Patient-Provider Communication, Decision-Making, and Psychosocial Burdens in Palliative Radiotherapy: A Qualitative Study on Patients’ Perspectives

Author(s):  
Jie Jane Chen ◽  
Claudia S. Roldan ◽  
Alexandra N. Nichipor ◽  
Tracy A. Balboni ◽  
Monica S. Krishnan ◽  
...  
2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 24-24
Author(s):  
Jie Jane Chen ◽  
Claudia Sofia Roldan ◽  
Alexandra N. Nichipor ◽  
Tracy A. Balboni ◽  
Monica Shalini Krishnan ◽  
...  

24 Background: Patient-provider communication may impact patient satisfaction and engagement in decision-making. We aimed to understand patient preferences on radiation therapy (RT) discussions and to identify how to better communicate RT information. Methods: We conducted semi-structured interviews with 17 patients receiving palliative RT for lung or bone metastases at a single institution from 9/2016 to 10/2018. Patients’ answers about RT decision-making and communication were transcribed verbatim and analyzed qualitatively. We reviewed patients’ medical records to obtain demographic and clinical data. Results: The median age of patients was 64 years (range: 21-82). Most patients had metastatic cancer at diagnosis (53%) and had received prior palliative chemotherapy (71%) or RT (88%). The most common palliative RT course was 30 Gy in 10 fractions. Themes that impacted patients’ decisions to proceed with RT included trust in physicians (41%), desire to minimize pain or improve quality of life (35%), and a perceived lack of alternatives (35%). Most patients (76%) described the RT decision-making process as straightforward or logical. All patients reported receiving information from a physician on reasons to consider RT, while only 53% recalled discussions on reasons not to consider RT. Nearly all patients (88%) preferred shared patient-provider decision-making regarding cancer treatment; two patients (12%) preferred to be the main decision-maker. When discussing technical aspects of RT, 65% of patients reported that providers shared information on intensity of RT and number of treatments. Although 82% of patients reported that the provider was the sole decision-maker for the intensity of RT or number of treatments, all patients were satisfied and would not have wanted to be more involved in this decision. Conclusions: Trust in physicians, desire to minimize pain, and perceived lack of alternatives impact patients’ decisions to proceed with RT. Patients were more likely to remember physicians discussing reasons for RT as opposed to reasons not to consider RT. Most patients prefer shared decision-making regarding cancer treatment initiation but prefer physicians to make the decisions regarding RT treatment intensity.


Author(s):  
Jie Jane Chen ◽  
Claudia Roldan ◽  
Alexandra Nichipor ◽  
Tracy Balboni ◽  
Monica Krishnan ◽  
...  

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9072-9072
Author(s):  
S. Hitchcock-Bryan ◽  
B. Hoffner ◽  
S. Joffe ◽  
M. Powell ◽  
C. Parker ◽  
...  

9072 Background: In an effort to improve the informed consent process for subjects considering participation in a clinical trial, we created an educational video: “Entering a Clinical Trial: Is it Right for You?” In this randomized study, we assessed the effect of the video on patients’ understanding and perceptions of clinical trials. We also assessed patient satisfaction with the video and how the video impacted decision-making and patient-provider communication. Methods: We recruited 90 adults considering cancer clinical trials of whom 77 participated. After discussing the trial with the physician and reading the trial consent form, patients were randomized to receive (n=38) or not receive (n=39) the study video. Using a validated questionnaire, we interviewed subjects to assess objective understanding of the trial, our primary endpoint, and self-reported understanding of clinical trials. All subjects completed a second interview assessing secondary endpoints, including patient-provider communication, satisfaction with video, and decision-making. We used linear regression (two-sided tests) to conduct the primary analysis and the Wilcoxon rank-sum test and descriptive statistics to analyze the secondary aims. Results: Neither objective nor self-reported understanding of clinical trials differed between the two groups (Mean 86.5 vs. 87, p=0.75). 85% (61/72) indicated the video was an important source of information about clinical trials; 89% of those who watched the video with their family/friends (n=37) said the video helped loved ones better understand clinical trials; 73% indicated it helped their family accept their decision about participation. 81% (58/72) felt better prepared to discuss the trial with their physician after watching the video. Of those who found the video helpful with decision- making, 80% (21/26) were considering a trial for the first time compared with 19% (5/26) veterans who had previously participated in a clinical trial. Conclusions: The video did not measurably improve subjects’ understanding of their clinical trials. However, subjects reported that the video was an important source of information, helped them educate their families, and enhanced patient-provider communication. No significant financial relationships to disclose.


