Difficult Treatment Decisions Research Articles

How adult children experience and cope with their parents’ diagnosis of multiple myeloma: A qualitative exploration

PurposeThe aim of this study was to understand and explore the caregiving experience of adult children of patients with multiple myeloma (MM) during diagnosis and initial treatment based in Chinese filial piety culture. MethodsA descriptive phenomenology study was conducted to investigate semi-structured interview responses from the adult children (N = 22) of MM patients within three months after diagnosis. Colaizzi's descriptive analysis framework was employed to analyze data. This study was reported following the COREQ checklist. ResultsFour themes and twelve subthemes were identified from the interviews. (1) Commitment to filial piety. Participants subconsciously fulfilled their commitment to filial piety by supporting their parents, obeying their wishes, providing emotional comfort, and protecting them from harm. (2) Experiencing multiple dilemmas. They faced challenges such as difficult treatment decisions, insufficient caregiving preparation, emotional distress, and role conflict. (3) Benefiting from setbacks. The caregiving experience allowed participants to cherish the present more and to establish a new view of life. (4) Adaptive coping. Family supports and self-adaptation are effective coping strategies to achieve their good psychosocial adaptation. ConclusionsOur study provides a culturally sensitive perspective on the caregiving experience of adult children of patients with MM. This study found that Chinese culture, especially filial piety culture, influenced the experiences and coping strategies of MM caregivers. Healthcare providers should focus on the challenges faced by adult children and develop various strategies to help them cushion the burden and adjust to caregiving roles, such as supportive care programs, meaning-centered psychotherapy, and family-centered medical communication interventions.

Trusting the Wisdom of Elders.

Empirical evidence shouldn't be the only guide in difficult treatment decisions.

Decisional conflict, caregiver mastery, and depression among Chinese parental caregivers of children with leukemia

BackgroundInformal caregivers of children with leukemia can be emotionally and psychiatrically vulnerable when facing difficult treatment decisions (e.g., chemotherapy, targeted therapy, radiation, transplantation). A common behavioral manifestation of decisional conflict is the verbalized expression of uncertainty about which medical treatment plan to take. The study aims to examine the associations between decisional conflict, mastery, and depressive symptoms among parental caregivers of children with leukemia in China. It explored the mediating role of mastery in the relationship.MethodsA cross-sectional survey design was adopted. A total of 386 parental caregivers were recruited, and 325 valid questionnaires remained. The mean age of caregivers was 37.7 years, and 61.5% caregivers were female. We used Question Format Decisional Conflict Scale to assess decisional conflict, Pearlin’s Mastery Scale to assess mastery, and Center for Epidemiological Studies Depression 10 to assess depressive symptoms. We used mediation analyses to test the mediating effect of mastery.ResultsThe total score of decisional conflict scale, along with its dimensions of uncertainty, support, and effective decision were found negatively associated with depressive symptoms. In contrast, the dimension of information and value were not significantly associated with depressive symptoms. Mediation analyses demonstrated the direct effects of overall decisional conflict and uncertainly were fully mediated by mastery, while the direct effect of support and effective decision were partially mediated.ConclusionsEfforts should be made to alleviate parental caregivers’ decisional conflict and enhance sense of mastery. Particular attention should be paid to the psycho-social support to relieve uncertainties and ineffectiveness in decision making.

Reconstruction of the upper gastrointestinal tract using intra-thoracic Roux-en-Y technique after caustic agent ingestion: a case report from Aleppo, Syria

BackgroundCaustic substance ingestion is a high-risk medical emergency associated with high mortality and morbidity. To date, there are several treatment options with no standard method of care.Case presentationWe report a case of a corrosive agent ingestion complicated with third-degree burns and severe stenosis of the esophagus and gastric outlet. After failure of conservative treatment, the patient underwent jejunostomy placement for nutritional support followed by transhiatal esophagectomy with gastric pull-up and intra-thoracic Roux-en-Y gastroenterostomy with good outcomes. The patient recovered from the procedure and has been tolerating oral intake very well with significant weight gain.ConclusionWe put a new technique for treating severe gastrointestinal injuries caused by corrosive agent ingestion that resulted in both esophageal and gastric outlet strictures. These rare complex cases requires difficult treatment decisions. We believe that this technique provides many benefits for such cases and might be a feasible alternative for colon interposition.

