene panel with a simulated patient were videotaped. Simulated patients represented a counselee who had had multiple cancer types, according to a script. Before and afterwards, counselors completed a survey. Counselors’ uncertainty expressions, initiating and the framing of expressions, and their verbal responses to scripted uncertainties of the simulated patient were coded by two researchers independently. Coding was done according to a pre-developed coding scheme using The Observer XT software for observational analysis. Additionally, the degree of SDM was assessed by two observers. Correlation and regression analyses were performed to assess associations of communicated uncertainties, responses and the extent of SDM, with counselors’ background characteristics. In total, twenty-nine counselors, including clinical geneticists, genetic counselors, physician assistants-in-training, residents and interns, participated of whom working experience varied between 0 and 25 years. Counselors expressed uncertainties mainly regarding scientific topics (94%) and on their own initiative (95%). Most expressions were framed directly (77%), e.g. We don’t know, and were emotionally neutral (59%; without a positive/negative value). Counselors mainly responded to uncertainties of the simulated patient by explicitly referring to the uncertainty (69%), without providing space for further disclosure (66%). More experienced counselors provided less space to further disclose uncertainty (p < 0.02), and clinical geneticists scored lower on SDM compared with o

Factors associated with cancer worries in individuals participating in annual pancreatic cancer surveillance

It is important to adequately and timely identify individuals with cancer worries amongst participants in a pancreatic ductal adenocarcinoma (PDAC) surveillance program, because they could benefit from psychosocial support to decrease distress. Therefore, the aim of this study was to assess both psychosocial and clinical factors associated with cancer worries. High-risk individuals participating in PDAC-surveillance were invited to annually complete a cancer worry scale (CWS) questionnaire which was sent after counseling by the clinical geneticist (T0), after intake for participation in PDAC-surveillance (T1), and then annually after every MRI and endoscopic ultrasonography (EUS) (T2 and furth

Stress, satisfaction and burnout among Dutch medical specialists

BACKGROUND: Stress and stress-related illnesses are increasing among medical specialists. This threatens the quality of patient care. In this study we investigated (a) levels of job stress and job satisfaction among medical specialists, (b) factors contributing to stress and satisfaction and (c) the effect of stress and satisfaction on burnout. METHODS: A questionnaire was mailed to a random sample of 2400 Dutch medical specialists. Measures included job stress, job satisfaction, burnout, personal characteristics, job characteristics and perceived working conditions. RESULTS: The final response rate was 63%. Of the respondents, 55% acknowledged high levels of stress, and 81% reported high job satisfaction. Personal and job characteristics explained 2%–6% of the variance in job stress and satisfaction. Perceived working conditions were more important, explaining 24% of the variance in job stress and 34% of the variance in job satisfaction. Among perceived working conditions, the interference of work on home life (odds ratio [OR] 1.54, 95% confidence interval [CI] 1.35–1.76) and not being able to live up to one's professional standards (OR 1.57, 95% CI 1.37–1.80) were most related to stress. Feeling poorly managed and resourced (OR 2.07, 95% CI 1.76–2.43) diminished job satisfaction. Burnout was explained by both high stress and low satisfaction (41% of variance explained) rather than by stress alone. INTERPRETATION: Our study showed a protective effect of job satisfaction against the negative consequences of work stress as well as the importance of organizational rather than personal factors in managing both stress and satisfaction

Coding patient-centred behaviour in the medical encounter

A patient-centred approach is increasingly advocated and incorporated in medical education. Due to its multi-dimensionality, however, the concept of patient-centredness appears to be hard to measure and, consequently, to evaluate. The objective of this study was to develop an instrument to measure patient-centredness in line with one central dimension, i.e. physicians' explorative communication skills: the tendency to encourage (or discourage) patients to express their perspective on illness and treatment, by displaying facilitating and inhibiting behaviours. The paper describes the development of the patient-centred behaviour coding instrument (PBCI), and first results of validity and reliability of the instrument. The study was conducted in the outpatient division of an academic teaching hospital in The Netherlands, where follow-up encounters were videotaped and coded. Participants were 30 residents and specialists in general internal medicine, rheumatology and gastro-enterology, and 323 patients having a (video-taped) follow-up appointment with one of these physicians. All recorded consultations were coded using the PBCI. Statistical analyses verified the existence of two dimensions of the PBCI: facilitating and inhibiting behaviours. Interestingly, open and closed questions generally appeared to be indicative of both the facilitating and the inhibiting dimension; only open and closed questions with a psycho-social content were unambiguously classified as facilitating behaviours. Reliability of the facilitating behaviours was high, while reliability of the inhibiting behaviours was moderate. Besides infrequent observations of the inhibiting behaviours, low reliability was partly due to individual inter-rater variability. A global rating of patient-centredness appeared to correlate with the two dimensions in the expected direction: positively with the facilitating and negatively with the inhibiting dimension, indicating the convergent validity of the instrument.Patient-centredness Physician-patient communication Patient-centred behaviour coding instrument The Netherlands

Medical decision making for older patients during multidisciplinary oncology team meetings

Objectives: Multidisciplinary team meetings aim to facilitate efficient and accurate communication surrounding the complex process of treatment decision making for older patients with cancer. This process is even more complicated for older (≥70 years) patients as the lack of empirical evidence on treatment regimens in patients with age-related problems such as comorbidity and polypharmacy, necessitates a patient-centred approach.This study investigates the decision making process for older patients with cancer during multidisciplinary team meetings and the extent to which geriatric evaluation and geriatric expertise contribute to this process. Methods: Non-participant observations of 171 cases (≥70 years) during 30 multidisciplinary team meetings in five hospitals and systematically analysed using a medical decision making framework. All cases were in patients with colon or rectal cancer. Results: First, not all steps from the medical decision making framework were followed. Second, we found limited use of patient-centred information such as (age-related) patient characteristics and patient preferences during the decision making process. Third, a geriatric perspective was largely missing in multidisciplinary team meetings. Conclusions: This study uncovers gaps in the treatment decision making process for older patients with cancer during multidisciplinary team meetings. In particular individual vulnerabilities and patient wishes are often neglected

