1

Survivorship and quality of life

Pietro Presti Brussels, 16th September 2015

2

Identifying survivorship care gaps

to ensure better quality of life

2

• First thing first: for more and more patients,

survivorship starts with the diagnosis

• Key aspects:

• What should be the role of GPs?

• Tertiary prevention

• Co-morbidities

• Sexual disfuntions and fertility preservation

• Psychological issues

• Socio-ecoomic issues and reintegration to the workplace

• What can patients do?

• ECPC role in CanCon

• Recommendations

3

The role of General practitioners (GPs):

little is known about needs of survivors • Survivors = different array of patients with different

needs:

• Patients right after the acute treatments

• Long term survivors

• Paediatric cancer survivors

• Survivors need a proactive approach by the GP!

• Guidelines to support GPs in treating survivors are

lacking

• How to help survivors with late treatment effects?

• How to treat non-cancer related survivors’ medical problems?

• How to help survivors with tertiary prevention/co-morbidity?

Conclusion: GPs have to be more and better

informed about needs of cancer survivors

3

4

Cancer treatments and

second malignant neoplasm (SMN):

17- 19 % of all new primary malignancies occur in individuals who have

already survived a primary malignancy: cancers have more than doubled in

the last 3 decades (1979 -2009).

The risks are associated with radiotherapy, chemotherapy

and hormonal agents treatment.

Screening to detect cancers early ought in principle to have a considerable

potential to reduce the incidence of mortality from SMNs. National

recommendations for breast cancer after HL and childhood have been

produced in the UK and US

Prostate cancer patients may develop an increase in fat mass

4

5

Related diseases after cancer therapy:

the need for long term follow up

Radiation-related disease include:

• Bladder cancer

• Colon cancer

Androgen deprivation therapy consequence include:

• metabolic syndrome

Clinical end-points often do not occur until at least 10-15 years after

exposure

LONG-TERM FOLLOW UP IS NEEDED.

5

6

Metabolic syndrome:

a cluster of metabolic disorders

Key components of the syndrome are:

• decreased insulin sensitivity

• Hypertension

• overweight

• adverse lipid profile

Metabolic syndrome may contribute to increased CVD risks in:

• prostate cancer patients

6

7

Sexual disfunction and infertility

Damage to nerves, blood vessels and hormones are consequences of

cancer treatment’s toxicity

• ½ of the man and woman treated for the pelvic malignancies

• ¼ of people with other types of cancer are affected by these symptoms

Chemotherapy (ALKYLATING drugs) is the cause of the highest risk of

infertility in men (lung cancer, hematologic malignancies

and neck tumors)

• Men: over 95% in US Prostate cancer treatment group had erection

problems

7

8

Psychological distress

• Deficits in a specific cognitive domains such as memory,

attention, executive functions and processing speed

may profoundly affect quality of life negatively affecting

professional reintegration and interpersonal relationship

• Distress in cancer patients is often report to be above

30%.

• The prevalence of depressive symptoms varies between

10% and 25%, anxiety Symptoms varies from 10% to

30%.

8

9

Professional rehabilitation

The Italian example

9

Il 57% (1.285.680 persone, 2,2% della popolazione totale) di questa popolazione è

rappresentata da lungoviventi oncologici. Molti di questi, possono essere considerati

“guariti”, cioè con un’aspettativa di vita sovrapponibile a quella della popolazione generale.

Risultati: tutti i siti eccetto tumori della pelle non melanomi

10

Professional rehabilitation

The Italian example • 57% of Italian cancer patients (2,2 % of total population)

are long term survivors

• Approximately 22% of them can be considered “cured”:

they life expectancy is equal to the national average;

10

Patient and caregiver

• Medical expenses (visits, drugs etc) and non medical expenses (travels etc).

Direct Cost – 5,8 billion

• Lack of revenues Indirect costs - 30,5 billion

11

Reintegration to the work place

Approximately 2/3 of cancer patients either continue working after their

diagnosis of cancer or return to work.

The process of returning to work is a difficult one for many survivors due to

chronic physical, emotional and occupational problems.

