Changes in supportive care needs after first-line treatment
for ovarian cancer: identifying care priorities and risk
factors for future unmet needs
Vanessa L. Beesley
1
*, Melanie A. Price
2
, Penelope M. Webb
1
, Peter O’Rourke
3
, Louise Marquart
3
, Australian Ovarian
Cancer Study Group
1
, Australian Ovarian Cancer Study–Quality of Life Study Investigators
2
and Phyllis N Butow
2
1
Gynaecological Cancers Group, Queensland Institute of Medical Research, Herston, QLD, Australia
2
Centre for Medical Psychology and Evidence-Based Decision-Making, School of Psychology, The University of Sydney, Sydney, NSW, Australia
3
Statistics Unit, Queensland Institute of Medical Research, Herston, QLD, Australia
*Correspondence to:
Queensland Institute of Medical
Research, Gynaecological
Cancers Group, Locked Bag
2000, Royal Brisbane Hospital,
Herston, QLD 4029, Australia.
E-mail: Vanessa.Beesley@qimr.
edu.au
Received: 24 November 2011
Revised: 26 July 2012
Accepted: 8 August 2012
Abstract
Objective: The objective of this paper is to determine changes in supportive care needs after first-line
treatment for ovarian cancer and identify risk factors for future unmet needs.
Methods: Two hundred and nineteen women with ovarian cancer were asked to complete a baseline
survey 6–12 months after diagnosis then follow-up surveys every 6 months for up to 2 years. The
validated Supportive Care Needs Survey-Short Form measured 34 needs across five domains. Logistic
regression identified baseline variables associated with future needs.
Results: At baseline, standardized median scores (possible range 0–100, least-to-greatest need)
within the psychological, system/information, physical, patient care and sexuality need domains were
25, 20, 15, 15 and 8, respectively. The most frequently reported moderate-to-high unmet needs at
baseline were needing help with fear about cancer spreading (25%), concerns about worries of those
close (20%), being informed about things to help get well (20%), uncertainty about future (19%) and
lack of energy (18%). All except the item about being informed were still reported as unmet needs
by ≥15% of women 2 years later. Median health system/information, patient care and sexuality
need scores decreased over 2 years (p < 0.05), whereas psychological and physical scores remained
constant. Risk factors for having ≥1 moderate-to-high unmet overall, psychological or physical need
1–2 years after baseline included older age, advanced disease, unmet need, anxiety, depression,
insomnia and less social support at baseline.
Conclusion: Women with ovarian cancer report needing ongoing assistance to deal with psycholog-
ical and physical needs over the first 2 years after first-line treatment. Targeting individuals at risk of
future unmet needs should be prioritized.
Copyright © 2012 John Wiley & Sons, Ltd.
Introduction
Most women with ovarian cancer have advanced disease at
diagnosis [1]. They are typically treated with surgery and
six 3-weekly cycles of adjuvant chemotherapy. Although
most women initially respond to treatment, 80% experi-
ence disease recurrence and go on to have multiple courses
of chemotherapy over several years, before succumbing to
their disease [1]. Survival is an important objective of
treatment but, in the context of advanced disease and the
debilitating side effects of ongoing treatment, maximizing
quality of life is also a priority issue. Comprehensive care
involves not only curative efforts but also attention to a
whole range of patient needs [2]. It is through meeting
these needs that we can improve overall quality of life [3].
Needs assessment tools explicitly assess the stated
desire for some action or resource that will help the patient
attain optimal well-being [4]. Such tools directly measure
the gap between a person’s experience of a service and
the actual service required [5], highlighting deficiencies
in service delivery. Little information is available about
the specific needs of women with ovarian cancer. The
only published study to date, a cross-sectional single clinic
sample of 50 women, reported that the most frequently
reported needs were psychosocial, such as fear about the
cancer returning or spreading [6]. While other studies
include women with ovarian cancer among heterogeneous
gynecological samples, these have been cross-sectional,
mainly longer-term survivors [7–9] and/or convenience
samples [9,10] and do not separately report on women
with ovarian cancer. The needs of women with ovarian
cancer are likely to differ from those of other gynecolog-
ical cancer subgroups, due to their predominantly late
stage diagnosis and ongoing courses of chemotherapy.
Some support needs are also likely to change over time.
Studies of women with ovarian cancer have shown that
compared with women undergoing first-line chemotherapy,
those on post- treatment have significantly higher physical
and functional well-being [11], lower depression and bet-
ter quality of life [12]. After initial treatment-associated
clinical care, some needs may be resolved, or addressed
by family, friends or community organizations, although
others may remain unmet [13]. Only one longitudinal
study has been published that assessed unmet needs of
cancer patients beyond the end of primary treatment. In this
study, 30% of a mixed cancer group (including breast,
prostate, colorectal, and gynecological cancer and non-
Hodgkin’s lymphoma survivors) who were treated with
Copyright © 2012 John Wiley & Sons, Ltd.
Psycho-Oncology
Psycho-Oncology (2012)
Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3169