Benefits of Early Palliative Care to Informal Family Caregivers (DRAFT)

Author(s):  
Emily J. Martin ◽  
Eric J. Roeland

This chapter summarizes the Dionne-Odom et al. randomized controlled trial evaluating the benefits of an early, nurse-led palliative care intervention to caregivers of patients with advanced cancer. The study examined the impact of early (at diagnosis) versus delayed (12 weeks later) intervention on caregiver quality of life, depressed mood, and burden. The study showed that early intervention caregivers had lower depression scores at three months compared to the delayed group caregivers. Terminal decline analyses also showed lower depression and stress burden scores in the caregivers who received the early intervention. This chapter describes the basics of the study, including funding, year study began, year study was published, study location, who was studied, who was excluded, how many patients, study design, study intervention, follow-up, endpoints, results, and criticism and limitations. The chapter briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a clinical case.

Author(s):  
David Hui

This chapter discusses the Zimmermann trial, a large partially blinded, cluster randomized controlled trial of routine oncology care with or without early routine referral to palliative care. This landmark study found that early palliative care involvement was associated with improved quality of life, symptom burden and satisfaction among patients with advanced cancer. This chapter describes the basics of the study, including funding, year study began, year study was published, study location, who was studied, who was excluded, how many patients, study design, study intervention, follow-up, endpoints, results, and criticism and limitations. The chapter briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a relevant clinical case to illustrate some key points around palliative care referral.


2020 ◽  
Vol 10 (4) ◽  
pp. 395-403
Author(s):  
Silvia Tanzi ◽  
Francesco Venturelli ◽  
Stefano Luminari ◽  
Franco Domenico Merlo ◽  
Luca Braglia ◽  
...  

BackgroundEarly palliative care together with standard haematological care for advanced patients is needed worldwide. Little is known about its effect. The aim of the review is to synthesise the evidence on the impact of early palliative care on haematologic cancer patients’ quality of life and resource use.Patients and methodsA systematic review was conducted. The search terms were early palliative care or simultaneous or integrated or concurrent care and haematological or oncohaematological patients. The following databases were searched: PubMed, Embase, Cochrane, CINHAL and Scopus. Additional studies were identified through cross-checking the reference articles. Studies were in the English language, with no restriction for years. Two researchers independently reviewed the titles and abstracts, and one author assessed full articles for eligibility.ResultsA total of 296 studies titles were reviewed. Eight articles were included in the synthesis of the results, two controlled studies provided data on the comparative efficacy of PC interventions, and six one-arm studies were included. Since data pooling and meta-analysis were not possible, only a narrative synthesis of the study results was performed. The quality of the two included comparative studies was low overall. The quality of the six non-comparative studies was high overall, without the possibility of linking the observed results to the implemented interventions.ConclusionsStudies on early palliative care and patients with haematological cancer are scarce and have not been prospectively designed. More research on the specific population target, type and timing of palliative care intervention and standardisation of collected outcomes is required.PROSPERO registration numberCRD42020141322.


2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 138-138
Author(s):  
Breffni Hannon ◽  
Nadia Swami ◽  
Monika K. Krzyzanowska ◽  
Natasha B. Leighl ◽  
Amit M. Oza ◽  
...  

138 Background: Early palliative care referral is encouraged for patients with advanced cancer. However, little is known about patients’ perceptions of the impact and relevance of early referral. We conducted a qualitative study in which patients with advanced cancer were interviewed following completion of a randomized controlled trial comparing early palliative care with standard oncology care. Our aim was to delineate what, in the opinion of patients, were the respective roles of the oncology and palliative care teams in an outpatient setting. Methods: We conducted qualitative interviews with patients following completion of a cluster randomised controlled trial of early versus routine palliative care referral. Participants were recruited from 24 medical oncology clinics at a comprehensive cancer center. Selective sampling was employed to ensure equivalent numbers of participants from intervention vs. control arms, male vs. female, age ≥60 vs. <60 years, with high vs. low self-reported quality of life, and with high vs. low satisfaction with care. Forty-eight patients (26 intervention and 22 control) with advanced lung, breast, gynecological, gastrointestinal and genitourinary cancers completed interviews lasting 25 to 90 minutes. Control patients were asked about the role of oncology; intervention patients were asked about both teams. Interviews were recorded, transcribed and analysed using NVivo. A grounded theory approach was used to explore emerging themes. Results: Several themes emerged in relation to the contrast between oncology (OC) and palliative care (PC) including (1) the focus of the consultation, with OC tending to focus on cancer or treatment options while PC was regarded as being more holistic, including physical, psychological and family domains; (2) the model of care delivery, with OC described as being clinician-led and time-limited, in contrast with PC where time was more flexible and the patient set the agenda; and (3) the complementary nature of early palliative care alongside standard oncology care in terms of overall well-being. Conclusions: From a patient perspective, palliative care and medical oncology have distinct and complementary roles, supporting the relevance of early referral.


