Download - Long Term Follow Up of Childhood Cancer
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