Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.

BACKGROUND: During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples' needs, few validated instruments exist pinpointing adolescents' and emerging adults' experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes. The specific aim was, therefore, to describe the development and psychometric evaluation of TEXP-Q in emerging adults with Type 1 Diabetes. METHODS: Initial development of the TEXP-Q was inspired by existing research. Items were formulated in accordance with consensus recommendations for developing patient-reported measures, and extra consideration was taken to ensure person-centredness. Psychometric evaluation comprised two phases: In phase I, data from cognitive interviews, content validity indexing, and judgement of an expert panel provided information on face and content validity. In phase II, data from a cross-sectional study conducted at eight adult diabetes outpatient clinics in Sweden (n = 163) allowed for explorative factor analysis (EFA), as well as calculation of content validity, reliability and responsiveness. RESULTS: Combining results from cognitive interviews, content validity index values and expert panel judgement, a test version of TEXP-Q was developed, the content and face validity of which were considered good. This version consisted of 17 items answered on a five-point Likert scale, and three open-ended questions answered in free text. During EFA, four items were removed, and a three-factor solution was recognised as most adequate, accounting for 60% cumulative variance and one single cross-loading. After EFA, the instrument comprised 13 questions, divided into three latent factors. Cronbach's alpha for the complete instrument was 0.866, which indicates good internal consistency. Crohnbach's alpha approximated to 0.8 for all factors respectively. CONCLUSION: TEXP-Q is a newly developed, person-centred instrument which has proven to be both valid and reliable when applied to youths with T1D. The questionnaire fills a need for instruments focusing on emerging adults' experiences of preparation for transition and transfer.

Carbohydrate Counting, Empowerment and Glycemic Outcomes in Adolescents and Young Adults with Long Duration of Type 1 Diabetes.

The complex treatment for diabetes type 1 (T1D) includes insulin dosing for every meal, which requires education and experience to achieve optimal outcomes. Advanced carbohydrate counting (ACC) is the recommended method. We studied ACC as part of a standard treatment with the aim to explore its associations with glycemic control and empowerment in adolescents and young adults. We used national registry data on glycemic outcomes, a study-specific questionnaire regarding the use of ACC and the Gothenburg Young Persons Empowerment Scale (GYPES) to measure empowerment. A total of 111 participants (10-28 years of age, diabetes duration >9 years, mean HbA1c of 55.4 mmol/mol) answered the questionnaire. We found that most participants (79.3%) who learn ACC, at onset or later, continue to use the method. A higher level of empowerment was associated with lower HbA1c (p = 0.021), making patient empowerment an important factor in achieving optimal glycemic outcomes. No associations were found between ACC and empowerment or glycemic outcomes. A mixed strategy, only using ACC sometimes when insulin dosing for meals, was associated with the lowest empowerment score and highest HbA1c and should warrant extra education and support from the diabetes team to reinforce a dosing strategy.

Person-specific evidence has the ability to mobilize relational capacity: A four-step grounded theory developed in people with long-term health conditions.

Person-specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self-determination method with people with various long-term health conditions. It explains the mechanisms of mobilizing relational capacity by including person-specific evidence in shared decision-making. Person-specific self-insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self-management challenges. This step paved the way for sharing these insights and challenges in a relationship with a supportive health professional, who could then rely on person-specific evidence instead of assumptions or a narrow disease perspective for shared decision-making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person-specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self-insights in daily life with other people, decreasing loneliness they experienced in self-management. Relational capacity, the core of the theory, is mobilized in both people with long-term health conditions and healthcare professionals. Further research on person-specific evidence and relational capacity in healthcare is recommended.

Read and accepted? Scoping the cognitive accessibility of privacy policies of health apps and websites in three European countries.

