Symptom Management for Rural Cancer Patients

Transcription

1 Symptom Management for Rural Cancer Patients Kathi Mooney, PhD, RN Co-Leader Cancer Control and Population Sciences Huntsman Cancer Institute Salt Lake City, Utah

2 The Huntsman Cancer Institute catchment area covers 17% of the continental US landmass and 5 Intermountain West states Utah population- 3 million people Utah encompasses nearly 85,000 square miles 96 % of Utah is rural (<100 persons/mi 2 ) 70% of Utah is frontier (<7 persons/mi 2 ) Utah is home to 7 Native American tribes/nations Sparse population densities: Utah = 35.5 people/mi 2 Nevada = 26.3 people/mi 2 Idaho = 20.0 people/mi 2 Montana = 7.1 people/mi 2 Wyoming = 6.0 people/mi 2

3 Key Challenges for Rural Populations Once Diagnosed General issues Health literacy Rural culture- importance of self reliance and maintaining rural lifestyle Health status- comorbidities Contribution of social determinants of health such as low SES Transportation, weather interference, and travel time to access care Increased need for caregiver support to travel for care Financial burden, underinsured, maintaining employment and family care responsibilities during care for both patient and caregiver Diagnosis Early detection Cancer Center access Adequate staging and molecular profiling Treatment Access to clinical trial Access to radiation Symptom and Supportive Care Access to both physical and psychosocial monitoring and care between clinic visits Access to palliative care Survivorship Surveillance, follow-up care Late effects, functional status, QoL Healthy lifestyle adherence End-of-Life Access to palliative care Access to hospice care Family caregiver support

4 Patient Experience of Moderate to Severe Symptoms During Treatment N=179; 25% rural/frontier; rural > symptom severity at baseline Symptom 4 or > on 10 point scale % Fatigue 86 Pain 80 Trouble sleeping 78 Nausea/vomiting 60 Depressed mood 52 Anxiety 49 Trouble thinking/concentrating 48 Numbness/tingling 42 Diarrhea 38 Sore mouth 38 Distress with appearance change 34

5 Family Caregiver Experience of Moderate to Severe Distress N= 154; Family Caregivers during Home Hospice Care Symptom 4 or > on 10 point scale % Fatigue 84 Interference with normal activities 81 Anxiety 78 Difficulty sleeping 78 Depressed mood 73

6 Consequences of Poorly Controlled Patient Symptoms Suffering Decreased quality of life Poor functional status Emergency departments visits Unplanned hospitalizations Treatment delays Poor adherence to oral therapies Discontinuance of therapy Work absenteeism and presenteeism Inability to carry out family and societal roles

7 Consequence of Poorly Controlled Caregiver Symptoms Suffering Decreased quality of life Work absenteeism and presenteeism Chronic stress Increased risk for cardiovascular disease, stroke, cancer, and earlier death Increased risk for complicated grief

8 Cancer Moonshot Recommendations Recommendation F. There is a compelling need to improve symptom care for cancer patients and cancer survivors. Symptom management is key not only to improve quality of life but also for ensuring patient adherence to treatment that will lead to improved therapeutic response and ensure survival.

9 Cancer Care Delivery System Mismatch for Symptom Care Current Context Assess symptoms at clinic visits (when symptoms are lowest) Symptoms fluctuate over the treatment trajectory Patient teaching and resources are not timed to need nor tailored to the patient s experience Patients are instructed to call providers for poorly controlled sympotms but do only 5% of the time Family caregiver needs are not addressed Policy and System Inadequate reimbursement for symptom monitoring or for intensifying symptom care beyond the walls of the clinic/hospital Issue of medical care beyond state lines without state licensure No reimbursement for family caregiver interventions/care Inadequate palliative and evidence-based symptom care available as a local resource in rural communities

10 Current Evidence for Rural Symptom/Palliative Care Sparse research base Limited study of symptom burden and care models in US rural populations Few prospective, longitudinal studies Few rural-focused interventions Inadequate study of informal caregiving in rural settings, caregiver burden and health consequences Insufficient evidence base to guide care delivery models and policy for rural living cancer survivors on or off active treatment

11 Extending Care beyond the Cancer Center Walls NCI funding: RO1CA120558, R01 CA89474, PO1CA Publications: Mooney et al. Cancer Med 2017; Mar. 6(3): ; Mooney et al. Support Care Cancer 2014; 2(9):

12 Symptom Care at Home: remote care Telephone based- interactive (automated) voice response system (IVR) 1. Daily automated monitoring of common symptoms (presence, severity (1-10), drilldown for rapid triage) of patient and caregiver 2. Automated algorithm-based patient or caregiver coaching based on reported symptoms and intensity. Short-term and long-term behavioral change coaching. 3. Automated alerting of clinicians for poorly controlled symptoms- symptom graphs for patterns and guideline-based decision support system for intensifying care

13 Significant Benefit for Patients Daily automated calls 5 min. in length with 90% call adherence For Chemotherapy (n= 358; breast, lung, colon, ovarian): Significantly less symptom severity than usual care; p < % less severe symptom days than UC (8-10 severity, 0-10 scale); p< % less moderate symptom days than UC (4-7 severity); p< % more mild days than UC (1-3 severity); p= % more asymptomatic days than UC;(0- not present) p=.006 No difference in outcomes rural vs urban residence For Hospice/End of Life (n= 154): Significantly less symptom severity for patients than usual hospice care; p=.03 Rapid onset of patient benefit compared to usual hospice care; p<.02

14 Family Caregiver Well-being 51% reduction in the number of daily moderate-tosevere symptoms for family caregivers (p<.001) 38% less moderate-severe caregiving disruptive days for family caregivers (p<.001) In SCH (but not UC), caregiver symptom reduction mediated a reduction in patient symptoms, p=.027 Supporting caregiver s health translates to improved patient symptom outcomes; both are benefited 6 th month of bereavement, SCH spouses showed better outcomes than UC spouses (p=.01)

15 Caregiver vitality maintained during caregiving. Lower fatigue, better sleep, and less activity disruption (p<.001) Green = usual hospice care Blue = addition of Symptom Care at Home Higher symptom values = less vitality

16 Technology Debate Question assumptions Ask the participants what they think of the technology and how to improve it Newest technology or range of platforms Adaptability and Scalability Technology is the vehicle for your interventions; it is not your intervention Monitoring is not enough Technology can touch people Technology can unite patients/families with the touch they need when they need it

17 Post-Intervention Interviews I did my calls at the end of the day and it was a release of sorts for me the time I spent alone at night to reflect on mom s day and how she did. Good outlet/input for me-pointing out I wasn t alone and she was not really unusual. It gave me a sense of confidence that what I was seeing and feeling was normal. It helped calm me when I was having a bad day.

18 Being able to anonymously tell someone what is going on made it easier to be helped. It felt like someone else was listening to what I had to say. Another person on the team. It made me realize I was forgetting who he had been. I was just seeing him as a sick person- that was so helpful so I could change. It got me through the hardest time in my life..