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"Fox, Colleen"
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How Cancer Online Support Groups Work, for Whom, and in What Circumstances: Realist Review
by
Scruton, Sarah
,
Babinski, Stephanie
,
Potts, Henry
in
Analysis
,
Cancer
,
Cancer Survivors - psychology
2026
Online support groups (OSGs) offer a convenient way for patients with cancer and survivors of cancer to obtain information and support. However, not all OSGs are helpful, and in some cases, they may increase distress. Overall, there is a lack of clear evidence on the effects of OSGs, along with how and why they work.
This study examined how, for whom, and in what contexts OSGs work for patients with cancer and survivors of cancer.
A realist review of the evidence on cancer OSGs was conducted (12 databases, inception to February 15, 2025). We followed Pawson's steps and the RAMESES (Realist and Meta-Narrative Evidence Syntheses: Evolving Standards) quality standards for realist reviews. The Mixed-Methods Appraisal Tool was used to assess the quality of the evidence. Using a realist logic of analysis, we generated a narrative summary of the findings, context-mechanism-outcome configurations, and a program theory (eg, conceptual framework) to explain how cancer OSGs work. Additionally, we developed evidence-based recommendations for optimizing the effectiveness of OSGs.
Of 16,659 papers identified, 168 were included. The evidence was organized into 3 categories, 10 concepts, and 57 context-mechanism-outcome configurations. Cancer OSGs can support patients by providing informational, emotional, appraisal, and altruistic support. This can lead to changes in distress, isolation, empowerment, and self-esteem, through negative and positive appraisals as well as coping efforts. These outcomes, however, depend on user attitudes about OSGs (ie, trustworthy, useful, culturally safe, and easy-to-use), how well the OSG fits their needs (ie, health need, sociodemographic or clinical characteristics, and coping style), and perceptions of control (ie, availability, anonymity, privacy, and autonomy). If an OSG was a good fit for a user's needs, whether they experienced positive outcomes depended on features of the communication technology (ie, modality, response time, and visual social cues), group composition and dynamics (ie, norms, moderation, safety, cohesion, and belonging), and the nature and content of interactions (ie, emotional expression, cognitive processing, and empathetic responses). These factors trigger underlying mechanisms such as feeling understood, accepted, cared for, valued, reassured, informed, and confident, which result in positive outcomes.
OSGs can address supportive care needs and improve psychosocial well-being for patients with cancer and survivors of cancer. However, outcomes depend on specific contexts and mechanisms that impact how well OSGs meet patients' needs. To optimize effectiveness of OSGs, we recommend (1) helping to assess fit and address specific needs; (2) demonstrating trustworthiness; (3) enhancing anonymity and control, and protecting privacy; (4) enhancing ease-of-use; (5) supporting connection and belonging; (6) encouraging activity; (7) enhancing the nature of content shared to boost therapeutic effects; and (8) monitoring and adjusting design and management strategies.
Journal Article
Establishing best practices in cancer online support groups: protocol for a realist review
by
Babinski, Stephanie
,
Tricco, Andrea C
,
Potts, Henry
in
Breast cancer
,
health informatics
,
health services administration & management
2021
IntroductionConsiderable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their—sometimes contrasting—outcomes.Methods and analysisGuided by an integrated knowledge translation approach and the strategy for patient-oriented research, we will conduct a realist review of cancer online support groups in partnership with stakeholders. We will follow Pawson’s five steps and existing quality standards to develop a program theory that explains how cancer online support groups work, for whom and in what circumstances. The specific research questions will be: what positive and negative outcomes have been reported on cancer online support groups? What are the mechanisms that are associated with these outcomes, in which contexts and for whom? Through a rigorous review of relevant scientific and grey literature, as well as ongoing dialogue with stakeholders, a program theory will be developed to explain who benefits from cancer online support groups and who does not, what benefits they derive (or do not), and the factors that affect these outcomes.Ethics and disseminationThe use of secondary data for this review precludes the need for ethical approval. Dissemination will be informed by the knowledge-to-action framework and will consist of tailored knowledge products that are conceived of collaboratively with stakeholders. These will include peer-reviewed publications on how cancer online support groups can be optimised and best practice recommendations to maximise the benefits experienced by people with cancer. These traditional scientific outputs, along with their respective evidence summaries, will be amplified through strategic social media events hosted and promoted by knowledge users.PROSPERO registration numberCRD42021250046.
Journal Article
Primary care utilization for patients with newly diagnosed cancer during the COVID-19 pandemic: a population-based study
by
Cheung, Matthew C.
