Genesis of Quality Measurements to Improve the Care Delivered to Patients With Brain Metastases

2020 ◽  
pp. OP.20.00233
Author(s):  
Julio Silvestre ◽  
Tracey Gosse ◽  
Paul Read ◽  
Ryan Gentzler ◽  
Benjamin Purow ◽  
...  

PURPOSE: High-value and high-quality health care requires outcome measurements to inform treatment decisions, but, to our knowledge, no standardized measurements exist to evaluate brain metastases (BMs) care. We propose a set of measurements and report on their implementation in the care of patients with BMs. METHODS: On the basis of a stakeholders’ needs assessment and review of the literature, we identified outcome and process measurements to assess the care of patients with BMs according to treatment modality. Retrospectively, we applied these indicators of care to all patients diagnosed and treated at our institution over 2 years. RESULTS: We ascertained 5 outcome and 6 process measurements of relevance in the care of BMs. When applied to 209 patients (89.7%) who received cancer treatment, 77% were alive > 90 days after diagnosis. The proportion alive at 90 days after surgery, whole-brain radiation therapy (WBRT), and stereotactic radiosurgery (SRS) was 82%, 59%, and 81%, respectively. Other performance measurements included 30-day postoperative readmission rate (6%), SRS within 30 days of surgery (79%), use of memantine with WBRT (41%), advance directives within 6 months of diagnosis (53%), and palliative care consultation for patients with poor prognosis or receiving WBRT (45%). Measurements for the 24 patients (10.3%) receiving best supportive care were advance directives documentation (67%) and referral to palliative or hospice care (83%). CONCLUSION: We propose a set of measurements to apprise quality improvement efforts, inform treatment decision-making, and to use in evaluation of the performance of interdisciplinary BMs programs. Their refinement can potentially enhance the quality and value of care delivered to patients with BMs.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 7016-7016
Author(s):  
Dawn Maze ◽  
Roland B. Walter ◽  
Diana M. Merino ◽  
Timothy J. Bell ◽  
Louise O'Hara ◽  
...  

7016 Background: AML patients may be treated with intensive chemotherapy (IC), or non-intensive chemotherapy (NIC) or they may receive best supportive care (BSC) or hospice care. Balancing treatment efficacy and toxicities is key in treatment decision-making. IC is efficacious with extensive toxicities, while NIC has lower risk of toxicities but reduced efficacy. This study provides an international, multi-stakeholder perspective on the role of side effects in AML treatment decision-making. Methods: We conducted one-on-one, 60-minute interviews with 28 AML patients (>65 years, not receiving IC), 25 of their family members and 10 independent physicians from the US, UK and Canada. Interviews included open-ended questions to explore the treatment decision-making process. Participants also rated the importance of various factors in AML treatment decision-making from 0 (not important) to 3 (very important). Results: The sample included patients with varying treatment histories (13 no treatment, 11 on NIC, 3 discontinued NIC, 1 BSC). Side effects were rated as a ‘very important’ factor in treatment decision-making by a greater proportion of patients not on treatment (n = 9/13; 69.2%) and their relatives (n = 12/13; 92.3%) compared to those with experience of NIC (n = 5/11 who answered, 45.5%), their relatives (n = 3/11; 27.3%), and physicians (n = 4/10; 40.0%). When discussing side effects in detail, there was a disconnect between perceptions of patients not on treatment, and side effects that patients on NIC actually experienced. Many patients with no treatment experience were worried that side effects would be worse than their current symptoms (n = 6/13), referring to constant vomiting, hair loss, organ failure, or death. Fear of side effects was the primary reason for opting not to take treatment (n = 9/13), though it was not clear if these patients were distinguishing between IC and NIC. In contrast, although two patients’ experiences of side effects resulted in them discontinuing NIC (n = 2/14), a higher proportion (n = 9/14) reported that the side effects had little impact on their life. Side effects most frequently reported by patients with experience of NIC (n = 11/14) were considered mild and included fatigue, reduced appetite, generally feeling unwell, nausea and injection site irritation (all n = 3). It was most commonly reported that the worst aspect of NIC was the time commitment (n = 4/8 asked). When accounting for different treatments paths no international variation in findings was observed. Conclusions: The nature and severity of side effects of AML treatment were perceived to be worse than reality. This incorrect perception may lead to undertreatment of patients and result in worse outcomes. There is a need for more patient education and resources about the lived treatment experience, to enhance understanding and mitigate pre-conceived notions of side effects.


