Satisfaction with a new patient education program for children, adolescents, and young adults with differences of sex development (DSD) and their parents.

Objective: Evaluation of the participant satisfaction with a newly developed interdisciplinary, modular education program for children, adolescents, and young adults with differences of sex development (DSD) and their parents. Methods: The two-day program including tailored medical information, peer consultation and psychological support aimed to improve diagnosis-specific knowledge and empowerment. Post-training satisfaction was measured using an adapted ZUF-8 questionnaire, scoring from 5 (worst) to a maximum of 26 (best) for persons aged 6-17 and from 10 to 40 points for adults, including 2 open-ended questions. Results: The questionnaire, completed by 89 children (6-13 years), 92 adolescents (14-17 years), 47 young adults (18-24 years), and 345 parents, revealed consistent high satisfaction with the program regardless of age or diagnosis (children 24.4 ± 2.1, adolescents 23.5 ± 2.7; young adults 36.0 ± 4.0, parents 36.6 ± 3.4). Neither sociodemographic factors nor diagnosis burden, shame, or informedness showed relevant associations with satisfaction levels. Participants highlighted exchange and open atmosphere as key satisfaction elements. Conclusion: Satisfaction with the new education program was high in all examined groups. Implementing it in routine care requires further analysis to determine the program's long-term effects on well-being and knowledge. Innovation: The first educational program for young people with DSD addressing their specific challenges through inclusive language, an open approach to sex and gender and the inclusion of self-help groups.

Transition competence as an indicator of health outcomes related to transition.

BACKGROUND: Adolescents and young adults (AYAs) with chronic conditions face a transfer, defined as an actual shift from paediatric to adult-oriented health care. Transition competence as the self-perceived knowledge, skills and abilities regarding the transition process was considered extremely useful. AIM: This study was designed to investigate the impact of transition competence before and after the transfer on disease-specific quality of life (QoL) and health care satisfaction of AYAs with diabetes. RESULTS: In total, a sample of N = 90 AYAs with diabetes self-reported their transition competence, diabetes-specific QoL and satisfaction with care. Multiple linear regressions were used to analyse the impact of transition competence on satisfaction with care and QoL. Transition competence positively influenced the outcomes of satisfaction with care and QoL. CONCLUSION: Young adults with diabetes showed higher transition competence scores than adolescents with diabetes.

Real-World Use of Continuous Glucose Monitoring Systems Among Adolescents and Young Adults With Type 1 Diabetes: Reduced Burden, but Little Interest in Data Analysis.

BACKGROUND: Since 2016, German health insurance companies reimburse continuous glucose monitoring (CGM) systems for persons with insulin-dependent diabetes, leading to a tremendous increase of CGM use. This study assessed the use of CGM, the satisfaction with, and the data analysis behavior among young people. METHODS: During a diabetes camp for young people from all over Germany, participants anonymously answered a questionnaire on their method of glucose monitoring, satisfaction and quality of CGM use, HbA1c, and diabetes distress (Problem Areas in Diabetes Scale [PAID]-5). RESULTS: A total of 308 participants (age 21.4 ± 3.5 years; 73% female; diabetes duration 10.1 ± 5.9 years) completed the questionnaire. Approximately, 25% used self-monitoring of blood glucose (SMBG), 46% intermittent-scanning continuous glucose monitoring (iscCGM), and 30% real-time continuous glucose monitoring (rtCGM). Mean HbA1c was slightly, but not significantly, higher among SMBG users compared with CGM users (8.0% ± 1.9% vs. 7.7% ± 1.4%; P = .791). Diabetes distress was not associated with the method of glucose monitoring (SMBG 5.6 vs. iscCGM 6.2 vs. rtCGM 6.5; P = .386). Overall, satisfaction with CGM use was very high; 98% of the CGM users reported better well-being with CGM compared with previous SMBG use. Only 19% of CGM users reported regular data analyses; their HbA1c was lower compared with other CGM users (7.2% ± 1.2% vs. 7.7% ± 1.4%; P = .039). CONCLUSIONS: In this large sample of young people, 75% were using a CGM system. Treatment satisfaction was very high, but CGM use was not associated with reduced diabetes distress or better glycemic control. However, young people who regularly analyzed their CGM data reported lower HbA1c levels.

