¿Es sustentable la aplicación de las guías de práctica clínica en la práctica clínica del mundo real? / Is the application of clinical practice guidelines sustainable in real-world clinical practice?

Las guías de práctica clínica han contribuido a resolver un problema al sintetizar la evidencia y ponerla al alcance del profesional sanitario, pero su desarrollo e implementación creciente en los últimos años ha dado lugar a nuevos inconvenientes que aún no han sido resueltos. En este artículo editorial, la autora repasa cuestiones no tenidas en cuenta por las guías de práctica clínica, incluso aquellas consideradas de buena calidad de acuerdo a los estándares actuales, y reflexiona en especial sobre el uso del tiempo de los médicos en la consulta, aspecto desatendido que atenta contra la sustentabilidad del modelo actual de cuidado propuesto por estas recomendaciones. (AU)

Clinical practice guidelines have contributed to solving a problem by synthesizing the evidence and making it available to healthcare professionals, but their development and increasing implementation in recent years has given rise to new problems that have not yet been resolved. In this editorial article, the author reviews issues not taken into account by clinical practice guidelines, even those considered to be of good quality according to current standards, and reflects inparticular on the use of physicians' time in the consultation, a neglected aspect that undermines the sustainability of the current care model proposed by these recommendations. (AU)

Disparities and trends in the participation of minorities, women, and the elderly in breast, colorectal, lung, and prostate cancer clinical trials.

BACKGROUND: This study was done to determine the representation of minorities, women, and the elderly in National Cancer Institute (NCI) clinical trials. METHODS: This is an analysis in the NCI Clinical Data Update System. Patients were evaluated in breast, colorectal, lung, and prostate cancer trials from 2000 to 2019. Representation in a trial was determined by race/ethnicity, sex, and age. Secondarily, the change in trial participation by multivariable analysis by comparing years 2000 through 2004 to 2015 through 2019 was evaluated. RESULTS: The cohort included 242,720 participants: 197,320 Non-Hispanic White (81.3%), 21,190 Black (8.7%), 11,587 Hispanic (4.8%), and 6880 Asian/Pacific Islander (2.8%). Black and Hispanic patients were underrepresented for colorectal (odds ratio [OR], 0.58; 95% confidence interval [CI], 0.50-0.67; P < .001 and OR, 0.74; 95% CI, 0.64-0.87; P < .001, respectively), lung (OR, 0.83; 95% CI, 0.76-0.91; P < .001 and 0.66; 95% CI, 0.57-0.77; P < .001, respectively), and prostate cancer trials (OR, 0.85; 95% CI, 0.79-0.92; P < .001 and OR, 0.58; 95% CI, 0.51-0.66; P < .001) between 2015 and 2019. The odds of participation in 2015 to 2019 increased among Black patients in breast (OR, 2.19; 95% CI, 2.07-%2.32; P < .001), lung (OR, 1.54; 95% CI, 1.38-1.73; P < .001), and prostate cancer trials (OR, 1.14; 95% CI, 1.04-1.26; P < .001). The odds of participation in a trial among Hispanic patients increased for breast (OR, 3.32; 95% CI, 3.09-3.56; P < .001), colorectal (OR, 2.46; 95% CI, 2.04-2.96; P < .001), lung (OR, 3.88; 95% CI, 3.20-4.69; P < .001), and prostate cancer (OR, 1.70; 95% CI, 1.42-2.04; P = .005). CONCLUSIONS: This study identified that Black and Hispanic patients remain underrepresented in trials, but in recent years, participation has increased. These findings indicate that minority participation has increased over time, but further efforts are needed.

The long term participation trend for the colorectal cancer screening after the 2011 triple disaster in Minamisoma City, Fukushima, Japan.

