Professionals' preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study

Item does not contain fulltextPrenatal counseling practices at the limits of viability do vary, and constructing a counseling framework based on guidelines, professional and parental preferences, might achieve more homogeneity. We aimed to gain insight into professionals' preferences on three domains of counseling, particularly content, organization, and decision making and their influencing factors. A qualitative, nationwide in-depth exploration among Dutch perinatal professionals by semi-structured interviews in focus groups was performed. Regarding content of prenatal counseling, preparing parents on the short-term situation (delivery room care) and revealing their perspectives on "quality of life" were considered important. Parents should be informed on the kind of decision, on the difficulty of individual outcome predictions, on survival and mortality figures, short- and long-term morbidity, and the burden of hospitalization. For organization, the making of and compliance with agreements between professionals may promote joint counseling by neonatologists and obstetricians. Supportive materials were considered useful but only when up-to-date, in addition to the discussion and with opportunity for personalization. Regarding decision making, it is not always clear to parents that a prenatal decision needs to be made and they can participate, influencing factors could be, e.g., unclear language, directive counseling, overload of information, and an immediate delivery. There is limited familiarity with shared decision making although it is the preferred model. CONCLUSION: This study gained insight into preferred content, organization, and decision making of prenatal counseling at the limits of viability and their influencing factors from a professionals' perspective. What is Known: * Heterogeneity in prenatal counseling at the limits of viability exists * Differences between preferred counseling and actual practice also exists What is New: * Insight into preferred content, organization, and decision making of prenatal periviability counseling and its influencing factors from a professionals' perspective. Results should be taken into account when performing counseling. * Particularly the understanding of true shared decision making needs to be improved. Furthermore, implementation of shared decision making in daily practice needs more attention

Feedback preferences of patients, professionals and health insurers in integrated head and neck cancer care

Background: Audit and feedback on professional practice and health care outcomes are the most often used interventions to change behaviour of professionals and improve quality of health care. However, limited information is available regarding preferred feedback for patients, professionals and health insurers. Objective: Investigate the (differences in) preferences of receiving feedback between stakeholders, using the Dutch Head and Neck Audit as an example. Methods: A total of 37 patients, medical specialists, allied health professionals and health insurers were interviewed using semi-structured interviews. Questions focussed on: “Why,” “On what aspects” and “How” do you prefer to receive feedback on professional practice and health care outcomes?. Results: All stakeholders mentioned that feedback can improve health care by creating awareness, enabling self-reflection and reflection on peers or colleagues, and by benchmarking to others. Patients prefer feedback on the actual professional practice that matches the health care received, whereas medical specialists and health insurers are interested mainly in health care outcomes. All stakeholders largely prefer a bar graph. Patients prefer a pie chart for patient-reported outcomes and experiences, while Kaplan-Meier survival curves are preferred by medical specialists. Feedback should be simple with firstly an overview, and 1-4 times a year sent by e-mail. Finally, patients and health professionals are cautious with regard to transparency of audit data. Conclusions: This exploratory study shows how feedback preferences differ between stakeholders. Therefore, tailored reports are recommended. Using this information, effects of audit and feedback can be improved by adapting the feedback format and contents to the preferences of stakeholders

Perinatal practice in extreme premature delivery: variation in Dutch physicians' preferences despite guideline

Contains fulltext : 171156.pdf (publisher's version ) (Open Access)Decisions at the limits of viability about initiating care are challenging. We aimed to investigate physicians' preferences on treatment decisions, against the background of the 2010 Dutch guideline offering active care from 24(+0/7) weeks of gestational age (GA). Obstetricians' and neonatologists' opinions were compared. An online survey was conducted amongst all perinatal professionals (n = 205) of the 10 Dutch level III perinatal care centers. Response rate was 60 % (n = 122). Comfort care was mostly recommended below 24(+0/7) weeks and intensive care over 26(+0/7) weeks. The professional views varied most at 24 and 25 weeks, with intensive care recommended but comfort care at parental request optional being the median. There was a wide range in perceived lowest limits of GA for interventions as a caesarian section and a neonatologist present at birth. Obstetricians and neonatologists disagreed on the lowest limit providing chest compressions and administering epinephrine for resuscitation. The main factors restricting active treatment were presence of congenital disorders, "small for gestational age" fetus, and incomplete course of corticosteroids. CONCLUSION: There was a wide variety in individually preferred treatment decisions, especially when aspects were not covered in the Dutch guideline on perinatal practice in extreme prematurity. Furthermore, obstetricians and neonatologists did not always agree. WHAT IS KNOWN: * Cross-cultural differences exists in the preferred treatment at the limits of viability * In the Netherlands since 2010, intensive care can be offered starting at 24 (+0/7) weeks gestation What is new: * There was a wide variety in preferred treatment decisions at the limits of viability especially when aspects were not covered in the Dutch national guideline on perinatal practice in extreme prematurity

A patient-centered network approach to multidisciplinary-guideline development: a process evaluation

