Showing papers by "Anne M. Stiggelbout published in 2012"
TL;DR: Although many clinicians feel they already use shared decision making, research shows a perception-reality gap and A M Stiggelbout and colleagues discuss why it is important and highlight some best practices.
Abstract: Although many clinicians feel they already use shared decision making, research shows a perception-reality gap. A M Stiggelbout and colleagues discuss why it is important and highlight some best practices
780 citations
TL;DR: In this article, the effect of perception on the outcome of genetic counseling for hereditary breast/ovarian cancer was quantified, and it was found that the actually communicated pathogenic mutation and uninformative result directly predicted medical decisions, i.e. intended and performed surgery of breasts/ovaries.
Abstract: Background: It has been hypothesized that the Outcomes of DNA testing (O) are better predicted and/or mediated by the counselees' Perception P) than by the actually communicated genetic Information (I). In this study, we aimed at quantifying the effect that perception has in genetic counseling for hereditary breast/ovarian cancer. Methods: Two hundred and four women, who had previously been tested for BRCA1/2, participated in a retrospective questionnaire study; 93% had cancer. Communicated Information (I) consisted of cancer risks and BRCA1/2 test result category: unclassified variant (n=76), uninformative (n=76), pathogenic mutation (n=51). Four perception variables (P) were included: the counselees' recollections and interpretations of both the cancer risks and the likelihood that the cancer in their family is heritable. The Outcome variables (O) included life changes, counselees' medical decisions, BRCA-related self-concept, current psychological wellbeing, and quality-of-life. Bootstrap mediation analyses determined whether relationships were direct (I-O or P-O) or indirect through the mediation of perception (I-P-O). Results: The actually communicated pathogenic mutation and uninformative result directly predicted medical decisions (I-O), i. e. intended and performed surgery of breasts/ovaries. All other outcomes were only directly predicted by the counselees' perception (recollection and interpretation) of their cancer risks and heredity likelihood (P-O), or this perception mediated the outcome (I-P-O). However, this perception was significantly different from the actually communicated cancer risks (I-P). Unclassified variants were inaccurately perceived (mostly overestimated); this misperception predicted both psychological outcomes and radical medical decisions. Discussion: Genetic counselors need to explicitly address the counselee's interpretations and intended medical decisions. In case of misinterpretations, additional counseling might be offered. Communication of unclassified variants needs special attention given the pitfall of overestimation of risk. Copyright (C) 2010 John Wiley & Sons, Ltd.
75 citations
TL;DR: Reduced HRQoL is associated with higher BMI, smoking and higher expectations prior to donation, and may be used to develop a screening instrument to select donors at high risk for reduced HRZoL.
Abstract: Health related quality of life (HRQoL) of living kidney donors on average is good, but some donors experience a low HRQoL after donation. This study assessed the prevalence of reduced HRQoL and explored associations with pre- and post-donation variables. 316 donors (response rate 74%) who donated a kidney between 1997 and 2009 filled in a questionnaire. HRQoL was measured using the Short-Form 36; fatigue using the Multidimensional Fatigue Inventory; societal participation using the Utrecht Scale for Evaluation of Rehabilitation-Participation. Donors on average had better HRQoL than the general population. However, 12% had a reduced physical (PCS) and 18% a reduced mental (MCS) HRQoL. Donors with reduced HRQoL reported greater fatigue (P < 0.01), lower societal participation (P < 0.01) and showed a trend towards statistical significance in experiencing more donor-recipient relationship changes (P = 0.07). Prior to donation, donors with reduced PCS had a higher BMI (P < 0.05) and more often smoked (P < 0.05). Donors with reduced MCS had higher expectations (P < 0.05). Reduced HRQoL is associated with higher BMI, smoking and higher expectations prior to donation. These results may be used to develop a screening instrument to select donors at high risk for reduced HRQoL.
49 citations
TL;DR: Expected relationship changes and concerns about the donor’s health lead some kidney patients to wait for a deceased donor, despite having a potential living donor available.
