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PURPOSE: This trial examined if patients with ≤5 sites of oligoprogression benefit from the addition of stereotactic ablative radiotherapy (SABR) to standard of care (SOC) systemic therapy. METHODS: We enrolled patients with 1-5 metastases progressing on systemic therapy, and after stratifying by type of systemic therapy (cytotoxic vs. non-cytotoxic), randomized 1:2 between continued SOC treatment vs. SABR to all progressing lesions plus SOC. The trial was initially limited to non-small cell lung cancer but was expanded to include all non-hematologic malignancies to meet accrual goals. The primary endpoint was progression-free survival (PFS). Secondary endpoints included overall survival (OS), lesional control, quality of life, adverse events (AEs), and duration of systemic therapy post-randomization. RESULTS: Ninety patients with 127 oligoprogressive metastases were enrolled across 8 Canadian institutions, with 59 randomized to SABR and 31 to SOC. Median age was 67 years and 39 (43%) were female. The most common primary sites were lung (44%), genitourinary (23%) and breast (13%). Protocol adherence in the SOC arm was suboptimal, with 11 patients (35%) either receiving high-dose/ablative therapies (conflicting with trial protocol) or withdrawing from the study. Median follow-up was 31 months. There was no difference in PFS between arms (median PFS 8.4 months in the SABR arm vs. 4.3 months in the SOC arm but curves cross and 2-year PFS was 9% vs. 24% respectively, p=0.91). Median OS was 31.2 months vs. 27.4 months, respectively (p=0.22). Lesional control was superior with SABR (70% vs. 38% respectively, p=0.0015). There were 2 (3.4%) grade 3 and no grade 4/5 AEs attributable to SABR. CONCLUSION: SABR was well-tolerated with superior lesional control but did not improve PFS or OS. Accrual to this study was difficult, and the results may have been impacted by an unwillingness to forgo ablative treatments on the SOC arm. (NCT02756793).
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PURPOSE: The use of stereotactic body radiation therapy for tumors in close proximity to the central mediastinal structures has been associated with a high risk of toxicity. This study (NCT03306680) aimed to determine the maximally tolerated dose of stereotactic body radiation therapy for ultracentral non-small cell lung carcinoma, using a time-to-event continual reassessment methodology. METHODS AND MATERIALS: Patients with T1-3N0M0 (≤6 cm) non-small cell lung carcinoma were eligible. The maximally tolerated dose was defined as the dose of radiation therapy associated with a ≤30% rate of grade (G) 3 to 5 prespecified treatment-related toxicity occurring within 2 years of treatment. The starting dose level was 60 Gy in 8 daily fractions. The dose-maximum hotspot was limited to 120% and within the planning tumor volume; tumors with endobronchial invasion were excluded. This primary analysis occurred 2 years after completion of accrual. RESULTS: Between March 2018 and April 2021, 30 patients were enrolled at 5 institutions. The median age was 73 years (range, 65-87) and 17 (57%) were female. Planning tumor volume was abutting proximal bronchial tree in 19 (63%), esophagus 5 (17%), pulmonary vein 1 (3.3%), and pulmonary artery 14 (47%). All patients received 60 Gy in 8 fractions. The median follow-up was 37 months (range, 8.9-51). Two patients (6.7%) experienced G3-5 adverse events related to treatment: 1 patient with G3 dyspnea and 1 G5 pneumonia. The latter had computed tomography findings consistent with a background of interstitial lung disease. Three-year overall survival was 72.5% (95% CI, 52.3%-85.3%), progression-free survival 66.1% (95% CI, 46.1%-80.2%), local control 89.6% (95% CI, 71.2%-96.5%), regional control 96.4% (95% CI, 77.2%-99.5%), and distant control 85.9% (95% CI, 66.7%-94.5%). Quality-of-life scores declined numerically over time, but the decreases were not clinically or statistically significant. CONCLUSIONS: Sixty Gy in 8 fractions, planned and delivered with only a moderate hotspot, has a favorable adverse event rate within the prespecified acceptability criteria and results in excellent control for ultracentral tumors.
