Examining the development of information needs assessment tools for use in the cancer context: A scoping and critical review.

BACKGROUND: Information needs are one of the most common unmet supportive care needs of those living with cancer. Little is known about how existing tools for assessing information needs in the cancer context have been created or the role those with lived cancer experience played in their development. OBJECTIVES: This review aimed to characterize the development and intended use of existing cancer specific information needs assessment tools. METHODS: A systematic scoping review was conducted using a peer-reviewed protocol informed by recommendations from the Joanna Briggs Institute and the Prefered Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. RESULTS: Twenty-one information needs assessment tools were included. Most tools were either breast cancer (n = 8) or primary tumor nonspecific (n = 8). Patients and informal carers participated in initial identification of questionnaire items in the minority of cases (n = 6) and were more commonly involved in reviewing the final questionnaire before use or formal psychometric testing (n = 9). Most questionnaires were not assessed for validity or reliability using rigorous quantitative psychometric testing. SIGNIFICANCE OF RESULTS: Existing tools are generally not designed to provide a rigorous assessment of informational needs related to a specific cancer challenge and are limited in how they have been informed by those with lived cancer experience. Tools are needed that both rigirously address information needs for specific cancer challenges and that have been developed in partnership with those who have experienced cancer. Future directions should include understanding barriers and facilitators to developing such tools.

Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory.

BACKGROUND: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors. OBJECTIVE: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs. METHODS: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information. RESULTS: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory. CONCLUSIONS: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice.

A model of identity grounded in the acute season of survivorship.

OBJECTIVE: Survivorship literature generally focuses on the cancer experience after diagnosis and treatment. However, acute survivorship, beginning with diagnosis and ending at the completion of treatment, has a lasting impact on the well-being of patients. The purpose of this study was to generate a theoretical understanding of how identity is affected during acute survivorship. METHODS: Using grounded theory and interviews with patients, their families, and their friends, the impact of the acute survivorship phase on the identity of patients was explored in Manitoba, Canada. Forty-two interviews were carried out, involving 18 patients with early malignancies and 15 friends and family members. RESULTS: The theory which evolved suggests that identity can be viewed as a construct of 3 concepts: values, social domains, and routine. Following diagnosis identity is disrupted as patients face challenges integrating the health care recipient social domain into their established routine. Patients indicated that the impact of the cancer diagnosis on their identities could have been minimized through earlier provision of the necessary information to re-establish routine. CONCLUSIONS: The theory that emerged from this study articulates the impact of the early cancer experience on the identity of patients. It also provides a framework for predicting which interventions may improve the cancer experience. Exploring how to best provide information that helps patients re-establish and maintain their routines after diagnosis is an important future direction.

Measuring the impact of COVID-19 on cancer survival using an interrupted time series analysis.

BACKGROUND: Few studies have investigated the impact of the COVID-19 pandemic on cancer survival. Those studies that have included pandemic vs prepandemic comparisons can mask differences during different periods of the pandemic such as COVID-19 waves. The objective of this study was to investigate the impact of the COVID-19 pandemic on cancer survival using an interrupted time series analysis and to identify time points during the pandemic when observed survival deviated from expected survival. METHODS: A retrospective population-based cohort study that included individuals diagnosed with cancer between January 2015 and September 2021 from Manitoba, Canada, was performed. Interrupted time series analyses with Royston-Parmar models as well as Kaplan-Meier survival estimates and delta restricted mean survival times at 1 year were used to compare survival rates for those diagnosed before and after the pandemic. Analyses were performed for 11 cancer types. RESULTS: Survival at 1 year for most cancer types was not statistically different during the pandemic compared with prepandemic except for individuals aged 50-74 years who were diagnosed with lung cancer from April to June 2021 (delta restricted mean survival times = -31.6 days, 95% confidence interval [CI] = -58.3 to -7.2 days). CONCLUSIONS: With the exception of individuals diagnosed with lung cancer, the COVID-19 pandemic did not impact overall 1-year survival in Manitoba. Additional research is needed to examine the impact of the pandemic on long-term cancer survival.

Impact of Cancer-Related Virtual Visits on Travel Distance, Travel Time, and Carbon Dioxide (CO2) Emissions during the COVID-19 Pandemic in Manitoba, Canada.

