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Table 1 Outcomes of the BEVOR trial grouped by data sources, and structural data of participating NHs. Caption: 3CP Care consistency with care preferences, DPOA durable power of attorney, EMS emergency medical services, Y/COB year and country of birth, NH nursing home, No. number of items, R (D/O) relevance (domain/overall), according to Sudore et al. [6]

From: Effectiveness of a complex regional advance care planning intervention to improve care consistency with care preferences: study protocol for a multi-center, cluster-randomized controlled trial focusing on nursing home residents (BEVOR trial)

Structural data of participating NHs; cross-sectional and retrospective survey; source: NH records

  

Parameter

No.

item example(s)

  

residents

55

no. of residents in past 12 months /on day of data collection, respite vs longterm care)

  

nursing staff

no. of registered/assistent/hired nurses; no. of full equivalents; no. of palliative care experts; total sick leave days per year

  

palliative care

palliative care concept in place; active collaboration with palliative care services

  

hospice care

collaboration with hospice care services

  

ethics consultations

established; number in past 12 months

  

general practioner

no. of general practioners

  

co-payment

defined private co-payment for residents

Data Collection 1 (DC-1): Anonymous data of all residents, aggregated on nursing home level; collected at baseline (t0), end of intervention run-in period (t1) and at the end of observation period (t2)

DC-1a: Clinical and ACP data of participating NHs instrument; cross-sectional and retrospective survey; sources: NH records

Domain

Subdomain(s)

Outcome

R (D)

R (O)

No.

item example(s)

Health Care Outcomes

care utilisation constructs

hospitalisation

1

17

2

rates; total hospital days

cardiopulmonary resucitation

11

38

2

attempted; discharged alive

feeding tube 

11

38

2

in place; in use

deaths

5

21

2

number; place of death

Action Outcomes

communication and documentation/ patient and surrogate

surrogate decision maker: decision and documentation

1;2

2;3

2

documented; type (guardian vs. DPOA)

advance directive (by proxy)

6;7

9;10

4

documented; last update; state-ment regarding hospitalisation; signature of resident

advance order for emergency treatment

4

7

3

documented; last update; signature of resident

Communication and documentation/ values and preferen-ces constructs

surrogate agrees to take on role

3

12

1

surrogate's signature documented

medical records contain ad-vance care plan

7

10

2

Adance directive (AD) or AD by proxy in medical record

medical record contains physician treatment orders 

4

7

1

Any POLST equivalent according to given definition

Data Collection 2 (DC-2): Individual data of residents who have given informed consent; collected at baseline and during observation period (t1-t2).

DC-2a: Cross-sectional and retrospective survey; sources: NH records, GP records, hospital records, EMS records

Domain

Subdomain(s)

Outcome

R (D)

R (O)

No.

item example(s)

n.a.

sociodemographic data; after death data

14; 8 

Gender, Y/COB, migration, professional degree, move-in date, days since moving in at start of survey; deceased, date of death, insurance, marital status, religion, care level

Health Care Outcomes

care utilisation constructs

hospitalisation

1

17

3

number; total hospital days

visits of hospital outpatient services

  

1

number

cardiopulmomary resucitation

  

2

attempted

intensive care unit

4

21

1

days

artificial ventilation

  

1

hours

feeding tube (PEG)

  

2

insertion; in place

deaths

5

21

2

number; place of death

EMS transports

  

1

number; kind of transport; emergency physician

general practioner visits (NH)

  

1

number

referrals to specialists

  

1

number (by specialty)

medication

  

5

antibiotics/opioids

palliative care services delivered

9

29

2

no. (general/specialised)

health status and mental health

quality of life (resident capable of self-rating)

4

53

24

WHO-QoL-old German Version (Winkler et al. 2016)

quality of life (resident uncapable of self-rating)

n.a.

n.a.

37

Qualidem (Hüsken et al. 2016)

Domain

Subdomain(s)

Outcome

R (D)

R (O)

No.

item example(s)

Action Outcomes

communication & documentation/ surrogate

surrogate decision maker

1;2

2;3

2

documented; type (guardian vs. DPOA)

communication & documentation/ values&preferences

advance directive

6;7

9;10

15

date; form; publisher; content/preferences if stated for specific given scenarios

advance order for emergency treatment

4

7

15

date; form; publisher; content/preferences if stated for specific given scenarios

advance directive by proxy

6;7

9;10

9

documented; formal details; content/preferences if stated for specific given scenarios

surrogate agrees to take on role

3

12

1

surrogate's signature documented

discuss values and care preferences with clinicians

5

8

1

elicited in chart review/ in interviews after potentially life-threatening events

discuss values and care preferences with surrogate and/or family&friends

9

35

1

surrogate's and/or family's /friends' signature documented

medical records contain ad-vance care plan

7

10

2

Adance directive (AD) or AD by proxy in medical record

medical record contains physician treatment orders

4

7

1

Any POLST equivalent according to given definition

DC-2b: 3CP; retrospective evaluation of available sources, max. 3 months after potentially life-threatening events identified from NH charts; sources: NH records, interviews with resident/surrogate, family and reference nurse.

Domain

Subdomain(s)

Outcome

R (D)

R (O)

No.

item example(s)

Quality of Care Outcomes

care consistent with goal constructs/ Care received is consistent w. goals

care consistency with care preferences re. treatment decisions in the face of potentially life-threatening events in the last 3mths

1

1

9

1. Preference known? IF YES:2. Preferene well-informed (i.e., 4 SDM criteria fulfilled)? 3. Preference honored?

DC-2c: In case of deceased residents, interviews with bereaved family members and reference nurses

Domain

Subdomain(s)

Outcome

R (D)

R (O)

No.

item example(s)

Quality of Care Outcomes

care consistent with goal constructs/Care received is consistent with goals

Care consistency with care preferences

1

1

> 100 

Selected domains of ADBI (Teno et al. 2001): Inform and promote shared decision making (problem score #2), Encourage advance care planning (problem score #3) and Overall Rating Scale for patient focused, family centered care

satisfaction with care and communication

Surrogate's/family's ratings of quality of death and dying

1

15

Health Care Outcomes

depression

depression on the side of bereaved family member

1

31

22

IES-R (Maercker et al. 1998)

(psychological) trauma on the side of bereaved family members

(1)

(31)

14

HADS-d (Herrmann-Lingen et al. 2018)

Data Collection 3: Health care expenditures

Domain

Subdomain(s)

Outcome

R (D)

R (O)

No.

item example(s)

Health Care Outcomes

overall health care expenditures

6

25

 

complex calculation employing parameters from above, and separate assessments of time resources by skilled staff spent to promote the intervention

  1. Data Collection 4: Process evaluation see "Additional file 1"