Poster round (P09; Author PhD Barbara Fuchs, Chiesi Pharma AB):
Oppsummering:
Hvilke udekkede behov og utfordringer har mennesker som lever med KOLS, hvilken innvirkning har diagnosen KOLS hatt på dem, hva synes de om behandlingen de får og til slutt: hva ville de ønsket seg om de kunne trylle? Teamet bak HOPE-studien hadde som mål å gjennomføre semistrukturerte intervjuer med personer fra åtte europeiske land, inkludert Danmark og Sverige, for å finne ut dette.
The human factor – from insights to needs of persons living with COPD
Symptoms leading to diagnosis
Scichilone et al ran a study1 of semi-structured interviews with sixty-two persons living for at least six months with a diagnosis of COPD conducted by human factors experts to investigate their perspectives and requirements. The results show that difficulty breathing and coughing were the most frequent symptoms leading to diagnosis. The majority of participants (58%) felt negatively affected by the diagnosis as it reduces their ability to be active, and to participate in social life and hobbies. When living with the disease, reduced physical ability, challenges to mobility, and breathing problems were most bothersome. Some participants described a positive impact of the diagnosis, being able to reduce or even stop smoking after receiving more information, smoking cessation treatment, or quitting for a family member and the threat of death.
Treatment: influence, adherence and training
Most participants (67%) report that they were not involved in the selection of their present treatment. Feelings connected to their treatment were mostly positive or neutral. The participants also revealed their best strategies to remember to take their medications, either in conjunction with other medicines, routines or habits such as tooth brushing. However, some also reported that feeling unwell prompts them to take their medication.
Persons living with COPD report that information about their treatment was provided to them in training provided by health care. Thirty-one percent of participants revealed that they did not receive any training about their treatment.
Sources of information and support
Information was collected by family and friends, as was it collected online. Online sources of information felt not trust-worthy, and there was also an unwillingness to read more about their condition due to fear.
To improve their situation, persons living with COPD would like to have easier access to health care personnel, physiotherapy, smoking cessation support, workshops for families and friends to increase understanding for the disease, among other.
The ultimate wish
When asked “If I had a magic wand, I´d wish for…?”, most persons living with COPD were clear in their answer: TO FIND A CURE.
Barbara Fuchs
Medical Manager, Chiesi Nordics
Reference:
- Scichilone, N., Whittamore, A., White, C. et al. The patient journey in Chronic Obstructive Pulmonary Disease (COPD): a human factors qualitative international study to understand the needs of people living with COPD. BMC Pulm Med 23, 506 (2023). https://doi.org/10.1186/s12890-023-02796-8
8659-18.06.2024