SURVIVING CHILDHOOD CANCER : WHAT NEXT?Challenges in Developing Countries

P. Kurkure, V.Dhamankar, S.Goswami, N.Dalvi, E.Rawat-PawarACT Clinic, Division of Pediatric Oncology, Tata Memorial Hospital, Mumbai, INDIA

IN USA

IN INDIA

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BY THE YEAR 2010 AD, 1 IN 650 YOUNG ADULTS WILL BE SURVIVORS OF CHILDHOOD CANCER.

NO SUCH DEFINATE ESTIMATE CAN BE MADE

35,000 - 40,000 NEW CASES OF CHILDHOOD CANCER ANNUALLY

CONSERVATIVE ESTIMATE OF 10-20% SURVIVAL

3.5 - 7,000 SURVIVORS ADDED TO POPULATION EACH YEAR

Five - year Survival Rates for Childhood Cancer

Progress In Cancer Therapy

All Sites

Bone andJoint Cancer

Neuroblastoma

Brain and OtherNervous System

Cancer

Wilms Tumor

Hodgkin’s Disease

Acute LymphocyticLeukemia

Acute MyeloidLeukemia

Non-Hodgkin’sLymphomas

70%

28%

64%

61%

20%

25%

60%

35%

33%

92%

92%

52%

78%

4%

3%

28%

69%

18%

1996

1960

Magnitude of Problem

Definition of Survivorship

“An individual is considered a cancer survivor from the time of cancer diagnosis through

the balance of his or her life.” National Coalition for Cancer Survivorship

NCI Office of Cancer Survivorship

“Disease free survival for at least 2 years after cessation of therapy OR 5 years after the

diagnosis.” Long term survivor ( LT)

Seasons of Survival

SURVIVOR

DISEASEACTIVE

PATIENTACUTE CARE

CLINIC (ACC)

CESSATION

OF THERAPY

FEAR OF

RELAPSEFOLLOW UP IN

ACC ENSURED

SPECIAL

BOND FOLLOW-UP IN

ACT CLINIC ENSURED

Long Term follow up programme should include

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A single physician interested in late effects

A nurse or nurse practitioner coordinator

A dedicated time and place

At least two follow-up clinics a month

Comprehensive care and screening for late effects based on the survivor’s treatment

Referral to appropriate specialists

Wellness education

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Psychosocial distress can be addressed

Cancer recurrences can be caught early

Preventable conditions may be avoided

Potentially lethal late affects may be averted

Quality of life may be improved

Benefits of a Survivor Care Plan

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TO MONITOR GROWTH, DEVELOPMENT & SEXUAL MATURATION OF SURVIVORS

TO MONITOR LATE EFFECTS OF THERAPY.

TO ADDRESS PSYCHO-SOCIAL PROBLEMS OF THE SURVIVORS

REHABILITATION FOR USEFUL PRODUCTIVE ADULTHOOD

TO PROVIDE FEED BACK FOR FUTURE PROTOCOL MODIFICATION TO OBVIATE/MINIMISE LATE EFFECTS

A C T ACT FTER OMPLETION OF HERAPY - Clinic

beyond therapy to achieve

in its true perspective

started in Feb 1991

ACT

“ cure ”

Only clinic of its kind in India.

Objectives

Multidisciplinary Team Approach

- Pediatric Oncologist

- Clinical Psychologist

- Medical Social Worker

- Interaction with array of health care professionals

Service Oriented Clinic

Organisation

1. History of inter current illnesses

2. Measurement of height and weight and maintaining growth charts.

3. Assessment of pubertal development and fertility counselling

4. Cardiac monitoring -2D Echo(if received anthracycline+ mediastinal radiotherapy.

5. Assessment of thyroid and/or other endocrine evaluation as indicated.

6. Monitoring for relapse/second malignancies and reducing the risk of second malignancies.

7. Assessment of neuropsychological and psychosocial status

8. Genetic counselling when indicated e.g survivors of retinoblastoma.

Evaluation of The Survivors of Childhood Cancer in ClinicACT

Assessment criteria

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Scholastic performance

Psychosocial problem

Employment /Marital status

Rehabilitation Status

Psychosocial Evaluation

Clinical Characteristic of Survivors in Clinic (Feb.91-Feb11)ACT

Total Survivors 1201

Male: Female 881:320 (3:1)

