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Quality of Care in Children and Adolescents with Type 1 Diabetes: Patients’ and Healthcare Professionals’ Perspectives
Linköping University, Department of Clinical and Experimental Medicine. Linköping University, Faculty of Health Sciences.
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Type 1 diabetes is a chronic disease for which there is currently no cure, and high quality care is essential if acute and long-term complications are to be avoided. Many children and adolescents have inadequate metabolic control with increased risk for complications later in life, and adolescent girls have reported low quality of life. Differences in metabolic control between treatment centres have been found but the reasons for this are unclear. Diabetes is a largely self-managed disease. Patient education is central to successful self-management but little is known about how to make best use of diabetes communities on the Internet and integrate them into a practitioner-driven service.

Aim: The main objective of this thesis was to gain better understanding of how to improve the quality of diabetes care for children and adolescents, aiming to have near-normal blood glucose, to prevent both acute and late complications and to have good quality of life.

Methods: The geographic populations of two paediatric centres (n=400) received validated questionnaires on perceived quality of care and Health-Related Quality of Life (HRQOL). An intervention with a web portal containing diabetes-related information and social networking functions was carried out within the same population. Clinical variables from 18 651 outpatient visits registered in the Swedish paediatric diabetes quality registry, SWEDIABKIDS were analysed. Using data from SWEDIABKIDS, five centres with the lowest mean HbA1c, five with the highest, and five with the largest decrease in centre mean HbA1c between 2003 and 2007 were identified. Team members (n=128) were asked about structure, process, policy, and the messages given to patients about important diabetes issues.

Results: Specific areas that were identified as needing improvement included information about self-care, waiting time at outpatient clinics and for treatment, and access to care. Diabetes seemed to reduce HRQOL. Subjects with better metabolic control and with higher frequency of injections reported slightly higher HRQOL, as did those living with both parents compared to those with separated parents. Only 35% of children and adolescents with diabetes in Sweden had an HbA1c level below the treatment target value. Mean HbA1c showed a correlation with mean insulin dose, diabetes duration, and age. A difference between centres was found, but this could not be explained by differences in insulin dose, diabetes duration, or age. Adolescent girls reported lower HRQOL, as did parents of girls aged < 8 years. Girls also had poorer metabolic control, especially during adolescence.

In teams with the lowest and the most decreased mean HbA1c, members gave a clear message to patients and parents and had a lower HbA1c target value. Members of these teams appeared more engaged, with a more positive attitude and a greater sense of working as a team. Members of teams with the highest mean HbA1c gave a vaguer message, felt they needed clearer guidelines, and had a perception of poor collaboration within the team. High insulin dose, large centre population, and larger teams also seemed to characterize diabetes centres with low mean HbA1c. The most frequently visited pages on the web portal were the social networking pages, such as blogs, stories and discussions, followed by the diabetes team pages. Those who used the portal most actively were younger, had shorter diabetes duration, and lower HbA1c, and were more often girls. The web portal was not found to have any significant beneficial or adverse effects on HRQOL, empowerment or metabolic control.

Conclusions: The quality of diabetes care for children and adolescents in Sweden is not sufficiently good and needs to improve further if complications in later life are to be avoided. Psychosocial support for children and adolescents with diabetes should be appropriate for age and gender. The attitudes of the members in the diabetes care team and the message they give to patients and their parents seem to influence metabolic control in children and adolescents. A clear and consistent message from a unified team appears to have beneficial effects on metabolic control. A web portal that includes comprehensive information about diabetes, and the opportunity to communicate with other people with diabetes and with healthcare professionals may be a useful complement to traditional patient education tools. Members of the diabetes team should encourage its use.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2010. , 74 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1208
Keyword [en]
type 1 diabetes, pediatric, quality of care, HbA1c, quality of life, patient education, e-health
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:liu:diva-59336ISBN: 978-91-7393-311-7 (print)OAI: oai:DiVA.org:liu-59336DiVA: diva2:351220
Public defence
2010-10-08, Berzeliussalen, Hälsouniversitetet, Campus US, Linköpings universitet, Linköping, 09:00 (English)
Opponent
Supervisors
Available from: 2010-09-17 Created: 2010-09-13 Last updated: 2010-09-17Bibliographically approved
List of papers
1. Quality of care from the patient's perspective in pediatric diabetes care
Open this publication in new window or tab >>Quality of care from the patient's perspective in pediatric diabetes care
2006 (English)In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 72, no 2, 197-205 p.Article in journal (Refereed) Published
Abstract [en]

