Using person reported outcomes: Psychometric properties of the German diabetes treatment satisfaction questionnaire (DTSQ) for teens and parents.

Aims: To examine psychometric properties including the factor structure of the German versions of the Diabetes Treatment Satisfaction Questionnaire for teens and parents (DTSQ-T/-P). Methods: Linguistically validated questionnaires were completed by 363 adolescents with type 1 diabetes and 655 parent-caregivers in a multicenter study. Confirmatory factor analysis (CFA), reliability, and correlations were examined. Results: CFA confirmed the 2-factor model of treatment satisfaction (TS) & perceived diabetes control (PDC) with an adjustment of removing the "medical support" item from the TS and examining it as a single item in this study. Cronbach's α of TS for DTSQ-T/-P was 0.82 & 0.83, respectively, and α of the two-item PDC factor was 0.70 & 0.60, respectively. The DTSQ scale scores positively correlated with time in range and inversely correlated with HbA1c. Scale scores of DTSQ-T/-P showed significantly positive relations to the KIDSCREEN-10 Index and negative associations with the Problem Areas in Diabetes (PAID). The TS of the parents was correlated with depressive symptoms measured in the Patient Health Questionnaire-9. Conclusions: The DTSQ-T/-P produced psychometrically sound scores in measuring diabetes treatment satisfaction in German teens with type 1 diabetes and their parents. German DTSQ versions for teens and parents are recommended in research and clinical practice.

Health-related quality of life among adolescents with type 1 diabetes since the second wave of the COVID-19 pandemic in Germany.

OBJECTIVE: The COVID-19 pandemic had an impact on everyday life and in general, reduced the health-related quality of life (HRQoL) of adolescents. In this study, we assess the HRQoL of adolescents with type 1 diabetes (T1D) in Germany since the second wave of the COVID-19 pandemic by using self-report and parent-proxy reports, to identify risk factors, to compare to peers and to examine the agreement of HRQoL between parents and their children. METHODS: A total of 445 adolescents (12-18 years) and 413 parents participated in an anonymous cross-sectional survey conducted at three German diabetes centres from January 2021 to June 2022. Inclusion criteria were diabetes duration ≥1 year and German-speaking. Teen HRQoL was assessed by using self-report and parent-proxy report versions of the KIDSCREEN-10 index. RESULTS: The majority of adolescents reported average (75.5%) HRQoL. Approximately 11.3% of teens reported high and 13.2% low HRQoL. Teen's female gender, older age, higher diabetes burden and parental depression symptoms contributed to lower self-reported HRQoL among teens. For parent-proxy reports, increasing diabetes burdens, parental depression symptoms, non-migrant status, high education and ketoacidosis contributed to lower scores on teen HRQoL. The mean scores of the KIDSCREEN-10 index for adolescents did not differ from the German norm. In comparison to healthy peers during the first wave of the pandemic, adolescents in the current study reported higher HRQoL. The overall teen-parent agreement was fair although parents reported significantly lower teen HRQoL than adolescents did. CONCLUSIONS: HRQoL of most adolescents with T1D during the COVID-19 pandemic was average with parents reporting significantly lower scores. Self-reported and parent-proxy-reported HRQoL and the level of agreement due to different perspectives can provide important information for clinical care and intervention planning.

Psychometric properties of the German teen and parent versions of the Problem Areas in Diabetes Scale (PAID).