[Transition-oriented patient education program for adolescents and young adults with ADHD]. / Transitionsorientierte Patientenschulung bei Adoleszenten und jungen Erwachsenen mit ADHS.

Transition-oriented patient education program for adolescents and young adults with ADHD Abstract. Background: The transition from child- to adult-centered treatment includes numerous challenges in the treatment of chronic disorders. This process can be further complicated by disease-specific characteristics of attention-deficit/hyperactivity disorders (ADHD). This secondary analysis evaluated a transition workshop in individuals with ADHD. Methods: In total, 56 adolescents and young adults with ADHD (age M = 17.3 years, SD = 1.1; 17.9 % female) and their parents were quasi-randomly assigned to a control group (CG, n = 28) or an intervention group (IG, n = 28). The CG received regular medical care, whereas the IG additionally participated in a one-and-a-half-day transition workshop (ModuS-T). Before and 4 weeks after the intervention, transition competence was assessed with the Transition Competence Scale (TKS), patient activation with the Patient Activation Measure 13 for Adolescents (PAM® 13), and satisfaction with care with the Patient Satisfaction Questionnaire (ZUF-8). Results: The IG showed significantly improved transition competence (p ≤ .001) compared to the CG. There was no significant intervention effect in terms of patient activation (p = .194). Overall, the IG was highly satisfied with the workshop. Discussion: To date, transition workshops have been evaluated predominantly in individuals with chronic somatic disorders. This secondary analysis indicates that a generic workshop is also associated with improved transition competence and high satisfaction in individuals with chronic mental disorders. The integration of such approaches into routine care needs to be discussed.

Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of Empower-DSD.

BACKGROUND: Differences in sexual development (DSD) are rare diseases, which affect the chromosomal, anatomical or gonadal sex differentiation. Although patient education is recommended as essential in a holistic care approach, standardised programmes are still lacking. The present protocol describes the aims, study design and methods of the Empower-DSD project, which developed an age-adapted multidisciplinary education programme to improve the diagnosis-specific knowledge, skills and empowerment of patients and their parents. METHODS: The new patient education programme was developed for children, adolescents and young adults with congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome or XX-/or XY-DSD and their parents. The quantitative and qualitative evaluation methods include standardised questionnaires, semi-structured interviews, and participatory observation. The main outcomes (assessed three and six months after the end of the programme) are health-related quality of life, disease burden, coping, and diagnosis-specific knowledge. The qualitative evaluation examines individual expectations and perceptions of the programme. The results of the quantitative and qualitative evaluation will be triangulated. DISCUSSION: The study Empower-DSD was designed to reduce knowledge gaps regarding the feasibility, acceptance and effects of standardised patient education programmes for children and youth with DSD and their parents. A modular structured patient education programme with four generic and three diagnosis-specific modules based on the ModuS concept previously established for other chronic diseases was developed. The topics, learning objectives and recommended teaching methods are summarised in the structured curricula, one for each diagnosis and age group. At five study centres, 56 trainers were qualified for the implementation of the training programmes. A total of 336 subjects have been already enrolled in the study. The recruitment will go on until August 2022, the last follow-up survey is scheduled for February 2023. The results will help improve multidisciplinary and integrated care for children and youth with DSD and their families. TRIAL REGISTRATION: German Clinical Trials Register, DRKS00023096 . Registered 8 October 2020 - Retrospectively registered.

Two-Year Follow-Up of a Transition-Specific Education Program for Young People With Chronic Conditions.