Colorectal cancer (CRC) screening is a well-established cancer screening method, and its effectiveness depends on maintaining a high participation rate in the target population. In this study, we analyzed the trends in CRC screening participation rates over 10 years in Minamisoma City, where residents were forced to evacuate after the 2011 triple disaster in Fukushima, Japan. The immunochemical fecal occult blood test is provided as municipal CRC screening. We calculated the annual CRC screening participation rate and analyzed the factors associated with participation in screening. Overall, 4069 (12.3%) and 3839 (11.7%) persons participated in CRC screening in 2009 and 2010, respectively; however, the number decreased significantly to 1090 (3.4%) in 2011 when the earthquake occurred. Over the following 3 years, the rate gradually recovered. Multivariable logistic analysis showed that age < 65 years, living alone, and evacuation were significant associated factors for non-participation after 2011 (p < 0.05). In conclusion, the CRC screening participation rate decreased significantly during the Great East Japan Earthquake but recovered over the next 3 years. Further analysis of factors preventing CRC screening participation and research on the long-term effects of its post-disaster decline are important to consider in assessing the need for intervention in post-disaster cancer screening.

Accrual Trends for Children's Oncology Group Clinical Trials: A Single Center Experience.

Children's Oncology Group (COG) has been highly successful in improving childhood cancer survival through well-designed multi-institutional clinical trials. However, our center has recognized a decline in the number of enrollments on COG therapeutic clinical trials over recent years. Our single center, retrospective analysis evaluated in detail the patient enrollment rates, annual number of available clinical trials and reason for nonenrollment over the last decade. We found a 61% decrease in enrollment for phase II to III trials of newly diagnosed patients at our center (2011-2018) along a 29% decrease in the number of open COG studies annually. The primary reason for nonenrollment was unavailability of a suitable trial (76%). We also recognized a decrease in number of adolescent and young adult enrollment particularly in the last 8 years (2010-2018); however, the enrollment rate for adolescent and young adults was not substantially different than enrollment of children. The reasons for reduced enrollments are most likely multifactorial and complex. It is imperative that we continue to develop novel clinical studies using a portfolio of federal, investigator-initiated, and industry trials for pediatric oncology patients to continue to advance outcomes, study survivorship, and improve quality of life for these patients.

Patient and site characteristics associated with pirfenidone and nintedanib use in the United States; an analysis of idiopathic pulmonary fibrosis patients enrolled in the Pulmonary Fibrosis Foundation Patient Registry.

BACKGROUND: Pragmatic use of the anti-fibrotic medications pirfenidone and nintedanib for idiopathic pulmonary fibrosis (IPF) in the United States (US) has not been studied and may be different from international settings due to structural differences between health care systems. This study examined the relationship between patient- and site-level characteristics and anti-fibrotic (a) use and (b) selection. METHODS: Data from the Pulmonary Fibrosis Foundation Patient Registry was used to perform univariable and multivariable regressions with generalized linear mixed models. A random effects model examined registry site variation. RESULTS: 703 of 1218 (57.7%) patients were taking a single anti-fibrotic of which 312 (44.4%) were taking nintedanib and 391 (55.6%) were taking pirfenidone. Up to 25% of patients using an anti-fibrotic may have been excluded from clinical trial participation due to having too severe disease as measured by diffusion limitation for carbon monoxide. Age (OR = 0.974, p = 0.0086) and diffusion capacity of the lungs for carbon monoxide (per 10% increase in percent-predicted; OR = 0.896, p = 0.0007) was negatively associated with anti-fibrotic use while time (in log of days) since diagnosis (OR = 1.138, p < 0.0001), recent patient clinical trial participation (OR = 1.569, p = 0.0433) and oxygen use (OR = 1.604, p = 0.0027) was positively associated with anti-fibrotic use. Time (log of days) since diagnosis (OR = 1.075, p = 0.0477), history of coronary artery disease (OR = 1.796, p = 0.0030), presence of pulmonary hypertension (OR = 2.139, p = 0.0376), patient clinical trial participation in the prior 12 months (OR = 2.485, p = 0.0002), diffusion capacity of the lungs for carbon monoxide (per 10% increase in percent-predicted; OR = 1.138, p = 0.0184), anticoagulant use (OR = 2.507, p = 0.0028), and enrollment at a registry site in the Midwest region (OR = 1.600, p = 0.0446) were associated with pirfenidone use. Anti-fibrotic use varied by registry site. Rates of discontinuation were modest and nearly identical for the two medications with side effects being the most common reason given for discontinuation. Twenty-three percent (23%, 274) of persons with IPF were using or had recently used an immunomodulatory agent. CONCLUSIONS: This analysis provides a detailed characterization of IPF treatment patterns in the US; many users of anti-fibrotic medications may not have qualified for inclusion in clinical trials. More research is needed to understand variations in medical decision-making for use and selection of anti-fibrotic medication.