Abstract: Limited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced. We conducted 6 focus groups in 47 of 114 invited individuals (41%), asking retrospectively about motivations and decision making around transplantation. We used qualitative and quantitative methods to analyze the focus group transcripts. Most deceased donor kidney recipients had a potential living donor available which they refused or did not want. They mostly waited for a deceased donor because of concern for the donor’s health (75%). They more often expected negative relationship changes than living donor kidney recipients (75% vs. 27%, p = 0.01) who also expected positive changes. Living donor kidney recipients mostly accepted the kidney to improve their own quality of life (47%). Donors mostly donated a kidney because transplantation would make the recipient less dependent (25%). After transplantation both positive and negative relationship changes are experienced. Expected relationship changes and concerns about the donor’s health lead some kidney patients to wait for a deceased donor, despite having a potential living donor available. Further research is needed to assess whether this concerns a selected group.
32 citations
TL;DR: The outcomes of DNA-testing were better predicted by the counselees' perception than by the actually given genetic-information, and genetic-counselors are recommended to have tailored, interactive dialogues about the counslee's perception.
31 citations
TL;DR: The aim of this study was to obtain feedback from, and reach consensus among different experts regarding the information provision about FP and use of a web-based decision aid about FP to create optimal conditions for the implementation of the DA-website, as the authors prepare to implement a DA about FP in the Netherlands.
Abstract: Background. The aim of this study was to obtain feedback from, and reach consensus among different experts who are or have been involved in information provision about FP, regarding the (procedure of) information provision about Fertility Preservation (FP) and use of a web-based decision aid (DA) about FP to create optimal conditions for the implementation of the DA-website, as we prepare to implement a DA about FP in the Netherlands. Material and methods. A two round Delphi study in which experts (patients and clinicians) rated their (dis)agreement with a list of statements (Rounds 1, 2), and additional online forum to discuss dissensus (Round 3). We assessed opinions about FP, web-based DAs, and about the procedure of informing patients. Answer categories ranged from 1 (totally disagree) to 5 (totally agree). Consensus was considered significant when at least 80% of the experts scored either the lowest or the highest two categories. Results. Experts reached rapid consensus on all five statements...
21 citations
Book Chapter•
01 Jan 2012
TL;DR: It was found that existing VCMs were used for a variety of different decisions, rarely referenced underlying theory for their design, but generally were well described in regard to their development process.
Abstract: First paragraph: Our evidence review found that existing VCMs were used for a variety of different decisions, rarely referenced underlying theory for their design, but generally were well described in regard to their development process Listing the pros and cons of a decision was the most common method used The 13 trials that compared decision support with or without VCMs reached mixed results: some found that VCMs improved some decision-making processes, while others found no effect
17 citations
TL;DR: This work has shown that patients tend to assign higher utilities to health states compared with the general public, and several explanations have been given for this difference including focusing illusion, adaptation, and adaptation.
Abstract: Background Patients tend to assign higher utilities to health states compared with the general public. Several explanations have been given for this difference including focusing illusion -, caused in part by the sparseness of a health state description such as the EQ-5D -, and adaptation.
Objective We investigated whether patients and the public differ in which dimensions they find important. Furthermore, we compared whether the dimensions named by patients and the public obtained higher rankings of importance compared with the predefined EQ-5D dimensions. Within each nominated dimension we investigated whether the public used a more negative frame compared with patients. In addition, adaptation was investigated by comparing patients with high levels of adaptation and patients with low levels of adaptation.
Design Data were collected using semistructured interviews among 124 patients with rheumatoid arthritis and 64 members of the public. Participants indicated which aspects are important to them when they think about their life having rheumatoid arthritis and rated the importance of these aspects and of the EQ-5D dimensions.
