Developing a sustainable and efficacious coping skills intervention for patients with cancer and their caregivers Dr Sylvie Lambert, N, PhD Assistant Professor, Ingram School of Nursing
Context for my ongoing work
Psychosocial oncology program of work Diagnosis Treatment Survivorship End-of-life Descriptive research Patients and caregivers information needs and preferences Preferences for support services and mode of delivery Impact of cancer on partners and caregivers and predictors of outcomes Interdependencies among patients and caregivers well-being outcomes Intervention research self-care interventions Coping-Together Intervention a self-directed coping skills intervention for patients with cancer and partners Evaluating a stepped care model for the delivery of illness self-management interventions to patients and their caregivers Consumer Toolkit self-care intervention for families facing advanced cancer Psychometric research Classical Test Theory (e.g., Profile of Preferences for Cancer Information) Rasch analysis (co-calibration of measures, item banking)
Impact of cancer on partners and caregivers Caregivers have always played a major role in providing cancer care However, their level of involvement in complex illness management tasks, including providing technical, physical, or emotional support, is increasing Caregivers involvement reduces the demands on health care system and impact on how well patients adjust to the illness This comes at a particularly high cost to caregivers physical, emotional, and social functioning = A marked increase in the attention given to the ripple effects of a cancer diagnosis and ensuing treatment on caregivers
Impact of cancer on partners and caregivers Physical health problems (e.g., fatigue, pain, loss of physical strength, loss of appetite, weight loss) Social problems (e.g., hard to concentrate at work, balancing multiple roles, difficulty to pay bills, change in employment status) 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, 1013-1025
????????? Limitations of current research Cross-sectional Small samples Focus on partners of women with breast cancer or men with prostate cancer Partners & Caregivers 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
Partners & Caregivers study 6 months (n=547) 1 year (n=521) 2 years (n=442) 3.5 years (n= 386) 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
Anxiety at 6, 12 and 24 months 50 % of sample 45 40 35 30 25 20 15 10 p <.001 38% 24% p <.001 p <.001 31% 28% 22% 20% Caregivers Survivors p <.001 5 0 6 months 12 months 24 months N caregivers = 540 N survivors = 1351 N caregivers = 514 N survivors = 1246 N caregivers = 422 N survivors = 1100 Lambert, S. D., Girgis, A., Lecathelinais, C., & Stacey, F. (2013). Walking a mile in their shoes: Prevalence and predictors of anxiety and depression in caregivers of cancer survivors. Supportive Care in Cancer, 21(1), 75 85.
Depression at 6, 12 and 24 months 50 45 % of sample 40 35 30 25 20 15 10 p =.14 p =.04 p =.77 17% 16.5% 14% 13% 12% 11% Caregivers Survivors 5 0 6 months 12 months 24 months p =.04 N caregivers = 540 N survivors = 1352 N caregivers = 514 N survivors = 1247 N caregivers = 427 N survivors = 1100
Differential patterns of change over time At 6 months At 24 months Psychological morbidity LOW RESOLVED WORSENED CHRONIC
Trajectories for anxiety groups Clinical Group 4-13.9% Anxiety Borderline Group 3-33.2% Group 2-37.8% Group 1-15.1% Time Lambert, S. D., Jones, B., Girgis, A., Lecathelinais, C. (2012). Distressed partners and caregivers do not recover easily: Adjustment trajectories among partners and caregivers of cancer survivors. Annals of Behavioral Medicine, 44(2), 225-235.