To Treat or Not to Treat? Dilemmas when Deciding on Antineoplastic Treatment in Patients With Far Advanced Cancers.

Patients with advanced cancers and their oncologists are often faced with difficult treatment decisions, especially when there are borderline situations of expected benefit or increased risk of complications. In this narrative review, we will explore the decision-making process for patients with advanced cancers and provide insights on how to approach this complex task, while didactically dividing the oncologist's assessments according to a mnemonic rule of the ABCDE of therapeutic decision-making. Part A (advanced cancer) recalls that the rule is to be used specifically for advanced cancers. Parts B (potential benefits) and C (clinical conditions and risks) represents the traditional risk vs benefit scale. In Part D, we discuss ways to identify and understand patients' desires, values, preferences, and beliefs. The prognostic estimation, from Part E, may function as an "adjust" for the antineoplastic treatment decision-making. Treatment decisions need to be conducted by skilled oncologists, in a patient-centered care, aiming to promote valuable oncology with lower rates of aggressive care.

Economic Evaluation Of Single-Tooth Replacement Using Fixed Dental Prosthesis Or Implant-Supported Single Crowns

Objectives: Dentists and patients are frequently confronted by a difficult treatment decision: should a missing tooth be replaced with a fixed dental prosthesis (FDP) or an implant- supported single crown (ISC)? Material and Methods: Forty seven ..

Communication with seriously ill patients - more than just breaking bad news

Communication with seriously ill patients - more than just breaking bad news Abstract. In the context of palliative care, specific communication strategies and techniques are needed to adequately meet the special challenges of the palliative care situation. Successful communication is characterized by criteria of patient-centeredness and can positively influence important parameters of patients, caregivers, and clinicians. These parameters include informed and shared decision making, a trustful relationship with the treatment team, improved knowledge and understanding of prognosis, improved treatment adherence and coping with difficult treatment decisions, and increased patient satisfaction and quality of life of patients and caregivers. Communication skills can be learned and reinforced in communication courses. The COMSKIL training program, which was developed for various professional groups in medical oncology care, defines five central components of a professional conversation (communication goals, communication strategies, communication techniques, process tasks, and cognitive assessments) and addresses basic skills as well as communicative challenges in the context of specific conversation occasions.

Treatment Decision-Making in Metastatic Prostate Cancer: Perceptions of Locus of Control Among Patient, Caregiver, and Physician Triads.

BackgroundMultiple treatments for metastatic prostate cancer have similar efficacy, leaving patients with complicated treatment choices. Shared decision-making can facilitate difficult treatment decisions, but the extent to which this is used for metastatic prostate cancer is unknown. We assessed patient, caregiver, and physician perceptions of decision locus of control (shared decision-making vs physician- or patient-directed decisions) and the degree of agreement between groups.MethodsTriads of patients, caregivers, and physicians completed surveys of decision-making practices after a clinic visit in which a decision occurred. To evaluate the degree of agreement for decision locus of control, we used the quadratic-weighted kappa coefficient (κ). We used relative frequencies to evaluate which knowledge learned and treatment factors were most strongly endorsed by patients as informing and influencing their treatment decision-making, respectively.ResultsFifty triads participated, with median patient age of 72 years. A majority of patients, caregivers, and physicians reported shared decision-making (66%, 56%, and 52%, respectively). Patients and physicians demonstrated minimal agreement about decision locus of control (44%, κ=0.35 [SD = 0.52]), but caregiver reports were not statistically significantly associated with physician and patient reports (38%, κ=0.23, [SD = 0.28]), p=0.055; 44%, κ=0.34 [SD = 1.98], p=0.14). Treatment efficacy was the most common patient-reported factor influencing treatment decisions (44%).ConclusionThis study characterized metastatic prostate cancer patients’, caregivers’, and physicians’ experiences and communication preferences for treatment decision-making. Patients and physicians had greater agreement in decision locus of control compared with caregivers, yet patient-physician agreement was minimal. Metastatic prostate cancer patients report being influenced by information about treatment efficacy and clear next steps, and a desire for patient-friendly language and an invitation to be as involved in decision making at their preferred level. Emphasizing these may increase agreement in decision locus of control between all participants in the decision-making process.