,
Liu, Ning
,
Chan, Kelvin K.W.
in
Biomedical and Life Sciences
,
Biomedicine
,
Cancer
2022
Background
The COVID-19 pandemic greatly impacted primary care and cancer care. We studied how primary care utilization in Ontario, Canada changed for patients who were newly diagnosed with cancer just prior to the COVID-19 pandemic compared to those diagnosed in non-pandemic years.
Methods
This population-based, retrospective cohort study used linked healthcare databases to compare outcomes for patients with a new malignancy diagnosed within the year prior to the COVID-19 pandemic, between July 1 and September 30, 2019 (COVID-19 cohort) to those diagnosed in the same months in 2018 and 2017 (pre-pandemic cohort). We used Poisson regression models to compare rates of in-person and virtual visits to patients’ usual primary care physician (PCP), emergency department (ED) visits, and hospitalizations, all reported per person-year of follow-up.
Results
In-person visits to usual PCPs decreased from 4.07/person-year in the pre-pandemic cohort to 2.58 in the COVID-19 cohort (
p
< 0.0001). Virtual visits to usual PCPs increased from 0.00 to 1.53 (
p
< 0.0001). Combined in-person and virtual visits to patients’ usual PCPs was unchanged from 4.07 to 4.12 (
p
= 0.89). The rate of ED visits decreased from 0.99/person-year to 0.88 (
p
< 0.0001). Non-elective hospitalizations remained unchanged, from 0.49/person-year to 0.47 (
p
= 0.1675).
Conclusion
There was a sizeable shift in primary care visits for cancer patients from in-person to virtual during the pandemic, although there was no resultant increase in hospitalizations. This suggests that early in the pandemic, virtual care allowed for continuity in utilization of primary care, though further studies are required to confirm this persisted later in the pandemic.
Journal Article
Anxiety and depression in patients with intracranial meningioma: a mixed methods analysis
by
Das, Sunit
,
Samuel, Nardin
,
Hart, Shannon
in
Anxiety
,
Behavioral Science and Psychology
,
Brain cancer
2022
Background
While diagnosis with a high-grade intracranial tumor is known to be associated with increased psychosocial burden, the burdens associated with meningioma are less well described. This study aimed to investigate the mental health burden in patients with meningiomas who have undergone surgical resection or serial observation, so as to identify and enhance awareness of gaps in care.
Methods
The Hospital Anxiety and Depression Scale (HADS) was administered to participants. Fisher’s Exact tests were performed to evaluate frequency distributions and t-tests were applied to compare postoperative and non-surgical patients’ HADS scores. Semi-structured interviews were completed on a subset of participants. Thematic analysis of interviews identified emerging themes.
Results
Thirty patients with intracranial meningiomas met inclusion criteria. The cohort’s mean age was 56.01 years and 66.67% were women (n = 20). Fourteen underwent surgery; sixteen were treated conservatively with observation. The average time since diagnosis of the sample was 37.6 months. Prevalence of mild to severe symptoms of anxiety was 28.6% amongst surgical management patients and 50% for active surveillance patients (
p
= 0.325). The prevalence of mild to severe symptoms of depression was 7.14% amongst surgical management patients and 6.25% for active surveillance patients (
p
= 0.533). Emerging themes from eight interviews reveal the influence of resilience, uncertainty and time, social support, interactions with medical experts, and difficulties during recovery on mental health.
Conclusion
The findings from the present study reveal that patients with meningiomas experience a significant mental health burden, illustrating the need for enhanced patient-centred care focusing on mental health.
Journal Article
Prevalence, severity, and predictors of symptom burden among adolescents and young adults with cancer
2023
Background Symptom burden in adolescents and young adults (AYA) with cancer is poorly characterized but impacts quality of life. Methods All Ontario, Canada AYA aged 15–29 years at diagnosis between 2010 and 2018 were linked to population‐based healthcare databases, including to Edmonton Symptom Assessment System‐revised (ESAS) scores, an 11‐point scale routinely obtained at the time of cancer‐related outpatient visits and collected provincially. Multistate models estimated mean duration of symptom severity states [none (0) vs. mild (1 vs. 2 vs. 3) vs. moderate (4–6) vs. severe (7–10)], trajectories, and subsequent mortality risk. Variables associated with severe symptoms were also determined. Results In total, 4296 AYA with ≥1 ESAS score within a year of diagnosis were included (median age 25 years). Prevalent moderate/severe symptoms included fatigue (59% of AYA) and anxiety (44%). Across symptom type, AYA reporting moderate symptoms were likelier to subsequently experience improvement versus worsening. Risk of death within 6 months increased with increasing symptom burden and was highest in AYA with severe dyspnea (9.0%), pain (8.0%), or drowsiness (7.5%). AYA in the poorest urban neighborhoods were more likely to experience severe symptoms than in the wealthiest areas, with twice the odds of reporting severe depression [adjusted odds ratio (OR) 1.95, 95th confidence interval (95% CI) 1.37–2.78], pain (OR: 1.94, 95% CI: 1.39–2.70), and dyspnea (OR: 1.96, 95% CI: 1.27–3.02). Conclusions AYA with cancer experience substantial symptom burden. Risk of death increased with symptom severity. Interventions targeting cancer fatigue and anxiety, and targeting AYA in lower‐income neighborhoods, are likely to improve quality of life in this population. Proportion of ESAS ≥7 at each biweekly interval.
