Objective

This study aimed to investigate if and how patient-reported measures from national and local monitoring stimulate patient involvement in hospital quality improvement (QI) interventions. We were also interested in the factors that influence the level and degree of patient involvement in the QI interventions.

Methods

The study used a qualitative, descriptive design. Inspired by the Framework Method, we created a working analytical framework. Four hospital departments participated in the data collection. Collaborating with a QI leader from each department, we identified the monitoring systems for the patient-reported measures that were used to initiate or evaluate QI interventions. Thereafter, the level and degree of patient involvement and the factors that influenced this involvement were analysed for all QI interventions. Data were mapped in an Excel spreadsheet to analyse connections and differences.

Results

Departments used patient-reported measures from both national and local monitoring systems to initiate or evaluate their QI interventions. Thirty-one QI interventions were identified and analysed. These interventions were mainly conducted at the direct care and organisational levels. By participating in questionnaires, patients were involved to the degree of consultation. Patients were not involved to the degree of partnership and shared leadership for the identified QI interventions.

Conclusions

Overall, hospital departments have limited knowledge regarding patient-reported measures and how they are best applied in QI interventions and how they support improvements. Applying patient-reported measures to hospital QI interventions does not enhance patient involvement beyond the degree of consultation.

Aims: The quality control of pediatric orthopaedic treatment options requires patient reported outcome measures that offer comparison to referenced populations. This study aimed to contribute to the validation of the Swedish translation of the norm-referenced PROMIS profile-25.

Methods: Three questionnaires were administered one year after an acute knee injury via the Swedish paediatric orthopaedic registry (SPOQ). The questionnaires were: (1) The PROMIS Pediatric Profile-25, including the short-forms Mobility, Anxiety, Depression, Fatigue, Peer Relationships, Pain Interference and the single-item Pain Intensity, translated following the FACIT translation method, (2) the Knee Injury and Osteoarthritis Outcome scales for children (KOOS-Child, previously validated in Swedish) with the scales Pain, Symptoms, ADL, Sport/play and QoL (39 questions), and (3) a single VAS item, Overall Health Scale. Convergent validity was assessed by interscale correlations and a one-way ANOVA was used to identify differences between three injury categories.

Results: Of 218 eligible patients, 104 (53 girls, 9-14 years, mean 13 years, 42 with patella luxation, 34 with anterior cruciate ligament rupture and 28 with other knee injuries), returned questionnaires. PROMIS and KOOS-Child had 1% incomplete answers. There was high positive correlation between all KOOS-Child scales, and KOOS-Child-Pain explained a large amount of variance in Symptoms (R2 = .610), ADL (R2 = .648), Sport/play (R2 = .462) and QoL (R2 = .423). An expected high correlation between KOOS-Child-pain and PROMIS-Pain-Interference was found (r = .581, p = \.001). The expected relationship between the PROMIS-Mobility scale and KOOS-Child-QoL (r = .815, p = \.001) was found, confirming that at this age QoL is associated with physical functioning. There were statistically significant differences between the three diagnosis categories for two PROMIS scales: PROMIS-mobility (F(2, 101) = 6.901, p = .002) and PROMIS-depression (F(2, 101) = 3.116, p = .049). The PROMIS subscales showed high Cronbach’s alpha (between 0.730 and 0.864).

Conclusions: This study is the first in Sweden to investigate the psychometric properties of the PROMIS profile-25 and highlights its relationship to the criterion measure of KOOS-Child. PROMIS-25 uses self-report, ultra-brief measurement for screening, providing additional information that was not available using previous questionnaires. PROMIS-25 can contribute to quality control and lead to improved treatment decisions. Data collection is ongoing through the orthopaedic registry, which will provide further evidence of how PROMIS-25 performs in other paediatric orthopaedic conditions.

BACKGROUND: Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).

AIMS: The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment.

METHOD: Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures.

RESULTS: A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence.

CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

In Sweden the health system is nationally regulated and locally provided by 21 regions and 290 municipalities. To meet the shifting paradigm, where the person is viewed as a co-producer of health and care, Sweden has laws, regulations and policies which support the patient as an active partner in the communication with professionals in the system. Coproduction, person-centred care and shared decision making contribute jointly to the paradigm shift. Principles of human dignity and equity must be supported nationally and enacted in the decentralized, regional provision of care. Infrastructures exist or are under development which can support and strengthen care that is co-produced and based in a person-centred philosophy and approach, where shared decision making becomes a reality in practice. A Knowledge management system together with National Quality registries have the potential to form a co-produced, person-centred learning health system, where patients, and next of kin and professionals are included as partners. The joint integration of Shared decision making, Person-centre care and Coproduction into the Swedish healthcare system now looks like a possible way to realize the emerging paradigm.

