Transcript 投影片 1 - 香港防癌會 The Hong Kong Anti

Towards a Patient-Family Care Model:
The Evaluation of a Cancer Family
Support Pilot Project
Ms. Candy FONG1
with Dr. Andy H.Y. HO1, Ms. Michelle,Y. J. Tam1,
Mrs. Patricia Y. P.Y. CHU2 and Ms. Tammy C. N.
LEE2
1The
University of Hong Kong
2The
Hong Kong Anti-Cancer Society
Background
○ In 2011, there were 26,998 new cases of cancer, representing
an increase in cancer incident rate by 9.6% compare with
2008 (Hong Kong Cancer Registry, 2014)
○ The mortality rates for both male and female had illustrated an
improving trend when compared with 1991 (Hong Kong Cancer
Registry, 2014)
○ Cancer care usually takes place in an out-patient setting, and
mainly by family caregivers in Hong Kong
○ Reciprocal suffering: Patients and families are “inextricably
interrelated as the suffering of one amplifies the distress of the
other” (Sherman,1998)
The Walking Hand-in-Hand Project
○ A 2-year pilot project of The Hong Kong Anti-Cancer Society
(HKACS), sponsored by the Jessie & Thomas Tam Charitable
Foundation
○ The Project was developed to fill a gap in meeting the need
of cancer patients and their families in facing the many crises
brought on by the onset and/or the recurrence of cancer
○ Objectives
 Distress reduction and quality of life
 Taking control in transition from normal living to being a cancer patient
 Getting organized as active partners with the multi-disciplinary team
Service of Cancer Family Support Project
Management Structure of the Project
The Evaluation
○ Objectives
 To assess whether the Project has been implemented
successfully in achieving all of its objectives
 To identify good practices and factors that facilitate or
hinder services delivery, and to make recommendations for
future development
The Evaluation
○ Quantitative Analysis
 Secondary data analysis on 673 cancer patients (N=473) and family
caregivers (N=200) at pre, post and 2-4 months follow up
 Data includes demographic information, assessments on physical and
psycho-social-spiritual distress, quality of life and service evaluation
 Data analysis: descriptive analysis, repeated-measures ANOVA and T-test
were used for data analysis
○ Qualitative Analysis
 Focus Group Interviews with 24 staff members and volunteers (N=9);
Patients (N=9); and family caregivers (N=6)
 Discussion on overall value of the project and its effectiveness, the most
and least effective components, and suggestions and recommendations
for improvements
 Data analysis: content analysis and thematic coding
Project Participation
Accumulative Number of Cancer Families
1000
748
800
600
455
400
200
836
276
93
0
Before NovDec 2011
Jan-June 2012 July-Dec 2012 Jan-June 2013 July-Sept 2013
(6 months)
(6 months)
(6 months)
(3 months)
○ 62% of patients and 65% of caregivers completed assessments on all
three time points
○ Average length of services for patients is 243 days and for caregivers
is 239 days
Characteristics of Patients (N=473)
Age
18-29
30-39
40-49
50-59
60-69
70-79
80 and above
Marital Status
Married
Not Married
Divorced/ Separated
Widow
Living Condition
Living with Family
Living with Spouse Only
Living Alone
Living with Friends
Living with Unrelated People
Number
6
20
98
134
118
64
27
337
57
40
35
317
91
55
3
2
%
1.3
4.3
21.0
28.7
25.3
13.7
5.8
Gender
Female
Male
Number
278
195
%
58.8
41.2
71.9
12.2
8.5
7.5
District
New Territories
Kowloon
Hong Kong Island
Mainland China
Others
219
154
96
12
2
43.7
32.8
20.5
2.6
0.4
67.7
19.4
11.8
0.6
0.4
No. of Children
No Children
One Child
Two Children
Three Children
Four Children
Five or Above
96
106
146
64
26
17
21.1
23.3
32.1
14.1
5.7
3.7
Characteristics of Patients (N=473)
Cancer Type
Number
%
Cancer Stage
Number
%
Lung
114
24.4
Stage 0
3
0.7
Breast
101
21.6
Stage 1
32
7.1
Colorectal
77
16.5
Stage 2
58
12.8
NPC
29
6.2
Stage 3
67
14.8
Cervix
21
4.5
Stage 4
127
28.0
Prostate
20
4.3
Don’t Know
166
36.6
Stomach
17
3.6
Liver
16
3.4
Ovary
14
3.0
Bladder
9
2.8
Others
46
10.4
Less than 1 year
197
44.4
Years since Diagnosis
Treatment Progress
Treatment in Progress
276
58.6
1-2 years
173.0
38.9
Treatment Completed
98
20.8
3-5 years
48.0
10.8
Waiting for Treatment
89
18.9
6-9 years
15.0