PURPOSE: The transition to adulthood is a challenging process for young people (YP) with chronic conditions. Patient education can help to prepare them for autonomous disease management and transfer to adult healthcare services. In a previous controlled study, participation in the youth-specific group education program ModuS-T immediately improved transition-specific knowledge, competencies, and patient activation of YP with various chronic conditions. To evaluate whether these effects are long lasting, we questioned YP from the intervention group (IG) and the control group (CG; no program) 2 years after participation. METHODS: Standardized questionnaires were used to assess YP's transition-specific knowledge, competencies, patient activation, health-related quality of life, and medical care status at baseline and 2 years later. Repeated measurement covariance analyses were used for statistical testing. RESULTS: A total of 181 YP (109 IG, 72 CG) completed the questionnaires (60% of previous interviewees; mean age 20 years, 46% female). Compared to the CG, the IG reported significant improvements in transition-specific knowledge, competencies, and patient activation (p < .001) and lower parents' responsibility for their condition (p = .004). The proportion of YP who had already transferred to adult health care was nearly the same (54% IG/56% CG), but the CG was more likely to lose access to medical care (6% IG/14% CG). There were no effects on health-related quality of life. DISCUSSION: The 1.5-day ModuS-T program has long-lasting positive effects on knowledge and competencies relevant for the transition of YP. Transition-specific patient education programs close an important care gap and should be integrated into standard care.

Parental Disease Specific Knowledge and Its Impact on Health-Related Quality of Life.

OBJECTIVE: Structured education programs have been shown to improve somatic outcome and health-related quality of life (HRQOL) in a variety of chronic childhood diseases. Similar data are scarce in paediatric liver transplantation (pLTx). The purpose of this study was to examine the relationship of parental disease-specific knowledge and psychosocial disease outcome in patients after pLTx. METHODS: Parents of 113 children (chronic liver disease n = 25, after pLTx n = 88) completed the transplant module of the HRQOL questionnaire PedsQL, the "Ulm quality of life inventory for parents of children with chronic diseases" ULQUI, and a tailor-made questionnaire to test disease-specific knowledge. RESULTS: Parental knowledge was highest on the topic of "liver transplantation" and lowest in "basic background knowledge" (76% and 56% correct answers respectively). Knowledge performance was only marginally associated with HRQOL scores, with better knowledge being related to worse HRQOL outcomes. In contrast, self-estimation of knowledge performance showed significant positive correlations with both PedsQL and ULQUI results. CONCLUSION: Patient HRQOL and parental emotional wellbeing after pLTx are associated with positive self-estimation of parental disease-specific knowledge. Objective disease-specific knowledge has little impact on HRQOL. Parental education programs need to overcome language barriers and address self-efficacy in order to improve HRQOL after pLTx.

Health care transition from pediatric to adult care: an evidence-based guideline.

For consistent quality of treatment of young people with chronic health care needs, a structured health care transition (HCT) from pediatric medicine to adult medical care is essential. Currently, most countries have no guidelines on HCT based on systematic evidence research. To close this gap, guidance to support HCT was developed in Germany. Twenty-two experts in the management of adolescents and young adults with different chronic conditions and three patient representatives were invited to take part in the guideline group. Based on a systematic literature search recommendations for HCT were drafted. Where evidence was lacking, recommendations were developed using collective expert consensus. The consensus process was independently moderated using a Delphi approach. The final draft was reviewed and endorsed by all major German medical societies. The clinical recommendations provide guidance for all chronic somatic diseases. After assessment of HCT readiness, an individualized plan for HCT should be drawn up. Key elements here are a responsible coordinator, age-adapted patient education, involvement of caregivers, web-based interventions, joint visits, and a structured summary for the receiving physician. The aim is the gradual transfer of responsibility for disease management to the young person themselves.    Conclusion: As only a few randomized controlled studies on HCT are available, evidence-based statements are possible for some but not all areas of HCT. However, this guideline may help to develop globally accepted standards. These standards should be established and implemented. The aim should be a reimbursement by individual national health systems to allow appropriate support for young people. What is Known: • Health care transition from pediatric to adult care is primarily organized in local settings, partly based on disease-specific guidelines. •There have been no national guidelines in Germany until now. What is New: • Here we present the general evidence-based guidelines of the German Association of Scientific Medical Societies for health care transition. • These might serve as a blueprint for further national or international health care transition guidelines.

A Short Form of the Child/Youth Health Care Questionnaire on Satisfaction, Utilization, and Needs in Children and Adolescents with a Chronic Condition (CHC-SUN-SF/YHC-SUN-SF).

