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1.  Response and participation of underserved populations after a three-step invitation strategy for a cardiometabolic health check 
BMC Public Health  2015;15:854.
Ethnic minority and native Dutch groups with a low socioeconomic status (SES) are underrepresented in cardiometabolic health checks, despite being at higher risk. We investigated response and participation rates using three consecutive inexpensive-to-costly culturally adapted invitation steps for a health risk assessment (HRA) and further testing of high-risk individuals during prevention consultations (PC).
A total of 1690 non-Western immigrants and native Dutch with a low SES (35–70 years) from six GP practices were eligible for participation. We used a ‘funnelled’ invitation design comprising three increasingly cost-intensive steps: (1) all patients received a postal invitation; (2) postal non-responders were approached by telephone; (3) final non-responders were approached face-to-face by their GP. The effect of ethnicity, ethnic mix of GP practice, and patient characteristics (gender, age, SES) on response and participation were assessed by means of logistic regression analyses.
Overall response was 70 % (n = 1152), of whom 62 % (n = 712) participated in the HRA. This was primarily accomplished through the postal and telephone invitations. Participants from GP practices in the most deprived neighbourhoods had the lowest response and HRA participation rates. Of the HRA participants, 29 % (n = 207) were considered high-risk, of whom 59 % (n = 123) participated in the PC. PC participation was lowest among native Dutch with a low SES.
Underserved populations can be reached by a low-cost culturally adapted postal approach with a reminder and follow-up telephone calls. The added value of the more expensive face-to-face invitation was negligible. PC participation rates were acceptable. Efforts should be particularly targeted at practices in the most deprived areas.
Electronic supplementary material
The online version of this article (doi:10.1186/s12889-015-2139-x) contains supplementary material, which is available to authorized users.
PMCID: PMC4558779  PMID: 26335782
2.  Dutch Translation and Psychometric Testing of the 9-Item Shared Decision Making Questionnaire (SDM-Q-9) and Shared Decision Making Questionnaire-Physician Version (SDM-Q-Doc) in Primary and Secondary Care 
PLoS ONE  2015;10(7):e0132158.
The SDM-Q-9 and SDM-Q-Doc measure patient and physician perception of the extent of shared decision making (SDM) during a physician-patient consultation. So far, no self-report instrument for SDM was available in Dutch, and validation of the scales in other languages has been limited. The aim of this study was to translate both scales into Dutch and assess their psychometric characteristics.
Participants were patients and their treating physicians (general practitioners and medical specialists). Patients (N = 182) rated their consultation using the SDM-Q-9, 43 physicians rated their consultations using the SDM-Q-Doc (N = 201). Acceptability, reliability (internal consistency), and the factorial structure of the instruments were determined. For convergent validity the CPSpost was used.
Reliabilities of both scales were high (alpha SDM-Q-9 0.88; SDM-Q-Doc 0.87). The SDM-Q-9 and SDM-Q-Doc total scores correlated as expected with the CPSpost (SDM-Q-9: r = 0.29; SDM-Q-Doc: r = 0.48) and were significantly different between the CPSpost categories, with lowest mean scores when the physician made the decision alone. Principal Component Analyses showed a two-component model for each scale. A confirmatory factor analysis yielded a mediocre, but acceptable, one-factor model, if Item 1 was excluded; for both scales the best indices of fit were obtained for a one-factor solution, if both Items 1 and 9 were excluded.
The Dutch SDM-Q-9 and SDM-Q-Doc demonstrate good acceptance and reliability; they correlated as expected with the CPSpost and are suitable for use in Dutch primary and specialised care. Although the best model fit was found when excluding Items 1 and 9, we believe these items address important aspects of SDM. Therefore, also based on the coherence with theory and comparability with other studies, we suggest keeping all nine items of the scale. Further research on the SDM-concept in patients and physicians, in different clinical settings and different countries, is necessary to gain a better understanding of the SDM-construct and its measurement.
PMCID: PMC4494856  PMID: 26151946
3.  Breast cancer specialists' views on and use of risk prediction models in clinical practice: A mixed methods approach 
Risk prediction models (RPM) in breast cancer quantify survival benefit from adjuvant systemic treatment. These models [e.g. Adjuvant! Online (AO)] are increasingly used during consultations, despite their not being designed for such use. As still little is known about oncologists' views on and use of RPM to communicate prognosis to patients, we investigated if, why, and how they use RPM.