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Importance: Patients with interstitial lung disease (ILD) and early-stage non-small cell lung cancer (NSCLC) have been reported to be at high risk of toxic effects after stereotactic ablative radiotherapy (SABR), but for many patients, there are limited alternative treatment options. Objective: To prospectively assess the benefits and toxic effects of SABR in this patient population. Design, Setting, and Participants: This prospective cohort study was conducted at 6 academic radiation oncology institutions, 5 in Canada and 1 in Scotland, with accrual between March 7, 2019, and January 12, 2022. Patients aged 18 years or older with fibrotic ILD and a diagnosis of T1-2N0 NSCLC who were not candidates for surgical resection were enrolled. Intervention: Patients were treated with SABR to a dose of 50 Gy in 5 fractions every other day. Main Outcomes and Measures: The study prespecified that SABR would be considered worthwhile if median overall survival-the primary end point-was longer than 1 year, with a grade 3 to 4 risk of toxic effects less than 35% and a grade 5 risk of toxic effects less than 15%. Secondary end points included toxic effects, progression-free survival (PFS), local control (LC), quality-of-life outcomes, and changes in pulmonary function. Intention-to-treat analysis was conducted. Results: Thirty-nine patients enrolled and received SABR. Median age was 78 (IQR, 67-83) years and 59% (n = 23) were male. At baseline, 70% (26 of 37) of patients reported dyspnea, median forced expiratory volume in first second of expiration was 80% (IQR, 66%-90%) predicted, median forced vital capacity was 84% (IQR, 69%-94%) predicted, and median diffusion capacity of the lung for carbon monoxide was 49% (IQR, 38%-61%) predicted. Median follow-up was 19 (IQR, 14-25) months. Overall survival at 1 year was 79% (95%, CI 62%-89%; P < .001 vs the unacceptable rate), and median overall survival was 25 months (95% CI, 14 months to not reached). Median PFS was 19 months (95% CI, 13-28 months), and 2-year LC was 92% (95% CI, 69%-98%). Adverse event rates (highest grade per patient) were grade 1 to 2: n = 12 (31%), grade 3: n = 4 (10%), grade 4: n = 0, and grade 5: n = 3 (7.7%, all due to respiratory deterioration). Conclusions and Relevance: In this trial, use of SABR in patients with fibrotic ILD met the prespecified acceptability thresholds for both toxicity and efficacy, supporting the use of SABR for curative-intent treatment after a careful discussion of risks and benefits. Trial Registration: ClinicalTrials.gov Identifier: NCT03485378.
Subject(s)
Carcinoma, Non-Small-Cell Lung , Lung Diseases, Interstitial , Lung Neoplasms , Radiosurgery , Humans , Carcinoma, Non-Small-Cell Lung/radiotherapy , Carcinoma, Non-Small-Cell Lung/pathology , Carcinoma, Non-Small-Cell Lung/surgery , Lung Diseases, Interstitial/etiology , Male , Lung Neoplasms/radiotherapy , Lung Neoplasms/pathology , Female , Radiosurgery/adverse effects , Radiosurgery/methods , Aged , Prospective Studies , Middle Aged , Aged, 80 and over , Quality of Life , CanadaABSTRACT
BACKGROUND: The novel coronavirus that has triggered the present COVID-19 pandemic continues to spread globally, resulting in widespread morbidity and mortality. Patients with cancer remain one of the most vulnerable subsets of the population to the disease. This study examined the effects of the pandemic on cancer patients' treatment, psychology, knowledge, attitudes, and practices. METHODS: A survey was emailed to 9861 patients at a cancer centre in Toronto, Canada. Descriptive results were summarized. Qualitative feedback was coded and summarized. Regression modelling was used to explore factors associated with patient psychological well-being, knowledge, attitudes, and practices. RESULTS: A total of 1760 surveys were completed, with a response rate of 17.8%. Most participants did not experience any pandemic-related treatment delays, and vaccination rates were high. Participants who identified themselves as non-white (OR 3.30, CI: 1.30-5.30; p ≤ 0.001), and those who referred to journal articles for information (p = 0.002) reported higher psychological impact scores. There were no significant predictors of whether participants would use personal protective equipment when leaving their homes or whether they would go to crowded places. DISCUSSION: This study provides another snapshot of cancer patients perceptions and needs during the COVID-19 pandemic.
