Living in the Grand-Duchy of Luxembourg after a Stroke: Impact on Patients, their Families and their Quality of Life. Equality of Access to Care and Social Resources - AVC
Coordinating Institution:
Université du Luxembourg
Contracting Partner(s):
CRP-Santé
Other Partner(s):
Cellule d'Evaluation et d'Orientation de l'Assurance Dépendance ,
Ministère de la Famille et de l'Intégration ,
Ministère de la Santé ,
University of Luxembourg
From: 01/03/2007
To: 28/02/2011
Budget: 500,000.00€
Contact(s):
Baumann Michèle
Summary
Our research aims to characterise stroke patients in Luxembourg, describe the ongoing care they receive, assess the quality of hospital and rehabilitation services, and measure the quality of life of patients and informal caregivers, and their satisfaction with the services and resources used. All stroke patients hospitalized in Luxembourg from 1 July 2006 to 30 June 2007 were identified from the National Health Insurance Registry and their data were extracted. Informed written consent was obtained from the living patients and the National Research Ethics Committee and the National Data Protection Committee made a special dispensation for those who had died, enabling CES research nurses to collect clinical data from hospital records. The INSIDE-SPH research team contacted by telephone those patients, or a member of their family, to propose them a face-to-face questionnaire.
On acceptance, a letter of confirmation was sent followed by a visit to the residence. In such visits, the two investigators in charge of doing fieldwork obtained written consent and conducted separate interviews with the patient and the person he or she considered to be the main informal caregiver. Among eligible 796 stroke patients, 36% had died; 37% of the reminder gave access to their hospital medical records. Research nurses examined 479 medical records to confirm the diagnosis of first-event stroke and collect clinical data.
At the end of the participants’ research inclusion process, 219 first-event stroke patients were included, 61% of which already died. Reasons for non-inclusion were: recurrence of stroke (127), other diseases (127), follow-up hospitalization (4), and secondary exclusion (2). Among the 219 patients, 156 patients were still living in the community, they were contacted by phone, 16.0% declined the interview, 11.5% did not meet the inclusion criteria and 5.1% could not be reached by telephone. We made 105 (67.3%) appointments to interview patients and/or the main caregiver and we obtained 164 completed questionnaires, 100 from patients (54 men, 46 women, mean age: 66.8 years) and 64 from main informal caregivers (20 men, 43 women, 1 unknown, mean age: 60.7 years). We had 59 “patient-caregiver pairs” (this is the strong point of our data), 41 patients alone, and five informal caregivers alone.
Data were collected and the clinical database quality control is ongoing. The results of analyses of the literature and of the pre-investigations and intermediate exploitations have been presented in scientific reviews and conferences. The major analysis will be available in 2010.
Publications
- BAUMANN M, AÏACH P. Promotion de la santé et réduction des inégalités sociales de santé en Europe : une problématique complexe. (Exemple du projet FNR Accident Vasculaire Cérébral au Luxembourg). In: Willems H et al. (sous dir.), Manuel de l’intervention sociale et éducative. Fonds Social Européen, Université du Luxembourg, INSIDE, Ed. Saint Paul, Luxembourg, 2009 : 1195-1206.
- Baumann M, AÏACH P. L’aidant principal face à l’AVC d’un proche. Médecine 2009; 5(4):184-188. AÏACH P, Baumann M. An assessment of the geographical approach to health inequality. Critical Public Health 2010 [in press].