goals of care in aya and other disparate populationsdownload.cnsacongress.com.au/friday 13...

“A bridge without gaps”

Goals of Care in AYA and other disparate populations

Dr Rachel Hughes Lead Clinician, Western Australian Youth Cancer Service

Palliative Care Outreach Physician, Pilbara, Western Australia

Acknowledgements

WA YOUTH CANCER SERVICE

Session Overview: What lessons are learnt from a “disparate cohort”?

AYA oncology – do we

need ANOTHER

specialty?:

•Who are the AYAs?

•When cancer and youth

health collide

Health During Cancer:

• AYA are socially and

biologically unique

• Survivorship

• Incurable disease

A model of care for

AYA and what have we

learnt?

• Youth Cancer

Services

• Care Coordination

• Sustainability

Edward Morris : History of the London Hospital (3rd Ed) 1926

10

years

20 year222s

30

years

Industrial

revolution

Agicultural

settlement

Mid 20th

Century

Menarche

Psychosocial

maturation

Hunter

gatherers

Menarche & social transitions in high income world

AAGluckman, P. D., and M. A. Hanson. "Changing times: the evolution of puberty." Molecular and cellular endocrinology 254 (2006): 26-

31.

Present

Day

Adolescence

10 years

20 years

30 years

The road is long:

Hunter

gatherersHunter

gatherers

Hunter

gatherers

Agricultural

settlement

Industrial

Revolution

Mid 20th

centuryPresent day

Social determinants?

• (Seeman et al., Synapse, 1987) (see also Huttenlocher & Dabholkar, J Comp Neurol,1997;

• Petanjek et al., PNAS, 2011)WA YOUTH CANCER SERVICE

The adolescent brain:

• (Seeman et al., Synapse, 1987) (see also Huttenlocher & Dabholkar, J Comp Neurol,1997;

• Petanjek et al., PNAS, 2011)


Decisions, decisions….

Health of Adolescents and Young Adults

Adolescents : Health Risks and Solutions – WHO (2014)

•Sexual Health

•Mental Health

•Violence

•Alcohol and Drugs

•Injuries

•Nutrition – malnutrition and obesity

•Tobacco

•Exercise

•Adolescent Rights


birth 15 30 40 years

ChildrenCancers of early growth

Adolescents and Young Adults

AdultsCancers of aging

ALLNHLPNETWilmsNeuroblastomaRetinoblastomaCraniopharyngiomaRhabdomyosarcoma

OsteosarcomaEwing sarcomaGCT boneRhabdomyosarcomaSoft tissue sarcomasDesmoplastic small round cellOligodendrogliomaCNS germ cell tumoursMelanomaHodgkinPh+ ALLAPMLAMLTesticular CaOvarian CaColon CaHepatic CaNasopharyngeal CaBronchoalveolar Ca

CarcinomasAerodigestiveGenitourinary

BreastSkin

etc

Diagnostic Delay

Unfavourablecytogenetics and

histology

Host biology and pharmacokinetics

Referral pathways and treatment setting

A correlation between survival and accrual to clinical trials

Bleyer et al 2003

30%

20%

10%

0%

2%

1%

0%

-1%

-2%

-3%0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45+

Ave

rage

An

nu

alC

han

ge 5

Yr

Surv

ival

10% 20% 30%

P=0.003

2.4%

1.2%

0%

-1.2%

-2.4%

-3.6%0%

Accrual %

Age

Ave

rage

An

nu

al C

han

ge 5

Yr

Surv

ival A

ccrual o

nto

Clin

ical Trials (%)

Soft-TissueSarcomas

Increased toxicity for AYA receiving paediatric protocols?

Age is recognised to influence toxicity profiles.

Observations from the literature:

• Treatment related adverse effects and mortality (St Jude)

• Osteonecrosis (AIEOP-ALL 95, ALL-BFM95)

• Thromboembolic events (DFCI ALL protocols)

• Tumour lysis

• Hyperglycemia, Diabetic ketoacidosis

• Higher infection rates (CCG 2961, CCG2891, AML-PFM 93, AML-PFM 98)

• Obesity

Wood, W. A., & Lee, S. J. (2011). Malignant hematologic diseases in adolescents and young adults. Blood, 117(22), 5803-

5815.