Objective: Trust and accessibility are vital to adoption of health and wellness apps. This research scoped three elements of cognitive accessibility of health app privacy policies: availability, ease of navigation, and readability. Methods: For this cross-sectional study, quantitative data collected in the Netherlands, Sweden, and the United Kingdom included: whether privacy information was in a country's official language (availability); number of distracting visual elements (ease of navigation); word count and Common European Framework of Reference (CEFR) reading level (readability). Health app privacy policies were compared to policies from a purposively selected sample of websites, and to benchmarks, including CEFR reading level B1. Results: Health app privacy policies were less often available in countries' official languages compared to sampled websites (Chi-Square [1, 180] = 57.470, p < 0.001) but contained fewer distracting visual elements. More UK privacy policies were in the country's official language, whereas Swedish privacy policies contained fewest words and fewest potentially distracting design elements. Only one privacy policy met the CEFR reading level benchmark. Conclusions: Lack of privacy information in non-Anglophone app-users' native languages and high reading levels may be major barriers to cognitive accessibility. Web and app developers should consider recommendations arising from this study, to stimulate trust in and adoption of health and wellness apps.

Treatment with pollen allergen immunotherapy improves health-related quality of life in children and adolescents: a three-year follow-up-study.

BACKGROUND: The immunological effect of allergen-specific immunotherapy is well documented, but few studies have examined the long-term effects of pollen subcutaneous immunotherapy (SCIT) on health-related quality of life (HRQoL) in children and adolescents. Therefore, the aims of this study were to evaluate the effect of pollen SCIT on HRQoL and to assess the association between HRQoL and symptoms among children and adolescents with allergic rhinoconjunctivitis in a 3-year follow-up. METHODS: A prospective cohort study was conducted at a paediatric clinic in Sweden, including 158 children (5-16 years) on SCIT (birch and/or grass). Health-related quality of life, measured with DISABKIDS, symptom scores and allergen-specific IgE and IgG4 antibodies (blood test), were assessed at start, and after 1, 2 and 3 years of treatment. ANOVA and t-test were used to analyse differences over time, between groups and linear mixed model for the association between HRQoL and influencing factors. RESULTS: After 1 year of pollen SCIT, HRQoL improved from 79.5 to 85.1 (p < 0.001), and the improvements were maintained (mean 1 years, 84.8, 3 years 87.2). Symptom scores decreased after 1 year, mean 19.9 to 11.5 (p < 0.001) and were maintained for year two (11.9) and year three (10.3). The proportion of children with severe or very severe symptoms decreased from 35.6% to 4.5% after 1 year of SCIT. Health-related quality of life was associated with symptoms at all measured timepoints (p = 0.001-0.031); higher symptom scores were associated with lower perceived HRQoL. Allergen-specific IgE antibodies decreased, birch from 151.0 to 76.8 kU/L (p < 0.001), and IgG4 antibodies increased, birch from 2.2 to 17.6 g/L (p < 0.001), grass from 0.5 to 14.3 g/L (p < 0.001), during the study period. CONCLUSION: After 1 year of pollen SCIT, HRQoL improved, and symptoms decreased; these changes were maintained during the study period. The proportion of severe and very severe symptoms significantly decreased.

Bridging gaps in the design and implementation of socially assistive technologies for dementia care: the role of occupational therapy.

