Giving voice to patients: Understanding treatment preferences of patients with multiple myeloma (MM).

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18302-e18302
Author(s):  
Caroline McKay ◽  
Eric Maiese ◽  
Joseph Chiarappa ◽  
Laura Sarokin ◽  
M. Janelle Cambron-Mellott ◽  
...  

e18302 Background: Findings from few studies examining preferences for MM treatment are limited in application, as they are largely missing the voices of patients (PTs). The present qualitative study elucidates PT preferences, the perceived trade-offs they are willing to make, and how these may differ by line of therapy (LOT). Methods: Semi-structured phone interviews were conducted with MM PTs (front-line [FL] = 11, early relapse 1- 2 prior-lines [1/2PL] = 10) recruited via purposive sampling from targeted panels and PT groups, April-May 2018. A discussion guide was developed and a trained interviewer conducted 1-hour interviews on the diversity and valence of factors influencing how PTs evaluate potential regimens and how preferences vary by experience (i.e., LOT). Interviews were audio recorded and transcribed, responses coded, and content analysis performed to identify key themes emerging from textual data. Results: The sample was 42% male, mean age 64 years, with mean 58 months since diagnosis. Three key themes were identified. Firstly, treatment decision-making, revealed that trust in one’s health care provider (HCP) was a potent influence on treatment choice. Whereas FL PTs reported often only one option is offered and rely on HCP to make decisions, 1/2PL PTs consider other sources of information and engage in more shared decision-making. Secondly, expectations about treatment, illustrated that HCPs discuss important factors, e.g., efficacy and tolerability, in general terms with FL PTs and provide more details to 1/2PL PTs. Lastly, “ top of mind” factors that influenced treatment decisions, effectiveness, followed by side effects, emerged as the greatest influences on preference, although 1/2PL PTs reported less concern with side effects than FL PTs. Relatedly, quality of life was described as salient; the lived experience of treatment was often mentioned within the context of side effects. Conclusions: The way PTs construct, prioritize, and communicate about treatment when assessing “benefit-risk” is a dynamic process, based on where PTs are in their treatment journey. By examining treatment preferences grounded in PTs’ lived and changing experiences with MM, the findings may contribute to better PT-HCP engagement through treatment decision-making and improve clinical care.

2014 ◽  
Vol 111 (4) ◽  
pp. 674-679 ◽  
Author(s):  
M Kunneman ◽  
A H Pieterse ◽  
A M Stiggelbout ◽  
R A Nout ◽  
M Kamps ◽  
...  

Author(s):  
Luke L Wang ◽  
Weranja K.B. Ranasinghe

Our objective was to review the current literature on patient participation and decision-making in the treatment selection process for localised prostate cancer, and to evaluate capacity for improvement. Methods: 42 articles from our literature search were deemed eligible and relevant for review. We reviewed studies on all facets of the treatment decision-making process with most number of articles (16) on treatment preferences. Results: The majority of the patients prefer an active or collaborative role in decision-making. Patients are seeking information from a myriad of sources but the recommendation from their treating physician is often the most influential on the final decision. Radical prostatectomy is more likely to be selected in patients who view a cure for cancer as being of the utmost importance and radiation therapy is preferred in patients who are concerned about treatment side effects. Conclusion: Currently no ideal tool exists to assist patients in making informed treatment decisions that also takes into account patients’ values and preferences. We encourage collaborative partnership in a multidisciplinary setting to optimise this process and individualised risk-based decision-making tools may provide a better pathway to assist patients reach decisions.


BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e026960 ◽  
Author(s):  
Kirsten McCaffery ◽  
Brooke Nickel ◽  
Kristen Pickles ◽  
Ray Moynihan ◽  
Barnett Kramer ◽  
...  

ObjectiveTo describe the lived experience of a possible prostate cancer overdiagnosis in men who resisted recommended treatment.DesignQualitative interview studySettingAustraliaParticipants11 men (aged 59–78 years) who resisted recommended prostate cancer treatment because of concerns about overdiagnosis and overtreatment.OutcomesReported experience of screening, diagnosis and treatment decision making, and its impact on psychosocial well-being, life and personal circumstances.ResultsMen’s accounts revealed profound consequences of both prostate cancer diagnosis and resisting medical advice for treatment, with effects on their psychological well-being, family, employment circumstances, identity and life choices. Some of these men were tested for prostate-specific antigen without their knowledge or informed consent. The men felt uninformed about their management options and unsupported through treatment decision making. This often led them to develop a sense of disillusionment and distrust towards the medical profession and conventional medicine. The findings show how some men who were told they would soon die without treatment (a prognosis which ultimately did not eventuate) reconciled issues of overdiagnosis and potential overtreatment with their own diagnosis and situation over the ensuing 1 to 20+ years.ConclusionsMen who choose not to have recommended treatment for prostate cancer may avoid treatment-associated harms like incontinence and impotence, however our findings showed that the impact of the diagnosis itself is immense and far-reaching. A high priority for improving clinical practice is to ensure men are adequately informed of these potential consequences before screening is considered.