Journal Article
Dosimetric review of cardiac implantable electronic device patients receiving radiotherapy
by
Pelosi, Frank
,
Fox, Colleen J.
,
Hayman, James A.
in
Accuracy
,
Algorithms
,
cardiac implantable electronic device
2015
A formal communication process was established and evaluated for the management of patients with cardiac implantable electronic devices (CIEDs) receiving radiation therapy (RT). Methods to estimate dose to the CIED were evaluated for their appropriateness in the management of these patients. A retrospective, institutional review board (IRB) approved study of 69 patients with CIEDs treated with RT between 2005 and 2011 was performed. The treatment sites, techniques, and the estimated doses to the CIEDs were analyzed and compared to estimates from published peripheral dose (PD) data and three treatment planning systems (TPSs) — UMPlan, Eclipse's AAA and Acuros algorithms. When measurements were indicated, radiation doses to the CIEDs ranged from 0.01–5.06 Gy. Total peripheral dose estimates based on publications differed from TLD measurements by an average of 0.94 Gy (0.05–4.49 Gy) and 0.51 Gy (0–2.74 Gy) for CIEDs within 2.5 cm and between 2.5 and 10 cm of the treatment field edge, respectively. Total peripheral dose estimates based on three TPSs differed from measurements by an average of 0.69 Gy (0.02–3.72 Gy) for CIEDs within 2.5 cm of the field edge. Of the 69 patients evaluated in this study, only two with defibrillators experienced a partial reset of their device during treatment. Based on this study, few CIED‐related events were observed during RT. The only noted correlation with treatment parameters for these two events was beam energy, as both patients were treated with high‐energy photon beams (16 MV). Differences in estimated and measured CIED doses were observed when using published PD data and TPS calculations. As such, we continue to follow conservative guidelines and measure CIED doses when the device is within 10 cm of the field or the estimated dose is greater than 2 Gy for pacemakers or 1 Gy for defibrillators. PACS number: 87.55.N‐
Journal Article
Health Literacy and Radiation Therapy: a Current State Assessment of Patient Education Materials
2023
In order to mitigate low levels of health literacy among patients, there is need to evaluate patient education (PE) materials and to ensure that the information is readily accessible to patients. The quality and comprehensiveness of radiation therapy materials were evaluated at fourteen cancer centres. To assess quality, PE leaders independently conducted readability, actionability and understandability assessments of materials. To evaluate comprehensiveness, an assessment was conducted of the scope of symptoms covered in extant materials, and the modality they were produced in (e.g. pamphlet, video). A total of 555 PE materials were reviewed for comprehensiveness and modality and seventy underwent evaluation against health literacy best practice standards. Most materials (n = 64, 91%) had a reading grade level above the recommended grade 6 (x¯ = 9, range = 4–12). Under half (n = 34, 49%) scored at or above the 80% threshold for understandability (x¯ = 74%, 33–100%) and just over half (n = 36, 51%) scored at or above the 80% target for actionability (x¯ = 71%, 33–100%). Only two cancer centres (n = 2/14, 14%) had PE materials covering the breadth of symptoms related to radiation therapy and the vast majority of materials were pamphlets (89%). Findings indicate that most radiation therapy PE materials used in cancer centres do not meet health literacy best practices, and there is a disparity between cancer centres in the topics that are available to patients and family. This evaluation highlights the need to better incorporate health literacy best practices into the development of radiation therapy PE materials and strategies to improve accessibility of such health information.
