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

○ 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

Before Nov-Dec 2011

Jan-June 2012 (6 months)

July-Dec 2012 (6 months)

Jan-June 2013 (6 months)

July-Sept 2013

(3 months)

0

200

400

600

800

1000

93276

455

748836

Accumulative Number of Cancer Families

Characteristics of Patients (N=473)Age Number % Gender Number %18-29 6 1.3 Female 278 58.830-39 20 4.3 Male 195 41.240-49 98 21.050-59 134 28.760-69 118 25.370-79 64 13.780 and above 27 5.8

Marital Status DistrictMarried 337 71.9 New Territories 219 43.7Not Married 57 12.2 Kowloon 154 32.8Divorced/ Separated 40 8.5 Hong Kong Island 96 20.5Widow 35 7.5 Mainland China 12 2.6

Others 2 0.4

Living Condition No. of ChildrenLiving with Family 317 67.7 No Children 96 21.1Living with Spouse Only 91 19.4 One Child 106 23.3Living Alone 55 11.8 Two Children 146 32.1Living with Friends 3 0.6 Three Children 64 14.1Living with Unrelated People 2 0.4 Four Children

Five or Above2617

5.73.7

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

Years since Diagnosis

Treatment Progress Less than 1 year 197 44.4

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)

T1 (N

=456)

T1 (N

=289)

T2 (N

=289)

T3 (N

=289)

0

2

4

6

8

10

4.93 4.433.71** 3.13**

6.25 6.09

4.48**3.34**

Distress Thermometers (0-10)

Physical Pain

Sleep Problems

T1 (N=444) T1 (N=286) T2 (N=286)1

2

3

4

5

2.072.17

2.88**

Overall Health (1-5)

Overall Health

T1 (N=444) T1 (N=287) T2 (N=287)10.5

11

11.5

12

12.5

13

13.5

11.4811.83

12.91**

Physical Well Being (4-20)

Physical Well Be-ing

Fatig

ue

Appetite

Mob

ility

Breat

hing

Urinat

ion

0%

10%

20%

30%

40%

Physical Problems Reported

T1 (N=473)

T1 (N=294)

T2 (N=294)

T3 (N=294)

Psychological Well Being (N=473)

0%

40%

80%Emotional Problems Reported

T1 (N=473)T1 (N=294)T2 (N=294)T3 (N=294)

T1 (N=444)

T1 (N=287)

T2 (N=287)

10.5

11

11.5

12

12.5

13

13.5

11.4411.65

13.14**

Psychological Well Being (4-20)

Psycholog-ical Well Being

T1 (N=456)

T1 (N=289)

T2 (N=289)

T3 (N=289)

0

2

4

6

8

10

6.39 6.28

4.04**

3.05**

Emotional Distress (0-10)

Emotional Distress

Social Well Being (N=473)

T1 (N

=456)

T1 (N

=289)

T2 (N

=289)

T3 (N

=289)

0

2

4

6

8

10

5.11 5.09 4.00**

3.17**

4.15 4.073.12** 2.59**

Distress Thermometers (0-10)

Pragmatic Issues

Family Issues

Fina

nce

With

Chi

ldre

n

Child

care

Wor

k/ E

duca

tion

With

Spo

use/

Par

tner

0%

15%

30%

45%

Social and Pragmatic Problems Reported

T1 (N=473)T1 (N=294)T2 (N=294)T3 (N=294)

T1 (440/444)

T1 (286/287)

T2 (286/287)

11.5

12

12.5

13

13.5

14

12.3612.56

13.61**

12.2712.41

13.52**

Social and Environmental Well Being (4-20)

Social Well BeingEnvi-ron-ment

T1 (N=458/4

60)

T1 (N=288/

290)

T2 (N=288/

290)

T3 (N=288/

290)

0

2

4

6

8

10

6.75 6.73

5.58**4.83**

3.97 3.96

6.22**7.17**

Cancer and Death Related (0-10, Proxy by Workers/ Nurses)

Death Taboo

Cancer Un-derstanding

Overall Quality of Life (N=473)

T1 (N=456) T1 (N=288) T2 (N=288) T3 (N=288)2.5

3.5

4.5

5.5

6.5

7.5

6.55 6.47

4.34**

3.20**

6.78 6.74

4.35**

3.24**

General Distress (0-10)

General Distress (Subjective Re-port)

T1 (N=460)

T1 (N=290)

T2 (N=290)

T3 (N=290)

0

2

4

6

8

10

4.25 4.31

6.08**6.82**

General Condition (0-10, Proxy Report)