We disseminated an online questionnaire that was based on the literature and individual and group interviews with oncologists.
Fifty-one oncologists (partially) completed the questionnaire. AO is the best known (95%) and most frequently used RPM (96%). It is used to help oncologists decide whether or not to recommend chemotherapy (> 85%), to inform (86%) and help patients decide about treatment (> 80%), or to persuade them to follow the proposed course of treatment (74%). Most oncologists (74%) believe that using AO helps patients understand their prognosis.
RPM have found a place in daily practice, especially AO. Oncologists think that using AO helps patients understand their prognosis, yet studies suggest that this is not always the case. Our findings highlight the importance of exploring whether patients understand the information that RPM provide.
PMCID: PMC4445013  PMID: 25307407
4.  Optimal Treatment Strategy in Rectal Cancer Surgery: Should We Be Cowboys or Chickens? 
Annals of Surgical Oncology  2015;22(11):3582-3589.
Background and Purpose
Surgeons and hospitals are increasingly accountable for their postoperative complication rates, which may lead to risk adverse treatment strategies in rectal cancer surgery. It is not known whether a risk adverse strategy leads to providing better care. In this study, the association between the strategy of hospitals regarding defunctioning stoma construction and postoperative outcomes in rectal cancer treatment was evaluated.
Population-based data of the Dutch Surgical Colorectal Audit, including 3,104 patients undergoing rectal cancer resection between January 2009 and July 2012 in 92 hospitals, were used. Hospital variation in (case-mix-adjusted) defunctioning stoma rates was calculated. Anastomotic leakage and 30-day mortality rates were compared in hospitals with a high and low tendency towards stoma construction.
Of all patients, 76 % received a defunctioning stoma; 9.6 % of all patients developed anastomotic leakage. Overall postoperative mortality rate was 1.8 %. The hospitals’ adjusted proportion of defunctioning stomas varied from 0 to 100 %, and there was no significant correlation between the hospitals’ adjusted stoma and anastomotic leakage rate. Severe anastomotic leakage was similar (7.0 vs. 7.1 %; p = 0.95) in hospitals with the lowest and highest stoma rates. Mild leakage and postoperative mortality rates were higher in hospitals with high stoma rates.
A high tendency towards stoma construction in rectal cancer surgery did not result in lower overall anastomotic leakage or mortality rates. It seems that the ability to select patients for stoma construction is the key towards preferable outcomes, not a risk adverse strategy.
PMCID: PMC4565862  PMID: 25691277
5.  Values clarification in a decision aid about fertility preservation: does it add to information provision? 
We aimed to evaluate the effect of a decision aid (DA) with information only compared to a DA with values clarification exercise (VCE), and to study the role of personality and information seeking style in DA-use, decisional conflict (DC) and knowledge.
Two scenario-based experiments were conducted with two different groups of healthy female participants. Dependent measures were: DC, knowledge, and DA-use (time spent, pages viewed, VCE used). Respondents were randomized between a DA with information only (VCE-) and a DA with information plus a VCE(VCE+) (experiment 1), or between information only (VCE-), information plus VCE without referral to VCE(VCE+), and information plus a VCE with specific referral to the VCE, requesting participants to use the VCE(VCE++) (experiment 2). In experiment 2 we additionally measured personality (neuroticism/conscientiousness) and information seeking style (monitoring/blunting).
Experiment 1. There were no differences in DC, knowledge or DA-use between VCE- (n=70) and VCE+ (n=70). Both DAs lead to a mean gain in knowledge from 39% at baseline to 73% after viewing the DA. Within VCE+, VCE-users (n=32, 46%) reported less DC compared to non-users. Since there was no difference in DC between VCE- and VCE+, this is likely an effect of VCE-use in a self-selected group, and not of the VCE per se. Experiment 2. There were no differences in DC or knowledge between VCE- (n=65), VCE+ (n=66), VCE++ (n=66). In all groups, knowledge increased on average from 42% at baseline to 72% after viewing the DA. Blunters viewed fewer DA-pages (R=0.38, p<.001). More neurotic women were less certain (R=0.18, p<.01) and felt less supported in decision making (R=0.15, p<.05); conscientious women felt more certain (R=-0.15, p<.05) and had more knowledge after viewing the DA (R=0.15, p<.05).
