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Family caregivers of patients with cancer provide substantial physical, emotional, and functional care throughout the cancer trajectory. While caregiving can create employment and financial challenges, there is insufficient evidence to inform the development of caregiver-reported outcomes (CROs) that assess these experiences. The study purpose was to describe the occupational and financial consequences that were important to family caregivers of a patient with colorectal cancer (CRC) in the context of public health care, which represent potential considerations for CROs. In this qualitative Interpretive Description study, we analyzed interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRC involved managing occupational implications, including (1) revamping employment arrangements, and (2) juggling work, family, and household demands. Caregiver financial struggles included (1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelong expenses. Study findings offer novel insight into the cancer-related occupational and financial challenges facing caregivers, despite government-funded universal health care. Further research is warranted to develop CRO measures that assess the multifaceted nature of these challenges.

Background The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. Results From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. Conclusions The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.

Background We recognized a paucity of accessible, evidence-based, empowering patient-centred resources for those with endometriosis-associated dyspareunia. We aimed to develop a patient-centred educational website for those affected by endometriosis-associated dyspareunia. Methods To develop a functional and meaningful website for endometriosis-associated dyspareunia, we utilized a Knowledge to Action framework, supplemented with a patient-centred research design and technology-enabled knowledge translation. Our patient partners influenced the direction and scope of the project, provided critical feedback throughout the development process, and approved website revisions prior to launch. The website was developed in five phases; 1) needs assessment interviews and focus groups with key stakeholders, 2) landscape analysis of pre-existing websites, 3) development, 4) usability testing, and qualitative interviews, and 5) revisions and launch. Results Phase 1 and 2 emphasized a need for comprehensive yet plain language explanations of pain mechanisms and strategies for pain management. Rigorous consultation with key stakeholders informed the creation of the preliminary website, which was tested in phase 4. User testing identified five main categories of usability problems, of which the majority were considered minor. Qualitative interviews identified users’ overall impressions of the preliminary website, including that the website could help people understand their pain and describe their pain to partners and healthcare providers, as well as feel empowered to seek healthcare and validated in their experiences. User suggestions, combined with usability testing informed revisions. Conclusion We developed an educational website for endometriosis-associated painful sex where people can find evidence-based etiologies for pain, pain management options, and actionable resources. Based on the data collected through qualitative interviews with patients, this website has the potential to empower people to seek health care. The strength of the website development approach used was the inclusion of qualitative user insights in addition to the commonly completed user tests. The patient interviews provided insights into the potential impact of the website and thus, ensured that we not only created a functional website that meets end users’ needs, but a website that is also meaningful to those affected by this condition.

Objective Those with chronic critical illness (CCI) remain dependent on life-sustaining treatments and increasingly reside in long-term care facilities equipped to meet their needs. The nature of family involvement in care remains undetermined thwarting approaches to mitigate poor family outcomes. The research objective was to explicate family involvement in the care of an individual with CCI who resides in long-term care. Methods In this qualitative research, we used thematic analysis and constant comparative techniques to analyze data from interviews with 38 participants: 11 family members, 6 residents with CCI, and 21 healthcare providers. Results Involvement in care entailed family: (1) reorienting their life despite the stress and emotional toll; (2) assuming responsibility for meaningful activities and management of practical matters, yet struggling alone; (3) advocating for care by being present, reminding and pushing, and picking their battles; and (4) figuring out how to contribute to nursing care, but with unclear expectations. Discussion The burden of family caregiving was substantial, contrasting the assumption that family are relieved of their caregiver responsibilities when the patient with CCI is in a care facility. Research to address unmet family needs specific to their roles and responsibilities could potentially improve family outcomes and is warranted.

Adolescent and young adult (AYA) head and neck (HN) cancer survivors are at risk of long-term complications. A cross-sectional study of survivors recalled for clinical evaluation was performed to evaluate late effects in this population.Surviving patients who had been diagnosed with HN cancer between the ages of 15 and 39 years and treated with radiation therapy (RT) in British Columbia between 1970 and 2010 were invited to participate in this study. Survivors were assessed in consultation by a radiation oncologist for a complete history and physical exam. Comprehensive data collection of subjective and objective late effects of RT and screening investigations were completed.Of 36 AYA HN participants, the majority were female (61%), and the most common tumour sites were thyroid (28%), oropharynx (17%), salivary gland (14%) and larynx (14%). Dental extractions post treatment was performed for 33% and dental implants for 17%. The majority (72%) reported xerostomia, 50% had dysphagia to solids and 25% hearing loss. Of the non-thyroid cancer patients who underwent RT to their neck, 45% developed hypothyroidism. There were 28% of participants with asymptomatic carotid stenosis and 27% with thyroid nodules; all were diagnosed after recall screening.Survivors of AYA HN cancer treated with RT reported numerous long-term complications. Comprehensive follow-up and screening guidelines should be established for this at-risk population.AYA HN cancer survivors and their primary care practitioners should be educated on screening recommendations and the risk of late effects.

Aim To explore and synthesize the literature on factors related to mammography screening adherence among women in Brazil. Design A scoping review. Methods We searched 11 databases for studies published between 2006–January 2020. All identified articles were screened, and data were extracted from eligible studies. We used the UK Government Social Research Service weight of evidence appraisal tool to appraise the quality of the included study. Results From a total of 1,384 identified articles, 22 were retained. All included studies used quantitative, non‐experimental methods and all but two studies used cross‐sectional data. Quality of evidence varied across studies. We identified 41 factors that were investigated across the set of studies. Demographic and socio‐economic factors were the most commonly investigated, with older age, urban residence, living in the southeast of Brazil, higher level of education, higher income and private health insurance most consistently associated with mammography adherence.