Communication skills training for healthcare professionals in oncology over the past decade: a systematic review of reviews

PURPOSE OF REVIEW: Effective communication in cancer care requires complex communication skills of healthcare professionals (HCPs), which can be advanced by communication skills training (CST). The number of empirical studies on CST has grown steadily over the last decade. However, controversies on CST abound. The aim of this review of reviews is to summarize evidence for the effectiveness of CST in oncology as well as for effective CST features (intensity, format and content) and to synthesize the current opinion on CST. RECENT FINDINGS: The evidence synthesized from multiple reviews supported the effect of CST on HCPs' communication skills. Yet, the certainty of evidence was limited as studies were diverse and effects heterogeneous. Furthermore, limited evidence was found for effective CST intensity, format and content. Authors of the reviews advocated further high-quality research with robust outcome measurement to establish the most essential features of CST and recommended implementation of CST in the standard training of HCPs with continuous supervision. SUMMARY: CST can probably improve some aspects of HCPs' communication skills. Despite the uncertain evidence, implementation of CST into clinical practice is widely advocated and specific recommendations regarding intensity and format are provided. Evidence to justify and substantiate implementation efforts is needed

Determinants of physicians' patient-centred behaviour in the medical specialist encounter

It has been suggested that patient-centred communication does not necessarily translate into a 'one-size fits all' approach, but rather that physicians should use a flexible style and adapt to the particular needs of their patients. This paper examines variability in physicians' patient-centred behaviour in medical specialist encounters, and determines whether patient, visit, and physician characteristics influence this variability. Participants were 30 residents and specialists in internal medicine at an academic teaching hospital in The Netherlands, and 323 patients having a (videotaped) outpatient follow-up appointment. Physicians and patients completed a questionnaire prior to the encounter. Consultations were coded using the Patient-centred Behaviour Coding Instrument (PBCI); physicians' patient-centred behaviour was determined by behaviours that facilitated rather than inhibited the patient's expression of his/her perspective. The results show that physicians differ in their communicative behaviour (i.e. inter-individual variability): some internists had a more 'patient-centred' communication style and others less so. At the same time, physicians show intra-individual variation; apparently they adjust their style according to the situation. Physicians displayed more facilitating behaviour when patients were older, reported more physical symptoms, when they rated patients' health condition as more severe and when the physician was a woman. Physicians also displayed more inhibiting behaviour when patients reported more physical symptoms and when the physician rated patients' health condition as more severe. Apparently, sicker patients were targets of both greater facilitation and greater inhibition. Variability in physicians' facilitating and inhibiting behaviour was explained by patient characteristics, i.e. patients' age and health condition, and--with the exception of physician gender--not by physician or visit characteristics. This indicates that physician patient-centred behaviour is related to the type of patient visiting, especially in relation to the seriousness of symptoms.The Netherlands Patient-centredness Physician-patient relations Communication Gender

Optimising eHealth tools for older patients : Collaborative redesign of a hospital website

Most hospital websites have not been developed in collaboration with patients and, therefore, rarely take into account the preferences and abilities of older patients. This study describes the systematic redesign of an existing hospital website in a co-design process with patients and professional stakeholders (e.g. researchers, physicians, nurses, department heads, policymakers, website designers), with the aim to make it more user-friendly for older patients with colorectal cancer (CRC). The redesign process consisted of three phases, where (I) both existing content and design were evaluated among CRC patients; (II) a prototype website was developed based on these insights; which (III) was evaluated again before making final adjustments. Mixed research methods were used for the redesign process. Specifically, insights from existing literature, outcomes from qualitative and quantitative empirical studies conducted by our team, and expert knowledge from relevant stakeholders, were collected and discussed in multidisciplinary consensus meetings, and served as input for the redesigned website. While the existing website was evaluated poorly, the qualitative evaluation of the prototype website in phase 3 showed that the newly redesigned website was usable for older CRC patients. A practical roadmap on how to collaboratively redesign and optimise existing eHealth tools to make them suitable for and operational in clinical settings is provided

Optimising eHealth tools for older patients : Collaborative redesign of a hospital website

Most hospital websites have not been developed in collaboration with patients and, therefore, rarely take into account the preferences and abilities of older patients. This study describes the systematic redesign of an existing hospital website in a co-design process with patients and professional stakeholders (e.g. researchers, physicians, nurses, department heads, policymakers, website designers), with the aim to make it more user-friendly for older patients with colorectal cancer (CRC). The redesign process consisted of three phases, where (I) both existing content and design were evaluated among CRC patients; (II) a prototype website was developed based on these insights; which (III) was evaluated again before making final adjustments. Mixed research methods were used for the redesign process. Specifically, insights from existing literature, outcomes from qualitative and quantitative empirical studies conducted by our team, and expert knowledge from relevant stakeholders, were collected and discussed in multidisciplinary consensus meetings, and served as input for the redesigned website. While the existing website was evaluated poorly, the qualitative evaluation of the prototype website in phase 3 showed that the newly redesigned website was usable for older CRC patients. A practical roadmap on how to collaboratively redesign and optimise existing eHealth tools to make them suitable for and operational in clinical settings is provided