CancerCare Manitoba (CCMB) introduced virtual visits at the beginning of the COVID-19 pandemic to replace many in-person visits. This study examines the impact of virtual visits for cancer care on travel distance, travel time, and carbon dioxide (CO2) emissions. We included all visits to CCMB for invasive and in situ cancers from 1 April 2020 to 31 December 2022. Data were extracted from CCMB's electronic health record. The percentage of visits done virtually by month was reported by age, gender, cancer diagnosis, and regional health authority of residence. Postal codes for patients' residences and clinic locations were converted into latitude and longitude values. Travel distance, travel time, and CO2 emissions associated with travel were estimated. The percentage of virtual visits was highest during the months when COVID-19 restrictions were present in Manitoba and represent more than 50% of such monthly visits. Virtual visits increased with age, were highest among men with urogenital cancer, and were lowest among northern Manitoba residents. The median travel time per visit ranged from 30 min in Winnipeg to 15 h in the Northern Region. The estimated travel distance saved varied from 420,000 to 750,000 km per month. Estimated travel time saved varied from 5500 to 9600 h per month. Estimated CO2 emissions prevented varied from 87 to 155 metric tons per month. Virtual care is an important tool for better supporting those living with cancer by substantially decreasing travel distance and time. Virtual care also contributes to reducing greenhouse gas emissions.

Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design.

BACKGROUND: The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development. OBJECTIVE: The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design. METHODS: Adults (≥18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures. RESULTS: A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19% each). In total, 67% (14/21) of patients, 29% (6/21) of informal caregivers, and 5% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google). CONCLUSIONS: Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research.

New Cancer Diagnoses Before and During the COVID-19 Pandemic.

Importance: Disruptions to health care during the COVID-19 pandemic may have led to missed cancer diagnoses. It is critical to evaluate the association between the COVID-19 pandemic and cancer incidence to address public and patient anxiety, inform recovery efforts, and identify strategies to reduce the system's vulnerability to future disruptions. Objective: To examine the association between the COVID-19 pandemic and cancer incidence in Manitoba, Canada. Design, Setting, and Participants: A population-based cross-sectional study design was conducted using data from the Manitoba Cancer Registry and an interrupted time-series analysis. All individuals diagnosed with cancer in Manitoba, Canada, from January 1, 2015, until December 31, 2021, were included. Individuals diagnosed with breast, colon, rectal, or lung cancer were grouped by age as follows: younger than 50 years, 50 to 74 years, and 75 years and older. Exposures: COVID-19 pandemic. Main Outcomes and Measures: Age-standardized cancer incidence rates and the estimated cumulative difference between the number of cases in the absence of COVID-19 and observed (fitted) number of cancer cases. Results: A total of 48 378 individuals were included. The median (IQR) age at diagnosis was 68 (59-77) years and 23 972 participants (49.6%) were female. In April 2020, there was a 23% decrease in overall cancer incidence. Cancer incidence decreased by 46% for breast, 35% for colon, 47% for rectal, 50% for head and neck, 65% for melanoma, and 33% for endocrine cancer diagnoses and increased by 12% for hematological cancer diagnoses and 8% for diagnoses of cancers with an unknown primary site. Lung cancer incidence remained stable until December 2020 when it decreased by 11%. Brain and central nervous system and urinary cancer diagnoses decreased consistently over time from April 2020 to December 2021 by 26% and 12%, respectively. No association was observed with gynecologic (1% increase), other digestive (1% decrease), or pancreatic (7% increase) cancer incidence. As of December 2021, Manitoba had an estimated deficit of 692 (5.3%) cancers. The largest estimated deficits were for breast (273 cases, 14.1% deficit), colon (133 cases, 12.2% deficit), and lung cancers (132 cases, 7.6% deficit). Conclusions and Relevance: In this study, the COVID-19 pandemic was associated with an initial decrease in cancer diagnosis incidence followed by a recovery for most cancer sites. However, the cumulative deficit for some cancers with high fatality needs immediate attention.

Cancer incidence during the COVID-19 pandemic by region of residence in Manitoba, Canada: A cancer registry-based interrupted time series study.

INTRODUCTION: Health care in Manitoba, Canada is divided into five regions, each with unique geographies, demographics, health care access, and health status. COVID-19-related restrictions and subsequent responses also differed by region. To understand the impact of the pandemic on cancer incidence in the context of these differences, we examined age-standardized cancer incidence rates by region over time before and after the COVID-19 pandemic. METHODS: We used a population-based quasi-experimental study design, population-based data, and an interrupted time series analysis to examine the rate of new cancer diagnoses before (January 2015 until December 2019) and after the start of COVID-19 and the interventions implemented to mitigate its impact (April 2020 until December 2021) by region. RESULTS: Overall cancer incidence differed by region and remained lower than expected in Winnipeg (4.6% deficit, 447 cases), Prairie Mountain (6.9% deficit, 125 cases), and Southern (13.0% deficit, 238 cases). Southern was the only region that had a significantly higher deficit in cases compared to Manitoba (ratio 0.92, 95% CI 0.86, 0.99). Breast and colorectal cancer incidence decreased at the start of the pandemic in all regions except Northern. Lung cancer incidence decreased in the Interlake-Eastern region and increased in the Northern region. Prostate cancer incidence increased in Interlake-Eastern. CONCLUSIONS: The impact of the COVID-19 pandemic on cancer incidence differed by region. The deficit in the number of cases was largest in the southern region and was highest for breast and prostate cancers. Cancer incidence did not significantly decrease in the most northern, remote region.