Trajectories for depression groups Clinical Group 4-4.1% Depression Borderline Group 3-25.5% Group 2-35.1% Group 1-38.9% Time Lambert, S. D., Jones, B., Girgis, A., Lecathelinais, C. Trajectories of Anxiety and Depression Among Caregivers of Cancer Survivors within the First Two Years Post Survivor Diagnosis. Submitted to Annals of Oncology September 2011
Variable associated with anxiety group 4 (chronic clinical anxiety) Age and sex Country of birth Marital status Education, employment, income Relationship to the survivor } Caregiver-survivor living arrangements Cancer type Survivor s age Coping Physical Quality of life Unmet supportive care needs Involvement in caregiving role Out-of-pocket expenses Interference in daily activities Social Support Less likely More likely
Variables associated with depression group 4 (chronic clinical depression) Age and sex Country of birth Marital status Education, employment, income Relationship to the survivor Caregiver-survivor living arrangements Survivor s age and cancer type Coping Physical well-being Unmet supportive care needs Involvement in caregiving role Out-of-pocket expenses Interference in daily activities Social Support } Less likely More likely
All pieces of the puzzle.. Intervention implemented within the first 6 months postdiagnosis Couple-based coping skills training intervention Main variables associated with illness adjustment: avoidant coping, caregiver burden, social support, and unmet needs Similar variables associated with patients distress Patients and partners react to the cancer diagnosis as an interdependent emotional system
Couple-based coping skills training interventions Couple-based coping interventions can be more efficacious than patient only interventions in optimising patient adjustment (Scott et al, 2004) and more efficacious than usual care in enhancing partners adjustment (Kayser et al., 2010; Northouse et al., 2007) Outcomes of couple-based interventions: Global QOL Self-efficacy Adaptive coping and problem-solving Relationship functioning and communication Social adjustment (maintain family, vocational, and social roles) Positive illness or caregiving appraisal Physical distress Psychological distress Sustained effects up to one year post-intervention (Baucom et al., 2009; Campbell et al., 2007; Kayser et al., 2010; Kurtz et al., 2005; Manne et al., 2005; Nezu et al., 2003; Nezu et al., 2003; Scott, Northouse et al., 2005; Northouse et al., 2007; Northouse et al., 2010; Scott, Halford, & Ward, 2004)
Couple-based coping skills training interventions Limitations Delivered by highly trained health professionals limiting longterm sustainability, due to high cost and limited availability of qualified professionals Cited deterrents for patients and partners Uptake of couple-based interventions as low as 13% (Regan, Lambert et al., 2013) Reasons for refusal: too busy, intervention did not meet expectations, and not willing to travel for intervention The challenge Develop a cost-effective, sustainable and efficacious intervention to ensure that patients and families have timely access to the information and support they need
Sustainability versus Efficacy Group Format Tatrow & Montgomery (2006, meta-analysis) found studies with individual treatment approaches had significantly larger effects vs group approaches for distress (p = 0.04) Telephone Cusack & Taylor (2010, review) - telephone follow-up care was acceptable to patients, cost-effective and at least equivalent to traditional care in meetings needs Livingston, White, Hayman et al. (2010) - no impact of a telephone intervention delivered by cancer nurses on adjustment of men diagnosed with colorectal or prostate cancer Self-directed/self-care/self-administered Found to be acceptable to patients, efficacious in enhancing patient well-being, particularly among distressed individuals, and cost-effective (Beatty et al., 2009; Krischer et al., 2007; Ramachandra et al., 2009; Tuinman et al.,2008) Self-help interventions, either print- or computer-based, have been shown to enhance individual well-being, including anxiety and depression (Gellatly et al., 2007; Mains & Scogin, 2003)
Improved QOL Self-directed interventions
Multi-media, self-directed coping skills intervention Core component - series of six booklets translate the most up-to-date research on effective, practical coping strategies and presents these to couples as suggestions to address specific physical and psychosocial challenges 1. Symptom management 2. Managing worries and emotions 3. Supporting each other 4. Getting what you need from your health care team 5. Treatment decision-making 6. Considering your support options
