Family caregiver satisfaction with early palliative care for advanced non-small cell lung cancer (NSCLC)

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9027-9027
Author(s):  
J. Greer ◽  
W. Pirl ◽  
T. Lynch ◽  
J. Billings ◽  
V. Jackson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Palliative Care Team ◽  
Satisfaction With Care ◽  
Early Palliative Care ◽  
Caregiver Satisfaction ◽  
Care Services ◽  
Palliative Care Services ◽  
Oncology Care

9027 Background: Historically, there has been no established role for palliative care in treating ambulatory oncology patients who are not at the end of life, but still struggling with the physical, psychosocial and spiritual aspects of cancer. Integrating palliative care services earlier in oncology care may help alleviate the suffering of patients with advanced cancer and family caregivers. This single-arm pilot study examines caregiver satisfaction with early palliative care services in patients with advanced NSCLC. Methods: Sample included patients within 8 weeks of diagnosis of stage IIIb with effusions or IV NSCLC and their family caregivers. Patients met with the palliative care team at least monthly until the time of hospice referral or death, completing assessments of quality of life (FACT-L) and mood (HADS) at baseline, 3, and 6 months. Caregivers rated their satisfaction with palliative care services using the FAMCARE. To identify predictors of caregiver satisfaction with care, patient scores from the FACT-L and HADS were entered into a linear regression model. Results: Fifty-one patients were enrolled (31 female, mean age=64.5 years), with 73% (n=37) identifying a caregiver who consented to participate. Of the 32 caregivers who completed a follow-up assessment, 84% (n=27) reported average FAMCARE scores in the “very satisfied” to “satisfied” range. Patients with worse physical (β=−.49, p=.003) but better social wellbeing (β=.55, p=.001) on the FACT-L at baseline had caregivers who were more satisfied with palliative care services at follow-up. Patient mood symptoms on the HADS were not related to caregiver satisfaction with care. Conclusions: The majority of family caregivers reported being satisfied with oncology care that included early palliative care. Patients with greater physical disability had caregivers who were more satisfied with care, which may be due to increased contact with the palliative care team. Also, patients who felt more supported by their families at baseline had caregivers who were more satisfied with care. While these data are encouraging, controlled longitudinal studies are needed to determine if these findings are actually the result of early palliative care services. [Table: see text]

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care

2012 ◽  
Vol 30 (8) ◽  
pp. 880-887 ◽  
Author(s):  
Thomas J. Smith ◽  
Sarah Temin ◽  
Erin R. Alesi ◽  
Amy P. Abernethy ◽  
Tracy A. Balboni ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Clinical Oncology ◽  
Metastatic Cancer ◽  
Expert Consensus ◽  
Care Services ◽  
Palliative Care Services ◽  
Oncology Care ◽  
American Society

Purpose An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. Clinical Context Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. Recent Data Seven published RCTs form the basis of this PCO. Provisional Clinical Opinion Based on strong evidence from a phase III RCT, patients with metastatic non–small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE. ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.

Understanding the needs of family caregivers of older adults dying with dementia

2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Terminal Illness ◽  
English Language ◽  
Psychological Needs ◽  
Support Needs ◽  
Care Services ◽  
Unique Nature ◽  
Palliative Care Services ◽  
Services And Supports

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

Palliative Care—What, Who and When?

2011 ◽  
Vol 4 (11) ◽  
pp. 624-632
Author(s):  
Emma Cope ◽  
Patrick Daly
Keyword(s):  
Palliative Care ◽  
General Practice ◽  
Royal College ◽  
Palliative Care Team ◽  
Care Team ◽  
Ageing Population ◽  
Care Services ◽  
Specialist Services ◽  
Palliative Care Services

Palliative care is a speciality which has grown considerably in recent years gaining recognition as its own subspecialty of medicine by the Royal College of Physicians in 1987. GPs have always had a role in providing palliative care, and as our ageing population increases, the number of people living with incurable illnesses will continue to rise. This article aims to provide an understanding of palliative care medicine, the role of the GP in the palliative care team, guidance to help identify those patients who may benefit from palliative care services and when referral to specialist services may be needed. We have also highlighted key documents pertaining to palliative care applicable to general practice.

Caregiver satisfaction research using the FAMCARE questionnaire at the Palliative Care Services, Tata Memorial Centre.

