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BackgroundSelf-reported medical history information is included in many studies. However, data on the validity of Web-based questionnaires assessing medical history are scarce. If proven to be valid, Web-based questionnaires may provide researchers with an efficient means to collect data on this parameter in large populations. ObjectiveThe aim of this study was to assess the validity of a Web-based questionnaire on chronic medical conditions, allergies, and blood pressure readings against obstetric records and data from general practitioners. MethodsSelf-reported questionnaire data were compared with obstetric records for 519 pregnant women participating in the Dutch PRegnancy and Infant DEvelopment (PRIDE) Study from July 2011 through November 2012. These women completed Web-based questionnaires around their first prenatal care visit and in gestational weeks 17 and 34. We calculated kappa statistics (κ) and the observed proportions of positive and negative agreement between the baseline questionnaire and obstetric records for chronic conditions and allergies. In case of inconsistencies between these 2 data sources, medical records from the woman’s general practitioner were consulted as the reference standard. For systolic and diastolic blood pressure, intraclass correlation coefficients (ICCs) were calculated for multiple data points. ResultsAgreement between the baseline questionnaire and the obstetric record was substantial (κ=.61) for any chronic condition and moderate for any allergy (κ=.51). For specific conditions, we found high observed proportions of negative agreement (range 0.88-1.00) and on average moderate observed proportions of positive agreement with a wide range (range 0.19-0.90). Using the reference standard, the sensitivity of the Web-based questionnaire for chronic conditions and allergies was comparable to or even better than the sensitivity of the obstetric records, in particular for migraine (0.90 vs 0.40, P=.02), asthma (0.86 vs 0.61, P=.04), inhalation allergies (0.92 vs 0.74, P=.003), hay fever (0.90 vs 0.64, P=.001), and allergies to animals (0.89 vs 0.53, P=.01). However, some overreporting of allergies was observed in the questionnaire and for some nonsomatic conditions sensitivity of both measurement instruments was low. The ICCs for blood pressure readings ranged between 0.72 and 0.92 with very small mean differences between the 2 methods of data collection. ConclusionsWeb-based questionnaires can be used to validly collect data on many chronic disorders, allergies, and blood pressure readings among pregnant women.

Purpose: Adolescents with cancer (aged 12–18 years) are at risk for impaired health-related quality of life (HRQoL). Little is known about this population during treatment. This study aimed to (1) determine the HRQoL of adolescents with cancer during the first year of treatment and compare them with age-matched peers and (2) obtain insight into cancer-specific HRQoL of adolescents during the first year of treatment. Methods: Participants were part of a larger study focused on routine monitoring of electronic reported outcomes in standard pediatric oncology care. Adolescents completed the pediatric quality of life inventory (PedsQL) 4.0 and the PedsQL Cancer Module 3.0. Mean generic HRQoL scale scores were compared between the groups using multivariate analysis of covariance. Cancer-specific item scores were dichotomized and percentages were calculated to determine the proportion of adolescents reporting presence or absence of problems. Results: A total of 73 (mean [M]age = 14.71, standard deviation [SD] = 1.85) adolescents with cancer (Mage = 14.71, SD = 1.85, Mtimesincediagnosis = 3.51 months, SD = 2.8) and 268 healthy peers (Mage = 14.23, SD = 1.51) participated. Adolescents with cancer reported significantly lower generic HRQoL scores on all domains than their peers (p's <0.05, η2 = 0.01–0.42). Most frequently reported cancer-specific HRQoL problems were pain (hurt joint/muscle, 42.9%), nausea (during medical treatments [47.1%]; food not tasting good [54.3%]; food and smells [61.4%]), worry (about relapse [45.7%]; about side effects [52.9%]), cognitive problems (paying attention [47.1%]), and physical appearance (not good looking [47.1%]). Conclusions: Adolescents with cancer showed impaired HRQoL during treatment on both physical and psychosocial domains. Close monitoring of physical and psychosocial symptoms during treatment is, therefore, important. [ABSTRACT FROM AUTHOR]