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.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2137-2137
Author(s):  
Anita J Kumar ◽  
Rachel Murphy-Banks ◽  
Ruth Ann Weidner ◽  
Susan K Parsons

Introduction The treatment landscape of Hodgkin Lymphoma (HL) has undergone a revolution in recent years, providing multiple options for providers and patients in their shared goal for disease control. However, these successful treatment options (e.g. multi-agent chemotherapy, radiotherapy, or combined modality) come at a high cost in the form of late effects, with little known about long-term toxicity of novel agents (e.g., Brentuximab vedotin, immunotherapy). As part of an international effort to develop tools to enhance treatment decision-making for providers and patients, we developed a survey to learn about what role HL survivors played in their initial treatment decision(s) as well as to understand survivors' knowledge and experience of late effects. Methods The survey titled Understanding of Decision-Making among HL Survivors included three themes: 1) initial treatment plan; 2) role in decision-making about the plan and factors important to the treatment selection; and 3) understanding of late effects. The survey was initially piloted at a cancer conference in Spring 2019 after which modest revisions were made to improve clarity. The revised survey was then distributed nationally in a single push through the Leukemia & Lymphoma Society's voluntary email listserv (Summer 2019). Responses were captured in the HIPAA complaint, web-based application, REDCap®, and then analyzed with descriptive statistics. Results A total of 129 HL survivors responded to the survey. The majority of respondents (n=98, 76%) identified as female. While nearly half (46%) were between 1-5 years from treatment, 27% were <1 year off therapy or still in treatment, and 27% were treated > 5 years ago. Age distribution at diagnosis ranged from <18 years (n=3, 2%), 18-25 years (n=35, 27%), and >26 years (n=91, 71%). Two-thirds (n=83, 64%) of patients were treated with chemotherapy alone. Overall, 90% of survivors reported receiving ABVD or a close variant (e.g., AVD). The majority of survivors (n=88, 68%) reported only receiving one treatment option by their oncologist. Half (n=69, 54%) engaged in shared decision-making with their physician, with or without family/friends, 24% (n=31) deferred to their physician, 20% (n=26) decided on their own or with family/friend, and 2% (n=3) followed the plan determined by their physician and family on their behalf. Most respondents were treated in the community (n=77, 60%) with an additional 34% (n=44) reporting having been treated at an academic medical center. For 8 respondents (6%) the treatment site was categorized as other. Survivors were asked to rate the importance of factors in their initial treatment decision-making on a 3-point scale. Results were then dichotomized to important or not important. Health systems factors (e.g., cost, distance) were deemed less important, while patient-level factors (e.g., side effects, late effects) were widely endorsed (Table 1). The majority of survivors (n=107, 83%) were aware they are/may be at risk for late effects. Seventy percent (n=68 of 97) had been told at the time of discussion of treatment option(s) with their oncologist. The remainder (n=29 of 97, 30%) learned after completion of treatment or when transitioning care from their treating oncologist to survivorship or primary care. One third of respondents (n=46, 36%) reported they have been diagnosed with a late effect, which included substantial late effects of secondary malignancy (n=5, 11%) and cardiac toxicity (n=4, 9%). Discussion We report the results of a recent national survey of HL survivors, represented by an activated cohort that elects to participate in cancer advocacy groups. While two-thirds of respondents had little choice in initial treatment options, the majority endorsed the importance of side effects and late effects in treatment selection. Only half of survivors engaged in shared decision-making with their physician, indicating ample room for improvement and the development of tools to facilitate this process. Disclosures No relevant conflicts of interest to declare.


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.


2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 186-186 ◽  
Author(s):  
Nina A. Bickell ◽  
Sarah Abramson ◽  
Daniel Walker ◽  
Lindsey Sova ◽  
Jenny J Lin ◽  
...  

186 Background: Prostate cancer is the most common cancer for men in the US, yet the burden of this disease falls disproportionately on African Americans (AAs). The disparity’s etiology is complex. Surgery and radiotherapy offer similar survival but historically have different rates of performance with younger and white men more likely to undergo surgery and AAs more likely to experience underuse. This study aims to examine treatment decision-making (TDM) processes for AA men from patient and physician perspectives. Methods: At 1 academic and 1 municipal urban hospital, pathology records and a tumor registry from 2007-2012 were used to identify 359 AA and 282 white men with locally advanced prostate cancer, a Gleason score of 7-10, and receipt of definitive treatment. 15/17 treating physicians of participating patients were interviewed. Underuse overall was 4%, AA had higher rate of underuse compared to whites (6% vs. 1% respectively, p = 0.0002). 14 patients with longer times between diagnosis and treatment were recruited for 4 focus groups & 2 interviews lasting 60-90 minutes eliciting perspectives on themes related to TDM. Transcripts were coded and analyzed using a grounded theory approach. Results: Preliminary analysis of patient interviews suggests that patients primarily base their treatment decisions on physician recommendations. Patients were often unaware of treatment side effects. However, some patients felt this deficit helped them decide to receive treatment, whereas if they had known about possible impotence and incontinence, they would have refused treatment. Physicians recognized that patient concerns about side effects were a critical TDM factor. Physicians attributed prolonged delays between diagnosis and treatment to waiting times for tests of possible tumor spread and medical comorbidities. Conclusions: Understanding decision making and care processes for AA men with local advanced prostate cancer is critical to reducing the treatment and outcome disparities in this population. This study identifies several patient and physician/system factors that contribute to this process. These data can help inform interventions to improve prostate cancer care for AA men.


