Purpose Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs. Methods We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation. Results Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs. Conclusion Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/ PREM integration and sustainability.

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Purpose During the COVID-19 pandemic in the Netherlands, governmental regulations resulted in a lockdown for adults as well as children/adolescents. Schools were closed and contact with other people was limited. In this cross-sectional, population-based study, we aimed to investigate the mental/social health of children/adolescents during COVID-19 lockdown. Methods Two representative samples of Dutch children/adolescents (8–18 years) before COVID-19 (2018, N = 2401) and during lockdown (April 2020, N = 844) were compared on the Patient-Reported Outcomes Measurement Information System (PROMIS) domains: global health, peer relationships, anxiety, depressive symptoms, anger, sleep-related impairment by linear mixed models and calculating relative risks (RR (95% CI)) for the proportion of severe scores. Variables associated with worse mental/social health during COVID-19 were explored through multivariable regression models. The impact of COVID-19 regulations on the daily life of children was qualitatively analyzed. Results Participants reported worse PROMIS T-scores on all domains during COVID-19 lockdown compared to before (absolute mean difference range 2.1–7.1 (95% CI 1.3–7.9). During lockdown, more children reported severe Anxiety (RR = 1.95 (1.55–2.46) and Sleep-Related Impairment (RR = 1.89 (1.29–2.78) and fewer children reported poor Global Health (RR = 0.36 (0.20–0.65)). Associated factors with worse mental/social health were single-parent family, ≥ three children in the family, negative change in work situation of parents due to COVID-19 regulations, and a relative/friend infected with COVID-19. A large majority (> 90%) reported a negative impact of the COVID-19 regulations on daily life. Conclusion This study showed that governmental regulations regarding lockdown pose a serious mental/social health threat on children/adolescents that should be brought to the forefront of political decision-making and mental healthcare policy, intervention, and prevention.

We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital Anxiety and Depression Scale. Scores were compared to a Dutch reference group by analysis of variance and logistic regression analysis. Linear regression analyses were performed to examine which variables were associated with anxiety and depression. Mothers of a chronically ill child (n = 566) scored significantly higher than the reference group (p < .001) on anxiety (Mean 5.9 vs 4.8) and depression (Mean 4.5 vs 3.1). Fathers (n = 123) had higher depression scores (Mean 4.5 vs 3.6; p < .05), but fathers' anxiety scores were comparable to the reference group. The percentages of mothers in the clinical range of anxiety (31.8 vs 20.7 %, OR 2.03, 95 % CI 1.46-2.83) and depression (23.0 vs 12.0 %, OR 2.76, 95 % CI 1.84-4.13) were higher (p < .001) than in the reference group. No differences were found for fathers in the clinical range for anxiety and depression. Practical problems in daily life (a: β = .33, d: β = .25) and parenting stress (a: β = .30, d: β = .32) showed the strongest association with anxiety and depression for parents as a group. Illness-related characteristics of the child were not related. Parents of a chronically ill child, especially mothers, reported high levels of anxiety and depression. Awareness about parental anxiety and depression in pediatrics is important as well as targeted interventions.

The use of patient reported outcomes (PROs) in pediatric practice is effective in increasing discussion about emotional and psychosocial functioning. This finding forms the basis for implementing KLIK: a web-based program using electronic PROs (ePROs). The aim of this article is to describe the KLIK implementation in line with the 8 methodological recommendations composed by the International Society for Quality of Life Research (ISOQOL). (1) Goal of KLIK: to monitor and screen children (aged 0–18) with chronic illnesses over extended periods of time. (2) Children aged 8–18 complete the questionnaires themselves. Parents complete the questionnaires for young children. (3) The basis is a generic HRQOL questionnaire. Disease-specific HRQOL and psychosocial questionnaires are also available. (4) A web-based mode was selected. (5) The questionnaires in KLIK are available prior to a consultation. Pediatricians retrieve the ePROfile from the website (www.hetklikt.nu) and discuss it with the patients. The ePROfile consists of a literal representation of the answers and a graphic presentation. (6) Various tools are used to aid in its interpretation. (7) All members of the multidisciplinary team receive training in how to use the website and how to adequately respond to the patient’s ePROfile. (8) Improvements to and evaluation of KLIK are ongoing. Since implementation began, 17 patient groups, 160 professionals and >1,450 patients have started using KLIK. The implementation of KLIK appears to be feasible and workable. Many pediatricians have shown an interest in using KLIK and it is therefore being expanded and adapted for different patient groups and hospitals.