BACKGROUND: Diabetes self-management education and support (DSMES) is a cornerstone in the treatment of type 2 diabetes mellitus (T2DM). It is unclear whether delivering DSMES as a digital health intervention (DHI) might meet the needs experienced by patients with T2DM and diabetes specialist nurses (DSN) of the primary health care system in Sweden. METHODS: Fourteen patients with T2DM and four DSN participated in three separate focus groups: two groups comprised patients and one group comprised DSN. The patients discussed the questions: "What needs did you experience after your T2DM diagnosis?" and "How might these needs be met with a DHI?" The DSN discussed the questions: "What needs do you experience when treating a patient with newly diagnosed T2DM?" and "How might these needs be met with a DHI?". Furthermore, data were collected in the form of field notes from group discussions at a meeting including 18 DSNs working with T2DM in PHCCs. The discussions from focus groups were transcribed verbatim and analyzed together with the field notes from the meeting using inductive content analysis. RESULTS: The analysis yielded the overall theme: "Overcoming the struggle of living with T2DM", which was summarized in two categories: "learning and being prepared" and "giving and receiving support". Important findings were that, for success, a DHI for DSMES must be integrated into routine care, provide structured, high-quality information, suggest tasks to stimulate behavioral changes, and provide feedback from the DSN to the patient. CONCLUSION: This study highlighted several important aspects, from the perspectives of both the patient with T2DM and the DSN, which should be taken into consideration for the successful development and use of a DHI for DSMES.

Aim: The aim was to describe the development of a caritative caring conceptual model aimed to facilitate undergraduate nursing students’ learning during clinical practice. Design: An explorative design was used.

Methods: The Delphi method with a panel of 12 experts together with a literature search with a systematic approach were used and data were analysed according to content analysis.

Results: The Model for Improvements in Learning Outcomes (MILO) consists of eight core concepts divided into four intrapersonal concepts (nursing, a reflective approach, a critical approach, quality and safety) and four contextual concepts (peer learning, co-clinical teachers, student-centred and student-active supervision, a good learning environment). MILO is grounded in the theory of caritative caring with a hermeneutic approach and the understanding of caring and learning as parallel processes. Tools such as reflection, structure and guiding pm are used to intertwine caring, nursing, pathophysiology and medicine.

Conclusions: MILO intertwines didactics with concepts important for nursing students’ learning with a foundation in caritative caring and may facilitate undergraduate nursing students’ learning in clinical practice.

Objective: Health education programs using group learning sessions for patients with long-term conditions have been tested, but not evaluated. In order to evaluate such sessions, the purpose was to explore experiences from patients with long-term conditions after participating in group learning sessions.

Methods: A descriptive design based on qualitative content analysis was used. Interviews were conducted with 19 patients with different long-term conditions, and participants were asked about their experiences after taking part in the group learning sessions.

Results: Sharing experiences with one another gave them opportunities for learning. Patients described a metaphorical "expanded window," which opens in the group learning sessions; comparable to encounters during regular visits to health care providers. The nature of the learning environment that follows the educational model, together with describing lived experiences, allowed patients to share capability and resources, which was found to be foundational.

Conclusions: The health education program as a format was important for shared learning. The facilitator can support the learning by structuring the format, but most essential was sharing experiences that facilitated each patient's learning that can aid the support of individual self-management.

Background: Takotsubo syndrome (TTS) is an acute and reversible type of heart failure that shares common features with acute coronary syndrome. It is usually caused by psychological or physical stress, but for a third, triggers cannot be identified. Patients also suffer from residual symptoms and decreased mental health in the recovery phase and may struggle to comprehend and manage everyday living.

Aim: To describe patients' experiences when afflicted by takotsubo syndrome, after discharge from hospital.

Method: An inductive explorative design using a qualitative approach with semi-structured individual interviews. The text was analysed using qualitative content analysis according to Graneheim and Lundman.

