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author:("akitas, Marie")
1.  Oncologists’ Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center 
Palliative & supportive care  2012;11(5):415-423.
Purpose
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.
Methods
Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT.
Results
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.
Conclusions
Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care.
doi:10.1017/S1478951512000673
PMCID: PMC3797174  PMID: 23040412
oncologist; oncology nurse practitioner; concurrent oncology palliative care; qualitative research; health care delivery
2.  Cancer Family Caregivers: A New Direction for Interventions 
Journal of Palliative Medicine  2012;15(7):775-783.
Abstract
Background
Descriptive studies of cancer family caregivers demonstrate role-related psychosocial and physical burden; however, little is known about which factors contribute to or obviate burden. Systematic reviews of caregiver intervention studies demonstrate mixed results, perhaps because some caregiver needs are still unknown and not adequately addressed. The purpose of our study was to explore the lived experience of being a caregiver for an adult with lung or colon cancer, so as to guide the development of future intervention studies.
Method
Using phenomenologic methods, open-ended interviews were conducted at a chemotherapy clinic, New Haven, CT with 135 caregivers to adults with lung or colon cancer. Interviews were audio-recorded and transcribed. Thematic analysis was conducted with transcripts coded, reviewed, and recoded multiple times. The final 69 codes were reduced to 13 code clusters (thematic categories) distributed among 4 themes.
Results
Four inter-related themes emerged: 1) becoming a caregiver; 2) new and altered relationships; 3) personal responses to caregiving and 4) antecedents and social context. Caregivers describe hearing the cancer diagnosis as “life-changing”. The cancer creates the context for the caregiver's relationships (with the patient, self, others, and the healthcare system), and cognitive, behavioral, affective, and spiritual responses. The caregiver's antecedent experiences and social support network form the foundation for their perceptions of the diagnosis, relationships, and personal responses.
Conclusion
This study implicates several intervention components to be developed and tested as favorably supporting caregivers, namely, reinforcing positive aspects of caregiving, cultivating open communication, and acknowledging the prior experiences and social foundation of the caregiver's life that can be supportive or burdensome.
doi:10.1089/jpm.2012.0046
PMCID: PMC3387766  PMID: 22612407
3.  The Project ENABLE II Randomized Controlled Trial to Improve Palliative Care for Rural Patients with Advanced Cancer: Baseline Findings, Methodological Challenges, and Solutions 
Palliative & supportive care  2009;7(1):75-86.
Background
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.
Methods
Half of the participants recruited from our rural, US 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 a bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, QOL, mood, and functional status were assessed every 3 months until death.
Results
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.
Conclusions
It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.
doi:10.1017/S1478951509000108
PMCID: PMC3685415  PMID: 19619377
Palliative Care; Randomized Controlled Trial; Advanced Cancer; Methodological Issues; Intervention Study; Rural
4.  The Project ENABLE II Randomized Controlled Trial to Improve Palliative Care for Patients with Advanced Cancer 
Context
There are few randomized controlled trials of the effectiveness of palliative care.
Objective
To determine the effect of a palliative care intervention on quality of life (QOL), symptom intensity, mood, and resource utilization.
Design, Setting, and Participants
Randomized controlled trial (November 2003-May 2008) of 322 patients with advanced cancer and an identified caregiver in a rural, NCI-designated comprehensive cancer center (the Norris Cotton Cancer Center, Lebanon, NH) and affiliated outreach clinics and Veteran’s Affairs Medical Center (White River Junction, VT).
Intervention
A multi-component, psycho-educational, palliative care intervention (Project ENABLE) conducted by an advanced practice nurse consisting of 4 weekly educational sessions and monthly follow-up until death or study completion.
Main Outcome Measures
(1) The Functional Assessment of Chronic Illness Therapy-Palliative (range: 0 to 184; higher scores indicate better QOL), (2) Edmonton Symptom Assessment Scale (range: 0 to 900; higher scores indicate greater symptom intensity), (3) Center for Epidemiological Studies-Depression (range: 0 to 60; higher scores indicate more depressive symptoms), completed at baseline, 1 month and every 3 months until death or study completion, (4) days in hospital, intensive care unit (ICU), and emergency department visits recorded in the medical record.
Results
322 participants with gastrointestinal (41%), lung (36%), genitourinary (12%), and breast (10%) cancer were randomized. Estimated treatment effects (intervention minus usual care) for all subjects were 4.6 (P = .02) for QOL, −27.8 (P = .06) for symptom intensity, and −1.8 (P = .02) for depressed mood. Estimated average treatment effects in the sample of participants who died during the study were 8.6 (P = .02) for QOL, −24.2 (P = .24) for symptom intensity, and −2.7 (P = .03) for depressed mood. Days in hospital, intensive care unit, and emergency department visits were not different between groups.
Conclusions
Compared to participants receiving usual oncology care, participants receiving a palliative care intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher QOL and mood; comparisons of symptom intensity and days in hospital, ICU, and emergency department visits were not statistically significant.
Trial Registration
clinicaltrials.gov Identifier: NCT00253383
doi:10.1001/jama.2009.1198
PMCID: PMC3657724  PMID: 19690306
5.  Patient Perspectives on Participation in the ENABLE II Randomized Controlled Trial of a Concurrent Oncology Palliative Care Intervention: Benefits and Burdens 
Palliative medicine  2012;27(4):375-383.
Background
ENABLE (Educate, Nurture, Advise Before Life Ends) II was one of the first randomized controlled trials (RCTs) examining the effects of a concurrent oncology palliative care intervention on quality of life, mood, and symptom control for advanced cancer patients and their caregivers. However, little is known about how participants experience early palliative care and the benefits and burdens of participating in a palliative care clinical trial.
