Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use

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.

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Psychometric properties of health related quality of life measures in acute coronary syndrome patients

The JBI Database of Systematic Reviews and Implementation Reports ◽

10.11124/jbisrir-2016-003044 ◽

2018 ◽

Vol 16 (2) ◽

pp. 316-323 ◽

Cited By ~ 1

Author(s):

Virginia Brasil ◽

Gabriela Oliveira ◽

Katarinne Lima Moraes

Keyword(s):

Quality Of Life ◽

Acute Coronary Syndrome ◽

Psychometric Properties ◽

Health Related Quality ◽

Coronary Syndrome ◽

Quality Of Life Measures ◽

Related Quality ◽

Health Related

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Instrumentos de Medição da Qualidade de Vida em Idade Pediátrica em Cuidados Paliativos

Acta Médica Portuguesa ◽

10.20344/amp.5395 ◽

2015 ◽

Vol 28 (4) ◽

pp. 501 ◽

Cited By ~ 3

Author(s):

Joana Araújo ◽

Marília Dourado ◽

Pedro Lopes Ferreira

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Activity Level ◽

Psychomotor Development ◽

Measuring Instruments ◽

Health Related Quality ◽

Paediatric Palliative Care ◽

Related Quality ◽

Health Related

Introduction: Palliative care is closely linked to the concept of quality of life. In this work we will focus our interest on the need to assess quality of life in oncologic paediatric palliative care. Objective: To describe/compare instruments for measuring quality of life in Oncologic paediatric palliative care. Material and Methods: A literature review of the sever a instruments for measuring quality of life of children under palliative care, in English and Portuguese, between 2000 and 2013, was carried out in the recognized databases for this purpose. Results: We found fifteen measuring instruments: 10 of them were generic and 5 specific. For each instrument the country of origin, the target age group, fill manner, number of evaluated dimensions, description of dimensions, and number of questions, psychometric properties and validation for the Portuguese language were identified. Discussion: There has been a growing concern in measuring quality of life in pediatric age. Most measuring instruments were designed, in the United States, after 1994, coinciding with the World Health Organization definition of quality of life. As regards to age, most of the instruments were developed for children aged eight or more years old and there is no one to be answered only by the child. We can see that the majority of measuring instruments, namely the most current, seeking to involve the child in evaluating his/her own health related quality of life through auto-population (n = 10). However, there is still a substantial dependence on parents for the measurement of health related quality of life of their children, despite studies demonstrates differences between the child and parents, on perception of health related quality of life. But, since many children are not able to provide data on health related quality of life either due to their age or because they are ill or with functional incapacity, the only possibility to get information about the health related quality of life of these children is to appeal to parents, who are asked to reflect on the lack of their child, or teenager. Thus full completion by parents of some measuring instruments may be justified. In Pediatrics measuring instruments of health related quality of life are multidimensional, often intended to measure the subjective point of view in relation to the impact of the disease and the treatment have on the physical, psychological and social well-being. Thus, the wide range of dimensions, the differences in number of dimensions and the number of questions between the various instruments tend to reflect the different stages of psychomotor development of the target population. Conclusion: The most commonly measure dimensions were physical ability, emotional/psychological impact, social and at school impact, followed by pain and discomfort and activity level. The majority of instruments are designed for children aged over 8 years. A large number of the questionnaires are self-completion questionnaires. Others can be completed by parents. Most of the instruments tested their internal coherence (n = 9) and, in a small number, the test-retest reproducibility (n = 7) and agreement among observers (n = 2). Most of the questionnaires reported their content validity (n = 10) and construct validity (n = 9), few have examined the validity of criterion (n = 2). Considering the examined instruments, six questionnaires are validated for the Portuguese population (five generic and one specific for oncologic disease).

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