Patients' perspectives on participation in clinical trials and subsequent ethical challenges in a hospital setting in Jordan.

Background The number of global clinical trials is increasing. Recruitment rate in clinical trials is a challenging task that affects sample size, power of the study, and adequate representation of the targeted population. An understanding of the worries and reasons why patients may refrain from participation in trials may lead to improved enrollment rates. Objectives To assess the rate of patients who are willing to participate in clinical trials, and aspects that might have an impact on the patients' willingness to participate. Setting Government tertiary hospital in Jordan. Methods This is a cross-sectional study. Patients were interviewed by pharmacists in different clinics in a tertiary hospital and information was collected using a data collection sheet. Main outcome measure Factors that might predict the inclination of a patient to participate in clinical trials, and the rate of willingness to participation in randomized controlled trials in cancer patients compared to non-cancer patients. Results A total of 1193 participants were enrolled in the study, one hundred and thirty-five participants (11.3%) had cancer and 80% of the participants had at least one chronic medical condition. Majority of patients (n = 882, 73.9%) believed that trials were safe and 1106 (92.7%) patients thought they were important. Age, education level, income, having cancer or any chronic medical condition, and degree of control of chronic diseases were statistically significant predictors of the willingness of patients to participate in trials. Patients with cancer had a higher rate of acceptance to participation in randomized controlled trials compared to non-cancer patients, 80.0% versus 62.4%, p value < 0.001. Conclusion In general, almost two-thirds of patients were willing to participate in clinical trials, with a higher rate in cancer patients. Factors such as education level, income, and extent of control of medical conditions that might refrain patients from enrollment in trials will lower recruitment rate and must be addressed and taken into consideration before launching clinical trials.

[How can we improve cervical cancer screening: What can we learn from mistakes?] / Comment pouvons-nous améliorer le dépistage du cancer du col de l'utérus : que pouvons-nous apprendre des erreurs ?

Cervical cancer screening is considered one of the most significant public health interventions that can reduce not only the incidence, but also the mortality of the disease. One of the most important factors for screening effectiveness is coverage defined as the number of women tested within a recommended interval. In the first years of the cervical screening, the participation rate in National Screening Program in Romania was 14.2% with slight difference in different region of the country. In the northeastern part of the country, in the first four years of the program, the rate was 16.9% with an alarmingly continuous decrease. Thus, increasing the rate of uptake of cervical screening is essential. The policy-makers should take new measures to increase women's participation in this screening program. The objective of this paper was to review situation of the screening program and to identify gaps and needs in the system and to bring or suggest solution.

Tracking Cardiac Rehabilitation Participation and Completion Among Medicare Beneficiaries to Inform the Efforts of a National Initiative.

