scholarly journals Has the Quality of Patient–Provider Communication About Survivorship Care Improved?

2019 ◽  
Vol 15 (11) ◽  
pp. e916-e924 ◽  
Author(s):  
Ashish Rai ◽  
Neetu Chawla ◽  
Xuesong Han ◽  
Sun Hee Rim ◽  
Tenbroeck Smith ◽  
...  
Keyword(s):  
Medical Expenditure Panel Survey ◽  
Social Needs ◽  
Medical Expenditure ◽  
Provider Communication ◽  
Survivorship Care ◽  
Cancer Treatments ◽  
Targeted Interventions ◽  
Patient Provider Communication

PURPOSE: The aim of the current study was to assess whether the quality of patient–provider communication on key elements of cancer survivorship care changed between 2011 and 2016. METHODS: Participating survivors completed the 2011 or 2016 Medical Expenditure Panel Survey Experiences with Cancer Surveys (N = 2,266). Participants reported whether any clinician ever discussed different aspects of survivorship care. Responses ranged from “Did not discuss at all” to “Discussed it with me in detail”. Distributions of responses were compared among all respondents and only among those who had received cancer-directed treatment within 3 years of the survey. RESULTS: In 2011, the percentage of survivors who did not receive detailed instructions on follow-up care, late or long-term adverse effects, lifestyle recommendations, and emotional or social needs were 35.1% (95% CI, 31.9% to 38.4%), 54.2% (95% CI, 50.7% to 57.6%), 58.9% (95% CI, 55.3% to 62.5%), and 69.2% (95% CI, 65.9% to 72.3%), respectively, and the corresponding proportions for 2016 were 35.4% (95% CI, 31.9% to 37.8%), 55.5% (95% CI, 51.7% to 59.3%), 57.8% (95% CI, 54.2% to 61.2%), and 68.2% (95% CI, 64.3% to 71.8%), respectively. Findings were similar among recently treated respondents. Only 24% in 2011 and 22% in 2016 reported having detailed discussions about all four topics. In 2016, 47.6% of patients (95% CI, 43.8% to 51.4%) reported not having detailed discussions with their providers about a summary of their cancer treatments. CONCLUSION: Clear gaps in the quality of communication between survivors of cancer and providers persist. Our results highlight the need for continued efforts to improve communication between survivors of cancer and providers, including targeted interventions in key survivorship care areas.

scholarly journals Quality of Patient-Provider Communication Among Cancer Survivors: Findings From a Nationally Representative Sample

2016 ◽  
Vol 12 (12) ◽  
pp. e964-e973 ◽  
Author(s):  
Neetu Chawla ◽  
Danielle Blanch-Hartigan ◽  
Katherine S. Virgo ◽  
Donatus U. Ekwueme ◽  
Xuesong Han ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Social Needs ◽  
Provider Communication ◽  
Communication Quality ◽  
Follow Up Care ◽  
Patient Provider Communication ◽  
Lifestyle Recommendations

Purpose: Although patient-provider communication is an essential component of health care delivery, little is known about the quality of these discussions among patients with cancer. Methods: Data are from the 2011 Medical Expenditure Panel Survey Experiences with Cancer survey among 1,202 adult cancer survivors. We evaluated discussions with any provider after a cancer diagnosis about: (1) follow-up care; (2) late or long-term treatment effects; (3) lifestyle recommendations, such as diet, exercise, and quitting smoking; and (4) emotional or social needs. Using a response scale ranging from “did not discuss” to “discussed in detail,” a summary score was constructed to define communication quality as high, medium, or low. Patient factors associated with the quality of provider discussions were examined using multivariable polytomous logistic regression analyses. Results: At the time of the survey, approximately one half of the patients (46%) were either within 1 year (24.1%) or between 1 and 5 years (22.0%) of treatment. More than one third of cancer survivors reported that they did not receive detailed communication about follow-up care, and more than one half reported that they did not receive detailed communication regarding late or long-term effects, lifestyle recommendations, or emotional and social needs. Only 24% reported high-quality communication for all four elements, indicating that the vast majority experienced suboptimal communication. In multivariable analysis, survivors reporting a high communication quality with providers included those who were within 1 year of treatment, between the ages of 18 and 64 years, non-Hispanic black or other ethnicity, and married. Conclusion: Study findings demonstrate gaps in the communication quality experienced by cancer survivors in the United States and help identify survivors for targeted interventions.