Subject(s)
COVID-19 , Neoplasms , Humans , Pandemics , COVID-19/epidemiology , Health Knowledge, Attitudes, Practice , SARS-CoV-2 , Neoplasms/therapyABSTRACT
BACKGROUND: The objective of this study was to describe the clinical presentation and outcomes of human papillomavirus (HPV)-positive nasopharyngeal cancer (NPC) versus Epstein-Barr virus (EBV)-positive NPC and HPV-positive oropharyngeal cancer (OPC). METHODS: Clinical characteristics and presenting signs/symptoms were compared between patients who had viral-related NPC versus viral-related OPC treated with intensity-modulated radiotherapy from 2005 to 2020 and who were matched 1:1 (by tumor and lymph node categories, smoking, age, sex, histology, and year of diagnosis). Locoregional control (LRC), distant control (DC), and overall survival (OS) were compared using the 2005-2018 cohort to maintain 2 years of minimum follow-up. Multivariable analysis was used to evaluate the cohort effect. RESULTS: Similar to HPV-positive OPC (n = 1531), HPV-positive NPC (n = 29) occurred mostly in White patients compared with EBV-positive NPC (n = 422; 86% vs. 15%; p < .001). Primary tumor volumes were larger in HPV-positive NPC versus EBV-positive NPC (median volume, 51 vs. 23 cm3 ; p = .002), with marginally more Level IB nodal involvement. More patients with HPV-positive NPC complained of local pain (38% vs. 3%; p = .002). The median follow-up for the 2005-2018 cohort was 5.3 years. Patients who had HPV-positive NPC (n = 20) had rates of 3-year LRC (95% vs. 90%; p = .360), DC (75% vs. 87%; p = .188), and OS (84% vs. 89%; p = .311) similar to the rates in those who had EBV-positive NPC (n = 374). Patients who had HPV-positive NPC also had rates of LRC (95% vs. 94%; p = .709) and OS (84% vs. 87%; p = .440) similar to the rates in those who had HPV-positive OPC (n = 1287). The DC rate was lower in patients who had HPV-positive disease (75% vs. 90%; p = .046), but the difference became nonsignificant (p = .220) when the analysis was adjusted for tumor and lymph node categories, smoking, and chemotherapy. CONCLUSIONS: HPV-positive NPC and EBV-positive NPC seem to be mutually exclusive diseases. Patients who have HPV-positive NPC have greater local symptom burden and larger primary tumors but have similar outcomes compared with patients who have EBV-positive NPC or HPV-positive OPC.
Subject(s)
Alphapapillomavirus , Epstein-Barr Virus Infections , Nasopharyngeal Neoplasms , Oropharyngeal Neoplasms , Papillomavirus Infections , DNA, Viral , Epstein-Barr Virus Infections/complications , Epstein-Barr Virus Infections/epidemiology , Herpesvirus 4, Human/genetics , Humans , Nasopharyngeal Carcinoma , Nasopharyngeal Neoplasms/epidemiology , Nasopharyngeal Neoplasms/therapy , North America , Papillomaviridae/genetics , Papillomavirus Infections/complications , PrognosisABSTRACT
OBJECTIVES: The cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs. METHODS: A scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles. RESULTS: 119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs. CONCLUSION: Most caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs. PRACTICE IMPLICATIONS: Clinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.
Subject(s)
Caregivers , Neoplasms , Adaptation, Psychological , Caregivers/psychology , Humans , Neoplasms/therapy , Psychosocial Support Systems , Quality of LifeABSTRACT
BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has caused enormous strain on public health. Patients with cancer are particularly susceptible to the disease, and their treatment plans have been threatened by public health restrictions designed to contain the spread. METHODS: This study examined the effects of the pandemic on cancer patients' psychology, knowledge, attitudes, and practices concerning COVID-19 as well as their perceptions of the impact of COVID-19 on their cancer health care services. A survey was sent to 5800 patients at a cancer center in Toronto, Canada. Descriptive results were summarized. Qualitative feedback was coded and summarized. To examine for potential associations, regression models were tested for the outcomes of patient psychological well-being, knowledge, attitudes, and practices, and they accounted for several demographic, health literacy, and disease variables. RESULTS: A total of 1631 surveys were completed. Most patients saw their appointments shifted to virtual visits, and for a substantial minority, there was no change. A majority of the patients (62%) expressed fears about contracting the virus. There were no independent predictors of COVID-19-related knowledge. Fears were more pronounced among patients who did not speak English and those who used social media more often. Female participants, those who scored higher on knowledge questions, and those who used cancer center materials were more likely to take preventative measures against infection. CONCLUSIONS: This study provides a snapshot of the state of cancer patient treatment and the knowledge, attitudes, and practices of patients between the first 2 waves of the pandemic. The study's results can inform our understanding of adaptation to conditions during and after the outbreak.
