Match!

“Forewarned and forearmed”: Long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care

Published on Feb 1, 2017in Patient Education and Counseling2.82
· DOI :10.1016/j.pec.2016.09.013
Janine Vetsch8
Estimated H-index: 8
(UNSW: University of New South Wales),
Joanna E. Fardell14
Estimated H-index: 14
(UNSW: University of New South Wales)
+ 7 AuthorsRichard J. Cohn28
Estimated H-index: 28
(UNSW: University of New South Wales)
View in Source
Abstract
Abstract Objective This mixed-method study assessed 1) survivors’ and parents’ information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics. Methods Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics. Results Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD = 7.9; time since diagnosis: 19.7years, SD = 8.8) and 163 parents (child age: 12.9years, SD = 2.4; time since diagnosis: 9.7years, SD = 2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p = 0.001), dissatisfaction with follow-up care (p = 0.003), lower overall health (p = 0.014), higher perceived risk of late effects (p  Conclusion Unmet information needs were common for survivors and parents of CCS. Practice implications Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.
  • References (36)
  • Citations (29)
References36
Newest
#1Chiara MagniH-Index: 18
#2Chiara SegrèH-Index: 1
Last.Andrea FerrariH-Index: 113
view all 12 authors...
10 CitationsSource
#1Cheryl L. Cox (St. Jude Children's Research Hospital)H-Index: 22
#2Liang Zhu (St. Jude Children's Research Hospital)H-Index: 14
Last.L. L. Robison (St. Jude Children's Research Hospital)H-Index: 11
view all 8 authors...
13 CitationsSource
#1Mikkel Allingstrup (Rigshospitalet)H-Index: 4
#2Jørn Wetterslev (Copenhagen University Hospital)H-Index: 62
Last.Arash Afshari (Cochrane Collaboration)H-Index: 14
view all 5 authors...
76 CitationsSource
#1Hermann Faller (University of Würzburg)H-Index: 32
#2Uwe Koch (UHH: University of Hamburg)H-Index: 36
Last.Anja Mehnert (UHH: University of Hamburg)H-Index: 32
view all 16 authors...
58 CitationsSource
#1Hanne C. Lie (University of Oslo)H-Index: 8
#2Jon Håvard Loge (University of Oslo)H-Index: 49
Last.Arnstein Finset (University of Oslo)H-Index: 39
view all 8 authors...
16 CitationsSource
#1Janine VetschH-Index: 8
#2Corina S. RueeggH-Index: 15
Last.Gisela MichelH-Index: 24
view all 6 authors...
26 CitationsSource
#1Brooke ChervenH-Index: 3
#2Ann C. Mertens (Emory University)H-Index: 50
Last.Karen Wasilewski-Masker (Emory University)H-Index: 16
view all 6 authors...
24 CitationsSource
#1Meagan BrennanH-Index: 17
#2J F GormallyH-Index: 1
Last.Andrew J. SpillaneH-Index: 36
view all 5 authors...
95 CitationsSource
#1Pierre Pluye (McGill University)H-Index: 29
#2Quan Nha Hong (McGill University)H-Index: 12
295 CitationsSource
#1Micòl E. Gianinazzi (University of Bern)H-Index: 9
#2Stefan Essig (University of Bern)H-Index: 8
Last.Gisela Michel (University of Bern)H-Index: 24
view all 7 authors...
35 CitationsSource
Cited By29
Newest
#1Teolinda Toft (Uppsala University)
#2Sven Alfonsson (KI: Karolinska Institutet)H-Index: 9
Last.Tommy Carlsson (Uppsala University)H-Index: 5
view all 4 authors...
Source
#1Bas VaarwerkH-Index: 2
#2P. F. Limperg (UvA: University of Amsterdam)
Last.Martha A. GrootenhuisH-Index: 47
view all 5 authors...
Source
#1Victoria C. Simensen (Oslo University Hospital)
#2Knut B. Smeland (Oslo University Hospital)H-Index: 6
Last.Alexander Fosså (Oslo University Hospital)H-Index: 24
view all 8 authors...
Source
#1Janine Vetsch (UNSW: University of New South Wales)H-Index: 8
#2Claire E. Wakefield (UNSW: University of New South Wales)H-Index: 24
Last.Richard J. Cohn (UNSW: University of New South Wales)H-Index: 28
view all 8 authors...
Source
#1Tommy Carlsson (Uppsala University)H-Index: 5
#2Laura Kukkola (Uppsala University)H-Index: 1
Last.Louise von Essen (Uppsala University)H-Index: 33
view all 5 authors...
Source
#1David Mizrahi (UNSW: University of New South Wales)H-Index: 5
#2Joanna E. Fardell (UNSW: University of New South Wales)H-Index: 14
Last.Richard J. Cohn (UNSW: University of New South Wales)H-Index: 28
view all 7 authors...
Source
#1Jennifer L. Lee (Emory University)H-Index: 9
#2Ana M. Gutierrez-Colina (UGA: University of Georgia)H-Index: 8
Last.Jordan Gilleland Marchak (Emory University)H-Index: 6
view all 7 authors...
1 CitationsSource
#1Lauren Kelada (UNSW: University of New South Wales)H-Index: 5
#2Claire E. Wakefield (UNSW: University of New South Wales)H-Index: 24
Last.Richard J. Cohn (UNSW: University of New South Wales)H-Index: 28
view all 10 authors...
Source
#1Christina Signorelli (UNSW: University of New South Wales)H-Index: 6
#2Claire E. Wakefield (UNSW: University of New South Wales)H-Index: 24
Last.Richard J. Cohn (UNSW: University of New South Wales)H-Index: 28
view all 8 authors...
Source
#1Janine Vetsch (Boston Children's Hospital)H-Index: 8
#2Brittany C. McGill (Boston Children's Hospital)H-Index: 5
Last.Claire E. Wakefield (Boston Children's Hospital)H-Index: 24
view all 7 authors...
Source