2019 ◽  
Vol 17 (3.5) ◽  
pp. HSR19-089
Author(s):  
Sara Hayes ◽  
Brian M. Green ◽  
Shayna Yeates ◽  
Amrita Bhowmick ◽  
Kaitlyn McNamara ◽  
...  

Background: Despite NCCN Guidelines and clear definition of palliative care, patients often carry misperceptions about palliative care and how it can be beneficially integrated into a patient’s care plan. In order to better understand the misinformation about palliative and hospice care, this study aims to assess patient-healthcare provider (HCP) communication regarding treatment decisions. Methods: An online survey was conducted with individuals who have had a diagnosis of cancer (n=1,517) to better understand their healthcare experiences as well as the impact their cancer diagnosis had on their quality of life. Measures included agreement scale questions assessing patient information needs surrounding treatment decision making. Open-ended questions where respondents were prompted to provide a written response allowed researchers to further assess patients’ understanding of palliative and hospice care. Responses to agreement-scale questions were evaluated using descriptive statistics. Openended question responses were analyzed using Dedoose qualitative data analysis software. Results: Among patients with a diagnosis of cancer, there were a broad range of patient misperceptions regarding palliative care, hospice care, and how they are used in cancer care. The majority of respondents (81%) stated that their HCP played a role when deciding on their treatment plan. Despite this, only 46% were confident they knew about the treatment’s impact on their daily life, 56% were confident they knew about the potential side effects of treatment, and 57% felt they had all of the information they needed. Themes identified through qualitative analysis include: patient conflation of palliative and hospice care, belief that palliative and hospice care are only relevant to end-of-life decision-making, and uncertainty about whether quality of life can actually be improved. Conclusions: Institutions and HCPs are recommended to integrate palliative care into cancer care. However, as this research shows, oncology patients are often misinformed about the benefits of palliative care. This follows a parallel concern of patients making treatment decisions without optimal information. A potential factor behind this unmet need may be lack of effective communication between patient and HCP. Palliative care may be mentioned by the HCP, but not discussed with enough empathy or depth, leading to patient misunderstanding and lack of inclusion in treatment plans.


2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi160-vi160
Author(s):  
Kristen Triebel ◽  
Kyler Maulhauser ◽  
John Fiveash ◽  
Dario Marrotta ◽  
Meredith Gammon ◽  
...  

Abstract OBJECTIVE To investigate medical decision-making capacity (MDC) in patients with advanced stage cancer. METHODS Participants were 113 newly diagnosed adults with brain metastases and 41 adults with metastatic cancer without brain metastases who were recruited from an academic medical center and 40 demographically-matched healthy controls recruited from the community. We evaluated MDC using the Capacity to Consent to Treatment Instrument (CCTI) Vignette B and its four clinically relevant consent standards (expressing a treatment choice, appreciation, reasoning, and understanding). Capacity impairment ratings (no impairment, mild/moderate impairment, and severe impairment) on the consent standards were also assigned to each participant using cutoff scores derived statistically from the performance of the control group. RESULTS Both of the metastatic cancer groups (with and without brain metastasis) performed significantly below controls on consent standards of understanding and reasoning. The brain metastasis group performed below the non-metastatic cancer group on understanding. Capacity compromise was defined as performance ≤1.5 standard deviations (SD) below the control group mean. Using this definition, approximately 65% of the participants with brain metastases and 51% of participants with metastatic cancer without brain metastases were impaired on at least one MDC standard. CONCLUSION Over half of participants with metastatic cancer regardless of whether they have brain disease have reduced capacity to make treatment decisions. The finding of impaired MDC in patients without brain metastases is surprising and suggests this group likely exhibits cognitive deficits that impact their ability to understand and reason about different treatment options. This finding suggests that clinicians need to carefully consider the patient’s ability to engage in treatment decision making when they are discussing treatment options for metastatic cancer. These results also indicate a need for the development and investigation of interventions to support MDC in this patient population.


