Development of a plain-language guide for discussing breast cancer genetic counseling and testing with patients with limited health literacy.

PURPOSE: Due to limited health literacy and resulting ineffective communication between healthcare professionals and patients, not all eligible patients are offered breast cancer genetic counseling and testing. We aimed to develop a plain-language guide to increase effective communication about genetic counseling and testing with breast cancer patients with limited health literacy. METHODS: Together with oncological healthcare professionals, we drafted a list of jargon words frequently used during (breast) cancer genetic counseling. In a focus group interview with breast cancer counselees with limited health literacy, who had received genetic counseling before, we reformulated these words in plain language. Low-literate individuals, who are not familiar with breast cancer care or genetic counseling, reflected on the draft of the guide. Completeness, acceptability, and perceived usability were tested in an online questionnaire among healthcare professionals. RESULTS: The result is a plain-language guide for genetic counseling and testing with 33 frequently used jargon words and a reformulation of these words in plain language. Acceptability and perceived usefulness of the guide among healthcare professionals (n = 58) were high. CONCLUSION: The plain-language guide provides opportunities to facilitate communication about genetic counseling and testing with patients with limited health literacy and could enhance opportunities for patients to make informed decisions to participate in genetic testing. As the intention from healthcare professionals to use the plain-language guide is high, implementation of the guide in a real-life setting seems promising.

Prior medication adherence of participants and non participants of a randomized controlled trial to improve patient adherence in cardiovascular risk management.

BACKGROUND: Poor medication adherence is a major factor in the secondary prevention of cardiovascular diseases (CVD) and contributes to increased morbidity, mortality, and costs. Interventions for improving medication adherence may have limited effects as a consequence of self selection of already highly adherent participants into clinical trials. METHODS: In this retrospective cohort study, existing levels of medication adherence were examined in self-decided participants and non-participants prior to inclusion in a randomized controlled study (RCT), evaluating the effect of an intervention to improve adherence. In addition, the non-participants were further divided into 'responders' and 'non responders'. All individuals had manifest cardiovascular disease and completed a questionnaire with baseline characteristics, the Beliefs about Medicines Questionnaire (BMQ) and the Modified Morisky Scale® (MMS®) as part of a regular screening program. A logistic regression was conducted to examine the relationship between study participation willingness, adherence level and the beliefs about medication. RESULTS: According to the MMS® the adherence level was comparable in all groups. In both (non)-participants groups, 36% was classified as high adherent; 46% participants versus 44% non-participants were classified as medium adherent and 19% of the participants versus 20% of the non-participants were low adherent (p = 0.91. The necessity concern differential (NCD) from the BMQ was 3.8 for participants and 3.4 for non-participants (p = 0.32). CONCLUSION: This study shows that adherence to medication and beliefs about medication do not differ between participants and non-participants before consenting to participate in an RCT. The study design seems not to have led to greater adherence in the study group.

Development of a standard set of outcome measures for non-specific low back pain in Dutch primary care physiotherapy practices: a Delphi study.

PURPOSE: To develop a clinical standard set of outcome measures that are accepted for relevance and feasibility by stakeholders and useful for (a) interaction between patient and the professional, e.g. shared decision-making in goal-setting, monitoring and feedback based on outcomes, (b) internal quality improvement, and (c) external transparency in patients with non-specific low back pain (NSLBP) in primary care physical therapy. METHODS: We used a consensus-driven modified RAND-UCLA Delphi method in seven steps with panellists (patients, representatives of patient and physiotherapy associations, researchers, policy makers, health insurers): (1) literature search, (2) first online survey, (3) patient interviews, (4) an experts meeting, (5) a consensus meeting, (6) second online survey, and (7) final approval of an advisory board. Steps 1-4 resulted in potential outcome measures. In the consensus meeting after discussion panellists voted for inclusion per measure. In the second online survey the final standard set was rated on relevance and feasibility on a 9-point Likert scale; when the median score was ≥ 7, the standard set was accepted and finally approved. RESULTS: Thirteen draft outcome measures were rated and discussed, and finally, six outcome measures were accepted. The standard set includes the Quebec Back Pain Disability Scale, Oswestry Disability Index, Patient-Specific Functional Scale, Numeric Pain Rating Scale, Global Perceived Effect (GPE-DV), and the STarT Back Screening Tool (SBT). CONCLUSION: This study presents a standard set of outcome measures for patients with NSLBP in primary care physiotherapy accepted for relevance and feasibility by stakeholders. The standard set is currently used in daily practice and tested on validity and reliability in a pilot study. These slides can be retrieved under Electronic Supplementary Material.