Result: Ten women and one man afflicted by TTS were interviewed two to twelve months after discharge. Six sub-categories were identified, and a main category emerged: The process from symptom onset and understanding to increased awareness and changes in life. The patients suffered from emotional reactions and they sought answers and understanding about the underlying causes. The disease led to changes in patients' daily lives as they were affected physically and psychologically. Spouses and/or bystanders had a positive supporting role, but the patients desired more support from the healthcare professionals such as an earlier appointment for follow-up with a nurse.

Conclusion: Being afflicted by TTS can lead to changes in life conditions but these changes vary among patients. Becoming ill was associated to acute physical stress and prolonged psychological stress and they suffered from emotional reactions. The follow-up care needs to improve as the patients need more guidance from healthcare professionals and earlier appointment for follow-up with a nurse. A structured and multiprofessional treatment with a person-centred approach could support patients in their recovery.

Background: When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR) co-produced person-centred and cohesive clinical pathways together with healthcare professionals (HPR). Research on co-production in healthcare at the national level is scarce. The aim of this study is to explore experiences of patient participation from the perspectives of both PRs and HPRs when co-producing clinical pathways within the Swedish nationwide healthcare system for knowledge-based management. Methods: A qualitative study was conducted. A strategic sample of nine PRs and eight HPRs were interviewed individually between August 2022 and January 2023 using a semi-structured interview guide. We analysed data using an inductive content analysis. Results: Three main categories were identified: (1) Finding appropriate patient representativeness; (2) Working methods that facilitate a patient perspective; and (3) Influence of the patient perspective in the clinical pathways. Conclusions: The study demonstrates the importance of patient and next-of-kin participation in the construction of clinical pathways at the national level. The results provide a platform for further research on patient participation on the national level and add to studies on if and how patient participation on this level has an impact on how the clinical pathways are put into practice at the micro level, and the support provided at the meso level. The study contributes to the growing body of literature studying patient participation and co-production. Trial registration: Region Örebro County ID 276,940. An advisory opinion was obtained from the Swedish Ethical Review Authority (2021-05899-01).

Background: The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time.

Methods: Each meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined.

Results: The body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective.

Conclusion: This study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery.Implications for RehabilitationA better understanding of the data collected through the Burn Model Systems (BMS) project may contribute to improve data collection tools and ultimately lead to clinical practice innovations and improvements. Clinicians interested in using BMS data for research purposes can better understand what topics are included and excluded in the collection and what perspectives are addressed.This study highlights the need for burn clinicians around the world to lend their expertise to the WHO for the development of a much needed burn injury International Classification of Functioning, Disability and Health Core Set.

Objective: To link, classify and describe the content of the Multicenter Benchmarking Study Burn Outcomes Questionnaires (BOQ) using the International Classification of Functioning, Disability and Health (ICF) to determine if the information garnered provides researchers with the data necessary to develop a comprehensive understanding of life after burns.

Methods: Two ICF linking experts used a standardized linking technique endorsed by the World Health Organization to link all BOQ concepts to the ICF. Linking results were analyzed to determine the comprehensiveness of each of the five measures.

Results: The activities and participation component was most frequently addressed followed by the body functions component. Environmental factors are not extensively covered and body structures are not addressed. ICF chapter and category distribution were skewed and varied between assessments. The majority of BOQ items are of the health status perspective.

Conclusion: BOQ item composition could be improved with a more even distribution of pertinent ICF topics. Assessment authors may consider addressing the impact of environmental factors on participation. Including body structure concepts would allow investigators to track structural deformation and/or developmental delay. Generally speaking, this data should not be used to examine quality of life outcomes.

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments.

Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system.

Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings.

Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations.

Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

Background:

In the procedures of surgical pathways it is important to create opportunities for developing active forms of engagement and extending the patients’ health maintenance knowledge, which is essential in nursing. One way is to understand more about the concept of coproduction.

Objective:

The purpose was to use experiences from spinal surgery patients’ narratives to explore the conceptual model of healthcare service coproduction.

Method:

A prospective qualitative explorative approach was performed and analyzed in two phases with inductive and deductive content analysis of data retrieved from five focus group interviews of 25 patients with experiences from spinal surgery interventions.

Result:

The findings indicate that mutual trust and respect, as well as guidance given in dialogue, are two important domains. An illustration of how to apply the conceptual model of healthcare service coproduction was revealed in the descriptions of the three core concepts co-planning, co-execution and civil discourse.