Importance: It is unknown how a lockdown during the COVID-19 pandemic impacts childrens and adolescents mental and social health. Objective: To compare mental and social health of children and adolescents during the COVID-19 lockdown versus before, identify associated factors, describe the change in atmosphere at home and qualitatively assess the impact of COVID-19 regulations on daily life. Design: Cross-sectional study comparing two Dutch representative samples of children and adolescents (8-18 years); before COVID-19 (Dec2017-July2018) and during the COVID-19 lockdown (April/May 2020). Setting: Population-based Participants: Children and adolescents aged 8-18 years (M=13.4, 47.4% male), representative of the Dutch population on key demographics. Exposure(s): COVID-19 pandemic lockdown Main Outcome(s) and Measure(s): Patient-Reported Outcomes Measurement Information System (PROMIS) domains: Global Health, Peer Relationships, Anxiety, Depressive Symptoms, Anger and Sleep-Related Impairment. Single item on atmosphere at home and open question regarding the impact of the regulations on the childs/adolescents daily life Results: Children and adolescents reported significantly worse PROMIS T-scores on all domains (absolute mean difference range, 2.1-7.1; absolute 95% CI range, 1.3-7.9) during the COVID-19 lockdown as compared to before COVID-19. More children reported severe Anxiety (during 16.7% vs. before 8.6%; relative risk 1.95; 95% CI 1.55-2.46) and Sleep-Related Impairment (during 11.5% vs. before 6.1%; relative risk 1.89; 95% CI 1.29-2.78). Fewer children reported poor Global Health (during 1.7 vs. before 4.6%; relative risk 0.36; 95% CI 0.20-0.65). More mental and social health complaints during the COVID-19 lockdown were found in children and adolescents growing up in a single-parent family, having >three children in the family, a negative change in work situation of parents due to COVID-19 regulations, and having a relative/friend infected with COVID-19. A small effect was found on atmosphere at home during the lockdown compared to before (mean difference, -3.1; 95% CI, -4.1 - -2.1). A large majority (>90%) reported a negative impact of the COVID-19 regulations on their daily life. Conclusions and Relevance: This study showed that governmental regulations regarding lockdown pose a serious mental and social health threat on children and adolescents that should be brought to the forefront of political decision making and mental health care policy, intervention and prevention.

PurposeThe aim of this study was to provide Dutch normative data for the Distress Thermometer for Parents (DT-P) and to assess internal consistency and known-groups validity.MethodsA sample of 1421 parents (60.7 % mothers), representative of the Dutch population, completed online sociodemographic questionnaire and the DT-P, which includes a thermometer (0 (no distress) to 10 (extreme distress), ≥4 clinically elevated distress) and everyday problems across six problem domains (practical, social, emotional, physical, cognitive, and parenting). Internal consistency was calculated using Cronbach’s alphas. Known-groups validity was assessed by comparing parents of a child with a chronic condition (N = 287, 20.2 %) with parents of healthy children, using Mann–Whitney U tests and Chi-square tests.ResultsThe DT-P showed acceptable internal consistency (Cronbach’s alphas = .52–.89). Parents of a child with a chronic condition more often reported clinically elevated distress than parents of healthy children (53.0 versus 38.2 %, p < .001). Also, on all domains they reported more problems (p = .000–.022). Normative scores for mothers and fathers separately were provided.ConclusionThe DT-P distinguishes well between parents of a child with and without a chronic condition. With the current norms available, distress can be evaluated in parents of a child with a chronic condition compared to parents of healthy children in pediatric clinical practice.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-016-1405-4) contains supplementary material, which is available to authorized users.

BackgroundIdentification of children at risk for psychosocial problems is important to be able to provide supportive and tailored care at an early stage. Due to its brevity and wide age range, the Strengths and Difficulties Questionnaire (SDQ) Parent Form is an appropriate instrument for use in paediatric clinical practice as it facilitates assessment of psychosocial functioning from young childhood into adulthood. The aim of the present study was to provide Dutch normative data for the SDQ Parent Form.MethodsA sample of 1947 parents with children aged 2–18 years was drawn from a large panel of a Dutch research agency, stratified on Dutch key demographics of the parents.The SDQ Parent Form assesses the child’s Emotional symptoms, Conduct problems, Hyperactivity-Inattention, Peer problems and Prosocial behaviour. Summary scores can be calculated: Internalising, Externalising and Total difficulties.Internal consistency (Cronbach’s alpha coefficient) and normative scores (mean, median, clinical cut-off scores) of the SDQ- Parent Form were calculated in four age-groups 2–3, 4–5, 6–11 and 12–18 years. Gender differences were tested with independent t-tests.ResultsA total of 1174 parents (60.3%) completed the SDQ. In the age-groups 2–3 and 4–5, norm scores are not available for Conduct problems and Peer problems due to insufficient internal consistency. In addition, in age-group 2–3, norm scores for Emotional symptoms and Internalising are not available because of insufficient internal consistency. In the age-groups 6–11 and 12–18, norm scores are available for all scales, with Cronbach’s alpha coefficients 0.53–0.86. The comparison by gender revealed that boys had more behavioural problems than girls (0.000 < p < 0.048), most prevalent for Hyperactivity-Inattention, Peer Problems, Prosocial behaviour, Externalising and Total Difficulties.ConclusionsDutch normative data by age-group and gender are now available for parent-reported SDQ scores in children aged 2–18 years. Due to insufficient internal consistency, normative scores for 2–5 year-old children could not be presented for several SDQ scales. Yet, the SDQ Total score provides a reliable indication of the psychosocial functioning of younger children. In case of high Total scores in children younger than 6 years, alternatively to scale scores, the answers on the individual items could yield useful clinical information about the child’s problems.