Subject(s)
COVID-19 , Neoplasms , Cross-Sectional Studies , Female , Health Knowledge, Attitudes, Practice , Humans , Neoplasms/therapy , Pandemics , SARS-CoV-2 , Surveys and QuestionnairesABSTRACT
Feedback delivery and training have not been characterized in the context of academic cancer centres. The purpose of this study was to assess the feasibility and utility of a microlearning course based on the R2C2 (Relationship, Reaction, Content, Coaching) feedback model and characterize multidisciplinary healthcare provider (HCP) perspectives on existing feedback practices in an academic cancer centre. Five HCP (two radiation oncologists, one medical oncologist, and two allied health professionals) with supervisory roles were selected by purposive sampling to participate in a prospective longitudinal qualitative study. Each participant completed a web-based multimedia course. Semi-structured one-on-one interviews were conducted with each participant at four time points: pre- and immediately post-course, and at one- and three-months post course. All participants found the course to be time feasible and completed it in 10-20 min. Participants expressed that the course fulfilled their need for feedback training and that its adoption may normalize a feedback culture in the cancer centre. Three themes were identified regarding perceptions of existing feedback practices: (1) hierarchical and interdisciplinary relationships modulate feedback delivery, (2) interest in feedback delivery varies by duration of the supervisory relationship, and (3) the transactionality of supervisor-trainee relationships influences feedback delivery. This study demonstrates the perceived feasibility and utility of a digital microlearning approach for development of feedback competencies in an academic cancer centre, perceptions of cultural barriers to feedback delivery, and the need for organizational commitment to developing a feedback culture.
Subject(s)
Mentoring , Neoplasms , Humans , Feedback , Prospective Studies , Qualitative Research , Neoplasms/therapyABSTRACT
Collaborative partnerships, which link two health organizations with shared characteristics to achieve common goals and to improve healthcare quality, are becoming increasingly common in oncology. The purpose of this study is to review the collaboration between King Hussein Cancer Center (KHCC) and Princess Margaret Cancer Centre (PM). The context, input, process, and product (CIPP) model, a quasi-experimental form of program evaluation, has been applied to the KHCC-PM collaboration. This model is well suited to evaluate complex collaborations as it does not assume linear relationships. Data sources include stakeholders' judgements of the collaboration, assessment of achievements, and informal interviews with key participants involved in the program. KHCC and PM are recognized as high-caliber comprehensive cancer centers, with a common goal of delivering high-quality care to patients. Through personal relationships among faculty in the centers and the perceived opportunities for mutual benefit, KHCC and PM signed a memorandum of understanding in 2013 to enter into a formal partnership. This partnership has been an evolving process that started with collaboration on education and grew to include clinical care. Research is an area for potential future collaboration. Enabling factors in the collaboration include dedication of individuals involved, trusting relationships amongst faculty, and the reciprocal nature of the relationship. Challenges have been financial, competing interests, and the absence of a successful collaborative model to follow. The KHCC and PM collaboration has been successful. A strategic plan is being developed and followed to guide areas of expansion.
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Neoplasms , Humans , Medical Oncology , Neoplasms/therapy , Program Evaluation , Quality of Health CareABSTRACT
Despite evidence for the superiority of twice-daily (BID) radiotherapy schedules, their utilization in practice remains logistically challenging. Hypofractionation (HFRT) is a commonly implemented alternative. We aim to compare the outcomes and toxicities in limited-stage small-cell lung cancer (LS-SCLC) patients treated with hypofractionated versus BID schedules. A bi-institutional retrospective cohort review was conducted of LS-SCLC patients treated with BID (45 Gy/30 fractions) or HFRT (40 Gy/15 fractions) schedules from 2007 to 2019. Overlap weighting using propensity scores was performed to balance observed covariates between the two radiotherapy schedule groups. Effect estimates of radiotherapy schedule on overall survival (OS), locoregional recurrence (LRR) risk, thoracic response, any ≥grade 3 (including lung, and esophageal) toxicity were determined using multivariable regression modelling. A total of 173 patients were included in the overlap-weighted analysis, with 110 patients having received BID treatment, and 63 treated by HFRT. The median follow-up was 20.4 months. Multivariable regression modelling did not reveal any significant differences in OS (hazard ratio [HR] 1.67, p = 0.38), LRR risk (HR 1.48, p = 0.38), thoracic response (odds ratio [OR] 0.23, p = 0.21), any ≥grade 3+ toxicity (OR 1.67, p = 0.33), ≥grade 3 pneumonitis (OR 1.14, p = 0.84), or ≥grade 3 esophagitis (OR 1.41, p = 0.62). HFRT, in comparison to BID radiotherapy schedules, does not appear to result in significantly different survival, locoregional control, or toxicity outcomes.
