Extracting big data from the internet to support the development of a new patient-reported outcome measure for breast implant illness: a proof of concept study.

PURPOSE: Individuals with health conditions often use online patient forums to share their experiences. These patient data are freely available and have rarely been used in patient-reported outcomes (PRO) research. Web scraping, the automated identification and coding of webpage data, can be employed to collect patient experiences for PRO research. The objective of this study was to assess the feasibility of using web scraping to support the development of a new PRO measure for breast implant illness (BII). METHODS: Nine publicly available BII-specific web forums were chosen post-consultation with two prominent BII advocacy leaders. The Python Selenium and Pandas packages were used to automate extraction of de-identified text from the individual posts/comments into a spreadsheet. Data were coded using a line-by-line approach and constant comparison was used to create top-level domains and sub-domains. RESULTS: 6362 unique codes were identified and organized into four top-level domains of information needs, symptom experiences, life impact of BII, and care experiences. Information needs of women included seeking/sharing information pre-breast implant surgery, post-breast implant surgery, while contemplating explant surgery, and post-explant surgery. Symptoms commonly described by women included fatigue, brain fog, and musculoskeletal symptoms. Many comments described BII's impact on daily activities and psychosocial wellbeing. Lastly, some comments described negative care experiences and experiences related to advocating for themselves to providers. CONCLUSION: This proof-of-concept study demonstrated the feasibility of employing web scraping as a cost-effective, efficient method to understand the experiences of women with BII. These data will be used to inform the development of a BII-specific PROM.

Adaptation and qualitative evaluation of the BETTER intervention for chronic disease prevention and screening by public health nurses in low income neighbourhoods: views of community residents.

BACKGROUND: The BETTER intervention is an effective comprehensive evidence-based program for chronic disease prevention and screening (CDPS) delivered by trained prevention practitioners (PPs), a new role in primary care. An adapted program, BETTER HEALTH, delivered by public health nurses as PPs for community residents in low income neighbourhoods, was recently shown to be effective in improving CDPS actions. To obtain a nuanced understanding about the CDPS needs of community residents and how the BETTER HEALTH intervention was perceived by residents, we studied how the intervention was adapted to a public health setting then conducted a post-visit qualitative evaluation by community residents through focus groups and interviews. METHODS: We first used the ADAPT-ITT model to adapt BETTER for a public health setting in Ontario, Canada. For the post-PP visit qualitative evaluation, we asked community residents who had received a PP visit, about steps they had taken to improve their physical and mental health and the BETTER HEALTH intervention. For both phases, we conducted focus groups and interviews; transcripts were analyzed using the constant comparative method. RESULTS: Thirty-eight community residents participated in either adaptation (n = 14, 64% female; average age 54 y) or evaluation (n = 24, 83% female; average age 60 y) phases. In both adaptation and evaluation, residents described significant challenges including poverty, social isolation, and daily stress, making chronic disease prevention a lower priority. Adaptation results indicated that residents valued learning about CDPS and would attend a confidential visit with a public health nurse who was viewed as trustworthy. Despite challenges, many recipients of BETTER HEALTH perceived they had achieved at least one personal CDPS goal post PP visit. Residents described key relational aspects of the visit including feeling valued, listened to and being understood by the PP. The PPs also provided practical suggestions to overcome barriers to meeting prevention goals. CONCLUSIONS: Residents living in low income neighbourhoods faced daily stress that reduced their capacity to make preventive lifestyle changes. Key adapted features of BETTER HEALTH such as public health nurses as PPs were highly supported by residents. The intervention was perceived valuable for the community by providing access to disease prevention. TRIAL REGISTRATION: #NCT03052959, 10/02/2017.

Relation between socioeconomic variables and surgical, systemic and radiation treatment in a cohort of patients with breast cancer in an urban Canadian centre

Background: Studies have shown an association between socioeconomic status and breast cancer treatment. We examined the relation between socioeconomic status and the treatment of breast cancer (surgical, systemic and radiation) in a universal health care system. Methods: Data from a single urban Canadian centre were collected for consecutive patients who received a diagnosis of breast cancer from January 2010 to December 2011. Variables included patient and disease factors, surgery type, systemic and radiation treatment, and breast reconstruction. Socioeconomic variables were obtained from 2006 Canadian census data. We used multivariable logistic regression to identify predictors of breast cancer treatment. Results: A total of 721 patients were treated for breast cancer during the study period. Socioeconomic variables were not related to type of breast surgery for breast cancer. Age less than 50 years, having a first-degree relative with breast cancer and income status were predictors of breast reconstruction. Employment status was a consistent predictor of systemic and radiation treatment. Conclusion: Employment consistently predicted systemic and radiation treatment, and age and income were predictors of breast reconstruction in a universal health care system. Further research is required to determine precisely how socioeconomic factors affect care and to minimize possible disparities in delivery of health care services.