The 1.72 Å resolution structure of purine nucleoside phosphorylase from Geobacillus stearothermophilus, a thermostable protein of potential interest for the biocatalytic synthesis of antiviral nucleoside compounds, is reported. The structure of the N-terminally His-tagged enzyme is a hexamer, as is typical of bacterial homologues, with a trimer-of-dimers arrangement. Unexpectedly, several residues of the recombinant tobacco etch virus protease (rTEV) cleavage site from the N-terminal tag are located in the active site of the neighbouring subunit in the dimer. Key to this interaction is a tyrosine residue, which sits where the nucleoside ring of the substrate would normally be located. Tag binding appears to be driven by a combination of enthalpic, entropic and proximity effects, which convey a particularly high affinity in the crystallized form. Attempts to cleave the tag in solution yielded only a small fraction of untagged protein, suggesting that the enzyme predominantly exists in the tag-bound form in solution, preventing rTEV from accessing the cleavage site. However, the tagged protein retained some activity in solution, suggesting that the tag does not completely block the active site, but may act as a competitive inhibitor. This serves as a warning that it is prudent to establish how affinity tags may affect protein structure and function, especially for industrial biocatalytic applications that rely on the efficiency and convenience of one-pot purifications and in cases where tag removal is difficult.

The protocol for a scoping review which aims to systematically map the literature on critical illness survivorship and health equity, in terms of the relationships between socioeconomic position/social determinants of health and post-ICU survivorship outcomes; and then synthesizing the results in order to identify research gaps and research priorities for future work on critical illness survivorship

Objective: To review the literature that has examined stigma in relation to the design, impact, and ways web apps can alleviate or aggravate sexual health-related stigma. Methods: Six databases wer...

Objectives: Despite calls for better supportive care, patients and families still commonly bear significant responsibility for managing the physical and mental health and social challenges of being diagnosed with and treated for cancer. As such, there is increased advocacy for integrated supportive care to ease the burden of this responsibility. The purpose of this study was to understand patient and caregiver experiences with supportive care to advance its delivery at a large provincial cancer care organization in Canada. Method: We used a qualitative descriptive approach to analyze focus groups with patients and caregivers from seven sites across the large provincial cancer care organization. Results: Focus group participants (n = 69) included cancer patients (n = 57) and caregivers (n = 12). Participants highlighted positive and negative aspects of their experience and strategies for improvement. These are depicted in three themes: (1) improving patient and provider awareness of services, (2) increasing access, (3) enhancing coordination and integration. Participants’ specific suggestions included centralizing relevant information about services, implementing a coach or navigator to help advocate for access, and delivering care virtually. Conclusions: Participants highlighted barriers to access and made suggestions for improving supportive care that they believed would reduce the burden associated with trying to manage their cancer journey.

Adjuvant endocrine therapy (AET) is a highly efficacious treatment that significantly reduces breast cancer recurrence and mortality for women with hormone-receptor positive breast cancer. Yet, many women do not adhere to prescribed AET. The overarching aim of this research was to gain a better understanding of why a significant number of women diagnosed with breast cancer have suboptimal adherence to AET. A mixed-methods approach was used to explore the personal, social, and structural factors influencing breast cancer survivors’ AET adherence, including: (1) an integrative review of patient-reported factors associated with AET adherence; and (2) interviews with breast cancer survivors prescribed AET. In this paper, we summarize and discuss the key contributions of both phases of this research, implication for clinical practice, and how we might leverage the expertise of nurses in practicing to full scope to address the complex needs of breast cancer survivors prescribed AET.

Adherence to adjuvant endocrine therapy (AET) for breast cancer is suboptimal. The purpose of this study was to: (1) explore the experiences and perspectives of healthcare providers (HCPs) in providing care to breast cancer survivors prescribed AET, (2) identify how social and structural factors influence the provision of AET-related care, and (3) ascertain HCP recommendations for optimizing AET adherence and related care. Individual, in-depth interviews were conducted with 14 HCPs using an interpretive descriptive approach to inquiry and the theoretical lens of relational autonomy. Data was analyzed using thematic and constant comparative techniques. Healthcare providers focused on four main components of AET-related care: (1) the importance of having careful conversations about AET, (2) difficulties in navigating transitions in care, (3) symptom management as a big part of their role, and (4) dealing with AET discontinuation. Recommendations to improve AET adherence focused on developing sustainable and efficient models of delivering high-quality care to women on AET. Healthcare providers play a pivotal role educating women about AET and supporting their adherence to therapy. Sustainable healthcare system innovations and new models of care that address current system gaps are needed to enhance survivorship care, AET adherence, and ultimately, reduce cancer recurrence and mortality.

Background Endometriosis is a complex chronic disease characterized by pain, including painful sex, that can contribute to considerable sexual function, self-esteem, and relationship challenges. Digital storytelling is an arts-based, participatory methodology wherein individuals create and share their illness experiences in detailing their lived experiences. Objective The study objective was to pilot-test a web-based digital storytelling workshop focused on endometriosis to understand storytellers’ experiences of workshop participation. We assessed the feasibility of story cocreation and sharing, including the emotional impact of workshop participation, the acceptability of the workshop for the subject matter, and the storytellers’ willingness to share their stories with broader audiences as a method for knowledge translation. Methods This study used a community-based participatory methodology supplemented with patient-oriented research and integrated knowledge translation. Study participants, referred to as storytellers, cocreated 3- to 5-minute individual digital stories about their lived experiences of endometriosis during a web-based workshop (comprising five 2-hour sessions over 6 weeks) facilitated by The Center for Digital Storytelling. Data were collected through participant observations at the workshop, storyteller weekly reflective journals, and an end-of-workshop focus group interview with storytellers. These data were analyzed using a qualitative interpretive description approach. Results A total of 5 women and 1 nonbinary storyteller aged 19 to 39 years who had experienced endometriosis for 4 to 22 years participated in the study. We characterized storytelling workshop participation and the acceptability of story cocreation by describing participants’ experiences of opportunity, commitment, and connection; complex emotions that were healing; and a desire to share. Feasibility was demonstrated through 100% engagement in the workshops. All 6 storytellers reported feeling empowered by publicly sharing their cocreated digital stories through social media and the Sex, Pain & Endometriosis website. Conclusions Despite the complexities of the story-building process, the workshop and the cocreation and sharing of digital stories were feasible. The storytellers found that this process allowed for emotional healing and personal empowerment by offering a unique way to talk about painful sex, which also facilitated a connection among those in the workshop. The use of digital storytelling as a knowledge translation tool shows promise, and this approach also has potential as a therapeutic intervention.