Active participation of patients with type 2 diabetes in consultations with their primary care practice nurses - what helps and what hinders: a qualitative study.

BACKGROUND: Patients with type 2 diabetes mellitus (T2DM) receiving primary care regularly visit their practice nurses (PNs). By actively participating during medical consultations, patients can better manage their disease, improving clinical outcomes and their quality of life. However, many patients with T2DM do not actively participate during medical consultations. To understand the factors affecting engagement of patients with T2DM, this study aimed to identify factors that help or hinder them from actively participating in consultations with their primary care PNs. METHODS: Two semi-structured focus groups and 12 semi-structured individual interviews were conducted with patients with T2DM (n = 20) who were undergoing treatment by primary care PNs. All interviews were transcribed verbatim and analyzed using a two-step approach derived from the context-mapping framework. RESULTS: Four factors were found to help encourage patients to actively participate in their consultation: developing trusting relationships with their PNs, having enough time in the appointment, deliberately preparing for consultations, and allowing for the presence of a spouse. Conversely, four factors were found to hinder patients from participating during consultations: lacking the need or motivation to participate, readjusting to a new PN, forgetting to ask questions, and ineffectively expressing their thoughts. CONCLUSION: Patients lacked the skills necessary to adequately prepare for a consultation and achieve an active role. In addition, patients' keen involvement appeared to benefit from a trusting relationship with their PNs. When active participation is impeded by barriers such as a lack of patient's skills, facilitators should be introduced at an early stage. TRIAL REGISTRATION: Current Controlled Trials NTR4693 (July 16, 2014).

Non-indicated vitamin B12- and D-testing among Dutch hospital clinicians: a cross-sectional analysis in data registries.

OBJECTIVES: To assess the extent of non-indicated vitamin B12- and D-testing among Dutch clinicians and its variation among hospitals. DESIGN: Cross-sectional study using registration data from 2015 to 2019. PARTICIPANTS: Patients aged between 18 and 70 years who received a vitamin B12- or D-test. PRIMARY AND SECONDARY OUTCOME MEASURES: The proportion of non-indicated vitamin B12- and D-testing among Dutch clinicians and its variation between hospitals (n=68) over 2015-2019. RESULTS: Between 2015 and 2019, at least 79.0% of all vitamin B12-tests and 82.0% of vitamin D-tests lacked a clear indication. The number of vitamin B12-tests increased by 2.0% over the examined period, while the number of D-tests increased by 12.2%. The proportion of the unexplained variation in non-indicated vitamin B12- and D-tests that can be ascribed to differences between hospitals remained low. Intraclass correlation coefficients ranged between 0.072 and 0.085 and 0.081 and 0.096 for non-indicated vitamin B12- and D-tests, respectively. The included casemix variables patient age, gender, socioeconomic status and hospital size only accounted for a small part of the unexplained variation in non-indicated testing. Additionally, a significant correlation was observed in non-indicated vitamin B12- and D-testing among the included hospitals. CONCLUSION: Hospital clinicians order vitamin B12- and D-tests without a clear indication on a large scale. Only a small proportion of the unexplained variation could be attributed to differences between hospitals.

