A descriptive analysis of the Swedish palliative research network - PANIS

Margret Skuladottir, MD, Malmö SAHStaffan Lundström, MD, Stockholms Sjukhem

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Aim of the study

To survey all participating units concerning:

Organization Patient selection Contents of care Documentation

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Methods

Questionnaire with 38 questions designed. Pilot test. Sent to all 43 units by e-mail in December -04. Completed by the local members of the

network. 42 units answered Answers analyzed in Excel database.

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Organisation-affiliationall 42 units replied

Independentunit 28%Geriatric unit 23%Oncology12%Other 37%

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Starting year for units

01234567

1982

1984

1985

1987

1988

1989

1990

1991

1992

1994

1995

1996

1997

1998

1999

2000

2001

2002

2003

Starting year

Num

ber o

f uni

ts

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The doctors specialitiesall 42 units replied

0

5

10

15

20

25

Num

ber o

f uni

ts

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Organizationall 42 units replied

29 24 166

Number of units with respective service

0%

10%

20%

30%

40%

50%

60%

70%

80%

Advanced homecare

Hospice / inpatient Day-care Councelling team

Serie1

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Numbers of doctors per patient

Number of unitsMedian Range who answered

Hospice / in-patient not connected to advanced home care 0,11 0,05-0,19 8 of 10

Advanced home care not connected to hospice / in-patient 0,05 0,03-0.1 14 of 15

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Number of nurses per patient

Number of units Median Range who answered

Hospice / hospital 0,93 0,78-1,9 11 of 24Advanced home care 0,39 0,1-0,54 19 of 29Hospice / in-patient and 0,3 0,07-0,7 7 of 14advanced home care

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Number of units having different occupational groups

As members of As consultants to the team the team

Staff nurse (usk) 24 0Physiotherapists 32 5Occupational therapists 31 4Sociologists 33 1Psychologists 0 6Priests / deacons 13 14Dietician 8 14

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Diagnosis Cancer mean 90% of all patients

(range 70-100% )

Non-cancer mean 10% (range 1-10%) Heart failure <1% - 10%CPD <1% - 14%Neurological diseases <1% - 6%HIV / AIDS <1% - 2,5%

45% of the units include patients < 18 years.

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Number of patients or ”beds”

Reply-rate Median Range Total

Advanced home care 28 out of 29 40 15-120 1336Hospice/in-patient 24 out of 24 8,4 2,5-37 274Counselling team 14 out of 16 >375

Total number of beds >1985

12 out of 16 counselling teams had no limitations regarding number of patients able to enrol.

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Mean duration of care

Reply-rate Mean Range

Advanced home care 24 out of 29 72 days 20-214 daysHospice / in-patient 15 out of 24 15 days 4-40 days

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Number of deaths per year

Reply-rate Median Range Total

Advanced home care 26 out of 29 60 12-163 1731Hospice / in-patient 19 out of 24 67 15-400 2091Counselling team 4 out of 16 156 75-250 625

Total number of deaths per year 4447

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How many of the 42 units used symptom assessment tools ?

0

5

10

15

20

25

VAS ESAS

Yes regularlyYes occasionallyNo never

41 out of 42 units replied

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Teaching and research

93% of units do teaching 24% of units have some form of research activity.

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Documentation

Paper 29% Computer 70%

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Discussion Data collection was done using a questionnaire

developed by the authors. High response rate A few questions were difficult for some units to

answer due to the structure of their databases.

Large variation between the units might reflect: different local needs and conditions, differences in patient selection in the units, differences in the definition of services.

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Conclusions Still largely focused on cancer

20% of cancer deaths in Sweden within PANIS

Large variation between different units (e.g. duration of care).

PANIS provides a growing database, facilitating research in palliative care.