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Using health-related quality of life instruments for children with long-term conditions: On the basis of a national quality registry system
Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare , 2016. , 101 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 77
Keyword [en]
outpatient setting; patient perspectives; patient reported outcomes; biopsychosocial perspective; self-reports; child involvement; International Classification of Functioning Disability and Health version for Children and Youth
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-34144ISBN: 978-91-85835-76-8 (print)OAI: oai:DiVA.org:hj-34144DiVA: diva2:1051377
Public defence
2017-01-20, Forum Humanum, School of Health and Welfare, Jönköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2016-12-15 Created: 2016-12-01 Last updated: 2016-12-01Bibliographically approved
List of papers
1. Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)
Open this publication in new window or tab >>Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)
2013 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 11, no 1, 1-10 p., 75Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-21195 (URN)10.1186/1477-7525-11-75 (DOI)000318730800001 ()23642162 (PubMedID)2-s2.0-84876960252 (Scopus ID)
Available from: 2013-05-18 Created: 2013-05-18 Last updated: 2016-12-01Bibliographically approved
2. Impact of type 1 diabetes on health-related quality of life among 8–18-year-old children
Open this publication in new window or tab >>Impact of type 1 diabetes on health-related quality of life among 8–18-year-old children
Show others...
2016 (English)In: Comprehensive Child and Adolescent Nursing, ISSN 2469-4193, Vol. 39, no 4, 245-255 p.Article in journal (Refereed) Published
Abstract [en]

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.

Keyword
Assessment, Chronic condition, Metabolic control, Quality of life
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-31548 (URN)10.1080/24694193.2016.1196265 (DOI)000390811100002 ()2-s2.0-84987870737 (Scopus ID)
Available from: 2016-08-26 Created: 2016-08-26 Last updated: 2017-01-20Bibliographically approved
3. Children's experiences about a structured assessment of health-related quality of life during a patient encounter
Open this publication in new window or tab >>Children's experiences about a structured assessment of health-related quality of life during a patient encounter
2016 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 42, no 3, 424-432 p.Article in journal (Refereed) Published
Abstract [en]

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.

Keyword
childrens' views; chronic (health) condition; qualitative; quality of life; research methods
National Category
Pediatrics
Identifiers
urn:nbn:se:hj:diva-29951 (URN)10.1111/cch.12324 (DOI)26888733 (PubMedID)2-s2.0-84963812018 (Scopus ID)
Available from: 2016-05-18 Created: 2016-05-18 Last updated: 2016-12-01Bibliographically approved
4. To promote child involvement – healthcare professionals use of an health-related quality of life assessment tool during pediatric encounters
Open this publication in new window or tab >>To promote child involvement – healthcare professionals use of an health-related quality of life assessment tool during pediatric encounters
Show others...
2016 (English)In: European Journal for Person Centered Healthcare, ISSN 2052-5648, E-ISSN 2052-5656Article in journal (Refereed) In press
Abstract [en]

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.

National Category
Pediatrics
Identifiers
urn:nbn:se:hj:diva-34143 (URN)
Available from: 2016-12-01 Created: 2016-12-01 Last updated: 2016-12-10

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