Results In contrast to patients, the public named more often aspects related to sports and mobility, leisure activities and work and framed these aspects negatively. Compared with self-rated dimensions, the public ranked the EQ-5D dimensions as more important whereas patients found both groups of aspects equally important. Patients who showed higher levels of adaptation did not differ significantly from patients with lower levels.
Conclusion The public is focused on life domains that are negatively influenced by the described health state whereas patients are focused on both the positive and negative aspects of their lives.
16 citations
TL;DR: The barriers and facilitators associated with the everyday embedding of SDM for sciatica patients can be used as an example for implementing SDM in other patient groups receiving multidisciplinary complex care and can be generalized to other countries with similar context.
Abstract: Background: Sciatica is a common condition worldwide that is characterized by radiating leg pain and regularly caused by a herniated disc with nerve root compression. Sciatica patients with persisting leg pain after six to eight weeks were found to have similar clinical outcomes and associated costs after prolonged conservative treatment or surgery at one year follow-up. Guidelines recommend that the team of professionals involved in sciatica care and patients jointly decide about treatment options, so-called interprofessional shared decision making (SDM). However, there are strong indications that SDM for sciatica patients is not integrated in daily practice. We designed a study aiming to explore the barriers and facilitators associated with the everyday embedding of SDM for sciatica patients. All related relevant professionals and patients are involved to develop a tailored strategy to implement SDM for sciatica patients. Methods: The study consists of two phases: identification of barriers and facilitators and development of an implementation strategy. First, barriers and facilitators are explored using semi-structured interviews among eight professionals of each (para)medical discipline involved in sciatica care (general practitioners, physical therapists, neurologists, neurosurgeons, and orthopedic surgeons). In addition, three focus groups will be conducted among patients. Second, the identified barriers and facilitators will be ranked using a questionnaire among a representative Dutch sample of 200 GPs, 200 physical therapists, 200 neurologists, all 124 neurosurgeons, 200 orthopedic surgeons, and 100 patients. A tailored team-based implementation strategy will be developed based on the results of the first phase using the principles of intervention mapping and an expert panel. Discussion: Little is known about effective strategies to increase the uptake of SDM. Most implementation strategies only target a single discipline, whereas multiple disciplines are involved in SDM among sciatica patients. The results of this study can be used as an example for implementing SDM in other patient groups receiving multidisciplinary complex care (e.g., elderly) and can be generalized to other countries with similar context, thereby contributing to a worldwide increase of SDM in preference sensitive choices.
7 citations
TL;DR: The present study aims to measure the relative importance of age, gender, socioeconomic status, pre-intervention health state, treatment effect, chance of treatment success and number of people in need of the intervention, to adjust quality-adjusted life year maximisation in accordance with societal preferences.
Abstract: Introduction Cost-effectiveness is an important criterion in the decision to cover interventions in health insurance packages. One of the outcome measures, the quality-adjusted life year, has been criticised on its assumptions and implications concerning life expectancy and quality of life. Several studies have been conducted that measured societal preferences concerning healthcare rationing decisions. These studies mainly focused on one attribute. To adjust quality-adjusted life year maximisation in accordance with societal preferences, the relative importance of attributes should be studied. The present study aims to measure the relative importance of age, gender, socioeconomic status, pre-intervention health state, treatment effect, chance of treatment success and number of people in need of the intervention. A secondary objective is to compare the validity of the willingness to pay method with the validity of a relatively new preference elicitation method, best–worst scaling. Methods and analysis A representative sample of 2000 Dutch citizens, over 18 years of age, are recruited to complete a web-based survey containing treatment scenarios. The scenarios present different levels of attributes. Respondents are asked to select one of the four scenarios that they prefer to be covered by the Dutch standard health insurance package and one that they prefer not to be covered. They are also asked to indicate how much they are willing to pay for each treatment scenario. At the end of the survey, respondents are asked to rate every attribute on a 1–10 scale. Two versions of the questionnaire are developed which differ on the framing, that is, treatments can be added to or removed from the insurance package. The data will be analysed by means of sequential conditional logit analysis (best–worst scaling) and analysis of variance (willingness to pay). Ethics and dissemination The protocol is reviewed and approved by the medical ethical committee of the University Medical Center Leiden.
