Anne Stiggelbout

Leiden University Medical Centre | LUMC · Biomedical Data Sciences

Objective: To identify patient-related characteristics considered to affect patient involvement in shared decision making (SDM) about treatment. Methods: We conducted a scoping review of qualitative studies. We searched for literature across seven databases until March 2022, and included qualitative studies that focused on associations between p...

Objectives To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To provide summarised information on their content, use and reported results. To provide an overview of interventions currently under development or investigation. Design The J...

Objective To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used. Methods We applied two search strategies: we included SDM models from an earlier review (strategy 1) and conducted a new search in eight databases to include papers other than describing an SDM model, such as original rese...

Background Patient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients’ risk perception, and help patients make decisions congruent with their expectations and values. Our aim was to develop an online PtDA to support kidney failure treatment modality decision-mak...

Background The large variety in symptoms and treatment effects across different persons with Parkinson’s disease (PD) warrants a personalized approach, ensuring that the best decision is made for each individual. We aimed to further clarify this process of personalized decision-making, from the perspective of medical professionals. Methods We audi...

Background Employment is an important factor in quality of life. For vestibular schwannoma (VS) patients, employment is not self-evident, because of the sequelae of the disease or its treatment and their effects on daily life. Objectives This study assessed employment status, sick leave (absenteeism) and being less productive at work (presenteeism...

Background: In Parkinson's disease (PD), several disease-modifying treatments are being tested in (pre-)clinical trials. To successfully implement such treatments, it is important to have insight into factors influencing the professionals' decision to start disease-modifying treatments in persons who are in the prodromal stage of PD. Objective:...

Dutch initiatives targeting shared decision-making (SDM) are still growing, supported by the government, the Federation of Patients’ Organisations, professional bodies and healthcare insurers. The large majority of patients prefers the SDM model. The Dutch are working hard to realise improvement in the application of SDM in daily clinical practice,...

Objectives To identify what patient-related characteristics have been reported to be associated with the occurrence of shared decision-making (SDM) about treatment. Design Scoping review. Eligibility criteria Peer-reviewed articles in English or Dutch reporting on associations between patient-related characteristics and the occurrence of SDM for...

Background: There is a great need for the development of personalized prediction models (PPMs) that can predict the rate of disease progression for persons with Parkinson's disease (PD), based on their individual characteristics. In this study, we aimed to clarify the perspective of persons diagnosed with PD on the value of such hypothetical PPMs....

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease (CKD), involving dialysis or conservative care. Shared decision-making (SDM) is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient...

Objective Vestibular schwannoma management aims to maintain optimal quality of life (QoL) while preventing severe sequelae of the tumor or its treatment. This study assessed long-term QoL of patients with vestibular schwannoma in relation to treatment modality and decisional regret. Study Design A longitudinal study, in which clinical and QoL data...

Background Although shared decision making is championed as the preferred model for patient care by patient organizations, researchers and medical professionals, its application in daily practice remains limited. We previously showed that residents more often prefer paternalistic decision making than their supervisors. Because both the views of res...

Background The aim of this study was to identify and summarize how value-based healthcare (VBHC) is conceptualized in the literature and implemented in hospitals. Furthermore, an overview was created of the effects of both the implementation of VBHC and the implementation strategies used. Methods A scoping review was conducted by searching online...

Objectives The integration of shared decision making (SDM) and patient-centered communication (PCC) is needed to actively involve patients in decision making. This study examined the relationship between shared decision making and patient-centered communication. Methods In 82 videotaped hospital outpatient consultations by 41 medical specialists f...

Objective To assess how patients prefer and perceive medical decision making, which factors are associated with their preferred and perceived decision-making roles, and whether observed involvement reflects patients’ perceived role. Methods We asked 781 patients visiting a medical specialist from 18 different disciplines to indicate their preferre...

Background Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate po...

BackgroundsResearch on shared decision-making (SDM) has mainly focused on decisions about treatment (e.g., medication or surgical procedures). Little is known about the decision-making process for the numerous other decisions in consultations.Objectives We assessed to what extent patients are actively involved in different decision types in medical...

