Download The National Cancer Survivorship Initiative (NCSI) and

The National Cancer Survivorship
Initiative (NCSI) and Gynaecological
Cancer
Cathy Hughes
[email protected]
What I will cover
 The changing concept of cancer
 Improvements in cancer services
 National Cancer Survivorship Initiative
(NCSI)
 NCSI improvements in the context of
gynaecological cancer
Key changes in cancer
 Increasing incidence – aging, obesity, physical
activity
 More people are living longer with incurable
cancer
 More patients are having multiple treatments
 Many are living with the consequences of
treatment
Improving cancer services in
England
 The Health of the Nation (1992)
 EUROCARE studies
 Calman-Hine report (1995)
 NHS Cancer plan (2000)
 Cancer Reform Strategy (2007)
 National Awareness and Early Diagnosis Initiative (NAEDI)
 National Cancer Survivorship Initiative (NCSI)
NCSI aims in 2008
 A vision for the care of people living with and beyond
cancer
 An implementation plan
 Models of care which have been piloted and work
 Survivorship recognised as a priority for patients
 Translation from the vision into action at a local level
 A community of engaged people to lead this agenda
UK prevalence
Double by 2030
5.3 million by 2040
a million a decade
40% Male
60% Female
60% over 65years
Infographics Macmillan Cancer Support. Maddams J et al. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012.
The survivorship pathway
Diagnosis &
Treatment
Newly
diagnosed
Rehabilitation
The first year
Early
monitoring
Later
monitoring
Progressive
illness
Up to 5 and
10 years
from
diagnosis
Beyond 10
years from
diagnosis
Incurable
disease but
not in last
year of life
Maher J &McConnell H New pathways of care for cancer survivors: adding the number. Brit J Cancer 2011
End of life
care
End of life
care in last
year
Tumour specific pathways
Progressive
illness
Maher J &McConnell H New pathways of care for cancer survivors: adding the number. Brit J Cancer 2011
(28,000 year 1)
35,000
???
21,000
6,000
9,000
12,000
41,000
Lung cancer
12,000 (2,000 year 1)
24,000
226,000
122,000
100,000
44,000
48,000
Breast cancer
Median survival times
Median survival by tumour site
Gynaecological cancer
Cancer type
UK Incidence (2010)
UK Deaths (2011)
Cervix
2,851
972
Ovary
7,116
4,272
Uterus
8,288
1,930
Vulva
1,172
404
Vagina
281
91
Total
19,708
7,669
Gynaecological cancer
prevalence
 Complicated by Cx screening programme -significant
decrease in incidence (42% England)
 However, between 2008 and 2009 there was a significant increase in
incidence rate
 Uterine – significant increase in incidence
 Ovary – slight reduction- reclassification and OC
 Survival 5yrs (10yrs) or more:
 Ovary 43% (35%)
 Uterus 77% (74%)
Cx 67% (63%)
Vulval 58%
Vaginal 58%
Survivorship needs
 Survivors report unmet needs Armes et al J Clin Onc 2009
 Survivor population worse health and well-being than those
without a diagnosis of cancer Elliot et al BJC 2011
 Cancers and treatments -increase in common chronic
illnesses eg. heart failure, osteoporosis, new cancers Khan et al
BJC 2011
 New treatment related conditions -not routinely recognised,
documented or managed
 Care often fails at transition points
NCSI vision
‘those living with and beyond cancer are supported to live as healthy and active a life as possible for as long as
possible’ (2010)
 Cultural – recovery, health and well-being
 Holistic assessment – individual and
personalised care planning
 Self-management – not clinical follow-up
 Tailored follow up support
 Patient Reported Outcome Measures
(PROMS)
Taking action to improve
outcomes (2013)
Information and
support from the
point of
diagnosis
Promoting
recovery
Sustaining
recovery
Managing the
consequences of
treatment
Supporting
people with
active and
advanced disease
Information and support from
the point of diagnosis
 Information
 Decision support
 Optimal treatment – individualised
 Holistic Needs Assessment
 Work and finance – working age
Promoting recovery
1. Holistic needs
Assessment
2. Treatment
summaries
3. Health and
wellbeing event
Macmillan Cancer Support
Supporting self management
 Frontline staff can influence
healthy behaviour change
 Raise/prompt issues about
lifestyle
 Refer for healthy behaviour
advices/ opportunities
 Give information on what to
look for and where to go
Sustaining recovery
•Breast 80% patients
•Colorectal 50% patients
•Testicular 95% patients
Care Co-ordination
Remote Surveillance
Managing the consequences of
treatment
 Predict, prevent and manage
 Empower people
 Chronic disease management
 Specialist services – mapping
 Research and communities of
influence
 CCaT http://www.cancerconsequences.org/
•Pelvic radiation will cause a
premenopausal woman to enter the
menopause
•The vaginal symptoms of menopause
are made worse by vaginal fibrosis and
narrowing of the vaginal tube, making
intercourse uncomfortable or impossible.
•Starting 6 months after treatment, the
skin exposed to radiation may show
areas of pigmentation, depigmentation
or stiffening.
•Long-term narrowing of the rectum,
and a passage (fistula) between the
vagina and the rectum may develop.
•The bladder may become stiff and
reduced in size, causing frequent
urination, and urinary infections.
•Rarely, a vesicovaginal passage or
fistula develops, resulting in
incontinence.
Patient Reported Outcome
Measures
 Fear of recurrence and dying
 38% of prostate cancer -urinary leakage; 58% impotence
 One in five colorectal survivors -difficulty in bowel control
 QOL is closely associated with disease status and other long
term conditions
 Almost a third no physical activity
 Increased physical activity associated with better QOL
Women at least 12 months post
pelvic radiotherapy
 84% had changes in either bowel or bladder
function following therapy
 Over a third of women had faecal incontinence
 Nearly half were incontinent of urine
 4 had at least one stoma
 77 patients – 29 cervical cancer
Holmes, L (2010) Identifying side effects of pelvic radiotherapy. Cancer Nursing Practice.
Supporting people with active
and advanced disease
 Need better data collection
 Discussion at MDT – new
diagnosis support
 Identify best practice
 Early palliative care support
improves quality and quantity
of life
In summary
 Cancer aftercare is changing
 NCSI has investigated, developed and tested
innovations to improve care
 Gynaecological cancer services can use the
models of care to improve the survivorship
pathway for women
Thank you for listening
Any questions?