Fit theory: A cancer experience grounded theory emerging from semi-structured interviews with cancer patients and informal caregivers in Manitoba Canada during the COVID-19 pandemic.

BACKGROUND: It is not clear how changes to healthcare delivery related to the COVID-19 pandemic, including virtual care and social distancing restrictions, have impacted the experience of living with cancer. This study aimed to discover a theory capable of describing the cancer experience, how the pandemic impacted it, and for guiding predictions about how to improve it. METHODS: Between October 2020 and July 2021 digitally recorded semi-structured one-on-one interviews were conducted virtually with adult cancer patients and informal caregivers in Manitoba, Canada. Transcriptions and field notes from the interviews were analyzed using classic grounded theory. RESULTS: Interviews with 33 patients and 6 informal caregivers were conducted. Fit emerged as the core concept of the theory and describes the relationship between the healthcare system and the unique combination of characteristics each patient has. Good fit results in a positive experience and poor fit in a negative experience. Virtual care improves fit in clinical situations where non-verbal communication and physical examination are not important. Support from informal caregivers improves fit. Social distancing restrictions reduce the ability of informal caregivers to provide support. CONCLUSIONS: The impact of fit on the cancer experience suggests that care delivery should be tailored to both the individual needs of the patient and the intention of the clinical interaction. Developing evidence-based strategies to inform the integration of virtual care into oncology practice, with aim of promoting good fit between patients and healthcare services, is an important future direction.

Examining the Development of Information Needs Assessment Questionnaires in Oncology: Protocol for a Scoping Review.

BACKGROUND: Information needs are one of the most prevalent unmet supportive care needs of those living with cancer, including patients and their informal caregivers. Understanding how existing questionnaires for evaluating information needs have been developed is important for guiding appropriate use and informing future research. A literature review examining how information needs assessment questionnaires for use in the cancer context have been developed, with a specific focus on how questionnaire items have been identified, does not exist. OBJECTIVE: This scoping review will examine how questionnaires for assessing the information needs of those living with cancer have been developed with special focus on how patients, informal caregivers, and health care professionals have been involved in the selection and identification of questionnaire items. METHODS: This review will include published studies describing the development and validation of information needs assessment questionnaires for use in the oncology context. MEDLINE (Ovid), Embase (Ovid), CINAHL, Scopus, Web of Science, the Cochrane Database of Systematic Reviews, and PsycInfo will be searched. Articles published at any point up to the date of the search will be eligible for inclusion. One person will screen titles and abstracts, and 2 people will screen and extract data from full-text articles. RESULTS: Results are expected to be available in early 2023. Summary tables and a narrative summary will be used to describe results. CONCLUSIONS: This scoping review will assist in identifying appropriate information needs assessment tools to incorporate into clinical and research contexts in oncology. It will also identify if additional information needs assessment tools are needed. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/35639.

Real-World Outcomes of Oxaliplatin-Based Chemotherapy on R0 Resected Colonic Liver Metastasis.

INTRODUCTION: In resected colonic liver metastasis (CLM), randomized studies of oxaliplatin-based chemotherapy have demonstrated improvements in disease-free survival (DFS), but not overall survival (OS). Additionally, oxaliplatin regimens have not been compared to non-oxaliplatin chemotherapy. Despite limited evidence, perioperative chemotherapy is often used in the management of CLM. The primary aim of this study was to assess the impact of oxaliplatin chemotherapy regimens on OS in patients who have undergone resection of CLM in a real-world setting. PATIENTS AND METHODS: Patients who underwent resection of CLM in the provinces of Alberta and British Columbia, Canada, were identified from 1996 to 2016. Perioperative (pre- and/or post-) systemic therapy was categorized as oxaliplatin or non-oxaliplatin-based chemotherapy or no chemotherapy. The primary and secondary outcomes were OS and DFS, respectively. RESULTS: We identified 511 patients who underwent R0 resection of CLM. A significant difference in median OS was identified among the oxaliplatin, non-oxaliplatin, and no-chemotherapy groups of 100, 60, and 59 months, respectively (P = .009). In multivariate analysis, patients who received oxaliplatin regimens had a lower risk of death (hazard ratio, 0.68; 95% confidence interval, 0.51-0.92; P = .012), whereas the non-oxaliplatin chemotherapy group did not (hazard ratio, 0.88; 95% confidence interval, 0.65-1.20; P = .422) compared with no chemotherapy. CONCLUSIONS: In this multicenter, retrospective, population-based study, perioperative oxaliplatin-based chemotherapy was associated with improved OS in conjunction with R0 resection of CLM. Further studies should evaluate the optimal duration and sequencing of perioperative chemotherapy in relation to curative-intent surgical resection of CLM.