The negative impact of psychosocial burden in connection with the treatment of Type 1 diabetes (T1D) indicates the need for regular screening of diabetes distress in adolescents with T1D and their parents. Psychometric properties of the German versions of Problem Areas in Diabetes scale-Teen (PAID-T) and Parent (P-PAID-T) are examined in order to provide a clinical screening tool. Linguistically translated questionnaires were used in a multicenter study with 459 families. Confirmatory factor analysis, validity, and reliability were examined. Teens (42.8% female) had a mean age of 14.7 years. Most parent-caregivers were mothers (74.4%) and were born in Germany (83.1%). Results corroborate the three-factor model for the PAID-T with acceptable model fit, and convergent and discriminant validity was observed. The four-factor model for parents was also supported but had inadequate discriminant validity in this study. Teen and parent scores showed excellent Cronbach's α = 0.91 and 0.93, respectively. The PAID-T and P-PAID-T scores were positively correlated with HbA1c (rs = .343 and .252, respectively, p < .001) and negatively correlated with treatment satisfaction (Diabetes Treatment Satisfaction Questionnaire) and KIDSCREEN-10 index (teens: rs = -.545 and -.575; parents: rs = -.563 and -.489, respectively, all p < .001). The P-PAID-T correlated positively with depressive symptoms measured in Patient Health Questionnaire -9 (rs = .537, p < .001). The German versions of PAID-T and P-PAID-T produced scores that demonstrated good reliability and validity. Like the original English versions, the German versions are useful to detect diabetes-specific distress in families and to tailor interventions for affected teenagers and their parents. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Understanding Daily, Emotional, and Physical Burdens and Needs of Parents Caring for Children with Type 1 Diabetes.

Aims: To investigate (1) daily, emotional, and physical caregiving burdens in parents of children with type 1 diabetes, (2) the sociodemographic and clinical predictors of three burdens, and (3) support measures that parents wish to receive. Methods: The study was a multicenter cross-sectional survey conducted in nine German pediatric diabetes centers. A questionnaire assessing three types of burdens and wishes for support was distributed to parents with a child with type 1 diabetes visiting one of the pediatric centers for a routine check-up. Results: Data from 1,107 parents (83% mothers) were analyzed. Parents reported significantly higher emotional burdens compared to daily and physical burdens (p < 0.0001). Mothers felt more burdened than fathers did. Parents of younger children reported higher daily and physical burdens compared to the parents of older children, and similarly, parents of technology users reported higher daily and physical burdens compared to the parents of nontechnology users. However, emotional burdens did not differ in both comparisons. Other demographic factors (i.e., parent's age, migration status, and single-parent family status) predicted high levels of daily or physical burdens, but only HbA1c level and the parent's gender (mother) predicted a high emotional burden. Independent of the level of burden, 78% of parents wanted additional diabetes training. Conclusion: Despite parents reporting high emotional burdens in connection with diabetes care, HbA1c and the gender of the reporting parent were the only risk factors. As the child gets older, parents' daily and physical distress decrease but not the emotional burden. Diabetes training including regularly offered booster sessions as well as low-threshold interventions for mental health issues and practical self-care skills is recommended to provide continuous support for parents.

Long-term Occupational Consequences for Families of Children With Type 1 Diabetes: The Mothers Take the Burden.

OBJECTIVE: To investigate the occupational and financial consequences for parents following the onset of type 1 diabetes in their child. RESEARCH DESIGN AND METHODS: A questionnaire assessing occupational and financial situations before and in the first year after the onset of diabetes was distributed to all families with a child ≤14 years of age at diagnosis with a diabetes duration of at least 12 months in nine German pediatric diabetes centers. RESULTS: Data of 1,144 children (mean age at diagnosis 6.7 [3.6] years; 46.5% female) and their families were obtained. Mothers' occupational status reflected in paid working hours was significantly reduced in the first year after their child's diabetes diagnosis (P < 0.001). Overall, 15.1% of mothers stopped working, and 11.5% reduced working hours. Mothers of preschool children were particularly affected. Fathers' working status hardly changed (P = 0.75). Nearly half of the families (46.4%) reported moderate to severe financial losses. Compared with an earlier similar study in 2003, significant negative occupational consequences for mothers and financial burden on families remained unchanged in 2018 (P = 0.59 and 0.31, respectively). CONCLUSIONS: Mothers of young children with newly diagnosed diabetes experienced negative consequences in their occupational situation. This inequality for mothers can have long-term negative consequences for their mental health and future economic situation. There is an urgent need for action to reduce the burden on families and to provide professional, social, and regulatory support, especially for mothers of young children with diabetes.

