ABSTRACT
Cascade testing is an imperative process to engage Lynch syndrome patients' at-risk relatives in early cancer risk reduction interventions. How genetic counselors communicate about cascade testing is crucial to patients' intentions of and actual involvement in family communication. Based on data from 20 interviews with genetic counselors, this qualitative study examined their perceptions of barriers and facilitators of offering cascade testing to at-risk relatives and the specific communication strategies they use to discuss cascade testing with patients. We identified patient-level, genetic counselor-level, and system-level barriers and facilitators of having discussions with Lynch syndrome patients about cascade testing. The qualitative data also revealed four prominent communication strategies that genetic counselors use for such discussions: build rapport, reframe the benefits of family communication, adapt communication, and provide various resources. These findings highlight genetic counselors' needs of practical and structural support to facilitate their communication about cascade testing, especially when patients are hesitant or lack resources or skills to notify at-risk relatives about cascade testing.
ABSTRACT
PURPOSE: This exploratory study examines differences in parents' quality of life by treatment decision and the child's survival outcome in the context of life-threatening congenital heart disease (CHD). DESIGN AND METHODS: Parents of a fetus or neonate diagnosed with severe CHD enrolled in the observational control group of a clinical trial (NCT04437069) and completed quality of life (i.e., contact with clinicians, social support, partner relationship, state of mind), mental and physical health survey measures. Comparisons were made between parents who chose comfort-directed care or surgery and between those whose child did and did not survive. RESULTS: Parents who chose surgery and their child did not survive reported the most contact with their clinicians. Parents who chose comfort-directed care reported lower social support than parents who chose surgery and their child did not survive as well as poorer state of mind compared to parents who chose surgery. CONCLUSIONS: Some aspects of parents' quality of life differed based on their treatment decision. Parents who choose comfort-directed care are vulnerable to some negative outcomes. PRACTICE IMPLICATIONS: Decision support tools and bereavement resources to assist parents with making and coping with a complex treatment decision is important for clinical care.
Subject(s)
Heart Defects, Congenital , Quality of Life , Child , Humans , Infant, Newborn , Decision Making , Fetus , Heart Defects, Congenital/surgery , Heart Defects, Congenital/diagnosis , Parents , Surveys and QuestionnairesABSTRACT
BACKGROUND: Shared decision making (SDM) improves the likelihood that patients will receive care in a manner consistent with their priorities. To facilitate SDM, decision aids (DA) are commonly used, both to prepare a patient before their clinician visit, as well as to facilitate discussion during the visit. However, the relative efficacy of patient-focused or encounter-based DAs on SDM and patient outcomes remains largely unknown. We aim to directly estimate the comparative effectiveness of two DA's on SDM observed in encounters to discuss stroke prevention strategies in patients with atrial fibrillation (AF). METHODS: The study aims to recruit 1200 adult patients with non-valvular AF who qualify for anticoagulation therapy, and their clinicians who manage stroke prevention strategies, in a 2x2 cluster randomized multi-center trial at six sites. Two DA's were developed as interactive, online, non-linear tools: a patient decision aid (PDA) to be used by patients before the encounter, and an encounter decision aid (EDA) to be used by clinicians with their patients during the encounter. Patients will be randomized to PDA or usual care; clinicians will be randomized to EDA or usual care. RESULTS: Primary outcomes are quality of SDM, patient decision making, and patient knowledge. Secondary outcomes include anticoagulation choice, adherence, and clinical events. CONCLUSION: This trial is the first randomized, head-to-head comparison of the effects of an EDA versus a PDA on SDM. Our results will help to inform future SDM interventions to improve patients' AF outcomes and experiences with stroke prevention strategies.
Subject(s)
Atrial Fibrillation , Stroke , Adult , Anticoagulants/therapeutic use , Atrial Fibrillation/complications , Atrial Fibrillation/drug therapy , Decision Making , Decision Support Techniques , Humans , Patient Participation , Stroke/complications , Stroke/prevention & controlABSTRACT
BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.