We decided to develop a short-form of the CHC-SUN/YHC-SUN, a questionnaire aiming at assessing health care satisfaction of children and adolescents with chronic health conditions. Data analysis was based on samples from three different studies. Item selection involved statistical analysis and expert consensus. For independent validation purposes, we calculated descriptive statistics on single-item and composite-scale levels and applied classic test theory, confirmatory factor analyses, and correlation analysis to investigate the psychometric properties of the final short-form by different types of reliability and validity. Internal consistency (Cronbach's Alpha) reached values of a = 0.89 (self-report) and a = 0.92 (parents report), split-half reliability values reached 0.85 (self-report) and 0.91 (parents report). Confirmatory factor analysis indicated no sufficient fit for the single factor solution, whereas the solution with three factors and one higher order factor indicated the best overall fit amongst three competing models. Validity of the short-form measure can be assumed, e.g., as indicated by its association with a single-item measure on general health care satisfaction. The short-form measures of the CHC-SUN for parents (CHC-SUN-SF) and the YHC-SUN self-report version for adolescents (YHC-SUN-SF) feature excellent psychometric performances, provide economical assessments, and are easy-to-administer questionnaires. They should be used whenever brief measures are needed for economic reasons.

Two Sides of a Coin: Parental Disease-Specific Training as Seen by Health Care Practitioners and Parents in Pediatric Liver Transplantation.

In the absence of widely accepted education standards for parents of children after liver transplantation (LTx), the content and structure of parental training are influenced by health care practitioners' (HCP) individual knowledge and assessment of the relevance of its contents. This study examines the hypothesis that expectations towards training differ between HCPs and parents, and that the quality of parental training affects the job-satisfaction of HCPs. Attitudes towards disease-specific education were assessed by tailor-made questionnaires in HCPs (n = 20) and parents of children with chronic liver disease or after LTx (n = 113). These were supplemented by focused interviews in n = 7 HCPs and n = 16 parents. Parents were more satisfied with current counseling than HCP. Language barriers and low parental educational background were perceived as obstacles by 43% of HCPs. The quality of parental knowledge was felt to have a strong influence on HCPs job satisfaction. The expectations towards the content of disease-specific education largely overlap but are not synonymous. HCP and parents agreed with regards to the importance of medication knowledge. Parents rated the importance about the meaning of laboratory values and diagnostic procedures significantly higher (3.50 vs. 2.85, p < 0.001 and 3.42 vs. 2.80, p < 0.001) than HCPs. Parents and HCPs would prefer a structured framework with sufficient staff resources for disease-specific counseling.

[I'm still here - Training for the Siblings of Chronically Ill or Handicapped Children]. / Ich bin auch noch da ­ Schulung für Geschwister von chronisch kranken oder behinderten Kindern.

BACKGROUND: Siblings of chronically ill or handicapped children are exposed to increased stress as a result of their special life situation. This can lead to psychological abnormalities. International studies show that programs for siblings can reduce this risk. In Germany, there is a lack of compact educational programs for siblings. Such an offer was tested with this workshop. In the one-day group training, coping strategies were developed and disease knowledge conveyed in order to reduce fears. The parents receive parallel training. METHODS: Altogether 19 sibling workshops were held. Before and six weeks after the training, standardized questionnaires were used to record sibling distress, mental health problems, and their health-related quality of life as well as family burden. T-tests for dependent samples were used to check the changes before and after training. RESULTS: Ninety-two children (average age 9.6 years; 54% female) and their parents took part in the training. From the parents' point of view, 32.5% of the children initially had an increased risk of psychological distress because of the family situation. After the training, this was reduced to 25.3%. The mental health problems were significantly reduced, as was the overall family burden. According to the self-assessment, the quality of life of the children improved. DISCUSSION: The families seem to benefit from the compact training. The workshop was applicable for families of children with different diseases and in different settings.

Assessing empowerment as multidimensional outcome of a patient education program for adolescents with chronic conditions: A latent difference score model.

