implementation of a train-the-trainer curriculum to

Implementation of a Train-the-Trainer

Curriculum to Enhance Palliative Care for

Children with Cancer

Project Team

Eric Bouffet

Stefan Friedrichsdorf

Mark Greenberg

Amna Husain

Stephen Liben

Jason Pole

Hal Siden

Jim Whitlock

Joanne Wolfe

Adam Rapoport (Co-PI)

Kim Widger (Co-PI)

This project was made possible through financial support from the Canadian Partnership Against Cancer and Health Canada. The views

expressed herein do not necessarily represent the views of Health Canada or the Canadian Partnership Against Cancer.

Canadian Hospice Palliative Care Conference

Presenter Name: Kimberley Widger

Relationships with commercial interests: None

Presenter Disclosure

Pediatric Palliative Care

“the art and science of patient and family-centered care aimed at enhancing quality of life, promoting healing, and attending to suffering.”

Project Overview To enhance the quality of palliative care provided to children with cancer and their families, we:

1. Implemented a national roll-out of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Peds) curriculum

2. Assessed the impact of our roll-out on:

A. Knowledge dissemination outcomes

B. Knowledge of health professionals

C. Practice change outcomes

D. Quality of palliative care

Development led by Stefan Friedrichsdorf

Uses a ‘train-the-trainer’ model

Master Facilitators >> Trainers >> HP

Encourages quality improvement (TIPS Kit)

EPEC®-Peds

Regional Teams of 3-5 health professionals • oncology, palliative care, and the community

2 days for face-to-face training

2 new TIPS Kits • Bereavement follow-up

• Goals of care discussions

Ongoing support for teams

Enhancements

Project Outcomes





A. Knowledge Dissemination

Goal: 5 Master Facilitators

Goal: 42 – 80 Trainers

72 Trainers in 15 Regional

Teams

Goal: 600 Health

Professionals

309 563

49

33

307

49

253

1266

262 152

93 121

18

3475 Health Professionals

Modules Most Frequently Taught

What is Pediatric Palliative Care

Preparation for Death

Communication and Planning

Self-Care

Broad Spectrum Analgesia

Opioid Selection and Rotation

B. Health Professionals’ Knowledge

Item % Agreement

My knowledge of the topic improved

96.7

Information will enhance my practice

96.3

I will encourage the organization to adopt a new practice

74.1

C. Practice Change Outcomes

Topics chosen across sites:

Symptom screening – 7 sites

Bereavement follow-up – 4 sites

Sibling support – 2 sites

Increased referrals to PPC – 1 site

Mouth care – 1 site

Goal: 10 sites successfully complete project

cross-sectional view of the quality of palliative care, before and after roll-out

• pre-test period January 2015 – May 2016

• post-test period October - December 2016

Data collected via:

1) Surveys with children on active treatment

2) Surveys with parents of children on active treatment

3) Surveys with bereaved parents

4) Chart reviews of deceased patients

D. Quality of Palliative Care

Proportion of older and younger children who are "Never" or "Almost Never" asked about symptoms or quality of life

0

5

10

15

20

25

30

35

40

45

50

Symptoms QOL

Pre Older Post Older Pre Younger Post Younger

2) Quality of Care: Parent Perspective

0.00

0.50

1.00

1.50

2.00

2.50

3.00

3.50

4.00

Relationships InvolveParents

Informationshared (HP)

SiblingSupport

Overall

Pre (325)

Post (213)

3) Bereaved Parents’ Perceptions

0.00

0.50

1.00

1.50

2.00

2.50

3.00

3.50

4.00

Relationships InvolveParents

Informationshared (HP)

SiblingSupport

ParentSupport

Care at death Overall

Thinking back, do you have any regrets about your child's care during the last month of his/her life?

0.0

10.0

20.0

30.0

40.0

50.0

60.0

no regrets a few regrets some regrets many regrets very many

Regrets from Parents • I would have liked to have had him home more. The doctors

told us that if we took him home they couldn't monitor his electrolyte levels in his blood and if they went out of whack (which had been happening) it could shorten his life. We felt stuck there.

• If we had known earlier about her rare and aggressive form of ALL, we might have forgone the 3rd chemo round in order to have made the end of her life a bit more comfortable.

• Our one regret for the last 2 weeks of our child's life was not pushing for better pain management during evenings and weekends.

• I wish we had been better informed that his death was very imminent.

Median Time from Palliative Care Referral to Death (days)

0

50

100

150

200

250Pre

Post

Median Time from ACP to Death

0.0

20.0

40.0

60.0

80.0

100.0

120.0

140.0

160.0

180.0

200.0

1 2 3 5 6 7 8 9 10 11 12 13 14 15 16 Total

Pre

Post

Key Findings on Care Quality

Highs • Patients reports of Sx and

QOL fit with norms

• Quality of care scores fairly high

• High proportion followed by PC

• Large proportion die in hospice when available

Lows • QOL not routinely assessed

• Support for siblings is lowest rated area

• Some sites referred to PC relatively late

• Hospital is NOT the preferred location for 1/3 of families whose child died there

Successes!





Thank You!

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