Prenatal counseling for congenital anomaly tests: parental preferences and perceptions of midwife performance.

OBJECTIVE: Evidence-based instruments to evaluate the preferences and experiences of future parents regarding prenatal counseling for congenital anomaly tests are currently lacking. We developed the quality of care through clients' eyes prenatal questionnaire (QUOTE(prenatal) ), a client-centered instrument, and assessed its components. Furthermore, the QUOTE(prenatal) was used to provide insight into (1) clients' previsit preferences and (2) clients' postvisit experience, that is, perceived care provider performance regarding the counseling they received. METHOD: In the questionnaire survey, a principal component analysis was used to gain insight into the underlying components of the questionnaire. Regression analysis was performed to examine differences between groups. RESULTS: In 17 Dutch midwifery practices, 941 pregnant women and their partners (response rate 79%) completed the 59-item QUOTE(prenatal) previsit and postvisit, measuring preferences and perceived performances, respectively. A principal component analysis revealed three counseling components: client-midwife relation, health education and decision-making support. Reponses showed that, previsit, most clients consider the client-midwife relationship and health education to be (very) important. One third of the clients consider decision-making support to be (very) important. Nulliparae had higher preferences for health education and decision-making support than multiparae. CONCLUSION: Clients perceive that their midwives perform well in building the client-midwife relationship and in giving health education. Improvement is needed in decision-making support.

Barriers and facilitators to reduce low-value care: a qualitative evidence synthesis.

OBJECTIVE: To assess barriers and facilitators to de-implementation. DESIGN: A qualitative evidence synthesis with a framework analysis. DATA SOURCES: Medline, Embase, Cochrane Library and Rx for Change databases until September 2018 were searched. ELIGIBILITY CRITERIA: We included studies that primarily focused on identifying factors influencing de-implementation or the continuation of low-value care, and studies describing influencing factors related to the effect of a de-implementation strategy. DATA EXTRACTION AND SYNTHESIS: The factors were classified on five levels: individual provider, individual patient, social context, organisational context, economic/political context. RESULTS: We identified 333 factors in 81 articles. Factors related to the individual provider (n=131; 74% barriers, 17% facilitators, 9% both barrier/facilitator) were associated with their attitude (n=72; 55%), knowledge/skills (n=43; 33%), behaviour (n=11; 8%) and provider characteristics (n=5; 4%). Individual patient factors (n=58; 72% barriers, 9% facilitators, 19% both barrier/facilitator) were mainly related to knowledge (n=33; 56%) and attitude (n=13; 22%). Factors related to the social context (n=46; 41% barriers, 48% facilitators, 11% both barrier/facilitator) included mainly professional teams (n=23; 50%) and professional development (n=12; 26%). Frequent factors in the organisational context (n=67; 67% barriers, 25% facilitators, 8% both barrier/facilitator) were available resources (n=28; 41%) and organisational structures and work routines (n=24; 36%). Under the category of economic and political context (n=31; 71% barriers, 13% facilitators, 16% both barrier/facilitator), financial incentives were most common (n=27; 87%). CONCLUSIONS: This study provides in-depth insight into the factors within the different (sub)categories that are important in reducing low-value care. This can be used to identify barriers and facilitators in low-value care practices or to stimulate development of strategies that need further refinement. We conclude that multifaceted de-implementation strategies are often necessary for effective reduction of low-value care. Situation-specific knowledge of impeding or facilitating factors across all levels is important for designing tailored de-implementation strategies.

qLessons learned from patients with access to an online self-management enhancing program for RA patients: Qualitative analysis of interviews alongside a randomized clinical trial.

