Correlates of Mental Health in Adolescents and Young Adults with Cerebral Palsy: A Cross-Sectional Analysis of the MyStory Project.

BACKGROUND: It is important to gain a better understanding of mental health issues in adolescents and young adults (AYA) with cerebral palsy (CP). In this cross-sectional study, we explore if demographics, social and clinical questionnaire scores, and cortisol levels in hair samples from AYA with CP are associated with higher scores on anxiety and/or depression questionnaires. METHODS: Data from a community-based sample of 63 AYA with CP (30 females; ages 16 to 30 (median age of 25)) were analyzed. Forty-one (65%) participants (20 females) provided a hair sample. Outcomes were assessed using bivariate linear regression analyses and hierarchical regression analyses. RESULTS: Clinical depressive and anxiety symptoms were present in 33% and 31% of participants, respectively. Family functioning, B = 9.62 (95%CI: 5.49-13.74), fatigue, B = 0.15 (95%CI: 0.05-0.25), and pain, B = 1.53 (95%CI: 0.48-2.58) were statistically significant predictors of depressive symptoms. Fatigue, B = 0.24 (95%CI: 0.12-0.35) and pain, B = 1.63 (95%CI: 0.33-2.94) were statistically significant predictors of anxiety. Cortisol levels from hair samples were not found to be associated with depressive symptoms or anxiety. CONCLUSIONS: A high prevalence of mental health problems and co-occurring physical problems was found in AYA with CP. Integrating mental support into regular care for AYA with CP is recommended.

Recommendations for the Prescription of Opioids at Discharge After Abdominopelvic Surgery: A Systematic Review.

Importance: The prescription of opioids at discharge after abdominopelvic surgery is variable and often excessive. A lack of guidance for abdominopelvic surgeons may explain the suboptimal nature of current prescribing practices. Objective: To systematically review existing recommendations on the prescription of opioids at discharge, the appropriate disposal of opioids, and the prevention of chronic postsurgical opioid use after abdominopelvic surgery. Evidence Review: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. From January 2010 to December 2018, a search of MEDLINE, PsycINFO, HealthSTAR, Embase, and the difficult to locate and unpublished (ie, gray) literature was performed using a peer-reviewed strategy with variations of the terms opioid, surgery, and guideline to identify English-language documents that contained recommendations published by professional societies or health care institutions. The quality of clinical practice guidelines was assessed using the Appraisal of Guidelines Research and Evaluation II (AGREE II) tool. A descriptive synthesis of results was performed. Findings: Of 5530 citations screened, 41 full-text documents were included in the systematic review. Fifteen clinical practice guidelines were identified. AGREE II domain scores varied substantially. Identified among the 41 included documents were 98 recommended interventions for the prescription of opioids at discharge, 8 interventions for the disposal of opioids, and 8 interventions for the prevention of chronic postsurgical opioid use. Only 13 of 114 interventions (11.4%) were supported by an assessment of strength or level of evidence, and the amount of opioid recommended after specific abdominopelvic surgical procedures varied widely between guidance documents, even for the same procedure. Conclusions and Relevance: Current guidance for the prescription of opioids at discharge after abdominopelvic surgery is heterogeneous and rarely supported by evidence. More research is needed on this topic to guide the development of future recommendations.

Evaluating A Multidisciplinary Cancer Conference Checklist: Practice Versus Perceptions.

BACKGROUND: Presentation to multidisciplinary cancer conferences (MCCs) supports optimal treatment of young women with breast cancer (YWBC). However, research shows barriers to MCC practice, and variation in professional attendance and referral patterns. A checklist may help overcome these barriers and support MCC practice with YWBC. METHODS: We developed, piloted and evaluated an MCC checklist in sites participating in a pan-Canadian study (RUBY; Reducing the bUrden of Breast cancer in Young women). A survey assessed checklist processes and impacts, and checklist data were analysed for checklist uptake, MCC presentation rates and MCC processes including staff attendance. RESULTS: Fifteen RUBY sites used the checklist (~50%), mostly for data collection/tracking. Some positive effects on clinical practice such as increased presentation of YWBC at MCC were reported, but most survey participants indicated that MCC processes were sufficient without the checklist. Conversely, checklist data show that only 31% of patients were presented at MCC. Of those, 41% were recommended treatment change. CONCLUSION: Despite limited checklist uptake, there was evidence of its clinical practice benefit. Furthermore, it supported data collection/quality monitoring. Critically, checklist data showed gaps in MCC practice and low MCC presentation rates for YWBC. This contrasts with overall provider perceptions that MCCs are working well. Findings suggest that supports for MCC are needed but may best take the form of clear national practice recommendations and audit and feedback cycles to inform awareness of good MCC practice and outcomes. In this setting, tools like the MCC checklist may become helpful in supporting MCC practice.

