Dr Sylvie Lambert, RN, PhD

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1 Is it the most frequent unmet supportive care needs that predict caregivers anxiety and depression? Results from Australia s Partners and Caregivers Longitudinal Well-being Study Dr Sylvie Lambert, RN, PhD Assistant Professor, Ingram School of Nursing, McGill University, Montreal Research Associate, St. Mary s Research Centre, Montreal Fonds de Recherche du Québec-Santé (FRQS) Research Scholar Junior 1

Impact of cancer on caregivers Historically, informal caregivers have always played a major role in providing cancer care Worldwide, as the burden of cancer care is no longer manageable through

2 Impact of cancer on caregivers Historically, informal caregivers have always played a major role in providing cancer care Worldwide, as the burden of cancer care is no longer manageable through formal care settings alone, there is a gradual shift towards community-based care In this context, caregivers are an essential extension of the formal health care system and provide 70%-80% of patients care Economic value of this support estimated in the billions Caregivers involvement not only reduces the demands on health care system, but positively impacts on how well patients adjust to the illness Despite their value, caregivers remain largely a hidden workforce operating with little to no formal support This comes at a particularly high cost to caregivers health

3 Physical health problems (e.g., fatigue, pain, loss of physical strength, loss of appetite, weight loss) Burden related to responsibilities (e.g., assisting with mobility, managing patient s symptoms) Social problems (e.g., hard to concentrate at work, balancing multiple roles, difficulty to pay bills, change in employment status) Impact of cancer on partners and caregivers Emotional problems and reactions (e.g., anxiety and depression) Stenberg et al. (2010). Review of the literature on the effects of caring for a patient with cancer. Psycho-Oncology, 19(10),

4 1 The responsibility that caregivers take on has prompted in-depth documentation into the kind of support they need 2 3

????????? Limitations of current research Cross-sectional Small samples Focus

States, Europe & Canada Partners & Caregivers Well-being Study Longitudinal

common cancers in Australia Main aim: Describe changes in anxiety, depression,

5 ????????? Limitations of current research Cross-sectional Small samples Focus on caregivers of women with breast cancer or men with prostate cancer United States, Europe & Canada Partners & Caregivers Well-being Study Longitudinal study of partners and caregivers of patients diagnosed with one of the 8 most common cancers in Australia Main aim: Describe changes in anxiety, depression, quality of life, and unmet needs and identify variables associated with these outcomes

6 Partners & Caregivers study Wave 1 6 months (n=547) Wave 2 1 year (n=521) Wave 3 2 years (n=442) Wave years (n= 386) Wave 5 5 years (n=350) Multi-dimensional outcomes: Self-administered scannable survey Anxiety: Hospital Anxiety & Depression Scale Depression: Hospital Anxiety & Depression Scale Perceived needs: Supportive Care Needs Survey- Partners & Caregivers Quality of life: SF-12 Coping: Brief Cope Social support: MOS Social Support Survey Caregiver burden, role involvement and financial strain Demographics, patient disease and treatment characteristics

The Supportive Care Needs Survey for Partners and Caregivers

7 Supportive Care Needs Survey Partners and Caregivers Girgis, A., Lambert, S., Lecathelinais, C. (2010). The Supportive Care Needs Survey for Partners and Caregivers of Cancer Survivors: Development and Psychometric Evaluation. Psycho-oncology.

8 Demographics (n=219) Demographics % Gender: Female 73 Age: Country of origin: Australia 80 Marital Status: Married 93 Relationship to cancer patient: Partner 91 Education: Primary school/secondary not completed 17 Secondary school 24 Trade, TAFE, University 48 Employment: Employed/student 49 Unemployed/retired 34 Household duties 8 Current Household Income: <$500 pw 24 $500-$799 pw 25 $800-1,000 pw 15 >$1,000 pw 21

9 Diagnosis of the patients (n= 219) Leukemia 1% Head and neck 8% Colorectal 12% Lung 2% NHL 14% Melanoma 12% Breast 16% Colorectal Breast Prostate Melanoma Lung NHL Head and neck Prostate 35% Leukemia

10 % Sample How many caregivers need more help with at least one unmet need? 100 Average number of unmet needs reported % 50.7% 41.1% 34.7% 40.6% Wave #1 Wave #2 Wave #3 Wave #4 Wave #5 Wave #1 6 months Wave #2 1 year Wave #3 2 years 7.0 (SD= 10.00) 4.3 (SD = 7.8) 3.2 (SD = 6.4) Wave #1 Wave #2 Wave #3 Wave #4 Wave #5 6 months 1 year 2 years 3.5 years 5 years Waves Wave #4 3.5 years Wave #5 5 years 2.9 (SD = 7.0) 4.2 (SD = 8.7)

11 What kind of help do caregivers need? 30 Standardized average number of unmet needs Unmet need domains Information need Health services need Work need Emotional need 5 0 Wave #1 Wave #2 Wave #3 Wave #4 Wave #5 6 months 1 year 2 years 3.5 years 5 years Wave

12 What kind of help do caregivers need? Top unmet needs at 6 months (Wave 1) 35 30% Wave 1

13 What kind of help do caregivers need? Top unmet needs at 1 year (Wave 2) Wave 1 Wave 2

14 What kind of help do caregivers need? Top unmet needs from 6 months and 5 years Wave 1 Wave 2 Wave 3 Wave 4 Wave 5 Core, stable unmet needs