OBJECTIVE: This study aims to explain the earlier findings of a Randomized Controlled Trial (RCT), which showed that rheumatoid arthritis (RA) patients did not benefit from an online self-management program. Moreover, less patients than expected used the program. METHODS: As part of an explorative RCT, patients were interviewed to explore their (non) usage of the program. Purposive sampling (n = 21) was used to select patients from four groups of patients (n = 49): 1) non-users; 2) low users; 3) high users basic; 4) high users plus. RESULTS: The program supported only a small group of patients because: 1) not all patients were motivated to use the program, 2) patients had no clear expectation or had differing expectations of the program, 3) there was a mismatch between individual patients' support needs and the needs included in the program, 4) reminders were only sent to fill in the diaries for pain and fatigue, not to use the program modules. CONCLUSION: This study offers insights in the (non-) usage of online programs and how usage could be increased in practice. PRACTICAL IMPLICATIONS: Health professionals should be involved in the implementation of this online programs and should inform patients what the program could bring them.

Implicit and explicit attitudes towards disease-modifying antirheumatic drugs as possible target for improving medication adherence.

OBJECTIVE: This study aims to explore the contribution of implicit attitudes and associations towards conventional disease-modifying antirheumatic drugs (cDMARDs), alongside explicit measures, on medication-taking behaviour and clinical outcomes in adult patients with rheumatoid arthritis (RA). METHODS: In this observational study, implicit attitudes (positive-negative) and health-related associations (health-sickness) were measured with Single Category Implicit Association Tests, whereas explicit outcomes were measured with a bipolar evaluative adjective scale and the Beliefs about Medicines Questionnaire Specific. The primary outcome of this study was medication-taking behaviour subjectively measured by self-report (i.e. validated Compliance Questionnaire on Rheumatology) and objectively measured with electronic drug monitors over a 3 month period. Spearman rank correlations were used to describe correlations between implicit and explicit outcomes. Nested linear regression models were used to assess the additional value of implicit measures over explicit measures and patient-, clinical-, and treatment-related characteristics. RESULTS: Of the 1659 initially-invited patients, 254 patients with RA agreed to participate in this study. Implicit attitudes correlated significantly with necessity-concerns differential (NCD) scores (ρ = 0.13, P = 0.05) and disease activity scores (ρ = -0.17, P = 0.04), whereas implicit health-related associations correlated significantly with mean scores for explicitly reported health-related associations (ρ = 0.18, P = 0.004). Significant differences in age, number of DMARDs, biologic DMARD use, NCD-scores, and self-reported correct dosing were found between the four attitudinal profiles. Nested linear regression models revealed no additional value of implicit measures in explaining self-reported medication-taking behaviour and clinical outcomes, over and above all other variables. CONCLUSION: Implicit attitudes and associations had no additional value in explaining medication-taking behaviour and clinical outcomes over and above often used explicitly measured characteristics, attitudes and outcomes in the studied population. Only age and NCD scores contributed significantly when the dependent variable was correct dosing measured with self-report.

Practice nurses mental health provide space to patients to discuss unpleasant emotions.

UNLABELLED: WHAT IS KNOWN ON THE SUBJECT?: A core skill of practice nurses' mental health is to recognize and explore patients' unpleasant emotions. Patients rarely express their unpleasant emotions directly and spontaneously, but instead give indirect signs that something is worrying them. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Patients with mild psychosocial and psychological problems provide signs of worrying or express a clear unpleasant emotion in 94% of consultations with a practice nurse mental health. Nurses' responses to patients' signs of worrying or clear unpleasant emotions were mostly characterized by providing space for patients to talk about these emotions, by using minimal responses. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Practice nurses' mental health have passive listening skills, and to a lesser extent, use active listening techniques. Accurate emotion detection and the ability to pick out emotional signs during consultations must also be considered as an important skill for health providers to improve patient-centred communication. AIM: Patients with physical problems are known to express their emotional concerns in an implicit way only. Whether the same counts for patients presenting mental health problems in primary care is unknown. This study aims to examine how patients with mild psychosocial and psychological complaints express their concerns during consultations with the practice nurse mental health and how practice nurses respond to these expressions. METHOD: Fifteen practice nurses mental health working in Dutch general practices participated in the study. Their consultations with 116 patients with mild psychosocial or psychological complaints were video recorded. patients' explicitly expressed emotional concerns and more implicit expressions of underlying emotional problems (cues) as well as nurses' responses to these expressions were rated using the Verona Coding Definition of Emotional Sequences. RESULTS: Almost all consultations contained at least one cue or concern (94%). Nurses' responses were mostly characterized by providing space for patients to talk about their cue or concern in a non-explicit way (62%), by using minimal responses (42%). DISCUSSION: Practice nurses mental health have passive listening skills, and to a lesser extent, use active listening techniques. However, there are no strict rules which way of responding is the best and patients value responses differently.

