Child and Parent Access to Transplant Information and Involvement in Treatment Decision Making

2018 ◽  
Vol 41 (4) ◽  
pp. 576-591 ◽  
Author(s):  
Kristin Stegenga ◽  
Rebecca D. Pentz ◽  
Melissa A. Alderfer ◽  
Wendy Pelletier ◽  
Diane Fairclough ◽  
...  

Pediatric stem cell transplant processes require information sharing among the patient, family, and clinicians regarding the child’s condition, prognosis, and transplant procedures. To learn about perceived access to transplant information and involvement in decision making among child family members (9-22 years old), we completed a secondary analysis of 119 interviews conducted with pediatric patients, sibling donors, nondonor siblings/cousins, and guardians from 27 families prior to transplant. Perceptions of information access and involvement in transplant-related decisions were extracted and summarized. We compared child member perceptions to their guardians’ and examined differences by child age and gender. Most child members perceived exclusion from transplant (79%) and donor (63%) information and decisions (63%) although this varied by child role. Gender was unrelated to involvement; older age was associated with less perceived exclusion. Congruence in perspectives across children and guardians was evident for eight (30%) families, most of whom ( n = 7) excluded the children.

2019 ◽  
Vol 35 (4) ◽  
pp. 651-660
Author(s):  
Jackie Foster ◽  
Heather Moore ◽  
Jaime M. Preussler ◽  
Linda J. Burns ◽  
Jenna Hullerman Umar ◽  
...  

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 2246-2246 ◽  
Author(s):  
Kah Poh Loh ◽  
Sindhuja Kadambi ◽  
Supriya G. Mohile ◽  
Jason H. Mendler ◽  
Jane L. Liesveld ◽  
...  

Abstract Introduction: Despite data supporting the safety and efficacy of treatment for many older adults with AML, <40% of adults aged ≥65 receive any leukemia-directed therapy. The reasons for why the majority of older patients with AML do not receive therapy are unclear. The use of objective fitness measures (e.g. physical function and cognition) has been shown to predict outcomes and may assist with treatment decision-making, but is underutilized. As most patients are initially evaluated in community practices, exploring clinical decision-making and the barriers to performing objective fitness assessments in the community oncology setting is critical to understanding current patterns of care. We conducted a qualitative study: 1) to identify factors that influence treatment decision making from the perspectives of the community oncologists and older patients with AML, and 2) to understand the barriers to performing objective fitness assessments among oncologists. The findings will help to inform the design of a larger study to assess real-life treatment decision-making among community oncologists and patients. Methods: We conducted semi-structured interviews with 13 community oncologists (9 states) and 9 patients aged ≥60 with AML at any stage of treatment to elicit potential factors that influence treatment decisions. Patients were recruited from the outpatient clinics in a single institution and oncologists were recruited via email using purposive samples (patients: based on treatment received and stage of treatment; oncologists: based on practice location). Interviews were audio-recorded and transcribed. We utilized directed content analysis and adapted the decision-making model introduced by Zafar et al. to serve as a framework for categorizing the factors at various levels. A codebook was provisionally developed. Using Atlas.ti, two investigators independently coded the initial transcripts and resolved any discrepancies through an iterative process. The coding scheme was subsequently applied to the rest of the transcripts by one coder. Results: Median age of the oncologists was 37 years (range 34-64); 62% were females, 92% were white, 38% had practiced more than 15 years, and 92% reported seeing <10 older patients with AML annually. Median age of the patients was 70 years (64-80), 33% were females and all were Caucasian. In terms of treatment, 66% received intensive induction therapy, 22% received low-intensity treatment, and 11% received both. Three patients also received allogeneic hematopoietic stem cell transplant. Eighty-nine percent were initially evaluated and 56% were initially treated by a community oncologist. Factors that influenced treatment decision-making are shown in Figure 1. When making treatment decisions, both patients and oncologists considered factors such as patient's overall health, chronological age, comorbidities, insurance coverage, treatment efficacy and tolerability, and distance to treatment center. Nonetheless, there were distinct factors considered by patients (e.g. quality of care and facility, trust in their oncologist/team) and by oncologists (e.g. local practice patterns, availability of transplant/clinical trials, their own clinical expertise and beliefs) when making treatment decisions. The majority of oncologists do not perform an objective assessment of fitness. Most common reasons provided included: 1) Do not add much to routine assessments (N=8), 2) Lack of time, resources, and expertise (N=7), 3) Lack of awareness of the tools or the evidence to support its use (N=4), 4) Specifics are not important (e.g. impairments are clinically apparent and further nuance is not necessarily helpful; N=5), 5) Impairments are usually performed by other team members (N=2), and 6) Do not want to rely on scores (N=2). Conclusions: Treatment decision-making for older patients with AML is complex and influenced by many factors at the patient, disease/treatment, physician, and organizational levels. Despite studies supporting the utility of objective fitness assessments, these were not commonly performed in the community due to several barriers. Our framework will be useful to guide a larger study to assess real-life treatment decision-making in the community settings. We also identified several barriers raised by community oncologists that could be targeted to allow incorporation of objective fitness assessments. Figure 1. Figure 1. Disclosures Liesveld: Onconova: Other: DSMB; Abbvie: Honoraria. Stock:Jazz Pharmaceuticals: Consultancy. Majhail:Anthem, Inc.: Consultancy; Atara: Honoraria; Incyte: Honoraria. Wildes:Janssen: Research Funding. Klepin:Genentech Inc: Consultancy.


