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The purpose of this study was to understand oncology clinicians' perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model.
This was a qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT.
Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: (1) treating the whole patient, (2) focusing on quality versus quantity of life, (3) “some patients just want to fight,” and (4) helping with transitions; timing is everything. Five themes comprised oncologists' views on the complementary role of palliative care: (1) “refer early and often,” (2) referral challenges: “Palliative” equals “hospice”; “Heme patients are different,” (3) palliative care as consultants or co-managers, (4) palliative care “shares the load,” and (5) ENABLE II facilitated palliative care integration.
Significance of results:
Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care.
Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients' quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden.
Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents' caregivers were asked to complete an after-death interview regarding the quality of care that the patient received.
There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that higher caregiver objective burden and stress burden were related to lower patient quality of life, higher symptom intensity, and higher depressed mood. Caregivers who perceived that patients had unmet needs at end of life reported higher objective burden, and those who perceived that patients were not treated with respect reported higher demand burden.
Significance of results:
The results indicate that a successful patient-focused intervention did not have a similar beneficial effect on caregiver burden. Future interventions should focus on caregivers as well as patients, with particular attention to caregivers' perceptions of patient care, and seek to change both negative and positive effects of informal caregiving.
There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.
Half of the participants recruited from our rural U.S. comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, quality of life, mood, and functional status were assessed every 3 months until death.
Baseline data of 279 participants were similar to normative samples. Solutions to methodological challenges of recruitment, missing data, and “usual care” control group contamination are described.
Significance of results:
It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.
Structural and functional neuroimaging techniques provide a unique opportunity to examine the neural basis for cognitive changes related to cancer and its treatment. While the link between cognitive dysfunction and central nervous system (CNS) cancers (e.g., primary brain tumors, primary CNS lymphoma, brain metastases of cancer in other organ systems, etc.) or non-CNS cancers treated with prophylactic whole-brain radiation seems clear, our understanding of the causes for cognitive changes following chemotherapy for other non-CNS cancers remains much more limited. Research using a variety of neuroimaging modalities has begun to delineate the brain mechanisms for cognitive changes related to cancer and chemotherapy, across a number of cancer subtypes. This chapter will briefly summarize the cognitive domains most likely to be affected following chemotherapy, review the available data relating cognitive performance and structural and functional neuroimaging changes in various cancer populations, and suggest avenues for future work in this area.
As clinical efficacy of cancer treatment has improved survivorship, increased awareness has arisen of issues critical to the functioning and quality of life of cancer survivors. Specifically, cognitive impairment related to cancer and its treatment, including radiation, chemotherapy, and hormone therapies, has been a topic of increasing study for 20 years. While more detailed discussion of cognitive studies of changes in function related to cancer treatment can be found elsewhere in this volume, these issues will be briefly summarized here, as they form a major component from which subsequent neuroimaging research has grown.
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