New thesis: Disability and health-related quality of life in patients with amyotrophic lateral sclerosis, and caregiving experience from the perspective of next of kin

Hi Petter Sandstedt, PhD-student at the Division of Physiotherapy. On 14 December you will defend your thesis "Disability and health-related quality of life in patients with amyotrophic lateral sclerosis, and caregiving experience from the perspective of next of kin", what's the main focus of the thesis?

The main focus is on disability and health-related quality (HRQL) of life in patients with amyotrophic lateral sclerosis (ALS), and on HRQL and caregiving experience in next of kin to patients with ALS.

Which is the most important results?

That regardless off disease severity, fatigue, anxiety, depression and pain were commonly and concurrently present in patients with ALS. Further that high disease severity, fatigue, anxiety and/or depression, low frequency of social and lifestyle activities, weak coping capacity and mechanical ventilator use were associated with HRQL in patients with ALS. Both positive and negative caregiver experiences were reported by informal caregivers. Positive caregiver experience was associated with better HRQL, while negative caregiver experiences were associated with worse HRQL. Being next of kin to patients with ALS undergoing ventilation via tracheostomy (breathing thru a tube in the throat) involved experiences of a turbulent care process aiming to extend life, a struggle to cope with the strains of everyday life and conflicting roles as next of kin and career.

How can this new knowledge contribute to the improvement of people’s health?

This knowledge can be used so that person-centered care can be applied at the right time. Furthermore, to adopt person-centered care, not only for patients but also for their informal caregivers.

What's in the future for you? Will you continue with research?

After my dissertation I will have a few weeks off before I’m going back to my employment as a physiotherapist at the Karolinska University Hospital. I´m not sure whether I will continue doing research, most of my thoughts are right now on the 14th of December which is the date for my dissertation. But of course, it would be a waste not using all the knowledge I gained during these four years.