Table 2 Comparison of trial eligibility criteria and rates and cause of attrition

Ahronheim [35] (2000)

M: Hospitalization for acute illness

D, F: FAST 6d or greater (Dementia)

3

Not stated

99/99 (0%)

NA

Sample was small. (Patients should be identified prior to the acute hospitalization)

Aiken [48] (2006)

D: NYHA IIIB – IV (HF), Oxygen saturations, pO2, oxygen requirements (COPD)

P: Expert judgment based on available prognostic data

S: Fatigue, palpitation, dyspnoea, or angina due with any activity

M: Recent exacerbation (treatment in a hospital within the 3-month prior to enrolment)

4

Post-hoc calculation

112/192 at 3-month (42%),

92/192 at 6-month (52%)

Medical causes (death, hospice, skilled nursing facilities)

The prognostication criteria were limited. One third of all participants died or transferred to hospice in the first 3 months

Bajwah [49] (2015)

D: High resolution CT or composite physiologic index scores (ILD)

1

Phase2: 52

35/53

(34%)

Died (7/18), no return of questionnaire but contactable (7/18)

The criteria for excluded patients were not recorded which may have provided valuable information

Bekelman [36] (2018)

S: At least one symptom (fatigue, shortness of breath, pain, depression)

F, Q: KCCQ, M: Diuretic dosing, LVEF, BNP, NT-pro BNP

4

312

248/317

(22%)

Deceased (8/69)

Withdraw (8/69)

The missing patient-reported data is similar to other studies of seriously ill populations

Bassi [37] (2021)

D: ILD defined by a HRCT (with traction bronchiectasis and/or honeycombing)

P: evidence of advanced disease: GAP index at least 3, PaO2 ≤ 60 mmHg at room air, a decline in FVC ≥ 10% in the previous 6 months

2

50

33/50

(34%)

Death (14/17) Refused to continue (3/17)

Enrolled patients were in a late phase of the disease, where palliative interventions may have limited opportunity for effectiveness

Brännström [50] (2014)

D: NYHA III − IV (CHF) and at least one of the following:

P: < 1 year (no criteria), S: Cardiac cachexia—weight loss, Q: QOL (VAS)

M: Hospitalization of worsening HF that resolved with the IV, continual IV support

5

72

60/72

(17%)

Died (12/12)

Patients with a high number of severe co-morbidities lead small sample

Brumley [51] (2007)

D: CHF, COPD, cancer. (severity was assessed by PPS), P: Surprise Question

F: PPS, M: Visited ED or hospital at least once within the previous year of enrolment

4

300

297/310

(4%)

Died before intervention (8/13), Withdraw (5/13)

Not stated the eligibility criteria

Eggers [52] (2018)

D: Parkinson’s disease (no criteria)

1

150

107/150

(29%)

Withdraw (18/43),

loss of contact (15/43)

Exclusion criteria (dementia or severe depression) are a serious limitation for the inclusion of late-stage PD

Evans [53] (2021)

D: Non-malignant chronic conditions, F: Clinical Frailty Scale sore of ≥ 4

S, F: ≥ 2 symptoms or concerns, including end-of-life issues, progressive illness/frailty, and/or complex needs

M: Increasing health service use

4

5

47/50

(6%)

Deceased (1/3) New cancer diagnosis (1/3) Patient unwell (1/3)

Not stated a limitation of the eligibility criteria

Farquhar [54] (2009)

D: COPD/COAD (no criteria)

S: Breathlessness in spite of optimisation of underlying illness

O: Patients who might benefit from a self-management programme

3

Phase 2: Maximum of 28

13/14

(7%)

Died

(1/1)

Not stated the eligibility criteria

Farquhar [55] (2016)

D: Non-malignant (no criteria)

S, O: Same as the phase 2 trial

3

60

72/87

(17%)

Died (2/15)

Not stated the eligibility criteria

Gade [38] (2008)

D: Life-limiting diagnosis (no criteria)

P: Surprise Question

2

550

512/517

(1%)

Withdrew prior to the intervention

Not stated the eligibility criteria

Gao [56] (2020)

D: MS (EDSS score ≥ 7.5), all stages of MND, IPD (Hoehn and Yahr stages 4–5), progressive supranuclear palsy (Hoehn and Yahr stages 3–5) and multiple system atrophy (Hoehn and Yahr stages 3–5)

S: An unresolved symptom; cognitive problems or complex psychological issues; communication or information problems or complex social need

2

35

327/350

(7%)

Died (8/23) Withdraw (15/23)

Sample was largely composed of patients with MS and IPD who tend to have a longer disease course

Hanson [39] (2019)

D: Dementia stage 5 to 7 on the GDS

M: Acute illness hospitalization

2

120

57/62

(8%)

Lost to follow up (4/5) Withdraw (1/5)

Many persons could not be enrolled due to short hospital stays and caregiver stresses

Helgeson [40] (2022)