Contexte: Des études ont montré un lien entre la situation socio-économique et le traitement du cancer du sein. Nous avons analysé ce lien entre la situation socioéconomique et le traitement (chirurgie, chimiothérapie, radiothérapie) du cancer du sein dans un système de santé universel. Méthodes: Les données d'un seul centre urbain canadien ont été compilées pour les patientes consécutives ayant reçu un diagnostic de cancer du sein entre janvier 2010 et décembre 2011. Les variables incluaient des facteurs propres aux patientes et à la maladie, le type de chirurgie, la chimiothérapie, la radiothérapie et la reconstruction mammaire. Les variables socio-économiques proviennent des données du recensement canadien de 2006. Nous avons utilisé la régression logistique multivariée pour identifier les prédicteurs du traitement du cancer du sein. Résultats: En tout, 721 patientes ont été traitées pour un cancer du sein durant la période de l'étude. Les variables socio-économiques n'ont pas influé sur le type de chirurgie mammaire pour cancer du sein. L'âge inférieur à 50 ans, un cancer du sein chez une parente au premier degré et le revenu ont été des prédicteurs de la reconstruction mammaire. La situation professionnelle a été un prédicteur fiable du traitement systémique et de la radiothérapie. Conclusion: L'emploi a été un prédicteur fiable du traitement systémique et de la radiothérapie, et l'âge et le revenu ont été des prédicteurs de la reconstruction mammaire, dans un système de santé universel. Il faudra approfondir la recherche pour déterminer plus précisément l'influence des facteurs socio-économiques sur les soins et pour réduire les possibles disparités dans leur prestation.

A Population-Based Study of the Effects of a Regional Guideline for Completion Axillary Lymph Node Dissection on Axillary Surgery in Patients with Breast Cancer.

INTRODUCTION: Evidence from the American College of Surgeons Oncology Group (ACOSOG) Z0011 trial suggests completion axillary lymph node dissection (cALND) after positive sentinel lymph node biopsy (+SLNB) does not improve outcomes in select patients, leading to practice variation. A multidisciplinary group of surgeons, oncologists, and pathologists developed a regional guideline for cALND which was disseminated in August 2012. We assessed the impact of Z0011 and the regional guideline on cALND rates. METHODS: Consecutive invasive breast cancer cases undergoing SLNB were reviewed at 12 hospitals. Patient, tumor, and process measures were collected for three time periods: TP1, before publication of Z0011 (May 2009-August 2010); TP2, after publication of Z0011 (March 2011-June 2012); and TP3, after guideline dissemination (January 2013-April 2014). Cases were categorized by whether they met the guideline criteria for cALND (i.e. ≤50 years, mastectomy, T3 tumor, three or more positive sentinel lymph nodes [SLNs]) or not (e.g. age > 50 years, breast-conserving surgery, T1/T2 tumor, and one to two positive SLNs). RESULTS: The SLNB rate increased from 56 % (n = 620), to 70 % (n = 774), to 78 % (n = 844) in TP1, TP2, and TP3, respectively. Among cases not recommended for cALND using the guideline criteria, cALND rates decreased significantly over time (TP1, 71 %; TP2, 43 %; TP3, 17 %) [p < 0.001]. The cALND rate also decreased over time among cases recommended to have cALND using the guideline criteria (TP1, 92 %; TP2, 69 %; TP3, 58 %) [p < 0.001]. Based on multivariable analysis, age and nodal factors appeared to be significant factors for cALND decision making. CONCLUSION: Publication of ACOSOG Z0011 and regional guideline dissemination were associated with a marked decrease in cALND after +SLNB, even among several cases in which the guideline recommended cALND.

Survey of American and Canadian general surgeons' perceptions of margin status and practice patterns for breast conserving surgery.

