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Patient and proxy reports regarding the experience of treatment decision-making in cancer care.

ABSTRACT: Objective: Shared decision-making, including the elicitation of patient preferences regarding treatment decisions, is considered part of high-quality cancer care. However, patients may not be able to self-report due to illness, and therefore proxy reports may be used. We sought to determine the difference between proxy and patient reports about patient decisions and preferences among patients who received or were scheduled for chemotherapy using data from a large, population-based survey of patients with incident lung or colorectal cancer.

Methods: Of 3573 patients who received or were scheduled for chemotherapy, 3108 self-reported and 465 had proxies reporting on their behalf about preferred and actual decision roles regarding this treatment. Preferred and actual decision roles were assessed using the Control Preferences Scale, and categorized as shared, patient-controlled, or doctor-controlled. Multivariable logistic regression models were used to assess the association between patient and proxy responses and whether preferences were met. The models adjusted for sociodemographic and clinical variables and patient/proxy-reported health status.

Results: Sixty-three percent of all respondents reported actual roles in decisions that matched their preferred roles (role attainment). Proxies and patients were similarly likely to report role attainment (65% vs 63%). In adjusted analyses, proxies were more likely report role attainment (OR = 1.27, 95%CI = 1.02-1.59), but this difference was smaller if health variables were excluded from the model (OR = 1.14, 95%CI = 0.92-1.41).

Conclusion: Most patients' preferences for treatment participation were met. Surveys from proxies appear to yield small differences on the reports of attainment of preferred treatment decision-making roles in cancer care vs surveys from patients.

SUBMITTER: Roydhouse JK

PROVIDER: S-EPMC7722082 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Patient and proxy reports regarding the experience of treatment decision-making in cancer care.

Roydhouse Jessica K JK Gutman Roee R Wilson Ira B IB Kehl Kenneth L KL Keating Nancy L NL

Psycho-oncology 20200927 11

<h4>Objective</h4>Shared decision-making, including the elicitation of patient preferences regarding treatment decisions, is considered part of high-quality cancer care. However, patients may not be able to self-report due to illness, and therefore proxy reports may be used. We sought to determine the difference between proxy and patient reports about patient decisions and preferences among patients who received or were scheduled for chemotherapy using data from a large, population-based survey ...[more]

PMID: 32840909

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Project description:BackgroundDespite a national focus on post-acute care brought about by recent payment reforms, relatively little is known about how hospitalized older adults and their caregivers decide whether to go to a skilled nursing facility (SNF) after hospitalization.ObjectiveWe sought to understand to what extent hospitalized older adults and their caregivers are empowered to make a high-quality decision about utilizing an SNF for post-acute care and what contextual or process elements led to satisfaction with the outcome of their decision once in SNF.DesignQualitative inquiry using the Ottawa Decision Support Framework (ODSF), a conceptual framework that describes key components of high-quality decision-making.ParticipantsThirty-two previously community-dwelling older adults (≥ 65 years old) and 22 caregivers interviewed at three different hospitals and three skilled nursing facilities.Main measuresWe used key components of the ODSF to identify elements of context and process that affected decision-making and to what extent the outcome was characteristic of a high-quality decision: informed, values based, and not associated with regret or blame.Key resultsThe most important contextual themes were the presence of active medical conditions in the hospital that made decision-making difficult, prior experiences with hospital readmission or SNF, relative level of caregiver support, and pressure to make a decision quickly for which participants felt unprepared. Patients described playing a passive role in the decision-making process and largely relying on recommendations from the medical team. Patients commonly expressed resignation and a perceived lack of choice or autonomy, leading to dissatisfaction with the outcome.ConclusionsUnderstanding and intervening to improve the quality of decision-making regarding post-acute care supports is essential for improving outcomes of hospitalized older adults. Our results suggest that simply providing information is not sufficient; rather, incorporating key contextual factors and improving the decision-making process for both patients and clinicians are also essential.