OBJECTIVES: The current study aims to examine the construct of empowerment in the context of a transition education program. Patient education programs strive to empower adolescents with chronic conditions to take responsibility for their own health care to manage their transition from pediatric to adult medicine. Our study aimed to identify the core components of patient empowerment and examined whether its components are responsive to a patient education program. METHODS: Data was collected in two longitudinal studies involving N = 723 adolescents with chronic conditions. We used Latent Difference Score models (LDSm) of: 1) self-efficacy (GSE), 2) transition competence (TCS), and 3) patient activation (PAM) to quantify the latent variable of patient empowerment (PE). Additionally, the LDSm were extended to analyze the effects of group affiliation (intervention vs. control) and participants' age on empowerment. RESULTS: PE was identifiable by the three components. The intervention group developed significantly higher scores of PE compared to the control group. Age (13-21 years) did not moderate the relation between group affiliation and PE. CONCLUSIONS: We quantified PE successfully using a psychometric modeling of change. Patient empowerment is measureable and utilizable in the specific context of transition of adolescents with chronic conditions.

Evaluation of a generic patient education program in children with different chronic conditions.

For frequent pediatric chronic conditions, especially less common chronic conditions patient education programs are missing. A recently developed modular patient education approach (ModuS) combines disease-specific modules with generic psychosocial topics. ModuS was associated with increased disease-specific knowledge and improvements in families' well-being in children with asthma. In this study we tested if new developed ModuS programs for seven, mostly less common, chronic conditions show comparable program-associated effects. ModuS education programs were offered to the affected child and its parents. Disease-specific knowledge, children's health-related quality of life, life satisfaction and condition-specific burden were measured before, directly following and 6 weeks after participation in the program. The results were compared with families who received a ModuS asthma program. One hundred and sixty-eight children participated. Families were highly satisfied with the programs. Program participation was associated with increased families' knowledge, children`s self-reported health-related quality of life and reduced condition-specific burden. The results were comparable with the results of 230 families who participated in a ModuS asthma program. The ModuS approach allowed the development of patient education programs for children with a variety of chronic conditions. Therefore, ModuS closed an important healthcare gap.

Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM® 13 for Adolescents.

Measuring adolescent patients' engagement in their health care is especially important in preparing for chronically ill adolescents' transition into adult care. In this study, we aimed to create an adolescent version of the German language Patient Activation Measure (PAM-13-D) originally tested in in adults and psychometrically test the adapted measure (PAM® 13 for Adolescents). After linguistic and content-related adaptations, the PAM® 13 for Adolescents was tested in a large sample of adolescents with different chronic conditions (N = 586, mean age 17.5 years, SD = 1.4) in 40 health centers. Internal consistency was assessed with Cronbach's alpha and test-retest reliability with Pearson correlation. Convergent and divergent validity were calculated with Pearson correlations between the two IE-4 scales (internal and external Locus of Control) and the PAM® 13 for Adolescents. Known-group validity (type 1 diabetes vs. IBD, higher vs. lower education level) was checked by Mann-Whitney-U-tests. The PAM® 13 for Adolescents showed good test-retest reliability (rtt = .68), internal consistency (α = .79) and demonstrated good validity. The original structure of the PAM 13-D was replicated. Rasch analysis using the partial credit model was used to investigate the operating characteristics of the items. Rasch analysis indicated a sufficient fit of 12 of the 13 items. PAM® 13 for Adolescents is the first instrument measuring patient activation of adolescents with chronic conditions in a broad age range. Patient activation level can be used by clinicians to better plan and structure transition processes.

[How are Effects of Patient Education Programs Influenced by Psychosocial Risk Factors in Pediatrics?] / Wie beeinflussen psychosoziale Risiken den Erfolg von Patientenschulungen in der Pädiatrie?

