Randomized controlled trials have supported integrated oncology and palliative care (PC); however, optimal timing has not been evaluated. We investigated the effect of early versus delayed PC on ...quality of life (QOL), symptom impact, mood, 1-year survival, and resource use.
Between October 2010 and March 2013, 207 patients with advanced cancer at a National Cancer Institute cancer center, a Veterans Affairs Medical Center, and community outreach clinics were randomly assigned to receive an in-person PC consultation, structured PC telehealth nurse coaching sessions (once per week for six sessions), and monthly follow-up either early after enrollment or 3 months later. Outcomes were QOL, symptom impact, mood, 1-year survival, and resource use (hospital/intensive care unit days, emergency room visits, chemotherapy in last 14 days, and death location).
Overall patient-reported outcomes were not statistically significant after enrollment (QOL, P = .34; symptom impact, P = .09; mood, P = .33) or before death (QOL, P = .73; symptom impact, P = .30; mood, P = .82). Kaplan-Meier 1-year survival rates were 63% in the early group and 48% in the delayed group (difference, 15%; P = .038). Relative rates of early to delayed decedents' resource use were similar for hospital days (0.73; 95% CI, 0.41 to 1.27; P = .26), intensive care unit days (0.68; 95% CI, 0.23 to 2.02; P = .49), emergency room visits (0.73; 95% CI, 0.45 to 1.19; P = .21), chemotherapy in last 14 days (1.57; 95% CI, 0.37 to 6.7; P = .27), and home death (27 54% v 28 47%; P = .60).
Early-entry participants' patient-reported outcomes and resource use were not statistically different; however, their survival 1-year after enrollment was improved compared with those who began 3 months later. Understanding the complex mechanisms whereby PC may improve survival remains an important research priority.
Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and ...an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course.
To determine the effect of early versus delayed initiation of a palliative care intervention for family caregivers (CGs) of patients with advanced cancer.
Between October 2010 and March 2013, CGs of ...patients with advanced cancer were randomly assigned to receive three structured weekly telephone coaching sessions, monthly follow-up, and a bereavement call either early after enrollment or 3 months later. CGs of patients with advanced cancer were recruited from a National Cancer Institute cancer center, a Veterans Administration Medical Center, and two community outreach clinics. Outcomes were quality of life (QOL), depression, and burden (objective, stress, and demand).
A total of 122 CGs (early, n = 61; delayed, n = 61) of 207 patients participated; average age was 60 years, and most were female (78.7%) and white (92.6%). Between-group differences in depression scores from enrollment to 3 months (before delayed group started intervention) favored the early group (mean difference, -3.4; SE, 1.5; d = -.32; P = .02). There were no differences in QOL (mean difference, -2; SE, 2.3; d = -.13; P = .39) or burden (objective: mean difference, 0.3; SE, .7; d = .09; P = .64; stress: mean difference, -.5; SE, .5; d = -.2; P = .29; demand: mean difference, 0; SE, .7; d = -.01; P = .97). In decedents' CGs, a terminal decline analysis indicated between-group differences favoring the early group for depression (mean difference, -3.8; SE, 1.5; d = -.39; P = .02) and stress burden (mean difference, -1.1; SE, .4; d = -.44; P = .01) but not for QOL (mean difference, -4.9; SE, 2.6; d = -.3; P = .07), objective burden (mean difference, -.6; SE, .6; d = -.18; P = .27), or demand burden (mean difference, -.7; SE, .6; d = -.23; P = .22).
Early-group CGs had lower depression scores at 3 months and lower depression and stress burden in the terminal decline analysis. Palliative care for CGs should be initiated as early as possible to maximize benefits.
Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, ...however, little is known about the caregiver's role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts.
Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach.
Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient's partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported "fair" or "poor" health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients' upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient's treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing "what if" scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers.
These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.
A substantial portion of the 1.3 million persons diagnosed annually with cancer receive neurotoxic chemotherapy that may produce distressful symptoms and changes in functional ability. However, ...little is known about the symptom experience and daily life effects of chemotherapy-induced peripheral neuropathy (CIPN).
To describe the CIPN symptom experience and the influence of symptoms on everyday life.
This was a qualitative, exploratory, interpretive, descriptive study with semistructured interviews. A purposive sample of 28 participants was recruited from a rural National Cancer Institute-designated comprehensive cancer center. Interviews were audiotaped, transcribed verbatim, and imported into Atlas.ti software. Content analysis and constant comparative method were used to analyze the data.
Participants represented diversity in age (46-81 years), cancer type, time since diagnosis (3-198 months), neuropathy severity, and neurotoxic chemotherapy agents received. Content analysis yielded a rich, thick description of CIPN symptoms and the influence of the symptoms on functional ability and everyday life. Further interpretive analysis provided a description of the symptom experience through an overarching metaphor, Background Noise, and four major themes: (a) Becoming Aware; (b) Learning New Lyrics; (c) Functional, Emotional, and Social Role Cacophony; and (d) Learning to Live With It. Participants described significant physical limitations, emotional distress, and social role impairments due to CIPN.
