Effects of an Oncology Nurse-Led, Primary Palliative Care Intervention (CONNECT) on Illness Expectations Among Patients With Advanced Cancer

2021 ◽  
Author(s):  
Lauren E. Sigler ◽  
Andrew D. Althouse ◽  
Teresa H. Thomas ◽  
Robert M. Arnold ◽  
Douglas White ◽  
...  

PURPOSE: Patients with advanced cancer often have unrealistic expectations about prognosis and treatment. This study assessed the effect of an oncology nurse-led primary palliative care intervention on illness expectations among patients with advanced cancer. METHODS: This study is a secondary analysis of a cluster-randomized trial of primary palliative care conducted at 17 oncology clinics. Adult patients with advanced solid tumors for whom the oncologist would not be surprised if died within 1 year were enrolled. Monthly visits were designed to foster realistic illness expectations by eliciting patient concerns and goals for their medical care and empowering patients and families to engage in discussions with oncologists about treatment options and preferences. Baseline and 3-month questionnaires included questions about life expectancy, treatment intent, and terminal illness acknowledgment. Odds of realistic illness expectations at 3 months were adjusted for baseline responses, patient demographic and clinical characteristics, and intervention dose. RESULTS: Among 457 primarily White patients, there was little difference in realistic illness expectations at 3 months between intervention and standard care groups: 12.8% v 11.4% for life expectancy (adjusted odds ratio [aOR] = 1.15; 95% CI, 0.59 to 2.22; P = .684); 24.6% v 33.3% for treatment intent (aOR = 0.76; 95% CI, 0.44 to 1.27; P = .290); 53.6% v 44.7% for terminal illness acknowledgment (aOR = 1.28; 95% CI, 0.81 to 2.00; P = .288). Results did not differ when accounting for variation in clinic sites or intervention dose. CONCLUSION: Illness expectations are difficult to change among patients with advanced cancer. Additional work is needed to identify approaches within oncology practices that foster realistic illness expectations to improve patient decision making.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 22-22
Author(s):  
Amy W. An ◽  
Colin McHugh ◽  
Lauren Elizabeth Nicholls ◽  
Ronald M. Epstein ◽  
Mohamedtaki Abdulaziz Tejani

22 Background: Prognostic awareness, which incorporates understanding of treatment goals, curability, life-expectancy, and anticipated course of illness, is critical to informed decision-making. In this qualitative study, we explored how balanced framing is utilized during prognostic discussions in oncology office visits. Methods: We (2 oncologists, 3 palliative care physicians) performed a secondary analysis of transcripts of audio-recorded visits between oncologists, caregivers, and patients with advanced cancer obtained as part of a large NIH-funded study. Transcripts were from one study site and included a variety of oncologists, cancer sites, and levels of patient prognostic awareness, as defined by concordance with the oncologist. For analysis, we chose transcripts with some discussion relating to prognosis (eg. treatment goals, etc.). We met regularly to identify themes contributing to prognostic awareness. Differences were reconciled via group discussion. This process continued iteratively until saturation was achieved (n = 24). Results: Prognosis content was reviewed during discussion of treatment goals (n = 15), life-expectancy (n = 14), and future planning (n = 18). In 8 examples of balanced framing of treatment options, oncologists acknowledged the uncertain benefit of treatment and considered patient quality of life; in 7 that did not, oncologists presented treatment as default and emphasized positive outcomes. In 8 examples of balanced framing in estimating life-expectancy, oncologists presented patient-specific ranges and acknowledged exceptionally long and short survival possibilities; in 6 that did not, oncologists provided broad ranges or focused on unusually long survival. In 6 examples of balanced framing in future planning, oncologists acknowledged best supportive care as an alternative to treatment; of 12 that did not, only the next line in treatment or clinical trial was discussed. Conclusions: Although prior research suggests that balanced framing is uncommon, we have identified occasions in which it occurs and characterized how it can be accomplished in prognostic discussions. Further study is needed to better understand the effect of balanced framing on patient prognostic awareness.


Author(s):  
Yael Schenker ◽  
Andrew D. Althouse ◽  
Margaret Rosenzweig ◽  
Douglas B. White ◽  
Edward Chu ◽  
...  

2011 ◽  
Vol 9 (2) ◽  
pp. 181-189 ◽  
Author(s):  
Claire E. Johnson ◽  
Afaf Girgis ◽  
Christine L. Paul ◽  
David C. Currow

AbstractObjective:Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).Method:Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.Results:Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.Significance of results:Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.


2019 ◽  
Vol 33 (7) ◽  
pp. 783-792 ◽  
Author(s):  
Monica Fliedner ◽  
Sofia Zambrano ◽  
Jos MGA Schols ◽  
Marie Bakitas ◽  
Christa Lohrmann ◽  
...  

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.


2013 ◽  
Vol 21 (9) ◽  
pp. 2427-2435 ◽  
Author(s):  
Wadih Rhondali ◽  
Sriram Yennurajalingam ◽  
Gary Chisholm ◽  
Jeanette Ferrer ◽  
Sun Hyun Kim ◽  
...  

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