Limited understanding of the psychological challenges experienced by individuals with chronic critical illness hampers efforts to deliver quality care. We used an interpretive description approach to explore sources of distress for individuals with chronic critical illness in residential care, wherein we interviewed six residents, 11 family members, and 21 staff. Rather than discuss physical symptoms, sources of distress for residents were connected to feeling as though they were a patient receiving medical care as opposed to an individual living in their home. The tension between medical care and the unmet need for a sense of home was related to care beyond the physical being overlooked, being dependent on others but feeling neglected, frustration with limited choice and participation in decision making, and feeling sad and alone. Efforts to refine health care for individuals with chronic critical illness must foster a sense of home while ensuring individuals feel safe and supported to make decisions.

BACKGROUND Endometriosis is a complex chronic disease characterized by pain, including painful sex, that can contribute to considerable sexual function, self-esteem, and relationship challenges. Digital storytelling is an arts-based, participatory methodology wherein individuals create and share their illness experiences in detailing their lived experiences. OBJECTIVE The study objective was to pilot-test a web-based digital storytelling workshop focused on endometriosis to understand storytellers’ experiences of workshop participation. We assessed the feasibility of story cocreation and sharing, including the emotional impact of workshop participation, the acceptability of the workshop for the subject matter, and the storytellers’ willingness to share their stories with broader audiences as a method for knowledge translation. METHODS This study used a community-based participatory methodology supplemented with patient-oriented research and integrated knowledge translation. Study participants, referred to as storytellers, cocreated 3- to 5-minute individual digital stories about their lived experiences of endometriosis during a web-based workshop (comprising five 2-hour sessions over 6 weeks) facilitated by The Center for Digital Storytelling. Data were collected through participant observations at the workshop, storyteller weekly reflective journals, and an end-of-workshop focus group interview with storytellers. These data were analyzed using a qualitative interpretive description approach. RESULTS A total of 5 women and 1 nonbinary storyteller aged 19 to 39 years who had experienced endometriosis for 4 to 22 years participated in the study. We characterized storytelling workshop participation and the acceptability of story cocreation by describing participants’ experiences of opportunity, commitment, and connection; complex emotions that were healing; and a desire to share. Feasibility was demonstrated through 100% engagement in the workshops. All 6 storytellers reported feeling empowered by publicly sharing their cocreated digital stories through social media and the Sex, Pain & Endometriosis website. CONCLUSIONS Despite the complexities of the story-building process, the workshop and the cocreation and sharing of digital stories were feasible. The storytellers found that this process allowed for emotional healing and personal empowerment by offering a unique way to talk about painful sex, which also facilitated a connection among those in the workshop. The use of digital storytelling as a knowledge translation tool shows promise, and this approach also has potential as a therapeutic intervention.

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15–39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.

Focusing on Canadian critical care nurses (CCNs), the study objectives were to examine the impact of the COVID-19 pandemic on: mental health, quality of work life, and intent to stay in their current positions.Mixed-methods study using an online cross-sectional survey and integration of closed- and open-ended survey data.Canadian CCNs working in an intensive care unit, high acuity unit, or intensive care step-down unit during the COVID-19 pandemic between May 2021 to June 2021.The survey consisted of four instruments: (1) the impact of event scale - revised, (2) the depression, anxiety, and stress scale, (3) the professional quality of life scale, and (4) intent to turnover tool, as well as one optional open-ended question.From across Canada, 425 CCNs responded. The large majority reported symptoms of post traumatic stress disorder (74%), depression (70%), anxiety (57%), and stress (61%). All (100%) reported moderate to high burnout, 87% were suffering from signs of secondary traumatic stress, and 22% intended to quit their current employment. Qualitative analysis of written comments submitted by 147 (34.5%) of the respondents depicted an immense mental health toll on CCNs that stemmed from 1) failed leadership and 2) the traumatic nature of the work environment, that led to 3) a sense of disillusionment, defeat, and an intent to leave.The mental health toll of the pandemic has been significant for Canadian CCNs and highlights the urgent need for individual supports and systems level changes.

User interface evaluation has become important in developing usable health care technologies. Although usability engineering methods have been applied in the design and evaluation of health care software, available heuristics focus on task-work aspects and do not address stigma associated with many health conditions. We used a previous set of heuristics and propose a new set of anti-stigma heuristics to evaluate stigmatization in health care websites. The extended set of heuristics were concurrently applied in a heuristic evaluation and a cognitive walkthrough to evaluate an endometriosis and sexual pain website. The walkthrough involved 5 tasks that required 21 actions to execute. Twenty-six usability problems were identified and recommendations for re-design were made to the design team before end-user testing. The anti-stigma heuristics received worse ratings than the traditional heuristics, resulting in several design changes that might otherwise have been missed. Thus, the new anti-stigma heuristics were a valuable contribution.

