Building a patient-centred nationwide integrated cardiac care registry: intermediate results from the Netherlands.

This paper presents an overview of the development of an integrated patient-centred cardiac care registry spanning the initial 5 years (September 2017 to December 2022). The Netherlands Heart Registration facilitates registration committees in which mandated cardiologists and cardiothoracic surgeons structurally evaluate quality of care using real-world data. With consistent attendance rates exceeding 60%, a valuable network is supported. Over time, the completeness level of the registry has increased. Presently, four out of six quality registries show over 95% completeness in variables that are part of the quality policies of cardiology and cardiothoracic surgery societies. Notably, 93% of the centres voluntarily report outcomes related to open heart surgery and (trans)catheter interventions publicly. Moreover, outcomes after implantable cardioverter-defibrillator and pacemaker procedures are transparently reported by 26 centres. Multiple innovation projects have been initiated by the committees, signalling a shift from publishing outcomes transparently to collaborative efforts in sharing healthcare processes and investigating improvement initiatives. The next steps will focus on the entire pathway of cardiac care for a specific medical condition instead of focusing solely on the outcomes of the procedures. This redirection of focus to a comprehensive assessment of the patient pathway in cardiac care ultimately aims to optimise outcomes for all patients.

Advanced Care Planning in Parkinson's Disease: In-depth Interviews With Patients on Experiences and Needs.

Introduction: Advance care planning (ACP) is an iterative process of discussing the needs, wishes, and preferences of patients regarding disease-specific and end-of-life issues. There is ample evidence that ACP improves the quality of life and promotes the autonomy of patients with cancer and motor neuron disease who have a high disease burden and shortened life expectancy. In Parkinson's disease (PD) though, knowledge about the experiences and preferences of patients regarding ACP is scarce, despite the major disease burden associated with PD. Aim: This study aims to explore the experiences, needs, and preferences of PD patients regarding the content and timing of ACP. Methods: In-depth interviews were conducted with a purposively selected sample of patients diagnosed with PD. Using a semi-structured topic list, the participants were asked about their prospects for a future living with PD and with whom they wanted to discuss this. Qualitative analysis was performed in parallel with data collection using a data-driven constant comparative approach. The transcribed interviews were coded and analyzed by two researchers using MAXQDA software. Results: Of all 20 patients (13 males; age 47-82; disease duration 1-27 years), most expressed a wish to talk about ACP with a healthcare provider, enabling them to anticipate the uncertain future. The majority of patients preferred their healthcare provider to initiate the discussion on ACP, preferably at an early stage of the disease. Nearly all patients expressed the wish to receive more information regarding the long-term impact of PD, although, the preferred timing varied between patients. They also perceived that their neurologist was primarily focused on medication and had little time to address their need for a more holistic approach toward living with PD. Conclusion: Our results suggest that PD patients are in need of discussing ACP with their healthcare provider (HCP), even in the early stages of the disease. In addition, PD patients perceive a lack of information on their disease course and miss guidance on available supportive care. We recommend HCPs to inquire the information requirements and preferences of patients regarding ACP regularly, starting soon after diagnosis.

A scoping review of practice recommendations for clinicians' communication of uncertainty.

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.

A randomized experimental study to test the effects of discussing uncertainty during cancer genetic counseling: different strategies, different outcomes?