Conclusion:

This study highlights what is needed to reach coproduction in healthcare services concerning patients with spinal disorders. Development of care plans that focuses on co-planning and co-execution is recommended which are structured and customizable for each patient situation to make coproduction to occur.

Aim: Advances in technology generate new opportunities to develop e-health tools to help individuals in self-management by assessing symptoms of illness and its relation to treatments. Self-management is central when living with primary immunodeficiency diseases. The aim was to explore the experiences of people living with primary immunodeficiency, who used a pilot version of the web-based health diary.

Design: Explorative design.

Methods: In total, 16 participants (median age 59) attended one of three focus groups. Inductive content analysis was used.

Results: The participants could be encouraged to discover aspects of their health by contributing to documentation which could support the health concept. A greater understanding about their own health and communicating with healthcare professionals during encounters was expressed. The web-based health diary is a helpful tool to discover aspects of health that affects the individuals’ life situation and assists the self-management of a long-term condition such as immunodeficiency.

Aims and objectives: To evaluate patient-reported experiences of facilitated subcutaneous immunoglobulin treatment in adults with primary or secondary immunodeficiency.

Background: Decreased levels of circulating antibodies (humoral immunodeficiency) are often associated with higher infection rates which cause problems in daily living, for example, symptoms of severe and recurrent bacterial infections that may cause chronic lung diseases. For some diagnoses, treatment with immunoglobulin becomes critical and lifelong. The acceptability of administration forms is important to achieve adherence to treatment and to increase quality of life for these patients.

Design: Convergent mixed-method approach.

Methods: A structured telephone interview with nine questions evaluated on a score scale about treatment experience, satisfaction and ancillary supplies was used, followed by open-ended questions for each item.

Results: Prohibiting factors were revealed, exemplified by problems due to technical issues and ancillary supply issues. Promoting factors were shown by high a satisfaction according to the score-scale when combining treatment with daily life as well as increased well-being. Facilitated subcutaneous immunoglobulin treatment led to fewer treatment sessions, with a time-saving aspect also described by high scores in the item concerning longer treatment interval.

Conclusions: The opportunity to be given the best possible treatment plan adjusted for each patient's situation is central. Healthcare professionals should discuss the different aspects that can promote and inhibit the outcomes of treatment.

Relevance to clinical practice: The results can help professionals to understand different factors that may impinge on the patients' everyday life when they are forced into a lifelong treatment regimen. This knowledge is also important for nurses who have a responsibility to promote health concerning patients with long-term conditions in general. 

Measuring the health-related quality of life (HRQOL) is one way to understand an individual’s perspective on health, and, more specifically, how type 1 diabetes (T1D) affects a child’s everyday life. Early detection of poor HRQOL is considered a crucial factor for identifying children who are at risk of psychosocial problems. The aim of this study was to describe the differences in the HRQOL of children with T1D according to age, gender, and metabolic control (HbA1c). Cross-sectional data were collected from children with T1D using the DISABKIDS Chronic Generic Measure-37 (DCGM-37) and the diabetes specific module (DM-10). Non-parametric tests were used to investigate differences. There were differences between girls and boys, and girls reported lower HRQOL than boys (HRQOL total score: mean 74 and 67 respectively; p = .005). Adolescents described more worries and fears about the future compared with younger children. Children with poor metabolic control reported a lower HRQOL than those with better metabolic control (HRQOL total score:mean 68 and 76 respectively; p = .006), but the social dimensions were not affected. The findings of the present study elucidate the importance for paediatric nurses to explore potential problems in children with T1D and use this knowledge in clinical practice. Assessment of the HRQOL can provide the patient’s perspective on the quality of diabetes care. The HRQOL is correlated with HbA1c, gender, and age, and the HRQOL as well as HbA1c levels should be regularly assessed to establish a comprehensive care for children with T1D.