Do young adults see value in advance directives?

Many Americans avoid end-of-life care planning; only 26% have completed an advance directive (AD). An AD promotes end-of-life care with dignity allowing individuals to make end-of-life treatment and care decisions before they are unable to do so. Previous studies related to ADs are focused on older adults with serious illness or people with functional/mental disability. The objective of this survey is to better understand young adults' knowledge of and attitude toward ADs and their preferences for ADs related to treatment and care options. Methods. Participants include graduate students (n=25) attending a state university in New York State (NYS). Data were collected using two ADs (Five Wishes; Medical Orders for Life-Sustaining Treatment (MOLST)) and one survey questionnaire. Summary statistics and multivariate models will be used to address the study aims. Results. Preliminary results show the average age was 23 years, 72% were female, 48% White, and 44% Black. The majority of young adults hadn’t completed an AD; however, their attitude toward ADs was positive; the majority believe it is important to have an AD prepared at their current age; and they believe young adults would willing to fill out ADs. Young adults can make difficult treatment and care decisions when the situation requires it. Conclusion. The study findings can be useful to policy makers, healthcare providers and other stakeholders in promoting population-based healthcare decision-making. Limitation. Participants were recruited from one university in NYS; thus, the study results may be generalized to a population sharing similar characteristics.

P-OGC41 Survival after curative chemoradiotherapy or neoadjuvant therapy and surgery converges in higher-risk patients with oesophageal cancer

Abstract Background Both curative chemoradiotherapy (cCRT) and neoadjuvant chemoradiotherapy and surgery (nCRTS) can be considered as treatments for potentially curable oesophageal squamous cell carcinoma (OSCC). Whilst this equipoise does not exist in oesophageal adenocarcinoma (OAC), there are patients in whom treatment decisions are not straightforward, creating an overlapping group in which cCRT might be considered in preference to neoadjuvant chemotherapy or chemoradiotherapy and surgery (nC(R)TS). We aim to see how survival changes between unmatched and matched cohorts of patients with OAC and OSCC treated with cCRT or nC(R)TS, to reflect difficult multidisciplinary team treatment decisions. Methods Patients treated with nC(R)TS or cCRT for OSCC and OAC were identified on an intention-to-treat basis from April 2016 to April 2019, allowing a minimum 2-year follow up from diagnosis. Upper third tumours were excluded due to clear preference for cCRT. Preoperative variables were compared using descriptive statistics, with OSCC and OAC analysed separately. Significantly different variables were used to generate propensity scores. Cohorts were then matched and analysis repeated to assess cohort symmetry. Overall survival and 2-year survival were investigated using Kaplan-Meier survival curves and log-rank testing. Analysis was performed in R. Results 60 and 231 patients with OSCC and OAC were treated with cCRT or nC(R)TS. In the unmatched analysis, nC(R)TS had superior overall and 2-year survival, however there were significant differences in age, Charlson comorbidity index and cancer stage in OSCC and OAC cohorts, and in tumour site for the OAC cohort. After propensity score matching, differences in overall and 2-year survival reduced, though no results reached significance (OSCC: nCRTS 2y survival 58% vs 51% and 54% in unmatched and matched cCRT cohorts, respectively; OAC: cCRT 2y survival 51% vs 60% and 56% in unmatched and matched nC(R)TS cohorts, respectively). Conclusions These data suggest that as patient and cancer related factors increase the difficulty of treatment decisions, the survival benefit of surgery reduces in both OSCC and OAC. These results underline the need for randomised controlled trials using current treatment and staging strategies, as there have been considerable advances since original comparisons of neoadjuvant and curative chemoradiotherapy. This study is limited by relatively short follow up and unpowered sample sizes, however the coded nature of the analysis provides a structure for regular review of outcomes in our unit using routinely collected data, and could be easily applied more widely.