Contains fulltext : 137918.pdf (publisher's version ) (Open Access)BACKGROUND: Guideline development and uptake are still suboptimal; they focus on clinical aspects of diseases rather than on improving the integration of care. We used a patient-centered network approach to develop five harmonized guidelines (one multidisciplinary and four monodisciplinary) around clinical pathways in fertility care. We assessed the feasibility of this approach with a detailed process evaluation of the guideline development, professionals' experiences, and time invested. METHODS: The network structure comprised the centrally located patients and the steering committee; a multidisciplinary guideline development group (gynecologists, physicians, urologists, clinical embryologists, clinical chemists, a medical psychologist, an occupational physician, and two patient representatives); and four monodisciplinary guideline development groups. The guideline development addressed patient-centered, organizational, and medical-technical key questions derived from interviews with patients and professionals. These questions were elaborated and distributed among the groups. We evaluated the project performance, participants' perceptions of the approach, and the time needed, including time for analysis of secondary sources, interviews with eight key figures, and a written questionnaire survey among 35 participants. RESULTS: Within 20 months, this approach helped us develop a multidisciplinary guideline for treating infertility and four related monodisciplinary guidelines for general infertility, unexplained infertility, male infertility, and semen analysis. The multidisciplinary guideline included recommendations for the main medical-technical matters and for organizational and patient-centered issues in clinical care pathways. The project was carried out as planned except for minor modifications and three extra consensus meetings. The participants were enthusiastic about the approach, the respect for autonomy, the project coordinator's role, and patient involvement. Suggestions for improvement included timely communication about guideline formats, the timeline, participants' responsibilities, and employing a librarian and more support staff. The 35 participants spent 4497 hours in total on this project. CONCLUSIONS: The novel patient-centered network approach is feasible for simultaneously and collaboratively developing a harmonized set of multidisciplinary and monodisciplinary guidelines around clinical care pathways for patients with fertility problems. Further research is needed to compare the efficacy of this approach with more traditional approaches

Nurse-led video-coaching interventions in childhood, adolescent and young adult cancer survivors (REVIVER): a protocol for mixed methods feasibility research

Contains fulltext : 215288.pdf (publisher's version ) (Open Access)Background: Successful cancer treatment can lead to cancer survivors being predisposed to an increased lifelong risk of adverse late health effects. Therefore, high-quality cancer survivorship care to earlier detect and treat late effects or to preserve survivor's health is essential. Nevertheless, this care needs to be sustainable and cost-effective as well. We developed three different screen-to-screen nurse-led eHealth interventions for survivors of childhood, adolescent and young adult-onset cancer, collectively called the REVIVER interventions. Elaborating on person-centred care principles with content based on cognitive behavioural therapy modules and/or motivational interviewing techniques, these interventions aim to empower and coach survivors to improve (1) symptoms of cancer-related fatigue, (2) self-efficacy and self-management or (3) lifestyle. With the REVIVER study, we aim to evaluate the interventions' feasibility and gain insights into the potential effectiveness. Methods: The REVIVER study involves a mixed methods design, including (1) interviews till data saturation with cancer survivors who completed the interventions as well as with all involved medical professionals, (2) reviews of nurses reports and (3) a single-group, pre-post evaluation among cancer survivors. Eligible survivors are survivors of childhood, adolescent and young adult-onset cancer who are referred to one of the interventions, in complete remission of cancer, 16-44 years old at enrolment, completed treatment at least 5 years ago and have access to a device with Internet options. We will assess feasibility in terms of demand, adherence, acceptability, practicality and integration/implementation. Health-related quality of life, as primary outcome of the potential effectiveness evaluation, will be assessed at three different time points: prior to the intervention; immediately following the intervention and 6 months post-intervention. Secondary outcome measures include changes in level of fatigue, self-efficacy, self-management and lifestyle. Discussion: This is the first study to evaluate the feasibility and potential effectiveness of eHealth nurse-led interventions elaborating on person-centred care, using cognitive behavioural therapy and/or motivational interviewing techniques as an innovative and promising approach for providing CAYA cancer survivorship care. If the interventions prove to be feasible and potential effective, a randomized controlled trial will be conducted to test the (cost)-effectiveness

Web-Based Guidance Through Assisted Reproductive Technology (myFertiCare): Patient-Centered App Development and Qualitative Evaluation

Contains fulltext : 236990.pdf (Publisher’s version ) (Open Access

Factors influencing decision-making around opportunistic salpingectomy: a nationwide survey

Contains fulltext : 201043.pdf (publisher's version ) (Open Access

Patient decision aids for patients with differentiated thyroid carcinoma: development process and alpha and beta testing.

BACKGROUND: Patient decision aids (PtDAs) are structured clinical tools that facilitate shared decision-making. Two important treatment decisions for patients with differentiated thyroid cancer (DTC), which could benefit from PtDAs, are as follows (1): the extent of surgery decision in patients with low-risk DTC and (2) the decision to start or delay starting the treatment with tyrosine kinase inhibitors (TKIs) in patients with advanced tumors. MATERIAL AND METHODS: PtDAs for these two decisions were developed using the International Patient Decision Aids Standards (IPDAS) quality criteria in an iterative process of prototype development via alpha and beta testing by patients and physicians. The information content of the PtDAs was based on the available literature, current guidelines, and patient's needs, preferences, and values. RESULTS: The web-based PtDAs underwent two rounds of alpha testing, revisions, and beta testing. The PtDAs have the same structure, consisting of six steps: a general introduction, information about the treatment options, comparing the treatment options, knowledge questions, a values clarification exercise, and saving the information. The alpha testing (n = 8 patients, n = 10 physicians) showed that the PtDAs were highly acceptable and usable for decision-making. Results of the beta testing in 20 patients showed that two patients did not use the PtDA; the other 18 patients found that the PtDAs were readable (n = 17) and helpful (n = 14) for decision-making. All patients recommend using the PtDAs. CONCLUSIONS: Evidence-based PtDAs were created for patients with DTC for two different treatment decisions. Our final version was judged to be clear, balanced, and helpful in decision-making