scholarly journals Interpretation of Renal Quality of Life Profile scores in routine clinical practice: an aid to treatment decision-making

2015 ◽  
Vol 25 (7) ◽  
pp. 1697-1702 ◽  
Author(s):  
Nadine Aawar ◽  
Richard Moore ◽  
Stephen Riley ◽  
Sam Salek
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.


2021 ◽  
Author(s):  
Fernando A. Angarita ◽  
Ethan Hoppe ◽  
Gary Ko ◽  
Justin Lee ◽  
Danny Vesprini ◽  
...  

Abstract Purpose: Limited data exists about why older women (≥70 years old) with breast cancer avoid surgery. This study aimed to identify physician- and patient-perceived attitudes that influence the decision to avoid surgery among older women with invasive breast cancer.Methods: Semi-structured in-depth interviews were conducted with multidisciplinary breast cancer specialists and with older women with breast cancer who declined surgery. Transcripts were iteratively coded using a theoretical framework to guide identification of common themes. Thematic comparison was performed between patients and physicians. Results: Ten breast cancer specialists and eleven patients participated. Physicians believed older women declined surgery because they did not perceive their breast cancer as a life-threatening ailment compared to other medical comorbidities. Physicians did not discuss breast reconstruction, as it was perceived to be unimportant. Treatment side effects, length of treatment, impact on quality of life, and minimal survival benefit strongly influenced a patient’s decision to decline surgery. Patients valued independence and quality of life over quantity of life. Patients felt empowered to participate in the decision-making process but appreciated having support. Both groups had congruent beliefs with respect to age impacting treatment decision, cosmesis playing a minor factor in treatment decisions, and importance of quality of life; however, they were discordant in their perceptions about the amount of support that patients have from their families.Conclusion: The decision to avoid surgery in older women stems from a variety of individual beliefs. Acknowledging patient values early in treatment planning may facilitate a patient-centered approach to treatment decision making.


Cancer ◽  
2013 ◽  
Vol 119 (12) ◽  
pp. 2342-2349 ◽  
Author(s):  
Pamela J. Atherton ◽  
Tenbroeck Smith ◽  
Jasvinder A. Singh ◽  
Jef Huntington ◽  
Brent B. Diekmann ◽  
...  

2009 ◽  
Vol 15 (1) ◽  
pp. 96-104 ◽  
Author(s):  
S Köpke ◽  
J Kasper ◽  
I Mühlhauser ◽  
M Nübling ◽  
C Heesen

Background Contrary to strong recommendations for high-dose intravenous corticosteroid treatment for relapses in multiple sclerosis (MS), uncertainty remains about most aspects of relapse management. Oral corticosteroids administered by physicians or patients themselves or no corticosteroids also appear justifiable. Objective To evaluate an education program that aims to involve patients with MS in decisions on relapse management. Methods In three German MS centers, 150 patients with relapsing MS were randomly assigned to a single, 4-h group session or a standard information leaflet. The primary outcome measure was the proportion of relapses with oral or no corticosteroid therapy as an indicator of patient autonomy in treatment decision making. Other outcomes included perceived decision autonomy, quality of life, and disability status. Results In the intervention group (IG), 108/139 (78%) relapses were treated with oral or no corticosteroids compared with 101/179 (56%) in the control group; P < 0.0001. Patients’ perceived autonomy of treatment decision making was significantly higher in the IG; P < 0.0001. Quality of life, disability status, and adverse events of corticosteroid therapies were comparable. Conclusion The patient education program led to more autonomous decision making in patients with relapsing MS. Relevant changes in relapse management were observed.


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