[Young People with Type 1 Diabetes: Prevalence of Disturbed Eating Behaviour and Psychosocial Care]. / Gestörtes Essverhalten und psychosoziale Versorgungssituation junger Menschen mit Typ 1 Diabetes.

INTRODUCTION: Disturbed eating behaviour or clinically relevant eating disorders associated with type 1 diabetes have serious consequences for the metabolism and long-term health prognosis of those affected. Early diagnosis and qualified therapeutic interventions may help to prevent microvascular complications. In this study, the prevalence of eating disorders and the status of psychosocial care are assessed for a group of young people with type 1 diabetes, participating in a 4 days diabetes camp. MATERIAL AND METHODS: During a diabetes camp for young people (16-29 years) in Germany, the participants completed a questionnaire on their current diabetes therapy, their diabetes-specific distress (PAID-5), and their psychosocial outpatient care. Symptoms of disturbed eating were assessed by a diabetes-specific screening questionnaire, the Diabetes Eating Problem Survey-Revised (DEPS-R). RESULTS: Overall 308 young people with type 1 diabetes (age 21.4±3.4 years, 73% female, diabetes duration 10.2±5.9 years, 74% in adult diabetes out-patient care) answered the questionnaire. In 28.2% of respondents, the cut-off of DEPS-R was exceeded (17% of men, 32% of women). Only 7% of the participants with symptoms of disturbed eating behaviour received appropriate psychological care. Multiple regress analysis indicates that HbA1c, BMI, diabetes-specific distress, age, diabetes duration, and sex account for the level of disturbed eating behaviour. DISCUSSION: Among the participants of a diabetes camp for young people, more than a quarter presented symptoms of disturbed eating behaviour. Overall, young women were affected more frequently; further risk factors were higher BMI, elevated HbA1c and diabetes-distress. Only a very small proportion of young adults with type 1 diabetes and disturbed eating behaviour received psychological support. CONCLUSION: Diabetes-specific screening instruments and/or specific screening questions should be used in outpatient routine care for young adults in a standardized manner, especially among young women, and the results should be discussed with the patients to initiate further treatment.

[Prevalence of Disturbed Eating Behavior in Children and Adolescents with Type 1 Diabetes: Assessment and Comparison to Healthy Peers--Results of a Multicenter Questionnaire-based Study]. / Prävalenz gestörten Essverhaltens bei Typ 1 Diabetes im Kindes- und Jugendalter: Erfassungsmöglichkeiten und Vergleich mit gesunden Gleichaltrigen--Ergebnisse einer multizentrischen Fragebogenstudie.

INTRODUCTION: Published data on prevalence of disturbed eating behavior in youth with type 1 diabetes are heterogeneous. This study assesses the prevalence rate of disturbed eating behavior in a representative German sample of children and adolescents with type 1 diabetes. The prevalence rate is compared to the one published for a national sample of healthy peers. Furthermore prospects as well as limits of a generic screening tool used to identify disturbed eating behavior are compared to those of a diabetes specific screening tool. MATERIAL AND METHODS: A total of 246 children and adolescents (age: 11-19 years) with type 1 diabetes, from 6 pediatric diabetes centers in Germany, completed the generic SCOFF questionnaire and the diabetes specific Diabetes Eating Problem Survey-Revised (DEPS-R) to assess their eating behavior. Prevalence data were compared to representative data from a nationwide survey in Germany (KiGGS-study). RESULTS: A total of 16.3% of the children and adolescents with type 1 diabetes scored above the SCOFF cut-off (≥ 2) (24.2% of the girls and 8.9% of the boys). The percentages in the healthy controls were 28.9% for girls and 15.2% for boys. Compared to this the prevalence of disturbed eating behavior was lower in the diabetes group (p=0.017 and p<0.001). According to the diabetes specific DEPS-R 11.2% of the boys and 13.2% of the girls with type 1 diabetes practiced insulin-purging. The association between SCOFF-scores and the items referring to insulin-purging in DEPS-R, was stronger for girls than for boys (r=0.437 vs. r=0.144). Among the young people with type 1 diabetes DEPS-R-scores showed stronger associations to the quality of metabolic control (HbA1c) than the SCOFF (boys: r=0.357 vs. r=0.217 and girls: r=0.368 vs. r=0.131). DISCUSSION: Children and adolescents with type 1 diabetes are not more frequently affected by disturbed eating behavior than their healthy peers. Particularly boys with type 1 diabetes practicing insulin-purging, are not reliably detected by a generic screening tool. CONCLUSION: As part of long-term care a diabetes specific screening tool should be used to identify adolescents with type 1 diabetes and disturbed eating behavior more reliably.