Dementia is a global health challenge, and people living with dementia (PLWD) are especially susceptible to reduced engagement in meaningful occupations, including social participation. In the past few decades, socially assistive technologies continue to be developed amidst a rapidly evolving technological landscape to support the social health of PLWD and their caregivers. Examples include social robots, virtual reality, smart home technology, and various digital technologies, such as mobile applications for tablets and smartphones. Despite an increasing body of research and interest in this field, several gaps relating to the design and implementation process of socially assistive technologies continue to undermine their relevance for PLWD in daily life. In this paper, some of these gaps are highlighted and the role of occupational therapy in the design and implementation of socially assistive technology is presented. In the design process, occupational therapists are uniquely skilled to advise and advocate for the tailoring and personalisation of technology to address the occupational needs of PLWD. In the implementation of socially assistive technologies, occupational therapists are skilled to educate, train, and conduct ongoing evaluations with PLWD and their caregivers, to incorporate socially assistive technologies into their routine and daily lives. We recommend that occupational therapists should continue to be acquainted with such technologies through continuous professional development and educational curricula. Moreover, we highlight the necessary collaboration between occupational therapists, technology developers, and researchers to enhance the process of designing and implementing socially assistive technology, so that their relevance for PLWD and their caregivers can be maximised.Implications for rehabilitationDevelopers and designers of socially assistive technology should consider the disease trajectory of different types of dementia, as well as the different needs, abilities, preferences, occupations and routines of people living with dementia (PLWD) and/or their caregivers.Collaborations between technology developers, researchers, and occupational therapists should take place iteratively throughout the process of designing and implementing socially assistive technology to maximise their relevance and applicability for people living with dementia and their caregivers.To continue enhancing the current role of occupational therapy in socially assistive technology provision, occupational therapists should keep up to date with socially assistive technology that are being developed to support the social health of PLWD.

Social Citizenship Through Out-of-Home Participation Among Older Adults With and Without Dementia.

There is limited empirical knowledge about how older adults living with dementia enact their social citizenship through out-of-home participation. This study aimed: (a) to investigate out-of-home participation among older adults with and without dementia in four countries and (b) to compare aspects of stability or change in out-of-home participation. Using a cross-sectional design, older adults with mild-to-moderate dementia and without dementia, aged 55 years and over, were interviewed using the Participation in ACTivities and Places OUTside the Home questionnaire in Canada (n = 58), Sweden (n = 69), Switzerland (n = 70), and the United Kingdom (n = 128). Data were analyzed using descriptive statistics and a two-way analysis of variance. After adjustment for age, diagnosis of dementia and country of residence had significant effects on total out-of-home participation (p < .01). The results contribute to policies and development of programs to facilitate social citizenship by targeting specific activities and places.

Out-of-home participation among people living with dementia: A study in four countries.

Social participation in out-of-home activities is important for people living with dementia, yet little is known about such participation. The aim of this study was to explore and compare out-of-home participation among people living with dementia in four countries by assessing different types of places of participation visited or no longer visited. A cross-sectional design was used to gather self-reported experiences concerning out-of-home participation among people with mild stage dementia living in Canada (n = 29), Sweden (n = 35), Switzerland (n = 35) and the UK (n = 64). Interviews were conducted using the Participation in ACTivities and places OUTside the Home for older adults (ACT-OUT) instrument. Participants still visited 16 (Median) places out of a possible total of 24, and they had abandoned 5 (Median) places. Neighbourhood was the place most participants still visited, whereas 50% of them had stopped going to a Sports facility, with no significant differences between country samples regarding how many participants had abandoned that place (Fisher's exact test, p > 0.01). There were significant differences between country samples in the frequency of present participation and abandonment of the Hospital, Dentist's office, Cemetery, Garden, and Forest (Fisher's exact test, all p < 0.01). Although the participants still visited a variety of places, they had stopped going to places previously visited, which indicates reductions in participation, posing an inherent risk to well-being. The similarities and differences across samples from the four countries suggest that healthcare services and access to public transport may contribute to the complex interactional process of out-of-home participation for people living with dementia. The findings highlight the need for initiatives targeting specific types of places to support continued participation in society, especially places at a higher risk of abandonment such as places for recreation and physical activity.

Familiarity and participation outside home for persons living with dementia.

Familiarity is important for persons living with dementia who participate outside home. When familiarity is challenged, such participation may be difficult. This ethnographic study clarifies how familiarity is experienced by persons with dementia in performing activities and visiting places, and how familiarity contributes to maintaining participation outside home. Nine participants were interviewed in their home and while visiting familiar places. Data were content analysed using a constant comparative method. The findings suggest that persons with dementia experience familiarity as continuous and whole, through occurrences that support personal territories. Landmarks and objects enhance the experience of familiarity. Familiarity that is continuously challenged may render participation outside home fragile.

