Doświadczenia życia z epilepsją oporną na leki i potencjalna rola opieki neuropaliatywnej
Perceptions of living with drug-resistant epilepsy and the potential role of neuropalliative care
W skrócie
Badanie pokazuje, że pacjenci z epilepsją oporną na leki często czują się dotknięci chorobą w swoim życiu osobistym i społecznym, martwią się o utratę niezależności i potrzebują więcej informacji od lekarzy. Po poznaniu czym jest opieka paliatywna - czyli wsparcie skupiające się na łagodzeniu objawów i poprawie jakości życia - około połowa pacjentów uważała, że mogłaby im pomóc, szczególnie w trudnych momentach choroby. Badacze zaproponowali, że dodanie opieki paliatywnej do standardowego leczenia epilepsji mogłoby poprawić komunikację z pacjentami i lepiej wspierać ich w radzeniu sobie z chorobą.
Oryginalny abstract (angielski)
OBJECTIVES: To assess quality of life factors in persons with drug-resistant epilepsy (PWDRE) and determine if PWDRE would be interested in palliative/neuropalliative care involvement. METHODS: For this qualitative study, adults living with DRE (n=20) participated in semi-structured interviews regarding personal identity, relationships, medical care, and needs related to living with epilepsy. Participants were introduced to the term "palliative care" (PC) and queried on its potential usefulness within their regular medical care. Responses were coded thematically. Clinical data were extracted from medical records. RESULTS: Most participants felt DRE had significantly affected their perception of self, family, and social life. Ongoing concerns included loss of independence and uncertainty related to their epilepsy. The main sources of strength were close relationships and faith. Most (90%) expressed a desire for more information and education from their medical providers about epilepsy, the diagnostic process, medical and surgical therapies, and psychosocial issues. Most (80%) had not established advance directives. Prior to this study, few (20%) could accurately define PC. After being educated about PC, about half thought it could be useful in their care, especially in times of worsening seizures, before surgery, or when confronting major life decisions. CONCLUSIONS: Many PWDRE expressed an interest in the potential benefit of palliative care involvement in addition to their routine medical care. Gaps in communication, complex symptom management, and advance directives could be addressed with inclusion of PC approaches and collaboration with a PC team, though further research is needed to demonstrate benefit.