COGNOS. Care for people with Cognitive dysfunction A National Observational Study. Professor Dr Jan De Lepeleire COGNOS members

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COGNOS Care for people with Cognitive dysfunction A National Observational Study Professor Dr Jan De Lepeleire COGNOS members Luxembourg Alzheimer Europe 2010

The Careplan in Belgium Requirements for reimbursement of cholinesterase inhibitors in Belgium: Diagnosis of AD by a specialist MMSE 10-24 badl, iadl, GDS, NPI-Q CT scan/mri Careplan (not further specified by government)

Objectives COGNOS Goal of the non-interventional, nationwide observational study: To document the diagnostic, therapeutic and care management of a cohort of patients diagnosed with Alzheimer s disease in specialist care from a specialist s and a patient s perspective Focus on content and implementation of the careplan, part of the reimbursement procedure for cholinesterase inhibitors. Study the implementation of the proposed careplan by the patients and patient s satisfaction with care.

Study Design: baseline visit

Study design: follow-up visit

Inclusion/exclusion criteria Patient inclusion criteria were: Newly diagnosed with degenerative dementia of the Alzheimer type as the primary diagnosis Willingness to participate in the study and to complete the questionnaires, confirmed by written informed consent As the study takes patients with newly diagnosed AD (usually mild to moderate) as a starting point, patients who are institutionalized for AD or any other mental or physical condition will be excluded from participation

Study population and investigators # patients BAS 720 BQAS 439 FAS 452 FQAS 243 Neurologists 72 Geriatricians 13 # participating physicians BAS: Baseline analysis set BQAS: Baseline questionnaire analysis set FAS: Follow-up analysis set FQAS: Follow-up questionnaire analysis set

Data collected SPECIALIST: Initiation of visit Reason for visit (cognitive, behavioural, functional) Communication of diagnosis (use word Alzheimer?) Tests performed Collaboration with other HCP/Specialists Medications chosen (AChEI, antidepressants, benzo s, ) Care plan: what was proposed; in collaboration with whom? PATIENT: Situation at home Perception of diagnosis Activities of daily life Quality of life (ACSA = visual analogue scale) Did you need help filling out questionnaire?

BAS Initiation of first consultation by: % All Geriatrician Neurologist By patient 6.3 4.4 6.7 By family/caregiver 42.4 36.0 43.9 Referred by GP 41.1 41.2 41.1 Referred by specialist 8.0 13.2 6.7 Other 2.2 5.1 1.5 First consultation was mainly initiated by family/caregiver and GP

BAS

BAS Reason for first consultation: % All Geriatricians Neurologists Cognitive problems 87.4 81.6 88.8 Functional problems 18.7 30.9 15.8 Behavioural problems 18.4 31.6 15.3 Other 8.6 13.2 7.6 p<0.05 p<0.0001 p<0.0001 P<0.05 Patients consulted mainly for cognitive problems, then for functional or behavioural problems. Consultation for functional and behavioural problems were twice more frequent in geriatric than in neurological care.

BAS

BQAS Perception of life of the BQAS using the Anamnestic Comparative Self Assessment (ACSA) Score Score Mean Geriatrician 4.9 Neurologist 5.3 Perception of life score at baseline was on average 5.2, there was no difference between care settings.

BQAS

BAS MMSE categories at baseline visit % All Geriatrician Neurologist <14 11 16.9 9.7 15-20 33.3 41.2 31.4 21-26 50.9 39.0 53.7 >26 4.8 2.9 5.2 Mean 20.5 19.4 20.7 p<0.05 Patients had their first consultation with a mean MMSE of 20. Patients in neurological care presented with a higher MMSE than patients in geriatric care

BAS

BAS Treatment given according to MMSE % All <14 15-20 21-26 >26 ChEIs 71 63.3 71.8 72.8 67.6 Memantine 1.3 7.6 0.0 0.8 0.0 Herbals 2.2 2.5 0.8 3.0 2.9 Antioxydants/Vit E 1.5 0.0 0.4 1.9 8.8 Antipsychotics 8.3 12.7 9.2 6.9 8.8 p<0.0001 p<0.05 Anticonvulsants 1.7 1.3 2.5 1.1 2.9 Antidepressants 32.9 21.5 34.5 34.6 32.4 Sedatives/anxiolytics 24.9 26.6 28.6 22.3 23.5