5 citations
TL;DR: Patients’ health state valuations change over time, over and above the change expected by the rehabilitation process, and this change is partly explained by adaptation.
Abstract: Objectives: One of the explanations for the difference between health state utilities elicited from patients and the public-often provided but seldom studied-is adaptation. The influence of adaptation on utilities was investigated in patients with spinal cord injury. Methods: Interviews were held at 3 time points (T1, after admission to the rehabilitation center; T2, during active rehabilitation; T3, at least half a year after discharge). At T1, 60 patients were interviewed; 10 patients withdrew at T2 and T3. At all time points, patients were asked to value their own health and a health state description of rheumatoid arthritis on a time trade-off and a visual analogue scale. The Barthel Index, a measure of independence from help in activities of daily living, and the adjustment ladder were filled out. Main analyses were performed using mixed linear models taking the time-dependent covariates (Barthel Index and adjustment ladder) into account. Results: Time trade-off valuations for patients' own health changed over time, even after correction for gain in independence from help in activities of daily living, F(2, 59) = 8.86, P <0.001. This change was related to overall adaptation. Both a main effect for adaptation, F(87, 1) = 10.05; P = 0.002, and an interaction effect between adaptation and time, F(41, 1)= 4.10, P = 0.024, were seen for time trade-off valuations. Valuations given for one's own health on the visual analogue scale did not significantly change over time, nor did the valuations for the hypothetical health state. Conclusion: Patients' health state valuations change over time, over and above the change expected by the rehabilitation process, and this change is partly explained by adaptation. Experience with a chronic illness did not lead to change in valuations of hypothetical health states.
01 Jan 2012
TL;DR: In this article, the short-term impact of DNA-testing with an extended model was studied, where the authors found that the predicted genetic information and the contextual variables predicted the counselees' perception, but did not directly predict any outcomes.
Abstract: A B S T R A C T Objective: Previous studies suggest that learning a DNA-test-result has no direct impact on the medicaldecisions and psychological well-being of counselees. Their perception, especially their recollections and interpretations of their cancer-risks and heredity, predict and/or mediate this impact. These studies were criticized for their small range of predictors, mediators, outcomes and contextual factors. We studied the short-term impact of DNA-testing with an extended model. Methods: Three months after disclosure of BRCA1/2-test-results, we sent counselees a questionnaire about their perception, medical and psychological outcomes, and medical, familial and psychological contexts. 248 affected women participated; 30 had received pathogenic-mutations, 16 unclassifiedvariants and 202 uninformative-results. Results: The actually communicated genetic-information and the contextual variables predicted the counselees’ perception, but did not directly predict any outcomes. The counselees’ perception predicted and/or completely mediated the counselees’ medical intentions and behavior, physical and psychological life-changes, stigma, mastery, negativity and cancer-worries. Short-term distress was related to the perception not only of their own risks, but also of their relatives’ risks and heredity
01 Jan 2012
TL;DR: De Roos, 32, werkt achter de schermen in haar eigen restaurant, and geneert zich voor haar uiterlijk and mijdt daarom zoveel mogelijk dat altijd zo gezellige contact met haar klanten as mentioned in this paper.
Abstract: Mevrouw De Roos, 32 jaar, werkt achter de schermen in haar eigen restaurant. Ik ben haar huisarts. Zij komt op mijn spreekuur om voor de zoveelste keer een oplossing te vinden voor haar overgewicht. Zij is een kleine, maar omvangrijke vrouw: 1 meter 68 lang en 108 kilo. Zij geneert zich voor haar uiterlijk en mijdt daarom zoveel mogelijk dat altijd zo gezellige contact met haar klanten. Zij mist die babbeltjes enorm en voelt zich sociaal geisoleerd.