The "Begin Exploring Fertility Options, Risks and Expectations" (BEFORE) decision aid: development and alpha testing of a fertility tool for premenopausal breast cancer patients.

BACKGROUND: Premenopausal breast cancer patients are at risk of treatment-related infertility. Many patients do not receive sufficient fertility information before treatment. As such, our team developed and alpha tested the Begin Exploring Fertility Options, Risks, and Expectations decision aid (BEFORE DA). METHODS: The BEFORE DA development process was guided by the International Patient Decision Aids Standards and the Ottawa Decision Support Framework. Our team used integrated knowledge translation by collaborating with multiple stakeholders throughout the development process including breast cancer survivors, multi-disciplinary health care providers (HCPs), advocates, and cancer organization representatives. Based on previously conducted literature reviews and a needs assessment by our team - we developed a paper prototype. The paper prototype was finalized at an engagement meeting with stakeholders and created into a graphically designed paper and mirrored online decision aid. Alpha testing was conducted with new and previously engaged stakeholders through a questionnaire, telephone interviews, or focus group. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. RESULTS: Our team developed an 18-page paper prototype containing information deemed valuable by stakeholders for fertility decision-making. The engagement meeting brought together 28 stakeholders to finalize the prototype. Alpha testing of the paper and online BEFORE DA occurred with 17 participants. Participants found the BEFORE DA usable, acceptable, and most provided enthusiastic support for its use with premenopausal breast cancer patients facing a fertility decision. Participants also identified areas for improvement including clarifying content/messages and modifying the design/photos. The final BEFORE DA is a 32-page paper and mirrored online decision aid ( https://fertilityaid.rethinkbreastcancer.com ). The BEFORE DA includes information on fertility, fertility options before/after treatment, values clarification, question list, next steps, glossary and reference list, and tailored information on the cost of fertility preservation and additional resources by geographic location. CONCLUSION: The BEFORE DA, designed in collaboration with stakeholders, is a new tool for premenopausal breast cancer patients and HCPs to assist with fertility discussions and decision-making. The BEFORE DA helps to fill the information gap as it is a tool that HCPs can refer patients to for supplementary information surrounding fertility.

Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review.

BACKGROUND: Cancer treatments have the potential to cause infertility among women of reproductive age. Many cancer patients do not receive sufficient oncofertility information or referrals to reproductive specialists prior to starting cancer treatment. While health care providers cite lack of awareness on the available oncofertility resources, the majority of cancer patients use the internet as a resource to find additional information to supplement discussions with their providers. OBJECTIVE: Our aim was to identify and characterize Web-based oncofertility decision aids and health education materials accessible for women of reproductive age with a diagnosis of any cancer. METHODS: We searched five databases and the gray literature for the years 1994-2018. The developer and content information for identified resources was extracted. Each resource underwent a quality assessment. RESULTS: We identified 31 open access resources including 4 decision aids and 27 health educational materials. The most common fertility preservation options listed in the resources included embryo (31/31, 100%), egg (31, 100%), and ovarian tissue freezing (30, 97%). Notably, approximately one-third (11, 35%) contained references and 5 (16%) had a reading level of grade 8 or below. Resources were of varying quality; two decision aids from Australia and the Netherlands, two booklets from Australia and the United Kingdom, and three websites from Canada and the United States rated as the highest quality. CONCLUSIONS: This comprehensive review characterizes numerous resources available to support patients and providers with oncofertility information, counseling, and decision making. More focus is required to improve the awareness and the access of existing resources among patients and providers. Providers can address patient information needs by leveraging or adapting existing resources to support clinical discussions and their specific patient population.

An evaluation of oncofertility decision support resources among breast cancer patients and health care providers.

BACKGROUND: Cancer patients of reproductive age are at risk of infertility as a result of their treatment. Oncofertility decision support resources can assist patients with fertility decision-making before treatment yet available oncofertility resources contain varying levels of detail and different fertility options. The key information/sections needed in oncofertility resources remain unclear. To explore the information needs for oncofertility decision-making before cancer treatment, we aimed to evaluate existing oncofertility decision support resources with breast cancer patients and providers. METHODS: We conducted 30 to 90-min interviews that included a survey questionnaire and open-ended questions with patients and providers between March and June 2016. Interviews were transcribed verbatim. Analysis involved descriptive statistics for survey responses and thematic analysis of qualitative data. RESULTS: A total of 16 participants completed interviews. Key information perceived by most participants as necessary for fertility decision-making included tailored post-treatment pregnancy rates, cost ranges and financial assistance for the fertility options based on patients' situation. However, patient and provider participants expressed differing opinions on the inclusion of all before and after treatment fertility options and the amount of fertility information required at diagnosis. CONCLUSION: The evaluation identified fertility information needs among patients in addition to providers' views on patient needs. While existing oncofertility resources contain information perceived as necessary for decision-making there is an opportunity to use these findings to create or enhance resources to better meet the needs of patients. Additionally, patients and providers differing views on information needs highlight the opportunity for provider training to ensure better communication using resources in clinic to understand specific patient needs.