Reducing stress and supporting positive relations in families of young children with type 1 diabetes: a randomized controlled study for evaluating the effects of the DELFIN parenting program.

BACKGROUND: To assess initial efficacy and feasibility of a structured behavioural group training (DELFIN) for parents of children with diabetes type 1, in order to reduce parenting stress and to improve parenting skills. METHODS: A randomized controlled study was conducted between July 2008 and September 2010, at a children's hospital in Hannover with parents of children with type 1 diabetes (2-10 yrs) (intervention group n = 37; control group n = 28). Parenting skills, parents' psychological burden, children's behavioural difficulties and quality of metabolic control were assessed before, 3 months after and 12 months after participating in the training program. RESULTS: In the intervention group parenting behaviour in conflict situations improved significantly after 3 months (Z = -3.28; p ≤ 0.001). It remained stable over 12 months (Z = -2.94; p ≤ 0.01). Depression and anxiety scores of parents decreased (Z = -1.93; p ≤ .05; Z = -2.02; p ≤ .05). Even though the outcome in the intervention group was more positive, the differences between both study arms failed to reach statistical significance. Unexpectedly parenting behaviour in the control group improved also (Z = -2.45; p ≤ .05). Anxiety as well as stress scores decreased in this group (Z = -2.02; p ≤ .05 and Z = -2.11; p ≤ .05). In both groups the initial metabolic control was good and without significant differences (A1c 7.2 ± 0.8% vs. 7.1 ± 0.4%; p > 0.5). It remained stable in the DELFIN group (A1c 7.1 ± 0.8%; p > 0.5), but it increased slightly in controls (A1c 7.3 ± 0.5%; Z = -2.79; p = .005). CONCLUSIONS: This study has brought first evidence for the efficacy and feasibility of the program. A multicentre study with a larger sample is necessary to confirm these first results.

A pediatric diabetes toolbox for creating centres of reference.

INTRODUCTION: ISPAD guidelines recommend age appropriate diabetes education concepts for young patients and their families as well as tools for nutritional management, psychosocial assessment, and psychological advice but their implementation in Europe is presently unknown. METHODS: On the basis of a structured survey among the European SWEET members information on established tools and programs in national languages were analyzed using an extensive literature and desk search. These were differentiated according to five age-groups and five target groups (young people with diabetes, parents, and other close relations, carers in school and nursery, and healthcare professionals). RESULTS: Responses and original tools were received from 11 SWEET countries reflecting the European status in 2011. More or less structured information for parents, close relations, and carers in school or nursery are available in all 11 participating countries. However, only two countries followed the recommendations of having published a structured, curriculum lead, and evaluated program for different age-groups and carers. One of these was evaluated nationwide and funded by the respective National Health Care System after accreditation. In addition a huge variety of creative tools, e.g., booklets, leaflets, games, videos, and material for educating children of different age-groups and their parents are available - but most of them are not linked to a structured education program. CONCLUSIONS: Harmonizing and integrating these materials into quality assured structured holistic national education programs will be an important future task for the ongoing SWEET project. A comprehensive European diabetes educational toolbox is aimed to be published and continuously updated on the SWEET website.

