Betty Ferrell, PhD, RN, MA, FAAN, FPCN, CHPN Professor and Director

Division of Nursing Research and Education City of Hope National Medical Center

Palliative Care Interventions for the Caregiver

Disclosure

None

Objectives

1. Describe a synthesis of literature about family caregivers in the care of cancer patients.

2. Describe a model of support for family caregivers including assessment of caregiver needs and teaching based on a model of Family Caregiver QOL.

3. Identify resources for Family Caregiving research.

Literature Review 2010-2016

• 810 citations reviewed • 50 RCTs • Compared to 29 RCTs in review by Northouse for

1983-2009

Ferrell & Wittenberg, (2017)

72 interventions across the 50 RCTs:

• Psychoeducational 64% • Skills training 22% • Therapeutic counseling 15%

Ferrell. B., Wittenberg, E. A Review of Family Caregiving Intervention Trials in Oncology. CA CANCER J CLIN 2017;00:00–00

• Only 11% of interventions involved <3 hours time. • 53% were couples based • Most involved a combination of in person and

telephone contact • Delivered by a nurse (35%) or psychosocial provider

(39%)

Intervention Content

• Patient caregiver/symptom management (72%) • Caregiver self care (68%) • 77% of caregivers were spouses • 72% female • 86% Caucasian • Most common measures were QOL, stress,

communication, intimacy, caregiving tasks

Palliative Care for Quality of Life and Symptom Concerns in Lung Cancer:

Final Results in a 5 year Program Project

Sun V, Kim J, Irish T, Borneman T, Sidhu R, Klein L, Ferrell B. (2015). Palliative care and spiritual well-being in lung cancer patients and family caregivers. Psycho-Oncology, 2015 Jan. 1. Sun V, Grant M, Koczywas M, Freeman B, Zachariah F, Fujinami R, Del Ferraro C, Uman G, Ferrell B. (2015). Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer. Cancer, 121(20): 3737-3745. DOI: 10.1002/cncr.29567. NIHMSID: NIHMS703117. Ferrell B, Sun V, Hurria, A, Cristea, M, Raz D, Kim J, Reckamp K, Williams AC, Borneman T, Uman G, Koczywas M. (2015). Interdisciplinary Palliative Care for Patients with Lung Cancer. Journal of Pain and Symptom Management, 50(6):758-767.

• Aim 1: Test the effects of a Family Caregiver Palliative Care Intervention (FCPCI) for informal caregivers of patients with early and late stage lung cancer on caregiver burden and caregiving skills preparedness as compared to a group of FCG in a usual care situation.

• Aim 2: Test the effects of a FCPCI for informal caregivers of patients with early and late stage lung cancer on FCG QOL and psychological distress as compared to a group of FCG in a usual care situation.

• Aim 3:Describe early and late stage FCG self care behavior, comparing the usual care and FCPCI groups.

• Aim 4: Describe resource use by early and late stage FCG comparing the usual care and FCPCI groups.

• Aim 5: Identify subgroups of FCG who benefit most from the FCPCI in relation to sociodemographic characteristics, and clinical/functional factors.

Project #3 Family Caregiving NSCLC

Palliative Care Intervention Components

Assessment of Patient and family Caregiver QOL •Physical •Psychological •Social •Spiritual

Nursing Coordination of Care Based on IDT •Patient/Caregiver Education •IDT Support •Phone Support

Interdisciplinary Team Conference to Patient and Family Caregiver Plan Care

• Held after baseline questionnaires are completed • Organized around the QOL domains (physical,

psychological, social, spiritual) • Patient and family caregiver reported data is summarized

by the APN • Each professional makes recommendations • Tailored intervention is planned

Interdisciplinary Care Conference (ICC)

PCI Interdisciplinary Care Plan

Key Teaching Points: Family Caregivers Part 1: Physical Well-Being and Self-Care

Managing Patient Sx • Appetite Problems/Weight

Loss • Skin, Nail, Hair Changes • General Information on Caring

for the Patient’s Physical Symptoms

• Breathing Problems and Cough

• Pain • Constipation • Fatigue • Sleep Problems • Nausea and Vomiting

Caregiver Needs • Caregiver’s Bill of Rights • Caring for Your Own Health

Needs • Information on How to Quit

Smoking

Your Self-Care Plan Resources: Physical Well-Being

Part 2: Psychological Well-Being

• Worry and Fear • Depression • Anger • Cognitive Changes • General Information on Caring for the Patient’s