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PURPOSE: This study investigated nicotine dependence as an independent risk factor for upper aerodigestive tract (UADT) cancers, including lung and head and neck cancers (HNC). The study aimed to isolate the direct effect of nicotine dependence, independent of tobacco smoking. METHODS: A case-control study with a total of 4957 participants was conducted in Ontario, Canada, of which 2964 categorized as either current or former smokers were used in the analysis. Nicotine dependence of ever-smokers (2360 UADT cases and 604 controls) was measured using the Fagerström Test for Nicotine Dependence. Using mediation analyses and adjusted logistic regression models, we decomposed the direct effect of nicotine dependence and the mediated effect of smoking duration to quantify the risks of lung and HNC. The role of human papillomavirus (HPV) and cancer subtypes were assessed. RESULTS: Most individual nicotine dependence behaviours showed positive associations with lung cancer with approximately 1.8 to 3.5-fold risk increase, and to lesser extent with 1.4 to 2.3-fold risk for HNC. Nicotine dependence is partially accountable for increased risks of lung cancer (OR = 1.20, 95%CI = 1.13-1.28) and HNC (1.12, 95%CI = 1.04-1.19). Nicotine dependence had a greater effect on the risk of HPV-negative oropharyngeal cancer (OR = 3.06, 95%CI = 1.65-5.66) in comparison to HPV-positive oropharyngeal cancer (OR = 1.05, 95%CI = 0.67-1.65). The direct effects of nicotine dependence remained significant after accounting for cumulative tobacco exposures. CONCLUSION: Nicotine dependence increases the risks of lung and HNC cancers after accounting for tobacco smoking, suggesting potential toxic effects of nicotine. These results are informative for the safety consideration of nicotine exposures.
Subject(s)
Head and Neck Neoplasms/epidemiology , Lung Neoplasms/epidemiology , Nicotine/adverse effects , Tobacco Use Disorder/epidemiology , Aged , Case-Control Studies , Female , Head and Neck Neoplasms/etiology , Humans , Lung Neoplasms/etiology , Male , Middle Aged , Ontario/epidemiology , Risk Assessment , Risk Factors , Time Factors , Tobacco Use Disorder/complicationsABSTRACT
INTRODUCTION: Large cell neuroendocrine carcinoma is a rare, high-grade neuroendocrine tumor. The mainstay of treatment for early, node-negative disease is surgical resection, and optimal adjuvant treatment strategies are not well defined. METHODS: Patients with early, node-negative large cell neuroendocrine carcinoma were identified in the National Cancer Database from 2004 to 2014. Patient, tumor, treatment, and hospital characteristics were examined. Survival differences in patients receiving adjuvant chemotherapy (AC) were evaluated using Kaplan-Meier curves, and adjusted multivariate Cox models were constructed. A conditional landmark analysis was used to address immortal time bias. T-stage-specific propensity score matching was used to address covariate imbalances between groups. RESULTS: One thousand seven hundred seventy patients were identified, of whom 463 (26.2%) received AC. Patients receiving AC were younger, less comorbid, and more likely to have T2 tumors. AC was associated with significantly longer survival, which persisted after adjustment in Cox models, for patients overall (5-year overall survival, 59.2% vs 45.3%; hazard ratio, 0.69; 95% confidence interval, 0.58-0.82; P < .0001), T2 tumors (overall survival, 59.8% vs 42.1%; hazard ratio, 0.63; 95% confidence interval, 0.50-0.81; P < .0001), and tumors 2 to 3 cm (overall survival, 60.0% vs 42.6%; hazard ratio, 0.64; 95% confidence interval, 0.46-0.8; P = .002), but not tumors smaller than 2 cm. Adjuvant chest radiotherapy was not associated with longer survival. Sublobar resection was associated with worse overall survival compared with lobectomy (hazard ratio, 1.40; 95% confidence interval, 1.20-1.64; P < .0001). Propensity score matching confirmed these findings, but the association with survival for tumors 2 to 3 cm in size was not significant. CONCLUSIONS: In this national study of early-stage large cell neuroendocrine carcinoma, AC was associated with significantly longer survival for tumors larger than 3 cm, and possibly for tumors 2 to 3 cm. Adjuvant radiation was not associated with prolonged survival.
