Abstract :
[en] Due to the absence of communication, care for patients with disorders of consciousness (DoC) such as patients with unresponsive wakefulness syndrome (UWS) and minimally conscious state (MCS) is an important clinical and ethical issue, especially for pain assessment and management. In this survey we investigated the needs and beliefs of patients’ relatives and caregivers regarding pain assessment and management.
In collaboration with the DoC Special Interest Group (DoC-SIG) of the International Brain Injury Association (IBIA) we developed an online international survey available in 5 languages (English, French, Italian, Russian and Spanish) that was disseminated via the Centre du Cerveau2 and IBIA networks. The survey had 2 sections: 1) participants socio-demographic characteristics (e.g., age, gender, country of residence, nationality, religion, current work, years of experience with DoC patients) and 2) Information about knowledge and expectations on pain assessment and management of DoC patients (e.g., questions regarding pain perception in DoC patients, behavioral signs of pain, pain assessment tools, pain treatment). The survey lasted about 15 minutes and was adapted for each group (health care staff and family’s members).
Descriptive analyses (subject count and percentages) were used to describe categorical responses.
One hundred-three participants (68 females, 92 health professionals, 57 with more than 10 years of experience with DoC) responded to the survey. Preliminary results showed that among the healthcare staff, 86% extremely (n=40) or strongly (n=39) agreed that patients in MCS experience pain while this dropped to 59% (17 extremely, 37 strongly) for patients in UWS experience pain. 97% thought that pain assessment is extremely (n=60) or strongly (n=29) important for the management of DOC patients. Regarding pain assessment, only 40% of respondents claimed
to always (n=18) or often (n=19) use standardized and validated tools (Figure 1B) to assess pain and only 11% were extremely (n=3) or strongly (n=7) satisfied by these tools (Figure 1C). Twenty-six percent of the health professionals (n=24) were not familiar with the Nociception Coma Scale-Revised6,7, which is currently the only validated scale developed specifically for pain assessment in DoC patients. Seventy percent of the respondents used pharmacological treatments to manage pain in DoC patients (n=65), such as non-opioids analgesics (n=46), weak opioids (n= 38) or strong opioids (n=25). The majority of patient’s families thought that UWS (73%, n=8) and MCS (82%, n=9) felt pain and that its assessment is important (82%, n=9) (Figure 2A). 73% of them were very dissatisfied (n=6) or dissatisfied (n=2) with pain management of their relative and only 55% thought that clinicians rarely (n=3) or never (n=3) used appropriate tools.
These results highlight a lack of knowledge of families and clinicians regarding the tools available to assess and manage pain in this sensitive population. In the future, the number of respondents belonging to family members must be further increased to allow for more specific and comparative analyses, possibly using also a personalized painful stimulus.
Based on the answers, we aim to develop guidelines to improve pain management and assessments in this sensitive population and decrease psychological distress of health professionals, caregivers and families.