D: End-stage organ disease, P: Age ≥ 80 years, APACHE II ≥ 14, SOFA ≥ 9;

F: Pre-existing functional dependency (admitted from an acute living facility, skilled nursing facility, or long-term acute care facility), late-stage dementia (bed-bound, nonverbal, incontinent, or unable to self-nourish), O: MICU perceived need

M: Consideration to place a permanent feeding tube or tracheostomy; recurrent ICU admissions in the past year; post-cardiac arrest

5

300

91/91

(0%)

NA

The criteria have a potential source of bias that the sicker patients would screen positive

Higginson [57] (2014)

D: Cancer, COPD, CHF, ILD, MND (no criteria)

S: Refractory breathlessness (MRC scale)

O: Willing to engage with BSS

3

110

82/105

(22%)

Died (4/23), withdrew (5/23), illness (8/23), unable to contact

Eligibility criteria prevented extrapolation of study results to patients in the last month of life

Janssen [58] (2019)

D: COPD in GOLD (FEV1/FVC < 70%) stage III or IV (FEV1 < 50% predicted) M: Long-term oxygen therapy and/or home mechanical ventilation and/or one or more hospital admissions in the previous year for an acute exacerbation

2

180

41/51

(20%)

Died (9/10) Declined (1/10)

Did not reach the target number of cases because of cognitive impairment, comorbidities, or end-of-life

Janssen [41] (2020)

D: IPF as diagnosed by chest CT or lung biopsy, and documented by a pulmonologist in the patient's medical record

1

Not stated

18/22

(18%)

Lung transplant (1/4) Died (1/4), Lost to follow-up (1/4) Hospice (1/4)

Logistical issues such as lack of interest in extra visits. Some patients felt the intervention was unnecessary at their stage in the disease

Kluger [42] (2020)

D: Diagnosis of probable PD or another PDRD (multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, or Lewy body dementia),

S, F: Moderate to high PC needs based on the PC-NAT modified for PD

3

300

182/210

(13%)

Death (7/28) Withdraw (19/28) Contact to lost (1/28)

The study had broad inclusion criteria, but more focused recruitment could improve certain outcomes

O'Donnell [43] (2018)

D: NYHA II-IV (HF)

M: Hospitalization with high-risk features

2

Not stated

31/50

(38%)

Died (19/19)

Small sample size

O'Riordan [44] (2019)

D: HF as primary diagnosis (NYHA Class II-IV)

M: symptomatic/active HF in current hospitalization or within prior six months

2

84

30/39

(23%)

Dropped out (5/10),

Not eligible (3/10) Died (2/10)

Many patients improved significantly by discharge and may not have needed an intensive, six-month palliative care intervention

Rogers [45] (2017)

D: HF with at least 1 sign of volume overload, P: ESCAPE risk score

S: Dyspnoea at rest or minimal exertion, M: Hospitalization for acute HF

4

200

 → 150

84/150

(44%)

Died (43/66)

High mortality and loss of follow-up reflect the difficulty of retaining seriously ill patients

Scheerens [59] (2020)

D: GOLD III and ≥ 2 or GOLD IV (COPD) and one or more of the following criteria:

S: MRC Scale Dyspnea 4, NYHA III, BMI ≤ 18, S, F: CAT scale ≥ 25

M: Oxygen dependent, three or more hospitalizations for COPD in the past three years, intubation/noninvasive ventilation in the past year

4

40

25/ 39

(36%)

Died (6/14) Refused (6/14) Ended period (1/14) Too ill (1/4)

Although some GPs criticized the intervention being given too early, the criteria may be appropriate given the emphasis on early palliative care

Schunk [46] (2021)

D: Advanced life-limiting and progressive disease

S: Breathlessness on exertion or at rest despite treatment of the underlying condition

F: Capable to participate physiotherapy and self-management programs

3

160

143/183

(22%)

Withdrawal (23/40) Death (10/40) Medical reason (6/40) Lost to f/u (1/40)

Higher proportion of lost to follow-up were possibly caused by the burden relating to participating in the multi-component intervention

Sidebottom [47] (2015)

D: Acute HF (reports from the electronic record)

1

500

143/232

(38%)

Not completed survey, reason unknown (68/89), Died (19/89)

Losses to follow-up

Ng [60] (2018)

D, P, S: Same as Wong et al. [61] M: Repeated hospitalization (> two in last six months)

4

78

45/84

(46%)

Death, too ill, refusal (29/39)

Small sample due to the subjects being too weak or cognitively impaired

Wong [61] (2016)

Two of the following identified as ESHF by the Prognostic Indicator Guidance

D: NYHA III-IV (HF) P: Surprise Question, S: Existence of physical/psychological symptoms despite optimal tolerated therapy

M: Repeated hospital admissions with symptoms of HF (three within 1 year)

4

Not stated

68/84

(19%)

Discontinued interven

tion (e.g., die) (14/16)

The loss of follow-up was high due to mainly death and deterioration