Although breast conservation surgery (BCS) is commonly performed, several aspects of the procedure remain controversial. We undertook a cross-sectional survey to compare Canadian (CDN) and American (AM) general surgeons' reported BCS practice patterns to better understand the cross-border differences in early-stage breast cancer surgery care. A modified Dillman Method survey was mailed to 1,447 AM and 1,443 CDN surgeons. Factors evaluated included preoperative assessment, margin definition, surgical techniques, and re-excision practices. The response rate was 26% and 51% for AM and CDN surgeons, respectively. There was variation in use of preoperative core biopsies. American surgeons required wider margins for invasive cancer and ductal carcinoma in situ, and more often recommend re-excision for invasive cancer with 1 and 2 mm margins (p < 0.05). There was also variability in surgical techniques used for intraoperative margin assessment. Wide variation in BCS practice was observed, with some of this variability related to surgeon country.

Iterative qualitative approach to establishing content validation of a patient-reported outcome measure for arm lymphedema: the LYMPH-Q Upper Extremity Module.

BACKGROUND: Breast cancer-related lymphedema (BRCL) is one of the most common causes of upper extremity (UE) lymphedema in developed nations and substantially impacts health-related quality of life. To advance our understanding of the epidemiology and treatment of BRCL, rigorously developed and validated patient-reported outcome measures (PROMs) are needed. This study aimed to demonstrate the iterative content validity of a modular UE lymphedema-specific PROM called the LYMPH-Q UE module. METHODS: A multi-step iterative qualitative approach was used. Semi-structured interview data from in-depth qualitative interviews with adult women (18 years and older) with BCRL were used to develop the first set of the LYMPH-Q UE scales. The content validity of these scales was demonstrated with patient and clinician feedback. Over the course of cognitive debriefing interviews, additional concepts of lymphedema worry and impact on work were identified as missing from the LYMPH-Q UE module. Subsequently, two new qualitative studies (a focus group and in-depth concept elicitation interviews with patients) were conducted, and two new scales were developed to measure lymphedema worry and impact on work life and their content validity was demonstrated. RESULTS: Qualitative data from in-depth and cognitive interviews with 15 (age 40-74 years) and 16 (age 38-74 years) women with BRCL, respectively, and feedback from 12 clinical experts, were used to develop and demonstrate the content validity of six LYMPH-Q UE scales measuring symptoms, function, appearance, psychological, information, and arm sleeve. Additionally, data from in-depth interviews with 12 (age 35-72 years) women with UE lymphedema and four focus groups (n = 16 women; age 35-74 years) was used to develop and assess the content validity of two new LYMPH-Q UE scales measuring lymphedema worry and impact on work life. The content validity of the previously established six scales was also demonstrated in these subsequent qualitative studies. CONCLUSION: The LYMPH-Q UE is a modular PROM developed using international guidelines for PROM development and can be used in clinical practice, research, and quality improvement to enhance patient-centered shared decision-making. This study's innovative and iterative approach to content validation demonstrates that the LYMPH-Q UE is a comprehensive measure that includes important concepts relevant to patients with UE lymphedema.

BETTER LIFE- guidelines for chronic disease preventive care for people aged 18-39 years: a literature review.

BACKGROUND: The original 'BETTER' (Building on Existing Tools To Improve Chronic Disease Prevention and Screening in Primary Care) approach consisted of a prevention-focused visit between participants aged 40-65 years and a "Prevention Practitioner" (PP), who empowered the participant to set achievable prevention and screening goals for cancers and chronic diseases. BETTER was successfully adapted for economically deprived communities (BETTER HEALTH) in Canada. Our objective was to conduct a review of guidelines in preparation for adapting the 'BETTER HEALTH' approach for younger adults aged 18-39 years living with lower income, a group known to have earlier mortality due to a higher prevalence of preventable chronic diseases than their peers with higher income. METHODS: We searched multiple electronic databases and grey literature for clinical practice guidelines on prevention/screening and included those that met the following criteria: published in English from 2008-2020 in Canada or any of the following countries (Australia, Ireland, New Zealand, Scotland, United States and England); and addressed prevention or screening. We assessed quality using the Appraisal of Guidelines for Research and Evaluation (AGREE) II tool and extracted data (publication details, recommendations, and Quality/Level of evidence as reported by authors) from sources with overall scores of 5 or higher. Final recommendations were compiled after harmonization with input from diverse stakeholders (co-investigators, PPs, and the Community Advisory Committee). RESULTS: We included a total of 85 guidelines, and developed a final list of 42 recommendations for 18-39 year-olds across 21 topics. Specific recommendations fell under the following topics: cancers, cardiovascular disease, diabetes, obesity, lifestyle (alcohol; healthy nutrition/physical activity); healthy relationships and healthy sexuality, immunization, oral health, social determinants of health, and substance use. CONCLUSION: We identified evidence-based guidelines on individual-level prevention/screening actions for adults 18-39 years old and relevant for those living with lower income which will directly inform development and implementation of the BETTER LIFE intervention.