Background: Depression and anxiety during pregnancy are associated with adverse health outcomes for both mother and child. This study aims to investigate the occurrence of symptoms of depression and anxiety in early and late pregnancy, the longitudinal changes from early to late pregnancy, and factors associated with symptoms of depression and anxiety in pregnant women in the Netherlands. Methods: We studied 2897 women participating in the PRegnancy and Infant DEvelopment (PRIDE) Study. To assess symptoms of depression and anxiety, web‐based questionnaires including the Hospital Anxiety and Depression Scale (HADS) and multiple questions on maternal characteristics were completed in early and late pregnancy. Cross‐sectional and longitudinal multivariable linear regression analyses were conducted. Results: The depressive symptoms in our population increased, with a prevalence of probable depression from 5.4% in early pregnancy to 10.0% in late pregnancy (P < .001), whereas the anxiety symptoms decreased, with a prevalence of probable anxiety from 17.9% to 14.2% (P < .001). Characteristics associated with depressive or anxiety symptoms included low level of education, multiparity, a history of depression, severe nausea, extreme fatigue, lack of physical exercise, and negative life events. Being non‐Dutch, not living with a partner, and having an unplanned pregnancy or a long time to pregnancy were associated with the depressive and/or anxiety symptoms in early pregnancy only. Discussion: Symptoms of depression and anxiety are common in both early and late pregnancy. Screening for risk factors in early pregnancy is important, since prenatal depression and anxiety may be related to adverse maternal and child health outcomes. [ABSTRACT FROM AUTHOR]

Background: This study was aimed at assessing fathers' and mothers' distress 6 months after a pediatric cancer diagnosis and at determining whether this is related to the level of family psychosocial risk 1 month after the diagnosis.Methods: A sample of 192 families completed the electronic Psychosocial Assessment Tool (ePAT) 1 month after the diagnosis. At 6 months after the diagnosis, 119 mothers and 98 fathers completed the Distress Thermometer for Parents (DT-P; of which n=132 had also completed the ePAT at baseline). The DT-P consists of a thermometer score ranging from 0 to 10 (with a score ≥ 4 indicating clinical distress), problem domains (total, practical, social, emotional, physical, cognitive, and parenting for children < 2 years old and for children ≥ 2 years old), and a desire for a referral. The DT-P scores of mothers and fathers were compared with the scores of a reference group of 671 mothers and 463 fathers with healthy children. Within the pediatric cancer group, the DT-P scores of families with elevated total ePAT-scores were compared with the DT-P scores of parents with universal ePAT scores.Results: Parents of children with cancer more often reported clinical distress on the DT-P than parents of healthy children (fathers, 59.2% vs 32.3%; P < .001; mothers, 63% vs 42.3%; P < .001) and reported more problems on all DT-P domains (P < .001 to P = .042) except for the parenting domain for children < 2 years old. Furthermore, the ePAT predicted parental distress 6 months after the diagnosis because parents with elevated ePAT scores reported more problems than parents with universal scores on the DT-P thermometer and most of the DT-P domains (P < .001 to P = 1.00).Conclusions: Initial ePAT risk scores at diagnosis are predictive of future mean levels of parental distress. Cancer 2018;124:381-90. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

Objective: The Psychosocial Assessment Tool (PAT) was developed to screen for psychosocial risk in families of a child diagnosed with cancer. The current study is the first describing the cross-cultural adaptation, reliability, validity, and usability of the PAT in an European country (Dutch translation).Methods: A total of 117 families (response rate 59%) of newly diagnosed children with cancer completed the PAT2.0 and validation measures.Results: Acceptable reliability was obtained for the PAT total score (α = .72) and majority of subscales (0.50-0.82). Two subscales showed inadequate internal consistency (Social Support α = .19; Family Beliefs α = .20). Validity and usability were adequate. Of the families, 66% scored low (Universal), 29% medium (Targeted), and 5% high (Clinical) risk.Conclusions: This study confirms the cross-cultural applicability, reliability, and validity of the PAT total score. Reliability left room for improvement on subscale level. Future research should indicate whether the PAT can be used to provide cost-effective care. [ABSTRACT FROM AUTHOR]