DVD features clinicians who explain key aspects of the booklets. Also, includes role plays with couples demonstrating specific coping skills Website includes material from the booklets, videos from the DVD, and a forum for patients and/or partners to share their experiences with the resource Top Tips Newsletter features strategies that might be most appropriate at that time
program of work Phase 1 - Began development of Coping- Together and initial, qualitative feasibility study Phase 2 - Funding - Clinical Oncological Society of Australia (COSA) - Pilot Phase 3 - Funding - NHMRC Project Grant Phase 2 - COSA Pilot resource finalised and recruitment commenced Phase 3- Finalise resource Phase 3- Begin recruitment November 2009 July 2010 January 2011 January 2012 December 2012 February 2013
Aim: Feedback on the booklets appropriateness and willingness to use these to learn about coping strategies Sample: Sample: Convenience sample of individuals diagnosed with cancer and their partner participating in the initial qualitative feasibility study (N= 27 patients & 14 partners) Data Collection: Semi-structured interviews Data analysis: Interviews audio-recorded and transcribed verbatim. Transcripts reviewed line-by-line and coded for content in relation to the study s key aims Phase 1: Qualitative, feasibility study key findings
Self-directed format endorsed Most participants endorsed the intervention s self-directed format patients and partners can use Coping-Together at their own pace, in their own time For some, self-directed resource in preference to attending a support group I m not really into support groups [...] Because you have seen what I m like [patient teary during interview] - I don t like doing this in front of people, so I would probably not go [...] to a group, [but something like Coping-Together] where you can do it yourself, yes. (woman, breast cancer)
Focus on patients AND partners endorsed Having a resource that targets partners was also endorsed Patient: I think the other thing too is that you brought in just not another booklet for the patients, but for the support people. That whole concept is really important [ ] that was the most important thing for me [...] it is a relationship between [my partner] and myself and this thing is huge. Partner: the support person needs support too [ ] that s a really, really, really good point. (couple facing colorectal cancer)
Do patients and partners use to learn more about coping with cancer? PHASE 1 - Feasibility Low High Not at all, no interest 10% Minimal use, but interested in learning coping strategies 45% Selective use, only read relevant sections 30% High use, read it all 15%
Benefits of The booklets gave clear directions on how to best cope with challenges, and these were often referred to as a reference guide to coping with cancer They [health professionals] say you need to relax and you need to communicate with your partner and you need to do this and you need to do that but they do not tell you how. I think if you do have some strategies in there to explain that more, that is very beneficial. (woman, breast cancer, feasibility study)
Benefits of Patients and partners learned new ways of coping with challenge Getting what you need from your health care team - Question prompt list: That s really important having those list of questions and prompts, because like I ve said there are things that hadn t even occurred to me. (woman, gynecological cancer) Managing worries and emotions - Relaxation: Offering all these suggestions on how to deal with emotions, with the breathing and your muscle relaxation, meditation all that kind of stuff. I found, really, really useful. (woman, gynecological cancer) Symptom management Incontinence: Incontinence has just crept into our world this last week. So I just saw that there and I thought I will go back to that section and look at that. (partner, man with prostate cancer) Supporting each other Communicating under stress: We have been married for a long time and always spoke to each other, but after reading the booklets we are talking even more openly about my health condition, and how [wife] s coping with it. (man, prostate cancer)
Benefits of Provided a sense of normalcy and hope that something can help you pull through It was just seeing that someone else has the same thoughts and has recognized the same issues and it s not just us trying to fly blind. (partner, woman breast cancer)
Connected patients and partners to people and services - raised awareness of other health care and/or community resources they could call upon Complemented support received from health care professionals So like most psychologists would tell you all this stuff, but then actually having it written down that I can go back to it, so when I m having a really bad day it s like OK, what did I do before? I found it easy that I could then go back and look at it again (woman, breast cancer)
