CAPO and CANO joining forces to advance a national psychosocial oncology advocacy agenda.

Patient advocacy remains a key priority within the Canadian Association of Psychosocial Oncology (CAPO) and the Canadian Association of Nurses in Oncology (CANO). Optimizing collaboration across advocacy organizations, institutions, and other stakeholders is timely as we enter an era where patients and their caregivers' voices are front and centre. In this paper, we report on ongoing efforts to advance patient advocacy - broadly defined as processes and behaviours related to proactively supporting a cause - herein specific to cancer care. Through active partnering, both organizations are well positioned to push for a representative and inclusive national psychosocial oncology advocacy agenda.

Cancer information-seeking profiles: A self-report measure of patients' distinct preferences for information about their cancer.

Objective: Contemporary cancer care approaches, such as value- and strengths-based health care, involve integrating patients' needs and preferences, as the cancer experience unfolds. Distinct cancer information-seeking behaviours among patients are increasingly found to influence patient-provider communication, treatment-related decision-making, health processes and outcomes, as well as patient satisfaction with cancer care services. My program of research has already documented diverse cancer information-seeking profiles (CISP) among patients. These profiles can easily be captured by a theory-driven and empirically sound self-report single-item measure presented herein. Methods: Guided by Self-Evaluation Theory (SET) - which posits that individuals vary in their motivation to seek information about the self - quantitative work established that SET motives could be reproduced in health-related contexts (N = 600). Qualitative inquiry subsequently explored information-seeking among individuals with various cancer diagnoses. Based on this series of studies, a CIPS measure (containing a general question which prompts individuals to choose the most representative statement based on five descriptions of distinct informational profiles) was tested in a large sample of individuals with diverse cancers. Results: In this latter sample (N = 2,142), patients were administered the CISP and the Ambulatory Oncology Patient Satisfaction Survey (AOPSS). The most frequently reported CISP was complementary (50.2%, i.e., search for cancer information that added to what patients already knew), followed by minimal (25.2%, i.e., no search for cancer information), then guarded (14.4%, i.e., avoiding negative and only seeking hopeful cancer information), peer-focused (6.4%, i.e., search for cancer information from similar others), and last, intense (3.8%, i.e., seeking as much cancer information as possible). These profiles were also differentially related to care satisfaction with intense profiles being the least satisfied across all cancer care domains. Conclusions and Practice Implications: The CISP measure can readily assess patients' profiles in the search for (or avoidance of) information about their cancer so that more personalized interventions can be provided. Future research exploring how CISP evolves, as the cancer experience unfolds, is also worthy of further study.

Exploring healthcare professionals' experiences with informal family cancer caregiving.

Caring for a family member with cancer is often associated with significant cognitive, emotional, and physical demands. Although considerable research has explored informal cancer caregiver role burden, research has seldom focused on the experiences of individuals who hold the dual role of informal caregiver and healthcare professional. This qualitative study begins to explore this dual role experience. Participants (N = 12) who had at least 1 year of prior professional experience and cared for a family member with cancer were recruited conveniently from a large university-affiliated hospital in Montreal, Quebec. Individual face-to-face semi-structured interviews were conducted. Using thematic analysis, key themes were developed from verbatim transcripts: (1) salient dual role advantages, (2) significant challenges related to this role, (3) changes in professional practice as a consequence of informal caregiving, and (4) important palliative and end-of-life care access issues. Whereas professional knowledge helped advocate on behalf of patients, the dual role often came with over-solicitation from others, enhanced sense of responsibility, increased burden, and significant distress. Further study of critical ramifications linked to jointly enacting informal and professional caregiving across various health contexts should continue to inform supportive care strategies for this understudied yet increasingly prevalent segment of the caregiver population.

Women with breast cancer's perceptions of nurse-led telephone-based motivational interviewing consultations to enhance adherence to adjuvant endocrine therapy: a qualitative study.