3.4
Don’t Know
8
1.7
10 years and above
11.0
2.5
Physical Well Being (N=473)
Physical Problems Reported
45%
40%
35%
30%
25%
20%
15%
10%
5%
0%
Distress Thermometers (0-10)
10
8
T1 (N=473)
T1 (N=294)
T2 (N=294)
T3 (N=294)
6
4
2
4.48**
4.43
4.93
3.71**
3.34**
Physical Pain
Sleep Problems
3.13**
0
T1
T1
T2
T3
(N=456) (N=289) (N=289) (N=289)
Fatigue Appetite Mobility Breathing Urination
Overall Health (1-5)
Physical Well Being (4-20)
13.5
5
12.91**
13
4
12.5
2.88**
3
2
6.09
6.25
2.07
2.17
Overall
Health
12
11.83
11.48
Physical
Well Being
11.5
11
1
T1 (N=444)
T1 (N=286)
T2 (N=286)
10.5
T1 (N=444)
T1 (N=287)
T2 (N=287)
Psychological Well Being (N=473)
Emotional Problems Reported
80%
60%
T1 (N=473)
40%
T1 (N=294)
20%
T2 (N=294)
0%
Worries
Nervous
Depress
Anxiety
Emotional Distress (0-10)
6
4
Difficulties in
planning for
future
13.14**
13.5
6.39
T3 (N=294)
Psychological Well Being (4-20)
10
8
Sadness
13
6.28
12.5
4.04**
3.05**
2
Emotional
Distress
12
11.44
11.65
Psychological
Well Being
11.5
11
0
T1 (N=456)T1 (N=289)T2 (N=289)T3 (N=289)
10.5
T1 (N=444)
T1 (N=287)
T2 (N=287)
Social Well Being (N=473)
Social and Pragmatic Problems Reported
45%
40%
35%
30%
25%
20%
15%
10%
5%
0%
Distress Thermometers (0-10)
10
8
T1 (N=473)
T1 (N=294)
T2 (N=294)
T3 (N=294)
Finance
6
5.11
4
2
4.15
13.61**
8
13.52**
12.5
12
12.27
12.56
12.41
11.5
T1 (440/444) T1 (286/287) T2 (286/287)
Pragmatic Issues
Family Issues
4.07
3.12**
2.59**
Cancer and Death Related
(0-10, Proxy by Workers/ Nurses)
10
13.5
12.36
3.17**
T1
T1
T2
T3
(N=456) (N=289) (N=289) (N=289)
Social and Environmental Well Being (4-20)
13
4.00**
0
With Childcare Work/
With
Children
Education Spouse/
Partner
14
5.09
6.75
6.73
7.17**
6.22**
Death Taboo
6
Social Well
Being
4
Environment
2
5.58**
3.97
3.96
4.83**
0
T1
T1 (N=288/ T2 (N=288/ T3 (N=288/
(N=458/460)
290)
290)
290)
Cancer
Understanding
Overall Quality of Life (N=473)
General Distress (0-10)
7.5
6.78
6.74
6.55
6.47
6.5
5.5
General Distress
(Subjective Report)
4.35**
4.5
4.34**
3.5
2.5
T1 (N=456)
T1 (N=288)
3.20**
T3 (N=288)
T2 (N=288)
General Condition (0-10, Proxy Report)
10
Qverall Quality of Life (1-5)
5
8
6
General Distress
(Proxy Report)
3.24**
6.08**
4.25
6.82**
4
4.31
General
Condition
4
3
3.23**
2.58
2.69
T1 (N=444)
T1 (N=287)
Qverall
Quality of
Life
2
2
0
T1 (N=460) T1 (N=290) T2 (N=290) T3 (N=290)
1
T2 (N=287)
Characteristics of Caregivers (N=200)
Age
20-29
30-39
40-49
50-59
60-69
70-79
80 and above
Kinship with Patient
Spouse/ Partner
Children
Siblings
Parents
Relatives
No. of Children
No Children
One Child
Two Children
Three Children
Four Children
Five and Above
Number
7
33
52
51
36
11
1
%
3.7
17.3
27.2
26.7
18.8
5.8
0.5
105
61
17
10
7
52.5
30.5
8.5
5.0
3.5
60
46
54
16
7
3
32.3
24.7
29.0
8.6
3.8
1.6
Gender
Female
Male
Number
146
54
%
73
27
Marital Status
Married
Not Married
Divorced
148
44
4
75.5
22.4
2.0
109
49
33
5
2
55.1
24.7
16.7
2.5
1.0
90
70
35
1
2
45.5
35.4
17.7
0.5
1.0
Living Condition
Living with Patient
Living with Family
Living with Patient and Family
Living Alone
Living with Spouse Only
District
New Territories
Kowloon
Hong Kong Island
Mainland
Others
Physical Well Being (N=200)
Overall Health (1-5)
5
4
3.19
3.11
3.37**
3
Overall Health
2
1
T1 (N=192)
T1 (N=131)
T2 (N=131)
Physical Well Being (4-20)
13.90**
14
13.5
13
12.89
12.79
Physical Well Being
12.5
12
T1 (N=192)
T1 (N=130)
T2 (N=130)
Psychological Well Being (N=200)
Psychological Well Being (4-20)
14
13.50**
13.5
13
Psychological
Well Being
12.5
12.29
12.18
12
11.5
T1 (N=192)
T1 (N=131)
T2 (N=131)
Social Well Being (N=200)
Social and Environmental Well Being (4-20)
14
13.63**
13.5
13
12.5
12.81
13.48**
12.7
Social Well Being
Environment
12.76
12.67
12
T1 (N=192)
T1 (N=131)
T2 (N=131)
Cancer and Death Related (0-10, Proxy by Workers/ Nurses)
10
8
6.83
7.05
5.91**
6
Death Taboo
5.54**
4
2
6.82**
3.71
3.53
T1 (N=197)
T1 (N=127)
4.72**
0
T2 (N=127)
T3 (N=127)
Cancer
Understanding
Overall Quality of Life (N=200)
General Distress (0-10, Proxy Report)
10
General Condition (0-10, Proxy Report)
10
6.98
8
7.06
6
8
4.49**
4
General
Distress
3.65**
6
4.07
6.53**
General
Condition
3.89
4
2
2
0
0
T1 (N=197) T1 (N=127) T2 (N=127) T3 (N=127)