Subject(s)
Heart Defects, Congenital , Quality of Life , Adult , Child , Decision Making , Female , Fetus , Heart Defects, Congenital/therapy , Humans , Infant, Newborn , Male , Parents/psychology , PregnancyABSTRACT
BACKGROUND: Women of lower socioeconomic status (SES) with early-stage breast cancer are more likely to report poorer physician-patient communication, lower satisfaction with surgery, lower involvement in decision making, and higher decision regret compared to women of higher SES. The objective of this study was to understand how to support women across socioeconomic strata in making breast cancer surgery choices. METHODS: We conducted a 3-arm (Option Grid, Picture Option Grid, and usual care), multisite, randomized controlled superiority trial with surgeon-level randomization. The Option Grid (text only) and Picture Option Grid (pictures plus text) conversation aids were evidence-based summaries of available breast cancer surgery options on paper. Decision quality (primary outcome), treatment choice, treatment intention, shared decision making (SDM), anxiety, quality of life, decision regret, and coordination of care were measured from T0 (pre-consultation) to T5 (1-year after surgery. RESULTS: Sixteen surgeons saw 571 of 622 consented patients. Patients in the Picture Option Grid arm (n = 248) had higher knowledge (immediately after the visit [T2] and 1 week after surgery or within 2 weeks of the first postoperative visit [T3]), an improved decision process (T2 and T3), lower decision regret (T3), and more SDM (observed and self-reported) compared to usual care (n = 257). Patients in the Option Grid arm (n = 66) had higher decision process scores (T2 and T3), better coordination of care (12 weeks after surgery or within 2 weeks of the second postoperative visit [T4]), and more observed SDM (during the surgical visit [T1]) compared to usual care arm. Subgroup analyses suggested that the Picture Option Grid had more impact among women of lower SES and health literacy. Neither intervention affected concordance, treatment choice, or anxiety. CONCLUSIONS: Paper-based conversation aids improved key outcomes over usual care. The Picture Option Grid had more impact among disadvantaged patients. LAY SUMMARY: The objective of this study was to understand how to help women with lower incomes or less formal education to make breast cancer surgery choices. Compared with usual care, a conversation aid with pictures and text led to higher knowledge. It improved the decision process and shared decision making (SDM) and lowered decision regret. A text-only conversation aid led to an improved decision process, more coordinated care, and higher SDM compared to usual care. The conversation aid with pictures was more helpful for women with lower income or less formal education. Conversation aids with pictures and text helped women make better breast cancer surgery choices.
Subject(s)
Breast Neoplasms/surgery , Decision Making, Shared , Adult , Aged , Communication , Decision Support Techniques , Female , Humans , Middle Aged , Patient Participation , Social ClassABSTRACT
INTRODUCTION: Regular endoscopic surveillance is the gold standard Barrett's esophagus (BE) surveillance, yet harms of surveillance for some patients may outweigh the benefits. We sought to characterize physicians' BE surveillance cessation recommendations. METHODS: We surveyed gastroenterologists about their BE surveillance recommendations varying patient age, comorbidity, and BE length. RESULTS: Clinicians varied in recommendations for repeat surveillance. Patient age showed the largest variation among decisions, whereas BE length varied the least. DISCUSSION: Age and comorbidities seem to influence BE surveillance cessation decisions, but with variation. Clear cessation guidelines balancing the risks and benefits for BE surveillance are warranted.
Subject(s)
Barrett Esophagus/pathology , Gastroenterologists , Practice Patterns, Physicians'/statistics & numerical data , Age Factors , Aged , Comorbidity , Esophagoscopy , Female , Humans , Male , Surveys and QuestionnairesABSTRACT
BACKGROUND: Mechanical bowel preparation with antibiotics is associated with decreased surgical site infections (SSI) after colorectal surgery. However, antibiotics have side effects, such as vomiting. It is unknown how patient willingness to take antibiotics is affected by side effect severity. MATERIALS AND METHODS: This was a single-center study of 86 patients (37 undergoing colorectal surgery) using a modified standard gamble technique. We presented patients with four hypothetical scenarios, holding SSI reduction constant and varying antibiotic side effect severity. Patients reported willingness to take antibiotics using a scale from 0 to 100. Patients also reported the maximum level of side effects they would accept. We examined the association between side effect severity and willingness to take antibiotics with a multivariable mixed-effects regression model and investigated differences in surgical and nonsurgical patients. RESULTS: After adjusting for age, sex, and patient type, willingness scores decreased with increasing side effect severity. No side effects: 92 (CI 86,99), mild: 83 (CI 76,90), moderate: 76 (CI 69,83), and severe: 46 (CI 38,52), P < 0.001. Surgical patients were more willing to take antibiotics at all severity levels compared with nonsurgical patients, P < 0.001. Surgical (57%) and nonsurgical (58%) patients reported that they would accept moderate side effects. Patients with prior SSI (n = 5) would take antibiotics regardless of side effect severity. CONCLUSIONS: Increasing antibiotic side effect severity is associated with decreased willingness to take antibiotics during bowel preparation, despite a reduction in SSI. Adherence may be improved with strategies that increase patient education and decrease side effects during bowel preparation.