This study aimed to investigate perceived quality of diabetes care. A geographic population of 400 type 1 diabetes patients <20 years received the validated questionnaire quality of care from the patient's perspective (QPP) including additional context-specific items. Primary endpoints were perceived reality of care by specific items and factors and their subjective importance, respectively. Relations to severe hypoglycemia, HbA1c, insulin dose, BMI, age, duration and sociodemographic factors were also studied. On average, a high perceived quality of care was reported from both parents and adolescents (response rate 285/400 (71%) and 155/237 (65%), respectively), highest regarding possibility to talk to nurse/doctor in privacy, respect, general atmosphere, continuity in patient-physician relationship and patient participation. Lower perceived reality with higher subjective importance was seen for information about results from medical examinations and treatments and information about self-care, access to care and waiting time. While parents' and their adolescents' mean ratings correlated well for reality r = 0.95 (p < 0.001) and importance r = 0.53 (p = 0.023), parents rated reality level higher (p = 0.012) and importance even higher (p < 0.001). The QPP instrument used with additional context-specific items can provide specific information to be used in quality of care development. In our setting, improvements are needed regarding patient information, access to care and waiting time. © 2005 Elsevier Ireland Ltd. All rights reserved.

Keyword
type 1 diabetes, children and adolescents, quality of care, patient satisfaction
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-36120 (URN)10.1016/j.diabres.2005.10.009 (DOI)29997 (Local ID)29997 (Archive number)29997 (OAI)
Available from: 2009-10-10 Created: 2009-10-10 Last updated: 2017-12-13
2. Health-related quality of life in intensively treated young patients with type 1 diabetes
Open this publication in new window or tab >>Health-related quality of life in intensively treated young patients with type 1 diabetes
2009 (English)In: Pediatric Diabetes, ISSN 1399-543X, Vol. 10, no 6, 374-381 p.Article in journal (Refereed) Published
Abstract [en]

This study aimed to analyse the impact of the disease and treatment on health-related quality of life (HRQOL) in intensively treated young patients with diabetes. Our main hypothesis was that metabolic control, gender, age and socio-economic status predict HRQOL. All children and adolescents (n = 400, 191 girls) and parents in a geographic population of two paediatric clinics in Sweden [mean age 13.2 yr, ±SD 3.9, range 2.6-19.6; mean duration of diabetes 5.1 yr, ± SD 3.8, range 0.3-17.6; yr mean haemoglobin A1c (HbA1c) 7.1%, ±SD 1.2, range 4.0-10.7] received the DISABKIDS questionnaire, a validated combined chronic generic and condition-specific HRQOL measure for children, and the EuroQol-5D questionnaire. Parents as proxy perceived HRQOL lower than their children. Adolescents with separated parents reported lower generic HRQOL (GeHRQOL) and diabetes-specific HRQOL (DiHRQOL) than those with parents living together (p = 0.027 and p = 0.043, respectively). Adolescent girls reported lower GeHRQOL (p = 0.041) and DiHRQOL (p = 0.001) than boys did. Parents of girls less than8 yr of age reported lower DiHRQOL (p = 0.047) than did parents of boys less than8 yr. In addition, a difference was found in HRQOL between centres. Intensive insulin therapy did not seem to lower HRQOL. If anything, along with better metabolic control, it increased HRQOL. A correlation between DiHRQOL and HbA1c was found in adolescents (r = -0.16, p=0.046) and boys aged 8-12 yr (r = -0.28, p = 0.045). We conclude that the diabetes team can influence the HRQOL of the patients as there was a centre difference and because HRQOL is influenced by glycaemic control and insulin regimen. Girls seem to need extra support.

Keyword
Children and adolescents; Diabetes type 1; Quality of life; Questionnaire
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-21221 (URN)10.1111/j.1399-5448.2008.00496.x (DOI)
Available from: 2009-09-30 Created: 2009-09-30 Last updated: 2010-09-17
3. AlC in children and adolescents with diabetes in relation to certain clinical parameters - The Swedish Childhood Diabetes Registry SWEDIABKIDS
Open this publication in new window or tab >>AlC in children and adolescents with diabetes in relation to certain clinical parameters - The Swedish Childhood Diabetes Registry SWEDIABKIDS
2008 (English)In: Diabetes Care, ISSN 0149-5992, E-ISSN 1935-5548, Vol. 31, no 5, 927-929 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE - We explored the relationship between AlC and insulin regimen, duration of diabetes, age, sex, and BMI as well as the differences between clinical mean AlC levels at pediatric diabetes clinics in Sweden. RESEARCH DESIGN AND METHODS - Data from 18,651 clinical outpatient visits (1,033 girls and 1,147 boys) at 20 pediatric clinics during 2001 and 2002 registered in the Swedish Childhood Diabetes Registry SWEDIABKIDS, a national quality registry, were analyzed. RESULTS - AlC was < 7.0% (target value similar to 8% per Diabetes Control and Complications Trial/National Glycohemoglobin Standardization Program standards) at 35% of the visits. Girls had significantly higher mean AlC than boys during adolescence. High mean AlC was correlated with high mean insulin dose, long duration of diabetes, and older age. Mean AlC varied between clinics (6.8-8.2%). Differences between centers could not be explained by differences in diabetes duration, age, BMI, or insulin dose. CONCLUSIONS - Adolescents with a high insulin dose and a long duration of diabetes, especially girls, need to be focused on, Differences in mean values between centers remained inexplicable and require further investigation.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-45890 (URN)10.2337/dc07-1863 (DOI)
Available from: 2009-10-11 Created: 2009-10-11 Last updated: 2017-12-13
4. The influence of process, structure and policy on Haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes
Open this publication in new window or tab >>The influence of process, structure and policy on Haemoglobin A1c levels in treatment of children and adolescents with type 1 diabetes
2012 (English)In: Diabetes Research and Clinical Practice, ISSN 0168-8227, E-ISSN 1872-8227, Vol. 96, no 3, 331-338 p.Article in journal (Refereed) Published
Abstract [en]