BACKGROUND: Daily adjuvant endocrine therapy (AET) for 5 or 10 years is the standard of care for women diagnosed with non-metastatic hormone receptor-positive breast cancer. However, many women experience AET-related issues that may hamper quality of life and adherence. Here, we aimed to describe women's perceptions of motivational interviewing (MI)-guided consultations delivered by a trained nurse navigator over the telephone to enhance AET adherence. METHODS: Eighteen women who were first prescribed AET for non-metastatic breast cancer in the last 5 years, who self-reported AET-related issues, and who participated in at least two MI-guided consultations over a year were interviewed about their perceptions of the intervention, using a semi-structured interview guide. Audio recordings were transcribed verbatim and analyzed using a thematic analysis approach. RESULTS: Three main themes emerged from the data about women's perceptions on MI-guided consultations. These consultations were described as (1) a person-centred experience, (2) providing key information about AET, and (3) supportive of present and future AET experience, by contributing to AET side-effect management, motivation, adherence, calming negative emotions, improving well-being and self-esteem, and making women to feel empowered. CONCLUSIONS: Nurse-led telephone-based MI-guided consultations about AET were found to respond to participants' needs and to enhance participants' perceptions of being informed and being supported in experiencing various facets of AET. Telephone-based consultations for AET are perceived as a promising strategy in an increasing virtual care world.

Patients' cancer care perceptions conceptualized through the Cancer Experience Measurement Framework.

BACKGROUND: Research on patients' perceptions of cancer care often documents sub-optimal experiences. Cancer care quality issues include restricted service access, lack of care coordination, gaps in follow-up and "generic" rather than person-centered care. Recent reports underscore that proactively and periodically seeking user feedback is crucial for timely care quality improvement. The present study aimed to analyze and thematically organize a large amount of feedback from patients who had been treated for cancer within the last 6 months. METHODS: Randomly selected participants (N = 3,278) from 3 University-affiliated cancer centres in Montreal, Quebec, Canada completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and an open-ended question on their perceptions of the care they received. 692 participants responded to the latter. Guided by the Cancer Experience Measurement Framework (CEMF), their feedback was analyzed using a qualitative thematic approach. RESULTS: Cancer care perceptions included sub-themes of care access and coordination, continuity/transition, and perceived appropriateness/personalisation of care. The most salient theme was captured by care access and coordination with 284 comments (44%) directly addressing these issues. The ways in which health care services were structured including setting, schedule, and location were often raised as cause for concerns. Issues surrounding cancer information/education, emotional support, and physical comfort were frequently reported as unmet needs. In addition, limited access to cancer services led patients to seek alternatives such as going to emergency departments and/or private care. CONCLUSIONS: These findings are timely as they show that most patients are well aware of quality issues in cancer care and are willing to report candidly on these. Patient feedback also underscore the importance for cancer care institutions to periodically gather patient-reported data so that systems can re-calibrate their service offerings according to these data. Ultimately, patient reports will translate into enhanced quality, personalization, and safer cancer care provision.

Women's perceptions of PERSPECTIVE: a breast cancer risk stratification e-platform.