Having CIPN results in diverse symptom patterns and degrees of physical symptom distress from mild to severe, emotional distress, alterations in functional ability, and social role impairment. Comprehensive clinical and research measures are needed to assess the full spectrum of CIPN effects on everyday life.
National guidelines recommend early palliative care for patients with advanced heart failure, which disproportionately affects rural and minority populations.
To determine the effect of an early ...palliative care telehealth intervention over 16 weeks on the quality of life, mood, global health, pain, and resource use of patients with advanced heart failure.
A single-blind, intervention vs usual care randomized clinical trial was conducted from October 1, 2015, to May 31, 2019, among 415 patients 50 years or older with New York Heart Association class III or IV heart failure or American College of Cardiology stage C or D heart failure at a large Southeastern US academic tertiary medical center and a Veterans Affairs medical center serving high proportions of rural dwellers and African American individuals.
The ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers) intervention comprises an in-person palliative care consultation and 6 weekly nurse-coach telephonic sessions (20-40 minutes) and monthly follow-up for 48 weeks.
Primary outcomes were quality of life (as measured by the Kansas City Cardiomyopathy Questionnaire KCCQ: score range, 0-100; higher scores indicate better perceived health status and clinical summary scores ≥50 are considered "fairly good" quality of life; and the Functional Assessment of Chronic Illness Therapy-Palliative-14 FACIT-Pal-14: score range, 0-56; higher scores indicate better quality of life) and mood (as measured by the Hospital Anxiety and Depression Scale HADS) over 16 weeks. Secondary outcomes were global health (Patient Reported Outcome Measurement System Global Health), pain (Patient Reported Outcome Measurement System Pain Intensity and Interference), and resource use (hospital days and emergency department visits).
Of 415 participants (221 men; baseline mean SD age, 63.8 8.5 years) randomized to ENABLE CHF-PC (n = 208) or usual care (n = 207), 226 (54.5%) were African American, 108 (26.0%) lived in a rural area, and 190 (45.8%) had a high-school education or less, and a mean (SD) baseline KCCQ score of 52.6 (21.0). At week 16, the mean (SE) KCCQ score improved 3.9 (1.3) points in the intervention group vs 2.3 (1.2) in the usual care group (difference, 1.6; SE, 1.7; d = 0.07 95% CI, -0.09 to 0.24) and the mean (SE) FACIT-Pal-14 score improved 1.4 (0.6) points in the intervention group vs 0.2 (0.5) points in the usual care group (difference, 1.2; SE, 0.8; d = 0.12 95% CI, -0.03 to 0.28). There were no relevant between-group differences in mood (HADS-anxiety, d = -0.02 95% CI, -0.20 to 0.16; HADS-depression, d = -0.09 95% CI, -0.24 to 0.06).
This randomized clinical trial with a majority African American sample and baseline good quality of life did not demonstrate improved quality of life or mood with a 16-week early palliative care telehealth intervention. However, pain intensity and interference (secondary outcomes) demonstrated a clinically important improvement.
ClinicalTrials.gov Identifier: NCT02505425.
In 2001, as the Trish Greene Quality of Life lecturer, I described coming to a career crossroads and cited a metaphor from Robert Frost's poem "The Road Not Taken," realizing that, as I chose to ...leave the path of bone marrow transplantation clinician and go to that of palliative care nurse, there was no turning back. In this article based on my 2016 Oncology Nursing Society Congress Distinguished Nurse Researcher Award lecture, I would like to continue the Frost metaphor as I describe what has transpired since taking "the one less traveled by"-that of palliative care nurse scientist.
Rural older adult Americans receive more intense treatment at end of life. Studies indicate that those who participate in goals of care conversations receive care more concordant with their values. ...Yet, rates of documented goals of care discussions are lower in rural and Black communities. Although multi-factorial, the role that rural family caregivers (FCGs) play in decision-making for ill loved ones is understudied.
This study aimed to explore rural FCGs cultural values, beliefs, and attitudes about serious illness and treatment decision-making and to understand how these factors influence their decision-making around goals of care for their family members.
This is an embedded qualitative study within a tele-palliative care consult randomized trial that the PEN-3 theoretical model guided. Semi-structured interviews were conducted with FCGs who had completed study participation. Thematic analysis was used to analyze the data.
Twelve rural FCGs center their decisions around core values, and the decision-making experience was supported by faith. A model of how the key themes and subthemes interact around the central space of supporting the seriously ill loved to demonstrate the complexity of caregiving when race and rurality intersect is presented.