The management of diabetes is complicated, as treatment affects the everyday life of both children and their families. To enable optimal care for children with type 1 diabetes, it is important to highlight health-related quality of life (HrQoL) as well as medical outcomes to detect psychological problems that otherwise could be missed. The aim was to study HrQoL in children and adolescents with type 1 diabetes dependent on gender, age and co-morbidity and to study the consistency between children’s self-reporting and parents’ proxy reporting. The cross-sectional data were collected using the questionnaire DISABKIDS Chronic Generic Measure and the DISABKIDS diabetes module. Parents in the proxy report perceived their children’s HrQoL to be lower than children themselves. Boys reported their HrQoL to be better than girls. Results show that living with an additional disease has an impact on the HrQoL, which is an important factor to consider in the quality registry. Assessing HrQoL on a routine basis may facilitate detection and discussion of HrQoL-related questions in the national quality registry.

Background

It has been stated that care for children with chronic health conditions tends to focus on condition-specific issues rather than how these children experience their health and everyday life functioning.

Aim

The aim of this study was to explore children's experiences about a structured assessment of health-related quality of life applied during a patient encounter.

Methods

Prior to the start of the study, a clinical intervention based on the questionnaire DISABKIDS Chronic Generic Measure (DCGM-37) was performed. A qualitative explorative design was chosen, and 25 children between 10–17 years of age were interviewed after the consultation at four different paediatric outpatient clinics. Data were analysed according to qualitative content analysis.

Results

The results were twofold: children experienced that the assessment was providing them with insights about their health, which motivated them to make lifestyle changes. When outcomes were discussed and requested, the children felt encouraged.

Conclusions

The use of an assessment of health-related quality of life may promote insights about health and encourage children with chronic health conditions to discuss their outcomes with healthcare professionals.

Background: Children and healthcare professionals should be provided with easy-to-use tools which could lead to actionable results.

Objectives: There is increasing interest in the use of patient reported outcomes to aid management of individual care; therefore, the use of health-related qualityof life (HRQOL) assessments during consultations need to be studied. The aim of this study was to explore how healthcare professionals use a HRQOL assessment tool during paediatric encounters.

Design: A descriptive, explorative design with a qualitative approach based on video recordings was chosen.

Methods: Twenty-one video recordings, from nine different healthcare professionals’ consultations where an assessment tool of HRQOL were used were analysed by content analysis.

Results: The healthcare professionals were using different strategies and when they combined these strategies three approaches emerged. The instructing approach was characterized by healthcare professionals giving a summary of the results, leading to children becoming passive bystanders in the encounter. Based on an inviting approach, the children’s perceptions of their situation were requested while the items were explored. This resulted in involving the children in the conversations. In the engaging approach, an open dialogue and a common interpretation were sought to guide further care which was interpreted as children becoming actively involved.

Conclusions: The child’s involvement could be facilitated depending on which approach is being used. When an inviting and engaging approach is used, actions in a non-linear set of interactions is co-produced with the child.

Relevance to practice: The use of an HRQOL assessment tool change the management during consultations and could promote child involvement dependent on which approach the healthcare professionals are using.

Introduction: Interventions that support patients to handle the emotional and medical aspects of a long-term health condition is important. One way is to use peer-support groups, to help patients solving problems, increasing their knowledge and making decisions.

Aim: was to investigate the impact on shared decision-making, empowerment and coping after participation in group-learning sessions for patients with long-term conditions (N = 42).

Design: An intervention following a health education programme based on group-learning sessions was established. Eight different programmes were held in five different departments at a regional county hospital in Sweden.

Methods: Questionnaires were analysed using paired-sample t-test.

Results: Results showed that patients might have better opportunities to be more active during their patient encounter after attending the group learning sessions. Interventions directed to patient activation may be one key in future healthcare management, especially concerning long-term conditions. Empowering patients is central in healthcare, and using different approaches is important.

What does this paper contribute to the wider global clinical community? 

• Patients with long-term conditions should be encouraged to share their knowledge to others, which can give support in managing their disease
• Group-learning sessions can add a perspective of patients' lived knowledge which is one of the key aspects concerning treatment of patients with long-term conditions

Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

Introduction: Living with a chronic condition such as type 1 diabetes (T1D) affects everyday life and support from others experiencing a similar situation can be helpful. A way to receive such support is to use an online network where people can connect and share experiences. Research has described the benefits of using such tools for connecting patients. The aim of this study was to describe the co-design of a social network for young people with T1D and to describe their experiences when using this network.

Methods: A co-design approach was used, following three steps adapted from Sanders and Stappers (2008). In all, 36 adolescents with T1D participated. Data in the form of recordings and notes from telephone interviews, workshops and focus groups were collected and then analysed using content analysis. Numerical data from the digital platform were also used.