BACKGROUND: Breast cancer risk stratification categorizes a woman's potential risk of developing the disease as near-population, intermediate, or high. In accordance, screening and follow up for breast cancer can readily be tailored following risk assessment. Recent efforts have focussed on developing more accessible means to convey this information to women. This study sought to document the relevance of an informational e-platform developed for these purposes. OBJECTIVE: To begin to assess a newly developed breast cancer risk stratification and decision support e-platform called PERSPECTIVE (PErsonalised Risk Stratification for Prevention and Early deteCTIon of breast cancer) among women who do not know their personal breast cancer risk (Phase 1). Changes (pre- and post- e-platform exposure) in knowledge of breast cancer risk and interest in undergoing genetic testing were assessed in addition to perceptions of platform usability and acceptability. METHODS: Using a pre-post design, women (N = 156) of differing literacy and education levels, aged 30 to 60, with no previous breast cancer diagnosis were recruited from the general population and completed self-report e-questionnaires. RESULTS: Mean e-platform viewing time was 18.67 min (SD 0.65) with the most frequently visited pages being breast cancer-related risk factors and risk assessment. Post-exposure, participants reported  significantly higher breast cancer-related knowledge (p < .001). Increases in knowledge relating to obesity, alcohol, breast density, menstruation, and the risk estimation process remained even when sociodemographic variables age and education were controlled. There were no significant changes in genetic testing interest post-exposure. Mean ratings for e-platform acceptability and usability were high: 26.19 out of 30 (SD 0.157) and 42.85 out of 50 (SD 0.267), respectively. CONCLUSIONS: An informative breast cancer risk stratification e-platform targeting healthy women in the general population can significantly increase knowledge as well as support decisions around breast cancer risk and assessment. Currently underway, Phase 2, called PERSPECTIVE, is seeking further content integration and broader implementation .

Bone fragility related to breast cancer treatment: The pivotal role of nurses in bone health program development, implementation, and testing.

Breast cancer treatment can affect estrogen levels leading to significant bone loss, osteoporosis, and risks for fracture. Although bone care guidelines are published, bone health interventions are often not routinely offered to at-risk individuals. This paper reports on the process of developing and implementing a nurse-led bilingual Breast and Bone Health Program (BBHP) in-person and online at a cancer centre in Montreal, Quebec (www.breastandbonehealth.ca, www.santeseinsetos.ca). The BBHP offers tailored bone health interventions (e.g., risk screening, information, rehabilitation, exercise prescriptions, nutritional counselling, and support for a health-promoting lifestyle). Over a two-year period, women treated for breast cancer (N = 430) took part in the program. Forty percent of surveyed participants (n = 97) initally reported being unaware that some breast cancer treatment could significantly affect bone health. Following the initial informational session with the BBHP nurse, self-reported bone health knowledge significantly increased, with 96% reporting sufficient information to manage their bone health. The BBHP offers both online and in-person risk assessment and bone health promotion activities and tools to both health care professionals and women with breast cancer. Herein, we review the background, BBHP development and implementation as well as preliminary program evaluation.

Interactive online informational and peer support application for patients with low anterior resection syndrome: patient survey and protocol for a multicentre randomized controlled trial.

AIM: Low anterior resection syndrome (LARS) refers to a constellation of bowel symptoms that affect the majority of patients following restorative proctectomy. LARS is associated with poorer quality of life (QoL), and can lead to distress, anxiety and isolation. Peer support could be an important resource for people living with LARS, helping them normalize and validate their experience. The aim of this work is to describe the development of an interactive online informational and peer support app for LARS and the protocol for a randomized controlled trial. METHOD: A multicentre, randomized, assessor-blind, parallel-groups pragmatic trial will involve patients from five large colorectal surgery practices across Canada. The trial will evaluate the impact of an interactive online informational and peer support app for LARS, consisting of LARS informational modules and a closed forum for peers and trained peer support mentors, on patient-reported outcomes of people living with LARS. The primary outcome will be global QoL at 6 months following app exposure. The treatment effect on global QoL will be modelled using generalized estimating equations. Secondary outcomes will include patient activation and bowel function as measured by LARS scores. RESULTS: In order to better understand patients' interest and preferences for an online peer support intervention for LARS, we conducted a single institution cross-sectional survey study of rectal cancer survivors. In total, 35/69 (51%) participants reported interest in online peer support for LARS. Age <65 years (OR 9.1; 95% CI 2.3-50) and minor/major LARS (OR 20; 95% CI 4.2-100) were significant predictors of interest in LARS online peer support. CONCLUSION: There is significant interest in the use of online peer support for LARS among younger patients and those with significant bowel dysfunction. Based on results of the needs assessment study, the app content and features were modified reflect patients' needs and preferences. We are now in an optimal position to rigorously test the potential effects of this initiative on patient-centered outcomes using a randomized controlled trial.