BACKGROUND Shared decision-making (SDM) is particularly important in oncology since many treatments involve serious side effects, and treatment decisions involve a trade-off of benefits and risks. However, implementation of SDM in oncology care is challenging and clinicians state that it is difficult to apply SDM in their actual workplace. Training...

Background: Shared decision-making (SDM) is particularly important in oncology as many treatments involve serious side effects, and treatment decisions involve a trade-off between benefits and risks. However, the implementation of SDM in oncology care is challenging, and clinicians state that it is difficult to apply SDM in their actual workplace....

Purpose: Shared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference. Evidence for the effectiveness of these communication strategies to enhance patient involvement in treatment decision making is lacking. We tested the effe...

Objective: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and pe...

Background Current prediction tools for breast cancer outcomes are not tailored to the older patient, in whom competing risk strongly influences treatment effects. We aimed to develop and validate a prediction tool for 5-year recurrence, overall mortality, and other-cause mortality for older patients (aged ≥65 years) with early invasive breast canc...

Background Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients’ response rate. Methods A cohort of patients with a unilateral vestibular schwannoma (a condi...

Purpose: In cases of small- to medium-sized vestibular schwannomas, three management strategies can be opted for: active surveillance, surgery or radiotherapy. In these cases, the patient's preference is pivotal in decision-making. The aim of this study was to identify factors that influence a patient's decision for a particular management strateg...

Objectives We have developed two Dutch questionnaires to assess the shared decision-making (SDM) process in oncology; the iSHAREpatient and iSHAREphysician. In this study, we aimed to determine: scores, construct validity, test-retest agreement (iSHAREpatient), and inter-rater (iSHAREpatient-iSHAREphysician) agreement. Methods Physicians from seve...

Purpose Solutions to improve the implementation of shared decision making (SDM) in oncology often focus on the consultation, with limited effects. In this study, we used a service design perspective on the care path of locally advanced pancreatic cancer (LAPC). We aimed to understand how experiences of patients, their significant others, and medica...

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-sus...

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 commu...

Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second op...

Background Decision making regarding adjuvant therapy for high-risk endometrial cancer is complex. The aim of this study was to determine patients' and clinicians' minimally desired survival benefit to choose chemoradiotherapy over radiotherapy alone. Moreover, influencing factors and importance of positive and negative treatment effects (i.e. attr...

Introduction Previous studies have shown that available tools such as ‘Adjuvant Online!” are not able to accurately predict the prognosis of patients aged 65 years or older with breast cancer. Furthermore, all available tools predict prognosis in terms of recurrence-free survival or overall survival, whilst the risk of other-cause mortality is ofte...

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...

Background: Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients’ response rate. Methods: A cohort of patients with a unilateral vestibular schwannoma (a cond...

Objectives: Shared decision making (SDM) requires an active role from patients, which might be difficult for some. We aimed to identify what patients need to be ready (i.e., well-equipped and enabled) to participate in SDM about treatment, and what patient- and decision-related characteristics may influence readiness. Methods: We conducted semi-...

Achieving Person-Centred Health Systems - edited by Ellen Nolte August 2020

Introduction Approximately 20% of older patients with breast cancer either present with metastatic disease or develop distant metastases after early breast cancer. The aims of this study were to assess the prevalence of psychosocial problems in older patients with metastatic breast cancer, and to assess longitudinal changes in functional status, ps...

Objective This study aimed to assess psychological functioning, quality of life, and regret about screening after a positive FIT and subsequent colonoscopy, and to evaluate changes over time. Methods This is a prospective cohort study. Individuals aged 55‐75 with a positive Fecal Immunochemical Test (FIT) that were referred for colonoscopy between...

Background: Existing measures to assess shared decision making (SDM) have often been developed based on an ill-defined underlying construct, and many assess physician behaviours only or focus on a single patient-physician encounter. Objective: To (a) develop a patient and a physician questionnaire to measure SDM in oncology and (b) determine the...