Both DAs lead to increased knowledge in healthy populations making hypothetical decisions, and use of the VCE did not improve knowledge or DC. Personality characteristics were associated to some extent with DA-use, information seeking styles with aspects of DC. More research is needed to make clear recommendations regarding the need for tailoring of information provision to personality characteristics, and to assess the effect of VCE use in actual patients.
PMCID: PMC4236594  PMID: 25106453
Values clarification method; Decision aid; Decisional conflict; Knowledge; Personality; Information seeking style; Experiment
6.  A comprehensive representation of the birth-experience: identification and prioritization of birth-specific domains based on a mixed-method design 
In obstetrics, effectiveness and cost-effectiveness studies often present several specific outcomes with likely contradicting results and may not reflect what is important for women. A birth-specific outcome measure that combines the core domains into one utility score would solve this problem. The aim of this study was to investigate which domains are most relevant for women’s overall experience of labor and birth and should be included in such a measure.
A sequential mixed-method design with three steps was applied. First, the domains were identified by literature review and online focus groups consisting of pregnant women, women who recently gave birth, and their partners. Second, in a prioritizing task, women who recently gave birth and professionals (midwives, gynecologists, and researchers) selected and ranked their top seven domains. Third, the domains that were most frequently selected and had the highest ranking scores determined the basis for a consensus discussion with experts, whereby the definitive list of domains was formed.
In the first step, 34 birth-specific domains were identified, which cover domains regarding the caregivers, intrapersonal aspects of the mother, partner support, and contextual and medical aspects of birth. Based on the prioritizing task results (step 2) of 96 women and 89 professionals, this list was reduced to 14 most relevant domains. In a consensus discussion, the final seven domains were selected by combining several of the 14 remaining domains and giving priority to the domains indicated to be relevant by mothers. The seven definite domains were: 1) availability of competent health professionals; 2) health professionals’ support; 3) provision of information; 4) health professionals’ response to needs and requests; 5) feelings of safety; 6) worries about the child’s health; and 7) experienced duration until the first contact with the child.
The experienced availability and quality of received care, concerns about safety and the baby’s health, and first contact with the baby are regarded as key aspects for a mother’s overall birth experience. Therefore, these domains are considered to be the most crucial for inclusion in a birth-specific outcome measure.
PMCID: PMC4021407  PMID: 24758274
Labor and birth experience; Utility measure; Patient-reported outcomes; Questionnaire; Cost-effectiveness
7.  Antidepressants in primary care: patients’ experiences, perceptions, self-efficacy beliefs, and nonadherence 
Patient adherence to antidepressants is poor. However, this is rather unsurprising, given the equivocal efficacy, side effects, and practical problems of antidepressants. The aim of this study was to examine a wide array of patient experiences and perceptions regarding the efficacy, side effects, and practical problems of antidepressants, as well as their associations with nonadherence, and whether patients’ perceived self-efficacy moderated these associations.
Patients and methods
Experiences and perceptions of 225 patients, recruited through community pharmacies, were efficiently assessed with the Tailored Medicine Inventory. Nonadherence was assessed through self-report and pharmacy refill data.
Many patients were not convinced of the efficacy, thought the efficacy to be limited or did not believe antidepressants to prevent relapse, were worried about or had experienced one or more side effects, and/or had experienced one or more practical problems regarding information, intake, and packaging. Being convinced of efficacy was associated with lower intentional nonadherence (odds ratio [OR] 0.9, 95% confidence interval [CI] 0.8–0.96). A higher number of practical problems experienced was associated with increased unintentional nonadherence (OR 1.3, 95% CI 1.1–1.7). Higher perceived self-efficacy regarding taking antidepressants was associated with lower unintentional nonadherence (OR 0.7, 95% CI 0.5–0.9). Perceived self-efficacy did not moderate associations of patient experiences and perceptions with nonadherence.