COVID-19: A Qualitative Analysis of Academic Family Physician Leaders' Crisis Response.

BACKGROUND AND OBJECTIVES: The onset of the COVID-19 pandemic severely threatened all aspects of academic family medicine, constituting a crisis. Multiple publications have identified recommendations and documented the creative responses of primary care and academic organizations to address these challenges, but there is little research on how decisions came about. Our objective was to gain insight into the context, process, and nature of family medicine leaders' discussions in pivoting to address a crisis. METHODS: We used a qualitative descriptive design to explore new dimensions of existing concepts. The setting was the academic family medicine department at the University of Toronto. To identify leadership themes, we used the constant comparative method to analyze transcripts of monthly meetings of the departmental executive: three meetings immediately before and three following the declaration of a state emergency in Ontario. RESULTS: Six themes were evident before and after the onset of the pandemic: building capacity in academic family medicine; developing leadership; advancing equity, diversity, and inclusion; learner safety and wellness; striving for excellence; and promoting a supportive and collegial environment. Five themes emerged as specific responses to the crisis: situational awareness; increased multidirectional communication; emotional awareness; innovation in education and patient care; and proactive planning for extended adaptation to the pandemic. CONCLUSION: Existing cultural and organizational approaches formed the foundation for the crisis response, while crisis-specific themes reflected skills and attitudes that are essential in clinical family medicine, including adapting to community needs, communication, and emotional awareness.

Ensuring patient centeredness in upper extremity lymphedema research: Identifying patient-prioritized agenda and preferences.

PURPOSE: To elicit a patient-prioritized agenda and preferences for upper extremity lymphedema (LE) research. METHODS: Focus group sessions (FGs) were conducted with English-speaking, adult women (18 years and older) with breast cancer-related LE (BCRL) seeking conservative or surgical care at two tertiary cancer centers in Ontario, Canada. An interview guide was used; women were asked to describe health-related quality of life (HRQL) outcomes that mattered the most to them, followed by their preferences for research study design and for providing patient-reported outcomes measure (PROM) data. Inductive content analysis was used to identify themes and subthemes. RESULTS: A total of 16 women participated in 4 FG sessions (55 ± 9.5 years) and described the impact of LE on their appearance, physical, psychosocial, and sexual well-being. Women emphasized that psychosocial well-being was often not discussed in clinical care and that they were poorly informed of LE risk and care options. Most women said that they would not be willing to be randomized to surgical versus conservative management of LE. They also expressed a preference to complete PROM data electronically. All women emphasized the value of having an open text option alongside PROMs to expand on their concerns. CONCLUSION: Patient centeredness is key to generating meaningful data and ensuring ongoing engagement in clinical research. In LE, comprehensive PROMs that measure a range of HRQL concerns, especially psychosocial well-being, should be considered. Women with BCRL are reluctant to be randomized to conservative care when a surgical option is available, resulting in implications for planning trial sample size and recruitment.

A population-based study of treatment patterns, 10-year recurrence and breast cancer-specific mortality in a cohort of elderly patients with breast cancer.

