Amaan Shah Foundation for Child Cancer

Amaan Shah is a 11 year old boy from Andhra Pradesh who was diagnosed with Burkitt's lypmphoma. Very sadly, he died while undergoing treatment. His mother very poignantly describes his journey - as only mothers can and I would strongly recommend all us health professionals and parents to read it. It brings to our attention the familiar challenges of delay in recognising the symptoms and diagnosis, the lack of referral pathways, the toxicity of treatment, the inadequate palliation of symptoms, and above all the large vacuum of information and guidance.

Amaan's parents have very bravely and courageously decided to join the cause of children with cancer and set up a foundation in his name Amaan Shah Foundation for Child Cancer. Amaan's mother Asma Pasha says "I don't want all our efforts to go waste, specially MY SON'S... I want to get strong with my emotions and lead for a good cause. What my son..me..my whole family has faced.. i wish and pray Almighty no parents and children should face that. well its all Almighty's command but still our efforts can make a difference".

I sincerely admire how Amaan's family is trying to turn personal loss and grief into a force for change. I wish them all the best.

Chemotherapy Reference Card for Nurses

I would like to share with you a recent initiative by International Network for Cancer Treatment and Research (INCTR) Palliative Access/ PAX Program and MNJ Institute of Oncology and Regional Cancer Hospital in Hyderabad.

Virginia LeBaron who is a Nurse in the INCTR Palliative Access/ PAX Program has developed a handy pocket chemotherapy reference card for oncology nurses at MNJ. It describes frequently administered chemotherapeutic drugs at MNJ, indications for their use, common side effects, and specific nursing considerations for each drug. I am grateful to Virginia and Dr Gayatri Palat (who is a consultant in Palliative Care at MNJ) for giving me the permission to use this blog to disseminate their work.

Health-Related Quality of Life in Children with Cancer

Historically, outcomes of children with cancer has been measured in terms of mortality, relapses and survival. As these QUANTITATIVE measures of life have improved in resource-rich countries, measurement of QUALITY OF LIFE (QOL) has become standard practice. For various reasons, resource-poor countries including India have under-used and under-reported these outcomes (Ref - Pandey, Psycho-Oncology, June 2004).

A recent paper reports health-related QOL outcomes in children with cancer from a physicians perspective (Ref - Chirivella et al, Indian J Pediatrics, Dec 2009). 45 patients and their physicians were recruited from two centres in Hyderabad. Using questionnaires, the physicians were interviewed for their assessment of the various HRQOL domains (sensation, vision, hearing, speech, mobility, dexterity, emotion, cognition, self-care, pain). Although its primary objective was a feasibility study, it does show an interesting (and not unexpected) observation of the pain domain having one of the lowest and most variable scores. This is in line with the recent report by Human Rights Watch which found that pain relief during palliation was sub-optimal in India.

A brief search of Medline did not reveal any other articles from India looking at health-related QOL in children with cancer. The efforts of the authors of this paper is laudable in this context. I wonder how the authors propose to progress from here?