Evaluating the Impact of the COVID-19 Pandemic on New Cancer Diagnoses and Oncology Care in Manitoba.

Individuals with cancer are vulnerable to infection with SARS-CoV-2, the virus causing COVID-19. Physical distancing, the reallocation of health care resources, and the implementation of procedures to reduce the spread of COVID-19 may also have serious consequences for people with cancer. We evaluated the impact of COVID-19 on new cancer diagnoses and oncology care in Manitoba, Canada using an interrupted time series design and data from the Manitoba Cancer Registry and CancerCare Manitoba's (CCMB) electronic medical record. In April 2020, there was a 23% decrease in new cancer diagnoses, a 21% decrease in pathology reports, and a 43% reduction in surgical resections. There was no difference in new cancer diagnoses by August 2020, surgery by July 2020, and pathology reports by September 2020. From April 2020 to June 2021, there was a 13% decrease in radiotherapy (RT) fractions, an 18% decrease in UCC visits, and a 52% decrease in in-person visits. There was no change in intravenous chemotherapy visits per month, first RT visits, or overall patient visits. The impact of COVID-19 on shifts in the stage at diagnosis and survival will be assessed in future analyses.

Impact of Telemedicine Use by Oncology Physicians on the Patient and Informal Caregiver Experience of Receiving Care: Protocol for a Scoping Review in the Context of COVID-19.

BACKGROUND: During the COVID-19 pandemic, the use of telemedicine by oncology physicians in Manitoba, Canada, has increased to limit the risk of exposure to the virus for both patients and health care providers. It is not clear how telemedicine impacts the information needs of patients or the experience of receiving cancer care. OBJECTIVE: The objective of this study is to describe how the use of telemedicine impacts the information needs and experience of patients with cancer and their informal caregivers (ie, family and friends) and identify directions for future research. METHODS: This review will include all studies addressing telemedicine in the cancer context including those using quantitative, qualitative, and mixed methods approaches. This scoping review will be conducted using the methodology described by the Joanna Briggs Institute. In collaboration with a librarian scientist specializing in health sciences, a comprehensive search will be undertaken to identify and retrieve relevant reports published in English from 1990 to the present. Databases searched will include MEDLINE, CINAHL, EMBASE, Scopus, Cochrane Library, and PsycINFO. Data will be extracted by two independent reviewers, synthesized, and reported in a summary table and in a narrative format describing what has been reported regarding the impact of telemedicine by physicians in oncology on the experience of patients and their informal caregivers and their receipt of information. RESULTS: The results from this scoping review are expected to be available by late spring 2021. CONCLUSIONS: The results from this scoping review will be useful for informing practice as well as directing future research, both in the context of COVID-19 and beyond. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/25501.

An Examination of Lymph Node Sampling as a Predictor of Survival in Resected Node-Negative Small Bowel Adenocarcinoma: a SEER Database Analysis.

BACKGROUND: Small bowel adenocarcinoma (SBA) is a rare disease. Current recommendations are largely extrapolated from the colorectal literature. For node-negative (N -ve) cases, optimally stratifying cases into high or low risk, may help define optimal management. The objective of this analysis was to determine the importance of lymph node sampling for prognostication and to define what number of lymph nodes sampled is adequate. METHODS: Cases of non-metastatic SBA with complete staging, pathologic, and demographic information were selected from the SEER database and SAS 9.4 software was used. Variables included age, gender, race, grade, TNM staging, and number of lymph nodes were examined. Comparisons were made between N -ve and N +ve cases. Survival analysis using N -ve cases was performed to characterize the impact of nodal sampling on survival and to determine which nodal cut-offs best predict survival. RESULTS: A total of 523 cases from 2004 to 2014 were included in this analysis. Statistically significant differences identified included the median number of nodes sampled between the N -ve and N +ve groups, and the distribution of T stage and grade. Survival analysis in the N -ve cases demonstrated that the strongest predictor of survival was sampling of 16 or more lymph nodes. CONCLUSION: In this analysis, lymph node sampling was shown to be the most important pathologic predictor of survival in cases of N -ve SBA. Replicating these findings in a secondary dataset and determining whether a clinical benefit of adjuvant chemotherapy exists for SBA patients with inadequate sampling are both important next steps.