BACKGROUND: Despite cardiac rehabilitation (CR) being shown to improve health outcomes among patients with heart disease, its use has been suboptimal. In response, the Million Hearts Cardiac Rehabilitation Collaborative developed a road map to improve CR use, including increasing participation rates to ≥70% by 2022. This observational study provides current estimates to measure progress and identifies the populations and regions most at risk for CR service underutilization. METHODS AND RESULTS: We identified Medicare fee-for-service beneficiaries who were CR eligible in 2016, and assessed CR participation (≥1 CR session attended), timely initiation (participation within 21 days of event), and completion (≥36 sessions attended) through 2017. Measures were assessed overall, by beneficiary characteristics and geography, and by primary CR-qualifying event type (acute myocardial infarction hospitalization; coronary artery bypass surgery; heart valve repair/replacement; percutaneous coronary intervention; or heart/heart-lung transplant). Among 366 103 CR-eligible beneficiaries, 89 327 (24.4%) participated in CR, of whom 24.3% initiated within 21 days and 26.9% completed CR. Eligibility was highest in the East South Central Census Division (14.8 per 1000). Participation decreased with increasing age, was lower among women (18.9%) compared with men (28.6%; adjusted prevalence ratio: 0.91 [95% CI, 0.90-0.93]) was lower among Hispanics (13.2%) and non-Hispanic blacks (13.6%) compared with non-Hispanic whites (25.8%; adjusted prevalence ratio: 0.63 [0.61-0.66] and 0.70 [0.67-0.72], respectively), and varied by hospital referral region and Census Division (range: 18.6% [East South Central] to 39.1% [West North Central]) and by qualifying event type (range: 7.1% [acute myocardial infarction without procedure] to 55.3% [coronary artery bypass surgery only]). Timely initiation varied by geography and qualifying event type; completion varied by geography. CONCLUSIONS: Only 1 in 4 CR-eligible Medicare beneficiaries participated in CR and marked disparities were observed. Reinforcement of current effective strategies and development of new strategies will be critical to address the noted disparities and achieve the 70% participation goal.

Patient/Provider Discussions About Clinical Trial Participation and Reasons for Nonparticipation Among Adolescent and Young Adult Women with Cancer.

Purpose: Clinical trial enrollment is low among adolescents and young adults (AYAs) with cancer and may contribute to inferior survival gains in recent years in this population compared with other age groups. We investigated clinical trial participation among AYA women with cancer, and examined whether patients discussed clinical trial participation with their doctor and reasons for nonparticipation. Methods: Women with a diagnosis of breast cancer, thyroid cancer, melanoma, lymphoma, or gynecologic cancer at ages 15-39 years during 2004-2016 were identified from the North Carolina Central Cancer Registry and the Kaiser Permanente Southern California health system. During 2018-2019, a total of 1264 eligible women completed an online survey (response = 13%), which examined survivorship issues among AYAs. Results: Overall, 5% of participants reported that they had participated in a clinical trial. Most women reported that they had not discussed clinical trial participation with a medical provider (76%) and that they did not know whether a relevant trial was available for their cancer (73%). Among those who knew that a trial was available but did not participate, the most commonly reported reasons for nonparticipation included concerns about side effects of the treatment in the trial and concerns that the treatment had not been sufficiently tested. Conclusion: Only a small proportion of AYA women with cancer in our cohort reported discussing a clinical trial with a provider or knowing whether a relevant trial was available. Our findings point to opportunities to improve patient/provider communication to increase clinical trial enrollment among AYAs with cancer.

Perceptions of safety monitoring in CF clinical studies and potential impact on future study participation.