Subject(s)
Carcinoma, Neuroendocrine , Lung Neoplasms , Aged , Carcinoma, Neuroendocrine/mortality , Carcinoma, Neuroendocrine/pathology , Carcinoma, Neuroendocrine/therapy , Chemotherapy, Adjuvant , Female , Humans , Kaplan-Meier Estimate , Lung Neoplasms/mortality , Lung Neoplasms/pathology , Lung Neoplasms/therapy , Male , Middle Aged , Propensity Score , Retrospective StudiesABSTRACT
OBJECTIVES: As there is a dearth of information about anal cancer available at cancer centers, patients often use the Internet to search for information. This is problematic, however, because the quality of information on the Internet is variable, and the health literacy demanded is higher than the average patrons' capacity. The purposes of this study were to (1) determine the most common websites with anal cancer consumer health information, (2) identify the supportive care needs that each website addresses, and (3) evaluate the websites' quality and health literacy demand. METHODS: Medical Subject Headings (MeSH) entry terms for "Anus Neoplasms" were used in Google Canada to identify websites. Seven domains of supportive care needs were defined using Fitch's Supportive Care Framework for Cancer Care. Website quality was evaluated using the DISCERN tool. Health literacy demand was assessed using readability calculators, where best practice dictates a grade 6 or lower, and the Patient Education Material Assessment Tool (PEMAT) that computes a percentage score in 2 domains, understandability and actionability, with 80% being an acceptable score. RESULTS: Eighteen unique websites were evaluated. One website met health literacy best practices and had a "good" quality rating. Most websites addressed only 1 supportive care domain (61%), were of "fair" quality (67%), had readability scores higher than grade 6 (89%), and had PEMAT scores ranging from 41%-92% for understandability and 0-70% for actionability. CONCLUSION: The information gaps on anal cancer websites warrant a need for more health literate anal cancer health information on the Internet.
Subject(s)
Anus Neoplasms/prevention & control , Consumer Health Information/standards , Health Literacy/standards , Information Dissemination/methods , Patient Education as Topic/standards , Data Accuracy , Humans , Internet/standardsABSTRACT
BACKGROUND: The benefits of patient-reported outcome measures (PROMs) are well known; however, their readability has come into question because multiple PROMs have been found to be incomprehensible to patients. This is a critical safety and equity consideration because PROMs are increasingly being integrated into routine clinical practice. A key strategy for promoting patient comprehension is the use of plain language. The aim of this study was to determine whether PROMs routinely used in the cancer setting meet plain-language best practices. METHODS: To report the plain-language level of each PROM, readability (Fry Readability Graph, Simple Measure of Gobbledygook, Flesch Reading Ease, and FORCAST) and understandability assessments (Patient Education Materials Assessment Tool [PEMAT] for Printable Materials) were performed. PROMs at grade level 6 or lower and with PEMAT scores greater than 80% were considered to meet plain-language best practices. PROMs were divided into 4 domains (physical, emotional, social, and quality of life) and 17 dimensions (eg, pain was a dimension of the physical domain). A subanalysis was conducted to determine whether specific domains and dimensions were more likely to adhere to plain-language best practices. RESULTS: More than half of the 45 PROMs evaluated (n = 33 [73%]) had a grade level higher than 6. Understandability scores ranged from 29% to 100%. The majority of the PROMs that did not meet plain-language best practices were within the physical and emotional domains and focused on the patient's symptom experience. CONCLUSIONS: This evaluation shows that more than half of the most commonly used cancer PROMs do not meet plain-language best practices. Practice implications include the necessity for plain-language assessment during the PROM validation process, the consideration of plain language in PROM selection, and plain-language review and editing of low-scoring PROMs.