Assessing a wide array of patients’ experiences and perceptions regarding the efficacy, side effects, and practical problems of antidepressants contributes to better understanding of nonadherence to antidepressants. Guiding physician–patient conversations by patients’ experiences and perceptions may reduce both unintentional and intentional nonadherence. Also, it may give rise to considerations of prudent discontinuation, eg, when patients are not convinced of the efficacy.
PMCID: PMC3926453  PMID: 24550668
antidepressants; efficacy; side effects; practical problems; patients’ experiences and perceptions; perceived self-efficacy; nonadherence
8.  Anticipated adaptation or scale recalibration? 
The aim of our study was to investigate anticipated adaptation among patients in the subacute phase of Spinal Cord Injury (SCI).
We used an observational longitudinal design. Patients with SCI (N = 44) rated their actual, previous and expected future Quality of Life (QoL) at three time points: within two weeks of admission to the rehabilitation center (RC), a few weeks before discharge from the RC, and at least three months after discharge. We compared the expected future rating at the second time point with the actual ratings at the third time point, using student’s t-tests. To gain insight into scale recalibration we also compared actual and previous ratings.
At the group level, patients overpredicted their improvement on the VAS. Actual health at T3(M = 0.65, sd =0.20)) was significantly lower than the predicted health at T1 of T3 (M = 0.76, sd = 0.1; t(43) = 3.24, p < 0.01), and at T2 of T3(M = 0.75,sd = 0.13; t(43) = 3.44, p < 0.001). Similarly the recalled health at T3 of T2 (M = 0.59, sd = 0.18) was significantly lower than the actual health at T2 (M = 0.67, sd = 0.15; t(43) = 3.26, p <0.01). Patients rated their future and past health inaccurately compared to their actual ratings on the VAS. In contrast, on the TTO patients gave accurate estimates of their future and previous health, and they also accurately valued their previous health. Looking at individual ratings, the number of respondents with accurate estimates of their future and previous health were similar between the VAS and TTO. However, the Bland-Altman plots show that the deviation of the accuracy is larger for the TTO then the VAS. That is the accuracy of 95% of the respondents was lower in the TTO then in the VAS.
Patients at the onset of a disability were able to anticipate adaptation. Valuations given on the VAS seem to be biased by scale recalibration.
PMCID: PMC4016565  PMID: 24139246
Scale recalibration; Adaptation; Time tradeoff; Visual analogue scale; Response shift and spinal cord injury; Health state utility
9.  Barriers and facilitators to implement shared decision making in multidisciplinary sciatica care: a qualitative study 
The Dutch multidisciplinary sciatica guideline recommends that the team of professionals involved in sciatica care and the patient together decide on surgical or prolonged conservative treatment (shared decision making [SDM]). Despite this recommendation, SDM is not yet integrated in sciatica care. Existing literature concerning barriers and facilitators to SDM implementation mainly focuses on one discipline only, whereas multidisciplinary care may involve other barriers and facilitators, or make these more complex for both professionals and patients. Therefore, this qualitative study aims to identify barriers and facilitators perceived by patients and professionals for SDM implementation in multidisciplinary sciatica care.
We conducted 40 semi-structured interviews with professionals involved in sciatica care (general practitioners, physical therapists, neurologists, neurosurgeons, and orthopedic surgeons) and three focus groups among patients (six to eight per group). The interviews and focus groups were audiotaped and transcribed in full. Reported barriers and facilitators were classified according to the framework of Grol and Wensing. The software package Atlas.ti 7.0 was used for analysis.
Professionals reported 53 barriers and 5 facilitators, and patients 35 barriers and 18 facilitators for SDM in sciatica care. Professionals perceived most barriers at the level of the organizational context, and facilitators at the level of the individual professional. Patients reported most barriers and facilitators at the level of the individual professional. Several barriers and facilitators correspond with barriers and facilitators found in the literature (e.g., lack of time, motivation) but also new barriers and facilitators were identified. Many of these new barriers mentioned by both professionals and patients were related to the multidisciplinary setting, such as lack of visibility, lack of trust in expertise of other disciplines, and lack of communication between disciplines.