BACKGROUND: Individuals with CF and their parents cite safety concerns as barriers to participating in clinical studies. We assessed whether a brochure/infographic describing patient safety monitoring processes could reduce knowledge and attitude barriers regarding safety monitoring. We also identified factors associated with likely participation in future CF studies. METHODS: Respondents from three CF centers in the U.S. were randomly assigned to receive the safety monitoring brochure/infographic or an unrelated brochure. Fifty parents of children with CF <16, 50 adolescents with CF 16-21, and 50 adults with CF ≥22 years old were recruited to complete the study survey. Factors associated with survey responses and with reported likelihood of participating in future studies were assessed. RESULTS: Overall the safety monitoring brochure/infographic was associated with increased likelihood of future participation in non-drug studies (aOR 2.30, CI95 1.01-5.28), but not in drug studies. Non-Hispanic respondents reported greater likelihood of participating in a future drug study than Hispanic respondents (aOR 3.18, CI95 1.30-7.74). Adults with CF (aOR 2.62, CI95 1.05-6.51) and parents (aOR 4.49, CI95 1.66-12.15) were more likely than adolescents to report they would ask their care team about clinical trials. Confidence in safety monitoring was associated with reported likelihood of future participation in drug studies. CONCLUSIONS: Potential future participation in CF drug and/or non-drug studies was associated with respondent age and ethnicity, receiving the safety monitoring brochure/infographic, and confidence in safety monitoring. Our findings underscore the need for education about safety monitoring, with targeted approaches for the Hispanic CF population and adolescents.

Patient-Friendly Language to Facilitate Treatment Choice for Patients with Cancer.

Resources are needed to assist patients in understanding their diagnoses and considering treatment options. This commentary focuses on improving the language used to communicate disease and treatment information so that patients can make informed decisions.

Language barriers and the use of professional interpreters: a national multisite cross-sectional survey in pediatric oncology care.

Background: Healthcare personnel are responsible for providing patient-centered care regardless of their patients' language skills, but language barriers is identified as the main hindrances providing effective, equitable and safe care to patients with limited proficiency in a country's majority language. This study is a national multisite cross-sectional survey aiming to investigate communication over language barriers in pediatric oncology care. Material and Methods: A survey using the Communication over Language Barriers questionnaire (CoLB-q) distributed to medical doctors, registered nurses and nursing assistants at six pediatric oncology centers in Sweden (response rate 90%) using descriptive statistical analyses. Results: Professional interpreters on site were the most common solution when using an interpreter, although relatives or even children were used. The use of professional interpreters on site differed among the professions and in different clinical situations, such as medical encounter, education or procedure preparation. All professions reported that the use of professional interpreters greatly increased care relationships, patient safety and patient involvement in care. Conclusions: Healthcare personnel seem to believe that professional interpreters are crucial when caring for patients and family members who do not speak the majority language, but there is an obvious discrepancy between this belief and their use of professional interpreters.

Patient-Informed Treatment Development of Behavioral Smoking Cessation for People With Schizophrenia.

The objective of this study was to use qualitative methodology to tailor and refine an existing smoking cessation intervention for the population of people who use cigarettes and are diagnosed with schizophrenia, schizoaffective, or psychotic disorder. Successive cohort design methodology was used to iteratively modify the treatment in response to qualitative participant, therapist, and consultant feedback on the intervention. Qualitative methodology for participant feedback included analysis of semistructured interviews with participants, visualization of app utilization data, and stakeholder feedback from study therapists and consultants. Using the successive cohort design, a tailored multicomponent mobile health smoking cessation intervention was developed. The intervention included mobile contingency management (i.e., financial compensation for confirmed abstinence from smoking), pharmacotherapy for smoking cessation, cognitive-behavioral counseling sessions, and the Stay Quit app for relapse prevention. Two cohorts (N = 13) were completed in the study; after each cohort, the treatment protocol was revised. The intervention is described, as well as the qualitative findings from each cohort and subsequent changes made to the intervention based upon patient and provider feedback. Metrics of patient engagement included treatment adherence (40% in Cohort 1 and 63% in Cohort 2). Both participants and therapists reported that the intervention was helpful. Over one third of participants self-reported abstinence at posttreatment. Since qualitative methodology is often underutilized in mental health treatment development, this study demonstrates the utility of the successive cohort design for treatment development of behavior change interventions for at-risk, vulnerable populations.

Nonmetropolitan residence and other factors affecting clinical trial enrollment for adolescents and young adults with cancer in a US population-based study.