What Young Women with Breast Cancer Get Versus What They Want in Online Information and Social Media Supports.

Purpose: Young women are high users of social media (SM), but information is lacking on whether online supports including SM meet the needs of young women (<40 years) with breast cancer (YWBC). YWBC are a vulnerable population who experience many psychosocial challenges alongside cancer diagnosis and treatment. This study aimed to gather data on what YWBC get versus what they want in online support. Methods: Semi-structured interviews explored YWBC's perceptions and use of online information/SM, including visions for ideal support. YWBC between the ages of 18-40 were recruited via two urban oncology clinics. Recruitment continued until redundancy of responses was achieved. Results: Thirteen YWBC participated in the study. Some reported benefits of online supports included connection with similar others, emotional support and ease of use. These benefits were balanced by drawbacks, such as a lack of appropriate/credible information and/or distressing information. Respondents spontaneously mentioned coping strategies such as managing information exposure and regulating SM use to mitigate against harms of online supports. Collectively, participants described nine facets of an ideal online support hub, which could function as a one stop shop for informational, practical and emotional supports for YWBC. Conclusion: Developing a multifunction online support hub may help women to find credible and useful information, rapidly, and address current limitations of online supports.

A review of factors affecting patient fertility preservation discussions & decision-making from the perspectives of patients and providers.

Women undergoing cancer treatments and their healthcare providers encounter challenges in fertility preservation (FP) discussions and decision-making. A systematic review of qualitative research was conducted to gain in-depth understanding of factors influencing FP discussions and decision-making. Major bibliographic databases and grey literature in English from 1994 to 2016 were searched for qualitative research exploring patient/provider perspectives on barriers and facilitators to FP decision-making. Two researchers screened article titles, abstracts and full-texts. Verbatim data on research questions, study methodology, participants, findings and discussions of findings were extracted. Quality assessment and thematic analysis were conducted. The search yielded 74 studies dating from 2007 onwards; 29 met the inclusion criteria. Analysis revealed three types of barriers: (a) FP knowledge, skills and information deficits contributed to discomfort for providers and discontent for patients; (b) psychosocial factors and clinical issues influenced providers' practices around FP discussions and patients' decision-making; and (c) material, social and structural factors (e.g., lack of resources and accessibility) posed challenges to FP discussions. Potential facilitators to FP discussions and decision-making were also identified. A discussion of ways to improve physician's knowledge and facilitate women's decision-making and access to FP is presented, along with areas for policy development and further research.

Client safety in assisted living: perspectives from clients, personal support workers and administrative staff in Toronto, Canada.

As the population ages, the demand for long-term care settings is expected to increase. Assisted living is a suitable and favourable residence for older individuals to receive care services specific to their needs while maintaining their independence and privacy. With the growing transition of older individuals into assisted living, facilities need to ensure that safe care is continually maintained. The purpose of this study was to determine the gaps and strengths in care related to safety in assisted living facilities (ALFs). A qualitative descriptive research design was used to provide a comprehensive understanding of client safety from the perspectives of clients, administrative staff and personal support workers. Interviews were conducted with 22 key informants from three ALFs in Toronto, Ontario throughout July 2012. All interviews were semi-structured, audio-recorded and transcribed verbatim. Initial deductive analysis used directed coding based on a prior literature review, followed by inductive analysis to determine themes. Three themes emerged relating to the safety of clients in ALFs: meaning of safety, a multi-faceted approach to providing safe care and perceived areas of improvement. Sub-themes also emerged including physical safety, multiple factors, working as a team, respecting clients' independence, communication and increased education and available resources. The study findings can contribute to the improvement and development of new processes to maintain and continually ensure safe care in ALFs.

Raising the bar: using program evaluation for quality improvement.

The Cancer Quality Council of Ontario has undertaken 3 programmatic reviews, in partnership with Cancer Care Ontario, to evaluate an emerging or existing program and to provide future directions. The reviews are a quality improvement tool consisting of an assessment of the program's current state, a critical appraisal, and an environmental scan in advance of an event where attendees hear best practices from jurisdictions and participate in a discussion leading to a set of recommendations for the program.