Subject(s)
Anti-Bacterial Agents/adverse effects , Colorectal Surgery/adverse effects , Patient Preference/psychology , Surgical Wound Infection/prevention & control , Adult , Aged , Female , Humans , Male , Middle Aged , Preoperative Care , Surgical Wound Infection/etiology , Surveys and QuestionnairesABSTRACT
BACKGROUND: We aimed to identify decision process measures associated with patient decisional regret regarding the decision to pursue elective colectomy or observation for diverticulitis. MATERIALS AND METHODS: This was a single-center cross-sectional survey study. We included adult patients treated for diverticulitis between 2014 and 2019 and excluded patients who required urgent or emergent colectomy. The primary outcome was regret regarding the decision to pursue elective surgery or observation for diverticulitis, measured using the Decision Regret Scale. We used multivariable linear regression to examine hypothesized predictors of decision regret, including decisional conflict (Decision Conflict Scale and its subscales), shared decision-making, and decision role concordance. RESULTS: Of 923 eligible patients, 133 were included in the analysis. Patients had a median of five episodes of diverticulitis (interquartile range 3-8), occurring a median of 2 y (interquartile range 1-3) before survey administration. Thirty-eight patients (29%) underwent elective surgery for diverticulitis. Decision regret (Decision Regret Scale score ≥25) was present in 42 patients (32%). After controlling for surgery, gender, health status, and years since treatment, decision regret was associated with decisional conflict and inversely associated with values clarity, decision role concordance, shared decision-making, and feeling informed, supported, and effective in decision-making (all P < 0.001). CONCLUSIONS: Nearly one-third of survey respondents experienced regret regarding the decision between elective surgery and observation for diverticulitis. Decision regret may be reduced through efforts to improve patient knowledge, values clarity, role concordance, and shared decision-making.
Subject(s)
Colectomy/psychology , Decision Making , Diverticulitis/surgery , Elective Surgical Procedures/psychology , Adult , Aged , Colectomy/statistics & numerical data , Cross-Sectional Studies , Diverticulitis/psychology , Elective Surgical Procedures/statistics & numerical data , Female , Humans , Male , Middle AgedABSTRACT
BACKGROUND: Up to 30% of patients with ulcerative colitis will undergo surgery resulting in an ileal pouch-anal anastomosis (IPAA) or permanent end ileostomy (EI). We aimed to understand how patients decide between these two options. METHODS: We performed semi-structured interviews with ulcerative colitis patients who underwent surgery. Areas of questioning included the degree to which patients participated in decision-making, challenges experienced, and suggestions for improving the decision-making process. We analyzed the data using a directed content and thematic approach. RESULTS: We interviewed 16 patients ranging in age from 28 to 68 years. Nine were male, 10 underwent IPAA, and 6 underwent EI. When it came to participation in decision-making, 11 patients felt independently responsible for decision-making, 3 shared decision-making with the surgeon, and 2 experienced surgeon-led decision-making. Themes regarding challenges during decision-making included lack of support from family, lack of time to discuss options with the surgeon, and the overwhelming complexity of the decision. Themes for ways to improve decision-making included the need for additional information, the desire for peer education, and earlier consultation with a surgeon. Only 3 patients were content with the information used to decide about surgery. CONCLUSIONS: Patients with ulcerative colitis who need surgery largely experience independence when deciding between IPAA and EI, but struggle with inadequate educational information and social support. Patients may benefit from early access to surgeons and peer guidance to enhance independence in decision-making. Preoperative educational materials describing surgical complications and postoperative lifestyle could improve decision-making and facilitate discussions with loved ones.
