One of the most interesting things about quality of life is that it is different for everyone. The World Health Organisation define it as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns."
So, not only is culture an important part of how a person thinks about their quality of life, but also what is important to them. For example, if a culture puts a lot of emphasis on spending time with family, a person who spends a lot of time at work may think they have a poorer quality of life. However, if their career is important to them or their community prioritises hard work, they might feel happier about their quality of life.
Simply put, quality of life is whether a person can live the life that they want to live. It’s not something most people think about day-to-day but, for doctors, it can be a daily balancing act. Would their patient be more able to enjoy their life if they took a new medicine that helped their anxiety, but made them feel sick all of the time? Or would they be better to not take the medicine, and live with their condition without feeling sick?
Selecting the right treatment
This medicine example is a bit oversimplified, but it does show a challenge for doctors. And, whilst they can make an informed decision to give a new medicine, sometimes their decisions might be irreversible.
Selecting a childhood cancer treatment can be one of these difficult and long-lasting decisions. Treatments can be harsh, and cause lifelong late effects (long-term problems as a result of cancer treatment). Doctors want to make sure that all of the cancer is gone, so their patient can live for many years to come. However, they also have a duty to make sure that the child can live a happy life, where they can go to school, meet friends, and do whatever else they want to do. Sadly, a lot of cancer treatments can have a big impact on quality of life, such as fatigue, memory issues, nerve pain and weaker bones.
CCLG’s ‘Living beyond cancer’ pack features 24 different leaflets that cover multiple different late effects of childhood cancer, showing just how many problems children surviving cancer can face.
It’s also important to make sure children have a good quality of life during their treatment. Treatment can last for months or even years – a long time for a child if they are not well enough to go to school, see friends or play. All of this is vital for a child’s physical, mental and emotional development.
But how can we know what their quality of life is?
If it’s difficult to find out an adult’s quality of life, it’s even harder to understand it for a child that may not understand the term, and might not even know how to explain what is important to them. There are questionnaires that doctors can use for children, but these are sometimes just adapted from adult questionnaires (so not suitable) or are too generic to assess childhood cancer-related issues.
A research team led by Dr Madeleine Adams has spent the past two years creating a brand-new quality of life assessment for children with sarcoma, a type of solid cancer that grows in bones and soft tissue.
Madeleine said:
Sarcoma in children varies a lot, with many different subtypes and different places the cancer grows. Treatment can also be very different between patients and late effects are very common. There is concern that generic quality of life measures can’t detect specific sarcoma-related issues, such as those related to surgery, for example to the limbs, or radiotherapy to the head and neck.
To get the final quality of life measure, called SAM-Paeds, Madeleine’s team had a four-stage process. They met with parents and patients to see what sarcoma-related problems were impacting their quality of life, which the researchers used to create the first draft of the SAM-Paeds measure.
She said: “The initial transcripts identified lots of important themes related to diagnosis, physical and emotional effects, and how sarcoma affects family and education. We started with around 150 items, which we reduced to 30 in the current version. One thing that we didn’t expect was that many of the themes were positive, around resilience and feeling proud.”
The next steps
Now that her project is complete, Madeleine is starting to share her work. Her scientific paper, which covers her team’s findings in the patient and parent interviews, will be published soon.
The researchers are also in discussions with clinical trials, and hope that the SAM-Paeds measure will start to be used in appointments to show which patients need extra help. The measure is going to be included into one of the biggest childhood rhabdomyosarcoma clinical trials, FaR-RMS, where it will help researchers discover more about the effects of potential new treatments.
Madeleine’s project designed SAM-Paeds as the first disease-specific quality of life measure for children with sarcoma, making it perfect for use in these clinical trials. She believes it is important that doctors can understand how new treatments affect children, not just whether they kill cancer. Only then can doctors make fully informed treatment decisions.
If you're interested in finding out more, you can read about Madeleine's project.
Ellie Wilkinson is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters.
You can find Ellie on Twitter: @EllieW_CCLG