This study identified barriers and facilitators for SDM in the multidisciplinary sciatica setting, by both professionals and patients. It is clear that more barriers than facilitators are perceived for implementation of SDM in sciatica care. Newly identified barriers and facilitators are related to the multidisciplinary care setting. Therefore, an effective implementation strategy of SDM in a multidisciplinary setting such as in sciatica care should focus on these barriers and facilitators.
PMCID: PMC3765956  PMID: 23968140
Sciatica; Lumbar radicular syndrome; Implementation strategy; Shared decision making; Barriers and facilitators; Multidisciplinary; Patients; Professionals; Providers
10.  Integrating evidence on patient preferences in healthcare policy decisions: protocol of the patient-VIP study 
Despite a strong movement towards active patient involvement in healthcare policy decisions, systematic and explicit consideration of evidence of this research on patient preferences seems limited. Furthermore, little is known about the opinions of several stakeholders towards consideration of research evidence on patient preferences in healthcare policy decisions. This paper describes the protocol for an explorative study on the integration of research on patient preferences in healthcare policy decisions. The study questions: to what extent research evidence on patient preferences is considered in current procedures for healthcare policy decisions; opinions of stakeholders regarding the integration of this type of evidence in healthcare policy decisions; and what could be a decision framework for the integration of such research evidence in healthcare policy decisions.
The study is divided in three sub-studies, predominantly using qualitative methods. The first sub-study is a scoping review in five European countries to investigate whether and how results of research on patient preferences are considered in current procedures for coverage decisions and clinical practice guideline development. The second sub-study is a qualitative study to explore the opinions of stakeholders with regard to the possibilities for integrating evidence on patient preferences in the process of healthcare decision-making in the Netherlands. The third sub-study is the development of a decision framework for research on patient preferences. The framework will consist of: a process description regarding the place of evidence on patient preferences in the decision-making process; and a taxonomy describing different terminologies and conceptualisations of ‘preferences’ and an overview of existing methodologies for investigating preferences. The concept framework will be presented to and discussed with experts.
This study will create awareness regarding the existence and potential value of research evidence on patient preferences for healthcare policy decision-making and provides insight in the methods for investigating patient preferences and the barriers and facilitators for integration of such research in healthcare policy decisions. Results of the study will be useful for researchers, clinical practice guideline developers, healthcare policy makers, and patient representatives.
PMCID: PMC3686695  PMID: 23758977
Patient preference; Coverage decisions; Clinical practice guidelines; Decision framework; Taxonomy
11.  Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes 
BMC Nephrology  2012;13:103.
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.
PMCID: PMC3493312  PMID: 22958636
Decision making; Donor-recipient relationship; Expectations; Kidney transplantation
12.  Designing an implementation strategy to improve interprofessional shared decision making in sciatica: study protocol of the DISC study 
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.
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.
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.
PMCID: PMC3465186  PMID: 22704251
Sciatica; Lumbar radicular syndrome; Implementation strategy; Shared decision making; Barriers and facilitators; Decision aid
13.  Societal preferences for standard health insurance coverage in the Netherlands: a cross-sectional study 
BMJ Open  2012;2(2):e001021.
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.
Article summary
Article focus
How do people value different attributes relative to other attributes in the context of healthcare resource allocation decisions?
How does the validity of the best–worst scaling method compare with the willingness pay method?
PMCID: PMC3323810  PMID: 22492390
14.  Effect of adaptive abilities on utilities, direct or mediated by mental health? 
In cost-utility analyses gain in health can be measured using health state utilities. Health state utilities can be elicited from members of the public or from patients. Utilities given by patients tend to be higher than utilities given by members of the public. This difference is often suggested to be explained by adaptation, but this has not yet been investigated in patients. Here, we investigate if, besides health related quality of life (HRQL), persons' ability to adapt can explain health state utilities. Both the direct effect of persons' adaptive abilities on health state utilities and the indirect effect, where HRQL mediates the effect of ability to adapt, are examined.
In total 125 patients with Rheumatoid Arthritis were interviewed. Participants gave valuations of their own health on a visual analogue scale (VAS) and time trade-off (TTO). To estimate persons' ability to adapt, patients filled in questionnaires measuring Self-esteem, Mastery, and Optimism. Finally they completed the SF-36 measuring HRQL. Regression analyses were used to investigate the direct and mediated effect of ability to adapt on health state utilities.