15 What kind of help do caregivers need? Core, stable unmet needs across time Core unmet needs 14-Reduce stress in the person with cancer 31-Manage concerns cancer coming back 32-Impact cancer had on relationship 33-Experience of person with cancer 34-Balance needs 35-Adjust changes in person s body 36-Addres problems with sex life 39-Work through feelings about death

16 Top unmet needs from 6 months and 5 years Wave 1 Wave 2 Wave 3 Wave 4 Wave 5 Prevalent unmet needs

17 Are the most frequent unmet supportive care needs the best predictors of caregivers anxiety and depression?

18 Implications Unmet needs Identify most prevalent unmet supportive care needs Caregiver intervention Developed often to address most prevalent unmet supportive care needs Efficacy of caregiver interventions Anxiety Depression Stress Distress Burden

19 Hospital Anxiety and Depression Scale (HADS) 7-item anxiety and depression subscale Subscale scores range from 0-21 Scores > 7-8 are clinically significant Minimal clinically significant difference = 1.5

20 Are the most prevalent needs those most associated with caregivers anxiety and depression at 6 months? % of caregivers needing more help with a need item Top 10 Results of PLS % VIP (PLS) 6 months

21 Are the most prevalent needs those most associated with caregivers anxiety and depression at 1 year? % of caregivers needing more help with a need item Top 10 Results of PLS % VIP (Wave 2)

22 Subset of 11/44 unmet needs with a value < 1 Not prevalent 1-Access information on carer needs 18-Access info fertility problems 2-Access information on prognosis 20-Find accessible hospital parking 9-Be involved in person s care 10-Discuss concerns with MDs 11-Feel confident MDs talking to each other 12-Ensure case manager coordinate services 24-Obtain life and/or travel insurance 25-Access legal services 43-Explore spiritual beliefs

23 Subset of 33/44 unmet needs further considered for regression analyses Core unmet needs Prevalent Not prevalent 14-Reduce stress in the person with cancer 15-Look after your own health 38-Get emotional support for loved ones 30-Handle topic of cancer in social situations 31-Manage concerns 37-Get emotional 26-Communicate with person 5-Access info person s physical cancer coming back support for self caring for needs 32-Impact cancer had 42-Make decisions in 27-Communicate with the 6-Access info treatment side-effects on relationship context of uncertainty family 33-Experience of 40-Deal with lack of 8-Access health care services person with cancer acknowledgment 34-Balance needs 44-Find meaning 4-Access info alternative therapies 35-Adjust changes in 41-Cope person s recovery 13-Make sure complaints addressed person s body not as expected 36-Addres problems 7-Obtain best medical care 3-Access info services for carers with sex life 39-Work through feelings about death 23-Find financial support 16-Obtain adequate pain control 22-Impact of cancer on carer working life 21-Adapt changes person s working life 28-Get support from your family 29-Talk to other carers 19-Care on a practical level, e.g., bathing 17-Fears about deterioration

24 Regression analysis: Depression - All unmet needs lead to a difference greater than 1.5 ( ) 6 months 1 year 2 year 3.5 years 5 year 42-Make decisions in context of uncertainty 22- Impact of cancer on carer working life 42-Make decisions in context of uncertainty 15-Look after your own health 40-Deal with lack of acknowledgment 17 - Address fears about deterioration 41-Cope with recovery not as expected 23-Find financial support 15-Look after your own health 42-Make decisions in context of uncertainty

25 Regression analysis: Anxiety - All unmet needs lead to a difference greater than 1.5 ( ) 6 months 1 year 2 year 5 year 3.5 years 42-Make decisions in context of uncertainty* 21-Adapt changes person s working life 39-Work through feelings about death 17 - Address fears about deterioration 22- Impact of cancer on carer working life* 15-Look after your own health* 39-Work through feelings about death 31-Manage concerns cancer coming back 31-Manage concerns cancer coming back 37-Get emotional support for self 14-Reduce stress in the person with cancer 23-Find financial support*

26 Summary final results 6 months 1 year 2 years 3.5 years 5 years Core, stable unmet needs 14-Reduce stress in the person with Few core, stable Anxiety cancer unmet needs, are 31-Manage concerns cancer coming Anxiety Anxiety back associated with All prevalent 39-Work through feelings about death Anxiety anxiety (none Anxiety Prevalent, unmet needs needs are 15-Look after your own health with depression) at some Anxiety point Depression Depression 37-Get emotional support for self significantly Anxiety 42-Make decisions in context of Anxiety Depression associated with Depression uncertainty Depression Not prevalent, but depression important 17 - Address fears about deterioration Anxiety and/or anxiety Depression 21-Adapt changes person s working Anxiety life 22- Impact of cancer on carer working life 23-Find financial support 40-Deal with lack of acknowledgment 41-Cope with recovery not as expected Less prevalent unmet needs were significant at selected waves Anxiety Depression Depression Depression Anxiety Depression

27 Caregiver Intervention Implications Main modules - Reduce stress in the person with cancer - Manage concerns cancer coming back - Work through feelings about death - Look after your own health - Get emotional support for self - Make decisions in context of uncertainty Optional modules based on assessment - Address fears about deterioration - Adapt changes person s working life - Impact of cancer on carer working life - Find financial support - Deal with lack of acknowledgment - Cope with recovery not as expected Outcomes Anxiety Depression

28 Dr. Sylvie Lambert, PhD Assistant Professor, Ingram School of Nursing Room 400, Wilson Hall Thank You

The American Cancer Society National Quality of Life Survey for Caregivers

The American Cancer Society National Quality of Life Survey for Caregivers Rachel S. Cannady Strategic Director, Cancer Caregiver Support Atlanta, GA Agenda Definition and prevalence of cancer survivorship