QOLP-01. EXPERIENCES FROM PATIENT, CAREGIVER, AND PHYSICIAN SURVEYS ON DIAGNOSIS AND TREATMENT OF BRAIN METASTASES

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi182-vi182
Author(s):  
Albert Kim ◽  
Gi-Ming Wang ◽  
Kristin Waite ◽  
Scott Elder ◽  
Avery Fine ◽  
...  

Abstract The development of brain metastases (BM) is one of the most feared complications of cancer due to the substantial neuro-cognitive morbidity and grim prognosis. In the past decade, targeted therapies and checkpoint inhibitors have demonstrated remarkable intracranial response rates for tumors of multiple histologies. As overall survival for these patients improves, there is a growing need to identify issues surrounding patient survivorship and to standardize physician practice patterns for these patients. To date, there has not been an adequate study to specifically explore these questions of survivorship and practice standardization for patients with advanced cancer and BM. Here, we present results from a cross-sectional survey in which we analyze responses from 237 patients, 209 caregivers, and 239 physicians to identify areas of improvement in the clinical care of BM. In comparing physician and patient/caregiver responses, we found a disparity in the perceived discussion of topics pertaining to important aspects of BM clinical care. We identified variability in practice patterns for this patient population between private practice and academic physicians. Many physicians continue to have patients with BM excluded from clinical trials. Finally, we obtained patient/physician recommendations on high-yield areas for federal funding to improve patient quality of life. Therefore, by identifying potential areas of unmet need, we anticipate this wealth of actionable information will translate into tangible benefits for both patients and caregivers. Future studies are needed to validate our findings.

2021 ◽  
Author(s):  
Albert E Kim ◽  
Gi-Ming Wang ◽  
Kristin A Waite ◽  
Scott Elder ◽  
Avery Fine ◽  
...  

Abstract Background The development of brain metastases (BM) is one of the most feared complications of cancer due to the substantial neuro-cognitive morbidity and grim prognosis. In the past decade, targeted therapies and checkpoint inhibitors have demonstrated promising intracranial response rates for tumors of multiple histologies. As overall survival for these patients improves, there is a growing need to identify issues surrounding patient survivorship and to standardize physician practice patterns for these patients. To date, there has not been an adequate study to specifically explore these questions of survivorship and practice standardization for patients with advanced cancer and BM. Methods Here, we present results from a cross-sectional survey in which we analyze responses from 237 patients, 209 caregivers, and 239 physicians to identify areas of improvement in the clinical care of BM. Results In comparing physician and patient/caregiver responses, we found a disparity in the perceived discussion of topics pertaining to important aspects of BM clinical care. We identified variability in practice patterns for this patient population between private practice and academic physicians. Many physicians continue to have patients with BM excluded from clinical trials. Finally, we obtained patient/physician recommendations on high-yield areas for federal funding to improve patient quality of life. Conclusion By identifying potential areas of unmet need, we anticipate this wealth of actionable information will translate into tangible benefits for both patients and caregivers. Future studies are needed to validate our findings.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e14004-e14004
Author(s):  
Albert Eusik Kim ◽  
GI-Ming WANG ◽  
Kristin A Waite ◽  
Scott Elder ◽  
Avery Fine ◽  
...  

e14004 Background: Brain metastases (BM) is one of the most feared complications of cancer due to substantial neurologic sequalae, neuro-cognitive morbidity and grim prognosis. In the past decade, targeted therapies and checkpoint inhibitors have resulted in meaningfully improved overall survival for a minority of these patients. Accordingly, there is a growing need to identify issues surrounding patient survivorship and to standardize physician practice patterns for these patients. To date, there has not been a well-conducted formal study to specifically explore these questions of survivorship and practice standardization for BM patients. Methods: Here, we present results from a cross-sectional survey in which we analyzed responses from 237 BM patients, 209 caregivers, and 239 physicians. Surveys contained questions about BM symptoms, discussion of BM diagnosis by the clinician, psychosocial concerns, available treatment options for BM, BM patient advocacy resources, and BM-specific clinical trials. Results: Our survey revealed compelling findings about current care of BM patients. There were discrepancies in the perceived discussion of the implications of the diagnosis of BM, from the patient/caregiver and physician perspective. Important topics, such as prognosis and worrisome symptoms, were felt to have been discussed more frequently by physicians than by patients or caregivers. In our physician survey, private practice physicians, compared to academic physicians, were significantly more likely to recommend whole brain radiotherapy (61.1 vs 39.7%; p = 0.009). Participation in a clinical trial was one of the least recommended treatment options. Many physicians (59.1% private; 71.9% academic) stated that BM patients in their care are denied participation in a clinical trial, specifically due to the presence of BM. The consensus among physicians, patients and caregivers was that the highest yield area for federal assistance is increased treatment and research funding for BM. Conclusions: Our hope is that these findings will serve as a basis for future quality improvement measures to enhance patient-physician communication and patient well-being, continuing medical education activities detailing latest advances in BM for oncologists, and lobbying efforts to the federal government in prioritizing BM research, clinical trials, and patient survivorship.