Adherence to Vitamin Supplementation Recommendations in Youth Who Have Undergone Bariatric Surgery as Teenagers: a Mixed Methods Study.

PURPOSE: Adherence to vitamin supplementation recommendations after bariatric surgery is generally poor, which is associated with nutritional deficiencies. Patients' own perspectives and reasons for poor adherence to vitamin supplementation recommendations have not yet been studied in depth. The purpose of this study was first to measure the accuracy of self-reported adherence to supplementation recommendations by using objective measures of vitamin D levels in blood and thereafter to explore perceptions of barriers and facilitators to participants' adherence to supplementation recommendations. MATERIAL AND METHOD: Participants were recruited from a prospective study investigating the outcome of bariatric surgery in adolescents with severe obesity. Mixed methods were used, including a quantitative part where vitamin D levels were analysed through 25(OH)D levels in blood and/or a questionnaire on adherence to supplementation programmes 5 years after surgery (n = 40) plus a qualitative part with semi-structured interviews (n = 20). RESULTS: We found a convergence between self-reported adherence to vitamin supplementation and vitamin D 25(OH)D levels in blood indicating honestly in self-reported responses. The qualitative evaluations resulted in the categories awareness and personal capability and external factors. In the analysis, an overall theme emerged; capacity is crucial for adherence in youth who have undergone bariatric surgery. CONCLUSION: Bariatric surgery is a comprehensive procedure that requires lifelong treatment afterwards. There is coherence between what adolescents actually do and what they say they do. Capacity is crucial for adherence and social support has been shown to be important.

Social Participation in Relation to Technology Use and Social Deprivation: A Mixed Methods Study Among Older People with and without Dementia.

Social participation is a modifiable determinant for health and wellbeing among older people; however, social participation is increasingly dependent on technology use. This study investigated social participation in relation to Everyday Technology use and social deprivation of the living environment, among older people with and without dementia in the United Kingdom. Sixty-four people with dementia and sixty-four people without dementia were interviewed using standardized questionnaires: The Participation in ACTivities and Places OUTside Home Questionnaire and Everyday Technology Use Questionnaire. A mixed methods approach integrated statistical analyses and content analysis of free-text responses, through data visualizations. Small, statistically significant associations were found between social participation and Everyday Technology use outside home, for participants with dementia (Rs = 0.247; p = 0.049) and without dementia (Rs = 0.343; p = 0.006). A small, statistically significant association was identified between social participation and social deprivation in the living environment, among only participants with dementia (Rs = 0.267, p = 0.033). The content analysis and graphical joint display revealed motivators, considerations that require extra attention, and strategies for managing social participation. The results underline how Everyday Technology use can be assistive to social participation but also the need to consider social deprivation of the living environment, especially among people with dementia.

Randomised controlled trial of a person-centred transition programme for adolescents with type 1 diabetes (STEPSTONES-DIAB): a study protocol.

INTRODUCTION: Adolescence is a critical period for youths with chronic conditions, when they are supposed to take over the responsibility for their health. Type 1 diabetes (T1D) is one of the most common chronic conditions in childhood and inadequate self-management increases the risk of short-term and long-term complications. There is a lack of evidence regarding the effectiveness of transition programmes. As a part of the Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS research programme, the objective of this study is to evaluate the effectiveness and experiences of different transitional care models, including a person-centred transition programme aiming to empower adolescents with T1D to become active partners in their health and care. METHODS AND ANALYSIS: In this randomised controlled trial, patients are recruited from two paediatric diabetes clinics at the age of 16 years. Patients are randomly assigned to either the intervention group (n=70) where they will receive usual care plus the structured transition programme, or to the control group (n=70) where they will only receive usual care. Data will be collected at 16, 17 and 18.5 years of age. In a later stage, the intervention group will be compared with adolescents in a dedicated youth clinic in a third setting. The primary outcome is patient empowerment. Secondary outcomes include generic, diabetes-specific and transfer-specific variables. ETHICS AND DISSEMINATION: The study has been approved by the Ethical Review Board in Stockholm (Dnr 2018/1725-31). Findings will be reported following the Consolidated Standards of Reporting Trials statement and disseminated in peer-reviewed journals and at international conferences. TRIAL REGISTRATION NUMBER: NCT03994536.