Subject(s)
Colitis, Ulcerative , Colonic Pouches , Proctocolectomy, Restorative , Adult , Aged , Anastomosis, Surgical , Colitis, Ulcerative/surgery , Humans , Ileostomy , Male , Middle Aged , Patient Participation , Postoperative Complications , Treatment OutcomeABSTRACT
OBJECTIVE: To examine associations between sociodemographic and mental health characteristics with household risk for food insecurity during the COVID-19 outbreak. DESIGN: Cross-sectional online survey analysed using univariable tests and a multivariable logistic regression model. SETTING: The United States during the week of 30 March 2020. PARTICIPANTS: A convenience sample of 1965 American adults using Amazon's Mechanical Turk platform. Participants reporting household food insecurity prior to the pandemic were excluded from analyses. RESULTS: One thousand two hundred and fifty participants reported household food security before the COVID-19 outbreak. Among this subset, 41 % were identified as at risk for food insecurity after COVID-19, 55 % were women and 73 % were white. On a multivariable analysis, race, income, relationship status, living situation, anxiety and depression were significantly associated with an incident risk for food insecurity. Black, Asian and Hispanic/Latino respondents, respondents with an annual income <$100 000 and those living with children or others were significantly more likely to be newly at risk for food insecurity. Individuals at risk for food insecurity were 2·60 (95 % CI 1·91, 3·55) times more likely to screen positively for anxiety and 1·71 (95 % CI 1·21, 2·42) times more likely to screen positively for depression. CONCLUSIONS: An increased risk for food insecurity during the COVID-19 pandemic is common, and certain populations are particularly vulnerable. There are strong associations between being at risk for food insecurity and anxiety/depression. Interventions to increase access to healthful foods, especially among minority and low-income individuals, and ease the socioemotional effects of the outbreak are crucial to relieving the economic stress of this pandemic.
Subject(s)
COVID-19 , Food Insecurity , Pandemics , Adolescent , Adult , Aged , COVID-19/epidemiology , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Risk Factors , Socioeconomic Factors , United States/epidemiology , Young AdultABSTRACT
COVID-19 has affected the health and well-being of almost every American. The aim of this study was to examine the sustained impacts of COVID-19 prevention measures on the diet and exercise habits, risk for food insecurity, and quality of life among adults in the U.S. We conducted a longitudinal study using a convenience sample of participants recruited via Amazon's Mechanical Turk (MTurk) platform between March 30 and April 7, 2020, and 8 months into the outbreak, from November 2 to November 21, 2020. We compared self-reported diet and exercise habits and risk for food insecurity shortly after the pandemic began, in April, to those reported in November. We also measured changes in quality-of-life using the PROMIS-29 + 2 (PROPr) scale. A total of 636 respondents completed both surveys. Compared to reports in April, respondents ate lunch and dinner out more frequently in November and consumed more take-out and fast food. Weekly frequencies of consuming frozen food and the number of daily meals were slightly lower in November than they were in April. 54% of respondents screened positively for being at risk for food insecurity in April, reducing to 41% by November. In April, survey respondents were found to have lower quality-of-life relative to U.S. population norms, but by November levels of depression and cognitive function had improved. Our findings underscore how the initial effects of the pandemic on diet, exercise, risk for food insecurity, and quality of life have evolved. As U.S. states re-open, continued efforts to encourage healthy eating and support mental health, especially to reduce feelings of anxiety and social isolation, remain important to mitigate the potential long-term effects of the pandemic.
Subject(s)
COVID-19 , Quality of Life , Adult , Diet , Food Insecurity , Humans , Longitudinal Studies , Pandemics , SARS-CoV-2 , United States/epidemiologyABSTRACT
BACKGROUND AND OBJECTIVES: Little data exist on provider perspectives about counselling and shared decision-making for complex CHD, ways to support and improve the process, and barriers to effective communication. The goal of this qualitative study was to determine providers' perspectives regarding factors that are integral to shared decision-making with parents faced with complex CHD in their fetus or newborn; and barriers and facilitators to engaging in effective shared decision-making. METHODS: We conducted semi-structured interviews with providers from different areas of practice who care for fetuses and/or children with CHD. Providers were recruited from four geographically diverse centres. Interviews were recorded, transcribed, and analysed for key themes using an open coding process with a grounded theory approach. RESULTS: Interviews were conducted with 31 providers; paediatric cardiologists (n = 7) were the largest group represented, followed by nurses (n = 6) and palliative care providers (n = 5). Key barriers to communication with parents that providers identified included variability among providers themselves, factors that influenced parental comprehension or understanding, discrepant expectations, circumstantial barriers, and trust/relationship with providers. When discussing informational needs of parents, providers focused on comprehensive short- and long-term outcomes, quality of life, and breadth and depth that aligned with parental goals and needs. In discussing resources to support shared decision-making, providers emphasised the need for comprehensive, up-to-date information that was accessible to parents of varying situations and backgrounds. CONCLUSIONS: Provider perspectives on decision-making with families with CHD highlighted key communication issues, informational priorities, and components of decision support that can enhance shared decision-making.