2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20639-e20639
Author(s):  
Breffni Hannon ◽  
Nadia Swami ◽  
Monika Krzyzanowska ◽  
Natasha B. Leighl ◽  
Amit M. Oza ◽  
...  

e20639 Background: Early palliative care referral is encouraged for patients with advanced cancer. However, little is known about patients’ perceptions of the impact and relevance of early referral. We conducted a qualitative study in which patients with advanced cancer were interviewed following completion of a randomized controlled trial comparing early palliative care with standard oncology care. Our aim was to delineate what, in the opinion of patients, were the respective roles of the oncology and palliative care teams in an outpatient setting. Methods: We conducted qualitative interviews with patients following completion of a cluster randomised controlled trial of early versus routine palliative care referral. Participants were recruited from 24 medical oncology clinics at a comprehensive cancer center. Selective sampling was employed to ensure equivalent numbers of participants from intervention vs. control arms, male vs. female, age ≥60 vs. <60 years, with high vs. low self-reported quality of life, and with high vs. low satisfaction with care. Forty-eight patients (26 intervention and 22 control) with advanced lung, breast, gynecological, gastrointestinal and genitourinary cancers completed interviews lasting 25 to 90 minutes. Control patients were asked about the role of oncology; intervention patients were asked about both teams. Interviews were recorded, transcribed and analysed using NVivo. A grounded theory approach was used to explore emerging themes. Results: Several themes emerged in relation to the contrast between oncology (OC) and palliative care (PC) including (1) the focus of the consultation, with OC tending to focus on cancer or treatment options while PC was regarded as being more holistic, including physical, psychological and family domains; (2) the model of care delivery, with OC described as being clinician-led and time-limited, in contrast with PC where time was more flexible and the patient set the agenda; and (3) the complementary nature of early palliative care alongside standard oncology care in terms of overall well-being. Conclusions: From a patient perspective, palliative care and medical oncology have distinct and complementary roles, supporting the relevance of early referral.


2020 ◽  
Vol 38 (4_suppl) ◽  
pp. TPS777-TPS777
Author(s):  
Stephanie Lelond ◽  
Harvey Chochinov ◽  
Paul Joseph Daeninck ◽  
Benjamin Adam Goldenberg ◽  
Lisa Lix ◽  
...  

TPS777 Background: Pancreatic cancer is lethal. Chemotherapy can improve survival by months; however, many patients experience an overwhelming burden of cancer-associated symptoms and poor quality of life (QOL). Early palliative care (EPC) alongside standard oncologic care results in improved QOL and survival in patients with lung cancer. Although international guidelines recommend EPC for patients with advanced pancreatic cancer (PANC), the benefit is not known. Objectives: The primary objective is to test for change in QOL between baseline (BL) and 16 weeks (wk). Secondary objectives are to test for change between BL and 16 wk in (a) symptom control; and (b) depression and anxiety. Methods: This prospective case-crossover study of patients with PANC provides EPC plus standard oncologic care. Primary oncology clinics refer patients to an EPC team led by a palliative care physician and a clinical nurse specialist. BL questionnaires are completed prior to initial EPC assessment, then every 4 wk until wk 16. EPC visits are every 2 wk for the first month, every 4 wk until wk 16, and then as needed. QOL, symptom control, anxiety and depression are measured using the FACT-Hep tool, ESAS-r, HADS and PHQ-9, respectively. A generalized linear model will test for statistically significant change in scores between BL and 16 wk; chemotherapy (yes/no) is included as a confounding covariate; model fit will be assessed. A sample size of 20 patients provides 80% power after controlling for covariate effects. 40 patients will be enrolled to account for missing data. To date, 28 patients have enrolled and 17 have completed the intervention. Significance: The benefit of EPC for patients with PANC is not known, however, EPC is increasingly recognized internationally by patients and stakeholders as a critical intervention which may improve both QOL and satisfaction with care. The Canadian Partnership Against Cancer’s report on the patient experience states “the best possible patient experience means all people with cancer have equitable access to high-quality person-centered palliative care”. This study offers access to EPC and provides an environment in which the benefit of an integrated approach is evaluated.


