Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.

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Using Patients and Their Caregivers Feedback to Develop ENABLE CHF-PC: An Early Palliative Care Intervention for Advanced Heart Failure

Journal of Palliative Care ◽

10.1177/0825859718785231 ◽

2018 ◽

Vol 34 (2) ◽

pp. 103-110 ◽

Cited By ~ 5

Author(s):

Imatullah Akyar ◽

J. Nicholas Dionne-Odom ◽

Marie A. Bakitas

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Formative Evaluation ◽

Controlled Trial ◽

Nyha Class ◽

Complex Interventions ◽

Class Iii ◽

Early Palliative Care ◽

Care Intervention ◽

Care Assessment

Objective: Models of early, community-based palliative care for individuals with New York Heart Association (NYHA) class III/IV heart failure and their families are lacking. We used the Medical Research Council process of developing complex interventions to conduct a formative evaluation study to translate an early palliative care intervention from cancer to heart failure. Method: One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient–caregiver dyad participants who completed Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare For Patient and Caregivers (ENABLE CHF-PC) intervention. The ENABLE CHF-PC consists of an in-person palliative care assessment, weekly telehealth coaching sessions, and monthly follow-up. Subsequent to completing the coaching sessions, patient and caregiver participants were interviewed to elicit their experiences with ENABLE CHF-PC. Digitally recorded interviews were transcribed and analyzed using a thematic approach. Results: Patients (n = 8) mean age was 67.3, 62.5% were female, 75% were married/living with a partner; caregivers (n = 8) mean age was 56.8, and 87.5% were female. Four themes related to experiences with ENABLE CHF-PC included “allowed me to vent,” “gained perspective,” “helped me plan,” and “gained illness management and decision-making skills.” Recommendations for intervention modification included (1) start program at diagnosis, (2) maintain phone-based approach, and (3) expand topics and modify format. Conclusion: Patients and caregivers unanimously found the intervention to be helpful and acceptable. After incorporating modifications, ENABLE CHF-PC is currently undergoing efficacy testing in a large randomized controlled trial.

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Palliative Care for Family Caregivers

Journal of Clinical Oncology ◽

10.1200/jco.19.00018 ◽

2020 ◽

Vol 38 (9) ◽

pp. 926-936 ◽

Cited By ~ 5

Author(s):

Sorayya Alam ◽

Breffni Hannon ◽

Camilla Zimmermann

Keyword(s):

Risk Factors ◽

Palliative Care ◽

Family Caregivers ◽

Advanced Cancer ◽

Adverse Outcomes ◽

Family Risk Factors ◽

Family Risk ◽

Early Palliative Care ◽

Guide Care

Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient’s declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient’s death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver’s situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.

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The project ENABLE Cornerstone randomized pilot trial: Protocol for lay navigator-led early palliative care for African-American and rural advanced cancer family caregivers

Contemporary Clinical Trials Communications ◽

10.1016/j.conctc.2019.100485 ◽

2019 ◽

Vol 16 ◽

pp. 100485 ◽

Cited By ~ 1

Author(s):

Bailey A. Hendricks ◽

Corey Lofton ◽

Andres Azuero ◽

Matthew Kenny ◽

Richard A. Taylor ◽

...

Keyword(s):

Palliative Care ◽

African American ◽

Family Caregivers ◽

Advanced Cancer ◽

Pilot Trial ◽

Trial Protocol ◽

Cancer Family ◽

Early Palliative Care

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Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure

JAMA Network Open ◽

10.1001/jamanetworkopen.2020.2583 ◽

2020 ◽

Vol 3 (4) ◽

pp. e202583 ◽

Cited By ~ 2

Author(s):

J. Nicholas Dionne-Odom ◽

Deborah B. Ejem ◽

Rachel Wells ◽

Andres Azuero ◽

Macy L. Stockdill ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Family Caregivers ◽

Advanced Heart Failure ◽

Early Palliative Care ◽

Care Intervention

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Single early palliative care intervention added to usual oncology care for patients with advanced cancer: A randomized controlled trial (SENS Trial)

Palliative Medicine ◽

10.1177/02692163211005340 ◽

2021 ◽

pp. 026921632110053

Author(s):

Steffen Eychmüller ◽

Susanne Zwahlen ◽

Monica C Fliedner ◽

Peter Jüni ◽

Daniel M Aebersold ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Advanced Cancer ◽

Health Related Quality ◽

Early Palliative Care ◽

Care Intervention ◽

Related Quality ◽

Health Related ◽

Oncology Care

Background: International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life. Aims: To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment. Design: This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention. Setting/participants: One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy–General Questionnaire. Results: The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life. Conclusion: The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early.

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A Pilot Trial of Symptom Screening With Targeted Early Palliative Care (STEP) for Patients With Advanced Cancer

Case Medical Research ◽

10.31525/ct1-nct04044040 ◽

2019 ◽

Author(s):

Keyword(s):

Palliative Care ◽

Advanced Cancer ◽

Pilot Trial ◽

Early Palliative Care ◽

Symptom Screening

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Palliative Referrals in Advanced Cancer Patients: Utilizing the Supportive and Palliative Care Indicators Tool and Rothman Index

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211017873 ◽

2021 ◽

pp. 104990912110178

Author(s):

Abigail Sy Chan ◽

Amit Rout ◽

Christopher R. D.’Adamo ◽

Irina Lev ◽

Amy Yu ◽

...

Keyword(s):

Palliative Care ◽

Cancer Patients ◽

Advanced Cancer ◽

Length Of Hospital Stay ◽

Inpatient Setting ◽

Advanced Cancer Patients ◽

Care Needs ◽

Early Palliative Care ◽

Code Status ◽

Palliative Care Needs

Background: Timely identification of palliative care needs can reduce hospitalizations and improve quality of life. The Supportive & Palliative Care Indicators Tool (SPICT) identifies patients with advanced medical conditions who may need special care planning. The Rothman Index (RI) detects patients at high risk of acutely decompensating in the inpatient setting. SPICT and RI among cancer patients were utilized in this study to evaluate their potential roles in palliative care referrals. Methods: Advanced cancer patients admitted to an institution in Baltimore, Maryland in 2019 were retrospectively reviewed. Patient demographics, length of hospital stay (LOS), palliative care referrals, RI scores, and SPICT scores were obtained. Patients were divided into SPICT positive or negative and RI > 60 or RI < 60.Unpaired t-tests and chi-square tests were utilized to determine the associations between SPICT and RI and early palliative care needs and mortality. Results: 227 patients were included, with a mean age of 68 years, 63% Black, 59% female, with the majority having lung and GI malignancies. Sixty percent were SPICT +, 21% had RI < 60. SPICT + patients were more likely to have RI < 60 (p = 0.001). SPICT + and RI < 60 patients were more likely to have longer LOS, change in code status, more palliative/hospice referrals, and increased mortality (p <0.05). Conclusions: SPICT and RI are valuable tools in predicting mortality and palliative/hospice care referrals. These can also be utilized to initiate early palliative and goals of care discussions in patients with advanced cancer.

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