Haematolymphoid : Solid tumors 567:634

Mumbai : Non Mumbai 393:808

Median age at diagnosis 6 yrs (0-19yrs)

Median time since diagnosis 9yrs (2-38yrs)

Median Time since cessation of therapy 8yrs (2-36yrs)

Median duration of follow up in ACT 4yrs (0-19yrs)

Grading for Delayed Toxicity and Sequelae

Grade Definition

0 Absent

I Asymptomatic changes that did not require any corrective measure and did not influence the subject’s general activity.Most were detected by the research investigator or by the diagnostic procedures planned by the study protocol

II Moderate symptomatic changes interfering, with subject’s activity. Laboratory tests could be abnormal. When therapeutic measures were required, therapy was well tolerated and/or led to a completed recovery or cure.

III Severe symptomatic changes that required major corrective measures and strict and prolonged surveillance; cosmetic changes: limb amputation; enucleation of an eye: impaired reproductive function; neurologic abnormalities limiting autonomic function; learning impairment requiring special educational support.

IV Life threatening sequelae.

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Striking male preponderance (3:1) suggestive of preferential treatment to male child in our society .

Excessive grade III sequel (26%) with decremental trend (38—28—11%) in solid tumours stressing continued need for fine tuning of protocols

Significant growth retardation (66%) and learning disabilities (50%) in cranial irradiated group highlighting need for avoidance / reduction in cranial RT usage.

Persistent risk of death attributed to late recurrence and SMN.

Clinical Characteristic of Survivors in Clinic (Feb.91-Feb11)ACT

Grading of late effects:

Gr.0 553 (46%)

Gr.I 225(19%)

Gr.II 111 (09%)

Gr. III 248 (21%)

Gr. IV 64 (05%)

Critical Observations

Pattern of Follow up in clinicACT

ACT Reg.era Total Defaulters Regular FUP

1st era 1991-1996 337 230/337 (68%) 107/337 (32%)

2nd era 1996-2001 243 123/243 (50%) 120/243 (50%)

3rd era 2001-2006 394 123/394 (31%) 271/394 (69%)

4th era 2006-2011 227 008/227 (03%) 219/227 (97%)

Total 1991-2011 1201 484/1201 (40%) 717/1201 (60%)

Ensuring Good follow Up

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ACT team -patient bonding, effective listening

Titrate follow up with proximity of stay, time from diagnosis, and associated risk of morbidities (Low, Moderate & High risk) Q 1-3 yearly

Interim distant follow-up with telephonic /postal/email communication

Creation of nation wide ACT clinics at tertiary cancer centers with critical survivor population

Sensitizing Primary care providers regarding problems of survivors (Shared care Model)

lSocial/ FinanciallPsychological/ Emotional lSpiritual/ ExistentiallPhysical

Impacts of Long Term Survival

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How do they identify risks and problems?

Who will assess cancer-related concerns?

How do they find a specialist who will take their concerns/symptoms seriously?

Will they get insurance cover?

Will there be any discrimination in job & marital prospects?

What resources are available for LT survivors?

Challenges for Survivors

Vision

Mission

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To ensure that every childhood cancer survivor finds his/ her way to celebrate life after winning battle with cancer.

To facilitate their life’s journey on correct path & in right direction.

Self-empowerment of the young survivors

Helping other young people undergoing the treatment.

Social awareness and re-bonding with Society.

thDream Realised on 7 June 2009

Milestones Attained in clinicACT

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Providing longitudinal care to survivors at tertiary cancer centre

Ongoing communication with primary care provider

Education and empowerment of survivors through voluntary support group ( Ugam )

Conclusions

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Survivorship challenge is a fact

Survivors will increase year by year

The impacts of long-term survival are well-known…More to learn

Survivor Care Plan is a MUST

Multidisciplinary care outpatient clinics are desirable

Last but not the least….

Ensure that they join the mainstream of society despite medical and / or psychosocial disadvantage and live a productive and fruitful life.

And they become our messengers for spreading the message of curability of childhood cancers & advocates for this cause.

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CARE OF THE SURVIVORS PERCEIVED IN THE

“CONTINUM OF CHILD’S HEALTH AND LIFE”

Prevent a Biologically cured child of To-Day from becoming a physical and psychosocial cripple of To-morrow

A child on par with peers in growth and development , achievement and aspiration.

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“CONCEPT OF A CURED CHILD”