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Increasing response rate in data registration and follow-up of type 1 diabetes children and adolescents: A prospective population study 1992–97
Linköping University, Department of Clinical and Experimental Medicine, Child and Adolescent Psychiatry . Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Child and Adolescent Psychiatry.
Linköping University, Department of Medicine and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Clinical and Experimental Medicine, Pediatrics . Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre of Paediatrics and Gynecology and Obstetrics, Department of Paediatrics in Linköping.
1999 (English)In: Practical Diabetes International, ISSN 1357-8170, Vol. 16, no 4, 101-106 p.Article in journal (Refereed) Published
Abstract [en]

Aims: This study considers how a local diabetes team can develop a system for patient data registration and follow-up to enhance quality control and health economic analysis, and how a high response rate for patient data can be achieved.

Patients and methods: A geographic population of yearly 120-130 intensively treated type 1 diabetes children. <19 years of age was studied. A prospective patient questionnaire monitored: blood glucose and urine testing, insulin doses, acute complications, medications for hypertension and epilepsy, tobacco and snuff use, and any open questions and needs of the patient. This was completed before every visit to the out-patient department and used as a database for consultation. Data were thereafter registered in regular computer software, and analysed on a yearly basis.

Results: Response rate increased with time to near 100%. There was a time gain for diabetes nurse and physician. Many patients found the questionnaire good for overviewing treatment and easy to complete, whereas some found it was irksome and boring. The total cost of the method was <160 SEK/patient year.

Conclusions: A very high patient data response rate can be achieved over years by a patientsupportive questionnaire integrated in the treatment program. Treatment and outcome analysis can then be performed locally at low costs. The combination of a patient questionnaire with regular hard- and software is easy to create, manage and develop. Benefits for diabetes team and patients exceed the total cost.

Place, publisher, year, edition, pages
1999. Vol. 16, no 4, 101-106 p.
Keyword [en]
adolescent, child, data registration, information system, evaluation, questionnaire, health economy, quality of life, diabetes mellitus
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-13554DOI: 10.1002/pdi.1960160406OAI: oai:DiVA.org:liu-13554DiVA: diva2:20946
Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2009-08-20
In thesis
1. On Severe Hypoglycaemia in Children and Adolescents with Type 1 Diabetes
Open this publication in new window or tab >>On Severe Hypoglycaemia in Children and Adolescents with Type 1 Diabetes
2000 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: For people with type 1 diabetes, there is no alternative to treatment with insulin. The major side effect of insulin is severe hypoglycaemia (SH), when the patient needs help or even becomes unconscious.

Material: We have studied a geographic population of yearly 130-140 unselected type 1 diabetes patients aged 1-18 years during 1992-1999. They were intensively treated with 87-96% on 4-7 daily insulin doses, combined with active self-control, psychosocial support and problem-based education from onset. Average HbA1c was 6.5 with Mono-S standard (1.15% beow DCCT level).

Methods: We evaluated use of a prospective patient questionnaire for continuous long-term registration of treatment and outcome data and analysed HbA1c, SH and other variables. Over years, 95-100% response rate was achieved. We used also temporary questionnaries.

Results: We found SH with unconsciousness reported from on average 11% of patients yearly, SH without unconsciousness but needing assistance from on average 36% yearly and weak associations to HbA1c, such as reletive risk of SH 1.24 for yearly mean HbA1c <7.0% compared to ≥7.0% There was a seasonal variation in HbA1c (p=0.023) and incidence of SH. The strongest predictor for SH was SH during the previous year (r=9.38, p<0.0001).

The impact from SH showed great variation, and 20-30% of events led to practical disturbancies for parents and/or other people. Hospital visits took place only at 5% and hospitalisations at 3% of events. Social activities for patients were cancelled after 10% of events. Increased worry for patients was reported after 8% of events, bad sleep after 7%. We estimated the average socio-economic cost for SH at EURO 239 per event of SH with unconsciousness, and EURO 63 per event of SH without unconsciousness but needing assistance.

Mass-distributed self-study material (brochures and videos) aimed at the prevention of SH without compromising metabolic control reached high dissemination and was widely appreciated by patients. The material copy cost was only EURO 7 per patient. It also seems to have contributed to a decrease in SH with unconsciousness from yearly 13% of patients before to 9% after intervention (3-years average), but controlled studies are needed.

Conclusions: We conclude that SH remains a very serious problem of multifactorial aethiology. It causes considerable discomfort and costs. Systematic patient education mgiht reduce the incidence. Interventions using mass-distribution of high quality self-study material such as videos and brochures seem to have a potential to be cost-effective. There is a great patient/consumer interest in high quality- and advanced information/education materials.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2000. 67 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 648
Keyword
Severe hypoglycaemia, SH, diabetes, insulin, HbA1c, aethiology
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-5018 (URN)91-7219-749-8 (ISBN)
Public defence
(English)
Available from: 2000-11-29 Created: 2000-11-29 Last updated: 2012-01-24Bibliographically approved

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Nordfeldt, SamJonsson, DickLudvigsson, Johnny

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Child and Adolescent Psychiatry Faculty of Health SciencesDepartment of Child and Adolescent PsychiatryHealth Technology AssessmentPediatrics Department of Paediatrics in Linköping
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