Journal Article
Provincial oncology nursing telepractice standards development and evaluation during the pandemic response
2023
The role of oncology ambulatory care nurses has continuously evolved and better meets the needs of patients and families. As a consequence, nursing telepractice has expanded to become an essential component of comprehensive ambulatory oncology care. With increased complexity of telepractice care, it is crucial to apply effective verbal communication, develop therapeutic relationships, adopt a systematic approach to assessment, apply critical thinking and decision-making skills, and complete thorough documentation of telepractice encounters. In 2017, a current state assessment of Ontario's regional cancer centres revealed that telephone management made up a large component of the oncology nurse's role, but varied greatly in how it was prioritized, supported and delivered. In response, Ontario Health (Cancer Care Ontario) convened a multi-stakeholder Oncology Nursing Telepractice Working Group and completed a jurisdictional and evidentiary scan to develop the Oncology Nursing Telepractice Standards. A framework for quality oncology nursing telepractice was developed and the recommendations were aligned to the components of oncology nursing expertise, evidence-informed guidance, documentation, call time points, organizational leadership, and monitoring quality. The standards aim to provide guidance to oncology nurses and administrators to achieve safe, high-quality oncology nursing telepractice. This presentation will present the standards and the results of a provincial survey assessing the applicability and usefulness of the Oncology Nursing Telepractice Standards to guide the rapid increased uptake of telepractice services during the COVID-19 pandemic.
Conference Proceeding
The Cost of Patient Education Materials Development: Opportunities to Identify Value and Priorities
2022
The study aim was to evaluate the costs associated with developing and reviewing patient education materials (pamphlets) across Ontario cancer centers. While patient education often produces a positive return on investment, limited efforts have been dedicated to optimizing the personnel, time, and capital dedicated to this feat across healthcare systems. Patient education leaders at 14 cancer centers completed a survey measure, estimating the number of hours spent developing and reviewing pamphlets and identifying the personnel involved in each procedural step. The time expended per center in each step was then combined with average salary data for the identified personnel to derive total cost estimates. Cancer centers spend on average$5672 (SD = $ 3180) developing (M = $4560, SD = $ 2620) and reviewing (M = $1112, SD = $ 654) one pamphlet. This cumulates to an average per annum spending of$65,401 (SD = $ 75,494) for pamphlet development and$19,819 (SD = $ 28,524) for annual pamphlet review at each cancer center. The cost and number of hours spent developing and reviewing pamphlets varied substantially between cancer centers. While the security of budgets for patient education varies across cancer centers, opportunities to optimize human capital and monetary resources should be considered. Results of the study can be used to advocate for sustainable investment into cancer education programs, improve the coordination of educational materials production and review, and ensure that resource quality and access are consistent across the province.
Journal Article
Delivery of Cancer Care in Ontario, Canada, During the First Year of the COVID-19 Pandemic
2022
The COVID-19 pandemic has impacted cancer systems worldwide. Quantifying the changes is critical to informing the delivery of care while the pandemic continues, as well as for system recovery and future pandemic planning.
To quantify change in the delivery of cancer services across the continuum of care during the COVID-19 pandemic.
This population-based cohort study assessed cancer screening, imaging, diagnostic, treatment, and psychosocial oncological care services delivered in pediatric and adult populations in Ontario, Canada (population 14.7 million), from April 1, 2019, to March 1, 2021. Data were analyzed from May 1 to July 31, 2021.
COVID-19 pandemic.
Cancer service volumes from the first year of the COVID-19 pandemic, defined as April 1, 2020, to March 31, 2021, were compared with volumes during a prepandemic period of April 1, 2019, to March 31, 2020.
During the first year of the pandemic, there were a total of 4 476 693 cancer care services, compared with 5 644 105 services in the year prior, a difference of 20.7% fewer services of cancer care, representing a potential backlog of 1 167 412 cancer services. While there were less pronounced changes in systemic treatments, emergency and urgent imaging examinations (eg, 1.9% more parenteral systemic treatments) and surgical procedures (eg, 65% more urgent surgical procedures), major reductions were observed for most services beginning in March 2020. Compared with the year prior, during the first pandemic year, cancer screenings were reduced by 42.4% (-1 016 181 screening tests), cancer treatment surgical procedures by 14.1% (-8020 procedures), and radiation treatment visits by 21.0% (-141 629 visits). Biopsies to confirm cancer decreased by up to 41.2% and surgical cancer resections by up to 27.8% during the first pandemic wave. New consultation volumes also decreased, such as for systemic treatment (-8.2%) and radiation treatment (-9.3%). The use of virtual cancer care increased for systemic treatment and radiation treatment and psychosocial oncological care visits, increasing from 0% to 20% of total new or follow-up visits prior to the pandemic up to 78% of total visits in the first pandemic year.
In this population-based cohort study in Ontario, Canada, large reductions in cancer service volumes were observed. While most services recovered to prepandemic levels at the end of the first pandemic year, a substantial care deficit likely accrued. The anticipated downstream morbidity and mortality associated with this deficit underscore the urgent need to address the backlog and recover cancer care and warrant further study.
Journal Article