How accessible are grocery shops for people with dementia? A qualitative study using photo documentation and focus group interviews.

BACKGROUND: People with dementia who live in ordinary housing need to perform activities outside the home such as visiting friends, talking walks and doing grocery shopping. This article identifies and examines characteristics that may influence accessibility in the space of a grocery shop as perceived by people with dementia. METHODS: This is a qualitative study with a grounded theory approach. The data collection was done with two different methods. It started with photo documentation and continued with focus group interviews in combination with photo elicitation. Data from both photo documentation and focus groups were analysed according to a grounded theory approach. RESULTS: The categories "illogical arrangement", "overload of products, information and people", "visual illusions" and "intrusive auditory stimuli" showed characteristics in the grocery shop that influenced how accessible and usable the informants experienced a shop to be. Furthermore, personal capacities in relation to the specific characteristics of the grocery shop space had an influence on how accessible and usable the informants experienced the grocery shop to be. Capacities to find, stay focused and concentrated, meet stress, remember, interpret and discriminate sensory impressions through hearing and sight came to the fore as important. CONCLUSIONS: Characteristics of both the shop and the person need to be taken into account when supporting people with dementia in grocery shopping.

Treatment satisfaction correlated with glycaemic control and burden of diabetes in Swedish adolescents with type 1 diabetes.

AIM: To assess treatment satisfaction and perceived discomfort or pain from the treatment, and potential associations with glycaemic control, type of treatment, perceived burden of diabetes, sex and age, in adolescents with type 1 diabetes. METHODS: A cross-sectional study was performed at one paediatric and at one adult diabetes clinic in Sweden, preceded by a translation of 'Diabetes Treatment Satisfaction Questionnaire (DTSQ) Teen'. Adolescents with type 1 diabetes (15-20 years) participated. The questionnaires 'DTSQ Teen' and 'Check your health' were used. Data on glycosylated haemoglobin (HbA1c), type of treatment, sex and age were collected. RESULTS: One hundred and thirty-eight adolescents (70 females, mean age 17.3, mean HbA1c 64.0 mmol/mol) participated. Treatment satisfaction correlated inversely with HbA1c (r = -.352, P < .001) and with all types of burden of diabetes (r = -.342 to -0.467, P < .001), but did not differ with type of treatment, sex and age. Perceived pain correlated inversely with burden on physical health (r = -.265, P = .002), mental health (r = -.237, P = .006) and quality of life (r = -.246, P = .004) but not with HbA1c, age or burden on social relations. Females perceived more discomfort or pain. CONCLUSION: In Swedish adolescents with type 1 diabetes, treatment satisfaction correlated with both glycaemic control and perceived burden of diabetes.

A person-centered education for adolescents with type 1 diabetes-A randomized controlled trial.

INTRODUCTION: Young people with type 1 diabetes and their parents need to receive person-centered education to be able to manage their diabetes. Guided Self-Determination-Young (GSD-Y) is a person-centered communication and reflection education model that can be used in educational program for young people with type 1 diabetes. OBJECTIVE: To evaluate whether GSD-Y leads to improved glycaemic control, increased self-perceived health and health-related quality of life, fewer diabetes-related family conflicts, and improved self-efficacy in a group-based intervention for adolescents starting continuous subcutaneous insulin infusion (CSII) and their parents. METHODS: This randomized controlled trial included 71 adolescents starting CSII. Participants were followed for 12 months. The intervention group (n = 37) attended seven group training sessions over a period of 5 months, using the GSD-Y model, the control group received standard care. Variables evaluated were HbA1c, self-perceived health, health-related quality of life, family conflicts, self-efficacy, and usage of continuous glucose monitoring. RESULTS: When adjusted for sex and family conflicts, there was a difference in glycaemic control between the groups at 12 months, favoring the intervention group (62 vs 70 mmol/mol, P = .009). When analyses were performed on boys and girls separately and adjusted for family conflicts, the only difference detected was for boys after 12 months (P = .019). The intervention showed no effect on self-perceived health, health-related related quality of life, family conflicts, or self-efficacy. CONCLUSIONS: An intervention with GSD-Y may have an effect on glycaemic control. The content of the GSD-Y groups may serve as a model for person-centered care in adolescents with type 1 diabetes.

