Health Care Professional (HCP) Tool Kit

“A tureen of tragedy was best allotted by the spoonful.
Only a few patients demanded the whole at once; most needed time to digest”
Paul Klanithi, “When Breath Becomes Air”
There are a number of validated tools that exist for assessing patients, yet a few that are most useful for patients with brain tumours and their families. Each tool is designed for different stages of living with a brain tumour, yet appropriate for any one person. When assessing your clients, it is important to ask questions, yet the most important question to ask is: 
"What do I need to know about you as a person to give you the best care possible?" 
This question is a simple, open-ended question also known as The Patient Dignity Question (PDQ)  and we encourage you to incorporate into your daily practice. This question helps to identify concerns and stressors that may be important to consider when planning and delivering someone’s care and treatment.
 

Tips & Suggestions

It can be a challenge to complete a thorough assessment of a patient, and identify areas of need, when at the end of it all you may have limited resources and options to offer, both within the hospital and the community. We know you want to provide meaningful support, therefore, give some thought to what you are assessing and how you can follow-up accordingly.
 
Be mindful as to how you will respond to certain answers. 
 
Some questions you may ask yourself include:
 
  • “What is our ability to act on concerns that may be identified?” 
  • “Do we have the resources in place?” 
  • “Who can I collaborate with to best support the patient and their family?” 
  • “What other programs can I refer my patient and family to?”

Below are some relevant tools you may find useful when assessing the needs of your patients and caregivers; these resources are relevant and useful to the brain tumour population. These tools are already validated, easy to use and can be used in a variety of settings, disease processes and stages. 
 

Useful tools

The following may be useful resources for you. Click on the relevant link to be taken directly to that section:

FACT-Br 

The Functional Assessment of Cancer Therapy-Brain (FACT-Br) is a quality of life (QOL) assessment tool that was originally developed for use in patients with primary brain tumours. The tool has also been used to assess QOL in patients with metastatic brain tumours, and is validated for functional assessment. The responses to this questionnaire can help healthcare providers focus on the concerns most significant to the patient and adjust their approach to care appropriately. 
 

McGill Quality of Life Questionnaire 

The McGill Quality of Life Questionnaire (MQOL) is a 16-item multi-dimensional tool that measures four broad domains: physical, psychological, existential well-being and support and is relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire can help identify patient concerns and will help guide your conversations with the patient and / or their family. 
 

Caregiver Strain Index (CSI) 

Family caregivers play an important role and also feel the difficulty and stress of living with their loved one’s diagnosis; it is important to assess how they are managing too. 
 
The Caregiver Strain Index (CSI) is a tool that can be used to quickly identify families with potential caregiving concerns and helps to measure strain related to care provision. This tool can help identify what type of additional supports families or caregivers may require.
 

Care Map for patients with High Grade Gliomas

Along with our Partners at Sunnybrook Health Sciences Centre, we have developed this unique resource for those affected by a high grade glioma. 
 
Walk the path of the brain tumour journey on the map, and then find more detailed explanations of the corresponding stages of the journey in the pages that follow it. Learn more...
 

Tips for Radiation Therapists Working with Patients undergoing Brain Radiotherapy

As radiation therapists, we are at the front line of the delivery of technical cancer care, but are also uniquely positioned to offer supportive, empathic care – ‘high touch’ care as well as ‘high tech’ care. In an era of personalized medicine, we can also work to deliver personalized attention to each patient. Each will have unique needs in terms of side effects, emotional distress and coping, navigating the system, and otherwise juggling their diagnosis and other aspects of their life. For patients receiving radiotherapy for brain tumours, there are considerations to help provide the best experience possible.

This document contains a list of things that can be kept in mind when working with people receiving brain radiotherapy. It is hoped that it can serve as a valuable reflective tool for healthcare professionals.

 

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