Increasing access to psychosocial oncology services means becoming more person-centered and situation-responsive.

Current approaches in cancer supportive care call for enhanced patient access, personalized care, and higher service quality and performance. Person-centered care (PCC) is respectful and responsive to individuals' needs, preferences, and context. PCC is likely to enhance access to relevant resources and services as the cancer experience and trajectory unfold. However, significant gaps still exist in accessing supportive modalities across the cancer trajectory. Too often, affected individuals must contend with institution-centric rather than personalized modalities, practices, and schedules. In this commentary, we review the evidence on the distinct needs and preferences of individuals affected by cancer and highlight key factors significantly associated with patient experiences and satisfaction. Recommendations are made to enhance access, relevance, and a fuller integration of cancer service delivery. Last, we discuss how implementing these recommendations aligns with potentially more cost-effective psychosocial oncology support while directly addressing access to timely psychosocial care.

Avoir sa santé en main : le sentiment d'habilitation tel que perçu par les jeunes adultes souffrant d'un cancer avancé.

CONTEXTE: Le sentiment d'habilitation sur sa santé (health related empowerment) est un concept fondamental des soins centrés sur la personne. Toutefois, on en sait peu sur la manière dont ce concept s'articule chez les jeunes adultes ayant un diagnostic de cancer avancé. OBJECTIF: Explorer le sentiment d'habilitation à la lumière des expériences de soins de santé vécues par les jeunes adultes en phase de cancer avancé. CADRE ET PARTICIPANTS: Douze jeunes adultes (âgés de 21 à 39 ans) ont été recrutés dans un grand centre de cancérologie de Montréal, au Québec. MÉTHODOLOGIE: Des entretiens en profondeur durant entre 36 et 90 minutes ont été menés individuellement, enregistrés et retranscrits mot pour mot, puis analysés par thèmes. RÉSULTATS: Tout au long de l'expérience du cancer, les participants ont témoigné du désir soutenu de participer activement à leur traitement et à leurs soins. Quatre thèmes sont ressortis des données décrivant les processus d'attente, de prise en charge de la maladie, de mise en action et de recadrage. Sous-jacents à ces thèmes se trouvent les notions de conscience du corps, les obstacles à surmonter pour obtenir des soins, l'optimisation de la santé et la réflexion sur l'héritage qu'on laisse derrière soi. CONCLUSIONS: De façon générale, les participants voulaient demeurer en contrôle de la situation malgré les multiples difficultés inhérentes à un cancer de stade avancé. Si elles sont corroborées par d'autres recherches, ces conclusions pourraient orienter les approches de soins en oncologie afin qu'elles soient véritablement adaptées aux besoins des jeunes adultes.

Taking control over our health: Empowerment as perceived by young adults living with advanced cancer.

BACKGROUND: Health-related empowerment is a key concept in person-centred care. However, little is known of its core elements in young adults diagnosed with advanced cancer. OBJECTIVE: To explore empowerment in the context of young adults' healthcare experiences who are now in advanced stages of cancer. SETTING & PARTICIPANTS: Twelve young adults (aged 21 to 39 years) were recruited from a large cancer centre in Montreal, Quebec. METHODS: In-depth interviews lasting between 36 and 90 minutes were conducted individually, audio-recorded, transcribed verbatim, and analyzed using thematic analysis. RESULTS: Throughout the cancer trajectory, participants reported a sustained desire to be actively involved in their treatment and care. Four themes emerged from the data representing processes of waiting, managing, acting, and revisiting. Subsumed under these were notions of body ownership, facing obstacles to care, optimizing health, and (re)considering their legacy. CONCLUSIONS: Overall, participants wanted to remain in control of their situation despite the multiple challenges related to advanced cancer. If corroborated further, these findings should inform supportive cancer care approaches that are truly tailored to the needs of young adults.