2017 ◽  
Vol 23 (2) ◽  
pp. 129-143 ◽  
Author(s):  
Emily A. Hurley ◽  
Steven A. Harvey ◽  
Peter J. Winch ◽  
Mariam Keita ◽  
Debra L. Roter ◽  
...  

2020 ◽  
Author(s):  
Adalberto Loyola-Sanchez ◽  
Ingris Pelaez-Ballestas ◽  
Lynden Crowshoe ◽  
Diane Lacaille ◽  
Rita Henderson ◽  
...  

Abstract Background Arthritis is a highly prevalent disease and leading cause of disability in the Indigenous population. A novel model of care consisting of a rheumatology outreach clinic in an on-reserve primary healthcare center has provided service to an Indigenous community in Southern Alberta since 2010. Despite quality assessments suggesting this model of care improves accessibility and is effective in meeting treatment targets, substantial improvements in patient-reported outcomes have not been realized. Therefore, the objective of this study was to explore the experiences of Indigenous persons with arthritis and healthcare providers involved in this model of care to inform the development of health service improvements that enhance patient outcomes.Methods This was a narrative-based qualitative study involving a purposeful sample of 32 individuals involved in the Indigenous rheumatology model of care. Semi-structured in-depth interviews were conducted to elicit experiences with the existing model of care and to encourage reflections on opportunities to improve it. A two-stage analysis was conducted. The first stage aimed to produce a narrative synthesis of sensitizing concepts through a dialogical method comparing people with arthritis and health providers’ narratives. The second stage involved a collective effort to crystalize these sensitizing concepts in specific recommendations to improve the quality of the current model of care. Triangulation, through participant checking and discussion among researchers, was used to increase the validity of the final recommendations.Results Ten Indigenous people with arthritis lived experience, 14 health providers and 8 administrative staff were interviewed. One main overarching theme was identified, which reflected the need to provide services that improve people’s functioning. Further, the following specific recommendations were identified: 1) enhancing patient-provider communication, 2) improving the continuity of the healthcare service, 3) increasing community awareness about the presence and negative impact of arthritis, and 4) increasing peer connections and support among people living with arthritis.Conclusions Improving the quality of the current Indigenous rheumatology model of care requires implementing strategies that improve functioning, patient-provider communication, continuity of care, community awareness and peer support. A community facilitator in a role of a patient navigator could facilitate the implementation of these strategies.


2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Adalberto Loyola-Sanchez ◽  
Ingris Pelaez-Ballestas ◽  
Lynden Crowshoe ◽  
Diane Lacaille ◽  
Rita Henderson ◽  
...  

Abstract Background Arthritis is a highly prevalent disease and leading cause of disability in the Indigenous population. A novel model of care consisting of a rheumatology outreach clinic in an on-reserve primary healthcare center has provided service to an Indigenous community in Southern Alberta since 2010. Despite quality assessments suggesting this model of care improves accessibility and is effective in meeting treatment targets, substantial improvements in patient-reported outcomes have not been realized. Therefore, the objective of this study was to explore the experiences of Indigenous persons with arthritis and healthcare providers involved in this model of care to inform the development of health service improvements that enhance patient outcomes. Methods This was a narrative-based qualitative study involving a purposeful sample of 32 individuals involved in the Indigenous rheumatology model of care. In-depth interviews were conducted to elicit experiences with the existing model of care and to encourage reflections on opportunities to improve it. A two-stage analysis was conducted. The first stage aimed to produce a narrative synthesis of concepts through a dialogical method comparing people with arthritis and health providers’ narratives. The second stage involved a collective effort to synthesize concepts and propose specific recommendations to improve the quality of the current model of care. Triangulation, through participant checking and discussion among researchers, was used to increase the validity of the final recommendations. Results Ten Indigenous people with arthritis lived experience, 14 health providers and 8 administrative staff were interviewed. One main overarching theme was identified, which reflected the need to provide services that improve people’s physical and mental functioning. Further, the following specific recommendations were identified: 1) enhancing patient-provider communication, 2) improving the continuity of the healthcare service, 3) increasing community awareness about the presence and negative impact of arthritis, and 4) increasing peer connections and support among people living with arthritis. Conclusions Improving the quality of the current Indigenous rheumatology model of care requires implementing strategies that improve functioning, patient-provider communication, continuity of care, community awareness and peer support. A community-based provider who supports people while navigating health services could facilitate the implementation of these strategies.