User interface evaluation has become important in developing usable health care technologies. Although usability engineering methods have been applied in the design and evaluation of health care software, available heuristics focus on task-work aspects and do not address stigma associated with many health conditions. We used a previous set of heuristics and propose a new set of anti-stigma heuristics to evaluate stigmatization in health care websites. The extended set of heuristics were concurrently applied in a heuristic evaluation and a cognitive walkthrough to evaluate an endometriosis and sexual pain website. The walkthrough involved 5 tasks that required 21 actions to execute. Twenty-six usability problems were identified and recommendations for re-design were made to the design team before end-user testing. The anti-stigma heuristics received worse ratings than the traditional heuristics, resulting in several design changes that might otherwise have been missed. Thus, the new anti-stigma heuristics were a valuable contribution.

Colorectal cancer (CRC) can be demanding for primary caregivers, yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers’ assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient’s life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.

BACKGROUND Endometriosis is a chronic condition that affects approximately 10% of women worldwide. Despite its wide prevalence, knowledge of endometriosis symptoms, such as pelvic pain, and treatments remains relatively low. This not only leads to a trivialization of symptoms and delayed diagnosis but also fuels myths and misconceptions about pain symptoms. At the same time, the use of web-based platforms for information seeking is particularly common among people with conditions that are perceived as stigmatizing and difficult to discuss. The Sex, Pain, and Endometriosis website is an educational resource designed to provide evidence-based information on endometriosis and sexual pain to help people understand the condition, feel empowered, dispel myths, and destigmatize endometriosis-associated sexual pain. OBJECTIVE The study objective is to evaluate the usability of the website and assess for destigmatizing properties of sexual health–related web-based resources. METHODS We conducted a usability analysis by using a think-aloud observation, a postsystem usability questionnaire, and follow-up interviews with 12 women with endometriosis. The think-aloud data were analyzed using the framework by Kushniruk and Patel for analyzing usability video data, the questionnaire data were analyzed using descriptive statistics, and the follow-up interviews were analyzed using simple content analysis. We conducted a usability assessment by deductively analyzing the interview data via a trauma-informed care framework and a content analysis approach. RESULTS Through usability analysis, we found the website to be simple, uncluttered, satisfying, and easy to use. However, 30 minor usability problems related to navigation; website response; the comprehension of graphics, icons, and tabs; the understanding of content; and mismatch between the website and users’ expectations were reported. In our stigma analysis, we found the web content to be nonstigmatizing. The participants suggested ways in which websites could be designed to address stigma, including ensuring privacy, anonymity, inclusiveness, and factual and nonjudgmental content, as well as providing opportunities for web-based engagement. CONCLUSIONS Overall, the participants found the website to be useful, easy to use, and satisfying. The usability problems identified were largely minor and informed the website redesign process. In the context of the limited literature on stigma and website design, this paper offers useful strategies on how sexual health–related websites can be designed to be acceptable and less stigmatizing to individuals with sensitive health issues. CLINICALTRIAL

Adjuvant endocrine therapy (AET) is a highly efficacious treatment that significantly reduces breast cancer recurrence and mortality for women with hormone-receptor positive breast cancer. Yet, many women do not adhere to prescribed AET. The overarching aim of this research was to gain a better understanding of why a significant number of women diagnosed with breast cancer have suboptimal adherence to AET. A mixed-methods approach was used to explore the personal, social, and structural factors influencing breast cancer survivors’ AET adherence, including: (1) an integrative review of patient-reported factors associated with AET adherence; and (2) interviews with breast cancer survivors prescribed AET. In this paper, we summarize and discuss the key contributions of both phases of this research, implication for clinical practice, and how we might leverage the expertise of nurses in practicing to full scope to address the complex needs of breast cancer survivors prescribed AET.

Chez les femmes atteintes d’un cancer du sein à récepteurs hormonaux positifs, l’endocrinothérapie adjuvante est très efficace pour réduire le risque de récidive et de mortalité. Pourtant, ce ne sont pas toutes les femmes qui se conforment au traitement. L’objectif principal de cette recherche était de mieux comprendre pourquoi de nombreuses femmes ayant reçu un diagnostic de cancer du sein n’adhèrent pas au traitement adjuvant. Une approche méthodologique mixte a été utilisée afin d’explorer les facteurs personnels, sociaux et structurels qui influencent l’adhésion à l’endocrinothérapie adjuvante chez les survivantes du cancer du sein. L’approche comprend : 1) une revue intégrative des facteurs mentionnés par les patientes pour expliquer l’adhésion au traitement endocrinien; et 2) des entretiens avec des survivantes du cancer du sein à qui on a prescrit le traitement adjuvant. Le présent article résume et présente les principales contributions des deux phases de cette recherche, les implications pour la pratique clinique et la manière dont nous pourrons tirer parti de l’expertise des infirmières en les amenant à exercer pleinement leur pratique pour répondre aux besoins complexes des survivantes du cancer du sein à qui l’on prescrit l’endocrinothérapie adjuvante.