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Identification of mutations that increase lifetime risk of breast and ovarian cancer is critical to improving women's health. Because these mutations are relatively rare in the general population, there is a need for efficient methods to identify appropriate women to undergo genetic testing. The objective of this study was to assess the feasibility, accuracy, and performance of the NCCN guideline-based Tool for Risk Assessment for breast and ovarian Cancer (N-TRAC)-a patient-facing assessment for those affected and unaffected by cancer. This study enrolled a prospective cohort of 100 affected and 100 unaffected women that used N-TRAC in a clinical setting. Recommendations for referral to genetic counseling based on N-TRAC and other standard risk assessment methods were compared.Seventy-seven of the 100 affected women and 35 of the 100 unaffected women were identified as high risk by N-TRAC. The average completion time was approximately 2 min for both groups. N-TRAC accuracy for family history was exceptional in both groups (kappa > 0.96). N-TRAC and other risk assessment methods do not always identify the same high risk population. N-TRAC is an accurate and feasible tool that can assist in identifying women at increased risk for hereditary breast and ovarian cancer and may lead to more informed decision-making.
Subject(s)
Breast Neoplasms/genetics , Genetic Predisposition to Disease , Genetic Testing/methods , Guidelines as Topic , Ovarian Neoplasms/genetics , Adult , Decision Making , Female , Genetic Counseling , Health Status , Humans , Middle Aged , Mutation , Patient Reported Outcome Measures , Prospective Studies , Referral and Consultation , Risk Assessment , Surveys and QuestionnairesABSTRACT
PURPOSE: As local therapies improve, contralateral breast cancer (CBC) risk for women with ductal carcinoma in situ (DCIS) may exceed the risk of a second ipsilateral breast cancer. We sought to determine whether estrogen-receptor (ER) status influenced CBC risk. METHODS: We identified women aged 40-79 with DCIS diagnosed between 1990 and 2002 using the Surveillance, Epidemiology, and End Results database. We used multivariable competing risk regression to examine predictors of time from index DCIS to CBC (invasive or in situ). RESULTS: Multivariable competing risk regression found ER status to be a highly significant predictor of CBC. The 10-year cumulative incidence was estimated to be 5.3% (95% CI 4.8-5.8%) among ER positive (ER+) cases and 3.3% (95% CI 2.6-4.0%) among ER negative (ER-). CONCLUSIONS: This finding suggests that ER+ DCIS may represent a field effect that confers increased propensity for developing cancer across breast tissue, regardless of laterality. In contrast, ER- DCIS may represent an isolated local event. Given that the majority of DCIS is ER+, and only a minority of DCIS patients receive hormonal therapy, consideration of ER status may influence treatment and surveillance approaches.
Subject(s)
Breast Neoplasms/epidemiology , Carcinoma, Intraductal, Noninfiltrating/epidemiology , Neoplasm Recurrence, Local/epidemiology , Receptors, Estrogen/genetics , Adult , Aged , Breast Neoplasms/genetics , Breast Neoplasms/pathology , Breast Neoplasms/surgery , Carcinoma, Intraductal, Noninfiltrating/genetics , Carcinoma, Intraductal, Noninfiltrating/pathology , Carcinoma, Intraductal, Noninfiltrating/surgery , Female , Humans , Mastectomy, Segmental , Middle Aged , Neoplasm Recurrence, Local/genetics , Neoplasm Recurrence, Local/pathology , Receptors, Progesterone/genetics , Risk FactorsABSTRACT
BACKGROUND: Decades of persuasive messages have reinforced the importance of traditional screening mammography at regular intervals. A potential new paradigm, risk-based screening, adjusts mammography frequency based on a woman's estimated breast cancer risk in order to maximize mortality reduction while minimizing false positives and overdiagnosis. Women's views of risk-based screening are unknown. OBJECTIVE: To explore women's views and personal acceptability of a potential risk-based mammography screening paradigm. DESIGN: Four semi-structured focus group discussions about screening mammography and surveys before provision of information about risk-based screening. We analyzed coded focus group transcripts using a mixed deductive (content analysis) and inductive (grounded theory) approach. PARTICIPANTS: Convenience sample of 29 women (40-74 years old) with no personal history of breast cancer recruited by print and online media in New Hampshire and Vermont. RESULTS: Twenty-seven out of 29 women reported having undergone mammography screening. All participants were white and most were highly educated. Some women accepted the idea that early cancer detection with traditional screening was beneficial-although many also reported hearing inconsistent recommendations from clinicians and mixed messages from media reports about mammography. Some women were familiar with a risk-based screening paradigm (primarily related to cervical cancer, n = 8) and thought matching screening mammography frequency to personal risk made sense (n = 8). Personal acceptability of risk-based screening was mixed. Some believed risk-based screening could reduce the harms of false positives and overdiagnosis (n = 7). Others thought screening less often might result in missing a dangerous diagnosis (n = 14). Many (n = 18) expressed concerns about the feasibility of risk-based screening and questioned whether breast cancer risk estimates could be accurate. Some suspected that risk-based mammography was motivated by a desire to save money (n = 6). CONCLUSION: Some women thought risk-based screening made sense. Willingness to abandon traditional screening for the new paradigm was mixed. Broad acceptability of risk-based screening will require clearer communication about its rationale and feasibility and consistent messages from the health care team.
