Goals and Adverse Effects: Rate of Concordance Between Patients and Providers

Abstract

PURPOSE: Adequate understanding of the goals and adverse effects of cancer treatment has important implications for patients’ decision making, expectations, and mood. This study sought to identify the degree to which patients and clinicians agreed upon the goals and adverse effects of treatment (ie, concordance). METHODS: Patients completed a demographic questionnaire, the National Comprehensive Cancer Network Distress Thermometer, the Medical Outcomes Study Social Support Survey, the Functional Assessment of Chronic Illness Therapy-Treatment Satisfaction-General questionnaire, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being questionnaire, and a 13-item questionnaire about the goals and adverse effects of treatment. Providers completed a 12-item questionnaire. RESULTS: One hundred patients (51 female) and 34 providers participated (questionnaire return rate mean difference, 5 days; SD, 16 days). Patient and provider dyads agreed 61% of the time regarding the intent of treatment. In cases of nonagreement, 36% of patients reported more optimistic therapy goals compared to providers. Patients and providers agreed 69% of the time regarding the patient’s acknowledgement and understanding of adverse effects. Patients who reported an understanding of likely adverse effects endorsed significantly lower distress scores (mean, 2.5) than those who endorsed not understanding associated adverse effects (mean, 4.1; P = .008). CONCLUSION: Timely data capturing of patient-provider dyadic ratings is feasible. A significant discrepancy exists between a substantial percentage of patients’ and providers’ views of the intent and adverse effects of treatment. Patients were almost always more optimistic about the intent of treatment. Higher rates of distress were noted in cases of discordance. Providers may benefit from conversational feedback from patients as well as other integrated feedback systems to inform them about patient understanding.

Supported self-management as a model for end-of-life care in the setting of malignant bowel obstruction: A qualitative study

“…Such findings are consistent with existing literature on the value of concordance between oncology patients and providers [22][23][24]. Discrepancies between patients' reported symptom burden and their physicians' estimation of them are common and associated with higher levels of distress and poorer quality of life among patients [22][23][24]. Studies of women with gynecologic cancer in particular suggest that this issue could be addressed with more active symptom assessment and dialogue on management strategies by healthcare providers; ovarian cancer patients who discuss their symptoms with a healthcare provider and receive recommendations have higher perceived control over symptoms than women who do not [23].…”

“…This reduced distress and restored patients' sense of control. Such findings are consistent with existing literature on the value of concordance between oncology patients and providers [22][23][24]. Discrepancies between patients' reported symptom burden and their physicians' estimation of them are common and associated with higher levels of distress and poorer quality of life among patients [22][23][24].…”

“…Even with an SMS program designed to help facilitate the transition to end-of-life, many patients in our study still held unrealistic expectations of their prognosis. Similar trends have been identified in surveys, which show that terminal cancer patients overestimate survival relative to oncologists [24,28]. While this could be viewed as a self-management or coping strategy used by patients [11], other studies suggests that inadequate patient-physician communication may play a role: 89% of patients are unaware of the discordance with their physician, and 70% report specific preferences for end-of-life care that would require an understanding of when death was approaching [29].…”

“…Participants described instances where they were able to avoid emergency department visits or receive home care due to program facilitation. Another study by our group demonstrated that patients spent fewer days in hospital after MBO program adoption: their mean cumulative length of stay during the first 60 days after MBO diagnosis was shorter post-implementation (13 days [95% CI 10-16] vs. 22 days [18][19][20][21][22][23][24][25][26]; p = 0.006; adjusted for age, histology, platinum sensitivity, surgery) [12]. Literature reviews have shown that SMS may reduce health service utilization for non-malignant chronic diseases, but effect sizes were small and confined to cardiorespiratory conditions [27].…”

Opportunity Costs of Receiving Palliative Chemotherapy for Metastatic Pancreatic Ductal Adenocarcinoma

“…Patients who are adequately prepared for potential toxicities associated with cancer treatment are more satisfied with their care 10 and report improved psychological outcomes. 11 Therefore, understanding the patient experience, including the total outpatient time receiving care, is essential to guide informed consent and identify deficiencies in cancer care delivery. This knowledge is particularly important for patients with metastatic pancreatic cancer receiving palliative chemotherapy, as the expected overall survival is a mere 6-11 months.…”