Objective: We aimed to identify factors for improvements of mean A1C at centres treating children and adolescents with diabetes.

research Design and methods: Through data from the Swedish paediatric diabetes quality registry, SWEDIABKIDS, five centres with the lowest mean A1C (Low group), five with the highest (High group), and five with the largest decrease in centre mean A1C (Decrease group) were identified. The diabetes team members completed a questionnaire, response rate 85%, (109/128) and reported team structure and process. Open-ended questions regarding messages to patients about important diabetes matters were analysed with summative content analysis.

Results: Compared to the High group, the Low and Decrease groups showed shorter professional experience and lower proportion of special diabetes-educated team members, and higher compliance with guidelines. Trends for higher mean insulin dose, larger centre size and larger team size were found. The content analysis indicated that the Low and Decrease groups gave a clear message and had lower A1C target value. The team members in these groups were engaged, had a positive attitude and a perception of a well-functioning team. The High group gave a vague message, needed more frames and had a perception of lack of cooperation in the team.

Conclusions: The team members' approach seems to affect metabolic control in children and adolescents. The team members need to be aware of their approach and how it affects patients and parents, and also of the importance of the possibility of using resources and competence within the team.

Keyword
Type 1 diabetes, pediatric, centre difference, HbA1c, summative content analysis
National Category
Pediatrics
Identifiers
urn:nbn:se:liu:diva-59312 (URN)10.1016/j.diabres.2012.01.016 (DOI)000305281100021 ()
Available from: 2010-09-13 Created: 2010-09-13 Last updated: 2017-12-12
5. Use of a web 2.0 portal to improve education and communication in young diabetes patients with families – A CASE STUDY
Open this publication in new window or tab >>Use of a web 2.0 portal to improve education and communication in young diabetes patients with families – A CASE STUDY
(English)Manuscript (preprint) (Other academic)
Abstract [en]

AIM: To develop a web portal designed to facilitate self-management, including diabetes-related information and social networking functions, and study its use and effects in young patients with diabetes.

DESIGN AND METHOD: A Web 2.0 portal was developed in collaboration with patients, parents and their practitioners. It offered communication with local practitioners, interaction with peers and access to relevant information and services. Children and adolescents with diabetes in a geographic population of two paediatric clinics in Sweden were randomized to a group (n=233) receiving passwords for access to the portal, or a control group with no access (n=230) for one year. All subjects had access during a second study year. The portal was used on users’ own initiative only without directions from health care professionals or researchers.

Measures: User activity by site visits and page visits logged per user. Health-related quality of life (HRQOL), empowerment (DES), and quality of information (QPP) questionnaires at baseline and after one and two study years. Clinical data from the Swedish paediatric diabetes quality registry SWEDIABKIDS.

RESULTS: There was a continuous flow of site visits, but decreasing in summer and Christmas periods. In 119/233 families (51%) someone visited the portal the first study year and in 169/484 (35%) the second study year. More frequent page visits were seen on social networking with peers, such as blogs, stories and discussions, followed by news from the local diabetes teams.

No differences were found regarding outcome variables between intervention and control group. No adverse effects related to the treatment or self-care were identified. A higher proportion of mothers compared to fathers visited once or more the first (p<0.001) and the second year (p<0.001). Those patients where someone in the family visited five times or more (active users), n=68, had shorter diabetes duration (p= 0.006), were younger (p=0.008), had lower HbA1c after one year of access (p=0.010), and were more often girls (p<0.001).

Conclusions: The Web 2.0 portal appears useful as a complement to traditional care for this target group. Peer interaction seems to be a valued aspect. The use of a portal probably needs to be integrated in routine care and promoted e.g. by diabetes team members, advertisements and newsletters. Research on electronic communication targeting young people with long-term health problems need to focus more on use of Web 2.0 including gender aspects.

Keyword
Type 1 diabetes, children, adolescent, e-health, patient education, intervention, metabolic control
National Category
Pediatrics
Identifiers
urn:nbn:se:liu:diva-59319 (URN)
Available from: 2010-09-13 Created: 2010-09-13 Last updated: 2010-09-17

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