Subject(s)
Breast Neoplasms/psychology , Early Detection of Cancer/psychology , Focus Groups , Mammography/psychology , Medical Overuse/prevention & control , Qualitative Research , Adult , Aged , Breast Neoplasms/diagnostic imaging , Early Detection of Cancer/methods , False Positive Reactions , Female , Focus Groups/methods , Humans , Mammography/methods , Middle AgedABSTRACT
INTRODUCTION: CollaboRATE is a brief patient survey focused on shared decision making. This paper aims to (i) provide insight on facilitators and challenges to implementing a real-time patient survey and (ii) evaluate CollaboRATE scores and response rates across multiple clinical settings with varied patient populations. METHOD: All adult patients at three United States primary care practices were eligible to complete CollaboRATE post-visit. To inform key learnings, we aggregated all mentions of unanticipated decisions, problems and administration errors from field notes and email communications. Mixed-effects logistic regression evaluated the impact of site, clinician, patient age and patient gender on the CollaboRATE score. RESULTS: While CollaboRATE score increased only slightly with increasing patient age (OR 1.018, 95% CI 1.014-1.021), female patient gender was associated with significantly higher CollaboRATE scores (OR 1.224, 95% CI 1.073-1.397). Clinician also predicts CollaboRATE score (random effect variance 0.146). Site-specific factors such as clinical workflow and checkout procedures play a key role in successful in-clinic implementation and are significantly related to CollaboRATE scores, with Site 3 scoring significantly higher than Site 1 (OR 1.759, 95% CI 1.216 to 2.545) or Site 2 (z=-2.71, 95% CI -1.114 to -0.178). DISCUSSION: This study demonstrates that CollaboRATE can be used in diverse primary care settings. A clinic's workflow plays a crucial role in implementation. Patient experience measurement risks becoming a burden to both patients and administrators. Episodic use of short measurement tools could reduce this burden.
Subject(s)
Decision Making , Patient Participation/statistics & numerical data , Patient Reported Outcome Measures , Cooperative Behavior , Humans , Patient-Centered Care , Primary Health Care , Sex Factors , Surveys and Questionnaires , United StatesABSTRACT
BACKGROUND: Breast cancer is the most commonly diagnosed malignancy in women. Mastectomy and breast-conserving surgery (BCS) have equivalent survival for early stage breast cancer. However, each surgery has different benefits and harms that women may value differently. Women of lower socioeconomic status (SES) diagnosed with early stage breast cancer are more likely to experience poorer doctor-patient communication, lower satisfaction with surgery and decision-making, and higher decision regret compared to women of higher SES. They often play a more passive role in decision-making and are less likely to undergo BCS. Our aim is to understand how best to support women of lower SES in making decisions about early stage breast cancer treatments and to reduce disparities in decision quality across socioeconomic strata. METHODS: We will conduct a three-arm, multi-site randomized controlled superiority trial with stratification by SES and clinician-level randomization. At four large cancer centers in the United States, 1100 patients (half higher SES and half lower SES) will be randomized to: (1) Option Grid, (2) Picture Option Grid, or (3) usual care. Interviews, field-notes, and observations will be used to explore strategies that promote the interventions' sustained use and dissemination. Community-Based Participatory Research will be used throughout. We will include women aged at least 18 years of age with a confirmed diagnosis of early stage breast cancer (I to IIIA) from both higher and lower SES, provided they speak English, Spanish, or Mandarin Chinese. Our primary outcome measure is the 16-item validated Decision Quality Instrument. We will use a regression framework, mediation analyses, and multiple informants analysis. Heterogeneity of treatment effects analyses for SES, age, ethnicity, race, literacy, language, and study site will be performed. DISCUSSION: Currently, women of lower SES are more likely to make treatment decisions based on incomplete or uninformed preferences, potentially leading to poorer decision quality, quality of life, and decision regret. This study hopes to identify solutions that effectively improve patient-centered care across socioeconomic strata and reduce disparities in decision and care quality. TRIAL REGISTRATION: NCT03136367 at ClinicalTrials.gov Protocol version: Manuscript based on study protocol version 2.2, 7 November 2017.
