Challenges and 'obstacles': reframing our perspective on the transition into adulthood for young people with life-limiting and life-threatening conditions

Title

Challenges and 'obstacles': reframing our perspective on the transition into adulthood for young people with life-limiting and life-threatening conditions

Creator

Pritchard AW; Rees SA

Publisher

Journal of the Royal College of Physicians of Edinburgh

Date

2016

Subject

Patient Transfer; Acute Disease; Adolescent; Humans; Young Adult

Description

BACKGROUND: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. AIM: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties. DESIGN: A systematic literature review and analysis of psychometric properties. DATA SOURCES: PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed. RESULTS: From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly. CONCLUSION: There is currently no 'ideal' outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

June 2018 List

Collection

Citation

Pritchard AW; Rees SA, “Challenges and 'obstacles': reframing our perspective on the transition into adulthood for young people with life-limiting and life-threatening conditions,” Pediatric Palliative Care Library, accessed July 19, 2018, https://pedpalascnetlibrary.omeka.net/items/show/15167.

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