Palliative Care Adapted to 'Real World' Community Settings

Roxanne Nelson, RN, BSN

November 26, 2018

SAN DIEGO — Palliative care can be successfully adapted to a community-based outpatient setting. The outcomes achieved may be superior to that of standard care, according to new findings presented here at the Palliative Care in Oncology Symposium (PCOS) 2018.

Patients who received palliative care had significant immediate improvements in three of the five quality-of-life (QOL) domains that were assessed at 1 month as compared to patients who received usual care. These improvements were sustained through 3 months (P < .01).

Most trials of outpatient palliative care for cancer patients have been conducted in specialized centers, and the degree to which the findings of these trials can be applied to "real world" settings is limited, explained lead author Huong Nguyen, PhD, RN, a research scientist from Kaiser Permanente, in Pasadena, California.

"As we all know, this is really the frontier of palliative care," he continued. "Despite the ASCO [American Society of Clinical Oncology] guidelines recommending integration of palliative care into oncology care, most of the evidence is based out of specialty cancer centers."

Nguyen told the audience that the motivation behind this research was inspired by the 2010 landmark study by Jennifer Temel, MD, and colleagues, which showed that introducing palliative care to regular therapy early after a diagnosis of metastatic non–small cell lung cancer (NSCLC) improved QOL and seemed to prolong survival.

"It really inspired and prompted our health systems leader to think about how we can implement such an intensive intervention in a community-based setting like Kaiser Permanente," she said.

Improvements in Most Domains

In their study, Nguyen and colleagues evaluated the effects of a nurse-led palliative care intervention for patients with stage II-IV NSCLC and their family caregivers in a community-based setting.

The study employed a sequential quasi-experimental design. A control phase was conducted from January 2015 to March 2016; that was followed by a 3-month period of adapting and refining the intervention. In phase 2 of the study, from June 2016 to March 2018, the intervention was tested at the City of Hope Cancer Center in Duarte, California.

The palliative care intervention began with a comprehensive assessment of the patient and family caregivers, as well as physical, psychological, social, and spiritual quality-of-life domains. Information from this assessment informed the development of a care plan through the interdisciplinary team conference. The care plan incorporated individualized education and telephone support for patients and family caregivers. "Our outcomes included these four dimensions of quality of life, as well as healthcare utilization and quality of end-of-life care," she said.

Nguyen emphasized that many of these facets of palliative care, such as patient assessment, the development of a care plan, and education, had already been incorporated into routine clinical care at their sites. However, these aspects of pallaitive care were largely unstructured in the usual-care approach. The researchers' intervention, by contrast, provided structure to these components.

The cohort included 102 patients and 122 caregivers. More than two thirds of patients (67.8%) had stage IV disease. Outcomes were measured at baseline, at 1 month, and at 3 months.

Patients in the intervention cohort experienced significant immediate improvements in three domains (physical, emotional, and functional well-being) of the five QOL domains that were assessed at 1 month. These improvements were sustained through 3 months vs usual care (P < .01).

Caregivers also showed improvements in physical (P = .04) and spiritual well-being (P = .03) and preparedness (P = .04) as compared to usual care.

There were no differences in distress or healthcare utilization between the cohorts.

"We did not see changes in social well-being," Nguyen noted, "and in terms of patients' spiritual well-being, there was also a little bit of trend for improvement here, but it wasn't statistically significant. "

High Attrition: Only 35% Patients Completed

The study had limitations, one of the most important being attrition during the study period. Only 35% of patients completed the 3-month follow-up in phase 2. The reasons for not completing the intervention included patients being too ill to continue, patients having died, or patients being unreachable. "This shows the challenges with conducting research with a seriously ill population," Nguyen emphasized.

In addition, the authors did not meet recruitment targets for patients in phase 2 and for caregivers during both phases. "It was quite challenging to enroll, recruit patients and caregivers, especially in the landscape of the new therapies for lung cancer and the perceived need for palliative care," he said. "And the 3-month follow-up time period was really too short to assess impact on long-term care utilization and quality of end-of-life care in this sample."

The team plans to assess long-term outcomes using electronic medical records, which will provide a more rigorous comparison of the impact of the intervention.

Addressing Challenges

In a discussion of the paper, Kristina B. Newport, MD, from Penn State Hershey Palliative Care, Philadelphia, noted that that "it's very challenging to translate some of the things that happen in the big specialized centers into the community setting, not the least of which is just simply paying for the interventions.

"Any intervention that we try in the community setting has to directly impact patient care and the bottom line," said Newport.

She pointed out that another challenge is that there is often only a short window of time for intervention. "So this really emphasizes that we have to get involved as soon as we can and to implement palliative care interventions early," Newport said. She commented on experiences within her own practice. "We see that patients who die within 6 months of their diagnosis have very high distress and very high needs, and it's a challenge sometimes to really proactively get involved in the time that we have with them."

Newport added that the "bottom line from this study is that a brief nurse-led palliative care intervention that...was developed in a specialized center can be translated to the community setting and can improve quality of life for both patients and caregivers."

The study was funded by the National Institute for Nursing Research. Dr Nguyen and Dr Newport have disclosed no relevant financial relationships.

Palliative Care in Oncology Symposium (PCOS) 2018. Abstract 17, presented November 16, 2018.


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