Purpose To investigate the needs and preferences of parents of children with type 1 diabetes ( T1D) concerning pediatric diabetes care and use of Internet in care. Design and Methods Parents of 34 children, aged 2-12, with T1D participated in seven focus group interviews. Results Analysis revealed provision of tailored care, disease information, peer support, and accessibility of healthcare professionals as major needs in parents. Internet could be used to satisfy these needs. Practical Implications According to parents, diabetes teams should focus on the impact of the disease, parents' experience, and the child's development, and provide online professional and peer support. [ABSTRACT FROM AUTHOR]

Background Type 1 diabetes demands a complicated disease self-management by child and parents. The overwhelming task of combining every day parenting tasks with demands of taking care of a child with diabetes can have a profound impact on parents, often resulting in increased parenting stress. Tailored disease information, easy accessible communication with healthcare professionals and peer support are found to support parents to adequately cope with the disease and the disease self-management in everyday life. Internet can help facilitate these important factors in usual pediatric diabetes care. Therefore, we will develop a webbased patient portal in addition to usual pediatric care and subsequently evaluate its efficacy and feasibility. The web-based patient portal, called Sugarsquare, provides online disease information, and facilitates online parent-professional communication and online peer support. We hypothesize that parenting stress in parents of a child with type 1 diabetes will decrease by using Sugarsquare and that Sugarsquare will be feasible in this population. Methods/Design We will test the hypotheses using a multicenter randomized controlled trial. Eligible participants are parents of a child with type 1 diabetes under the age of 13. Parents are excluded when they have no access to the internet at home or limited comprehension of the Dutch language. Participants are recruited offline from seven clinics in the Netherlands. Participants are randomly allocated to an intervention and a control group. The intervention group will receive access to the intervention during the twelve-month study-period; the control group will receive access in the last six months of the study-period. Self-reported parenting stress is the primary outcome in the present study. Data will be gathered at baseline (T0) and at six (T1) and twelve (T2) months following baseline, using online questionnaires. User statistics will be gathered throughout the twelve-month study-period for feasibility. Discussion Dependent on its feasibility and efficacy, the intervention will be implemented into usual pediatric diabetes care. Strengths and limitations of the study are discussed. [ABSTRACT FROM AUTHOR]

Background To optimise the health of pregnant women and their children by evidence-based primary and secondary prevention, more scientific knowledge is needed. To overcome the methodological limitations of many studies on pregnancy and child health, which often use a retrospective design, we established the PRIDE ( PRegnancy and Infant DEvelopment) Study. Methods and Results The PRIDE Study is a large prospective cohort study that aims at including 150 000-200 000 women in early pregnancy to study a broad range of research questions pertaining to pregnancy complications, maternal and child health, and adverse developmental effects in offspring. Women are invited to participate by their prenatal care provider before or at their first prenatal care visit and are asked to fill out web-based questionnaires in gestational weeks 8-10, 17, and 34, as well as biannually throughout childhood. In addition, a food frequency questionnaire and a paternal questionnaire are administered and medical records are consulted. Multiple validation studies will be conducted and paper-and-pencil questionnaires are available for women who cannot or do not want to participate through the Internet. For subgroups of participants, blood and saliva samples for genetic and biochemical analyses are being collected. The pilot phase, which started in July 2011, showed a response rate of 47%. Recruitment will eventually cover all of the Netherlands. Conclusions We expect that this study, which will be the largest birth cohort in the world so far, will provide new insights in the aetiology of disorders and diseases that originate in pregnancy. The PRIDE Study is open for collaboration. [ABSTRACT FROM AUTHOR]