Emotional Needs • Caring for Your Own Emotional Needs Refining Your Self-Care Plan Resources: Psychological Well-Being

Part 3: Social Well-Being • Changes with Relationships • Communication • Sexual Changes • Social Support • Financial Burdens • Healthcare Planning • General Information on Caring for the Patient’s Social

Concerns • Caring for Your Own Social Needs Refining Your Self-Care Plan Resources: Social Well-Being

Part 4: Spiritual Well-Being • Purpose and Meaning in Life • Hope • Redefining Self and Priorities in Life • Inner Strength • Uncertainty • Positive Changes • General Information on Caring for the Patient’s Spiritual

Concerns • Caring for Your Own Spiritual Needs

Refining Your Self-Care Plan

Resources for Spiritual Well-Being

Outcomes

P01 Demographics Patients FCGs

Usual Care Intervention Usual Care Intervention

Age Mean (SD)

63.52 (10.96)

66.17 (11.32)

57.23 (13.16)

57.54 (14.31)

Gender Male Female

90 (41.1%) 129 (58.9%)

99 (36.4%) 173 (63.6%)

59 (36.2%) 104 (63.8%)

80 (39.4%)

123 (60.6%) Race/Ethnicity White Asian Hispanic/Latino

166 (75.8%) 32 (14.6%) 15 (6.8%)

217 (79.8%) 32 (11.8%) 19 (7.0%)

115 (70.6%) 25 (15.3%) 11 (6.7%)

167 (82.3%) 16 (7.9%) 24 (11.8%)

Education High School College

78 (35.8%)

137 (62.8%)

93 (34.2%) 177 (65.1%)

61 (37.4%)

100 (61.3%)

55 (27.1%)

147 (72.4%)

Smoking History Current Smoker Former Smoker Non-Smoker

14 (6.4%) 138 (63.0%) 67 (30.6%)

16 (5.9%) 186 (68.4%) 70 (25.7%)

14 (8.6%) 63 (38.7%) 86 (52.8%)

15 (7.4%) 75 (36.9%) 113 (55.7%)

Disease Stage

Usual Care Intervention

Stage I 34 (15.5%) 54 (19.9%)

Stage II 20 (9.1%) 29 (10.7%)

Stage III 51 (23.3%) 47 (17.3%)

Stage IV 114 (52.1%) 142 (52.2%)

Average Length of Teaching Sessions (Minutes)

Session Patients FCGs

Physical 43.7 34.8

Psychological 36.0 27.8

Social 31.1 25.5

Spiritual 32.4 25.0

Most Frequently Selected Teaching Topics QOL Domain Early Late FCG

Physical Well-Being

Fatigue (76%) Pain (49%) Sleep (37%) Constipation (31%) Dyspnea (30%)

Fatigue (63%) Dyspnea (35%) Skin, hair, nail changes (32%) Cough (30%) Constipation (28%)

Fatigue (63%) Pain (49%) Appetite (38%) Dyspnea / Cough (36%) Sleep (26%)

Psychological Well-Being

Worry & Fear (85%) Depression (48%) Anger (15%) Cognitive Changes (7%)

Worry & Fear (77%) Depression (59%) Cognitive Changes (59%) Anger (30%)

Worry & Fear (88%) Depression (58%) Anger (42%) Cognitive Changes (41%)

Social Well-Being

Social Support (79%) Communication (43%) Changes in Relationship (36%) Financial Burden (21%) Sexuality (16%)

Health Care Planning (67%) Communication (57%) Changes in Relationship (52%) Social Support (51%) Financial Burden (27%)

Communication (78%) Health Care Planning (61%) Changes in Relationship (55%) Social Support (50%) Financial Burden (15%)

Spiritual Well-Being

Hope (89%) Inner Strength (84%) Uncertainty (75%) Purpose/Meaning in Life (23%) Spiritual or Religious (11%)

Hope (55%) Positive Changes (47%) Inner Strength (45%) Redefining Self & Priorities (37%) Uncertainty (35%)

Purpose/Meaning in Life (54%) Hope (49%) Inner Strength (49%) Redefining Self & Priorities (39%) Positive Changes (28%)