AYA prevalent toxicities:

Vincristine Neuropathy

Myelosuppression

Osteonecrosis

Bone marrow transplantation complications

Late effects of treatment

Bukowinski : Toxicity of cancer therapy in adolescents and young adults.

Seminars in oncology nursing Aug 2015

Fertility Preservation - female


Stern, C., Conyers, R., Orme, L. M., Barak, S., Agresta, F., & Seymour, J. (2013). Reproductive concerns of children and adolescents with cancer: challenges and potential solutions. Clinical Oncology in Adolescents & Young Adults, 3.

Patient age General medical conditioncytopenias coagulopathy

Treatment Type

Chemotherapy:Alkylating agentsCumulative Effect

Radiotherapy:CranialWhole BodyAbdo / pelvic

Pre-transplant

Risks of processHormonal

manipulationAnaesthetic

Diagnosis – treatment urgency

Disease contamination of reproductive tissues

Fertility preservation - male


Symptoms in AYA cancer patients

Most common symptoms

during treatment

• Fatigue

• Sleep-wake disturbances

• Nausea

• Anorexia / eating problems

• Pain

• Mood disturbance

• Appearance Changes

Erickson, J. M., MacPherson, C. F., Ameringer, S., Baggott, C., Linder, L., & Stegenga, K. (2013).

Symptoms and symptom clusters in adolescents receiving cancer treatment: A review of the


• Is the profile unique?

• Is the burden different?

• Should management differ?

AYA have many significant years ahead of them.

They enter these years with a unique and heavy burden

• Higher rates obesity and physical morbidity

• Lower educational achievement

• Greater levels of social isolation

• Higher rates of anxiety and depression

• High prevalence post traumatic stress disorder

• Significant fear of cancer recurrence

OnTrac at Peter Mac : Survivorship Connections


After treatment:Young cancer survivors are a high risk medical cohort

Higher risk:

•Cardiovascular toxicity

•Neurocognitive effects

•Chronic Diseases – obesity, diabetes, hypertension

•High risk pregnancy

•Poor general health

•Recurrent malignancy

•Second malignancy

•Premature ovarian failure


After treatment:Young cancer survivors are a high risk medical cohort


Hodgkins Lymphoma cure rate 95-97% in AYA

Thyroid problems 30%

Second Malignancy: Breast, lung, thyroid, stomach, bone, soft tissueHaematological malignancyBreast cancer secondary to radiotherapy

15-25x populationCumulative risk 12-17% at 30 years

(Horwich, Swerdlow. British journal of cancer (2004)

Cardiomyopathies: Radiotherapy, anthracyclinesHigh risk pregnancy

Others:

Continuing the transition

• “AYAs occupy the world between child and adulthood.”

• “The speed of this process depends on the individual and their circumstance.”

• “It is important to balance unachievable goals with goals that can be realised, however short a life may be”.

Rob George and Finella Craig

Palliative Care for Young People with Cancer (2009)

Picture: www.stefaniaboleso.com/is-google-plus-growing-up/

What do young people want from their health care provider?

Balancing hope and realism

“They know what my future will be like. They

know how desperate and sad and painful and

short my situation is. But without ever being

unrealistic or instilling false hope, they somehow

contribute to making sure I’m not a desperate or

sad human being. They tell it how it is, no spin.

Then they proceed to assure me that I can still

do excellent things and be an excellent person.

They encourage me to make my life, shall I say,

more potent. And to enjoy everything I have the

capacity to enjoy.”