Aim The study aimed to investigate the associations between glycaemic control after acute pancreatitis and gastrointestinal motility, using plasma motilin concentration and gastroparesis cardinal symptom index score as proxies. Methods This cross-sectional study recruited a total of 93 individuals after acute pancreatitis. Gastroparesis cardinal index scores, demographic and anthropometric factors, as well as pancreatitis-related factors were analysed. Fasting venous blood was collected to measure motilin, glycated haemoglobin, and fasting blood glucose. Linear regression analyses were conducted to investigate the associations between glycaemic control and gastrointestinal motility in unadjusted and adjusted models. Results Motilin was significantly higher in individuals with diabetes across all adjusted models, with the highest ß-coefficient (95% confidence interval) of 588.89 (138.50, 1039.28); P=0.010. Fasting blood glucose was significantly associated with motilin across all models, with the highest ß-coefficient (95% confidence interval) of 156.30 (55.49, 257.10); P=0.002. Glycated haemoglobin was significantly associated with motilin in one adjusted model with ß-coefficient (95% confidence interval) of 18.78 (1.53, 36.02); P=0.033. Gastroparesis cardinal symptom index was not significantly associated with any measure of glycaemic control. Conclusions Diabetes in individuals after acute pancreatitis appears to be characterised by elevated plasma motilin but not gastroparesis cardinal symptom index. The role of motilin in this setting warrants further investigations.

Background While 80% of critically ill patients treated in an intensive care unit (ICU) will survive, survivors often suffer a constellation of new or worsening physical, cognitive, and psychiatric complications, termed post-intensive care syndrome. Emerging evidence paints a challenging picture of complex, long-term complications that are often untreated and culminate in substantial dependence on acute care services. Clinicians and decision-makers in the Fraser Health Authority of British Columbia are working to develop evidence-based community healthcare solutions that will be successful in the context of existing healthcare services. The objective of the proposed review is to provide the theoretical scaffolding to transform the care of survivors of critical illness by a synthesis of relevant clinical and healthcare service programs. Methods Realist review will be used to develop and refine a theoretical understanding of why, how, for whom, and in what circumstances post-ICU program impact ICU survivors’ outcomes. This review will follow the recommended five steps of realist review which include (1) clarifying the scope of the review and articulating a preliminary program theory, (2) searching for evidence, (3) appraising primary studies and extracting data, (4) synthesizing evidence and sharing conclusions, and (5) disseminating and implementing recommendations. Discussion This realist review will provide a program theory, encompassing the contexts, mechanisms, and outcomes, to explain how clinical and health service interventions to improve ICU survivor outcomes operate in different contexts for different survivors, and with what effect. This review will be an evidentiary pillar for health service development and implementation by our knowledge user team members as well as advance scholarly knowledge relevant nationally and internationally. Systematic review registration PROSPERO CRD42018087795 Electronic supplementary material The online version of this article (10.1186/s13643-018-0939-7) contains supplementary material, which is available to authorized users.

e18536 Background: Despite advances in research and treatment, and a publicly funded healthcare system in Canada, alarming inequities exist across the cancer continuum. Although attention to these inequities is increasing, it is unclear how organizations are acting upon calls to address health equity. Our objective was to identify how health and healthcare equity are being discussed as a goal or aim within the Canadian cancer care sector. Methods: A rapid scoping review was conducted for published and unpublished literature on health equity in the Canadian cancer care sector. As this review was part of a larger initiative aimed at informing policy recommendations and research priorities with specific time constraints, we also drew on the WHO’s guidance for conduct of rapid reviews to strengthen health policy and systems. Five biomedical databases, 30 public health and multidisciplinary websites and databases, and Google were searched. Documents available in English, published between 2008 and 2021, and that discussed health or healthcare equity in the Canadian cancer context were included. Results: Of 3,678 documents screened, 83 were included for full text analysis. The focus on health equity within the Canadian cancer care sector increased 3-fold between 2015-2021 when compared with the period 2008-2014. Only 25% of documents included a definition of health equity. Concepts such as inequity, inequality, and disparity were frequently used interchangeably or in a tokenistic way, resulting in conceptual muddling. Less than half of documents included an explicit health equity goal. Stated health equity goals ranged from broad to specific, with examples from across the cancer continuum. A range of actions were described to address equity goals, including health system improvements and policy and planning considerations. Most actions were framed as recommendations rather than actions taken or underway, and few documents described measurement of progress toward health equity goals. Conclusions: Health equity is a growing priority in the cancer care sector, however conceptual clarity is needed to guide the development of robust equity goals, specific objectives, and meaningful action. Moreover, evaluation mechanisms to understand the impacts of actions on equity goals are urgently needed. If we are to advance health equity in the cancer care sector, a coordinated and integrated approach will be required to enact transformative and meaningful change.

A retrospective review of adolescent and young adult (AYA) head and neck cancer (HNC) patients treated with radiation therapy (RT) at British Columbia Cancer was performed to determine the incidence of late toxicities, the documented late side effects discussed and the screening recommendations provided at the time of transfer of care to primary care providers (PCPs). Charts (n = 162) were reviewed for all patients 15 to 35 years at diagnosis with HNC treated with RT from 1960 to 2010 who survived > 5 years after diagnosis. A discussion regarding the risk of long-term side effects was documented in the initial consultation for 85% of patients. The majority of patients (78%) developed > 1 documented late effect. The most common were xerostomia (44%), skin changes (28%), neck fibrosis (22%), nasal crusting (16%), epistaxis (16%), and dental decay (14%). In all, 20% were currently followed or were followed until they died. Of the 80% transferred to their PCP, 14% had a formal discharge summary. For those discharged from British Columbia Cancer, documented recommendations included regular dental care (34%) and screening for hypothyroidism (5%) and second malignancy (4%). The majority of AYA HNC patients treated with RT developed late side effects, and most PCPs were not sent a discharge summary outlining screening recommendations for delayed late effects. AYA HNC survivors treated with RT are at high risk for late effects and would benefit from a survivorship care plan outlining these risks and screening recommendations.