General Condition

T1 (N=444) T1 (N=287) T2 (N=287)1

2

3

4

5

2.58 2.69

3.23**

Qverall Quality of Life (1-5)

Qverall Quality of Life

Characteristics of Caregivers (N=200)Age Number % Gender Number %20-29 7 3.7 Female 146 7330-39 33 17.3 Male 54 2740-49 52 27.250-59 51 26.7 Marital Status60-69 36 18.8 Married 148 75.570-79 11 5.8 Not Married 44 22.480 and above 1 0.5 Divorced 4 2.0

Kinship with Patient Living ConditionSpouse/ Partner 105 52.5 Living with Patient 109 55.1Children 61 30.5 Living with Family 49 24.7Siblings 17 8.5 Living with Patient and Family 33 16.7Parents 10 5.0 Living Alone 5 2.5Relatives 7 3.5 Living with Spouse Only 2 1.0No. of Children DistrictNo Children 60 32.3 New Territories 90 45.5 One Child 46 24.7 Kowloon 70 35.4 Two Children 54 29.0 Hong Kong Island 35 17.7 Three Children 16 8.6 Mainland 1 0.5 Four Children 7 3.8 Others 2 1.0 Five and Above 3 1.6

Physical Well Being (N=200)

T1 (N=192) T1 (N=131) T2 (N=131)1

2

3

4

5

3.19 3.11 3.37**

Overall Health (1-5)

Overall Health

T1 (N=192) T1 (N=130) T2 (N=130)12

12.5

13

13.5

14

12.89 12.79

13.90**Physical Well Being (4-20)

Physical Well Being

Psychological Well Being (N=200)

T1 (N=192) T1 (N=131) T2 (N=131)11.5

12

12.5

13

13.5

14

12.29 12.18

13.50**

Psychological Well Being (4-20)

Psychological Well Being

Social Well Being (N=200)

T1 (N=192) T1 (N=131) T2 (N=131)12

12.5

13

13.5

14

12.81 12.7

13.63**

12.76 12.67

13.48**

Social and Environmental Well Being (4-20)

Social Well BeingEnvironment

T1 (N=197) T1 (N=127) T2 (N=127) T3 (N=127)0

2

4

6

8

10

6.83 7.05

5.54**4.72**

3.71 3.53

5.91**6.82**

Cancer and Death Related (0-10, Proxy by Workers/ Nurses)

Death Taboo

Cancer Un-derstanding

Overall Quality of Life (N=200)

T1 (N=197)

T1 (N=127)

T2 (N=127)

T3 (N=127)

0

2

4

6

8

10

6.98 7.06

4.49**3.65**

General Distress (0-10, Proxy Report)

General Distress

T1 (N=197)

T1 (N=127)

T2 (N=127)

T3 (N=127)

0

2

4

6

8

10

4.07 3.89

5.90**6.53**

General Condition (0-10, Proxy Report)

General Condi-tion

T1 (N=191) T1 (N=129) T2 (N=129)1

2

3

4

5

2.82 2.813.26**

Overall Quality of Life (1-5)

Overall Qual-ity of Life

Significant Improvements among Patients

Physical Condition Psychological Well Being

Social/ Environment Quality of Life

PatientsImprovement

s

• 91.1% reported less distress by emotional disturbance

• 69% reported improve psychological well being

• Over 90% reported less overall distress

• 86.2% reported improved general condition

• 86.2% reported improved QoL

• 61.9% reported less distress by body pain

• 82.5% reported less distress by sleep problems

• 58.5% reported improved health

• 60.3% reported improved

physical condition

• 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

Significant Improvements among Caregivers

Physical Condition Psychological Well Being

Social/ Environment Quality of Life

CaregiversImprovement

s

• 71% reported improve psychological well being

• 89% reported less overall distress

• 89.8% reported improved general condition

• 41.1% reported improved QoL

• 54.6% reported improved health

• 67.7% reported improved

physical condition

• 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

Summary from Qualitative EvaluationThemes SubthemesUniqueness Values 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

Factors Contributing to the Success of the Project

Whole Hearted Devotion to Project Mutual Influencing Process Sense of Companionship Sense of Understanding Flexibility and Openness

Major Challenges Complexity in Psycho-Spiritual Support Sense of Helplessness Emotional Triggers Challenges in Talking about Life and Death Difficulties in Promoting the Project

Suggestions for Improvement 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

ReferenceHong 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 FONGEmail: hiocheng@hku.hk