Long Term Follow Up of Childhood CancerTransition of Care to Adult Care

Sheila Pritchard,MDAngela Pretula,RN

Improvement in Cure Rate

Prior to 1970 most patients did not survive

Over the last 30 years the cure rate has steadily increased

80.480.4

1.4 % / Year1.4 % / Year

Increase in Cure Rate (Survival Plateau)has been Steady and Linear

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Improvement in Cure Rate Due to intensive combinations of

treatment, including Surgery Chemotherapy Radiation Bone Marrow Transplant Immune modulation Supportive Care

Cost of Survival Almost 3000 people in BC are long term survivors

of childhood cancer At least 70% will have at least one late effect of

the cancer or it’s treatment 25% will have severe or life threatening late

effects Late effects may be obvious or subtle Can occur at any time after treatment from early

childhood to late adulthood Late effects may be exacerbated or precipitated

by other health problems later in life Late effects impact quality of life and

quantity of life

Long Term Challenges

Second Malignancy Cardiac Lungs Neurocognitive Psychosocial Endocrine Fertility Growth, Bone composition Immunologic

Second Malignancy Cumulative incidence of 3-10% at 20 years post

treatment ie 5-10x increased Breast cancer

Cumulative incidence of 35% at 20-25 years post mantle XRT

Median incidence at 15 years post XRT Median age 31

Thyroid,Salivary gland, Skin, Brain, Bone cancer 20 to XRT

Leukemia 20 to alkylating agents and topoisomerase II inhibitors

Genetic predisposition to cancer Awareness of risk and early detection will

improve survival

Second MalignancyLong Term survivor study

8831 children with ALL (CCSG) diagnosed 1983-1995

63 2nd malignancies Brain 19 Parotid 4 Thyroid 4 STS 4 Other solid tumours 4 AML/MDS 16 Lymphoma 8

Cumulative incidence of 2nd malignancy 1.18% at 10 years = 7.2xincreased risk

Risk increased in females, XRT,relapse Bhatia et al,

Blood02,4257-64

Cardiac Late Effects Anthracycline induced cardiomyopathy More severe in

Young age at treatment Females Mediastinal radiation

May be precipitated by Pregnancy Sudden strenuous exercise Drugs, alcohol Co-morbid conditions – Diabetes, smoking,

obesity Early identification and aggressive

management can decrease morbidity and improve quality of life

Pulmonary Late Effects Not a common late effect but

significant cause of morbidity XRT can decrease growth of

chest wall and lungs BCNU, Cyclophosphamide can

cause lung damage Chronic graft vs host disease can

cause bronchilitis obliterans

Neurocognitive Late Effects Cognitive impairment is one of the most debilitating

sequelae Due to

Tumour Surgery Radiation- Young age, High dose, large volume Chemotherapy – HD MTX, IT chemo Infection

Non Verbal abilities most impaired Short term memory Visual motor integration Sequencing Attention and concentration

Affects school performance, learning and social functioning

Psychosocial and Behavioral Despite the intense stress of treatment

most survivors achieve normal psychological and social function

A small minority are impaired by psychological problems similar to PTSD

Brain tumour survivors are less popular at school and are less likely to marry

Adult survivors of childhood cancer have less social contacts

Endocrine dysfunction Affects 20-50%

Thyroid dysfunction

Growth hormone deficiency

Sex hormones Fertility Adrenal

insufficiency Obesity

Musculo Skeletal Amputation, Limb

salvage Osteoporosis –

30% of ALL Scoliosis

Organization of Follow Up Care Who should be

followed? Why? Where? By Whom? For how long? Who should pay?

Why Should Patients be Followed? For the patient

Prevention, Detection and Treatment of late effects Advice and counselling Security of knowing that their status is understood

For the health care team Research into late effects and translation into

improvements in current treatment Job satisfaction Avoid litigation!

For Society ?Cost benefit of prevention and early detection of

disease Surveillance of offspring of survivors

Who should be Followed? Contact should be maintained

with all patients for life Level of contact should be

variable dependent on the likelihood of late effects Annual visits Letter, phone, e mail follow up

with possibility of attending clinic

Where should they be followed? Under age 18

Currently >90% of patients are followed at BCCH

2 Clinics per week Multidisciplinary team

available Pediatric subspecialists

available Counselling, rehabilitation

services need improvement 10% of patients followed in

Surrey , Victoria or by GP Aim to increase community

follow up clinics Need appropriate training,

multidisciplinary team, subspecialists

Where should they be followed? Over 18

Currently about 25% of patients are followed at the post pediatric clinic at BCCA

Mainly patients with radiation induced late effects

Rest of the patients are referred back to their GP for follow up

Most of these patients do not get regular follow up and there is minimal information received back

Most patients do not understand their risk of late effects. In many cases these risks were not known at the time they were discharged from pediatric care

Who Should Pay? Ontario

$0.25 million/year provided for adult aftercare program

Aim to offer comprehensive, co-ordinated aftercare program for all adult survivors

Traceback of all patients lost to follow up BC

Current funding for post pediatric clinic – BCCA

Aim to increase funding so that we can offer same level of follow up care as Ontario and as recommended by the Institute of Medicine in USA

Aim to set up adult follow up programs in communities

?Linked to cancer agency programs ?Followed by adult oncologists,internists,GP’s