Introduction Patients with advanced kidney disease (AKD) have to make difficult treatment modality decisions as their disease progresses towards end-stage kidney disease. International guidelines in nephrology suggest shared decision-making (SDM) to help patients make timely treatment modality decisions that align with their values and preferences....

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...

Background. Adjuvant systemic treatment for early stage breast cancer significantly reduces the risk of mortality but is associated with side effects, reducing patients’ quality of life. Decisions about adjuvant treatment are preference sensitive and are thus ideally suited to a shared decision making (SDM) approach. Whether and how SDM affects pat...

Objective Many treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations. Design We performed a...

Objectives To (1) provide an up-to-date overview of shared decision making (SDM)-models, (2) give insight in the prominence of components present in SDM-models, (3) describe who is identified as responsible within the components (patient, healthcare professional, both, none), (4) show the occurrence of SDM-components over time, and (5) present an S...

Rationale, aims, and objectives: People worldwide are affected by psychiatric disorders that lack a "best" treatment option. The role of shared decision-making (SDM) in psychiatric care seems evident, yet remains limited. Research on SDM in specialized mental health is scarce, concentrating on patients with depressive disorder or psychiatric disor...

Objective: To assess the numerical probabilities that individuals associate with frequently-used verbal labels relating to treatment outcomes and their association with medical context, age, gender, educational level, health literacy, and numeracy. Methods: Verbal labels (N = 11) were extracted from N = 90 audiotaped decision encounters in oncol...

Objective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance of these exists. The tools themselves and their purposes are not always clearly defined; creating challenges for developers and users (professionals, pa...

Uncertain evidence and the uniqueness of a patient’s health care issues often make it difficult to identify the best course of care. These instances are becoming increasingly common as more people live longer with multiple chronic conditions and care becomes more complicated. Clinical decisions may involve screening or treatment with new toxic drug...

Introduction: Patient preferences are often not discussed in treatment decisions in oncology. We introduced an online values clarification method (VCM) to help newly diagnosed rectal cancer patients participate in shared decision making about short-course preoperative radiotherapy. Material and Methods: We offered a link to the VCM to a subset of c...

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...

Objective: To develop and validate an outcome scale for the cervical radicular syndrome and to build a mapping, predicting EQ-5D utility from the new scale. Study design and setting: An item pool was developed based on literature and patient and clinician interviews. Item selection was based on symptomatology, factor analysis, and internal consiste...

Objective To construct a model of shared decision making (SDM) about cancer treatment by conducting an extensive consultation of stakeholders, informed by the literature. Methods We interviewed 76 stakeholders: cancer patients, potential future patients, oncologists, nurses, and SDM‐researchers. We asked: “If I say ‘Doctors and patients making dec...

If the arguments to support a recommendation are partly implicit, the free exchange of ideas between discussants can be hampered. In this paper, we will focus on the potential pitfall for clinicians when informing patients about treatment options: implicit persuasion. We will describe a set of implicitly persuasive behaviors observed during decisio...

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...

Patients with cancer often do not have an accurate perception of their prognosis and the risks and side effects associated with potential treatments. Research has highlighted several reasons for these information gaps. Where more than one medically acceptable treatment is available, doctors may have a strong preference for a particular treatment op...

Objective: To investigate treatment selection in a naturalistic sample of MDD outpatients and the factors influencing treatment selection in specialized psychiatric care. Method: Multinomial Logistic Regression analysis investigated associations between treatment selection and patients' sociodemographic and clinical characteristics, using retros...

Objective: To prioritize strategies to implement shared decision-making (SDM) in daily practice, resulting in an agenda for a nationwide approach. Methods: This was a qualitative, exploratory investigation involving: Interviews (N = 43) to elicit perceived barriers to and facilitators of change, focus group discussions (N = 51) to develop an imp...

Objective To inventory instruments assessing the process of shared decision making and appraise their measurement quality, taking into account the methodological quality of their validation studies. Methods In a systematic review we searched seven databases (PubMed, Embase, Emcare, Cochrane, PsycINFO, Web of Science, Academic Search Premier) for s...