L'infirmière pivot associée à une expérience de soins oncologiques positive et à une satisfaction accrue des patients.

CONTEXTE ET OBJECTIFS: Un nombre croissant de résultats probants indique que l'infirmière pivot en oncologie (IPO) joue un rôle de premier plan dans l'optimisation des processus et des résultats de soins. Il faudra toutefois mener des études d'envergure pour comparer les perceptions de l'expérience de soins liés au cancer des patients traités par des infirmières pivots et de ceux qui n'ont pas bénéficié de ce type de suivi. MÉTHODOLOGIE: Des participants (N = 2 858) traités au cours des six derniers mois dans un centre de traitement du cancer situé à Montréal, au Québec, et affilié à une université ont répondu au sondage sur la satisfaction des patients en traitement anticancéreux ambulatoire, c'est-à-dire le Ambulatory Oncology Patient Satisfaction Survey (AOPSS). RÉSULTATS: L'expérience des soins oncologiques était significativement plus positives et la satisfaction plus élevée dans le groupe suivi par une infirmière pivot (n = 2 003) pour les six domaines de soins (différences moyennes de 3,32 à 8,95) et les quatre fonctions infirmières (différences moyennes de 5,64 à 10,39), comparativement au groupe sans IPO (n = 855). DISCUSSION: L'infirmière pivot joue un rôle important dans l'amélioration de l'expérience de soins et la satisfaction des patients. Les recherches futures devront explorer les potentielles relations de cause à effet entre les infirmières pivots, les processus de soins et les résultats des patients.

The nurse pivot-navigator associated with more positive cancer care experiences and higher patient satisfaction.

BACKGROUND AND OBJECTIVES: Growing evidence indicates that the nurse navigator-pivot (NN), is key to optimizing care processes and outcomes. However, large scale studies are needed to examine how patients exposed to NNs (as opposed to non-NN) differentially perceived their cancer care experiences. METHOD: Participants (N = 2,858) treated for cancer in the last six months at university-affiliated cancer centres in Montréal, Québec, completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS). RESULTS: Cancer care experiences and satisfaction were significantly higher in the NN group (n = 2,003) for all six care domains (Ds from 3.32 to 8.95) and all four nursing functions (Ds from 5.64 to 10.39) when compared to the non-NN group (n = 855). DISCUSSION: The NN role is significantly related to enhanced cancer care experiences and higher patient satisfaction. Future research should explore potential causal effects between NNs and care processes, as well as patient outcomes.

Toward the development of a comprehensive cancer experience measurement framework.

A diagnosis of cancer and its treatment often have a profound impact on an individual's health-related quality of life-affecting physical, psychological, social, occupational, and financial domains. Person-centered care (PCC)-defined as a respectful, responsive, and tailored approach that meets patients' needs, values, and preferences-is becoming an integral part of comprehensive cancer care. The implementation of PCC into clinical practice provides benefits such as improvement in the quality of patient care, enhanced health-related outcomes, and significantly higher satisfaction with care. However, to guide and document more precisely the effects of PCC, various authors have argued that a more comprehensive measurement framework is needed. The primary goal of this paper is to present such an evolving framework based on extant evidence and developed in the context of a series of expert stakeholder meetings spearheaded by the Canadian Partnership Against Cancer (CPAC) that began in 2012. Developed collaboratively, the Cancer Experience Measurement Framework goes beyond existing patient experience frameworks by focusing on four key elements and related measures: the patient perspective, the family perspective, the combined patient-family perspective, and interactions with the healthcare system. In light of current healthcare trends promoting cancer self-management, patients as partners, and patient and family engagement in care, it is imperative that we conduct ongoing assessments using shared and psychometrically sound measures to ensure sound comparisons across settings, as well as better cancer-related processes and outcomes for indivduals affected by cancer.

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

PURPOSE: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. METHODS: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. RESULTS: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. CONCLUSION: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

A fertility needs assessment survey of male cancer patients.