Fertility and cancer: Understanding the barriers to accessing information and resources.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 116-116
Author(s):  
Aditi Narayan ◽  
Carla Bann ◽  
Katherine Treiman ◽  
Cindy Soloe
Keyword(s):  
Fertility Preservation ◽  
Cancer Diagnosis ◽  
Financial Burden ◽  
Insurance Coverage ◽  
Survivorship Care ◽  
Cancer Treatments ◽  
Survey Results ◽  
Financial Issues

116 Background: Some cancer treatments may lead to infertility in individuals diagnosed during their reproductive years. Infertility can affect a cancer survivor’s long-term quality of life by causing depression as well as reduced life satisfaction and increased anxiety. Addressing fertility concerns is a major component of survivorship care. Methods: In 2017 LIVESTRONG launched a national survey to assess whether patients are being informed about potential fertility risks due to a cancer diagnosis and/or related treatments; whether they are receiving necessary education and access to resources to make informed decisions about fertility preservation; and the financial burden of fertility preservation. A total of 1,064 people diagnosed with cancer between ages of 15-39 during 2006 to 2017 responded to the survey. Results: Seventy-nine percent of respondents said a health professional had discussed fertility issues with them, but only 51% were referred to a fertility specialist. Respondents diagnosed between 2011 and 2017 were more likely to report fertility discussions compared to those diagnosed between 2006 and 2010 (84% vs. 69%; p<.001), and to be referred to a fertility specialist (58% vs. 33%, p <.0001). More educated respondents and those with health insurance at time of diagnosis were more likely to report fertility discussions than those who did not (96% vs. 85%; p=.04). The most frequently discussed topics were possible risks to fertility (89%), methods of fertility preservation (70%), whether the respondent wanted any/or more children (64%), and timing for fertility preservation (50%). Insurance and financial issues were less frequently discussed: costs of fertility preservation (37%), insurance coverage (26%), and financial assistance (30%). Forty-four percent did not take steps to preserve their fertility. Conclusions: Many respondents reported not preserving fertility before treatment because they were not referred to a fertility specialist (30%) or insurance did not cover the costs (20%). All patients diagnosed in their reproductive years should be informed of infertility risks and receive information/resources on preservation options, regardless of education, income level, and insurance status.

scholarly journals Racial and Ethnic Disparities in Patient-Provider Communication With Breast Cancer Patients: Evidence From 2011 MEPS and Experiences With Cancer Supplement

2017 ◽  
Vol 54 ◽  
pp. 004695801772710 ◽  
Author(s):  
Shelley I. White-Means ◽  
Ahmad Reshad Osmani
Keyword(s):  
Breast Cancer ◽  
Cancer Patients ◽  
Ethnic Disparities ◽  
Medical Expenditure ◽  
Provider Communication ◽  
Breast Cancer Patients ◽  
Patient Provider Communication ◽  
Race Ethnicity ◽  
The Relationship

The current study explores racial/ethnic disparities in the quality of patient-provider communication during treatment, among breast cancer patients. A unique data set, Medical Expenditure Panel Survey and Experiences With Cancer Supplement 2011, is used to examine this topic. Using measures of the quality of patient-provider communication that patients are best qualified to evaluate, we explore the relationship between race/ethnicity and patients’ perspectives on whether (1) patient-provider interactions are respectful, (2) providers are listening to patients, (3) providers provide adequate explanations of outcomes and treatment, and (4) providers spend adequate time in interacting with the patients. We also examine the relationship between race/ethnicity and patients’ perspectives on whether their (1) doctor ever discussed need for regular follow-up care and monitoring after completing treatment, (2) doctor ever discussed long-term side effects of cancer treatment, (3) doctor ever discussed emotional or social needs related to cancer, and (4) doctor ever discussed lifestyle or health recommendations. Multivariate ordinary least squares and ordered logistic regression models indicate that after controlling for factors such as income and health insurance coverage, the quality of patient-provider communication with breast cancer patients varies by race/ethnicity. Non-Hispanic blacks experience the greatest communication deficit. Our findings can inform the content of future strategies to reduce disparities.