Parental decisional conflict and decisional regret are aspects in parental adjustment to childhood elective surgery. This study assessed correlates of parental decisional regret in parents of young boys treated for hypospadias. Parents of 261 boys treated for hypospadias at the Radboudumc between 2006 and 2014 were approached to complete questionnaires on socio-demographics, clinical details, postoperative outcomes, decisional conflict and decisional regret. Of the 97 participating parents, 50.5% reported some form of decisional regret, in 11.3% this was moderate to strong. Decisional conflict (β =.68, p <.001) and psychosocial behavior problems of the child (β =.20, p <.05) significantly predicted decisional regret. Demographic and medical variables did not correlate with parental decisional regret. A substantial number of parents report some form of decisional regret regarding the elective surgery for hypospadias in their child. Although most parents only show mild forms of regret, in the perspective of discussions on this surgery in early childhood, future research could shed more light on the interrelationship between medical and psychosocial factors in the process of decision-making around surgery, in boys with hypospadias and their parents. Summary Table Predictors of parental Decisional Regret (n = 97). Summary Table R2 F p Regression.52 49.86 <.01 Β SE t p Decisional conflict.68.10 9.41 <.01 Psychosocial behavior.20.15 2.74.01 [ABSTRACT FROM AUTHOR]

Background: Raising a child with type 1 diabetes (T1D) means combining the demands of the disease management with everyday parenting, which is associated with increased levels of distress. A Web-based patient portal, Sugarsquare, was developed to support parents, by providing online parent-professional communication, online peer support and online disease information.Objective: The first aim of this study was to assess the feasibility of conducting a multicenter, randomized controlled trial in Dutch parents of a child with T1D. The second aim was to assess the feasibility of implementing Sugarsquare in clinical practice.Methods: The parents of 105 children (N=105) with T1D below the age of 13 participated in a 6-month multicenter randomized controlled feasibility trial. They were randomly assigned to an experimental (n=54, usual care and Sugarsquare) or a control group (n=51, usual care). Attrition rates and user statistics were gathered to evaluate feasibility of the trial and implementation. To determine potential efficacy, the parenting stress index (PSI-SF) was assessed at baseline (T0) and after 6 months (T1).Results: Of a potential population of parents of 445 children, 189 were willing to participate (enrollment refusal=57.5%, n=256), 142 filled in the baseline questionnaire (baseline attrition rate=25%, n=47), and 105 also filled in the questionnaire at T1 (post randomization attrition rate during follow-up=26%, n=32). As such, 24% of the potential population participated. Analysis in the experimental group (n=54) revealed a total of 32 (59%) unique users, divided into 12 (38%) frequent users, 9 (28%) incidental users, and 11 (34%) low-frequent users. Of the total of 44 professionals, 34 (77%) logged in, and 32 (73%) logged in repeatedly. Analysis of the user statistics in the experimental group further showed high practicability and integration in all users, moderate acceptability and demand in parents, and high acceptability and demand in health care professionals. Baseline parenting stress index scores were related to the parents' frequency of logging on (ρ=.282, P=.03) and page-views (ρ=.304, P=.01). No significant differences in change in parenting stress between experimental and control group were found (F3,101=.49, P=.49).Conclusions: The trial can be considered feasible, considering the average enrollment refusal rate, baseline attrition rate and postrandomization attrition rate, compared to other eHealth studies, although lower than hypothesized. Implementing Sugarsquare in clinical practice was partly feasible, given moderate demand and acceptability in parent users and lack of potential efficacy. Parents who reported higher levels of parenting stress used Sugarsquare more often than other parents, although Sugarsquare did not reduce parenting stress. These results indicate that Web-based interventions are a suitable way of providing parents of children with T1D with additional support. Future studies should determine how Sugarsquare could reduce parenting stress, for instance by adding targeted interventions. Factors potentially contributing to successful implementation are suggested.Trial Registration: Nederlands Trial Register Number: NTR3643; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3643 (Archived by WebCite at http://www.webcitation.org/6qihOVCi6). [ABSTRACT FROM AUTHOR]

