PMID- 28956672
OWN - NLM
STAT- MEDLINE
DCOM- 20191028
LR  - 20191028
IS  - 1557-7740 (Electronic)
IS  - 1557-7740 (Linking)
VI  - 21
IP  - 2
DP  - 2018 Feb
TI  - Proxy-Reported Quality of Life and Family Impact for Children Followed 
      Longitudinally by a Pediatric Palliative Care Team.
PG  - 241-244
LID - 10.1089/jpm.2017.0092 [doi]
AB  - BACKGROUND: One goal of pediatric palliative care is to maintain quality of life 
      for children and their families. Quality-of-life investigations may be enhanced 
      by considering clinically important metrics in addition to statistical 
      significance. OBJECTIVE: The purpose of this study was to longitudinally evaluate 
      the effect of time on quality of life and family impact for pediatric palliative 
      care patients across all diagnoses and ages. DESIGN: This prospective 
      quality-of-life study included administration of a 23-item PedsQL Measurement 
      Model to evaluate for physical, emotional, social, and cognitive dimensions of 
      the child's quality of life and a 36-item PedsQL Family Impact Module to assess 
      for the familial impact at time of initial palliative care consultation, Month 6, 
      and Month 12. SETTING/SUBJECTS: All pediatric patients who received a palliative 
      care consultation in our Midwestern free-standing children's hospital over a 
      five-year period were included in the longitudinal study (n = 87). MEASUREMENTS: 
      Repeated measures ANOVA was used to investigate how proxy-reported quality of 
      life and family impact changed with time with attentiveness to also follow trends 
      in minimal clinically important difference (MCID) metrics. RESULTS: The emotional 
      domain showed a statistically significant positive trend over the first six 
      months of palliative care involvement (p = 0.049), while the physical domain 
      (p = 0.028) and daily activity (p = 0.039) showed a positive improvement for the 
      full year. In using a standard of MCID, the physical, emotional, and cognitive 
      domains improved in the quality-of-life scale and the communication, worry, and 
      daily activity domains improved in the family impact scale over 12 months. 
      CONCLUSIONS: In considering quality-of-life analyses for pediatric palliative 
      care programmatic improvements, providers may consider analyzing not only for 
      statistical significance in collective data sets but also for clinically 
      important difference over time.
FAU - Weaver, Meaghann
AU  - Weaver M
AD  - 1 Division of Pediatric Palliative Care, Children's Hospital and Medical Center 
      Omaha , Omaha, Nebraska.
FAU - Wichman, Christopher
AU  - Wichman C
AD  - 2 Department of Biostatistics, University of Nebraska Medical Center , Omaha, 
      Nebraska.
FAU - Darnall, Cheryl
AU  - Darnall C
AD  - 1 Division of Pediatric Palliative Care, Children's Hospital and Medical Center 
      Omaha , Omaha, Nebraska.
FAU - Bace, Sue
AU  - Bace S
AD  - 1 Division of Pediatric Palliative Care, Children's Hospital and Medical Center 
      Omaha , Omaha, Nebraska.
FAU - Vail, Catherine
AU  - Vail C
AD  - 1 Division of Pediatric Palliative Care, Children's Hospital and Medical Center 
      Omaha , Omaha, Nebraska.
FAU - MacFadyen, Andrew
AU  - MacFadyen A
AD  - 1 Division of Pediatric Palliative Care, Children's Hospital and Medical Center 
      Omaha , Omaha, Nebraska.
AD  - 3 Division of Pediatric Critical Care, Children's Hospital and Medical Center 
      Omaha , Omaha, Nebraska.
LA  - eng
PT  - Journal Article
DEP - 20170928
PL  - United States
TA  - J Palliat Med
JT  - Journal of palliative medicine
JID - 9808462
SB  - IM
MH  - Activities of Daily Living/*psychology
MH  - *Adaptation, Psychological
MH  - Adolescent
MH  - Adult
MH  - Child
MH  - Child, Preschool
MH  - Female
MH  - Humans
MH  - Infant
MH  - Infant, Newborn
MH  - Longitudinal Studies
MH  - Male
MH  - Midwestern United States
MH  - Palliative Care/*psychology/*statistics & numerical data
MH  - Parents/*psychology
MH  - Pediatrics/*statistics & numerical data
MH  - Prospective Studies
MH  - Quality of Life/*psychology
MH  - Stress, Psychological
MH  - Surveys and Questionnaires
MH  - Time Factors
OTO - NOTNLM
OT  - patient/proxy-reported outcomes
OT  - pediatric palliative care
OT  - quality of life
EDAT- 2017/09/29 06:00
MHDA- 2019/10/29 06:00
CRDT- 2017/09/29 06:00
PHST- 2017/09/29 06:00 [pubmed]
PHST- 2019/10/29 06:00 [medline]
PHST- 2017/09/29 06:00 [entrez]
AID - 10.1089/jpm.2017.0092 [doi]
PST - ppublish
SO  - J Palliat Med. 2018 Feb;21(2):241-244. doi: 10.1089/jpm.2017.0092. Epub 2017 Sep 
      28.