T1 (N=197) T1 (N=127) T2 (N=127) T3 (N=127)
Overall Quality of Life (1-5)
5
4
3
5.90**
2.82
2.81
T1 (N=191)
T1 (N=129)
3.26**
Overall Quality
of Life
2
1
T2 (N=129)
Significant Improvements among Patients
Physical Condition
Psychological Well Being
• 61.9% reported less distress by body
pain
• 91.1% reported less distress by
emotional disturbance
• 82.5% reported less distress by sleep
problems
• 69% reported improve psychological
well being
• 58.5% reported improved health
• 60.3% reported improved
physical condition
Patients
Improvements
Social/ Environment
• 78.7% reported less distress by
pragmatic issues
• 75.9% reported less distress by family issues
• 47.6% reported improved social well being
• 66.9% reported improved environmental well
being
• 90.3% reported improved cancer
understandings
• 80.9% reported reduced death taboos
Quality of Life
• Over 90% reported less overall
distress
• 86.2% reported improved general
condition
• 86.2% reported improved QoL
Significant Improvements among Caregivers
Physical Condition
Psychological Well Being
• 54.6% reported improved health
• 67.7% reported improved
• 71% reported improve psychological
well being
physical condition
Caregivers
Improvements
Social/ Environment
• 45.6% reported improved
social well being
• 66.4% reported improved
environmental well being
• 94.5% reported improved cancer
understandings
• 88.2% reported reduced death
taboos
Quality of Life
• 89% reported less overall distress
• 89.8% reported improved general
condition
• 41.1% reported improved QoL
Summary from Qualitative Evaluation
Themes
Subthemes
Uniqueness Values of the
project









Major Challenges





Suggestions for Improvement 





Factors Contributing to the
Success of the Project
Casework Approach
Timely Support through Active Community Outreach
Whole Person Care
Complementary Role to Conventional Care and Support:
Individualized, Tailor-made Services, Continuous
Informational and Emotional Support
Whole Hearted Devotion to Project
Mutual Influencing Process
Sense of Companionship
Sense of Understanding
Flexibility and Openness
Complexity in Psycho-Spiritual Support
Sense of Helplessness
Emotional Triggers
Challenges in Talking about Life and Death
Difficulties in Promoting the Project
Support and Training for Staff and Volunteers
More Collaboration and Communication with Hospitals
Community Outreach Services
Need for More Gatherings
Geographical Location and Facilities
Resources and Man Power
Conclusion
○ The pilot project effectively attained its objective to reduce
cancer families’ distress in face of cancer, enhanced their
quality of life, and facilitate control in transition of cancer
phrases
○ The project is invaluable complementary to
conventional care
 Individualized, tailor-made services
 Continuous timely support through active community outreach
○ Serving a special, vulnerable group of cancer families:
 Tended to be at late middle age or old age, married couples, and
were living with family
 More deprived: Lower education level and living in public housing
The Way Forward…
○ Increase in cancer survival rate and an aging trend in cancer
population imply an increase in cancer care burden
○ Limited healthcare resources are far from sufficient to provide
holistic care to patients, let alone family caregivers
○ Most patients will be cared within the community, by family
caregivers
○ There is an imperative needs to strengthen collaborations with
community organizations, by investing resources to further
develop and support multidisciplinary, community-outreach,
person-centered cancer family support projects
Acknowledgement
○ All cancer patients and their family caregivers participated in
this study
○ The Hong Kong Anti-Cancer Society
○ Professor Cecilia Chan for her continuous advice and support
throughout the study
Reference
Hong Kong Cancer Registry. (2014). Top ten cancers in 2011.
Retrieved from
http://www3.ha.org.hk/cancereg/statistics.html
Sherman, D. W. (1998). Reciprocal suffering: the need to improve
family caregivers' quality of life through palliative care. Journal of
palliative medicine, 1(4), 357-366.
Thank You!
Ms. Candy FONG
Email: [email protected]