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.


2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 237.2-238
Author(s):  
A. Ogdie ◽  
C. Mansfield ◽  
K. Myers ◽  
W. Tillett ◽  
P. Nash ◽  
...  

Background:Despite recent advances in the treatment of psoriatic arthritis (PsA), many patients experience inadequate response or intolerance to therapy, indicating that unmet treatment-related needs remain. An understanding of patients’ experience with PsA and its treatment is needed to bring the patient’s perspective into treatment decision-making and development of new therapies.Objectives:To better understand real-world PsA patients’ experience with PsA via evaluation of (1) the burden and importance of common PsA symptoms and disease impacts and (2) treatment preferences.Methods:A cross-sectional, web-based survey was developed, informed by published literature and treatment guidelines, expert clinical opinion, and cognitive debriefing interviews with PsA patients. Adults with a self-reported diagnosis of PsA were recruited from a US rheumatology patient-centered research registry and other online patient communities. Object case best-worst scaling (BWS) was used to evaluate the relative burden of 11 PsA-related symptoms and the relative importance of improvement in 9 PsA-related disease impacts. BWS data were analyzed using a random parameters logit model. Data on patient demographics and preferences for PsA treatment attributes, including experience with methotrexate and preference for route and frequency of administration, were analyzed descriptively.Results:The sample of 247 respondents was 79% female, had a mean age of 53.4 years (range 24-79 years), and had a mean time since PsA diagnosis of 9.4 years, with 86% currently being treated by a rheumatologist. The most common PsA symptoms ever experienced were joint pain, morning stiffness and fatigue, while the least common symptom was skin pain/discomfort related to psoriasis patches. In the BWS, patients reported pain-related symptoms (i.e., joint pain and lower back or spine pain) as the most bothersome, while the least bothersome symptoms were psoriasis-related (Figure 1). Patients reported ability to perform physical activities as the most important disease impact to improve, followed by ability to live/function independently, sleep quality, and ability to do daily activities. Nearly half the sample (49%) stated they would strongly prefer a treatment for PsA that does not include methotrexate. Among patients who were not satisfied with methotrexate, the top reason was dislike of the short-term side effects after each dose. When asked to choose among four different ways of taking their PsA medication (oral once a day, oral twice a day, injection every 2 weeks, injection once a month), the most preferred method was oral once a day (38%) followed by injection once a month (26%), with 24% indicating no preference. Additionally, 49% of the sample felt that mode of administration was an important factor when deciding to start a new therapy.Conclusion:Among real-world patients with PsA, the most bothersome PsA symptoms were related to pain while patients most wanted to improve functional impacts of their disease. Patients most preferred an oral once a day treatment option and treatment regimens that do not include methotrexate. These findings can serve to better inform development of new therapies and guide shared patient-provider treatment decision making.Disclosure of Interests:Alexis Ogdie Consultant of: Abbvie, Amgen, BMS, Celgene, Corrona, Gilead, Janssen, Lilly, Novartis, Pfizer, UCB, Grant/research support from: Pfizer to Penn, Novartis to Penn, Amgen to Forward/NDB.Royalties: Novartis to husband, Carol Mansfield: None declared, Kelley Myers: None declared, William Tillett Speakers bureau: AbbVie, Amgen, Celgene, Lilly, Janssen, Novartis, Pfizer Inc., and UCB, Consultant of: AbbVie, Amgen, Celgene, Lilly, Janssen, Novartis, MSD, Pfizer Inc., and UCB, Grant/research support from: AbbVie, Celgene, Eli Lilly, Janssen, Novartis, Pfizer Inc, Peter Nash Grant/research support from: Abbvie, Pfizer, Roche, Sanofi, Boerhringer, Lilly, Novartis, BMS, MSD, Janssen, Gilead, and Samsung, Colton Leach: None declared, W. Benjamin Nowell Grant/research support from: AbbVie, Amgen, and Eli Lilly, Kelly Gavigan: None declared, Patrick Zueger Shareholder of: AbbVie, Employee of: AbbVie, Erin McDearmon-Blondell Shareholder of: AbbVie, Employee of: AbbVie, Jessica A. Walsh Consultant of: AbbVie, Amgen, Eli Lilly and Company, Janssen, Merck, Novartis, Pfizer, UCB, Grant/research support from: AbbVie, Merck, Pfizer.


Sign in / Sign up

Export Citation Format

Share Document