Project description:Exploring variation in patients' experiences of involvement in treatment decision making can identify groups needing extra support, such as additional consultation time, when considering treatment options.We analysed data from the 2010 English National Cancer Patient Experience Survey, a national survey of all patients attending hospitals in England for cancer treatment over a 3-month period, to examine how experience of involvement in decisions about treatment varied between patients with 38 different primary cancers using logistic regression. We analysed responses from 41?411 patients to a single question examining patient experience of involvement in treatment decision making. We calculated unadjusted odds ratios of reporting the most positive experience between patients of different sociodemographic and tumour characteristics and explored the effects of adjusting for age, gender, ethnicity, deprivation, cancer type and hospital of treatment.Of the 41?441 respondents, 29?776 (72%) reported positive experiences of decision-making involvement. Younger patients reported substantially less positive experiences of involvement in decision making (adjusted OR=0.49 16-24 vs 65-74; P<0.001), as did ethnic minorities (adjusted ORs=0.52, 0.62 and 0.73 for Black, Chinese and Asian vs White patients, respectively; P<0.001). Experience varied considerably between patients with different cancers ( e.g., OR=0.52 for anal and 1.37 for melanoma vs colon cancer; P<0.001), with ovarian, myeloma, bladder and rectal cancer patients reporting substantially worse experiences compared with other patients with gynaecological, haematological, urological and colorectal cancers, respectively. Clustering of different patient groups within hospitals with outlying performance report scores could not account for observed differences.Efforts to improve involvement in treatment decision making can focus on those who report the worst experience, in particular younger patients, ethnic minorities and patients with rectal, ovarian, multiple myeloma and bladder cancer.

Project description:BackgroundTo describe vascular access (VA)-related decision-making from the patient perspective, in patients who have already chosen hemodialysis as their renal replacement modality, and identify areas where physicians can improve this experience.MethodsIn-person, semi-structured interviews with 15 patients with end-stage kidney disease were systematically analyzed by two independent researchers using thematic analysis. Interviews were conducted until systematic analysis revealed no new themes.ResultsPatients had mean age 57 (range 22-85), with seven males and diverse racial/ethnic/marital status. All (15/15) patients viewed VA as "intertwined and interrelated" with dialysis, prioritized the dialysis, described the VA merely as the "hookup" to life-preserving dialysis and gave it minimal consideration. Three themes were identified: consolidation of dialysis and VA, reliance on supportive advisors and communication with physicians. Although 14/15 patients described processes common to medical decision-making, including information seeking, learning from the experiences of others, and weighing risks and benefits, they did not apply these processes specifically to VA. While all participants took ownership of the VA decision, they lacked clear understanding about the different types of VA and their consequences. Most patients (14/15) depended on family and friends for reinforcement, motivation and advice. Patients all described physician characteristics they associated with trustworthiness, the most common being listening and explaining, demonstrating empathy and making an effort to meet the patient's individual needs. Perceived arrogance, unavailability and lack of expertise represented untrustworthiness. The majority (14/15) accepted VA recommendations from physicians they found trustworthy and authoritative.ConclusionsThe study participants were minimally engaged in VA decision-making. Educational aids and shared decision-making tools are needed to empower patients to make better-informed, self-efficacious VA decisions.

Project description:BackgroundSeveral classifications have been proposed for subscapularis tendon tearing (SCTs); however, there remains a poor agreement between orthopedic surgeons regarding the diagnosis and management of these lesions. Distinguishing the various tear patterns and classifying them with some prognostic significance may aid the operating surgeon in planning appropriate treatment.PurposeThe purpose of this study was to outline the current literature regarding SCT classification and treatment and conduct a survey among shoulder and elbow surgeons to identify the approaches regarding surgical decision-making for these injuries.MethodsIn this systematic review, we analyzed 12 articles regarding the subscapularis tendon tear classification and implications regarding treatment plans and outcomes. In addition, 4 international experts in subscapularis repair surgery participated in the development of a questionnaire form that was distributed to 1161 ASES members. One hundred sixty five surgeons participated and chose whether they agree, disagree, or abstain for each of the 32 statements in 4 parts including indications/contraindications, treatment plan, and the factors affecting outcomes in the survey.ResultsClassification criteria were extremely variable with differing recommendations and descriptions of tear morphology; most were based on tear size, associated shoulder pathology, or lesser tuberosity footprint exposure. Considering the multiple classification systems and the overall poor agreement regarding SCT management, our study found that the most widely agreed upon (more than 80%) statements included early surgery is advised for traumatic SCT, chronic degenerative SCT (without fatty infiltration) associated with acute supraspinatus tear is a candidate for repair, and rotator cuff arthropathy is a contraindication for SCT repair.ConclusionOur study was able to identify both patient and tear characteristics that are well agreed upon among surgeons in the treatment of these injuries. Lafosse classification is generally widely accepted; however, it needs to be improved by some additions. Continued collaboration among surgeons is needed to establish an acceptable and broadly applicable classification system for the management of these injuries.

