[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.

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.

Differential effect of a patient-education transition intervention in adolescents with IBD vs. diabetes.

Patient education programs (PEPs) to improve disease management are part of standard and regular treatment in adolescents with diabetes. In Germany, youth with inflammatory bowel disease (IBD) receive individual counseling but not PEPs in group settings. Generic PEPs have been developed in order to improve transition from child-centered to adolescent health services. The aim of the study was to investigate the effects of a transition-oriented PEP on quality of life (QoL) and self-management in young patients with IBD (PEP naive), compared to patients with diabetes (familiar with PEPs). A 2-day transition workshop was oriented at improving psychosocial skills and addressed both generic as well as specific aspects of the condition. A controlled trial on the outcomes of a generic transition-oriented PEP was conducted in 14- to 20-year-old patients with IBD (n = 99) and diabetes (n = 153). Transition competence and QoL were assessed at baseline and 6-month follow-up. Results show that the intervention lead to a significant increase in QoL only in patients with IBD. The PEP significantly improved transition competence in both groups, however to a higher extent in subjects with IBD. CONCLUSION: Transition-oriented PEPs can have differential effects in different patient groups. However, this needs further longitudinal investigations. What is Known: • To date, evidence has accumulated concerning the effectiveness of patient education programs (PEPs) in pediatric health care for chronic conditions such as type 1 diabetes, asthma, atopic dermatitis, or obesity but is less documented in inflammatory bowel disease (IBD). In particular, PEPs in the transition period have not been investigated in youth with IBD. • The current study focuses on evaluating a PEP for transition preparation and management designed to be generically used across different chronic conditions since many aspects of managing chronic conditions share commonalities across conditions. The 2-day workshop included condition-specific modules adapted to the specific medical needs but was otherwise similar in quality and organization among different conditions. What is New: • The transition-oriented PEP was effective in enhancing self-management and transition management skills in both patients with IBD and diabetes; however, effects were higher in youth with IBD. A significant impact of the intervention on patients' QoL compared to the control group was only identified in youth with IBD. • We recommend that patients with IBD have access to PEP as a standard treatment as well as to a transition program during the course of illness.

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.

Experiences in Sensor-Augmented Pump Therapy in Families with two Children with Type 1 diabetes: A Qualitative Study.

BACKGROUND: Caring for a child with type 1 diabetes is a tremendous challenge for a family. The aim of the study was to explore the experiences of transition to sensor-augmented pump therapy (SAP) in families with 2 affected children and the internal and external conditions which potentially impede or facilitate the adjustment process. METHODS: 5 families (9 parents, 8 children and adolescents) who used the SAP technology for 6 months were interviewed to describe their experiences. The interviews were analysed using thematic content analysis. RESULTS: Qualitative analysis of the transcribed interviews revealed that the adaptation process to SAP consisted of several phases and differed among families. There were benefits as well as hassles of using SAP with regard to managing the diabetes, and psychosocial issues: school and peer relations, as well as family relations. While parents clearly regarded the improved metabolic control and hypoglycaemic safety as the most important benefits of SAP, the hassles reported as most important covered a wide range, from technical problems of the system to family conflicts. On the whole, families rated the experience of using SAP as a positive one, with most recommending SAP to other families as long as they were willing to come to terms with the technology and commit to the work and time involved. CONCLUSION: Sensor-augmented pump therapy can be extremely beneficial and a resource for families who care for more than one child with diabetes. During the adaptation process there is a great need of education and frequent follow-up e. g., by telemedical support.

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme.

The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group (n = 18) or individual (n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress-management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition-specific components. The workshop was designed as a compact 2-day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self-management and empowerment increase the preparedness for transition.

The Youth Health Care measure-satisfaction, utilization, and needs (YHC-SUN)-development of a self-report version of the Child Health Care (CHC-SUN) proxy-measure.

BACKGROUND: The transition of health care of youth (age 15-25) with chronic conditions requires the assessment of adolescents' access, use and needs as well as satisfaction with the health services they use. The aim of this study was to test the adolescent adaptation of the parent version "Child Health Care Questionnaire - Satisfaction, Utilization and Needs" (CHC-SUN) concerning its psychometric performance and appropriateness for adolescents and young adults. METHODS: The Youth Health Care Measure (YHC-SUN) was designed to allow self-report of youth and it was pilot-tested in a small sample using cognitive debriefing. A cross-sectional survey in a sample of youth with chronic conditions in the transition period was carried out. RESULTS: One hundred eighty-two ambulatory care patients with three conditions participated in the survey. The subscales of the section on satisfaction with care showed excellent internal consistencies, uni-dimensionality and fit to the model of the parent version. There was no impact of gender and education on satisfaction with care. Associations with age, diagnosis, experiences with care and health literacy affecting the satisfaction with care indicate discriminatory and content validity. CONCLUSIONS: Potential applications of the new instrument are evaluations of health care services for adolescents and young adults using self-reports and evaluations of transition programs and interventions such as patient education.

[Do Attachment Styles of Mentally Ill Parents Impact on the Health-related Quality of Life of their Children?]. / Beeinflusst der elterliche Bindungsstil die gesundheitsbezogene Lebensqualität der Kinder psychisch kranker Eltern?

Do Attachment Styles of Mentally Ill Parents Impact on the Health-related Quality of Life of their Children? Parents with a mental disorder often display a problematic attachment style which may impact on their children's health related quality of life (HrQoL). The current study cross-sectionally examines attachment styles (BEPE) in mentally ill parents with underage children (n = 62) and the effect of attachment on their children's HrQoL (KINDL-R). Results show that secure attachment is less represented in parents with a mental health condition than in a healthy reference group. Within the clinical sample, children of mentally ill parents with a secure attachment style exhibit a higher HrQoL than children of mentally ill parents with ambivalent or avoidant attachment styles. These findings indicate not only that problematic attachment styles frequently occur in families with a mentally ill parent, but also suggest that this negatively affects the children's HrQoL. Appropriate interventions should include attachment oriented concepts.

A multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adults.

OBJECTIVE: The aim of the study was to test the effects of a generic transition-oriented patient education program on adolescents' health service participation and quality of life (QoL). METHODS: We conducted a controlled trial comparing participants of 29 transition workshops with treatment as usual in 274 adolescents (16.8 mean age, SD=1.76) diagnosed with type I diabetes (DM), cystic fibrosis (CF) or inflammatory bowel disease (IBD). A two-day transition workshop was carried out at 12 sites in Germany, focusing in standardized modules on adjustment to adult care settings, organization of future disease management, career choices and partnership. Study outcomes were health-related transition competence, self-efficacy, satisfaction with care, patient activation and QoL. Measures were assessed at baseline and six-month follow-up. RESULTS: Repeated-measurement covariance analysis using age as a covariate showed that the transition workshop significantly affected transition competence, self-efficacy and satisfaction with school care six months post intervention. The intervention did not significantly affect patient activation and QoL. However, post-hoc analysis suggested different effects across conditions. CONCLUSION: The program has a positive effect on the competence of adolescents in the transition phase. PRACTICE IMPLICATIONS: The study demonstrates that an intervention can be effective in preparing adolescents with chronic conditions for transitions.