2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 104-104
Author(s):  
Ajeet Gajra ◽  
Yolaine Jeune-Smith ◽  
Alexandrina Balanean

104 Background: Healthcare disparities are prevalent in cancer, with patients of color or ethnic minority (PCEM) at greatest risk for poor outcomes due to limited access to care, low health literacy and socioeconomic status, and potentially, racial anxiety and/or implicit bias (RA/IB) among oncologists. We conducted a descriptive study of medical/hematologic oncologists to assess perceptions of impact of RA/IB on treatment decisions and outcomes in PCEM. Methods: From February to April 2021, U.S.-based medical/hematologic oncologists participated in an online survey of perceptions regarding cancer care and outcomes in PCEM as part of a broader survey of various clinical and practice-related concerns. Questions used a modified 5-point Likert scale with an option of declining to answer, and respondents were aware that data would be anonymized and aggregated. Results: Among the 369 physicians surveyed, median years in practice were 17 (range 2-49). Most (72%) worked in community oncology; 64% were age 40 to 59 years; 21% identified as female, 70% as male, and 9% declined to disclose gender. Racial distribution was 32% White, 33% Asian, 7% Black, 4% Hispanic/Latinx, and 19% declined to disclose. Regarding perception of the degree of racial/ethnic healthcare disparity experienced by PCEM, 33% chose moderate, 29% very high/high, 29% low/none, and 8% declined to answer. Regarding how often RA/IB adversely affected survival among PCEM at their own practice, a majority (58%) chose rarely or never, 33% very often/almost always, often, or sometimes, and 9% declined to answer. Perceived frequency of specific scenarios involving RA/IB as adversely influencing treatment decisions at their practice (referral/recommendation for oncologic standard-of-care [SOC] modalities/services) was also assessed. The combinations of very often/almost always, often, and sometimes responses were: clinical trial referral (35%); palliative/hospice care (31%); novel therapeutic regimen vs. SOC selection (e.g., chemo/targeted/radiation therapy) (28%); surgical treatment recommendation (26%); and genetic/genomic testing referral (24%). Notably, 10% to 12% declined to answer. Conclusions: A majority of the medical/hematologic oncologists surveyed recognized the role of RA/IB in substandard treatment and outcomes among PCEM, but were less likely to perceive it within their own practice, suggesting a need for better identification. Notably, 24% to 35% recognized its adverse influence on SOC treatment decisions for PCEM. Further, 19% declined to identify their own race/ethnicity and 10% consistently declined to answer all treatment decision-making questions related to disparity, suggesting mistrust or apprehension in expressing true views. Findings suggest that oncologists may benefit from improved education regarding RA/IB and healthcare disparities in PCEM.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 7520-7520
Author(s):  
Thomas William LeBlanc ◽  
Roland B. Walter ◽  
Loriana Hernandez ◽  
Lucy Morgan ◽  
Timothy Bell ◽  
...  