Abstract 11866: Cardiorespiratory Fitness and Mortality in Older Adults Age 60 to 90 Years

Introduction: With an aging population and advances in technology and surgical interventions, physicians are sometimes faced with difficult treatment decisions for older patients. Invasive treatment options may not be beneficial in older adults with limited survival. Chronological age alone does not fully reflect a patient’s prognosis and should not be the only factor used to guide treatment decisions. In this study, we assessed the association of cardiorespiratory fitness with all-cause mortality among adults age 60 to 90 years. Methods: This retrospective cohort study included patients age 60-90 years who underwent symptom-limited exercise treadmill testing at an integrated health system from 2011 to 2019. Patients were categorized into three age groups: 60-70 years, 70-80 years, and 80-90 years. Cardiovascular fitness was categorized into low fitness (<5 METs), moderate fitness (5-10 METs), and high fitness (>10 METs). Median follow-up was 3.5 years. Hazard ratios (HR) associated with exercise capacity were calculated using multivariable Cox regression models. Results: The study cohort included 40520 patients: 27021 (66.7%) age 60-70 years, 11638 (27.6%) age 70-80 years, and 1861 (4.6%) age 80-90 years. After treadmill testing, 3494 (8.6%) were categorized as low fitness, 21863 (54.0%) as moderate fitness, and 15163 (37.4%) as high fitness. Older age, female sex and presence of cardiovascular risk factors including hypertension, diabetes, and chronic kidney disease were associated with having low fitness. Low fitness and higher chronological age were independently associated with lower survival. Using the age 60-70 years group with high fitness as reference, the age 80-90 group with high fitness had better survival than their younger counterparts with low fitness (age 80-90 high fitness: HR 2.9, 95% CI 1.2-7.2; age 60-70 low fitness HR 4.3, 95% CI 3.1-5.9; age 70-80 low fitness HR 6.8, 95% CI 5.2-8.9). Conclusions: High cardiorespiratory fitness is a strong predictor of survival. When assessing a patient’s prognosis for long-term survival, chronological age alone should not be the only factor considered. Evaluation of cardiorespiratory fitness using treadmill testing may be useful for tailoring prognostic information.

Co-occurring depression and insomnia in Australian primary care: recent scientific evidence.

Depression and insomnia commonly co-occur, resulting in greater morbidity for patients, and difficult diagnostic and treatment decisions for clinicians. When patients report symptoms of both depression and insomnia, it is common for medical practitioners to conceptualise the insomnia as a secondary symptom of depression. This implies that there is little purpose in treating insomnia directly, and that management of depression will improve both the depression and insomnia symptoms. In this review, we present an overview of research investigating the comorbidity and treatment approaches for patients presenting with depression and insomnia in primary care. Evidence shows that clinicians should avoid routinely conceptualising insomnia as a secondary symptom of depression. This is because insomnia symptoms: (i) often occur before mood decline and are independently associated with increased risk of future depression; (ii) commonly remain unchanged following depression treatment; and (iii) predict relapse of depression after treatment for depression only. Furthermore, compared with control, cognitive behaviour therapy for insomnia improves symptoms of both depression and insomnia. It is critical that primary care clinicians dedicate specific diagnostic and treatment attention to the management of both depression (eg, psychotherapy, antidepressants) and insomnia (eg, cognitive behaviour therapy for insomnia administered by trained therapists or psychologists through a mental health treatment plan referral, by online programs, or by a general practitioner or nurse) when they co-occur. These treatments may be offered concurrently or sequentially (eg, insomnia treatment followed by depression treatment, or vice versa), depending on presenting symptoms, history, lifestyle factors and other comorbidities.

