Failure to follow up abnormal test results associated with cervical cancer in primary and ambulatory care: a systematic review.

BACKGROUND: Cervical cancer is a preventable and treatable form of cancer yet continues to be the fourth most common cancer among women globally. Primary care is the first point of contact most patients have with health services and is where most cancer prevention and early detection occur. Inadequate follow-up of abnormal test results for cervical abnormalities in primary care can lead to suboptimal patient outcomes including higher mortality and decreased quality of life. AIMS: To explore the magnitude of and factors associated with, inadequate follow-up of test results for cervical abnormalities in primary and ambulatory care. METHODS: MEDLINE, Embase, Cochrane Library and CINAHL were searched for peer-reviewed literature from 2000-2022, excluding case-studies, grey literature, and systematic reviews. Studies were included if they reported on patients aged ≥ 18 years with no previous cancer diagnosis, in a primary care/ambulatory setting. Risk of bias was assessed using the Joanna Briggs Institute Critical appraisal checklists, appropriate to the study design. A segregated methodology was used to perform a narrative synthesis, maintaining the distinction between quantitative and qualitative research. RESULTS: We included 27 publications reporting on 26 studies in our review; all were conducted in high-income countries. They included 265,041 participants from a variety of ambulatory settings such as family medicine, primary care, women's services, and colposcopy clinics. Rates of inadequate follow-up ranged from 4 to 75%. Studies reported 41 different factors associated with inadequate follow-up. Personal factors associated with inadequate follow-up included younger age, lower education, and socioeconomic status. Psychological factors were reported by only 3/26 studies and 2/3 found no significant association. System protective factors included the presence of a regular primary care provider and direct notification of abnormal test results. DISCUSSION: This review describes inadequate follow-up of abnormal cervical abnormalities in primary care. Prevalence varied and the evidence about causal factors is unclear. Most interventions evaluated were effective in decreasing inadequate follow-up. Examples of effective interventions were appointment reminders via telephone, direct notification of laboratory results, and HPV self-sampling. Even though rates of cervical cancer have decreased over the years, there is a lack of information on factors affecting follow-up in primary care and ambulatory settings, particularly in low and middle-income countries. This information is crucial if we are to achieve WHO's interim targets by 2030, and hope to avert 62 million cervical cancer deaths by 2120. TRIAL REGISTRATION: PROSPERO ID CRD42021250136.

Improving the patient-reported outcome sections of clinical trial protocols: a mixed methods evaluation of educational workshops.

INTRODUCTION: Failure to incorporate key patient-reported outcome (PRO) content in trial protocols affects the quality and interpretability of the collected data, contributing to research waste. Our group developed evidence-based training specifically addressing PRO components of protocols. We aimed to assess whether 2-day educational workshops improved the PRO completeness of protocols against consensus-based minimum standards provided in the SPIRIT-PRO Extension in 2018. METHOD: Annual workshops were conducted 2011-2017. Participants were investigators/trialists from cancer clinical trials groups. Although developed before 2018, workshops covered 15/16 SPIRIT-PRO items. Participant feedback immediately post-workshop and, retrospectively, in November 2017 was summarised descriptively. Protocols were evaluated against SPIRIT-PRO by two independent raters for workshop protocols (developed post-workshop by participants) and control protocols (contemporaneous non-workshop protocols). SPIRIT-PRO items were assessed for completeness (0 = not addressed, 10 = fully addressed). Mann-Whitney U tests assessed whether workshop protocols scored higher than controls by item and overall. RESULTS: Participants (n = 107) evaluated the workshop positively. In 2017, 16/41 survey responders (39%) reported never applying in practice; barriers included role restrictions (14/41, 34%) and lack of time (5/41, 12%). SPIRIT-PRO overall scores did not differ between workshop (n = 13, median = 3.81/10, interquartile range = 3.24) and control protocols (n = 9, 3.51/10 (2.14)), (p = 0.35). Workshop protocols scored higher than controls on two items: 'specify PRO concepts/domains' (p = 0.05); 'methods for handling missing data' (p = 0.044). CONCLUSION: Although participants were highly satisfied with these workshops, the completeness of PRO protocol content generally did not improve. Additional knowledge translation efforts are needed to assist protocol writers address SPIRIT-PRO guidance and avoid research waste that may eventuate from sub-optimal PRO protocol content.

Long-term consumer involvement in cancer research: Working towards partnership.

