Caregiver Distress Screening Project

Transcription

1 Caregiver Distress Screening Project Melissa Wright, LMSW, OSW-C Program Director Gilda s Club Quad Cities, Davenport

2 Why screen? To be the leader in the delivery of psychosocial care to people touched by cancer by demonstrating a commitment to identifying and reducing the distress that cancer can bring into one s life!

3 Background Cancer caregivers have unique social and emotional needs that result from providing care for their loved one Specifically, needs tend to be centered around social, emotional, and physical health Despite an immediate need, cancer caregivers have few services designed specifically to address these concerns

4 Background Gilda s Club, an affiliate of the Cancer Support Community (CSC) is poised to address the social and emotional needs of caregivers through programs tailored specifically to these individuals In 2015, the CSC affiliate network provided services to 28,370 adult caregivers

5 Psychosocial Needs of Cancer Caregivers As with many subpopulations affected by cancer, cancer caregivers have distinct and often unique needs, including*: help addressing patients concerns about physical or mental deterioration (52.7%) managing concerns about recurrence (44.6%) working through feelings of death (40.8%) accessing information about alternative therapies (36.4%) feeling confident that the patient s doctors were coordinating care (36.2%) obtaining the best care for the patient (35.3%) * Sklenarova, et al. (2015), When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer, 121:

6 Unmet Needs of Cancer Caregivers Most often have multiple unmet needs. According to survey respondents: 43.6% of caregivers have more than 10 unmet needs 42% have fewer than 10 unmet needs 14.4% caregivers reported having no unmet needs Caregivers had significantly more distress and reported higher levels of anxiety than patients Patient and caregiver needs often correspond: When patients had a higher unmet number of needs, cancer caregivers were more likely to have all of the following: - health care service and information needs - emotional and psychological needs - work and social security needs - communication and family needs (Source: Sklenarova, 2015)

7 CancerSupportSource -Caregiver (CSS-CG) CSC developed a novel distress screening tool for cancer caregivers, that is based on our web-based distress screening and referral tool for people with cancer (CSS-Patient) While validated distress screening for patients is essential for quality care, there is an absence of validated measures to identify and address unmet psychosocial needs of caregivers. Refining a Validated Distress Screening Tool of Caregivers of Cancer Patients in a Community- Based Sample Alexandra K Zaleta PhD, Margaret L Longacre PhD, Melissa F Miller MPH PhD, Mitch Golant PhD FAPOS, Vicki Kennedy LCSW, Kayla Miller BS, Emily K Porensky PhD, Joanne S Buzaglo PhD Cancer Support Community, Research and Training Institute, Philadelphia PA To see the poster of this Society of Behavioral Medicine (2017) presentation:

8 Study Conclusions Based on these analyses and multiple iterations of expert review, the scale has been reduced to 31 items, including a previously-validated 4-item depression subscale that mirrors the patient version of CancerSupportSource. Next steps include validation of the reduced scale, developing appropriate educational materials, implementing the CSS-Caregiver distress screening tool within the same digital platform as CSS-Patient, and exploring the impact of caregiver distress screening, referral, and follow-up on health-related quality of life and cost outcomes.

9 Caregiver Screening Project Began with paper version March 29 Implemented electronic version on April 4 To date we have screened 22 caregivers using CSS-CG at Gilda s Club

10 31 Questions CSS-CG Self care, caregiving tasks, concerns about pt.

11 Clinical Report

12 Demographics Female = 16 Male = 6 Average distress score = 33 (low 6/high 75) Survey helpful: yes=16/no=3/na=3 Hours per week of care average = 19 hours Patient s current stage= metastatic 45% Relationship: spouse=50%, adult child=23%

13 Caregiver Top Concerns Concerns for myself Worry about the future Exercising and being physically active Keeping up with my own healthcare needs Providing emotional support Concerns about the person you are caring for Patient s eating and nutrition Changes in the patients mood or behavior Patient s pain or physical discomfort Patient s sleep problems

14 Grant Objectives Goal is to screen 50 cancer caregivers by June 1, 2017 Rescreen 12 caregivers within days

15 Contact Information: Melissa Wright