[The placebo effects of good communication]. / De placebo-effecten van goede communicatie.

- Good communication is important for patients and can elicit placebo effects: true psychobiological effects not attributable to the medical-technical intervention.- It is, however, often unclear which communication behaviours influence specific patient outcomes.- In this article we present insights into the potential effect of specific communication, via specific mechanisms, on specific patient outcomes, including patients' perception of pain.- A recent systematic review and additional literature demonstrate that (a) manipulating patients' expectations, (b) demonstrating empathy, and (c) providing procedural information, might influence patient outcomes.- These placebo effects probably occur via (a) neurobiological responses comparable to the effects of pain medication, (b) reduction of anxiety and stress, and

The impact of watching educational video clips on analogue patients' physiological arousal and information recall.

OBJECTIVE: Investigating the influence of watching three educational patient-provider interactions on analogue patients' emotional arousal and information recall. METHODS: In 75 analogue patients the emotional arousal was measured with physiological responses (electrodermal activity and heart rate) and self-reported arousal. RESULTS: A moderate increased level of physiological arousal was measured but not too much to inflict emotional distress. Recall of information was within the pursued range. CONCLUSION: Hence, physiological arousal is not expected to hinder the goals we pursue with our online intervention. PRACTICE IMPLICATIONS: Still, developers and researchers should remain attentive to the self-reported (conscious) and hidden (subconscious) emotions evoked by the content of educational video clips presented in self-help interventions. A moderate increased level of arousal is preferred to increase the learning capacity. However, too much arousal may decrease the learning capacity and may cause distress, which should obviously be avoided for ethical reasons.

The effect of patient-practitioner communication on pain: a systematic review.

BACKGROUND AND OBJECTIVE: Communication between patients and health care practitioners is expected to benefit health outcomes. The objective of this review was to assess the effects of experimentally varied communication on clinical patients' pain. DATABASES AND DATA TREATMENT: We searched in July 2012, 11 databases supplemented with forward and backward searches for (quasi-) randomized controlled trials in which face-to-face communication was manipulated. We updated in June 2015 using the four most relevant databases (CINAHL, Cochrane Central, Psychinfo, PubMed). RESULTS: Fifty-one studies covering 5079 patients were included. The interventions were separated into three categories: cognitive care, emotional care, procedural preparation. In all but five studies the outcome concerned acute pain. We found that, in general, communication has a small effect on (acute) pain. The 19 cognitive care studies showed that a positive suggestion may reduce pain, whereas a negative suggestion may increase pain, but effects are small. The 14 emotional care studies showed no evidence of a direct effect on pain, although four studies showed a tendency for emotional care lowering patients' pain. Some of the 23 procedural preparation interventions showed a weak to moderate effect on lowering pain. CONCLUSIONS: Different types of communication have a significant but small effect on (acute) pain. Positive suggestions and informational preparation seem to lower patients' pain. Communication interventions show a large variety in quality, complexity and methodological rigour; they often used multiple components and it remains unclear what the effective elements of communication are. Future research is warranted to identify the effective components.

Quality of weight-loss counseling by Dutch practice nurses in primary care: an observational study.