Approximately 42% of cancer patients are diagnosed at a working age

(between 15 and 64 years).

The social cost work for the European Union was estimated, in 2009,

around 126 billion euros; 60% of the economic burden of cancer was in

non-health-care areas, with almost 43 billion euros in loss of productivity

due to early death and 9.5 billion euros do to lost working days.

11

12

Reintegration to the work place

• Crucial! We need to mention it in detail in the

recommendations!

• Possible baseline: Tiraboschi’s work

• Coping with cancer is not only matter of

health/social inclusion, but also of labour

productivity

• Impact of stigma vs cancer survivors

• Particular attention to paediatric cancer

survivors (educational & professional

rehabilitation must be coordinated)

12

13

How can the NCP help creating a culture of

suvivorship – CanCon WP8 • Differentiate between physical-psychological

rehabilitation vs need to return to a normal life.

Psycho-physical rehabilitation goes hand in hand with:

• Sexual, Nutritional, Cognitive rehabilitation

• Tertiary prevention and co-morbities prevention

• Professional rehabilitation

• Research needs

• Need to assess socio-economic impact of rehabilitation

• Enhanced outcome (rehabilitation MUST start with diagnosis!)

• Savings for HC systems

13

14

Create awareness

• Collect data directly from the patients in various EU countries.

Enable surveys on topics such as fatigue, cognitive and

reproductive functions and other socio-economic and quality of life

questions;

• Develop QoL core questionnaires for cancer survivors addressing

medical, socio-economic and QoL issues;

• Create awareness and guidelines in post-cancer care.

• By uniting experts in the field and facilitating their interaction with

patients, bankers and policy makers, future lines of research can

be developed faster and be better adapted to the reality of life after

cancer.

14

15

European Countries engaged in the

development of Survivorship care

French Cancer Control Plan (2009-2013): has highlighted this issue as

part of “Life during cancer and survivorship” whole strategy and is

promoting survivorship and tool based organizations focused on

personalized care and psychosocial support

UK: pilot project on national cancer survivorship through a survey

performed in 2011

Spain: conducted a survivorship care feasibility survey

Italy: conducted research project on cancer survivorship.

SEVERAL RESEARCH PROJECTS EXISTS IN ORDER TO EXAMINE THE

BEST APPROACH IN SURVIVORSHIP

15

16

What is needed to support cancer survivors?

• Define survivorship multidisciplinary pathways

• Problem: is there multidisciplinarIty in the oncology

dept?

• NO!

• Survivorship pathway DO conflict with acute phase treatment,

engulfing the dept.

• Follow up performed ONLY by Medical Oncologist

• Is this still actual?

• Time for Cultural change?

16

17

A possible solution:

cancer survivorship centres

• Survivorship care to be performed in specific centres OUT of the

oncology department

• In partnership with the medical oncologists, but without engulfing the

oncology dept.

• Including all the healthcare professionals needed to support

survivors:

• Psychologist

• Nutritionist

• Social workers – labor lawyers

• Experts in preservation of fertility

• General Practicitiones

• Etc

17

18

Empowering prostate cancer patients:

an ethical dilemma

• Survivorship support is currently NOT sufficient

• Cancer survivors are on the rise!

• More than 9 million Europeans live with a cancer diagnosis

Shall we:

• Explain patients what they need, knowing that MS will

not provide them the basic survivorship support?

• Not explaining patients what they deserve, because

survivorship and rehabilitation pathways are not

available?

18

19

Empowering patients

the role of patients organistions

• Groups of survivors organised into an association are a

precious source of information and support not only to

the patients, but also to Member States

• CanCon WP8 should suggest a particularly strong

relationship to be created between national cancer

patients associations and health ministries, to

• Ensure dialogue among patients, their representatives, and

healthcare providers

• Identify country-specific or cohort specific obstacles to be

tackled at the national/local level

19

20

Thank for your attention

Nothing About Us Without Us

Dr Pietro Presti

ECPC Audit Committee Member

Managing Director “Edo and Elvo Tempia” Foundation

pietro.presti@fondazionetempia.org

@cancereu

European Cancer Patient Coalition

ECPCtv