2016 ◽  
Vol 10 (4) ◽  
pp. 310-315 ◽  
Author(s):  
Sofia C. Zambrano ◽  
Monica C. Fliedner ◽  
Steffen Eychmüller

2021 ◽  
pp. bmjspcare-2021-002893
Author(s):  
Kenneth Mah ◽  
Brittany Chow ◽  
Nadia Swami ◽  
Ashley Pope ◽  
Anne Rydall ◽  
...  

ObjectiveEarly palliative care (EPC) in the outpatient setting improves quality of life for patients with advanced cancer, but its impact on quality of dying and death (QODD) and on quality of life at the end of life (QOL-EOL) has not been examined. Our study investigated the impact of EPC on patients’ QODD and QOL-EOL and the moderating role of receiving inpatient or home palliative care.MethodBereaved family caregivers who had provided care for patients participating in a cluster-randomised trial of EPC completed a validated QODD scale and indicated whether patients had received additional home palliative care or care in an inpatient palliative care unit (PCU). We examined the effects of EPC, inpatient or home palliative care, and their interactions on the QODD total score and on QOL-EOL (last 7 days of life).ResultsA total of 157 caregivers participated. Receipt of EPC showed no association with QODD total score. However, when additional palliative care was included in the model, intervention patients demonstrated better QOL-EOL than controls (p=0.02). Further, the intervention by PCU interaction was significant (p=0.02): those receiving both EPC and palliative care in a PCU had better QOL-EOL than those receiving only palliative care in a PCU (mean difference=27.10, p=0.002) or only EPC (mean difference=20.59, p=0.02).ConclusionAlthough there was no association with QODD, EPC was associated with improved QOL-EOL, particularly for those who also received inpatient care in a PCU. This suggests a long-term benefit from early interdisciplinary palliative care on care throughout the illness.Trial registration numberClinicalTrials.gov Registry (#NCT01248624).


2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 157-157
Author(s):  
Breffni Hannon ◽  
Nadia Swami ◽  
Ashley Pope ◽  
Natasha B. Leighl ◽  
Monika K. Krzyzanowska ◽  
...  

157 Background: Early palliative care referral can improve quality of life and satisfaction with care, and is increasingly encouraged. However, little is known about patients’ and caregivers’ attitudes towards early referral. We conducted qualitative interviews seeking the opinions of advanced cancer patients (who had been randomized to an early palliative care intervention) and their caregivers, to determine whether they perceived a benefit, and if so in which domains. Methods: We recruited participants from medical oncology clinics at a comprehensive cancer centre, following completion of a randomized controlled trial comparing early palliative care referral with standard oncology care. Selective sampling was employed to ensure equivalent numbers of participants based on study arm, age, gender, high vs. low quality of life scores, and high vs. low satisfaction with care. A grounded theory approach was used to explore emerging themes. Results: Twenty-six patients and 14 caregivers completed interviews. Several benefits of early referral were noted. These included: prompt attention to symptom needs; timely, sensitive information about prognosis and end-of-life care options; and destigmatization of palliative care through routine referral. Although some participants did not feel they currently needed palliative care, they did feel comforted that early referral had provided them with a “safety net” that could quickly be put into place if they required future support. Conclusions: Early referral was perceived as useful in several domains, including immediate symptom control, and preparation for the future.


2016 ◽  
Vol 31 (1) ◽  
pp. 72-81 ◽  
Author(s):  
Breffni Hannon ◽  
Nadia Swami ◽  
Gary Rodin ◽  
Ashley Pope ◽  
Camilla Zimmermann

Background: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. Aim: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Design: Qualitative grounded theory study using individual interviews. Setting/participants: The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Results: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. Conclusion: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.


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