Project description:OBJECTIVES:As shared decision making (SDM) has received increased attention as a method to improve the patient-centeredness of emergency department (ED) care, we sought to determine patients' desired level of involvement in medical decisions and their perceptions of potential barriers and facilitators to SDM in the ED. METHODS:We surveyed a cross-sectional sample of adult ED patients at three academic medical centers across the United States. The survey included 32 items regarding patient involvement in medical decisions including a modified Control Preference Scale and questions about barriers and facilitators to SDM in the ED. Items were developed and refined based on prior literature and qualitative interviews with ED patients. Research assistants administered the survey in person. RESULTS:Of 797 patients approached, 661 (83%) agreed to participate. Participants were 52% female, 45% white, and 30% Hispanic. The majority of respondents (85%-92%, depending on decision type) expressed a desire for some degree of involvement in decision making in the ED, while 8% to 15% preferred to leave decision making to their physician alone. Ninety-eight percent wanted to be involved with decisions when "something serious is going on." The majority of patients (94%) indicated that self-efficacy was not a barrier to SDM in the ED. However, most patients (55%) reported a tendency to defer to the physician's decision making during an ED visit, with about half reporting they would wait for a physician to ask them to be involved. CONCLUSION:We found that the majority of ED patients in our large, diverse sample wanted to be involved in medical decisions, especially in the case of a "serious" medical problem, and felt that they had the ability to do so. Nevertheless, many patients were unlikely to actively seek involvement and defaulted to allowing the physician to make decisions during the ED visit. After fully explaining the consequences of a decision, clinicians should make an effort to explicitly ascertain patients' desired level of involvement in decision making.

Project description:Objectives/hypothesisTo explore possible factors that might impact a patient's choice to pursue endoscopic sinus surgery (ESS) or continue with medical management for treatment of refractory chronic rhinosinusitis (CRS).Study designCross-sectional evaluation of a multicenter prospective cohort.MethodsTwo hundred forty-two subjects with CRS were prospectively enrolled within four academic tertiary care centers across North America with ongoing symptoms despite prior medical treatment. Subjects either self-selected continued medical management (n = 62) or ESS (n = 180) for treatment of sinonasal symptoms. Differences in demographics, comorbid conditions, and clinical measures of disease severity between subject groups were compared. Validated metrics of social support, personality, risk aversion, and physician-patient relationships were compared using bivariate analyses, predicted probabilities, and receiver operating characteristic curves at the 0.05 alpha level.ResultsNo significant differences were found between treatment groups for any demographic characteristic, clinical cofactor, or measure of social support, personality, or the physician-patient relationship. Subjects electing to pursue sinus surgery did report significantly worse average quality-of-life (QOL) scores on the 22-item Sinonasal Outcome Test (SNOT-22; P < .001) compared to those electing continued medical therapy (54.6 ± 18.9 vs. 39.4 ± 17.7), regardless of surgical history or polyp status. SNOT-22 score significantly predicted treatment selection (odds ratio, 1.046; 95% confidence interval, 1.028-1.065; P < .001) and was found to accurately discriminate between subjects choosing endoscopic sinus surgery and those electing medical management 72% of the time.ConclusionsWorse patient-reported disease severity, as measured by the SNOT-22, was significantly associated with the treatment choice for CRS. Strong consideration should be given for incorporating CRS-specific QOL measures into routine clinical practice.Level of evidence2b.

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Patient and proxy reports regarding the experience of treatment decision-making in cancer care.

Publications

Patient and proxy reports regarding the experience of treatment decision-making in cancer care.

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