Continuity of Care

Chairs

Veronique Dinanad

Head of Department

Pediatric Palliative and Supportive Care Unit Bai Jerbai Wadia Hospital for Children Parel, Mumbai

Chandan Kumar

Senior Project Manager

Resonance

Goal Statement

  • To establish pediatric palliative care programs in all pediatric cancer centers.
  • To establish survivorship clinics in all cancer centers and develop guidelines for follow up care.

Key Focus Areas

Key Focus Areas (Palliative Care)
  • Map all existing pain and palliative care services in India.
  • Publish a position statement on palliative care.
  • Train and educate health care professionals on palliative care.
  • Develop guideline for palliative chemotherapy and palliative radiotherapy.
  • Develop SOPs on PPC services.
Key Focus Areas (Survivorship and Reintegration)
  • Rehab introductory session for Patients, Survivors and Health Care Professionals.
  • Develop national surveillance/follow-up guidelines.
  • Develop position statement on fertility preservation.
  • INPHOG C2S study expansion to capture national survivorship data.
  • Conduct research studies to understand the long term effects of childhood cancer treatments and survivorship outcomes in India.
  • Establish fertility preservation working group.

Glimpses of Work

(a) Publish a position statement on palliative care
Context

This position statement for palliative care in pediatric oncology will address gaps in palliative care in the country by training, developing guidelines and establishing joint clinics with focus on paediatric palliative care.

Purpose
  • The palliative care sub-committee did literature study of the work done on the position statement globally.
  • A draft position statement is being made by 11 members and will be circulated for feedback.
  • Timeline - Within three months, the position statement for palliative care will be coined.
Status/Next Steps

The first guidelines for integrated pediatric palliative care in oncology were published in 2013. Inadequate emphasis and resources have meant that there are currently significant gaps in the delivery of integrated PPC for this cohort in our setting. This position statement reiterates the need for collective resolve and commitment and gives a roadmap to making effective palliative care a reality for every child and adolescent with cancer in India.

(b) Develop national surveillance/follow-up guidelines.
Context

Children suffering from cancer should have access to high quality care across different regions and facilities. It helps in maintaining continuity of care from the initial to post treatment phase and reducing the discontinuity in care. It also helps in Monitoring and Surveillance.

Purpose

A standardized aftercare model and surveillance guidelines will help in facilitating consistent data collection on patient outcomes, which can be valuable for research purposes too. By having clear guidelines in place, healthcare providers can better allocate resources for aftercare services based on identified needs and priorities.

Status/Next Steps

The first meeting was held on 1st June 2024 on zoom on “Adaptation of COG guidelines for India”. The next step includes, identifying the essential late effects according to India and working on the guidelines