Everyday technologies and public space participation among people with and without dementia.

BACKGROUND.: Occupational therapists support everyday technology use; however, it is necessary to consider the challenges that people with dementia encounter with everyday technologies when participating in various places within public space. PURPOSE.: The purpose of the study was to explore stability and change in participation in places visited within public space in relation to the relevance of everyday technologies used within public space. METHOD.: People with dementia (n = 35) and people with no known cognitive impairment (n = 34) were interviewed using the Participation in Activities and Places Outside Home Questionnaire and the Everyday Technology Use Questionnaire. Data analysis used modern and classical test theory. FINDINGS.: Both samples participated in places within public space; however, participation and relevance of everyday technologies were significantly lower for the dementia group. IMPLICATIONS.: To enable participation, occupational therapists need to be aware of challenges that technologies and places within public space present to people with dementia.

Adolescents' experiences of obesity surgery: a qualitative study.

BACKGROUND: The positive effects of behavioural treatment and weight management in adolescents with severe obesity are modest. Obesity surgery can be an option for adolescents, but is not the first-hand choice of treatment. The knowledge about adolescents' own experiences of having undergone surgery and their thoughts and feelings of the follow-up period are limited. OBJECTIVES: To describe adolescents' decision to go through obesity surgery as teenager and their experiences of the follow-up period. SETTING: National Childhood Obesity Centre at Karolinska University Hospital in Stockholm, Sweden. METHODS: Phone interviews with 20 young adults that went through obesity surgery as teenagers. Interviews were analysed with qualitative systematic text condensation. RESULTS: "Lost in the healthcare system" and "A rough but well worth journey to a healthier life" were the categories that appeared in our analysis. The participant had a feeling of uncertainty about contacts with the healthcare system and the transition to primary care was confusing. Most of the participants were happy with the decision to go through obesity surgery as teenager, despite it had been a difficult time. CONCLUSIONS: Our results show implications for improving the clinical care of adolescents undergoing obesity surgery, which should be offered as a last choice. Information and individualized supports should be offered more often during first year postsurgery and should be given by a multidisciplinary team. This multifaceted population should be given priority for a successful transition.

Adolescents' perceptions of participation in group education using the Guided Self-Determination-Young method: a qualitative study.

OBJECTIVE: Guided Self-Determination (GSD) is a person-centered communication and reflection method. Education in groups may have a greater impact than the content of the education, and constructive communication between parents and adolescents has been shown to be of importance. The purpose of this study was to describe adolescents' perceptions of participation in group education with the Guided Self-Determination-Young (GSD-Y) method, together with parents, in connection with the introduction of continuous subcutaneous insulin infusion. RESEARCH DESIGN AND METHODS: In the present qualitative interview study, 13 adolescents with type 1 diabetes were included after completing a GSD-Y group education program in connection with the introduction of continuous subcutaneous insulin infusion at three hospitals located in central Sweden. The adolescents were interviewed individually, and qualitative content analysis was applied to the interview transcripts. RESULTS: Two categories that emerged from the analysis were the importance of context and growing in power through the group process. An overarching theme that emerged from the interviews was the importance of expert and referent power in growing awareness of the importance of self-management as well as mitigating the loneliness of diabetes. CONCLUSIONS: GSD-Y has, in various ways, mitigated experiences of loneliness and contributed to conscious reflection about self-management in the group (referent power) together with the group leader (expert power). Overall, this highlights the benefits of group education, and the GSD method emphasizes the person-centered approach. TRIAL REGISTRATION NUMBER: ISRCTN22444034; Results.