Background: Substantial literature has highlighted the importance of patient-reported outcome and experience measures (PROMs and PREMs, respectively) to collect clinically relevant information to better understand and address what matters to patients. The purpose of this systematic review is to synthesize the evidence about strategies for implementing individual-level PROMs and PREMs data by healthcare providers in their everyday practice.Methods: This mixed method systematic review protocol describes the design of our synthesis of the peer-reviewed research evidence (i.e., qualitative, quantitative, and mixed methods), systematic reviews, organizational implementation projects, expert opinion, and grey literature. Keyword synonyms for “PROMs,” PREMs,” and “implementation” will be used to search eight databases with limiters of English from 2009 to 2019. Study selection criteria includes implementation at the point-of-care by healthcare providers in any practice setting. Eligible studies will be critically appraised using validated tools (e.g., Joanna Briggs Institute). Guided by the review questions, data extraction and synthesis will occur simultaneously to identify biographical information and methodological characteristics as well as classify study findings related to implementation processes and strategies. As part of the narrative synthesis approach, two frameworks will be utilized: (a) Consolidated Framework for Implementation Research (CFIR) to identify influential factors of PROMs and PREMs Implementation and (b) Expert Recommendations for Implementing Change (ERIC) to illicit strategies. Data management will be undertaken using NVivo 12TM. Discussion: Data from PROMs and PREMs are critical to adopt a person-centred approach to healthcare. Findings from this review will guide subsequent phases of a larger project that includes interviews and a consensus-building forum with end users to create guidelines for implementing PROMs and PREMs at the point of care. Systematic Review Registration: PROSPERO protocol registration number (42013005938).

Individuals with chronic critical illness experience multiple complex physiological disturbances including ongoing respiratory failure, requiring prolonged mechanical ventilation, and thus communication impairments. In conducting a qualitative interpretive description study, we sought to ensure that individuals with chronic critical illness themselves were included as participants. Our commitment to recruiting these individuals to the study and ensuring their data meaningfully informed the analysis and findings required us to reconsider and challenge some of the traditional notions of high-quality qualitative research and develop appropriate practical strategies. These strategies included: (1) centering participant abilities and preferences, (2) adopting a flexible approach to conducting interviews, (3) engaging in a therapeutic relationship, and (4) valuing “thin” data. In this article, we extend existing literature describing the complexities of conducting research with individuals with communication impairments and strategies to consider in the hopes of informing future research with other populations historically excluded from study participation.

Background Those who survive critical illness only to become chronically critically ill (CCI) experience a high symptom burden, repeat episodes of illness exacerbation, communication barriers, and poor health outcomes. Yet, it is unclear how CCI individuals and their family understand their health and the importance of prognostic information following hospitalization. The research purpose was to examine expectations about health and disease prognosis of CCI residents in long-term care from the perspectives of the CCI themselves and their family members, as well as to describe healthcare provider (HCP) interpretations of, and reactions to, these health-related expectations. Methods In this qualitative interpretive descriptive study, conducted in British Columbia, Canada, 38 semi-structured interviews were conducted (6 CCI residents, 11 family members, and 21 HCPs) and inductively analyzed using thematic and constant comparative techniques. Results There was divergence in CCI resident, family and HCP expectations about health and the importance of disease prognosis, which contributed to conflict. CCI residents and family viewed conflict with HCPs in relation to their day-to-day care needs, while HCPs viewed this as arising from the unrealistically high expectations of residents and family. The CCI residents and family focussed on the importance of maintaining hope, and the HCPs highlighted the complexity of end-of-life decisions in conjunction with the high expectations and hopes of family. Conclusions The emotional and ongoing process of formulating health-related expectations points to the need for future research to inform the development and/or adapting of existing communication, psychosocial and health services interventions to ease the burden experienced by those who are CCI.

Additional file 1.

Additional file 2. PRISMA-P Checklist.

Additional file 1. Summary of Published Systematic and Scoping Reviews about Healthcare Providers Using PCM in Routine Practice.

Additional file 4. Example of Search Strategy in Bibliographic Database.

Background Endometriosis is a chronic condition that affects approximately 10% of women worldwide. Despite its wide prevalence, knowledge of endometriosis symptoms, such as pelvic pain, and treatments remains relatively low. This not only leads to a trivialization of symptoms and delayed diagnosis but also fuels myths and misconceptions about pain symptoms. At the same time, the use of web-based platforms for information seeking is particularly common among people with conditions that are perceived as stigmatizing and difficult to discuss. The Sex, Pain, and Endometriosis website is an educational resource designed to provide evidence-based information on endometriosis and sexual pain to help people understand the condition, feel empowered, dispel myths, and destigmatize endometriosis-associated sexual pain. Objective The study objective is to evaluate the usability of the website and assess for destigmatizing properties of sexual health–related web-based resources. Methods We conducted a usability analysis by using a think-aloud observation, a postsystem usability questionnaire, and follow-up interviews with 12 women with endometriosis. The think-aloud data were analyzed using the framework by Kushniruk and Patel for analyzing usability video data, the questionnaire data were analyzed using descriptive statistics, and the follow-up interviews were analyzed using simple content analysis. We conducted a usability assessment by deductively analyzing the interview data via a trauma-informed care framework and a content analysis approach. Results Through usability analysis, we found the website to be simple, uncluttered, satisfying, and easy to use. However, 30 minor usability problems related to navigation; website response; the comprehension of graphics, icons, and tabs; the understanding of content; and mismatch between the website and users’ expectations were reported. In our stigma analysis, we found the web content to be nonstigmatizing. The participants suggested ways in which websites could be designed to address stigma, including ensuring privacy, anonymity, inclusiveness, and factual and nonjudgmental content, as well as providing opportunities for web-based engagement. Conclusions Overall, the participants found the website to be useful, easy to use, and satisfying. The usability problems identified were largely minor and informed the website redesign process. In the context of the limited literature on stigma and website design, this paper offers useful strategies on how sexual health–related websites can be designed to be acceptable and less stigmatizing to individuals with sensitive health issues.

