The use of outcome data from quality registries to learn and improve; a Dutch nationwide quantitative analysis in five disease areas.

Background: Clinical quality registries (CQR) aid in measuring, collecting and monitoring outcome data but it is still unknown how these data are used by hospitals to improve the quality of care. This study assessed the current state of outcome-based quality improvement in the Netherlands in 2022 based on data from multiple disease areas and CQRs; cardiothoracic surgery (Netherlands Heart Registration [NHR]), cardiology (NHR), nephrology, (Nefrovision), intensive care (National Intensive Care Evaluation [NICE]), and orthopaedic surgery (Dutch Arthroplasty Register [LROI]).

Methods & Results: The Health Outcomes Management Evaluation (HOME) model was used to assess the current state of outcome-based quality improvement.

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.

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

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.

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.

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.

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.

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.

'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.

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.

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.

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.

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.