A total number of 292 patients were recruited (PG 227 patients; TG 65 patients) consecutively to the IBSP between March 2014 and October 2018. The details of the case allocation are shown in Figure 6.
For the Proactive Group (PG) - lung cancer patients (high risk of developing chronic breathless syndrome):
After exclusion of eighteen patients who were triaged directly to the TG, there were 209 patients in total in the PG. The mean age was 72.6 years old (range 38 to 95 years old). 131 of them were male (58%). The majority of the patients had palliative performance score >/= 60 at recruitment. The participation of care-givers is central to the program: the mean number of relatives participated per family was 1.17.
- Patients’ baseline characteristics
The baseline self-rating physical, emotional stress and confidence scores of these 209 PG participants are summarized on table 3.
Table 3: Patient’s baseline characteristic of the PG, on a scale of 0-10, with 0 is no at all and 10 is the worst
Self-rating scores (0-10)
|
0-0.5
|
1-2
|
3-4
|
5-6
|
7-8
|
9-10
|
BORG dyspnea at rest (%)
|
65
|
29
|
5
|
0
|
1
|
0
|
BORG dyspnea during activities (%)
|
27
|
38
|
27
|
5
|
2
|
1
|
Emotion disturbance (%)
|
53
|
16
|
14
|
8
|
7
|
0.6
|
Unconfident feelings (%)
|
36
|
19
|
21
|
17
|
4
|
3
|
Forty-one patients are too old to comprehend the BORG rating system and were not included. Among the rest, 158 (94%) and 108 (65%) patients experienced less than slight (>/=2) breathlessness symptom at rest and during activity. 25 (16%) out of 156 assessable patients and 36 (24%) out of 154 patients had significant emotional stress score and unconfident score (score of more than 5 on a scale of 0-10) respectively.
(II) Outcome of the cohorts
Among the cohort of PG, 135 patients (64.6%) had breathlessness symptom throughout their disease course since the recruitment, 27 patients (12.9%) developed breathlessness in the later part of their disease journey and 47 patients (22.4%) did not present with any breathlessness symptom all along (Fig 7). Since the objective of this program was to study the efficacy of proactive education and training to handle the breathlessness symptom, those patients did not experience any breathlessness was excluded from analysis. In addition, a total of 17 patients with rapidly deteriorating symptom control were subsequently referred to the TG for more intensive non-pharmacological interventions. However, only six patients attended the intervention service and the rest died shortly while waiting for the monthly therapeutic intervention session.
- Primary endpoint measurements
- Use of pharmacological interventions in their disease course
A total of 162 patients in the PG were symptomatic i.e. either presented with dyspnea throughout or developed dyspnea later in their disease course. 77 patients (48%) required regular pharmacological interventions (Table 4). At least half of the patients could use non-pharmacological interventions alone to control their symptom.
Table 4
Pharmacological interventions
|
Incidence
|
Morphine
|
58%
|
Bronchodilator
|
49.3%
|
Home Oxygen therapy
|
24%
|
Benzodiazepine
|
35%
|
- Survival rate
The median survival for the symptomatic proactive group is 21 weeks (range 0.14 to 169) and their 1-year survival is 22%. At the time of analysis, 149 patients (92%) already died of disease and one patient lost to follow up. Twelve patients were still actively followed up in the program at the time of analysis.
- Predominant place of care in last six months of life for the symptomatic proactive group
In this cohort, 124 patients (76.5%) remained in community-based care and only 25 patients (16.7%) needed institution-based care in their last six months of life.
- Frequency of unplanned hospital admission and Accident and Emergency attendance
Based on the patients’ electronic records in Hong Kong’s public healthcare system, the patients’ frequencies of emergency department attendances and unplanned hospital admissions after enrolling into the program were recorded (Fig 8). This study demonstrated that the majority of admissions were through emergency department rather than hospice clinic (76% vs 24%). About half of the patients (48%) on the PG attended emergency department and admitted to hospital only once in their disease course and usually at their terminal phase. The majority of proactive group patients (89%) attended emergency department fewer than 2 times during their disease journey after receiving interventions from our proactive breathlessness day program. 19 % of the patients did not need emergency medical care at all. Overall, the mean unplanned admission and emergency department attendance per patient are 1.1 and 1.44, respectively.