Aim
To gain a deeper understanding of participants’ perspectives about the intervention and palliative care trial participation.
Design
A qualitative descriptive study using thematic analysis to determine benefits and burdens of a new palliative care intervention and trial participation.
Setting/Participants
Of the 72 participants who were alive when the study commenced, 53 agreed to complete an in-depth, semi-structured interview regarding the ENABLE II intervention and clinical trial participation.
Results
Participants’ perceptions of intervention benefits were represented by four themes: enhanced problem-solving skills, better coping, feeling empowered, and feeling supported or reassured. Three themes related to trial participation: helping future patients and contributing to science, gaining insight through completion of questionnaires, and trial/intervention aspects to improve.
Conclusions
The benefits of the intervention and the positive aspects of trial participation outweighed trial “burdens”. This study raises additional important questions relevant to future trial design and intervention development: when should a palliative care intervention be initiated and what aspects of self-care and healthy living should be offered in addition to palliative content for advanced cancer patients when they are feeling well?
doi:10.1177/0269216312445188
PMCID: PMC3657725  PMID: 22573470
Qualitative Study; Randomized Controlled Trial; Palliative Care; Intervention study
6.  Palliative Medicine and Decision Science: The Critical Need for a Shared Agenda To Foster Informed Patient Choice in Serious Illness 
Journal of Palliative Medicine  2011;14(10):1109-1116.
Abstract
Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. If patients lose capacity, then surrogate decision makers are cast into the decision-making role. The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families.
doi:10.1089/jpm.2011.0032
PMCID: PMC3236099  PMID: 21895453
7.  Impact on Caregiver Burden of a Patient-Focused Palliative Care Intervention for Patients with Advanced Cancer 
Palliative & supportive care  2010;8(4):395-404.
Objective
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.
Methods
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.
Results
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.
doi:10.1017/S1478951510000258
PMCID: PMC3063059  PMID: 20875202
caregiver burden; intervention; palliative care; cancer
8.  Developing Successful Models of Cancer Palliative Care Services 
Seminars in oncology nursing  2010;26(4):266-284.
Objectives
This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described.
Data Sources
Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed.
Conclusion
Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models.
Implications for nursing practice
Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer.
doi:10.1016/j.soncn.2010.08.006
PMCID: PMC2976669  PMID: 20971407
Cancer palliative care models; review; palliative care standards
9.  Reliability and Validity of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) Scale 
The Functional Assessment of Chronic Illness Therapy (FACIT) system provides a general, multidimensional measure of health-related quality of life (FACT-G) that can be augmented with disease or symptom-specific subscales. The 19-item palliative care subscale of the FACIT system has undergone little psychometric evaluation to date. The aim of this paper is to report the internal consistency, factor structure, and construct validity of the instrument using the palliative care subscale (FACIT-Pal). Two hundred fifty-six persons with advanced cancer in a randomized trial testing a palliative care psychoeducational intervention completed the 46-item FACIT-Pal at baseline. Internal consistency was greater than 0.74 for all subscales and the total score. Seventeen of the 19 palliative care subscale items loaded onto the four factor solution of the established core measure (FACT-G). As hypothesized, total scores were correlated with measures of symptom intensity (r = −0.73, P < 0.001) and depression (r = −0.75, P < 0.001). The FACIT-Pal was able to discriminate between participants who died within three months of completing the baseline and participants who lived for at least one year after completing the baseline assessment (t = −4.05, P <0.001). The functional well-being subscale discriminated between participants who had a Karnofsky performance score (KPS) of 70 and below and participants with a KPS score of 80 and above (t = 3.40, P <0.001). The findings support the internal consistency reliability and validity of the FACIT-Pal as a measure of health-related quality of life for persons with advanced cancer.
doi:10.1016/j.jpainsymman.2007.12.015
PMCID: PMC2746408  PMID: 18504093
Palliative care; quality of life; psychometrics
10.  Quality of Life of Long-Term Survivors of Breast Cancer and Lymphoma Treated With Standard-Dose Chemotherapy or Local Therapy 
Purpose
This study compared the quality of life (QOL) of long-term survivors of breast cancer and lymphoma who had been treated with standard-dose systemic chemotherapy or local therapy only.
Patients and Methods
Long-term survivors (mean, 10.0 ± 5.3 years after treatment) of breast cancer or lymphoma who had been treated with systemic chemotherapy (breast, n = 141, age = 57.0 ± 10.1 years; lymphoma, n = 66, age = 55.8 ± 13.5 years) or local therapy only (breast, n = 294, age = 65.8 ± 9.1 years; lymphoma, n = 37, age = 50.4 ± 12.8 years) were interviewed by phone using the Quality of Life–Cancer Survivors Tool.
Results
Multivariate analysis of covariance, controlling for sex, age, education, stage of disease, and time since last treatment, revealed that survivors who had been treated with systemic chemotherapy scored significantly lower on overall QOL compared with survivors treated with local therapy only (P = .04). Analysis of covariance on the subscale scores revealed that, compared with survivors who received local therapy, survivors treated with chemotherapy scored significantly lower on the Social subscale (P < .0001), but no differences emerged on the Psychological or Spiritual subscales. There was a statistically significant interaction between treatment and diagnosis (P = .01), as measured by the Physical subscale, indicating that lymphoma survivors treated with chemotherapy scored worse than all other groups.
Conclusion
Important QOL differences emerged between the chemotherapy and local therapy groups, suggesting that long-term QOL may vary depending on the type of treatment and diagnosis.
doi:10.1200/JCO.2005.03.343
PMCID: PMC1237110  PMID: 15994149

Results 1-10 (10)