Does the occurrence of adverse life events in patients with breast cancer lead to a change in illness behaviour?

GOALS OF WORK: It was examined whether life-changing events may lead to changes of illness behaviour in women prior to breast cancer diagnosis. We considered the delay in three different aspects: date of breast self-examination, routine visits at the doctor, and finally changes in the length of time intervals between the detection of suspicious breast symptoms and the subsequent verification of diagnoses. MATERIALS AND METHODS: The data of 240 patients (age <70 years) with a first manifestation of breast cancer were used for analysis. Life events were assessed by means of a semi-structured interview as proposed by Brown and Harris and classified according to a system proposed by Brugha et al., the List of Threatening Experiences (LTE). All analyses were performed by means of Cox's proportional hazard regression. MAIN RESULTS: Women with stressful events went to the doctor earlier than those without events. The date of breast self-examination remained unchanged after the occurrence of events. Women who had discovered suspicious breast symptoms delayed the subsequent visit at the doctor if they had experienced two serious events within this period. The occurrence of life events may have effects on illness behaviour, but into different directions. CONCLUSION: In the majority of cases, event-related delays were shorter than those reported to aggravate the prognosis of breast cancer.

Prerequisites for age-appropriate education in type 1 diabetes: a model programme for paediatric diabetes education in Germany.

Continuous diabetes education for children, adolescents and their parents are widely accepted as an integral part of every type 1 diabetes therapy. Especially in paediatric diabetes care age-appropriate, demand-oriented and individualized practical information and skills training are mandatory for achieving good metabolic control and psychosocial well-being. A paediatric multidisciplinary diabetes team experienced in an intensified insulin therapy with a differential substitution of prandial and basal insulin needs (MDI or CSII) and in child psychology is required to initiate and maintain lifelong diabetes self-management. In Germany an education programme for children aged 6-12 years and another programme for adolescents and young adults have previously been evaluated in multicenter studies. Programmes were considered with respect to applicability, acceptance by target groups and efficacy (knowledge, competence, quality of life and glycaemic control). Furthermore, a programme specifically designed for parents of children affected was evaluated. Contents, modular structures, developmental psychological background and didactic concepts of all above mentioned programmes are presented in detail. Apart from teaching insulin therapy according to current guidelines special emphasis is laid on translating this knowledge into everyday self-management behaviour. In addition, emotional coping with the chronic disease and its psychosocial consequences is supported. In the context of the Disease-Management-Program for Type 1 Diabetes in Germany these programmes for young people were certified and reimbursed nationwide by health insurances.

Ways to obtain a breast cancer diagnosis, consistency of information, patient satisfaction, and the presence of relatives.

GOALS OF WORK: What physicians told breast cancer patients about their diagnosis, who informed them, and how this information was conveyed were examined in this study. Finally, the relatives' role in this communication process was considered. MATERIALS AND METHODS: Women with primary breast cancer (N = 222) below the age of 70 were interviewed after surgery and after they were informed about their diagnosis. MAIN RESULTS: One hundred twenty-one women consulted their primary gynecologist first, then they were referred to a radiologist, and finally to the secondary care gynecologist. Forty-seven women omitted the radiologist and only five went directly to the hospital for treatment. In most cases (N = 199), the general practitioner was not involved. Receiving inconsistent information was associated with patient dissatisfaction. This also applies to women who received their diagnosis on the phone. Women awaiting a worse diagnosis were more likely to be accompanied by another person. CONCLUSIONS: Future studies should focus on the possible involvement of family doctors and relatives during the diagnostic process. Giving inconsistent information should be avoided.