Uncertainty is increasingly discussed during genetic counseling due to innovative techniques, e.g., multigene panel testing. Discussions about uncertainty may impact counselees variably, depending on counselors' communication styles. Ideally, the discussion of uncertainty enables counselees to cope with uncertainty and make well-informed decisions about testing. We examined the impact of how counselors convey uncertainty and address counselees' uncertainty, and explored the role of individual characteristics. Therefore, a randomized controlled experiment using videos was conducted. Former counselees (N = 224) viewed one video depicting a genetic consultation about multigene panel testing. The extent of counselors' communication of uncertainty (comprehensive vs. the essence) and their response to counselees' uncertainty expressions (providing information vs. providing space for emotions vs. normalizing and counterbalancing uncertainty) were systematically manipulated. Individual characteristics, e.g., uncertainty tolerance, were assessed, as well as outcome variables (primary outcomes: feelings of uncertainty and information recall). No effects were found on primary outcomes. Participants were most satisfied when the essence was communicated, combined with providing information or providing space responses (p = 0.002). Comprehensive information resulted in less perceived steering toward testing (p = 0.005). Participants with lower uncertainty tolerance or higher trait anxiety were less confident about their understanding when receiving comprehensive information (p = 0.025). Participants seeking information experienced less uncertainty (p = 0.003), and trusted their counselor more (p = 0.028), when the counselor used information providing responses. In sum, the impact of discussing uncertainty primarily depends on individual characteristics. Practical guidelines should address how to tailor the discussion of uncertainty.

Communication skills training for healthcare professionals in providing genetic counseling: A scoping literature review.

OBJECTIVE: Genetic counselors need advanced communication skills, particularly when discussing tests involving massively parallel sequencing. Increasingly, non-genetic healthcare professionals (HCPs) also need to provide genetic counseling. Communication skills training (CST) may equip HCPs with the required communication skills. This scoping review provides an overview of the content, approach, effectiveness and effective features of CSTs aimed at improving genetic and non-genetic HCPs' communication skills in providing genetic counseling. METHODS: Following the PRISMA-ScR statement, four databases were searched for articles. Two researchers independently screened titles and abstracts, and extracted data. When applicable, information on effectiveness and effective features of CST was collated. RESULTS: Twenty-three articles were included. Sixteen CSTs targeted non-genetic HCPs, five targeted genetic HCPs and two targeted both. Most CSTs addressed multiple communication behaviors and consisted of role play. CSTs were found to be effective for improving HCPs (mainly self-reported) attitudes and skills. Limited evidence on specific effective features of CST was found. CONCLUSIONS: There is a clear need for evidence on the effectiveness of CST on improving both HCPs' communication skills in the context of genetic counseling, and patient outcomes, and its specific effective features. PRACTICE IMPLICATIONS: Clinical practice could benefit from evidence-based CST for genetic and non-genetic HCPs.

The impact of communicating uncertain test results in cancer genetic counseling: A systematic mixed studies review.

OBJECTIVE: Cancer genetic counseling increasingly involves discussing uncertain test results, for example because multiple genes are sequenced simultaneously. This review was performed to provide insight into how counselors' communication of uncertain test results during genetic counseling for cancer affects counselors and counselees. METHODS: A systematic mixed studies review was undertaken to review research on the effects of communicating uncertain test results. Four databases were searched using a PICO search strategy. Study findings of articles meeting the inclusion criteria were synthesized narratively. RESULTS: Twenty-four articles were included. Uncertain test results encompassed either an inconclusive test result or a variant of unknown significance (VUS). Counselees involved almost exclusively women at risk of hereditary breast and/or ovarian cancer. None of the articles reported effects on counselor outcomes. Counselee outcomes were categorized as cognitive, affective or behavioral. Interpretation of a VUS was overall reported as difficult, and counselees' distress and worry were repeatedly found to decrease over time after the discussion of any uncertain test result. For most other outcomes, findings were sparse and/or inconsistent. CONCLUSION: Evidence on effects on counselee outcomes is scant and inconsistent. Future studies are warranted to provide insight into how counselees and counselors are affected. PRACTICE IMPLICATIONS: Clinical practice could benefit from guidelines on how to address uncertain test results during pre- and posttest genetic consultations.

'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 other types of counselors (p < 0.03). Our findings that counselors mainly communicate scientific uncertainties and use space-reducing responses imply that the way counselors address counselees' personal uncertainties and concerns during initial cancer genetic counseling is suboptimal.

Information exchange between patients with Lynch syndrome and their genetic and non-genetic health professionals: whose responsibility?