For the Therapeutic group- patients with active significant breathlessness:
A total of 65 patients were recruited consecutively into the TG. The mean age was 72.45 years old (range 51 to 93 years old). 39 of them were male (60%). Most patients had lung cancer (70%) followed by colon cancer (8%) and breast cancer (5%) and others (17%). The majority of the patients had a palliative performance score >/= 60 at recruitment.
- Patient’s baseline characteristics and duration of services
A significant number of the patients (85%) had moderate to high level exertion breathless score at presentation (BORG dyspnea score >/=3 during activity). This greatly affected their quality of life as shown by their high incidence of significant emotion stress (34%) and unconfident feeling (50%) i.e. severity score of more than 5 on a scale of 0-10. (Table 5)
Self-rating scores (0-10)
|
0-0.5
|
1-2
|
3-4
|
5-6
|
7-8
|
9-10
|
BORG dyspnea at rest (%)
|
31
|
51
|
16
|
0
|
2
|
0
|
BORG dyspnea during activities (%)
|
2
|
13
|
58
|
19
|
6
|
2
|
Emotion disturbance (%)
|
43
|
10
|
14
|
23
|
10
|
0
|
Unconfident feelings (%)
|
23
|
11
|
17
|
36
|
11
|
2
|
Table 5: Patient’s baseline characteristics of the Therapeutic group, on a scale of 0-10, with 0 is no at all and 10 is the worst
The majority of the patients had only received a short period of service (78% patients had 3 or fewer monthly attendances) due to their rapid clinical deterioration which ended up with hospitalization and/or death (Fig 9).
- Effectiveness of the Therapeutic Interventions
All patients required regular intensive pharmacological interventions and non-pharmacological interventions to control their symptom. The results of 46 patients were analyzed for their maximum absolute changes in BORG, emotional stress and unconfident scores. The other nineteen patients were excluded from analysis since they were not available for further assessment in our monthly program after the first attendance. The reasons are namely death shortly after joining the program (37%), hospitalization (37%), referring out for other symptoms control e.g. pain (5%), refusal to attend (5 %) and others (16%).
The results suggest that the therapeutic intervention program is effective in improving breathless patient’s physical status. Twenty patients (44%) and 22 patients (48%) experienced improvement of dyspnea symptom at rest and during activity, respectively. The median score of changes were 2 (range 0.5 to 5 out of 10) at rest and 1.5 (range 1-5 out of 10) during activity. Furthermore, twelve patients (26%) reported stable dyspnea during activity throughout their disease course despite their disease progressing.
For the psychological status, more patients experienced improvement or stable in their emotional stress score (17% / 46%) and unconfident score (24% / 28%). The median score of improvement for emotional stress score and unconfident score were 3.5 (range 2-6) and 4 (range 1 to 7), respectively (Fig 10).
Emotion stress and confidence scores (46 patients)
The absolute change is measured from the maximum improvement
or deterioration of score during their whole disease journey
|
No change
|
Improve
|
Deteriorate
|
Cannot comprehend the test
|
Emotional Stress core
|
46%
|
17%
*3.5(range 2-6)
|
15%
*3.5 (range 1-7)
|
22%
|
Confidence scores
|
28%
|
24%
*4 (range 1-7)
|
26%
*3 (range 1-6)
|
22%
|
* Median score of change
For the outcomes of the patients in the TG, only fifteen patients (22%) could be discharged from the program due to stable or improved condition. A significant number of patients dropped out from the program due to deterioration resulting in hospitalization (32%) or death (28%). The details are summarized in Fig 11.