Frequent appointments with the doctor, endless administrative tasks, financial cost… For 38% of patients suffering from chronic diseases, the burden of treatment is “unacceptable”, reveals a new French study.
For the World Health Organization (WHO), a chronic disease is a long-term condition that changes over time. In France, 20 million people would be affected. And not surprisingly, in addition to the disease, the ongoing treatment affects the daily lives of these people and their quality of life. According to a French study published in the journal Mayo Clinic Proceedings on October 13, for 38% of chronic patients, the “burden of treatment” is unacceptable.
Doctor Viet-Thi Tran and Professor Philippe Ravaud, from the Hôtel-Dieu AP-HP Clinical Epidemiology Center, followed 2,413 patients with “any condition requiring management (regular monitoring or treatment) of 6 months or more”. The latter answered questions online via the ComPaRe platform, the Community of Patients for Research, on their quality of life and the weight of their medical follow-up between January 1, 2017 and October 1, 2018. Result: 917 of the participants , or 38% of respondents said they felt “unable to continue the same investment of energy, time and money in health care throughout their lives”.
Because all this indeed requires an intense investment in terms of time, effort and attention, due to taking medication, continuous medical visits, endless administrative tasks, organizational needs, monitoring of medical recommendations or self-monitoring. “For example, a patient followed for type 2 diabetes is expected to devote an average of 143 minutes per day to their care,” notes theAP-HP in a press release.
A tool to assess acceptable symptoms
This is referred to as the “burden of treatment”. In question, according to the study, the regular care which never leaves the patients of respite to forget their affliction, the cost of the treatment, the organization of the medical appointments and analysis or the difficulty in the relations with the caregivers, sometimes if only to manage to contact them.
Faced with these results, the researchers want to try to prevent the exhaustion of patients by determining what constitutes an acceptable burden. For this, they have defined a practical tool called “State of acceptable symptoms for the patient”. The latter “could be useful to caregivers, patients and researchers in the context of care, quality assessments and clinical research”, specifies the AP-HP.
On the occasion of this publication, ComPaRe launches a call for participation to all patients followed for a chronic disease. Currently, 30,000 voluntary patients are already registered, but the researchers hope to eventually reach 100,000 people. And to conclude: “By participating in medical research via the secure site https://compare.aphp.frpatients advance medical research on their disease and make their voices heard”. To participate, simply register at the address mentioned and answer the online questionnaire.
Asthma, endometriosis, HIV, depression…
Examples of chronic diseases include non-communicable diseases such as
diabetes, asthma, chronic kidney failure, cardiovascular diseases, certain cancers, multiple sclerosis or endometriosis, transmissible diseases such as HIV or hepatitis C. Rare or orphan diseases, such as cystic fibrosis, sickle cell disease and myopathies are also part of the list, as are long-term mental disorders such as depression, bipolarity or schizophrenia.
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