Findings: For the interpersonal values, supporting, learning and relating to emerge, the framework of the network must be appealing and user-friendly. The limits of time and place are eliminated, and there is a possibility for many more to join in.

Conclusion: Co-design ensures that what stakeholders think is important forms the basis for the design. The interpersonal values that are promoted are ones that only the exchange of lived knowledge and experience can generate. It is complementary to the support that healthcare professionals can offer; thus, this kind of social network is important for improved, coproduced care.

Patient or Public Contribution: The participants in the present study were persons living with T1D. They were active co-creators from the start to the end. An adult person with experience of living with T1D was involved as an advisor in the research team when drafting the manuscript.

Many children and adolescents with type 1 diabetes (T1D) have difficulties reaching the national treatment goal for HbA1c (long-term blood sugar) which is associated with increased risk for complications. This makes it important to explore what patients and their caregivers describe important in coping with everyday life. The study has been conducted within a pediatric diabetes team in the south of Sweden. The aim was to explore how Experienced-Based Co-Design (EBCD) can be used to identify, test, and evaluate improvement efforts in order to support the family with a child with T1D. A modified variant of EBCD based on focus groups, workshops, and interviews with stakeholders was used. The improvement proposal parental coaching was tested and was appreciated by the participants. The qualitative content analysis of the interviews showed that the coaching program contributed to better confidence and self-efficacy. Both coaches and coachees described that the coaching contributed to better competence and a feeling of hope after attending the coach program. Experienced-Based Co-Design gave an opportunity to explore what?s important to improve, based on experiences and needs of several stakeholders.

Background/Objectives: Government guidance promote benchmarking comparing quality of care including both clinical values and patient reported outcome measures in young persons with type 1 diabetes. The aim was to test if the Nordic DISABKIDS health-related quality of life (HrQoL) modules were construct valid and measurement comparable within the three Nordic countries. Methods: Data from three DISABKIDS validation studies in Sweden, Denmark, and Norway were compared using Rasch and the graphical log-linear Rasch modeling. Monte Carlo methods were used to estimate reliability coefficient and target was defined as the point with the lowest SE of the mean. Self-report data were available from 99 Danish (8-18 years), 103 Norwegian (7-19 years), and 131 Swedish (8-18 years) young people. Results: For the DISABKIDS higher scores on most subscales were noted in the Norwegian population. The Swedish sample had a significantly higher score on the “Diabetes treatment” subscale and scores closer to optimal target than the other countries. For each country, construct validity and sensitivity were acceptable when accounting for differential item function (DIF) and local dependency (LD). Less LD and DIF were found if only Denmark and Norway were included. The combined model was reliable; however, some differences were noted in the scale translations relating to the stem and response alternatives, which could explain the discrepancies. Conclusion: The Nordic versions of the DISABKIDS questionnaires measures valid and reliable HrQoL both within and between countries when adjusted for DIF and LD. Adjusting the Likert scales to the same respond categories may improve comparability. 

In Sweden, children and adolescents with intellectual disability in special residences often have complex support needs. In this study, co-production refers to when and how staff in special residences, and children and adolescents living there, interact to promote support that enhances their participation in everyday life according to their desires and needs. The study explores staff experiences of the conditions for co-producing individual support at LSS residences for children and adolescents with intellectual disability. Qualitative content analysis was used to analyze focus group interviews with staff in LSS residences. The analysis identified three generic categories: establishment of a structured context, continuous individual support development, and influencing factors for co-production. A key finding derived from the generic categories was that the conditions for co-produced support are impeded by communication barriers between staff and children/adolescents. Practical implications and future research are discussed.

Children with intellectual disability receiving residential support, according to the Swedish Disability Act, need substantial support to cope with everyday life. These children have cognitive and communicative limitations, entailing difficulties for staff in consulting the children regarding their support arrangements. In addition, due to lack of research there are knowledge gaps and uncertainties concerning how staff can provide the children's support. To deliver high qualitative support, research suggests that disability organisations should (1) continuously work with quality improvement, (2) adopt a multi-dimensional framework that explains human functioning and disability as a basis for understanding individual support needs, and (3) use person-centred approaches. Based on these principles, this study has applied a realist evaluation to identify enablers and barriers during the implementation of an improvement programme aimed at improving staff's ability to provide support to children living in special residences.