Hong Kong Neuro-oncology Society (HKNOS) Report for 2020/21: A New Era of Engagement

Reporters:

Joyce Chow, Department of Neurosurgery, Queen Elizabeth Hospital, Hong Kong

 

 

Peter Woo, Department of Neurosurgery, Kwong Wah Hospital

 

1.     Multidisciplinary Engagement of Neuro-oncology Health Care Professionals & Patient Support

2.      HKNOS Glioblastoma Registry

3.      Tumor-treating Fields (TTF) Pilot Subsidy Programme for Adult Glioblastoma Patients

 

Bringing Neuro-oncology Healthcare into Focus

 

The Hong Kong Neuro-oncology Society (HKNOS) was founded on the 25^th November 2011. In spite of the ravages of the COVID-19 pandemic, in the last 18 months the Society has redefined its role as a charity devoted to: 1. the professional development for those in the neuro-oncology healthcare community; 2. facilitating medical research in the field and 3. advocating for brain tumor patients and their caregivers in the public domain.

 

In 2021, we celebrated our 10^th anniversary by conducting several initiatives. They include the revamping of our official website (www.hknos.org.hk), designing patient-caregiver materials in collaboration with the University of California, San Francisco’s (UCSF) Brain Tumor Research Center and holding a symposium focused on the management of high-grade gliomas. To address the relative lack of Chinese language authoritative sources of information for brain tumor patients, the HKNOS also designed an introductory booklet to help relieve the uncertainties associated with being diagnosed with this condition. Electronic versions of these materials are now free for download from our website.

 

In our mission to advocate for brain tumor patients, the HKNOS is proud to become the co-signee of the International Brain Tumor Alliance’s (IBTA) Charter of Rights. This important document stipulates our goals for the quality of care that we wish to achieve for brain tumor patients. It is a living document that is reviewed annually and is meant to be a positive tool for all members of the international brain tumor community. The HKNOS was honoured to translate and edit the original English version into Chinese and the document is available for download from our Society and the IBTA websites (https://theibta.org/charter/translations/).

 

The HKNOS was also pleased to announce the establishment of the first and only Hong Kong Brain Tumor Patient Support Group in December 2020. Run by patients and their loved-ones, the group has helped to relieve the anxieties of the newly-diagnosed. It continues to be a valuable reliable source of advice and counselling beyond what can be offered from healthcare professionals. In 2022, the Society is also delighted to work with Rare Disease Hong Kong (formerly known as the Hong Kong Alliance for Rare Diseases, https://www.hkard.org/about) to conduct brain tumor educational activities for members of the public.

 

 

Striving to Perform Research with an Impact

 

In 2021, the first Hong Kong Glioblastoma Registry was created. The registry catalogues clinically relevant data for over 1000 patients from all seven of the city’s public hospitals spanning a 14-year period from 2006 to 2019. Since the follow-up rate of patients is exceeds 95% high and most eventually seek care in the public system, the Registry is currently one of the largest involving Chinese patients in the literature. The age-standardized incidence of glioblastoma is 1.0 per 100 000 and reflects how comparatively rare this tumor is compared to patients of other ethnicities. The Society is eager to share our findings with the wider ASNO community when peer-researched studies are published later this year.

 

 

Tumor-Treating Fields (TTF)/ Alternating Electric Field Therapy Hospital Authority Pilot Programme for Glioblastoma Patients

 

The HKNOS is excited to know that since January 2022, the Hospital Authority (HA), the largest public healthcare provider in Hong Kong, has agreed to offer TTF for selected patients as a pilot programme. Adults with newly-diagnosed glioblastoma and that have completed temozolomide concomitant chemoradiotherapy will have the chance to receive TTF entirely for free, being fully subsidized by the HA. The programme will recruit 14 patients up to April 2023 using a set of rigorous selection criteria. A review of their overall survival and quality of life will determine whether the subsidy programme can be continued or scaled up. A local real-world study is currently underway and hopefully the results will be encouraging. 

 

As the COVOD-19 pandemic continues to rage on, we wish members of the ASNO community to continue to stay safe and we wish to deliver our colloquial words of support: “add oil!”

Photo 1:

Program of the HKNOS Glioblastoma Management Symposium in November 2021

 

Photo 2:

HKNOS 10^th Anniversary Dinner in November 2021: Looking forward to working with Hong Kong’s next-generation of neuro-oncology experts

 

Photo 3:

The first and only patient-support group for brain tumor patients in Hong Kong established in 2021