Persons' ability to adapt did not add considerably to the explanation of health state utilities above HRQL. In the TTO no additional variance was explained by adaptive abilities (Δ R2 = .00, β = .02), in the VAS a minor proportion of the variance was explained by adaptive abilities (Δ R2 = .05, β = .33). The effect of adaptation on health state utilities seems to be mediated by the mental health domain of quality of life.
Patients with stronger adaptive abilities, based on their optimism, mastery and self-esteem, may more easily enhance their mental health after being diagnosed with a chronic illness, which leads to higher health state utilities.
PMCID: PMC2993679  PMID: 21073693
15.  A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives 
Familial Cancer  2010;10(1):87-96.
Objective of this paper is to study how DNA-test result information was communicated and perceived within families. A retrospective descriptive study in 13 probands with a BRCA1/2 unclassified variant, 7 with a pathogenic mutation, 5 with an uninformative result, and in 44, 14, and 12 of their 1st and 2nd degree relatives respectively. We examined differences and correlations between: (a) information actually communicated (b) probands’ perception, (c) relatives’ perception. The perception consisted of recollections and interpretations of both their own and their relatives’ cancer-risks, and heredity-likelihood (i.e. likelihood that cancer is heritable in the family). Differences and low correlations suggested few similarities between the actually communicated information, the probands’ and the relatives’ perception. More specifically, probands recalled the communicated information differently compared with the actually communicated information (R = .40), and reinterpreted this information differently (R = .30). The relatives’ perception was best correlated with the proband’s interpretation (R = .08), but this perception differed significantly from their proband’s perception. Finally, relatives reinterpreted the information they received from their proband differently (R = .25), and this interpretation was only slightly related with the original message communicated by the genetic-counsellor (R = .15). Unclassified-variants were most frequently misinterpreted by probands and relatives, and had the largest differences between probands’ and relatives’ perceptions. Like in a children’s whisper-game, many errors occur in the transmission of DNA-test result information in families. More attention is required for how probands disseminate information to relatives. Genetic-counsellors may help by supporting the probands in communicating to relatives, e.g. by providing clear summary letters for relatives.
PMCID: PMC3036814  PMID: 20852944
BRCA1/2; Oncology; Psychology; Genetic-counselling; Familytherapy; Risk-perception
16.  How to integrate individual patient values and preferences in clinical practice guidelines? A research protocol 
Clinical practice guidelines are largely conceived as tools that will inform health professionals' decisions rather than foster patient involvement in decision making. The time now seems right to adapt clinical practice guidelines in such a way that both the professional's perspective as care provider and the patients' preferences and characteristics are being weighed equally in the decision-making process. We hypothesise that clinical practice guidelines can be adapted to facilitate the integration of individual patients' preferences in clinical decision making. This research protocol asks two questions: How should clinical practice guidelines be adapted to elicit patient preferences and to support shared decision making? What type of clinical decisions are perceived as most requiring consideration of individual patients' preferences rather than promoting a single best choice?
Stakeholders' opinions and ideas will be explored through an 18-month qualitative study. Data will be collected from in-depth individual interviews. A purposive sample of 20 to 25 key-informants will be selected among three groups of stakeholders: health professionals using guidelines (e.g., physicians, nurses); experts at the macro- and meso-level, including guideline and decision aids developers, policy makers, and researchers; and patient representatives. Ideas and recommendations expressed by stakeholders will be prioritized by nominal group technique in expert meetings.
One-for-all guidelines do not account for differences in patients' characteristics and for their preferences for medical interventions and health outcomes, suggesting a need for flexible guidelines that facilitate patient involvement in clinical decision making. The question is how this can be achieved. This study is not about patient participation in guideline development, a closely related and important issue that does not however substitute for, or guarantee individual patient involvement in clinical decisions. The study results will provide the needed background for recommendations about potential effective and feasible strategies to ensure greater responsiveness of clinical practice guidelines to individual patient's preferences in clinical decision-making.
PMCID: PMC2824684  PMID: 20205815

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