Perceived cancer-related pain and fatigue, information needs, and fear of cancer recurrence among adult survivors of childhood cancer

L Kelada; C E Wakefield; L C Heathcote; T Jaaniste; C Signorelli; J E Fardell; M Donoghoe; M C McCarthy; M Gabriel; R J Cohn; ANZCHOG survivorship study group

doi:10.1016/j.pec.2019.06.022

Perceived cancer-related pain and fatigue, information needs, and fear of cancer recurrence among adult survivors of childhood cancer

Patient Educ Couns. 2019 Dec;102(12):2270-2278. doi: 10.1016/j.pec.2019.06.022. Epub 2019 Jun 26.

Authors

Affiliations

¹ School of Women's and Children's Health, UNSW Sydney, Kensington, Australia; Kids Cancer Centre, Sydney Children's Hospital, High Street, Randwick, Australia. Electronic address: l.kelada@unsw.edu.au.
² School of Women's and Children's Health, UNSW Sydney, Kensington, Australia; Kids Cancer Centre, Sydney Children's Hospital, High Street, Randwick, Australia.
³ Department of Anesthesiology, Perioperative, and Pain Medicine, Stanford University Medical School, Palo Alto, USA.
⁴ School of Women's and Children's Health, UNSW Sydney, Kensington, Australia; Department of Pain & Palliative Care, Sydney Children's Hospital, High Street, Randwick, Australia.
⁵ School of Women's and Children's Health, UNSW Sydney, Kensington, Australia; Stats Central, Mark Wainwright Analytical Centre, UNSW Sydney, Kensington, Australia.
⁶ Clinical Sciences, Murdoch Children's Research Institute, Melbourne, Australia; Children's Cancer Centre, Royal Children's Hospital, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia.
⁷ Cancer Centre for Children, The Children's Hospital, Westmead, Australia.

PMID: 31257099
DOI: 10.1016/j.pec.2019.06.022

Abstract

Objective: Pain and fatigue are under-researched late effects of childhood cancer and its treatment, and may be interpreted by survivors as indicating cancer recurrence. Moreover, unmet information needs for managing pain and fatigue may be related to fear of cancer recurrence. We investigated the complex relationships between perceived cancer-related pain and fatigue, unmet information needs for managing pain and fatigue, and fear of cancer recurrence.

Methods: We surveyed 404 adult survivors of any form of childhood cancer (M = 16.82 years since treatment completion).

Results: Many survivors reported perceived cancer-related pain (28.7%) and fatigue (40.3%), and anticipated future pain (19.3%) and fatigue (26.2%). These symptomologies were all related to unmet information needs for managing pain (18.8%) and fatigue (32.2%; all p's<.001). Survivors reporting unmet information needs for managing pain (B = .48, 95% CI = 0.19-0.76, p = .001) and fatigue (B = .32, 95% CI = 0.06-0.52, p = .015) reported higher fear of cancer recurrence than survivors reporting no information needs.

Conclusion: Survivors often have unmet information needs for managing pain and fatigue, and these unmet needs are related to fear of cancer recurrence.

Practice implications: Long-term follow-up clinics should assess pain and fatigue. Information provision about pain and fatigue may be an important tool to help manage fear of cancer recurrence.

Keywords: Childhood cancer; Fatigue; Fear of cancer recurrence; Information needs; Pain.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Adult Survivors of Child Adverse Events / psychology*
Anxiety / psychology
Australia / epidemiology
Cancer Pain / psychology*
Cancer Survivors / psychology*
Child
Fatigue / psychology*
Fear / psychology*
Female
Health Services Needs and Demand / statistics & numerical data*
Humans
Male
Middle Aged
Needs Assessment
Neoplasm Recurrence, Local / psychology*
Neoplasms / pathology*
Neoplasms / psychology
Neoplasms / therapy*
New Zealand / epidemiology
Quality of Life / psychology*
Surveys and Questionnaires