BACKGROUND: Cancer survival rates in adolescents and young adults (AYAs) have shown slow improvements in comparison with other age groups, and this may be due to lower participation in clinical trials. Little evidence has been provided regarding how nonmetropolitan residence may influence clinical trial enrollment for AYAs with cancer. This study sought to determine whether AYAs from nonmetropolitan areas have lower rates of clinical trial enrollment than their urban counterparts and to examine factors associated with enrollment variation. METHODS: Data from the National Cancer Institute's 2006 and 2013 Surveillance, Epidemiology, and End Results Patterns of Care AYA cohorts were analyzed. Patients with acute lymphoblastic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma were included (n = 3155). Urban influence codes were used to measure the rurality of the county of residence at diagnosis, which was categorized as large metropolitan, small metropolitan, or nonmetropolitan. Logistic regression compared trial participants and nonparticipants while adjusting for patient and provider factors. RESULTS: Compared with AYAs from large metropolitan counties, AYAs from small metropolitan (odds ratio [OR], 2.04; 95% confidence interval [CI], 1.57-2.64) or nonmetropolitan counties (OR, 1.86; 95% CI, 1.23-2.81) experienced greater trial enrollment. AYAs treated at a hospital with a residency program (OR, 2.27; 95% CI, 1.63-3.16) or by a pediatric oncologist (OR, 4.02; 95% CI, 3.03-5.32) were associated with greater enrollment. There was a significant interaction between rurality and hospital size, which had the greatest impact on nonmetropolitan enrollment. CONCLUSIONS: Clinical trial enrollment was higher among AYAs from nonmetropolitan counties than those from metropolitan counties, predominantly when they were treated at large hospitals.

Trends in HIV care cascade engagement among diagnosed people living with HIV in Ontario, Canada: A retrospective, population-based cohort study.

BACKGROUND: The HIV cascade is an important framework for assessing systems of care, but population-based assessment is lacking for most jurisdictions worldwide. We measured cascade indicators over time in a population-based cohort of diagnosed people living with HIV (PLWH) in Ontario, Canada. METHODS: We created a retrospective cohort of diagnosed PLWH using a centralized laboratory database with HIV diagnostic and viral load (VL) test records linked at the individual-level. Individuals enter the cohort with record of a nominal HIV-positive diagnostic test or VL test, and remain unless administratively lost to follow-up (LTFU, >2 consecutive years with no VL test and no VL test in later years). We calculated the annual percent of diagnosed PLWH (cohort individuals not LTFU) between 2000 and 2015 who were in care (≥1 VL test), on ART (as documented on VL test requisition) or virally suppressed (<200 copies/ml). We also calculated time from diagnosis to linkage to care and viral suppression among individuals newly diagnosed with HIV. Analyses were stratified by sex and age. Upper/lower bounds were calculated using alternative indicator definitions. RESULTS: The number of diagnosed PLWH increased from 8,859 (8,859-11,389) in 2000 to 16,110 (16,110-17,423) in 2015. Over this 16-year period, the percent of diagnosed PLWH who were: in care increased from 81% (63-81%) to 87% (81-87%), on ART increased from 55% (34-60%) to 81% (70-82%) and virally suppressed increased from 41% (23-46%) to 80% (67-81%). Between 2000 and 2014, the percent of newly diagnosed individuals who linked to care within three months of diagnosis or achieved viral suppression within six months of diagnosis increased from 67% to 82% and from 22% to 42%, respectively. Estimates were generally lower for females and younger individuals. DISCUSSION: HIV cascade indicators among diagnosed PLWH in Ontario improved between 2000 and 2015, but gaps still remain-particularly for younger individuals.

Patient Concerns and Perceptions Regarding Biologic Therapies in Ankylosing Spondylitis: Insights From a Large-Scale Survey of Social Media Platforms.