BACKGROUND: Meaningful consumer involvement in health research is important. There are limited data on how to maintain long-term consumer involvement. OBJECTIVE: To identify barriers and facilitators to meaningful long-term consumer involvement in research. DESIGN: Six semi-structured interviews were conducted with members of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group (CAG) and included the review of 40 supporting documents. Interviews and documents were analysed using inductive thematic analysis; the themes were mapped onto the domains of Cancer Australia's National Framework for Consumer Involvement in Cancer Control. RESULTS: Equality, respect and feeling valued were facilitators to long-term involvement. These elements were part of an overarching theme of organizational commitment. Creating balance, managing competing deadlines and integrating a consumer role with a personal life were key barriers to involvement. These themes mapped strongly to the National Framework for Consumer Involvement in Cancer Control domains of committed organizations, capable consumers, inclusive groups and shared focus. CONCLUSION: Research networks should reflect on several factors to maintain long-term consumer involvement. Networks should aim to build a meaningful relationship, using clear communication and education, that reinforces the value and scope of a consumers contributions. We found that consumer education needs do not diminish over time and adequate skill development, support and feedback need to be on-going. Creating regular opportunities for feedback and reflection are important to continue to meet best practice guidelines.

General practitioners' management of cancers in Australian adolescents and young adults.

General practitioners (GPs) are often the first point of contact adolescents and young adults (AYAs, aged 10-29) with cancer have with the health system, and they are well-placed to coordinate their complex medical and psychosocial care. This study is the first to report characteristics of patients, GPs and cancers involved in AYA cancer management consultations in Australia, using data from a nationally representative sample of 972,100 patient-GP encounters in 2006-2016. AYA cancers were managed in 212 encounters, equating to approximately 137 per 100,000 AYA consultations. This rate was higher in older AYAs (25-29 years) and those who held a concession card. Approximately 30% of cancers managed were classified as "new", with GPs primarily providing counselling, education, and referrals to specialist care, imaging and pathology. This suggests that GPs are involved in the ongoing care of AYAs with cancer from diagnosis, in conjunction with other healthcare professionals. This is an encouraging indication of the potential for integrated multidisciplinary care extending from active treatment into survivorship; however, further work is needed to explore the changing role of GPs across the cancer trajectory.

Perceptions of primary care patients on the use of electronic clinical decision support tools to facilitate health care: A systematic review.

OBJECTIVE: Electronic clinical decision support tools (eCDSTs) are interventions designed to facilitate clinical decision-making using targeted medical knowledge and patient information. While eCDSTs have been demonstrated to improve quality of care, there is a paucity of research relating to the acceptability of eCDSTs in primary care from the patients' perspective. This study aims to summarize current evidence relating to primary care patients' perceptions and experiences on the use of eCDSTs by their clinician to provide care. METHODS: Four databases (Medline, Embase, CINAHL and Cochrane Library) were searched for qualitative and quantitative studies with outcomes relating to patients' perceptions of the use of clinician-facing or shared-eCDSTs. Data extraction and critical appraisal using the Johanna Briggs Institute Critical Appraisal checklists were carried out independently by reviewers. Qualitative and quantitative outcomes were synthesized independently. We used Richardson et al. 'Patient Evaluation of Artificial Intelligence (AI) in Healthcare' framework for qualitative analysis. FINDINGS: 20 papers were included for synthesis. eCDSTs were generally well-regarded by patients. The key facilitators for use were promoting informed decision-making, prompting discussions, aiding clinical decision-making, and enabling information sharing. Key barriers for use were lack of holistic care, 'medicalized' language, and confidentiality concerns. CONCLUSION: Our study identified important aspects to consider in the development of future eCDSTs. Patients were generally positive regarding the use of eCDSTs; however, patient's perspectives should be included from the conception of new eCDSTs to ensure recommendations align with the needs of patients and clinicians. PRACTICE IMPLICATIONS: The study results contribute to ensuring the acceptability of eCDSTs for patients and their unique needs. Encouragement is given for future development to adopt and build upon these findings. Additional research focusing on patients' perceptions of using eCDSTs for specific health conditions is deemed necessary.

Optimising a clinical decision support tool to improve chronic kidney disease management in general practice.

BACKGROUND: Early identification and treatment of chronic disease is associated with better clinical outcomes, lower costs, and reduced hospitalisation. Primary care is ideally placed to identify patients at risk of, or in the early stages of, chronic disease and to implement prevention and early intervention measures. This paper evaluates the implementation of a technological intervention called Future Health Today that integrates with general practice EMRs to (1) identify patients at-risk of, or with undiagnosed or untreated, chronic kidney disease (CKD), and (2) provide guideline concordant recommendations for patient care. The evaluation aimed to identify the barriers and facilitators to successful implementation. METHODS: Future Health Today was implemented in 12 general practices in Victoria, Australia. Fifty-two interviews with 30 practice staff were undertaken between July 2020 and April 2021. Practice characteristics were collected directly from practices via survey. Data were analysed using inductive and deductive qualitative analysis strategies, using Clinical Performance - Feedback Intervention Theory (CP-FIT) for theoretical guidance. RESULTS: Future Health Today was acceptable, user friendly and useful to general practice staff, and supported clinical performance improvement in the identification and management of chronic kidney disease. CP-FIT variables supporting use of FHT included the simplicity of design and delivery of actionable feedback via FHT, good fit within existing workflow, strong engagement with practices and positive attitudes toward FHT. Context variables provided the main barriers to use and were largely situated in the external context of practices (including pressures arising from the COVID-19 pandemic) and technical glitches impacting installation and early use. Participants primarily utilised the point of care prompt rather than the patient management dashboard due to its continued presence, and immediacy and relevance of the recommendations on the prompt, suggesting mechanisms of compatibility, complexity, actionability and credibility influenced use. Most practices continued using FHT after the evaluation phase was complete. CONCLUSIONS: This study demonstrates that FHT is a useful and acceptable software platform that provides direct support to general practice in identifying and managing patients with CKD. Further research is underway to explore the effectiveness of FHT, and to expand the conditions on the platform.