BACKGROUND: We compared disease characteristics, therapies offered and received, and outcomes between older (>75 years) and younger (60-75 years) women with breast cancer (BC) from a regional database in Ontario, Canada. METHODS: BC surgical cases from 12 hospitals were included. Younger (60-75 years) and older (>75 years) groups were compared. Cox proportional hazards regression with competing risk analyses assessed the relationship between predictor variables, 10-year recurrence and BC-specific mortality. RESULTS: Our sample comprised 774 women; 33.5% were older. Older women had larger tumours, were more likely to have positive nodes, had more comorbidities, were more likely to undergo mastectomy, had less nodal surgery, were less likely to receive adjuvant therapies, and experienced more recurrences and BC-specific deaths (p < 0.05). Significant predictors of recurrence were older age, higher grade and disease stage, and omission of nodal surgery. Older age, higher grade, and stage were predictors of BC-specific mortality. CONCLUSION: Older BC patients (>75 years) received less treatment and experienced increased recurrence and BC-specific mortality.

Technical factors, surgeon case volume and positive margin rates after breast conservation surgery for early-stage breast cancer.

BACKGROUND: For patients with breast cancer, a negative surgical margin at first breast-conserving surgery (BCS) minimizes the need for reoperation and likely reduces postoperative anxiety. We assessed technical factors, surgeon and hospital case volume and margin status after BCS in early-stage breast cancer. METHODS: We performed a retrospective cohort study using a regional cancer centre database of patients who underwent BCS for breast cancer from 2000 to 2002. We considered the influence of patient, tumour and technical factors (e.g., size of specimen and preoperative diagnosis of cancer available) and surgeon and hospital case volume on margin status at first and final operation. We performed univariate and multivariate regression analyses. RESULTS: We reviewed 489 cases. There were no differences in patient or tumour characteristics among the low-, medium- and high-volume surgeon groups. High-volume surgeons were significantly more likely than other surgeons to operate with a confirmed preoperative diagnosis and to resect a larger volume of tissue. In our univariate analysis and at first operation, the rates of positive margins were 16.4%, 32.9% and 29.1% for high-, medium- and low-volume surgeons, respectively (p = 0.002). In the multivariate analysis, tumour factors (palpability, size, histology), presence of a confirmed preoperative diagnosis and size of resection specimen significantly predicted negative margins. However, when we controlled for these and other factors, high surgeon volume was not a predictor of negative margins at first surgery (odds ratio 1.8, 95% confidence interval 0.9-3.8, p = 0.09). Increased hospital volume was not associated with a lower rate of positive margins at first surgery. CONCLUSION: Various tumour and technical factors were associated with negative margins at first BCS, whereas surgeon and hospital volume status were not. Technical steps that are under the control of the operating surgeon are likely effective targets for quality initiatives in breast cancer surgery.

Adoption and outcomes of radioguided seed localization for non-palpable invasive and in-situ breast cancer at three academic tertiary care centers.

INTRODUCTION: Radioguided seed localization (RSL) is an alternative technique to wire-guided localization (WL) for localizing non-palpable breast lesions for breast conserving surgery. The purpose of this study was to assess adoption and outcomes of RSL at 3 academic hospitals in our city. METHODS: Data for consecutive invasive and in-situ breast cancer cases localized with RSL or WL at 3 hospitals between January 2012 and February 2016 were abstracted. Data analysis was conducted using the Student's t-test, ANOVA with Tukey's HSD test for post-hoc multiple comparisons, and chi-squared test. RESULTS: There were 803 consecutive cases. Hospital 1 exclusively used RSL (247 cases), whereas H2 adopted RSL (109 cases), but continued to use WL (347 cases). Hospital 3 exclusively used WL (100 cases). There was no difference between RSL and WL groups in positive margin rate (p = 0.337), re-operation (p = 0.413), or mean specimen volume (p = 0.190). DISCUSSION: There has been variable adoption of RSL in our city. Despite this, relevant surgical outcomes have been similar across groups. The causes of variable adoption of this novel technique merit further investigation.

Breast cancer recurrence following radioguided seed localization and standard wire localization of nonpalpable invasive and in situ breast cancers: 5-Year follow-up from a randomized controlled trial.

BACKGROUND: This study compared 5-year breast cancer (BC) recurrence rates in patients randomized to radioguided seed localization (RSL) or wire localization (WL) for non-palpable BC undergoing breast conserving surgery. METHODS: Chart review of follow-up visits and surveillance imaging was conducted. Data collected included patient and tumour factors, adjuvant therapies and BC recurrence (local recurrence (LR), regional recurrence (RR), and distant metastasis (DM)). Univariate analysis was used. RESULTS: Follow-up data were available for 298 patients (98%) and median follow-up time was 65 months. There were 11 (4%) cases of BC recurrence and median time to recurrence was 26 months. LR occurred in 8 patients (6 WL and 2 RSL; p = 0.28). Positive margins at first surgery (p = 0.024) and final surgery (p = 0.004) predicted for BC recurrence. CONCLUSIONS: There was no detectable difference in BC recurrence between WL and RSL groups and positive margins at initial or final surgery both predicted for BC recurrence.