OBJECTIVE: Few studies have examined ankylosing spondylitis (AS) patients' concerns about and perceptions of biologic therapies, apart from traditional surveys. In this study, we used social media data to examine the knowledge, attitudes, and beliefs of AS patients regarding biologic therapies. METHODS: We collected posts published on 601 social media sites between January 1, 2016 and April 26, 2017. In each post, both an AS keyword and a biologic were mentioned. To explore themes within the collection of posts in an unsupervised manner, a latent Dirichlet allocation topic model was fit to the data set. Each discovered topic was represented as a discrete distribution over the words in the collection, similar to a word cloud. The topics were manually reviewed to identify themes, which were confirmed using thematic data analysis. RESULTS: We examined 27,416 social media posts and identified 112 themes. The majority of themes (n = 67 [60%]) focused on discussions related to AS treatment. Other themes, including the psychological impact of AS, reporting of medical literature, and AS disease consequences, accounted for the remaining 40% (n = 45). In discussions regarding AS treatment, most topics involved biologics, and most subthemes involved side effects (e.g., fatigue, allergic reactions), biologic treatment attributes (e.g., dosing, frequency), and concerns about use of biologics (e.g., increased cancer risk). Additional implicit patient needs (e.g., support) were identified using qualitative analyses. CONCLUSION: Social media revealed a dynamic range of themes governing AS patients' experience with and choice of biologic agents. The complexity of selecting biologics from among many such agents and navigating their risk/benefit profiles suggests the merit of creating online tools tailored to support patients' decision-making with regard to biologic therapies for AS.

Low participation in organized colorectal cancer screening in France: underlying ethical issues.

International studies have shown a significant reduction in colorectal cancer (CRC) mortality following the implementation of organized screening programs, given a sufficient participation rate and adequate follow-up. The French national CRC screening program has been generalized since 2008 and targets 18 million men and women aged 50-74 years. Despite broad recommendations, the participation rate remains low (29.8%), questioning the efficiency of the program. A panel of experts was appointed by the French National Cancer Institute to critically examine the place of autonomy and efficiency in CRC screening and propose recommendations. In this paper, we explore the ethical significance of a public health intervention that falls short of its objectives owing to low take-up by the population targeted. First, we analyze the reasons for the low CRC screening participation. Second, we examine the models that can be proposed for public health actions, reconciling respect for the individual and the collective good. Our expert panel explored possible ways to enhance take-up of CRC screening within the bounds of individual autonomy, adapting awareness campaigns, and new educational approaches that take into account knowledge and analysis of sociocultural hurdles. Although public health actions must be universal, target actions should nonetheless be developed for nonparticipating population subgroups.

Current trends in patient and public involvement in cancer research: A systematic review.

BACKGROUND: Patient and public involvement (PPI) in health research is on the rise worldwide. Within cancer research, PPI ensures that the rapid development of medical and technological opportunities for diagnostics, treatment and care corresponds with the needs and priorities of people affected by cancer. An overview of the experiences, outcomes and quality of recent PPI in cancer research would provide valuable information for future research. OBJECTIVE: To describe the current state of PPI in cancer research focusing on the research stages, applied methods, stated purposes and outcomes, and challenges and recommendations. METHODS: A search was conducted on PubMed, CINAHL and PsycINFO for literature published from December 2006 to April 2017. Original research studies describing the involvement of cancer patients, stakeholders and carers as active partners at any stage of the research process were included. RESULTS: Twenty-seven studies were included, the majority reporting PPI at the early stages of research, that is, during the definition and prioritization of research topics and the development of recruitment strategies. Few studies reported PPI at later stages and across the research process. Challenges and recommendations were only briefly described, and critical reflection on the PPI process was lacking. CONCLUSION: PPI needs to be integrated more broadly in the cancer research process. The quality of reporting PPI should be strengthened through greater critical reflections including both positive and negative experiences of the PPI process. This will contribute to the further development of PPI and its potential in cancer research.