Subject(s)
Breast Neoplasms/surgery , Decision Support Techniques , Healthcare Disparities , Physician-Patient Relations , Social Class , Adult , Breast Neoplasms/pathology , Clinical Protocols , Communication , Decision Making , Emotions , Female , Humans , Neoplasm Staging , Patient Satisfaction , Risk AssessmentABSTRACT
BACKGROUND AND OBJECTIVES: More extensive surgical treatments for early stage breast cancer are increasing. The patterns of preoperative MRI overall and by stage for this trend has not been well established. METHODS: Using Breast Cancer Surveillance Consortium registry data from 2010 through 2014, we identified women with an incident non-metastatic breast cancer and determined use of preoperative MRI and initial surgical treatment (mastectomy, with or without contralateral prophylactic mastectomy (CPM), reconstruction, and breast conserving surgery ± radiation). Clinical and sociodemographic covariates were included in multivariable logistic regression models to estimate adjusted odds ratios and 95% confidence intervals. RESULTS: Of the 13 097 women, 2217 (16.9%) had a preoperative MRI. Among the women with MRI, results indicated 32% higher odds of unilateral mastectomy compared to breast conserving surgery and of mastectomy with CPM compared to unilateral mastectomy. Women with preoperative MRI also had 56% higher odds of reconstruction. CONCLUSION: Preoperative MRI in women with DCIS and early stage invasive breast cancer is associated with more frequent mastectomy, CPM, and reconstruction surgical treatment. Use of more extensive surgical treatment and reconstruction among women with DCIS and early stage invasive cancer whom undergo MRI warrants further investigation.
Subject(s)
Breast Neoplasms/surgery , Breast/diagnostic imaging , Magnetic Resonance Imaging/methods , Adult , Aged , Breast Neoplasms/diagnostic imaging , Female , Humans , Logistic Models , Mastectomy , Mastectomy, Segmental , Middle Aged , Neoplasm StagingABSTRACT
BACKGROUND: Appendectomy is the most common emergency surgery performed in the USA. Removal of a non-inflamed appendix during unrelated abdominal surgery (prophylactic or incidental appendectomy) can prevent the downstream risks and costs of appendicitis. It is unknown whether such a strategy could be cost saving for the health system. METHODS: We considered hypothetical patient cohorts of varying ages from 18 to 80, undergoing elective laparoscopic abdominal and pelvic procedures. A Markov decision model using cost per life-year as the main outcome measure was constructed to simulate the trade-off between cost and risk of prophylactic appendectomy and the ongoing risk of developing appendicitis, with downstream costs and risks. Rates, probabilities, and costs of disease, treatment, and outcomes by patient age and gender were extracted from the literature. Sensitivity analyses were conducted using complications and costs of prophylactic appendectomy. RESULTS: With our base-case assumptions, including added cost of prophylactic appendectomy of $660, we find that prophylactic removal of the appendix is cost saving for males aged 18-27 and females aged 18-28 undergoing elective surgery. The margin of cost savings depends on remaining life-years and increases exponentially with age: a 20-year-old female undergoing elective surgery could save $130 over a lifetime by undergoing prophylactic appendectomy, while a 40-year-old female would lose $130 over a lifetime. When the risk of the prophylactic appendectomy exceeds the risk of laparoscopic appendectomy for appendicitis or the cost exceeds $1080, it becomes more cost saving to forego the prophylactic procedure. CONCLUSIONS: Prophylactic appendectomy can be cost saving for patients younger than age thirty undergoing elective laparoscopic abdominal and pelvic procedures.