Predictors of 5-year local, regional, and distant recurrent events in a population-based cohort of breast cancer patients.

BACKGROUND: The study purpose was to identify tumor and surgeon predictors of local recurrence (LR), regional recurrence (RR), and distant metastasis (DM) after breast cancer (BC) surgery in a population-based cohort. METHODS: Consecutive BC surgical cases from 12 hospitals in South Central Ontario between May 2006 and October 2006 were included. Data collected on chart review included patient and tumor factors, surgery type, adjuvant treatment, surgeon specialty, surgeon case volume, and practice type. Univariate and multivariable survival analyses were performed. RESULTS: Median follow-up was 5.5 years for 402 patients (97% of sample). LR, RR, and DM occurred in 18 (4.5%), 10 (2.5%), and 47 (12%) patients, respectively. Significant predictors of BC recurrence (LR or RR or DM) were tumor size and grade, nodal status, and lymphovascular invasion on multivariable analysis. CONCLUSION: Tumor factors such as size, grade, lymphovascular invasion, and nodal status predicted BC recurrence, while practice type, surgeon specialty, and case volume did not.

Effects of a regional guideline for completion axillary lymph node dissection in women with breast cancer to reduce variation in surgical practice: A qualitative study of physicians' views.

BACKGROUND: Recently the impact of completion axillary lymph node dissection (cALND) after positive sentinel lymph node biopsy on significant outcomes has been questioned, leading to variation in surgical practice. To address this variation, a multidisciplinary working group created a regional guideline for cALND. We explored the views and experiences of surgeons, medical oncologists (MOs), radiation oncologists (ROs) in a qualitative study that examined guideline implementation in practice. METHODS: The Pathman framework (awareness, agreement, adoption and adherence) informed the interview guide design and analysis. Semi-structured interviews were conducted with MOs, ROs and surgeons and transcribed. Transcripts were coded independently by 2 members of the study team and analyzed. Disagreements were resolved through consensus. RESULTS: Twenty-eight physicians (5 MO; 6RO; 17S) of 41 (68% of those approached) were interviewed. Ten of 11 (91%) hospital sites (54% community; 46% academic) and all 4 cancer clinics within the region were represented. Twenty-seven physicians (96%) were aware of the guideline, with all physicians reporting agreement and general adherence to the guideline. Most physicians indicated nodal factors, age and patient preference were key components of cALND decision-making. Physicians from all disciplines perceived that the guideline helped reduce variation in practice across the region. There were concerns that the guideline could be applied rigidly and not permit individual decision-making. CONCLUSIONS: Physicians identified breast cancer as an increasingly complex and multidisciplinary issue. Facilitators to guideline implementation included perceived flexibility and buy-in from all disciplines, while individual patient factors and controversial supporting evidence may hinder its implementation.

A cosmesis outcome substudy in a prospective, randomized trial comparing radioguided seed localization with standard wire localization for nonpalpable, invasive, and in situ breast carcinomas.

BACKGROUND: The primary study objective was to compare the cosmetic result of radioguided seed localization (RSL) with wire localization (WL). METHODS: A subgroup of patients enrolled in a multicentered, randomized trial comparing WL with RSL participated. Frontal photographs were taken 1 and 3 years postsurgery. The European Organization for Research and Treatment of Cancer Cosmetic Rating System was used to evaluate cosmesis outcomes by the patient and a panel of 5 raters. RESULTS: The study enrolled 73 patients (WL, n = 38; RSL, n = 35). Most patients rated their overall cosmesis as "excellent" or "good" (76% WL, 80% RSL). Patient and panel ratings on all cosmetic outcomes were similar between groups. Multivariable regression for overall cosmesis found larger specimen volume and reoperation to be predictors of worse ratings. CONCLUSIONS: All cosmetic outcomes assessed were similar after WL and RSL. The comparable outcomes may reflect similar reoperation rates and volumes of excision between groups.