PMID- 30761692
OWN - NLM
STAT- MEDLINE
DCOM- 20210728
LR  - 20210728
IS  - 1365-2753 (Electronic)
IS  - 1356-1294 (Linking)
VI  - 26
IP  - 1
DP  - 2020 Feb
TI  - Longitudinal assessment of exercise capacity and quality of life outcome measures 
      in cystic fibrosis: A year-long prospective pilot study.
PG  - 236-241
LID - 10.1111/jep.13105 [doi]
AB  - BACKGROUND: Multiple outcomes measures including exercise capacity and quality of 
      life are necessary to get complete and accurate picture of cystic fibrosis (CF) 
      progression. In this pilot study, we investigated these measures in CF 
      longitudinally for a year to determine (a) minimal clinically important 
      difference (MCID) for 6-minute walk distance (6MWD) and CF Health-Related Quality 
      of Life Questionnaire (CFQ-R) domains and (b) how 6MWD, CFQ-R, and spirometry 
      change during times of exacerbation and baseline health and their relationship 
      among each other. METHODS: Subjects with moderate and severe CF (baseline FEV(1) 
      less than 70% predicted) at Akron Children's Hospital CF centre were followed for 
      a full year longitudinally. All three tests (6MWT, CFQ-R, and spirometry) were 
      done during each outpatient visit and weekly during inpatient admission. MCID was 
      estimated for these parameters using distribution-based methods. Finally, data 
      were examined visually using longitudinal graphs for each subject. RESULTS: 
      Twelve CF subjects (eight [67%] males and age range 13-46 years) were followed 
      for a full year resulting in at least four encounters per subject. 6MWD (m) and 
      CFQ-R respiratory had an MCID of 33 m and 7.3, respectively. MCIDs for FEV(1) 
      (percentage predicted) and CFQ-R physical were 7.1 and 11.4, respectively. The 
      longitudinal evaluation of multiple outcome measures during periods of disease 
      exacerbation and baseline health showed that these parameters did not appear to 
      change in accordance with each other. CONCLUSION: In this pilot study, MCIDs for 
      6MWD and CFQ-R domains were calculated for the first time to facilitate their use 
      as additional outcome measures in CF. The disparity among multiple outcome 
      measures highlights that these measures together may provide a more complete 
      picture in CF than any single measure alone.
CI  - (c) 2019 John Wiley & Sons, Ltd.
FAU - Bhatia, Rajeev
AU  - Bhatia R
AUID- ORCID: 0000-0002-2848-5519
AD  - Department of Pediatrics, Division of Pulmonology, Akron Children's Hospital, 
      Akron, Ohio.
FAU - Kaye, Melissa
AU  - Kaye M
AD  - Department of Pediatrics, Division of Pulmonology, Akron Children's Hospital, 
      Akron, Ohio.
FAU - Roberti-Miller, Adria
AU  - Roberti-Miller A
AD  - Department of Pediatrics, Division of Pulmonology, Akron Children's Hospital, 
      Akron, Ohio.
LA  - eng
GR  - Akron Children's Hospital Research Foundation/
PT  - Journal Article
DEP - 20190213
PL  - England
TA  - J Eval Clin Pract
JT  - Journal of evaluation in clinical practice
JID - 9609066
SB  - IM
MH  - Adolescent
MH  - Adult
MH  - Child
MH  - *Cystic Fibrosis
MH  - Exercise Test
MH  - Exercise Tolerance
MH  - Humans
MH  - Male
MH  - Middle Aged
MH  - Outcome Assessment, Health Care
MH  - Pilot Projects
MH  - Prospective Studies
MH  - *Quality of Life
MH  - Young Adult
OTO - NOTNLM
OT  - 6-minute walk test
OT  - CF Health-Related Quality of Life Questionnaire
OT  - cystic fibrosis
OT  - minimal clinically important difference
OT  - spirometry
EDAT- 2019/02/15 06:00
MHDA- 2021/07/29 06:00
CRDT- 2019/02/15 06:00
PHST- 2018/11/14 00:00 [received]
PHST- 2019/01/04 00:00 [revised]
PHST- 2019/01/07 00:00 [accepted]
PHST- 2019/02/15 06:00 [pubmed]
PHST- 2021/07/29 06:00 [medline]
PHST- 2019/02/15 06:00 [entrez]
AID - 10.1111/jep.13105 [doi]
PST - ppublish
SO  - J Eval Clin Pract. 2020 Feb;26(1):236-241. doi: 10.1111/jep.13105. Epub 2019 Feb 
      13.