2010 ◽  
Vol 28 (15_suppl) ◽  
pp. e19685-e19685
Author(s):  
B. Duraisamy ◽  
M. A. Muckaden ◽  
M. Dighe ◽  
S. Chandorkar ◽  
S. Dhumal ◽  
...  
Keyword(s):  
Palliative Care ◽  
Caregiver Satisfaction ◽  
Care Services ◽  
Palliative Care Services

Cluster-randomized trial of early palliative care for patients with metastatic cancer.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 9003-9003 ◽  
Author(s):  
Camilla Zimmermann ◽  
Nadia Swami ◽  
Gary Rodin ◽  
Ian Tannock ◽  
Monika K. Krzyzanowska ◽  
...  
Keyword(s):  
Palliative Care ◽  
Randomized Trial ◽  
Symptom Severity ◽  
Metastatic Cancer ◽  
Symptom Control ◽  
Cluster Randomized Trial ◽  
Satisfaction With Care ◽  
Early Palliative Care ◽  
Cluster Randomized

9003 Background: Patients with metastatic cancer have compromised quality of life (QOL), which tends to worsen towards the end of life. We conducted a cluster-randomized trial of early versus routine palliative care in patients with metastatic cancer, to assess impact on QOL, symptom control and satisfaction with care. Methods: Twenty-four medical oncology clinics were randomized, stratified by tumour site (4 lung clinics, 8 gastrointestinal, 4 genito-urinary, 6 breast, 2 gynecological), to intervention and follow-up (at least monthly) by a palliative care team, or to routine cancer care. Eligible patients had ECOG performance status 0-2 and a clinical prognosis of 6 months to 2 years. Patients completed measures of QOL (FACIT-Sp, including physical, social, emotional, functional and spiritual well-being; range 0-156, with higher scores indicating better QOL), symptom severity (Edmonton Symptom Assessment System; range 0-90, with higher scores indicating worse symptom severity), and satisfaction with care (FAMCARE-P16; score range 16-80) at baseline and monthly for 4 months. The primary outcome was the change in FACIT-Sp at 3 months. The planned sample size was 225 patients per arm, assuming 80% power and a 2-sided significance level of 0.05. Results: From December 2006 to September 2010, 461 patients completed baseline measures (228 intervention, 233 control); 442 patients completed at least one follow-up assessment (mean patients/cluster 18.8±11.6 control, 18.1±12.6 intervention). At 3 months, patients in the intervention group had marginally improved QOL (mean change in intervention vs. control, 1.6±14.5 vs. -2.0±13.6, p=0.07) but not symptom severity (0.1±16.9 vs. 2.1±13.9, p=0.34). At 4 months the change in QOL was more marked (2.5±15.5 vs. -4.0±14.2, p=0.008) and symptom severity was marginally better (-1.3±16.0 vs. 3.2±13.9, p=0.05). Improvement in satisfaction with care was evident at one month (p=0.001) and remained significant at both 3 months (2.3±9.1 vs.-1.8±8.2, p=0.001) and 4 months (3.7±8.6 vs. -2.4±8.3, p<0.001). Conclusions: In patients with metastatic cancer, early palliative care intervention immediately improved satisfaction with care, while QOL and symptom control improved later.

scholarly journals What do family caregivers know about palliative care? Results from a national survey

2019 ◽  
Vol 17 (6) ◽  
pp. 643-649 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Katherine A. Ornstein ◽  
Erin E. Kent
Keyword(s):  
Palliative Care ◽  
Chronic Illness ◽  
Family Caregivers ◽  
Hospice Care ◽  
Care Services ◽  
Palliative Care Services ◽  
Level Of Knowledge ◽  
National Trends ◽  
Behavioral Disability ◽  
Family Centered

AbstractObjectiveDespite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.MethodUsing the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).ResultMore than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”Significance of resultsOne-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

Effect of intervention on quality measures of symptom management in the Michigan Oncology Quality Consortium (MOQC).

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 70-70 ◽  
Author(s):  
Jeffrey B. Smerage ◽  
Katie Abstoss ◽  
Jane Severson ◽  
J. Cameron Muir ◽  
Claudia Jane Martin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Management ◽  
Lessons Learned ◽  
Care Services ◽  
Training Materials ◽  
Palliative Care Services ◽  
Oncology Care ◽  
Specific Care ◽  
Oncology Practice ◽  
Scale 8

70 Background: Michigan oncology practice groups that participated in MOQC [JOP 5(6):281, 2009] used the Quality Oncology Practice Initiative (QOPI) tool. Adherence to processes of disease specific care was high, but poor in domains associated with palliative care. These measures did not change over time [Health Affairs. 31(4):718, 2012]. These findings prompted us to test interventions to improve quality in palliative care domains. Methods: MOQC created a process, based on the IHI Framework for Spread, to assist oncology practice groups in establishing their own primary Palliative Care services, including the implementation of Edmonton Symptom Management Scale. 8 practice groups formed teams of local change agents to participate in the Palliative Care Demonstration (PC Demo) project. The teams participated in 3 in-person and 4 online learning sessions over 8 months, led by palliative care and quality experts. Teams were provided tools, training materials, and necessary support to implement the improvements and measure their success. The learning network facilitated the sharing of best practices and lessons learned throughout the process. The teams presented their results broadly to other MOQC participants at project conclusion. Results: Success was measured using palliative care-focused ASCO QOPI results. PC Demo sites consecutively improved their scores in many of the QOPI measures, and their rate of improvement from Fall 2011 to Spring 2012 was greater than that of their peers. Conclusions: We observed that collecting and distributing data in our consortium was insufficient to improve palliative oncology care. Providing practice groups with the appropriate infrastructure improved their capacity and capability to make the necessary changes to improve performance. [Table: see text]

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