This study is a foundational step in understanding how rural FCGs beliefs and values influence decision-making. We recommend incorporating those constructs into the development of culturally responsive decision-support interventions.
Life-Space mobility and clinical outcomes in COPD Iyer, Anand S; Wells, James M; Bhatt, Surya P ...
International journal of chronic obstructive pulmonary disease,
01/2018, Letnik:
13
Journal Article
Recenzirano
Odprti dostop
Social isolation is a common experience in patients with COPD but is not captured by existing patient-reported outcomes, and its association with clinical outcomes is unknown.
We prospectively ...enrolled adults with stable COPD who completed the University of Alabama at Birmingham Life Space Assessment (LSA) (range: 0-120, restricted Life-Space mobility: ≤60 and a marker of social isolation in older adults); six-minute walk test (6MWT), and the University of California at San Diego Shortness of Breath Questionnaire, COPD Assessment Test, and Hospital Anxiety and Depression Scale. The occurrence of severe exacerbations (emergency room visit or hospitalization) was recorded by review of the electronic record up to 1 year after enrollment. We determined associations between Life-Space mobility and clinical outcomes using regression analyses.
Fifty subjects had a mean ± SD %-predicted FEV
of 42.9±15.5, and 23 (46%) had restricted Life-Space mobility. After adjusting for age, gender, %-predicted FEV
, comorbidity count, inhaled corticosteroid/long-acting beta
-agonist use, and prior cardiopulmonary rehabilitation, subjects with restricted Life-Space had an increased risk for severe exacerbations (adjusted incidence rate ratio 4.65, 95% CI 1.19-18.23,
=0.03). LSA scores were associated with 6MWD (
=0.50,
<0.001), dyspnea (
=-0.58,
<0.001), quality of life (
=-0.34,
=0.02), and depressive symptoms (
=-0.39,
=0.005).
Restricted Life-Space mobility predicts severe exacerbations and is associated with reduced exercise tolerance, more severe dyspnea, reduced quality of life, and greater depressive symptoms.
Guidelines recommend early specialty palliative care for all patients with advanced cancer, but most patients lack access to such services.
To assess the effect of CONNECT (Care Management by ...Oncology Nurses to Address Supportive Care Needs), a primary palliative care intervention delivered by oncology nurses, on patient outcomes.
This cluster randomized clinical trial of the CONNECT intervention vs standard care was conducted from July 25, 2016, to October 6, 2020. Participants were adult patients with metastatic solid tumors who were undergoing oncological care and for whom an oncologist would agree with the statement "would not be surprised if the patient died in the next year." The trial was conducted at 17 community oncology practices in western Pennsylvania. Data analyses adhered to the intention-to-treat principle.
The CONNECT intervention included 3 monthly visits with an existing infusion room nurse who was trained to address symptoms, provide emotional support, engage in advance care planning, and coordinate care.
The primary outcome was quality of life. At baseline and 3 months, participants completed assessments of quality of life (Functional Assessment of Chronic Illness Therapy-Palliative care: score range, 0-184, with higher scores indicating better quality of life), symptom burden (Edmonton Symptom Assessment Scale: score range, 0-90, with higher scores indicating greater symptom burden), and mood symptoms (Hospital Anxiety and Depression Scale HADS: score range, 0-21, with higher scores indicating substantial anxiety and depression). Linear mixed-effects models were used to estimate adjusted mean differences in 3-month outcomes. Preplanned, intensity-adjusted analyses were conducted.
A total of 672 patients were enrolled (mean SD age, 69.3 10.2 years; 360 women 53.6%). The mean (SD) number of CONNECT visits completed was 2.2 (1.0). At 3 months, no difference in mean (SD) quality-of-life score was found between the CONNECT and standard care groups (130.7 28.2 vs 134.1 28.1; adjusted mean difference, 1.20; 95% CI, -2.75 to 5.15; P = .55). Similarly, there was no difference between groups in 3-month mean (SD) symptom burden (23.2 16.6 vs 24.0 16.1; adjusted mean difference, -2.64; 95% CI, -5.85 to 0.58; P = .11) or mood symptoms (HADS depression subscale score: 5.1 3.4 vs 4.8 3.7, adjusted mean difference, -0.08 95% CI, -0.71 to 0.57, P = .82; HADS anxiety subscale score: 5.7 3.9 vs 5.4 4.2, adjusted mean difference, -0.31 95% CI, -0.96 to 0.33, P = .34). Intensity-adjusted analyses revealed a larger estimated treatment effect for patients who received a full dose (3 visits) of the CONNECT intervention.
This cluster randomized clinical trial found that a primary palliative care intervention that was delivered by oncology nurses did not improve patient-reported outcomes at 3 months. Primary palliative care interventions with a higher dose intensity may be beneficial for most patients with advanced cancer who lack access to palliative care specialists.
ClinicalTrials.gov Identifier: NCT02712229.
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