OBJECTIVE: To describe fertility-related informational needs and practices, and to examine if demographic characteristics are related to these needs and practices. METHODS: A needs assessment survey was conducted at three Canadian cancer centres. RESULTS: 192 male cancer patients (Mage = 33.6) completed the survey. Most patients (70%) recalled having had a discussion with a health care provider regarding their fertility and 44% banked their sperm. Patients reported not getting all the information that they wanted, eg, the risk that a future child may have the same type of cancer (78%), and what was covered by insurance plans (71%). Barriers to sperm preservation were urgency to begin cancer treatment (49%), not planning to have a child in the future (47%) and worries that cancer could be passed on to future children (38%). Participants' age and being the parent of a child were significantly associated with having had a discussion about fertility. Participants' age, province, being the parent of a child and the desire for future children were significantly associated with fertility preservation. CONCLUSIONS: Discussions with health care providers were more frequent, and fertility preservation rates were higher than in past studies, but still not all patients' questions were answered. Misconceptions about passing on cancer to one's child, and that sperm preservation will delay treatment, should be dispelled. Health care providers can ask patients if they have any desire to have children in the future as a way to initiate a discussion of fertility preservation. Key information gaps and psychosocial resource needs are suggested to fully meet male cancer patients' fertility-related concerns.

Adaptation of Coping Together - a self-directed coping skills intervention for patients and caregivers in an outpatient hematopoietic stem cell transplantation setting: a study protocol.

BACKGROUND: Despite numerous reports of significant distress and burden for hematopoietic stem cell transplantation (HSCT) patients and caregivers (CGs), HSCT-specific coping interventions remain rare. The few in use lack specificity and are often not easily accessible or cost-effective. Whereas the development of new interventions is resource-intensive, theory-informed adaptation of existing evidence-based interventions is promising. To date, no HSCT-specific intervention has relied on a formal adaptation approach. METHODS: Using the Center for Disease Control and Prevention's Map of Adaptation, this two-phase qualitative descriptive study seeks to understand the perceptions of HSCT patients, CGs, individually, and in dyads, and clinicians about Coping Together (CT) for the preliminary adaptation (Phase 1), and then explores perceptions of the modified intervention in additional mixed sample (Phase 2). Six to ten participants including outpatients, CGs and dyads and five to seven HSCT clinician participants will be recruited for Phase 1. For Phase 2, 14 to 16 participants including outpatients, CGs and dyads will be recruited. Individual and dyadic semi-structured interviews will take place between 100 and 130 days post-HSCT. Verbatim transcripts will be analyzed using content analysis. DISCUSSION: It is paramount to have HSCT-specific supportive interventions that address patients' and CGs' multidimensional and complex needs. The timely involvement of key stakeholders throughout the adaptation process is likely to optimize the relevance and uptake of such tailored intervention. TRIAL REGISTRATION: This study is registered on October 6, 2016 in ClinicalTrials.gov at (identifier number NCT02928185 ).

E-health tools in oncology nursing: Perceptions of nurses and contributions to patient care and advanced practice.

As oncology nurses confront a rapidly evolving field with increased workplace pressure, the integration of evidence-based connected health platforms within practice presents promise. This study explores nurses' perceptions regarding the utility of e-health tools, with a focus on the Oncology Interactive Navigator (OINTM), as a potential contributor to their practice and interactions with patients. Focus groups with oncology nurses were conducted at two time points: prior to exposure to the OINTM (T1, n=8) and four weeks post unrestricted tool access (T2, n=7). Using qualitative constant comparison analysis, three themes emerged: (1) Key factors driving e-health use are multidimensional and evolving; (2) Dual role of e-health in meeting patient needs and supporting practice; (3) E-health as a catalyst for professional development and networking. E-health is appealing to oncology nurses, as it serves to advance practice and support patient care. Future research should explore best practices for optimal clinical implementation among all stakeholders involved.