7520 Background: Current treatment options for acute myeloid leukemia (AML) are diverse, including intensive chemotherapy (IC), low intensity therapy, best supportive care (BSC), and hospice care. Despite continued development of new therapies, recent data suggest that approximately 60% of older US patients remain untreated, but reasons for this are not well understood. By gathering insights from physicians, patients, and their family members, this study aims to better understand the factors that influence treatment decisions for adults with AML. Methods: Physicians in the US (n=4), UK (n=3) and Canada (n=3), and 15 US AML patient-family member dyads took part in one-on-one, 60-minute semi-structured interviews. Each participant rated a series of factors on a scale from 0 (not at all important) to 3 (very important) to determine their importance in treatment decision-making. Among the 15 adults with AML (>65 years, not taking IC) interviewed thus far, 13 had not received any treatment. Additional interviews are scheduled in the UK and Canada with patients having varied treatment experiences (data will be available for presentation). Results: To date, findings highlight the key role perceptions of side effects and patient health play in treatment decision making. A fear of treatment side effects was the primary reason patients (n=9/13) opted not to receive treatment. For the 2/15 study patients who had received treatment, side effects were considered the worst part of their treatment experience. Physicians also stated patients on BSC would be more willing to take low intensity treatments if risks (e.g., side effects) were minimized. Patients (n=11/15), their family members (n=11/15), and physicians (n=10/10) agreed that patients’ health (including age and comorbidities) influenced if treatment was pursued. Additionally, US physicians suggested that some patients have little desire to pursue treatment, with patients’ perception of low intensity therapy having poor efficacy and proximity of care influencing their choice for BSC or hospice care. Further analysis will explore other factors influencing patients’ treatment decisions and differences among patients who receive treatment versus those who do not. Conclusions: The treatment decision-making process for older adults with AML is complex and multifactorial. Understanding factors that influence treatment decisions is important if drug developers and prescribers are to ensure the availability of therapies that better align with individual patients’ needs.


1997 ◽  
Vol 13 (2) ◽  
pp. 5-8 ◽  
Author(s):  
Charles Waddell ◽  
Roger M. Clarnette ◽  
Michael Smith ◽  
Lynn Oldham

Advance directives theoretically enhance individual autonomy and facilitate treatment decision making at the end of life. There is little empirical evidence to support this, however. Based on a national postal survey of 2172 randomly selected medical practitioners (response rate 73%), this paper examines the effect advance medical directives have on (a) treatment prescribing for terminally ill people and (b) the degree of difficulty practitioners experience in making treatment choices. A hypothetical patient with Alzheimer's disease and an acute life-threatening illness was presented with and without an advance directive. With a directive, respondents were more uniform in their choice of treatment, with 86% choosing as the patient had requested. Difficulty with decision making was also less with the directive, 31% vs 45% with no directive. The data indicate that advance directives do affect practitioners’ treatment choices in favor of patient wishes and reduce the difficulty practitioners may experience in making them.


1997 ◽  
Vol 25 (2-3) ◽  
pp. 150-158 ◽  
Author(s):  
Elizabeth H. Bradley ◽  
Barbara B. Blechner ◽  
Leslie C. Walker ◽  
Terrie T. Wetle

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals (10 to 25 percent) have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use of advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act (PSDA) became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments.


2014 ◽  
Vol 222 (3) ◽  
pp. 165-170 ◽  
Author(s):  
Andrew L. Geers ◽  
Jason P. Rose ◽  
Stephanie L. Fowler ◽  
Jill A. Brown

Experiments have found that choosing between placebo analgesics can reduce pain more than being assigned a placebo analgesic. Because earlier research has shown prior experience moderates choice effects in other contexts, we tested whether prior experience with a pain stimulus moderates this placebo-choice association. Before a cold water pain task, participants were either told that an inert cream would reduce their pain or they were not told this information. Additionally, participants chose between one of two inert creams for the task or they were not given choice. Importantly, we also measured prior experience with cold water immersion. Individuals with prior cold water immersion experience tended to display greater placebo analgesia when given choice, whereas participants without this experience tended to display greater placebo analgesia without choice. Prior stimulus experience appears to moderate the effect of choice on placebo analgesia.


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