How to Tackle the Diagnosis and Treatment in the Diverse Scenarios of Extrapulmonary Sarcoidosis.

Extrapulmonary sarcoidosis occurs in 30–50% of cases of sarcoidosis, most often in association with pulmonary involvement, and virtually any organ can be involved. Its incidence depends according to the organs considered, clinical phenotype, and history of sarcoidosis, but also on epidemiological factors like age, sex, geographic ancestry, and socio-professional factors. The presentation, symptomatology, organ dysfunction, severity, and lethal risk vary from and to patient even at the level of the same organ. The presentation may be specific or not, and its occurrence is at variable times in the history of sarcoidosis from initial to delayed. There are schematically two types of presentation, one when pulmonary sarcoidosis is first discovered, the problem is then to detect extrapulmonary localizations and to assess their link with sarcoidosis, while the other presentation is when extrapulmonary manifestations are indicative of the disease with the need to promptly make the diagnosis of sarcoidosis. To improve diagnosis accuracy, extrapulmonary manifestations need to be known and a medical strategy is warranted to avoid both under- and over-diagnosis. An accurate estimation of impairment and risk linked to extrapulmonary sarcoidosis is essential to offer the best treatment. Most frequent extrapulmonary localizations are skin lesions, arthritis, uveitis, peripheral lymphadenopathy, and hepatic involvement. Potentially severe involvement may stem from the heart, nervous system, kidney, eye and larynx. There is a lack of randomized trials to support recommendations which are often derived from what is known for lung sarcoidosis and from the natural history of the disease at the level of the respective organ. The treatment needs to be holistic and personalized, taking into account not only extrapulmonary localizations but also lung involvement, parasarcoidosis syndrome if any, symptoms, quality of life, medical history, drugs contra-indications, and potential adverse events and patient preferences. The treatment is based on the use of anti-sarcoidosis drugs, on treatments related to organ dysfunction and supportive treatments. Multidisciplinary discussions and referral to sarcoidosis centers of excellence may be helpful for difficult diagnosis and treatment decisions.

Perceptions of Prognosis and Treatment Risk in Older Patients with Acute Myeloid Leukemia