Background: Self-reported medical history information is included in many studies. However, data on the validity of Web-based questionnaires assessing medical history are scarce. If proven to be valid, Web-based questionnaires may provide researchers with an efficient means to collect data on this parameter in large populations. Objective: The aim of this study was to assess the validity of a Web-based questionnaire on chronic medical conditions, allergies, and blood pressure readings against obstetric records and data from general practitioners. Methods: Self-reported questionnaire data were compared with obstetric records for 519 pregnant women participating in the Dutch PRegnancy and Infant DEvelopment (PRIDE) Study from July 2011 through November 2012. These women completed Web-based questionnaires around their first prenatal care visit and in gestational weeks 17 and 34. We calculated kappa statistics (κ) and the observed proportions of positive and negative agreement between the baseline questionnaire and obstetric records for chronic conditions and allergies. In case of inconsistencies between these 2 data sources, medical records from the woman's general practitioner were consulted as the reference standard. For systolic and diastolic blood pressure, intraclass correlation coefficients (ICCs) were calculated for multiple data points. Results: Agreement between the baseline questionnaire and the obstetric record was substantial (κ=.61) for any chronic condition and moderate for any allergy (κ=.51). For specific conditions, we found high observed proportions of negative agreement (range 0.88-1.00) and on average moderate observed proportions of positive agreement with a wide range (range 0.19-0.90). Using the reference standard, the sensitivity of the Web-based questionnaire for chronic conditions and allergies was comparable to or even better than the sensitivity of the obstetric records, in particular for migraine (0.90 vs 0.40, /P/=.02), asthma (0.86 vs 0.61, /P/=.04), inhalation allergies (0.92 vs 0.74, /P/=.003), hay fever (0.90 vs 0.64, /P/=.001), and allergies to animals (0.89 vs 0.53, /P/=.01). However, some overreporting of allergies was observed in the questionnaire and for some nonsomatic conditions sensitivity of both measurement instruments was low. The ICCs for blood pressure readings ranged between 0.72 and 0.92 with very small mean differences between the 2 methods of data collection. Conclusions: Web-based questionnaires can be used to validly collect data on many chronic disorders, allergies, and blood pressure readings among pregnant women. [ABSTRACT FROM AUTHOR]

Uncertainty is increasingly recognized as a crucial phenomenon throughout medical practice. Research on uncertainty so far has been scattered across disciplines, leading to a lack of consensus about what uncertainty represents and minimal integration of knowledge obtained within isolated disciplines. Currently, a comprehensive view of uncertainty which does justice to normatively or interactionally challenging healthcare settings is lacking. This impedes research teasing apart when and how uncertainty manifests, how all stakeholders experience and value it, and how it affects medical communication and decision-making. In this paper, we argue that we need a more integrated understanding of uncertainty. We illustrate our argument using the context of adolescent transgender care, in which uncertainty occurs in myriad ways. We first sketch how theories of uncertainty have emerged from isolated disciplines, leading to a lack of conceptual integration. Subsequently, we emphasize why it is problematic that no comprehensive approach to uncertainty has yet been developed, using examples from adolescent transgender care. Finally, we advocate an integrated approach of uncertainty to further advance empirical research and to ultimately benefit clinical practice. [ABSTRACT FROM AUTHOR]

Hospitals and clinics develop Internet strategies to emancipate and empower their patient population. At Radboud University Nijmegen Medical Centre, we developed an Internet-based personal health record that provides patients with general and personal information about their treatment and that provides facilities for communication with fellow patients and with physicians. Because not much is known about information and communication needs of IVF and ICSI patients in relation to their treatment, we observed the intensity of use of this personal health record during the various stages of IVF treatment. We measured the numbers of page views and the number of contributions to the chat room. Data regarding Website use and treatment schedules were available for 51 couples. These couples generated 25,420 page views and posted 11,403 utterances. Two-way analysis of variance showed that significant individual changes occurred in the intensity of use during the different stages of the treatment. During the stages in which there is no contact between the patient and the clinic, patients make use of the Website''s communication functions. This reflects the patients'' need for continued communication and support during the last stages of treatment, a service that IVF clinics traditionally cannot or do not provide. [Copyright &y& Elsevier]