BACKGROUND: Modular patient education programs are effective in children with chronic conditions and their families. Little is known about the influence of socioeconomic status (SES), migration background (MB) and children's mental-health problems on the programs' effects. OBJECTIVES: Do SES, MB or mental-health problems influence the success of education programs (disease-specific knowledge, children's health-related quality of life (HRQoL) and life satisfaction and parents' condition-specific burden)? MATERIALS AND METHODS: Children with different chronic conditions and their parents participated in modular patient education programs. Before and 6 weeks after the participation SES, MB, children's mental-health problems, parents' und children's disease-specific knowledge, children's HRQoL and life satisfaction and parents' condition-specific burden were assessed by standardized questionnaires. The influence on the programs' effects of SoS, MH and mental-health problems were examined with variance and correlation analyses. RESULTS: 398 children (mean age 10.2 yrs) and their parents participated. Irrespective of SoS, MH and mental-health problems the programs were associated with improved disease-specific knowledge, children's HRQoL and life satisfaction and parents' disease-specific burden. At follow-up SoS, MH and mental-health problems were associated with reduced knowledge, reduced children's' HRQoL and life satisfaction and increased parents' disease-specific burden. CONCLUSIONS: Disadvantaged families and children with mental-health problems benefit from education programs, but have an increased need of education due to special challenges.

Development and evaluation of a generic education program for chronic diseases in childhood.

OBJECTIVE: To support families with a chronically ill child, a modular curriculum and new healthcare structures (trainer education, quality management) for a group self-management program (ModuS) were developed. ModuS focuses on common psychosocial aspects of chronic conditions and comprises generic and disease-specific modules. A pilot test was conducted for asthma by comparing ModuS with an established asthma-specific education program (CAE). METHODS: Under routine care conditions, 491 children (6-17 years) with asthma and their parents participated in a multi-center prospective study (265 ModuS; 226 CAE). Families' program satisfaction, disease-specific knowledge, health-related quality of life (HRQoL), life satisfaction, and burden of disease were assessed before, directly following and six weeks after participation. RESULTS: The families were highly satisfied with the program. CAE and ModuS were associated with improved disease-specific knowledge, childrens HRQoL and life satisfaction and decreased the families' burden. This demonstrates comparability of existing care with the modular approach. CONCLUSION: The ModuS approach offers a structure for effective patient education programs aiming to improve self-management. As it focused on the similarities of chronic conditions, it provides the opportunity to establish education programs for a wide range of chronic childhood diseases. PRACTICE IMPLICATIONS: ModuS facilitates the development of new patient education programs.

Transition of Patients with Esophageal Atresia to Adult Care: Results of a Transition-Specific Education Program.

Aim of the Study A history of esophageal atresia (EA) may result in chronic morbidity. The transition of patients from pediatric to adult care has been recognized as an important factor to maintain disease-specific follow-up and prevent exacerbation of chronic disease. Patient education is recognized as a necessary part of transition programs for children with chronic diseases. Structured education programs for patients with EA have not yet been developed. We aimed to evaluate the efficacy of a transition-specific educational program in adolescents with a history of EA. Methods An ethical approval was obtained. Patients with a history of EA (age 14-21 years) and their parents were invited to participate in a 2-day transition-specific educational program. Overall, 29 patients and 25 parents were recruited out of whom 10/7 were allocated to the intervention group (program) and 19/18 to the control group (no program). Subjective satisfaction (ZUF-8) and expected effects of the program on the future course of the disease, transition-specific knowledge (standardized questionnaire addressing organizational and health-related aspects of transition), health-related quality of life (DISABKIDS), and confidence for self-management (Patient Activation Measure-13) were measured with appropriate psychological instruments. Nonparametric tests were used for statistical analysis. Main Results Subjects participating were highly satisfied with the program (patients 26/32 points, parents 25/32; ZUF-8). Overall, 90% of the patients and 67% of the parents anticipated a positive effect on the future course of the disease. Patient's transition-specific knowledge was low before the program (36% correct answers). It improved by 18% after the intervention (56% correct answers; p = 0.004). It did not change in the control group (54 vs. 52%; n.s.). Parent's transition-specific knowledge did not change after the intervention (66 vs. 67% correct answers; ns). In patients, there were no detectable effects on health-related quality of life (79.7 intervention vs. 81.5 controls; DISABKIDS general score) or self-management (44.4 intervention vs. 41.4 controls; PAM-13). Conclusions We identified a deficit of transition-specific knowledge in adolescents with a history of EA. These patients benefit from a transition-specific education program. Thus, the transition to adult care may be facilitated resulting in an improved long-term care of patients with EA.