Background: Older patients (>60 years) with acute myeloid leukemia (AML) face difficult treatment decisions as they can be treated either with risky multi-drug “intensive” chemotherapy for a small chance of a cure, or “non-intensive” and non-curative palliative chemotherapy. To make informed decisions about their treatment, patients must have a good understanding of their prognosis and overall risks of these treatment options. However, studies examining patients' understanding of their prognosis and treatment risk are lacking.Methods: We conducted a longitudinal study of older patients newly diagnosed with AML at two tertiary care hospitals. At enrollment, we assessed patients' and oncologists' perception of treatment-related mortality. At one month, we assessed patients' and oncologists' perception of prognosis using the Prognosis and Treatment Perception Questionnaire. We also examined whether patients discussed their end-of-life care wishes with their oncologist at 24 weeks. We generated descriptive statistics for all variables and stratified one-month patient data by chemotherapy type (intensive versus non-intensive). We compared patients' perceptions of prognosis and treatment-related mortality with their oncologists' perceptions using chi-square tests.Results: We enrolled consecutive patients within 72 hours of initiating intensive (n = 50) or non-intensive (n = 50) chemotherapy. The majority of patients reported that it is at least ‘somewhat’ likely to die due to treatment (91.3%, 84/92) while their oncologists reported that it is ‘very unlikely’ (80.0%; 74/92) for the patient to die due to their treatment (P < 0.001). Although most patients (95.06%, 77/88) reported it was ‘very important’ to know their prognosis, there were substantial discrepancies in their prognostic understanding. Most patients (90.0%, 73/81) reported that they were ‘somewhat’ or ‘very likely’ to be cured of their leukemia while most oncologists reported that it is ‘unlikely’ or ‘very unlikely’ for the patient to be cured (74% (60/81)) (P < 0.001). Patients receiving both intensive and non-intensive chemotherapy had significant misperceptions about their prognosis. Among patients receiving intensive chemotherapy, 97.6% reported that they are ‘somewhat’ or ‘very likely’ to be cured, while 58% of their oncologists reported that cure was unlikely (P < 0.001) [Figure 1]. Among patients receiving non-intensive chemotherapy, 82.1% reported that they are ‘somewhat’ or ‘very likely’ to be cured, while 90% of their oncologists reported that cure was unlikely (P < 0.001) [Figure 2]. Most patients (77.8%, 42/54) have not discussed their end-of-life care wishes with their oncologists 24 weeks after initiating therapy for AML.Conclusion: Older patients with AML have substantial misperceptions regarding the risks of their treatment and they overestimate the likelihood of cure, compared to their oncologists' estimates. Prognostic misperceptions are especially striking in patients receiving non-intensive chemotherapy. Despite the oncologists' assessment that their prognosis was poor, most older patients with AML did not report discussing their end-of-life care preferences with their oncologists 24 weeks after initiating therapy for their disease. These data underscore the critical gaps in communication and prognostic understanding in order patients with AML. Interventions are needed to improve communication with oncologists and to ensure older patients with AML have an accurate understanding of their treatment risks and prognosis to make informed decisions about their treatment. [Display omitted] DisclosuresFathi:Pfizer: Honoraria; Takeda: Research Funding; Medimmune: Consultancy, Membership on an entity's Board of Directors or advisory committees; Amgen: Consultancy, Membership on an entity's Board of Directors or advisory committees; Juno: Membership on an entity's Board of Directors or advisory committees; Seattle Genetics: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Celgene: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Agios: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees. Steensma:Novartis: Consultancy, Membership on an entity's Board of Directors or advisory committees; H3 Biosciences: Consultancy; Onconova: Consultancy; Incyte: Equity Ownership; Janssen: Consultancy, Research Funding; Celgene: Consultancy; Amgen: Consultancy, Membership on an entity's Board of Directors or advisory committees; Pfizer: Consultancy; Pfizer: Consultancy, Membership on an entity's Board of Directors or advisory committees; Takeda: Consultancy. LeBlanc:Helsinn Therapeutics: Consultancy, Honoraria; Janssen: Honoraria; Flatiron Health: Consultancy; AstraZeneca: Research Funding; Celgene: Honoraria; American Cancer Society: Research Funding; Seattle Genetics: Research Funding; Pfizer: Consultancy; Otsuka: Membership on an entity's Board of Directors or advisory committees; Cambia Health Foundation: Research Funding; Boehringer Ingelheim: Membership on an entity's Board of Directors or advisory committees. DeAngelo:Glycomimetics: Research Funding; Incyte: Consultancy, Honoraria; Celgene: Research Funding; Blueprint Medicines: Honoraria, Research Funding; ARIAD: Consultancy, Research Funding; Novartis Pharmaceuticals Corporation: Consultancy, Honoraria, Research Funding; Shire: Honoraria; Takeda Pharmaceuticals U.S.A., Inc.: Honoraria; BMS: Consultancy; Immunogen: Honoraria, Research Funding; Amgen: Consultancy, Research Funding; Pfizer Inc.: Consultancy, Honoraria, Research Funding. Stone:Novartis: Consultancy; Arog: Consultancy; Pfizer: Consultancy; Ono: Consultancy; Sumitomo: Consultancy; Celgene: Consultancy; Fuji Film: Consultancy; Agios: Consultancy; Amgen: Consultancy; Astellas: Consultancy; Jazz: Consultancy; Abbvie: Consultancy.

Assessing patient information and decision-support needs in problematic alcohol use and co-occurring depression to inform shared decision-making interventions.