scholarly journals Identifying unmet needs in long-term stroke care using in-depth assessment and the Post-Stroke Checklist – The Managing Aftercare for Stroke (MAS-I) study

2018 ◽  
Vol 3 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Benjamin Hotter ◽  
Inken Padberg ◽  
Andrea Liebenau ◽  
Petra Knispel ◽  
Sabine Heel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Community Dwelling ◽  
Social Needs ◽  
Interquartile Range ◽  
Stroke Patients ◽  
Post Stroke

Introduction Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. Methods We invited long-term stroke patients from two previous acute clinical studies ( n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. Results Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4–12.75) consented to assessment (median 41 months (interquartile range 36–50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1–3), EuroQoL index value was 0.81 (median; interquartile range 0.70–1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity ( p = 0.008) and social needs ( p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood ( p < 0.001), impaired cognition ( p = 0.015), social needs ( p = 0.005) and caregiver burden ( p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). Conclusion These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted. Clinical Trial Registration: clinicaltrials.gov NCT02320994.

Young-onset colorectal cancer treatment side effects: Infertility, sexual dysfunction, and quality-of-life outcomes.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 3587-3587
Author(s):  
Laura Diane Porter ◽  
Ronit Yarden ◽  
Kim Lynn Newcomer ◽  
Negeen Fathi ◽  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Side Effects ◽  
Sexual Dysfunction ◽  
Cancer Patients ◽  
Fertility Preservation ◽  
Cancer Treatments ◽  
Young Onset

3587 Background: Colorectal cancer is the third-most commonly diagnosed cancer and the second-leading cause of cancer death in men and women combined in the United States. Young-onset colorectal cancer refers to individuals diagnosed under the age of 50. In recent years, the incidence has increased by 2.2% annually in individuals younger than 50 years and 1% in individuals 50-64, in contrast to a 3.3% decrease in adults 65 years and older. Young-onset (YO) CRC patients and survivors face unique clinical challenges with fertility and sexual dysfunctions, but this risk is not well quantified. There is limited data and public discussion on the long-term effects of colorectal cancer treatments on fertility and sexual dysfunction and the long-term impact on the quality of life. Methods: To explore the unique challenges and unmet needs of the young-adult patient population, a cross-sectional study was conducted. Colorectal cancer patients and survivors (N = 884) diagnosed between the ages of 20 to 50 years old (median age 42 ± 7.0) completed an online questionnaire based on established instruments EORTC-QOL-30, EORTC-CR-29, and EORTC-SHC-22. Results: Thirty-one percent of respondents stated that a medical professional spoke to them about fertility preservation at the time of diagnosis and during treatment. Only 31% were referred to a reproductive endocrinologist, even though 37% of women and 16% of men reported that treatment left them infertile or sterile. Among survey respondents, 12% of women had an egg retrieval procedure, and 36% of men had their sperm preserved prior to the start of treatment. Fifty-three percent of women reported treatment led to premature menopause. Sixty-five percent of respondents suffer from some level of sexual dysfunction due to treatment. In patients who received radiation therapy, women were 12% less likely than men to have discussed sexual side effects with the provider before treatment. Patients who have an ostomy reported more severe sexual dysfunction (17.8%). Rectal cancer patients were 2.5 times more likely than those with colon cancer to report severe dysfunction after their treatment. More than 25% of the respondents said they would have considered alternative treatment if they would have known the risks of sexual dysfunction. Conclusions: Our survey demonstrates inadequate communications between patients and providers about the irreversible fertility and sexual effects of colorectal cancer treatments. Younger patients and survivors face unique long-term challenges and require further information about fertility preservation options and emotional support regarding their sexuality post-treatment. Other studies are needed to assess the physical and psychological side effects endured by young-onset CRC patients and survivors.

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