The Seattle Pediatric Palliative Care Project: Effects on Family Satisfaction and Health-Related Quality of Life

2006 ◽  
Vol 9 (3) ◽  
pp. 716-728 ◽  
Author(s):  
Ross M. Hays ◽  
Jeanette Valentine ◽  
Gerri Haynes ◽  
J. Russel Geyer ◽  
Nanci Villareale ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Satisfaction ◽  
Pediatric Palliative Care ◽  
Health Related Quality ◽  
Care Project ◽  
Related Quality ◽  
Health Related

Health Status and Health-Related Quality of Life in a Pediatric Palliative Care Program

2012 ◽  
Vol 15 (7) ◽  
pp. 790-797 ◽  
Author(s):  
Caprice Knapp ◽  
Vanessa Madden ◽  
Dennis Revicki ◽  
David Feeny ◽  
Hua Wang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Health Status ◽  
Care Program ◽  
Pediatric Palliative Care ◽  
Palliative Care Program ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

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

2016 ◽  
Vol 30 (10) ◽  
pp. 935-949 ◽  
Author(s):  
Lucy H Coombes ◽  
Theresa Wiseman ◽  
Grace Lucas ◽  
Amrit Sangha ◽  
Fliss EM Murtagh
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Psychometric Properties ◽  
Outcome Measures ◽  
Health Related Quality ◽  
Paediatric Palliative Care ◽  
Quality Of Life Measures ◽  
Related Quality ◽  
Health Related

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.

Characteristics and implications of attrition in health-related quality of life studies in palliative care

2009 ◽  
Vol 23 (5) ◽  
pp. 432-440 ◽  
Author(s):  
M Ahlner-Elmqvist ◽  
K Bjordal ◽  
MS Jordhøy ◽  
S Kaasa ◽  
M Jannert
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related
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