Methodological quality and quality of measurement properties of each article per measurement property and instrument version. Note: Measurement error is not presented as one of the measurement properties because it has not been evaluated in any of the articles. M = result of the methodological quality appraisal with a score on the 4-point rating sc...

BACKGROUND Although Advance Care Planning (ACP) has shown to improve outcomes in other patient groups, including patient/family satisfaction and the quality of end of life (EOL) care, it is unknown if implementation of an ACP program would be feasible in daily clinical practice for glioblastoma patients. In phase I of this feasibility study, we aim...

Background: Older patients are believed to prefer a more passive role in treatment decision making, but studies reporting this relation were conducted over a decade ago or were retrospective. We prospectively compared younger (40-64 years) versus older (≥ 65 years) breast cancer patients' preferences for decision-making roles and their perceived a...

This paper addresses the potential contribution of service design for improving the implementation of shared decision-making in healthcare. The iterative approach of design research is compared with the more linear, (social) scientific approaches often seen in health services research. Five foundational principles of service design are explored reg...

Objectives: Implicit associations influence behaviour, but their impact on cancer screening intentions is unknown. Methods: We assessed implicit associations with cervical cancer screening using an evaluative priming task. Participants were shown primes ('Pap test', neutral or non-word) followed by positive or negative target words. The test is...

Importance: Online prognostication tools such as PREDICT and Adjuvant! are increasingly used in clinical practice by oncologists to inform patients and guide treatment decisions about adjuvant systemic therapy. However, their validity for young breast cancer patients is debated. Objective: To assess first, the prognostic accuracy of PREDICT's an...

Currently, shared decision making (SDM) is on the agenda among target patient representative groups, policy makers and professional bodies. Although the International Conference for Shared Decision Making (ISDM) 2011 generated a positive boost, hesitation was also felt among Dutch clinicians, who are challenged by many new tasks. No hesitation is s...

Objective In vestibular schwannoma treatment, the choice among treatment modalities is controversial. The first aim of this study was to examine the quality of life of patients with vestibular schwannoma having undergone observation, radiation therapy, or microsurgical resection. The second aim was to examine the relationship between perceived symp...

Background: It is still undecided if endoscopic laser surgery or radiotherapy is the preferable treatment in extended T1 and limited T2 glottic tumors. Health utilities assessed from patients can aid in decision-making. Methods: Patients treated for extended T1 or limited T2 glottic carcinoma by laser surgery (n = 12) or radiotherapy (n = 14) as...

Purpose: As older women with breast cancer (BC) are underrepresented in trials, it is often unclear what represents the best treatment option for this patient group. To understand how oncologists approach the management of BC in older patients, we assessed their treatment recommendations. Methods: In an online survey, 106 surgical, 37 radiation...

Background: A Dutch online patient decision aid to support prosthetic heart valve selection was recently developed. A multicenter randomized controlled trial was conducted to assess whether use of the patient decision aid results in optimization of shared decision making in prosthetic heart valve selection. Methods and results: In a 5-center ran...

Objective: To compare long-term morbidity and quality of life after primary surgery or primary radiotherapy for stage IB/II cervical cancer. Methods: A cross-sectional study was performed. Patients treated for stage IB/II cervical cancer between 2000 and 2010 were approached to participate. Primary treatment consisted of radical hysterectomy wit...

"Nothing about me without me"1 and "Really putting patients at the centre of healthcare"2 are just two expressions of the call for patient involvement and shared decision making. For many, shared decision making is becoming the norm, at least in preference sensitive decisions, but for others it is seen as just a fashionable phrase, to be followed b...

This paper reports on the feasibility and preliminary effects of a decision aid (DA) about female fertility preservation (FP). We conducted a pilot multicentre randomized controlled trial of women with breast cancer aged 18-40 who were randomized to brochures or the DA. Over 18 months, 62 women were eligible, of which 42 were invited by their healt...

Despite multimodal treatment with surgery, radiotherapy and chemotherapy, glioblastoma is an incurable disease with a poor prognosis. During the disease course, glioblastoma patients may experience progressive neurological deficits, symptoms of increased intracranial pressure such as drowsiness and headache, incontinence, seizures and progressive c...