Do patients and partners use to learn more about coping with cancer? PHASE 1 - Feasibility Low High Not at all, no interest 10% Minimal use, but interested in learning coping strategies 45% Selective use, only read relevant sections 30% High use, read it all 15%
Barriers Strategies to overcome or minimize barriers No time - Concise presentation of information (preferably point form) - Tailor to make it more relevant to patients and partners (e.g., by cancer type) - Small booklets so able to take to appointments, on the train - Provide an initial workshop or orientation session Too ill - Provide an initial workshop or orientation session - Use a DVD instead of print Too stressed - Concise presentation of information (preferably point form) - Judicious inclusion of information about how stressful a cancer diagnosis is Relevance of booklets - Tailor to make it more relevant to patients and partners (e.g., by cancer type) not readily apparent - Provide an initial workshop or orientation session Overwhelmed by amount of information included in the booklets Booklets format unattractive/no hook Booklets got lost among all the other resources received Booklets too depressing or too clinical - Include testimonials - Series of small booklets - Provide an initial workshop or orientation session - Concise presentation of information (preferably point form) - Consider tailoring based on challenges experienced - Need page turner e.g., cartoons - Use more humor throughout. Use bright colors - Complement with a DVD. Include testimonials - Sell it make it explicit why someone has to read this resource - Provide an initial workshop or orientation session - Include page turner cartoons/have an attractive cover - Include a questionnaire at the beginning to identify pertinent booklets - Use existing infrastructure to disseminate the resource (e.g., support groups) - Include cartoons/pictures or vignettes - Need to convey that everything is under control
Phase 2 Pilot Suggestions from feasibility Initial orientation session To the point/concise Tailor content to concerns Integrated in pilot version Initial orientation phone call to highlight how resource can help cope with concerns Most critical information within the first 3 pages Short and sweet and do not need to state the obvious Top Tips Newsletter features strategies most relevant at a particular point in time Inclusion of a problem-focused flowchart at the beginning of each booklet to take the place of the table of content clear how the intervention can help
Getting What You Need From Your Health Care Team
Phase 2 Pilot Suggestions from feasibility Use of a DVD Need a page turner Integrated in pilot version Confirmed integration of DVD Meaningfully breakup the text Top tips and Fact boxes Cartoons - Do not underestimate the role of illustrations (Houts, Doak et al., 2006) Include testimonials Quotes to normalise concerns and to report on patients and partners success with the proposed strategies
PHASE 1 - Feasibility Low High Not at all, no interest 10% Minimal use, but interested in learning coping strategies 45% Selective use, only read relevant sections 30% High use, read it all 15% Low PHASE 2 - Pilot High Not at all, no interest 0% Minimal use, but interested in learning coping strategies 30% Selective use, only read relevant sections 30% High use, read it all 40%
Phase 2: Pilot, trends* in efficacy Variables Patients (n = 23) Partners (n = 23) Distress + Self-efficacy Relationship satisfaction + + Caregiver burden N/A + Financial concerns N/A + Perception of the illness as less challenging + + Coping/self-care efforts + *p < 0.3
Investigators: Sylvie Lambert, Afaf Girgis, Jane Turner, Karen Kayser, Patrick McElduff, Cathy Mihalopoulos Project Manager: Janelle Levesque, Research Assistant: Hayley Candler PhD Student: Timothy Regan Supervisor: Brian Kelly Associate Investigators: Suzanne Chambers, Charles Douglas, Jon Gani, Dorothy Keefe, Toni Musiello, Stephen Smith, Paula Vallentine, Lisa Beatty, Peter Chong, Brian Draganic, Grantley Gill, Michelle Marven, Susan Neuhaus, John Stubbs, Richard Wells, Robert Carter, Charles Douglas, David Clarke, John Friedsam, Alexander Grant, Scott Menzies, Christobel Saunders, and Peter Sutherland Expert reviewers: Ben Britton, Catalina Lawsin, Paula Vallentine, Jemma Gilchrist, Kendra Sundquist, Suzanne Chambers, Cancer care coordinators Hunter Valley Health Economist: Sophy Shih, Cathy Mihalopoulos Phase 3: Multicentre Trial