The authors assessed the informational and decision-support needs of patients, families, and clinicians when deciding on treatment for problematic alcohol use and depression. Patients (n = 56), family members (n = 16), and clinicians (n = 65) with experience deciding on treatment for problematic alcohol use and depression were eligible. Participants completed an online decisional needs assessment survey. Stakeholder groups identified numerous difficult patient-level treatment decisions and elevated decisional conflict. Participants preferred patient-led or shared treatment decision-making (75%-95.4%). Patients (32.6%) reported not being as involved in treatment decision-making as preferred, a higher proportion than reported by clinicians (16.4%; p = .056). More patients (19.6%) than clinicians (3.6%) reported clinician-led treatment decision-making, with little or no patient involvement (p = .022). Stakeholder preferences for future decision-support resources included online information for use outside consultations.

A special kind of stress: Assessing feelings of decisional distress for breast cancer treatment decisions

ObjectiveWomen with breast cancer need to make difficult treatment decisions and may experience decisional distress (worry, anxiety, and thought intrusion) associated with these decisions. This study investigated ways that decisional distress was both associated with and distinct from other variables regarding decisional process and life functioning, and it investigated the validity of a decisional distress scale. MethodsA total of 263 women previously or currently diagnosed with breast cancer reported on initial treatment decisions regarding surgery, chemotherapy, or radiation, or decisions involving oral endocrine therapy (either currently or retrospectively). Participants completed online measures of decisional distress, alliance and confusion in patient-practitioner relationships, positive and negative interactions in close relationships, financial and general distress, and decision satisfaction. ResultsDecisional distress demonstrated a unidimensional factor structure invariant across treatment context groups, a wide range of meaningful variation, significant correlations with all hypothesized variables (especially patient confusion), but also key distinctions from other variables. ConclusionDecisional distress is a meaningful construct that can be assessed with precision, and important for understanding medical decision-making processes and patient quality of life. Practice implicationsAssessing decisional distress is crucial for evaluating treatment decision outcomes. One key to reducing decisional distress may involve reducing patient confusion.

Cytogenetic characteristics of and prognosis for acute myeloid leukemia in 107 children.

Patients diagnosed with acute myeloid leukemia (AML) in childhood have a poor prognosis. A better understanding of prognostic factors will assist patients and clinicians in making difficult treatment decisions. To understand further the cytogenetic characteristics of and reassess the prognostic value of cytogenetic abnormalities in childhood AML. Conventional karyotypes of 107 children with AML were analyzed retrospectively. The cases were divided into 4 groups based on genetic rearrangements; namely patients with: t(15;17)/PML-RARA; t(8;21)/RUNX1-RUNX1T1 or inv(16)(p13;q22) and t(16;16)/CBFB-MYH11; -7 or complex karyotypes; normal karyotypes or other cytogenetic changes. Differences in age, sex, leukocyte count, event-free survival (EFS), and overall survival (OS) were analyzed. All French-American-British (FAB) subtypes of AML were detected in 107 patients. We successfully cultured 81 of 107 bone marrow specimens, of which 60 cases had abnormal karyotypes. The most common abnormal karyotypes were t(8;21) (17/81 cases), followed by t(15;17) (13/81 cases), -X/Y (10/81 cases). There were no significant differences (P > 0.05) in age, sex, or leukocyte counts between the 4 groups. The differences in 3-year EFS and OS between each pair were significant, except for groups of patients with t(8;21)/RUNX1-RUNX1T1 and patients with normal karyotypes or other cytogenetic changes (P = 0.054). Chromosomal abnormalities may provide important prognostic factors for AML in children and be helpful for risk stratification and individual treatment.