Introduction Mammography screening is provided free of charge for the recommended target population in Brazil but participation rates have remained low, and breast cancer mortality has continued to increase. Thus, it is important to identify factors that are associated with poor participation in mammography screening so that service providers can target health promotion messages and screening programs more effectively. Objective: To evaluate the predictive validity of the Revised Champion’s Health Belief Model scale (RCHBMS) for identifying women at high risk of not adhering to national guidelines for mammography screening in Brazil. Methods: We used a longitudinal survey design with a 1-year follow-up data from 194 women living in northeastern Brazil, in the city of Fortaleza, Ceará, participants completed the RCHBMS at baseline, and mammography uptake was measured 1 year later. Hierarchical logistic regression was used to determine the predictive validity of the RCHBMS for identifying women who had not adhered to recommendations for mammography screening, after accounting for the women’s sociodemographic and clinical characteristics. The sensitivity and specificity of various cut-off points were calculated to determine the optimal cut-off point for identifying women at high risk of not adhering to mammography screening guidelines. Results: Two subscales of the RCHBMS uniquely predicted nonadherence: susceptibility and barriers, along with race and family history of cancer. The total scale score (with barriers reverse coded) was also highly predictive. For our sample, using only the RCHBMS with a cutoff of ≤ 3.67 (out of a total possible range of 1–5) yielded a high sensitivity and specificity for predicting nonadherence. Conclusion: Study findings support the validity and clinical utility of the RCHBM for identifying women at risk of not adhering to national guidelines for mammography screening in Brazil.

Background Through the British Columbia, Prospective Outcomes and Support Initiative (POSI), registered nurses collect patient-reported outcome (PRO) data during telephone follow-up with palliative oncology patients. Objective The research objective was to describe the usefulness and influence of the nursing care provided through POSI follow-up on palliative patients and health services. Methods We used a qualitative interpretive description approach involving the collection and analysis of semistructured interview data with 20 palliative patients and 12 oncology nurses. All participant data were subjected to an inductively derived coding framework. Analytic categories were identified and iteratively revised through constant comparative techniques to develop representative themes. Results The accounts of patients and nurses suggest that telephone follow-up with PROs enabled the nurses to (1) focus on the priorities of patients experiencing complex health challenges, (2) manage complex symptoms, (3) ease the patient's transition home, and (4) improve access to and use of health services. Suggestions for improving POSI nurse follow-up centered on flexibility in the timing of the follow-up, creating dedicated POSI work assignments, and having additional time to personalize assessments and nursing care beyond the PRO questionnaires. Conclusions Nursing care employing PROs via telephone follow-up can improve palliative cancer patients' quality of life and health service use. Implications for practice Nurses are optimally positioned to use PROs following cancer treatment completion but require organizational resources and support to optimize patient and system outcomes.

Introduction: Motilin was first alluded to nearly a century ago. But it remains a rather abstruse peptide, in the shadow of its younger but more lucid 'cousin' ghrelin.Areas covered: The review aimed to bring to the fore multifarious aspects of motilin research with a view to aiding prioritization of future studies on this gastrointestinal peptide.Expert opinion: Growing evidence indicates that rodents (mice, rats, guinea pigs) do not have functional motilin system and, hence, studies in these species are likely to have a minimal translational impact. Both the active peptide and motilin receptor were initially localized to the upper gastrointestinal tract only but more recently - also to the brain (in both humans and other mammals with functional motilin system). Motilin is now indisputably implicated in interdigestive contractile activity of the gastrointestinal tract (in particular, gastric phase III of the migrating motor complex). Beyond this role, evidence is building that there is a cross-talk between motilin system and the brain-pancreas axis, suggesting that motilin exerts not only contractile but also orexigenic and insulin secretagogue actions.

Supplemental material, sj-pdf-1-qhr-10.1177_1049732320976373 for Sources of Distress for Residents With Chronic Critical Illness and Ventilator Dependence in Long-Term Care by A. Fuchsia Howard, Sarah Crowe, Laura Choroszewski, Joe Kovatch, Adrianne J. Haynes, Joan Ford, Scott Beck and Gregory J. Haljan in Qualitative Health Research

