Download Needs assessment of cancer survivors

Needs assessment of
cancer survivors
O Santin, L Murray, A Gavin and M Donnelly
Cancer health services research and survivorship
studies programme
Centre for Public Health, Queens University Belfast
Background




Population of cancer survivors is
increasing
Approx 32,000 people living with cancer
in NI (2005) and 120,000 in RoI (2002)
Limited knowledge about their health and
social care needs
Need for systematic, rigorous health care
needs assessment
Main aims
1.
To elicit cancer care professionals views
and perceptions about the needs of
cancer survivors
2.
To assess the self-reported needs for
care of cancer survivors
Methodology
1.
Qualitative study: semi-structured
interviews (n=21) with purposive
sample (Lead Clinicians, Lead Nurses,
AHPs & major charities); thematic
analysis
2.
Quantitative study: a postal survey (via
GPs) using standardised measures of
NA and QoL with a random sample
(from NICR) of 600 colorectal cancer
survivors; quantitative analysis
1. Qualitative study – key results
What is a cancer survivor?






Various definitions
…time (eg 5-years post-diagnosis)
…cancer-specific trajectory and timepoint
…treatment completion
…personal psychology (eg ‘state of
mind’)
…anyone affected by cancer
… hinders understanding of needs
What are the needs of survivors?
Physical Needs
Fatigue
Functioning
Subsidiary conditions
Psychological Needs
Fear of recurrence
Body image, sexuality
Depression, anxiety
Social Needs
Finance
Employment
…needs of survivors are multidimensional
Factors affecting need




Male
Elderly
Cancer type (eg breast cancer vs. lung
cancer)
Low pop density (eg living outside Belfast
particularly in rural areas)
…survivors with one or more particular characteristics may
require additional dedicated service attention.
What services are available?

A follow-up, hospital-based, test-focused and
clinician-led review of each pt

Variation in follow-up reviews due to
‘practitioner style’ and contextual factors

Ineffective re: detecting c. recurrence?

Test-focused; insufficient attention given to
psychosocial issues

Anxiety-provoking
…need to review post-discharge services for cancer survivors
What services are available?
Primary care





Main service outside hospital for survivors
No specialist primary care service for survivors
Only see survivors who ‘present’ to GP
Survivors require ongoing reassurance from GP
GPs unaware of services for survivors
Voluntary sector provision



Information, support groups, counselling, alternative
therapies, etc
Service users mainly women
Concerns re: support group ‘dependency’
…the role of primary and community care for survivors is not well understood
2. Quantitative study – key results
‘Top 10’ needs










Access to GP - 74%
Coordinated care - 60%
Medical team management – 56%
Local health services – 55%
Recurrence anxiety – 51%
Other illnesses – 48%
Contact after treatment - 44%
Complaints - 40%
Easily understood information - 40%
Fatigue management – 30%
(% unmet)
(12%)
(15%)
(11%)
(16%)
(20%)
(9%)
(9%)
(11%)
(14%)
(12%)
Unmet need – early key results



Unmet need not associated with gender,
marital status, geographical location,
deprivation level, cancer site, time since
diagnosis or cancer stage
Older survivors sig less likely to report
unmet needs (greatest among 50-59 age
group -54% with unmet needs)
Observed across the 4 domains of CaSUN
measure of need
Quality of life – early key results




QoL not associated with gender, marital
status, geographical location, deprivation
level, cancer site or cancer stage
Older survivors sig better QoL than
younger survivors; QoL improved over
time from the point of diagnosis
Observed for total QoL scores only
Strong positive r/ship between unmet
need and QoL
Key conclusions






Various definitions of a cancer survivor
Cancer survivors have specific needs covering
psychological, social and physical domains
Gender, age, cancer site & location of home
affect needs for care (professional perspective)
Age (and time since diagnosis) main driver(s) of
needs and QoL (colorectal survivor perspective)
Need to give particular attention to younger
rather than older survivors?
Follow-up reviews not meeting the needs of
cancer survivors
Key conclusions






Primary and community care including voluntary
sector provision requires review
Need for better co-ordinated care (according to
patient perspective)
Relatively high unmet psychosocial needs
particularly anxiety (recurrence) and fatigue
Role for Self-Management Programmes for
survivors ?
Addressing unmet needs likely to improve QoL
Finally, majority of colorectal survivors appear to
cope extremely well despite these difficulties
A cancer survivor is someone living
with and beyond cancer…



…who has completed initial cancer management
and has no apparent evidence of active disease,
or
….is living with progressive disease and may be
receiving cancer treatment but is not in the
terminal phase of the illness (last six months of
life)
or
…has had cancer in the past
Macmillan Cancer (2008) Two Million Reasons – The Cancer
Survivorship Agenda.