P0461 / #1875: ETHICAL SUPPORT TO PICU DURING THE COVID-19 PANDEMIC

Aims & Objectives: The Tsunami of COVID-19 ethical guidance has led clinicians to feel as if they were drinking water from a hosepipe on full blast! However, to be useful, ethics should be a practical, not a guideline discipline - we describe the support provided by a Paediatric Bioethics Centre team (PBC) to PICU during the pandemic. Methods: GOSH-PBC is a multidisciplinary group: laypeople – including former hospital parent, healthcare and other relevant professionals – which operates across 4 domains (i) Rapid Case Reviews (RCR) where children/families/professionals consider together difficult treatment decisions. (ii) Ethical staff support (ESS) to combat moral distress/injury(MDI), (iii) Research (iv) Education. Data sourced from the bioethics database March-July 2020 Results: ♦ Initially, documents composed to support/guide hospital teams including PICU ♦ Activity highest in RCR: PICU referred 14 cases, 7 Sars-Cov-2 positive and 4 MIS for consideration of innovative therapies – all proceeded. COVID-negative referrals: 3:one innovative surgery, two RRT/limitation considerations. Parents attended 6/14 meetings via video-link, met PBC shortly afterward (6/7). ♦ Existing ESS mechanisms adapted: ‘coalface’ PICU drop-in sessions replaced by (a) individual informal (socially-distanced) face-to-face support (1-3/day Monday-Friday) & (b) video-link group sessions (1-8/week, mean 4.6) – most to staff deployed to local overwhelmed adult ICUs. MDI card adapted for wellbeing hub. ♦ Research – support to PICU/ID PIMS-TS/MIS and COVID-19 publications and separate ethics pieces. ♦ Education – webcasts for local, national & international PICU teams. Conclusions: Bioethics support has been fundamental in challenging COVID-19 clinical decision-making for children, families & staff. Bioethical staff support has also been key.

When life gives you no choice: Context of decision-making when offered an oncology clinical trial.

Patients with advanced cancer are faced with a wide variety of challenges and difficult treatment decisions made while in a vulnerable life-threatening situation, including decisions about clinical trial participation. Internationally, there is a great focus on shared decision-making as a way to help patients and healthcare professionals to make informed decisions together; nevertheless, research focusing on patient experiences shows that information about clinical trials is insufficient in supporting patients to make trial decisions in the context of their course of disease and managing life with advanced cancer. To explore where and how decisions about participation in oncology clinical trials are made and the role of the patients and healthcare professionals. Participant observation was used as a qualitative research method to gain knowledge about decision-making in different clinical situations. Data were analysed using thematic analysis. Four themes were developed: (a) preformed decisions, (b) dissimilar perceptions of successful treatment, (c) cues and concerns stated by patients and (d) creating common ground. There are underexposed aspects to be aware of in the decision-making process for clinical trial participation. Preformed decisions made by the physicians before the encounter with patients seemed to narrow down the patients' options and could have benefited from including the patients' views. Cues and concerns stated by patients were often neglected. However, when physicians talked with the patients about truly difficult issues such as treatment expectations, hope and death, it led to another kind of conversation about treatment decisions involving the patients' preferences. Awareness of preformed decisions and an increased focus on picking up cues and concerns about existential issues in the clinical encounter may improve the quality of the decisions and increase shared decision-making.

Chaplaincy Care in the MICU: Examining the Association Between Spiritual Care and End-of-Life Outcomes.

Seriously ill patients admitted to the Intensive Care Unit (ICU) experience severe spiritual and existential distress. Patients' surrogate decision makers face the burden of making complex decisions about their loved ones' care. Experienced chaplains may play a role in assisting with decision-making, possibly by aligning patients' values and wishes with treatment plans and avoiding non-beneficial aggressive measures. To identify associations between chaplaincy care and length of stay (LOS) in the medical ICU (MICU). This was a retrospective observational study of usual spiritual care in the adult MICUs of 4 medical centers in the United States over a 3-month period. Inclusion criteria were death in the MICU or discharge to palliative care or hospice. Measures included medical, treatment, and spiritual care information. Through bivariate and multivariable analyses associations between spiritual care and LOS were examined. In multivariable analysis of the 254 patients, receiving spiritual care was associated with an increased likelihood of being in a higher LOS tertile (adjusted odds ratio = 2.94, p < .001). In post hoc bivariate analysis, cases receiving spiritual care within the first 48 hours of MICU admission revealed a trend toward lower LOS (p = .181). Spiritual care in the MICU was associated with longer LOS. Early intervention by chaplains who are well-integrated in the ICU may assist patients and their loved ones in coming to terms with grave illness and making difficult treatment decisions. Further well-designed studies of spiritual care interventions that may affect outcomes are needed.