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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]