BACKGROUND/OBJECTIVE: To assess the quality of weight-loss counseling provided by Dutch primary care practice nurses (PNs) to overweight and obese patients including both PNs' compliance with the Five A's Model for behavioral counseling in primary care, and the use of different communication styles. In addition, relationships between PN/patient characteristics (including Five A's) and communication styles will be examined. SUBJECTS/METHODS: In this observational study, 100 videotaped real-life consultations, collected in 2010/2011, were viewed using an observational checklist. Selection of consultations was based on PNs' registration of patient's complaint. The quality of weight-loss counseling was assessed by the Five A's Model (sequence of evidence-based practice behaviors that are effective for helping patients to change health behaviors) and by PNs' communication styles. Moreover, several PN and patient characteristics were registered. Descriptive statistics and logistic regression analysis were conducted with significance set at P<0.05. RESULTS: PNs most frequently arranged follow-up, assessed the risk and current behavior and advised. However, they rarely assisted in addressing barriers and securing support. For weight or physical activity, most PNs used a motivational communication style. In discussions of nutrition, they mostly used an informational communication style. Moreover, PNs used a combination of communication styles. PN characteristics, including their behavior concerning the Five A's, were stronger related to communication styles than patient characteristics. CONCLUSIONS: PNs reasonably complied with the Five A's Model. The quality of PNs' weight-loss counseling might be increased by routinely providing assistance in addressing barriers and securing support, and routinely reaching agreement with collaboratively set goals.

Examining the content of weight, nutrition and physical activity advices provided by Dutch practice nurses in primary care: analysis of videotaped consultations.

BACKGROUND/OBJECTIVE: To examine the content of Dutch practice nurses' (PNs') advices about weight, nutrition and physical activity to overweight and obese patients. SUBJECTS/METHODS: A 100 videotaped real-life PN consultations (The Netherlands, 2010/2011) with overweight or obese patients were selected. An observational checklist was developed to assess frequency and content. Personalization of advices was scored, as also the guidelines on which PNs based their advices. Content analysis was used to identify different categories of advices. RESULTS: About one quarter of advices concerned weight, over two-thirds nutrition and one-third physical activity. Lose weight, eat less fat and be more physically active in general were the main categories for each type of advice. Despite high clarity of advices, lower scores were found for specificity and personalization. Very few nutrition advices were provided in combination with physical activity advices. CONCLUSIONS: Weight advices often related to the patient's complaint. PNs seldom set a concrete weight goal. Although benefits of physical activity were discussed, often no practical advices were provided about how to achieve this. Integrated lifestyle advice was not common: advices about nutrition and physical activity were fragmented throughout the consultation. Obesity prevention needs more emphasis in PNs' educational programs.

Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral.

Both physician and patient play a role in the referral process for cancer genetic counseling. Access to such counseling is not optimal because some eligible patients are not being reached by current referral practice. We aimed to identify factors associated with the initiator of referral. During a 7-month period, we recorded demographic characteristics like gender, personal and family history of cancer, ethnicity and eligibility for genetic testing for 406 consecutive counselees using a specially designed questionnaire. Counselees were seen in a university hospital or a community hospital (n = 7) in the Netherlands. We also recorded educational level of each counselee, clinical setting and who initiated referral. Descriptive statistics were used to describe the counselees' general characteristics. We analysed the association between counselee characteristics and the initiator of referral by logistic regression. The majority of counselees seemed to have initiated referral themselves but were indeed eligible for genetic testing. In comparison to the general population in the Netherlands, the counselees had a higher level of education, and there were fewer immigrants, although a higher level of education was not found to be a facilitating factor for referral. The clinical setting where a counselee was seen was associated with initiator of referral, although this relationship was not straightforward. There is a complex interaction between clinical setting and initiator of referral, which warrants further research to elucidate the factors involved in this relationship. Patients seen in cancer genetic counseling do not reflect the general population in terms of educational level or ethnicity.