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

Coombes, Lucy; Wiseman, Theresa; Lucas, Grace; Sangha, Amrit; Murtagh, Fliss E.M.

doi:10.1177/0269216316649155

Cited by 64 publications

(72 citation statements)

References 68 publications

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“…74,114 Parents of young people report a common range of behaviours in their children: anti-social, disobedient, unwilling to take medication, creating difficulties in incorporating daily medication into their routine schedules, and pill burden associated distress. 40,44,53,86,105,108,117 Adolescents (aged [12][13][14][15][16][17][18] and made it alien to them; some have cited memories of fear that could not be forgotten. 63 Hospitalisation, for treatment, is associated with isolation, affecting opportunities for interaction with friends and siblings, and invoking emotions of sadness, and homesickness.…”

Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

“…Measurement of HRQOL will enable those developing and evaluating services to determine their effectiveness. 15 Furthermore, it can enable improvements in clinical care, research, and informed decision making. 16 Currently, there is no appropriate outcome assessment measure for use in paediatric palliative care.…”

Section: Introductionmentioning

confidence: 99%

“…16 Currently, there is no appropriate outcome assessment measure for use in paediatric palliative care. 15 In order to develop outcome assessment measures it is essential to understand the perspectives of the population in which they will be used. 17 At present, there is limited reporting on the needs and experiences of young people with LLC.…”

Section: Introductionmentioning

confidence: 99%

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Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

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Background: The design and provision of quality paediatric palliative care should prioritize issues that matter to children and their families, for optimal outcomes. Aim: This review aims to identify symptoms concerns and outcomes, that matter to children and young development of a relevant framework of health outcomes. Study Design: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources: Data sources such as PsychINFO, Medline, EMBASE, CINAHL, OpenGrey, and Science Direct Journals have been searched from 1 August 2016 to 30th July 2017. The study also incorporates consultations with experts in the field, citation searchers via Scopus, and a hand search for reference lists of included studies. Results: Out of the 13,567 articles that have been evaluated, 81 studies were included. Of these, (n=68) are from high-income countries and (n=58) are cancer patients studies. A total of 3,236 young people, 2,103 family carers, 108 families, and 901 healthcare providers are included in the studies. Young people have not contributed to data in 30% of studies. Themes on priority concerns are presented by domain and health outcome; for example, 1) Physical (n=62 studies); e.g. physical symptoms, 2) psychological (n=65); e.g. worry 3) psycho-social (n=31); e.g. relationships, 4) existential Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory, so paediatric palliative care should not be limited to the end of life phase. A child-family centred framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future

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Section: Psychological (N=65 Studies 80%)mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

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“…A recent systematic review 111 of PPC outcomes concluded that there were no ideal outcome assessment measures for PPC that consistently captured its impact or value. Furthermore, translation of adult-centred measures to paediatric populations is problematic; many adult metrics (eg, assigning of durable power of attorney) are irrelevant in paediatrics, and child and family experiences and psychosocial needs are distinct.…”

Section: The Next Generation Of Ppc Oncology Investigationmentioning

confidence: 99%

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

Rosenberg

Wolfe

2017

The Lancet Child & Adolescent Health

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Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent–provider concordance with regards to prognosis, as well as the need for bereavement supports. The second decade expanded PPC oncology investigation to include the entire cancer continuum and the voices of patients. Other studies identified the need for support of parents, siblings, and racial and ethnic minority groups. Promising interventions designed to improve outcomes were tested in randomised clinical trials. Future research will build on these findings and pose novel questions about how to continue to reduce the burdens of paediatric cancer.

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“…We read with great interest the recent review of outcome measures in paediatric palliative care (1). This publication in Palliative Medicine is an essential step in advancing the science for this underserved and understudied population.…”

Section: Dear Editorsmentioning

confidence: 99%

Outcome Measurement for Children and Young People

Harding

Wolfe

Baker

2017

Journal of Palliative Medicine

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

Cited by 64 publications

References 68 publications

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

Outcome Measurement for Children and Young People

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