Multivariate Analysis of Patient Main Outcomes at 12 Weeks

a Adjusted means b Main effect of group c Interaction between group and stage d Pillai’s Trace Multivariate p value of < .001 for group and for group by stage interaction

Outcome Usual Care Intervention P Value N ±SD a N ±SD a Mainb Interc

FACT-L (Range = 0-140; higher = better QOL)

Early 102 93.7±20.6 97.7 129 115.4±12.6 112.5

Late 91 105.3±20.1

105.2 135 105.8±18.8 105.7 <.001 <.001

Total 193 99.2±21.1 101.4 264 110.5±16.8 109.1

Lung Cancer Subscaled (Range = 0-32; higher = better QOL)

Early

105 22.2±4.8 23.1 129 27.1±3.4 26.2

Late 106 24.7±5.1 24.8 135 25.2±4.6 25.4 <.001 .003

Total

211 23.4±5.1 23.9 264 26.2±4.2 25.8

FACIT-Sp-12 (Range = 0-48; higher = better spiritual well-being)

Early

105 33.4±9.5 35.5 129 40.3±7.5 39.1

Late

106 37.3±8.9 37.2 135 37.5±9.7 37.1 .001 .001

Total 211 35.4±9.3 36.3 264 38.9±8.8 38.1

Psychological Distress (Range = 0-10; higher = more distress)

Early

102 3.5±2.8 3.5 129 1.8±1.9 1.7

Late 91 3.0±2.5 3.1 135 2.6±2.4 2.7 <.001 .001

Total 193 3.2±2.7 3.3 264 2.2±2.2 2.2

Health Care Utilization Outcomes and Quality Measures for End of Life Care

Usual Care Intervention Total

N (%) N (%) N (%) p-Value

One or More Referrals 62 (28.3%) 166 (61.0%) 228 (46.4%) <.001

Chaplaincy 2 (0.9%) 40 (14.7%) 42 (8.6%) <.001

Nutrition 17 (7.8%) 60 (22.1%) 77 (15.7%) <.001

Pain/Palliative Care 6 (2.7%) 18 (6.6%) 24 (4.9%) .04

Psychology/ Psychiatry 7 (3.2%) 12 (4.4%) 19 (3.9%) .48

PT/OT 8 (3.7%) 6 (2.2%) 14 (2.9%) .33

Pulmonary Rehabilitation 16 (7.3%) 33 (12.1%) 49 (10.0%) .07

Social Work 28 (12.8%) 89 (32.7%) 117 (23.8%) <.001

Unscheduled Admissions 17 (7.8%) 12 (4.4%) 29 (5.9%) .11

Unscheduled Encounters 41 (18.7%) 87 (32.0%) 128 (26.1%) .001

Advance Care Directive 20 (9.1%) 120 (44.1%) 140 (28.5%) <.001

Hospice Referral 11 (52.4%) 11 (45.8%) 22 (48.9%) .66

Multivariate Analysis of FCG Outcomes at 12 Weeks

Outcome

Usual Care

(N=157)

Intervention

(N=197) p-Value

SD SD Main

Psychological Distress (Range=0-10; higher=more distress)

.010

4.61 2.88 4.20 2.36

Physical QOL2 .886 7.06 1.76 7.26 1.73

Psychological QOL2 .803 5.24 1.62 5.53 1.38

Social QOL2 <.001* 6.00 1.89 6.48 1.71

Spiritual QOL2 .043

6.54 1.80 6.32 1.59

Total QOL2 .484 5.93 1.42 6.16 1.27

1 Main Effect of Group 2 Range = 0-10; higher scores = better QOL

Conclusions

• PCI improved patient outcomes including QOL, symptoms distress, spiritual well being

• PCI improved family caregiver distress, social and spiritual well being

• 6 month survival increase (32 vs 38 months) • Utilization and Quality Improvements in supportive

care referrals and advanced directives

Improving QOL and Quality of Care for Poor and Underserved Caregivers

Betty Ferrell (PI) American Cancer Society

(2013-2018)

Translation of a Lung Cancer Palliative Care Intervention for Clinical Practice.

• Betty Ferrell, PhD, RN, MA, FAAN, FPCN.

Beckman Research Institute of the City of Hope • Huong Nguyen, PhD, RN. Kaiser Permanente

R01 Funded by NINR (2016-2018)