70% of patients were prescribed cholinesterase inhibitors, there was no difference between MMSE categories. Memantine was prescribed in only 1.3% en this mainly in severe dementia. Antidepressants were prescribed in 1/3 of patients with no difference between severity. Sedatives/anxiolytics were prescribed in 1/4 of patients with no difference between severity.

BAS

BAS Other professionals involved in the care plan % All Geriatrician Neurologist Other prof 85.5 95.6 83.1 GP 67.4 64.0 68.2 Geriatrician 6.9 11.0 5.9 Neurologist 4.3 14.0 2.1 Psychiatrist 2.9 8.8 1.6 Psychologist 23.9 41.2 19.9 p<0.05 p<0.05 p<0.05 p<0.05 p<0.05 p<0.05 Occupational therapist Home care organisation 20.4 54.4 12.4 4.9 12.5 3.1 p<0.05 p<0.05 Geriatric patients had more often other professionals involved in their care plan. Mainly GPs, psychologists and occupational therapists were involved in the careplan.

BAS

BAS Services advised in the care plan % All Geriatrician Neurologist Services advised 68.3 62.4 77.2 Home care by nurse 24.5 35.3 21.9 Home care by professional care helper 22.1 27.9 20.7 Social worker 8.8 10.3 8.5 Cognitive training 20.4 35.3 16.9 Behavioural training 3.1 7.4 2.1 Physical therapy 10.2 20.6 7.8 Psychological support 5.6 8.1 9.3 Day care 9.1 8.1 9.3 Institutionalisation 9.5 20.6 6.9 Patient support group 9.9 9.6 10.0 p<0.05 p<0.05 p<0.05 p<0.05 p<0.05

Services were advised in 68% of patients. More geriatric than neurological treated patients were advised extra services. Mainly home care by a nurse or professional care helper were advised, or cognitive training.

FAS Score CGI-c in the FAS Mean Improvement 44.4% Geriatrician 3.6 Neurologist 3.6 No change 34.3% Deterioration 21.2% CGI-c was on average 3.3, there was no difference between care settings. Almost 80% of patients were improved or stabilized.

FQAS Perception of life score of the FQAS Score Mean Geriatrician 4.8 Neurologist 6.1 Perception of life score at follow-up was on average 5.8. The score was significantly higher in neurological than in geriatric care. The mean score increased significantly (p=0.0013) from baseline (5.3) to follow-up (5.8).

FQAS

FQAS Sufficient professional help received according to family/patient: % BQAS n=439 FQAS n=243 By family physician 91.8 98.6 By nurse at home 73.4 94.2 By professional care helper 64.3 84.6 By family/friends 77.8 93

FQAS

FAS Principal reason for nursing home placement % All Geriatrician Neurologist Patients physical condition 43.5 57.1 32.4 Patients cognitive condition 58.1 71.4 47.1 Patients behaviour 29.0 35.7 23.5 Situation became too burdensome to caregiver 41.9 35.7 47.1 Other 11.3 7.1 14.7 Patient s cognitive condition was the most frequent reason for NHP, followed by his physical condition and the difficult situation for the caregiver.

FAS

Link between reason for first consultation and institutionalisation Patients with functional and behavioural problems are more likely to be institutionalized

Probability of being institutionalized: Functional problems Behavioural problems Cognitive problems 1.9 x 2.6 x 0.5 x

Conclusion The COGNOS study demonstrates that measures taken by the governmental institution to provide reimbursement for specific medication (for example requesting a specific and individualized care plan ) can lead to better, holistic care of a patient. N.B.: The content of the careplan is not further specified by the government but its requirement itself for the reimbursement of medication, represents the beginning of a complete and therefore specified careplan.