Abstract
Background/aims: Patient information can be used to optimize care
either for the individual patient and a specific hospice, and to perform
research. A datahub and dashboard were built to collect and share
patient record data.
This feasibility study aimed to evaluate the completeness of data.
Methods: A feasibility study was performed using a mixed methods
approach.
Patients admitted to participating hospices enrolled, using anonymized
patient record data. Data collected were patient characteristics,
admission information, illness characteristics, multidimensional
assessment and symptom and concerns(S&C). The Utrecht Symptom
Diary four dimensional, a validated multidimensional PROM was used
to assess physical and psychological symptoms and social and spiritual
concerns. The primary outcome was completeness of data analyzed
descriptively.
Results: 476 patients, 272 women (57%) were enrolled (1/21/2021 –
05/31/2022). Most patients had cancer (63%) and were admitted for last
resort (89%). Patients were admitted for median 16 days, 61<3 days and
22 >90days.
Completeness: Patient gender and date of birth were complete in all
records, marital status in 96%, and philosophy of life in 77%. Diagnosis
information was complete in 98% of records, estimated life expectancy
in 91%. End of life information was missing in 88 – 95%.
A multidimensional assessment was complete for the physical, psychological, social dimension. The existential status was missing in 20%. The
values, wishes and needs were less complete in all dimensions, the existential dimension not described 40% of first care plans.
2133 USD were completed by 317 (67%) patients,7USD/patient on
average.
Symptom burden: Patients suffered from 7.7 s&c concurrently, 4.3
scored >3. The three most intense s&c: letting loved ones go(6.1),
fatigue(5.7), loss of appetite(5.4). Depressed mood(3.4), anxiety(3.3)
and nausea(3) were the least intense s&c.
Conclusions: Data from patient records provide information to optimize
clinical care, pinpoint the existential dimension as a starting point.
either for the individual patient and a specific hospice, and to perform
research. A datahub and dashboard were built to collect and share
patient record data.
This feasibility study aimed to evaluate the completeness of data.
Methods: A feasibility study was performed using a mixed methods
approach.
Patients admitted to participating hospices enrolled, using anonymized
patient record data. Data collected were patient characteristics,
admission information, illness characteristics, multidimensional
assessment and symptom and concerns(S&C). The Utrecht Symptom
Diary four dimensional, a validated multidimensional PROM was used
to assess physical and psychological symptoms and social and spiritual
concerns. The primary outcome was completeness of data analyzed
descriptively.
Results: 476 patients, 272 women (57%) were enrolled (1/21/2021 –
05/31/2022). Most patients had cancer (63%) and were admitted for last
resort (89%). Patients were admitted for median 16 days, 61<3 days and
22 >90days.
Completeness: Patient gender and date of birth were complete in all
records, marital status in 96%, and philosophy of life in 77%. Diagnosis
information was complete in 98% of records, estimated life expectancy
in 91%. End of life information was missing in 88 – 95%.
A multidimensional assessment was complete for the physical, psychological, social dimension. The existential status was missing in 20%. The
values, wishes and needs were less complete in all dimensions, the existential dimension not described 40% of first care plans.
2133 USD were completed by 317 (67%) patients,7USD/patient on
average.
Symptom burden: Patients suffered from 7.7 s&c concurrently, 4.3
scored >3. The three most intense s&c: letting loved ones go(6.1),
fatigue(5.7), loss of appetite(5.4). Depressed mood(3.4), anxiety(3.3)
and nausea(3) were the least intense s&c.
Conclusions: Data from patient records provide information to optimize
clinical care, pinpoint the existential dimension as a starting point.
| Original language | English |
|---|---|
| Pages (from-to) | 65 |
| Number of pages | 1 |
| Journal | Palliative Medicine |
| Volume | 37 |
| Issue number | S1 |
| DOIs | |
| Publication status | Published - 7 Jun 2023 |