2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 156-156
Author(s):  
Kea Turner ◽  
Cleo A. Samuel ◽  
Heidi AS Donovan ◽  
G J. Van Londen

156 Background: Adjuvant endocrine therapy (AET)-related symptom management (SM) among breast cancer survivors (BCS) is greatly influenced by the quality of patient-provider communication; yet, few studies have examined provider perspectives on patient-provider communication and decision-making for AET-related SM. We assessed provider perspectives on AET-related SM to identify challenges and opportunities for improvement in patient-provider communication and decision-making. Methods: We conducted 3 focus groups (FGs) with a multidisciplinary group of health care providers (n = [6] physician; n = [7] non-physician) experienced in caring for BCS undergoing AET. We utilized semi-structured discussion guides to elicit provider perspectives on patient-provider communication and decision-making for AET-related SM as well as recommendations for improvement. All FGs were held at the University of Pittsburgh, audiotaped, and transcribed. We analyzed FG transcripts using qualitative software to identify key themes. Results: Providers described multiple challenges to patient-provider communication and decision-making for AET-related SM. Providers reported that BCS are often uncertain whether their symptoms are related to AET and unsure of whom to speak with about their symptoms. Providers also felt that patients are reluctant to bring up symptoms for fear that bringing up symptoms would detract from their care. Providers agreed that patient-provider communication influences BCS’ awareness and beliefs about SM. Providers indicated that provider communication strategies such as probing for symptoms, setting realistic treatment expectations, and assessing patient satisfaction with their SM plan enhances patient decision-making about AET-related SM. Conclusions: Although providers identified several challenges related to patient-provider communication and decision-making, many of these challenges are amenable to change through provider-level interventions. Future efforts aimed at improving AET-related SM should include strategies that address patient-provider communication and decision-making.


2020 ◽  
Vol 5 (4) ◽  
pp. 2473011420S0005
Author(s):  
Aoife MacMahon ◽  
Elizabeth Cody ◽  
Kristin C. Caolo ◽  
Jensen K. Henry ◽  
Mark C. Drakos ◽  
...  

Category: Other Introduction/Purpose: Aligning patient and surgeon expectations is important, as it allows for informed and shared decision- making and may improve postoperative satisfaction. Patient-provider communication factors have been found to affect differences between patient and surgeon expectations of total knee arthroplasty. Patients with limited health literacy have been found to ask fewer questions and spend less time with their surgeons, and to perceive themselves to have a more passive decision-making role in hand surgery clinic visits. Understanding how these factors affect differences in expectations of foot and ankle surgery is important in order to increase patient-surgeon agreement. This study aimed to assess associations between patient-reported physical and mental status, patient-surgeon communication factors, and musculoskeletal health literacy with differences between patient and surgeon expectations of foot and ankle surgery. Methods: Two hundred two patients scheduled to undergo foot or ankle surgery by one of seven fellowship-trained foot and ankle surgeons at an academic hospital were enrolled. Preoperatively, patients and surgeons completed the Hospital for Special Surgery Foot & Ankle Surgery Expectations Survey independently. Patients also completed Patient-Reported Outcomes Measurement Information System (PROMIS) scores in Physical Function, Pain Interference, Pain Intensity, Depression, and Global Health. Patient involvement in care, provider partnership building, and provider information giving were assessed with the modified Patients’ Perceived Involvement in Care Scale (PICS). Musculoskeletal health literacy was assessed with the Literacy in Musculoskeletal Problems (LiMP) questionnaire. A score >= 6 reflects adequate musculoskeletal literacy and a score < 6 reflects limited musculoskeletal literacy. Associations between scores and differences between patient and surgeon expectations were assessed with Pearson Correlation coefficients. Associations between musculoskeletal health literacy and differences were assessed with Student’s t-tests and Mann Whitney U tests. Results: Greater differences in patient and surgeon overall expectations scores were associated with worse PROMIS scores in Physical Function (p = 0.003), Pain Interference (p = 0.001), Pain Intensity (p = 0.009), Global Physical Health (p < 0.001), and Depression (p = 0.009). A greater difference in the number of expectations between patients and surgeons was associated with all of the above (p <= 0.003) and with worse Global Mental Health (p = 0.003). Patient perceptions of higher surgeons’ partnership building were associated with a greater number of patient than surgeon expectations (r = 0.170, p = 0.017) (Table 1). There were no associations found between LiMP scores or adequate/limited musculoskeletal literacy and differences in expectations (p >= 0.155). Conclusion: Worse baseline patient physical and mental status and higher patient perceptions of provider partnership building were associated with greater patient to surgeon differences in expectations of foot and ankle surgery. It may be beneficial for surgeons to set more realistic expectations with patients who have greater disability and in those whom they have stronger partnerships with in order to increase agreement in expectations. Further studies are warranted to understand how modifications in patient and surgeon interactions affect agreement in their expectations of foot and ankle surgery, and whether musculoskeletal literacy affects these interactions. [Table: see text]


Sign in / Sign up

Export Citation Format

Share Document