Subject(s)
Comprehension , Neoplasms/therapy , Patient Reported Outcome Measures , Health Literacy , Humans , Quality of LifeABSTRACT
BACKGROUND: Increasing demands on health care systems require patients to take on more active roles in their health. Effective self-management has been linked to improved health outcomes, and evidence shows that effective self-management is linked to health literacy (HL). HL is an important predictor of successful self-management in other chronic diseases but has had minimal testing in cancer. METHODS: A scoping review was conducted to examine and summarize what is known about the association between HL and self-management behaviors and health service utilization in the cancer setting. The methodological framework articulated by Arksey and O'Malley was used and was further refined with the Joanna Briggs Institute methodology. Inclusion criteria included the following: peer review; publication in English; and adult patients and caregivers of all races, ethnicities, and cultural groups. Use of a validated instrument to measure HL was required. RESULTS: The search yielded 2414 articles. After the removal of duplicates and the performance of title scans and abstract reviews, the number was reduced to 44. Of the 44 full-text articles reviewed, 17 met the inclusion criteria. A number of important self-management behaviors and related outcomes were found to be associated with HL. These included the uptake of cancer screening, the receipt of prescribed chemotherapy, and a greater risk of postoperative complications. CONCLUSIONS: This literature review shows that HL is associated with important self-management behaviors in cancer. The implications of these associations for individuals with inadequate HL and for the health care system are significant. More research is needed to explore these associations.
Subject(s)
Health Behavior , Health Literacy/statistics & numerical data , Neoplasms/epidemiology , Neoplasms/therapy , Self-Management , Antineoplastic Agents/therapeutic use , Drug-Related Side Effects and Adverse Reactions/epidemiology , Drug-Related Side Effects and Adverse Reactions/therapy , Early Detection of Cancer/methods , Early Detection of Cancer/psychology , Early Detection of Cancer/statistics & numerical data , Humans , Postoperative Complications/epidemiology , Postoperative Complications/therapy , Self Care/methods , Self Care/psychology , Self Care/standards , Self Care/statistics & numerical data , Self-Management/psychology , Self-Management/statistics & numerical dataABSTRACT
PURPOSE: Continued smoking after a cancer diagnosis leads to poorer treatment outcomes, survival, and quality of life. We evaluated the perceptions of the effects of continued smoking on quality of life, survival, and fatigue among patients with cancer after a cancer diagnosis and the effects of these perceptions on smoking cessation. PATIENTS AND METHODS: Patients with cancer from all disease subsites from Princess Margaret Cancer Centre (Toronto, Ontario) were surveyed between April 2014 and May 2016 for sociodemographic variables, smoking history, and perceptions of continued smoking on quality of life, survival, and fatigue. Multivariable regression models evaluated the association between patients' perceptions and smoking cessation and the factors influencing patients' perceptions of smoking. RESULTS: Among 1,121 patients, 277 (23%) were smoking cigarettes up to 1 year before diagnosis, and 54% subsequently quit; 23% had lung cancer, and 27% had head and neck cancers. The majority felt that continued smoking after a cancer diagnosis negatively affected quality of life (83%), survival (86%), and fatigue (82%). Current smokers during the peridiagnosis period were less likely to perceive that continued smoking was harmful when compared with ex-smokers and never-smokers ( P < .01). Among current smokers, perceiving that smoking negatively affected quality of life (adjusted odds ratio [aOR], 2.68 [95% CI, 1.26 to 5.72]; P = .011), survival (aOR, 5.00 [95% CI, 2.19 to 11.43]; P < .001), and fatigue (aOR, 3.57 [95% CI, 1.69 to 7.54]; P < .001) were each strongly associated with smoking cessation. Among all patients, those with a greater smoking history were less likely to believe that smoking was harmful in terms of quality of life (aOR, 0.98 [95% CI, 0.98 to 0.99]; P < .001), survival (aOR, 0.98 [95% CI, 0.98 to 0.99]; P < .001), and fatigue (aOR, 0.99 [95% CI, 0.98 to 0.99]; P < .001). CONCLUSION: The perceptions of continued smoking after a cancer diagnosis among patients with cancer are strongly associated with smoking cessation. Counseling about the harms of continued smoking in patients with cancer, and in particular among those who have lower risk perceptions, should be considered when developing a smoking cessation program.
Subject(s)
Neoplasms/epidemiology , Neoplasms/psychology , Perception , Smoking Cessation , Smoking , Adult , Aged , Female , Humans , Male , Middle Aged , Neoplasms/mortality , Odds Ratio , Ontario/epidemiology , Public Health Surveillance , Quality of Life , Smoking/adverse effects , Socioeconomic FactorsABSTRACT
BACKGROUND: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. OBJECTIVE: The purpose of this research study was to deconstruct patrons' information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons' information needs (collection development). METHODS: We employed a qualitative, instrumental case study to deconstruct patrons' health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. RESULTS: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants' conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61%), although almost half of these required special access (47%). CONCLUSIONS: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian's ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress.