scholarly journals Parent values and preferences underpinning treatment decision making in poor prognosis childhood cancer: a scoping review protocol

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e046284
Author(s):  
Helen Pearson ◽  
Faith Gibson ◽  
Anne-Sophie Emma Darlington

IntroductionParents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents’ individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret, identifying the values and preferences of parents who are making these treatment decisions may enhance the support that can be provided by healthcare professionals. An increased understanding will support future work in this area and identify research gaps that could strengthen support strategies in clinical practice. The aim of this scoping review is to explore parent values and preferences underpinning treatment decision making when their child is receiving cancer-directed therapy for a poor prognosis cancer.Methods and analysisThe Joanna Briggs Institute scoping review methodology will be followed. An initial database search of CINHAL and MEDLINE will be conducted to analyse the keywords using subject headings and Medical Subject Headings terms. Articles will be initially screened on title and abstract. The reference and citation lists of the full-text articles to be included will be searched using Web of Science. Articles will be independently reviewed by two reviewers and any discrepancies discussed with a third reviewer. Data extracted will be presented in tabular, diagrams and descriptive summaries.Ethics and disseminationEthical approval is not required for this scoping review. This review will inform further research with parents to understand their values and preferences when making repeated treatment decisions when their child has a poor prognosis cancer. All outputs will be disseminated through peer-reviewed publications and conference presentations.This scoping review is registered on the Open Science Framework (https://osf.io/n7j9f).

2020 ◽  
Author(s):  
Akila Visvanathan ◽  
Gillian Mead ◽  
Martin Dennis ◽  
William Whiteley ◽  
Fergus Doubal ◽  
...  

Abstract Background Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient’s treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs. Method Semi-structured interviews with family members (n=24) of patients with major stroke, within two weeks of hospital admission. Data were analysed thematically. Results Families’ approach to treatment decision-making lay on a spectrum according to the patient’s state of health pre-stroke (i.e. patient’s prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients’ deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive. Conclusion The knowledge that family members’ treatment decision-making approaches lay on a spectrum depending on the patient’s state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient’s prognosis. This may enable doctors to provide information and support that is tailored towards family members’ needs.


2020 ◽  
Author(s):  
Akila Visvanathan ◽  
Gillian Mead ◽  
Martin Dennis ◽  
William Whiteley ◽  
Fergus Doubal ◽  
...  

Abstract Background Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient’s treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs. Method Semi-structured interviews with family members (n=24) of patients with major stroke, within two weeks of hospital admission. Data were analysed thematically. Results Families’ approach to treatment decision-making lay on a spectrum according to the patient’s state of health pre-stroke (i.e. patient’s prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients’ deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive. Conclusion The knowledge that family members’ treatment decision-making approaches lay on a spectrum depending on the patient’s state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient’s prognosis. This may enable doctors to provide information and support that is tailored towards family members’ needs.


2018 ◽  
Vol 13 (7) ◽  
Author(s):  
Mustafa Andkhoie ◽  
Desneige Meyer ◽  
Michael Szafron

Introduction: The purpose of this research is to gather, collate, and identify key factors commonly studied in localized prostate cancer (LPC) treatment decision-making in Canada and the U.S.Methods: This scoping review uses five databases (Medline, EMBASE, CINAHL, AMED, and PsycInfo) to identify relevant articles using a list of inclusion and exclusion criteria applied by two reviewers. A list of topics describing the themes of the articles was extracted and key factors were identified using principal component analysis (PCA). A word cloud of titles and abstracts of the relevant articles was created to identify complementary results to the PCA.Results: This review identified 77 relevant articles describing 32 topics related to LPC treatment decision-making. The PCA grouped these 32 topics into five key factors commonly studied in LPC treatment decision-making: 1) treatment type; 2) socioeconomic/demographic characteristics; 3) personal reasons for treatment choice; 4) psychology of treatment decision experience; and 5) level of involvement in the decision-making process. The word cloud identified common phrases that were complementary to the factors identified through the PCA.Conclusions: This research identifies several possible factors impacting LPC treatment decision-making. Further research needs to be completed to determine the impact that these factors have in the LPC treatment decision-making experience.


2007 ◽  
Vol 20 (3) ◽  
pp. 174-182 ◽  
Author(s):  
Elina Jaakkola

While patient participation in treatment decisions is increasingly advocated in medical literature, patient demand has been considered to cause unnecessary prescribing. Using the concept of customer participation as discussed in services marketing and management literature as a theoretical base, the paper analyses the influence of patient participation on the medical service process and treatment decision-making. A qualitative, explorative study was conducted to investigate American and British physicians' views on patient participation in the treatment of osteoporosis and schizophrenia. It became evident that in the cases of both osteoporosis and schizophrenia, patients influence prescribing decisions despite the significant difference in their willingness and ability to participate. The manifestations of patient participation were divided into three groups: (1) resources, such as the patient's condition and information about it, and his/her preconceived notions and preferences, (2) actions, such as preparing for the service, negotiating decisions and implementing the treatment, and (3) the patient's role expectations and inclination to participate. The influence of such manifestations on prescribing decision-making is discussed in detail, and differences between the studied illnesses are explained. Implications to health-care managers and practitioners are discussed.


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.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18012-e18012
Author(s):  
Lauren P. Wallner ◽  
Yun Li ◽  
Chandler McLeod ◽  
Ann S Hamilton ◽  
Kevin C. Ward ◽  
...  

e18012 Background: Little is known about the size and characteristics of informal decision support networks of women diagnosed with breast cancer and whether involvement of informal decision supporters (DSP) influences breast cancer treatment decisions. Methods: A population-based sample of newly diagnosed breast cancer patients reported to the Georgia and Los Angeles SEER registries in 2014-15 were surveyed approximately 6 months after diagnosis (N = 2,502, 68% response rate). Network size was estimated by asking women to list up to 3 of the most important DSPs who helped them with locoregional therapy decisions. For each individual DSP listed, respondents reported how important each DSP’s opinion was in treatment decision making, and how satisfied they were with their involvement (5 pt. scales, “not at all” to “very”). Decision deliberation was measured using 5-items assessing degree patients thought through the decision, with higher scores reflecting more deliberative treatment decisions. We compared network size (0-3 or more) across patient-level characteristics and estimated the association between network size and deliberation using multivariable linear regression. Results: Of the 2,502 women in this analysis, 51% reported having 3 or more DSPs, 20% reported 2, 18% reported 1, and 11% reported not having any DSPs. Married/partnered women, those younger than 45 years old, and black women were all more likely to report larger networks (all p < 0.001). Partnered women most often reported their partner as their main DSP (37.9%), whereas not partnered/unmarried women most often reported children (38.4%). The majority of women were highly satisfied with their DSP being involved in their decisions (76.5%) and 68.6% felt their DSP was very important in their decision making. Larger support networks were associated with more deliberative surgical treatment decision-making (p < 0.001). Conclusions: Most women engaged multiple DSPs in their treatment decision making, including spouses, children, and friends. Involving more DSPs was associated with more deliberative treatment decisions. Future initiatives to improve breast cancer treatment decision making should acknowledge and engage informal DSPs.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 227-227
Author(s):  
Valerie Lawhon ◽  
Rebecca England ◽  
Audrey S. Wallace ◽  
Courtney Williams ◽  
Stacey A. Ingram ◽  
...  

227 Background: Shared decision-making (SDM) occurs when both patient and provider are involved in the treatment decision-making process. SDM allows patients to understand the pros and cons of different treatments while also helping them select the one that aligns with their care goals when multiple options are available. This qualitative study sought to understand different factors that influence early-stage breast cancer (EBC) patients’ approach in selecting treatment. Methods: This cross-sectional study included women with stage I-III EBC receiving treatment at the University of Alabama at Birmingham from 2017-2018. To understand SDM preferences, patients completed the Control Preferences Scale and a short demographic questionnaire. To understand patient’s values when choosing treatment, semi-structured interviews were conducted to capture patient preferences for making treatment decisions, including surgery, radiation, or systemic treatments. Interviews were audio-recorded, transcribed, and analyzed using NVivo. Two coders analyzed transcripts using a constant comparative method to identify major themes related to decision-making preferences. Results: Amongst the 33 women, the majority of patients (52%) desired shared responsibility in treatment decisions. 52% of patients were age 75+ and 48% of patients were age 65-74, with an average age of 74 (4.2 SD). 21% of patients were African American and 79% were Caucasian. Interviews revealed 19 recurrent treatment decision-making themes, including effectiveness, disease prognosis, physician and others’ opinions, side effects, logistics, personal responsibilites, ability to accomplish daily activities or larger goals, and spirituality. EBC patient preferences varied widely in regards to treatment decision-making. Conclusions: The variety of themes identified in the analysis indicate that there is a large amount of variability to what preferences are most crucial to patients. Providers should consider individual patient needs and desires rather than using a “one size fits all” approach when making treatment decisions. Findings from this study could aid in future SDM implementations.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24030-e24030
Author(s):  
Debra Wujcik ◽  
Nikolaos Papadantonakis ◽  
Sarah Allison Wall ◽  
Margaret T. Kasner ◽  
OMER HASSAN JAMY ◽  
...  

e24030 Background: AML is a disease of older adults, with median age of 68 years at presentation. NCCN guidelines suggest comprehensive geriatric assessments (GA) be included in clinical practice to guide treatment decisions. Utility of GA in older AML patients in a real-world environment is not yet established. We tested the feasibility of using a modified GA (mGA), administered by patient self-report on a touchscreen computer, real-time use and utility by clinicians and the correlation of mGA results on treatment decision-making. Methods: Sixty-two patients were recruited from three sites to complete a tablet-based mGA screening at a treatment decision-making time point. The mGA consists of the Frailty Index (FI) that includes four domains: age, activities of daily living, instrumental ADLs, and comorbidities. Falls within the past 6 months and patient reported health interference with function are also assessed. Results are displayed for the clinician to inform the treatment discussion. Results: Participants were mean age 73 years (range 61-88), 63% male, and 90% white. Frailty Index result was 32% fit, 40% intermediate, and 28% frail. Providers were asked the fit/frailty status prior to seeing the results of the mGA. Of 53 provider responses, there was 57% (n=30) provider concordance with the mGA result; 9% (n=5) said fit when mGA said intermediate and 17% (n=9) said intermediate when mGA said frail. When asked their goals of care, nearly all (n=60, 97%) patients agreed with the statement “my cancer is curable”, yet 30% (n=19) disagreed the treatment goal was to get rid of all the cancer. Nearly half (n=30) indicated they want to make treatment decisions together with the provider rather than provider or patient making decision alone. 73% (45/62) of patients were satisfied with the ease of using the survey and took an average 16.3 minutes to complete. Patient self-reported presence/severity of eight symptoms at baseline (see Table). Conclusions: A simple electronic tool may provide valuable insight into patient understanding of disease to better tailor patient-provider discussion and treatment decision-making. Providers overestimated fitness 26% of the time. Final results will be presented to include the outcome at 3 months by Frailty Index. [Table: see text]


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 ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4787-4787
Author(s):  
Julie Olson ◽  
Shauna McManus ◽  
Melissa F. Miller ◽  
Thomas W. LeBlanc ◽  
Eva Yuen ◽  
...  

Abstract Background: Over the past decade, an increase in treatment options for chronic myeloid leukemia (CML) has dramatically changed the therapeutic landscape and has improved clinical outcomes. This abundance of treatment options may make it difficult for CML patients to feel knowledgeable about what options are available to them, may hinder patients' preparedness for having conversations about treatment, and, similarly, may contribute to patients feeling less involved in treatment decision making (TDM). In light of this changing landscape, we explored whether the TDM experience was linked to satisfaction with treatment outcomes in a national sample of CML patients. Methods: Using data from the Cancer Support Community's Cancer Experience Registry®, our analytic sample included 310 participants who reported CML as their primary diagnosis. The dependent variable in all analyses was a dichotomous, patient-reported indicator of satisfaction with treatment outcomes (satisfied or not satisfied). Our independent variables include three measures that capture the TDM experience: feeling involved in the TDM process; feeling knowledgeable about treatment options prior to making treatment decisions; and, feeling prepared to discuss treatment options with one's doctor. Respondents ranked TDM knowledge, preparedness, and involvement from 0 = "not at all" to 4 = "very much." Responses were dichotomized such that 1 = "quite a bit" or "very much" and 0 = "not at all," "a little bit" or "somewhat." Analytically, we compared patients who reported high satisfaction with treatment outcomes to those who reported low satisfaction, using Student's t-test. Then, we estimated multivariate logistic regression models predicting odds of being satisfied with treatment outcome by TDM knowledge, preparedness, and involvement. Regression models controlled for demographic characteristics including age, gender, and race; clinical factors such as time since diagnosis and symptom burden; treatment-related measures including financial impact of treatment; and the degree to which individuals felt their health care teams prepared them to manage treatment side effects. Results: Descriptively, our sample was 65% female and 87% non-Hispanic White, with an average age of 56.6 years (SD = 12) and mean time since diagnosis of 6 years (SD = 5). Most (74%) reported being "quite a bit" to "very much satisfied" with their treatment outcomes. Experiences with TDM, however, were variable. When making treatment decisions, 52% reported feeling involved, 41% reported feeling knowledgeable, and 21% felt prepared. Importantly, t-test results suggested that individuals with greater involvement, more knowledge, and higher preparedness were significantly more likely to report satisfaction with treatment outcomes. Results of the multivariate models demonstrated a greater likelihood of treatment satisfaction among individuals who felt prepared to discuss treatment options with their health care team, even after controlling for demographic, clinical, and treatment-related characteristics. In fact, prepared individuals were nearly 6 times as likely to be satisfied with their treatment outcomes, as compared to individuals who did not feel prepared to discuss treatment options (p < .05). Conclusion: Most of our patients with CML did not feel prepared to make treatment decisions. However, those who feel more prepared to discuss treatment options with their doctors are also more likely to report satisfaction with treatment outcomes. As new CML treatment options become available, our results highlight the need for an increased focus on shared decision making in clinical practice. This may necessitate providing patients with more resources to help prepare them for treatment-related conversations. Disclosures Birhiray: Takeda: Research Funding, Speakers Bureau; Genomic Health: Patents & Royalties; Amgen: Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Alexion: Consultancy; Puma: Research Funding, Speakers Bureau; Pharmacyclics: Speakers Bureau; Janssen: Consultancy, Speakers Bureau; Bristol Myers Squibb: Speakers Bureau; Norvatis: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Bayer: Membership on an entity's Board of Directors or advisory committees; Eli-Lilly: Speakers Bureau; Excelis: Speakers Bureau; Clovis Oncology: Speakers Bureau; Sanofi Oncology: Speakers Bureau; Incyte: Speakers Bureau; AstraZeneca: Speakers Bureau; Tessaro: Speakers Bureau; Pfizer: Speakers Bureau; Celgene: Membership on an entity's Board of Directors or advisory committees; Helsinn: Membership on an entity's Board of Directors or advisory committees; Abbvie: Membership on an entity's Board of Directors or advisory committees.


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