Living more or living better?

//Living more or living better?
Portrait of happy little Caucasian boy embracing his senior grandfather, looking at camera and smiling. Senior man looking at grandchild

“Quality of life”. Today, we will start by citing a phrase that is commonly used in daily conversations, in the media, and in advertisements. It is a broad concept that is related to emotions, perceptions of well-being, satisfaction and achievement of goals, according to the parameters of a cultural context [1].
The concept of “quality of life” was introduced in medicine more than three decades ago, focusing the goal of medical care on living better, instead of living longer. Doctors define “health related quality of life” as the patient’s perception of the impact of the disease and its consequences on his/her own life.

There are different scales to measure quality of life, of which patients have been asked about through questionnaires:

  1. Physical state: they evaluate, for instance, their ability to walk, to move or the presence or not of pain.
  2. Psychological state: they indicate if they have depression, anxiety or worries.
  3. Intellectual state: they evaluate their ability to concentrate or remember things.
  4. Functional aspects: they determine their ability to dress, clean, eat and perform other daily activities.
  5. Social relations: they answer if, in public, they feel comfortable or not, supported or not, by friends and relatives.

These scales offer quite a complete and inclusive “picture” of different dimensions of life. They are subjective and individual because symptoms of disease will impact each person in different ways. For example, a person with Parkinson’s disease and rest tremor in the left hand may not give this tremor any importance and thus perceive an excellent quality of life. However, another person with the same tremor could find this symptom disabling because personal circumstances may differ. For instance, if this person had a job working face to face with clients and had to leave the job, we would expect worse scores in the health-related quality of life scales.

The design of these questionnaires is a complicated and long process and must be validated in different populations and through multiple statistical tests. But this effort is well worth it. Why? Because with these scales patients can have their voices heard, they can finally describe their state of health from their own point of view.

As a neurologist, I treat movement disorders and it is not uncommon to have conversations such as the one that follows:
– Neurologist: The new medication has been very good for you. Wonderful! You walk faster and you are more agile. Much Better!

– Patient: That is what you say but I feel terrible. I feel so tired that I do not want to leave my house.

listen to me

The patient claims to have his/her voice heard!

Many times, what we perceive from the outside with our clinical exams and what the patient feels can be very different If we do not listen to patients, we can miss many important points. The truth is that neurological diseases are very complicated and, in many cases, physical state is not what most affects the patient [2]. By multiple studies, we know that depression is the most disruptive symptom in the life of any person. Health- related quality of life takes into account the whole person and it is an excellent measure to know how the patient is really doing, beyond the doctor’s perception.

The patient-physician relationship is another important topic, as well as the “negotiation” of treatment strategies. These types of questionnaires on quality of life try to be objective, and provide specific scores for that dialogue that takes place between the doctor and the patient on the benefit or not of different treatments on quality of life.

Until a few years ago, clinical trials investigated the effect of new molecules on movement disorders and were designed to find out if drug A was better than drug B to improve mobility. Nowadays, most trials aim to investigate the effects of molecules on quality of life, which has marked a radical change. This fact has also meant an advance in the mentality of the pharmaceutical industry and of neurologists who, finally, are changing their research focus on the patient and their well-being, measuring how he or she perceives it from his/her own perspective. After all, what most concerns people when they consult and seek treatment for their illness is to improve their quality of life.

[1] Martinez Martin, P. Calidad de vida relacionada con la salud en la Enfermedad de Parkinson. Ars Medica. ISBN: 9788495670212.

[2] Martinez-Martin P, Rodriguez-Blazquez C, Kurtis MM, Chaudhuri KR; NMSS Validation Group. The impact of non-motor symptoms on health-related quality of life of patients with Parkinson’s disease. Mov Disord. 2011 February 15;26(3):399-406.

 

This article was originally written in Spanish by Dr. Mónica Kurtis and can be found in her blog: https://neurofriendly.org/.

We thank Dr. Kurtis for helping us with this English version and Marta Burgos from Madrid Parkinson Association (Facebook, Twitter) for taking the initiative to publish this article on ICT4Life blog.

Improving the quality of life of patients with Parkinson’s disease, Alzheimer’s disease and other dementias is the main purpose of the ICT4Life Project, using technology to achieve this goal.

Picture created by Katemangostar – Freepik.com

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