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 42-43
Author(s):  
Ajeet Gajra ◽  
Yamini S Rathish ◽  
Yolaine Jeune-Smith ◽  
Andrew J Klink ◽  
Bruce Feinberg

Introduction: In this era of targeted therapy, assessing MRD status is important to guide treatment decision-making in hematologic malignancies. While MRD assessment has long been incorporated the management of patients with acute lymphoblastic leukemia (ALL), there is mounting evidence that MRD-negativity is a critical end point in CLL and MM that correlates well with clinical outcomes. In CLL, undetectable MRD at the end of treatment in peripheral blood or bone marrow is associated with long-term survival (Thompson et al, Leukemia 2018). The international workshop on CLL (iwCLL) guidelines for response assessment in CLL now incorporate MRD assessment (Hallek, et al, Blood 2018). The international myeloma working group (IMWG) and the NCCN now recommend MRD assessment after each phase of MM therapy (induction, stem cell transplant, consolidation and maintenance). Higher rates of durable responses are noted in those with MRD-negativity after induction (Attal et al, NEJM 2017) and associated with favorable survival (Pavia et a, Blood 2008). Based on results from recent studies, MRD negative status can guide clinical decision-making about discontinuation of therapy in CLL (Jain et al, ASH 209 and Tam et al, ASH 2019) and in MM (Costa et al, ASH 2019 and Usmani et al, 2019). A majority of patients with CLL and MM are treated at community practices in the US. but adoption of MRD assessment among cH/O is unclear. We sought to study the self-reported utilization patterns of MRD assessment in CLL and MM, it's use in determining duration of therapy, and the barriers to it's adoption in practice among U.S. cH/O. Methods: U.S.-licensed oncologists and hematologists with broad geographic representation convened at a live meeting in January 2020 to review clinical updates presented at the 2019 ASH Annual Meeting. An electronic pre-meeting survey and live survey were fielded among cH/O meeting attendees. Surveys collected physician perceptions and reported use of MRD assessment for patients with CLL and MM. Responses to questions were summarized using descriptive statistics. Results: A total of 59 cH/O were included who self-identified their specialty as hematology/ oncology (51%) and medical oncology (34%) and reported MM (69%) and CLL (61%) as the two commonest hematologic malignancies treated by them. Excluding those that had not treated MM or CLL in the preceding 3 months, a subset of 46 cH/O were queried on their use and perceptions of MRD assessment in these two diseases. In CLL, 52% of the cH/O do not assess MRD status, and only 17% utilize MRD status in treatment discontinuation decisions. Major reasons for not using MRD status in practice include the perception shared by a majority (52%) of respondents that the evidence does not support its use in CLL at the present time. A minority (9%) utilized MRD assessment when treating younger fit patients with CLL. In MM, 50% do not assess for MRD at any time post-therapy, and 24% utilize MRD status in treatment discontinuation decisions. Major barriers to MRD assessment in MM were the perception that evidence does not support MRD use (59% of the respondents) and lack of payer coverage (11%). Additional details are presented in the Table below. Conclusions: These data from a limited sample of cH/O suggest that adoption of MRD testing among US cH/O is low, despite results from recent trials that highlight the importance of the MRD negativity as an important prognostic factor in both CLL and MM. Half of cH/O do not measure MRD at any point while treating MM and CLL and less than a fifth incorporate MRD data to determine duration of therapy. The greatest barrier to MRD assessment is the impression that there is lack of evidence supporting its utility in practice at the present time. Further education among cH/O is warranted regarding MRD assessment in CLL and MM given that MRD-negative status is associated with favorable prognosis and should be incorporated in treatment decision-making based on updated guidelines in both diseases. Disclosures Gajra: Cardinal Health: Current Employment. Jeune-Smith:Cardinal Health: Current Employment. Klink:Cardinal Health: Current Employment. Feinberg:Cardinal Health: Current Employment.


2017 ◽  
Vol 13 (2) ◽  
pp. 169-184 ◽  
Author(s):  
Shuya Kushida ◽  
Takeshi Hiramoto ◽  
Yuriko Yamakawa

In spite of increasing advocacy for patients’ participation in psychiatric decision-making, there has been little research on how patients actually participate in decision-making in psychiatric consultations. This study explores how patients take the initiative in decision-making over treatment in outpatient psychiatric consultations in Japan. Using the methodology of conversation analysis, we analyze 85 video-recorded ongoing consultations and find that patients select between two practices for taking the initiative in decision-making: making explicit requests for a treatment and displaying interest in a treatment without explicitly requesting it. A close inspection of transcribed interaction reveals that patients make explicit requests under the circumstances where they believe the candidate treatment is appropriate for their condition, whereas they merely display interest in a treatment when they are not certain about its appropriateness. By fitting practices to take the initiative in decision-making with the way they describe their current condition, patients are optimally managing their desire for particular treatments and the validity of their initiative actions. In conclusion, we argue that the orderly use of the two practices is one important resource for patients’ participation in treatment decision-making.


2007 ◽  
Author(s):  
Mary A. O'Brien ◽  
Timothy Whelan ◽  
Amiram Gafni ◽  
Cathy Charles ◽  
Peter Ellis

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