Guided self-determination-young versus standard care in the treatment of young females with type 1 diabetes: study protocol for a multicentre randomized controlled trial.

BACKGROUND: Female adolescents with type 1 diabetes mellitus (T1DM) have the most unsatisfactory glycaemic control of all age groups and report higher disease burden, poorer perceived health, and lower quality of life than their male counterparts. Females with T1DM face an excess risk of all-cause mortality compared with men with T1DM. New methods are needed to help and support young females with T1DM to manage their disease. A prerequisite for successful diabetes management is to offer individualized, person-centred care and support the patient's own motivation. Guided self-determination (GSD) is a person-centred reflection and problem-solving method intended to support the patient's own motivation in the daily care of her diabetes and help develop skills to manage difficulties in diabetes self-management. GSD has been shown to improve glycaemic control and decrease psychosocial stress in young women with T1DM. The method has been adapted for adolescents and their parents, termed GSD-young (GSD-Y). The aim of this study was to evaluate whether an intervention with GSD-Y in female adolescents with T1DM leads to improved glycaemic control, self-management, treatment satisfaction, perceived health and quality of life, fewer diabetes-related family conflicts, and improved psychosocial self-efficacy. METHODS/DESIGN: This is a parallel-group randomized controlled superiority trial with an allocation ratio of 1:1. One hundred female adolescents with T1DM, 15-20 years of age, and their parents (if < 18 years of age), will be included. The intervention group will receive seven individual GSD-Y education visits over 3 to 6 months. The control group will receive standard care including regular visits to the diabetes clinic. The primary outcome is level of glycaemic control, measured as glycosylated haemoglobin (HbA1c). Secondary outcomes include diabetes self-management, treatment satisfaction, perceived health and quality of life, diabetes-related family conflicts, and psychosocial self-efficacy. Data will be collected before randomization and at 6 and 12 months. DISCUSSION: Poor glycaemic control is common in female adolescents and young adults with T1DM. Long-standing hyperglycaemia increases the risks for severe complications and may also have an adverse impact on the outcome of future pregnancies. In this study, we want to evaluate if the GSD-Y method can be a useful tool in the treatment of female adolescents with T1DM. TRIAL REGISTRATION: Current controlled trials, ISRCTN57528404 . Registered on 18 February 2015.

Parent's perception of their children's health, quality of life and burden of diabetes: testing reliability and validity of 'Check your Health' by proxy.

AIM: To test the validity and reliability of the 'Check your Health by proxy' instrument in parents to children with diabetes aged 8-17 years. METHODS: One hundred and ninety-one caregivers and their children, aged 8-17 years, were included. All completed the 'Check your Health' questionnaire measuring quality of life and burden of diabetes, DISABKIDS self- or proxy version, and 45 completed the same questionnaires 2 weeks later. RESULTS: Test-retest reliability on the 'Check your Health' questionnaire by proxy was moderate to strong (r = 0.48-0.74), p < 0.002). Convergent validity was weak to moderate (r = 0.15-0.49, p < 0.05). The instrument showed acceptable discriminant validity. Parents reported lower scores than the children on emotional health and social relations and higher scores on physical and emotional burden and higher burden on quality of life. Poorer social relationships and quality of life were associated with higher reported disease severity. The diabetes burden domain of the questionnaire correlated to perceived severity of diabetes and to perceived health. Discriminant validity showed that poorer social relationships and quality of life were associated with higher severity of the disease. The diabetes burden domain of 'Check your Health' by proxy showed discriminant validity on perceived severity of diabetes. CONCLUSIONS: The instrument 'Check your Health' by proxy showed acceptable psychometric characteristics in parents to young people (8-17 years of age) with diabetes. We also concluded that parents reported that their children had lower health and higher burden of diabetes than the children did, and it correlated to reported disease severity.