Individuals at high risk for Lynch syndrome (LS) should be offered genetic counselling, since preventive options are available. However, uptake of genetic services and follow-up care are currently suboptimal, possibly caused by inadequate exchange of information. Therefore, this qualitative study aims to gain insight in the process of information exchange between patients diagnosed with LS and their non-genetic (i.e., general practitioner, gastroenterologist, gynaecologist) and genetic (i.e., clinical geneticist or genetic counsellor) health professionals concerning referral for genetic counselling and follow-up care. Participants comprised 13 patients diagnosed with LS (8 index patients and 5 of their affected relatives) and 24 health professionals (6 general practitioners, 8 gastroenterologists, 6 gynaecologists and 4 genetic health professionals). Analysis of the interview transcripts was performed in parallel and again after the interviews, following guidelines for qualitative research and using MAXQDA software. The main finding is that patients may 'get lost' between health professionals who lack a clear overview of their own and each other's role and responsibilities in the referral and follow-up care for patients with possible LS. Education of non-genetic health professionals and optimisation of communication between health professionals might help to enable more timely diagnosis of LS and allow patients to address their doubts and questions to the most appropriate healthcare professional.

Uncertainty related to multigene panel testing for cancer: a qualitative study on counsellors' and counselees' views.

Multigene panel testing is mainly used to improve identification of genetic causes in families with characteristics fitting multiple possible cancer syndromes. This technique may yield uncertainty, for example when variants of unknown significance are identified. This study explores counsellors' and counselees' experiences with uncertainty, and how they discuss uncertainties and decide about multigene panel testing. Six focus groups were conducted including 38 counsellors. Twelve counselees who had received genetic counselling about a multigene panel test were interviewed. The focus group sessions and interviews were audio-recorded and transcribed verbatim. Transcripts were analysed inductively by two independent coders and data were examined to obtain a comprehensive list of themes. Counsellors identified several uncertainties, e.g. finding a variant of unknown significance, or detecting an unsolicited finding. Most difficulty was experienced in deciding what uncertain information to communicate to counselees and how to do so. The extent and manner of providing uncertain information differed between centres and between counsellors. Counsellors attached more value to counselees' preferences in decision making compared to less extended tests. Counselees experienced difficulty in recalling which uncertainties had been discussed during genetic counselling. They primarily reported to have experienced uncertainty about their own and their relatives' risk of developing cancer. Counselees felt they had had a say in the decision. This study showed that counsellors need more guidance on whether and how to convey uncertainty. Undesirable practice variation in the communication of uncertainty may be prevented by determining what information should minimally be discussed to enable informed decision making.

Uncertainty in consultations about genetic testing for cancer: an explorative observational study.

OBJECTIVE: Persons seeking cancer genetic counseling mainly aim to obtain information and certainty about their medical situation. However, the information that counselees receive often involves many uncertainties. To develop strategies to enable optimal communication about uncertainties, the spectrum of uncertainty expressed within cancer genetic counseling needs to be established. This study aimed to gain insight into the uncertainties verbally expressed by counselors and counselees. METHODS: Twenty-five consultations were audiotaped, transcribed and qualitatively analyzed. A coding scheme identifying all uncertainties was developed parallel to the coding of the transcripts. RESULTS: Several uncertainties were identified varying in their source (i.e. the cause of uncertainty) and the issues involved (i.e. the topic to which uncertainty pertained). The main sources of uncertainty were the unpredictability of the future and a lack of knowledge. Counselees also expressed uncertainty related to the amount and complexity of the information. Counselors expressed uncertainties mainly related to scientific issues, whereas counselees' uncertainty mainly related to personal and practical issues. CONCLUSION: A wide range of uncertainties was expressed by both groups. Counselors differ from counselees in the degree and types of uncertainty they express. PRACTICE IMPLICATIONS: Counselors should address scientific uncertainties during genetic counseling to increase awareness and understanding in counselees.

Patient-Driven Second Opinions in Oncology: A Systematic Review.

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.