Jack 21yo

YOUTH CANCER SERVICE

Tricky Disease – Creative Solutions

Palliative chemotherapy

Surgery – metastectomy, pneumonectomy

Stenting

Bronchoscopy

Embolisation

Radiotherapy

Pain procedures eg nerve blocks

Clinical trials

Control of bleeding

“He had a very difficult hour and a half; the cancer had filled his lungs and his lungs had filled with fluid so he essentially suffocated, and that is not an easy way to die, but that was the way he wanted to die. He wanted to be conscious and he was. As hard as those memories are to be there while he suffered so much, we’re so blessed because we were there — we were all there”

Did we do a good enough job? – Uncontrolled symptoms


A role for consultative youth cancer services:

Health Before:

• Adolescent Health

• Advocacy

• Diagnostic delay

• Referral pathways

• Sarcoma MDT

Health During:

• Fertility Preservation

• Psychosocial support

• Symptomatology

• Care coordination

• Clinical trial access

• Incurable Illness

• GP communication

Health Beyond:

• End of treatment

• Late Effects

• Surveillance

• Chronic disease

• Transition

• Palliative Care

Sustainable services

Educated champions are the best advocates


Consultation with your cohort


Don’t be modest – demonstrate your work

Acknowledgments

YOUTH CANCER SERVICE

• 1.Palmer, S., & Thomas, D. (2008). A practice framework for working with 15–25 year-old cancer patients treated within the adult health sector. Melbourne: onTrac@PeterMac: Victorian Adolescent & Young Adult Cancer Service.

• 2.Jones, B. L. (2008). Promoting healthy development among survivors of adolescent cancer. Fam Community Health, 31 Suppl 1, S61-70.

• 3.Langeveld, N. E., Stam, H., Grootenhuis, M. A., & Last, B. F. (2002). Quality of life in young adult survivors of childhood cancer. Support Care Cancer, 10, 22.

• 4.Shama, W., & Lucchetta, S. (2007). Psychosocial issues of the adolescent cancer patient and the development of the teenage outreach programme (TOP). Journal of Psychosocial Oncology, 25(3), 99-112.

• 5.Zebrack, B. (2009). Information and service needs for young adult cancer survivors. Support Care Cancer, 17(18543006), 349-357

• 6.Kwak, M., et al. (2013). "Prevalence and predictors of post-traumatic stress symptoms in adolescent and young adult cancer survivors: a 1-year follow-up study." Psycho-oncology 22(8): 1798-1806.

• 7.Varela, V. S., et al. (2013). "Posttraumatic stress disorder (PTSD) in survivors of Hodgkin's lymphoma: prevalence of PTSD and partial PTSD compared with sibling controls." Psycho-oncology 22(2): 434-440.

• 8.Palmer, S., Mitchell, A., Thompson, K., & Sexton, M., (2007). Unmet needs among adolescent cancer patients: A pilot study. Palliative and Supportive Care, 5, 127-134.

• 9.Ganz, P. A., Earle, C. C., & Goodwin, P. J. (2012). Journal of Clinical Oncology Update on Progress in Cancer Survivorship Care and Research. Journal of Clinical Oncology, 30(30), 3655-3656.

• 10.Thompson, K., Palmer, S., & Dyson, G. (2009). Adolescents and young adults: Issues in transition from active therapy into follow-up care. European Journal of Oncology Nursing, 1-6.

• 11.Von Essen, L., Enskär, K., Kreuger, A., Larsson, B., & Sjödén, P.O. (2000). Self-esteem, depression and anxiety among Swedishchildren and adolescents on and off cancer treatment. Acta Pædiatr, 89, 229-236.

• 12.Whyte, F., & Smith, L., (1997). A literature review of adolescence and cancer. European Journal of Cancer Care, 6, 137-146.

• 13.Zebrack, B. J. (2000). Cancer Survivor Identity and Quality of Life. Cancer Practove, 8(5), 4.

• 14.Decker, C. L. (2006). Coping in adolescents with cancer: a review of the literature. J Psychosoc Oncol, 24(4), 123-140.

• 15.Towle, A., Godolphin, W., & Van Staalduinen, S. (2006). Enhancing the relationship and improving communication between adolescents and their health care providers: A sc

• 16.Wood, W. A., & Lee, S. J. (2011). Malignant hematologic diseases in adolescents and young adults. Blood, 117(22), 5803-5815.

• 17. Erickson, J. M., MacPherson, C. F., Ameringer, S., Baggott, C., Linder, L., & Stegenga, K. (2013). Symptoms and symptom clusters in adolescents receiving cancer treatment: A review of the literature. International journal of nursing studies

goals of care in aya and other disparate populationsdownload.cnsacongress.com.au/friday 13...

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