Children's experiences about a structured assessment of health‐related quality of life during a patient encounter

Petersson, Christina; Huus, Karina; Åkesson, Karin; Enskär, Karin

doi:10.1111/cch.12324

Cited by 14 publications

(16 citation statements)

References 54 publications

(91 reference statements)

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“…Health Related Quality of Life (HRQoL) is a multidimensional construct which attempts to assess the individual’s own perceptions of the impact of the illness and/or its management on physical, and psychosocial functioning. 5 , 6 Several investigators have devised questionnaires to assess HRQoL in children with chronic diseases, but the need to create a consensus instrument mounted over the years. In 2001, Dr. James Varni introduced the PedsQL 4.0 generic core scale to measure the essential core functioning for pediatric HRQoL in 4 main domains including physical, emotional, school and social functioning.…”

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confidence: 99%

Factors affecting quality of life in children and adolescents with thalassemia in Iraqi Kurdistan

Mikael

Al-Allawi

2018

SMJ

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Objectives:To assess the health related quality of life (HRQoL) in Iraqi Kurd children and adolescents with thalassemia, and identify the factors that affect it.Methods:In the period between May and June 2018, 100 thalassemic patients and 100 healthy subjects between the ages of 6-18 years were enrolled. The patients included 73 with thalassemia major (TM) and 27 with intermedia (TI). Patients were clinically re-evaluated, and the pediatric quality of life inventory (PedsQL) 4.0 was administered by both child and parent reports.Results:The mean HRQoL score of thalassemic patients was significantly lower than that of healthy subjects, with lowest scores in physical functioning. Furthermore, the mean HRQoL of TM was significantly lower than that of TI subgroup. Significantly lower mean HRQoL scores were seen in those taking ≥6 transfusions/year, with hepatitis C infection, with illiterate parents, and those on oral iron chelation. Pearson correlation revealed that HRQoL was negatively associated with age, frequency of transfusions, and serum ferritin, but positively correlated with age at starting transfusion and age at diagnosis. Only age and serum ferritin remained significant by multivariate analysis.Conclusion:This study shows that among Iraqi Kurds with thalassemia, the disease has a significant negative impact on quality of life, with age and serum ferritin being identified as independent predictors. Psychosocial, educational, and patient-centered management programs may be needed to improve HRQoL in this disease.

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confidence: 99%

Factors affecting quality of life in children and adolescents with thalassemia in Iraqi Kurdistan

Mikael

Al-Allawi

2018

SMJ

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“…This is something that has been encouraged by the national initiative, but a lot remains to be done. During patient consultation, clinical measures are complemented with patient dependent measures providing opportunities for a shared and more holistic overview of the patient’s health status, which can facilitate patient interaction and co-production of care [ 3 , 29 ]. It will, however, depend on whether patients are invited to participate and able to engage.…”

Section: Discussionmentioning

confidence: 99%

One size fits none – a qualitative study investigating nine national quality registries’ conditions for use in quality improvement, research and interaction with patients

Sparring

Granström

Sachs

et al. 2018

BMC Health Serv Res

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BackgroundSwedish National Quality Registries (NQRs) are observational clinical registries that have long been seen as an underused resource for research and quality improvement (QI) in health care. In recent years, NQRs have also been recognised as an area where patients can be involved, contributing with self-reported experiences and estimations of health effects. This study aimed to investigate what the registry management perceived as barriers and facilitators for the use of NQRs in QI, research, and interaction with patients, and main activities undertaken to enhance their use for these purposes. The aim was further to identify potential differences between various types of NQRs for their use in these areas.MethodsIn this multiple case study, nine NQRs were purposively selected. Interviews (n = 18) were conducted and analysed iteratively using conventional and directed content analysis.ResultsA recent national investment initiative enabled more intensive work with development areas previously identified by the NQR management teams. The recent focus on value-based health care and other contemporary national healthcare investments aiming at QI and public benchmarking were perceived as facilitating factors. Having to perform double registrations due to shortcomings in digital systems was perceived as a barrier, as was the lack of authority on behalf of the registry management to request participation in NQRs and QI activities based on registry outcomes. The registry management teams used three strategies to enhance the use of NQRs: ensuring registering of correct and complete data, ensuring updated and understandable information available for patients, clinicians, researchers and others stakeholders, and intensifying cooperation with them. Varied characteristics of the NQRs influenced their use, and the possibility to reach various end-users was connected to the focus area and context of the NQRs.ConclusionsThe recent national investment initiative contributed to already ongoing work to strengthen the use of NQRs. To further increase the use, the demands of stakeholders and end-users must be in focus, but also an understanding of the NQRs’ various characteristics and challenges. The end-users may have in common a need for training in the methodology of registry based research and benchmarking, and how to be more patient-centred.

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“…Routine surveillance programmes (incorporating standardised assessments) for children with cerebral palsy have demonstrated improved bio-mechanical and pain outcomes [49,68]. Individualized client-centred tools such as DISABKIDS Chronic Generic Measure and Canadian Occupational Performance Measure have been associated with increased motivation with activity-focused interventions and improved therapy practice [63,61]. Further research however, is warranted to demonstrate if inclusion of appropriately selected evidence-based assessment tools adds more to enablement of the child and family, than informal and observational assessments only.…”

Section: Discussionmentioning

confidence: 99%

Understanding allied health practitioners’ use of evidence-based assessments for children with cerebral palsy: a mixed methods study

O’Connor

Kerr

Shields

et al. 2017

Disability and Rehabilitation

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Children's experiences about a structured assessment of health‐related quality of life during a patient encounter

Abstract: 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.

Cited by 14 publications

References 54 publications

Factors affecting quality of life in children and adolescents with thalassemia in Iraqi Kurdistan

Factors affecting quality of life in children and adolescents with thalassemia in Iraqi Kurdistan

One size fits none – a qualitative study investigating nine national quality registries’ conditions for use in quality improvement, research and interaction with patients

Understanding allied health practitioners’ use of evidence-based assessments for children with cerebral palsy: a mixed methods study

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