2019 ◽  
Vol 28 (5) ◽  
pp. S14-S19 ◽  
Author(s):  
Thomas Nichols ◽  
Jimena Goldstine ◽  
Gary Inglese

Background: irritation to peristomal skin remains one of the most prevalent ostomy-related complications influencing an individual's health status and quality of life. Aims: to assess the impact of damaged peristomal skin on the health utility and quality-adjusted life days (QALD) in an international adult ostomy population. Methods: a cross-sectional survey incorporating the SF-6D preference-based health utility index was developed to assess a random selection of post-surgical patients. Findings: health utility decreased with increasing skin irritation among the three geographic groups. The total mean health utility of normal peristomal skin for the three groups dropped incrementally for mild, moderate, and severe irritation. There were no differences in health utility or QALDs between the three country groups. Conclusion: improvement of peristomal skin health is associated with improvements to QALDs. Clinicians, caregivers and patients have the responsibility to address a critical unmet need in skin health through interventions and products designed to support healthy peristomal skin.


2021 ◽  
Author(s):  
Tara Kiran ◽  
Ri Wang ◽  
Curtis Handford ◽  
Nadine Laraya ◽  
Azza Eissa ◽  
...  

Objective: To determine the extent to which family physicians closed their doors altogether or for in-person visits during the pandemic, their future practice intentions, and related factors. Methods: Between March and June 2021, we conducted a cross-sectional survey using email, fax, and phone of 1,186 family doctors practicing comprehensive family medicine in Toronto, Ontario. We asked about practice patterns in January 2021, use of virtual care, and practice intentions. Results: Of the 1,016 (86%) that responded to the survey, 99.7% (1001/1004) indicated their practice was open in January 2021 with 94.8% (928/979) seeing patients in-person and 30.8% (264/856) providing in-person care to patients reporting COVID-19 symptoms. Respondents estimated spending 58.2% of clinical care time on phone visits and an additional 5.8% on video and 7.5% on email. 17.2% (77/447) were planning to close their current practice in the next five years. There was a higher proportion of physicians who worked alone in a clinic among those who did not see patients in-person (27.6% no vs 12.4% yes, p<0.05), did not see symptomatic patients (15.6% no vs 6.5 % yes, p<0.001), and those who planned to close their practice in the next 5 years (28.9% yes vs 13.9% no, p<0.01). Interpretation: The vast majority of family physicians in Toronto were open to in-person care in January 2021 but almost one-fifth are considering closing their practice in the next five years. Policy-makers need to prepare for a growing family physician shortage and better understand factors that support recruitment and retention.


10.2196/25792 ◽  
2022 ◽  
Vol 24 (1) ◽  
pp. e25792
Author(s):  
Ophélie Wilczynski ◽  
Anthony Boisbouvier ◽  
Lise Radoszycki ◽  
François-Emery Cotté ◽  
Anne-Françoise Gaudin ◽  
...  

Background New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. Conclusions With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.


Author(s):  
Shwetha N Chandranna ◽  
Ratthiga Balagopal ◽  
Santosh Achappa ◽  
Kaushal Kumar

Introduction: Vernal Keratoconjunctivitis (VKC) is a common chronic allergic condition mostly affecting children and their childhood. At present, the choice of medication varies greatly for the same severity of disease from one ophthalmologist to another. A standardised grading system and a comprehensive approach towards VKC including Quality of Life (QOL) assessment is the need of the hour. Aim: To learn the practice patterns and perspectives of Indian Ophthalmologists in the management of VKC and to propose strategies for the holistic approach. Materials and Methods: A cross-sectional survey was conducted in July 2020. A semi-structured questionnaire was sent via Google form to 200 ophthalmologists. Statistical analysis used: Data was entered in excel and analysis was performed using the Statistical Package of Social Sciences (SPSS) software version 20. Results: Out of 200 ophthalmologists, 146 (73%) participated in the survey. Among the participants, 43.8% used combination therapy in the management of VKC and 68.5% resorted to steroid therapy in severe cases. Tacrolimus (0.03%) was the most preferred immunomodulator among 56% ophthalmologists and only 11% assessed QOL in the patients periodically. Conclusion: Majority (around 2/3rd) felt immunotherapy and vitamin D supplementation can be tried in the management of VKC and there was a consensus on administering a QOL questionnaire in all patients with VKC in future which would provide holistic care.


2020 ◽  
Author(s):  
Ophélie Wilczynski ◽  
Anthony Boisbouvier ◽  
Lise Radoszycki ◽  
François-Emery Cotté ◽  
Anne-Françoise Gaudin ◽  
...  

BACKGROUND New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. OBJECTIVE This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. METHODS This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. RESULTS Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. CONCLUSIONS With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.


2019 ◽  
Vol 65 (9) ◽  
pp. 14-23 ◽  
Author(s):  
Manuel Lopez-Cano ◽  
Hobart W Harris ◽  
John P Fisher ◽  
Jose Antonio Pereira ◽  
Josep M Garcia-Alamino ◽  
...  

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