Resumo Objetivo Realizar tradução e adaptação transcultural da Champion’s Health Belief Model Scale (CHBMS) para uso no Brasil, no rastreamento mamográfico, e verificar as evidências de validade da versão brasileira desta escala. Métodos Estudo metodológico, realizado com 206 mulheres frequentadoras de unidade básica de saúde, na cidade de Fortaleza-CE, Brasil, de agosto de 2015 a dezembro de 2017. A escala passou por processo de tradução e adaptação transcultural, incluindo validação de face e conteúdo. Posteriormente, foram verificadas as evidências de validade (1.Validade baseada na estrutura interna, avaliada mediante análise exploratória, com rotação ortogonal varimax e retenção de fatores por análises paralelas; 2. Confiabilidade, a partir da homogeneidade por alfa de Cronbach e estabilidade por teste-reteste). Resultados Na validação de face e conteúdo, o instrumento apresentou boa aceitação entre os juízes e o público-alvo. O modelo final da análise fatorial exploratória resultou em escala com sete itens, divididos em três domínios, com variância explicada de 71,4%, com alfa de Cronbach variando de 0,50 a 0,88. Para confiabilidade da escala, o r de Pearson e o ρ de Spearman mostraram alta confiabilidade (0,997 e 0,986). Conclusão A versão brasileira da Champion’s Health Belief Model Scale apresenta boas evidências de validade baseada na estrutura interna e é confiável, podendo ser empregada no Brasil para avaliação do monitoramento da adesão à mamografia. Resumen Objetivo Realizar la traducción y adaptación transcultural de la Champion’s Health Belief Model Scale (CHBMS) para su aplicación en Brasil en el rastreo mamográfico y para verificar las evidencias de validez de la versión brasileña de esta escala. Métodos Estudio metodológico, realizado con 206 mujeres que asistían con frecuencia a una unidad básica de salud, en la ciudad de Fortaleza, estado de Ceará, Brasil, de agosto de 2015 a diciembre de 2017. La escala pasó por un proceso de traducción y adaptación transcultural, que incluyó validación aparente y de contenido. Posteriormente, se verificaron las evidencias de validez (1. Validez basada en la estructura interna, evaluada mediante análisis exploratorio, con rotación ortogonal varimax y retención de factores por análisis paralelos; 2. Confiabilidad a partir de la homogeneidad por alfa de Cronbach y estabilidad por test-retest). Resultados En la validación aparente y de contenido, el instrumento presentó buena aceptación entre los jueces y el público destinatario. El modelo final del análisis factorial exploratorio tuvo como resultado una escala con siete ítems, divididos en tres dominios, con varianza explicada de 71,4%, con alfa de Cronbach que varía de 0,50 a 0,88. En la confiabilidad de la escala, el r de Pearson y el ρ de Spearman demostraron alta confiabilidad (0,997 y 0,986). Conclusión La versión brasileña de la Champion’s Health Belief Model Scale presenta buenas evidencias de validez basada en la estructura interna y es confiable, por lo que puede emplearse en Brasil para evaluar el monitoreo de la adherencia a la mamografía. Abstract Objective Performing translation and cross-cultural adaptation of the Champion’s Health Belief Model Scale (CHBMS) for use in Brazil for mammographic screening, and verify the validity evidence of the Brazilian version of this scale. Methods Methodological study, conducted with 206 women attending a Basic Health Unit, in the city of Fortaleza, state of Ceará, Brazil, from August 2015 to December 2017. The scale went through a process of translation and cross-cultural adaptation, including face and content validation. Afterwards, validity evidence was verified (1.Vality based on internal structure, assessed by exploratory analysis, with varimax orthogonal rotation and retention of factors by parallel analyzes; 2. Reliability from Cronbach’s alpha homogeneity and test-retest stability). Results In face and content validation, the tool showed good acceptance among the judges and the target audience. The final exploratory factor analysis model resulted in a seven-item scale, divided into three domains, with an explained variance of 71.4%, with Cronbach’s alpha ranging from 0.50 to 0.88. For scale reliability, Pearson r and Spearman ρ showed high reliability (0.997 and 0.986). Conclusion The Brazilian version of Champion’s Health Belief Model Scale provides good evidence of validity based on internal structure and is reliable. It may be used in Brazil to assess mammography compliance monitoring.

Supplemental material, sj-pdf-1-qhr-10.1177_1049732320976373 for Sources of Distress for Residents With Chronic Critical Illness and Ventilator Dependence in Long-Term Care by A. Fuchsia Howard, Sarah Crowe, Laura Choroszewski, Joe Kovatch, Adrianne J. Haynes, Joan Ford, Scott Beck and Gregory J. Haljan in Qualitative Health Research

The BC Cancer Agency Radiotherapy (RT) program started the Prospective Outcomes and Support Initiative (POSI) at all six centres to utilize patient-reported outcomes for immediate clinical care, quality improvement, and research. Patient-reported outcomes were collected at time of computed tomography simulation via tablet and 2 to 4 weeks post-RT via either tablet or over the phone by a registered nurse. From 2013 to 2016, patients were approached on 20,150 attempts by POSI for patients treated with RT for bone metastases (52%), brain metastases (11%), lung cancer (17%), gynecological cancer (16%), head and neck cancer (2%), and other pilots (2%). The accrual rate for all encounters was 85% (n = 17,101), with the accrual rate varying between the lowest and the highest accruing centre from 78% to 89% ( P < .001) and varying by tumour site ( P < .001). Using the POSI database, we have performed research and quality improvement initiatives that have changed practice.

Background Adjuvant endocrine therapy (AET) significantly reduces recurrence and mortality in women with breast cancer (BrCa). Despite the efficacy of AET in improving BrCa outcomes, up to 50% of women do not adhere to prescribed AET regimens. While numerous demographic and clinical predictors influence adherence and persistence, few studies have identified the patient-reported factors that influence AET adherence and persistence. Purpose The aim was to examine the patient-reported personal, social, and structural factors influencing BrCa survivors' adherence and persistence with AET. Methods An integrative review was undertaken wherein PubMed, Medline, CINAHL, Embase, and PsycINFO databases were searched using keyword descriptors and database subject headings. Inclusion criteria included quantitative or qualitative peer-reviewed studies written in English that assessed AET adherence and/or persistence through objective measurement or self-report and included patient-reported factors found to influence adherence and/or persistence. The data extracted from eligible studies were entered into a matrix, and systematically compared and iteratively analyzed using relational autonomy as an organizing theoretical framework. Results A total of 43 manuscripts (9 qualitative and 34 quantitative) were reviewed. Several personal, social, and structural factors were identified that influenced AET adherence and persistence, including side effects, necessity beliefs, self-efficacy, the patient-healthcare provider relationship, social support, and continuity of follow-up care. Conclusions An increasing number of studies have focused on identifying the patient-reported factors that influence AET adherence and persistence. This review highlights important personal, social, and structural factors that act as facilitators and barriers in adhering to and persisting with long-term AET. Acknowledging and addressing these factors is key to providing women with the care needed to improve suboptimal adherence and persistence.