General practice-based cancer research publications: a bibliometric analysis 2013-2019.

BACKGROUND: General practice plays a critical role in the prevention, diagnosis, management, and survivorship care of patients with cancer. Mapping research outputs over time provides valuable insights into the evolving role of general practice in cancer care. AIM: To describe and compare the distribution of cancer in general practice research publications by country, cancer type, area of the cancer continuum, author sex, and journal impact factor. DESIGN AND SETTING: A bibliometric analysis using a systematic approach to identify publications. METHOD: MEDLINE and Embase databases were searched for studies published between 2013 and 2019, which reported on cancer in general practice. Included studies were mapped to the cancer continuum framework. Descriptive statistics were used to present data from the included studies. RESULTS: A total of 2798 publications were included from 714 journals, spanning 79 countries. The publication rate remained stable over this period. Overall, the US produced the most publications (n = 886, 31.7%), although, per general population capita, Denmark produced nearly 10 times more publications than the US (20.0 publications per million compared with 2.7 publications per million). Research across the cancer continuum varied by country, but, overall, most studies focused on cancer screening, diagnosis, and survivorship. More than half of included studies used observational study designs (n = 1523, 54.4%). Females made up 66.5% (n = 1304) of first authors, but only 47.0% (n = 927) of last authors. CONCLUSION: Cancer in general practice is a stable field where research is predominantly observational. There is geographical variation in the focus of cancer in general practice research, which may reflect different priorities and levels of investment between countries. Overall, these results support future consideration of how to improve under-represented research areas and the design, conduct, and translation of interventional research.

A systematic review of smartphone applications for cancer survivors.

PURPOSE: Mobile phone applications are positioned to support, educate, and empower cancer survivors during post-treatment care. We undertook a review to assess the utility of such smartphone applications; determine whether their use correlates with improved quality of life and other self-reported outcomes; and understand the feasibility of integrating mobile apps into routine follow-up care. METHODS: MEDLINE, EMBASE, Emcare, and PsycINFO databases were searched for studies evaluating apps that addressed at least one of the five Cancer Survivorship Care Quality Framework (CSCQF) domains published up until December 2021. Studies were narratively synthesized. Implementation barriers and facilitators were mapped against the Technology Acceptance Model. RESULTS: Twenty-three primary studies were included in this review. Only three randomized controlled trials (RCTs) were identified. Studies generally found mobile apps to be feasible, acceptable, and well-placed to support survivorship care. Health promotion was the most predominant CSCQF domain with apps primarily aiming to support exercise and dietary changes. The domains of monitoring for cancer recurrence (n=5) and management of co-morbidities (n=1) were underrepresented. Barriers to app use included greater time since active treatment, lack of familiarity with technology, and content not tailored to the user. CONCLUSIONS: Mobile apps are both feasible and acceptable in supporting the transition between active treatment and follow-up care. However, understanding the utility of such apps is limited by the low number of RCTs. IMPLICATIONS FOR CANCER SURVIVORS: Mobile apps have the potential to be useful support tools for patients post-treatment. However, given the number of apps developed, targeted, and available to cancer survivors, practical guidance to help cancer survivors choose appropriate apps is needed.

Optimization of a Quality Improvement Tool for Cancer Diagnosis in Primary Care: Qualitative Study.

BACKGROUND: The most common route to a diagnosis of cancer is through primary care. Delays in diagnosing cancer occur when an opportunity to make a timely diagnosis is missed and is evidenced by patients visiting the general practitioner (GP) on multiple occasions before referral to a specialist. Tools that minimize prolonged diagnostic intervals and reduce missed opportunities to investigate patients for cancer are therefore a priority. OBJECTIVE: This study aims to explore the usefulness and feasibility of a novel quality improvement (QI) tool in which algorithms flag abnormal test results that may be indicative of undiagnosed cancer. This study allows for the optimization of the cancer recommendations before testing the efficacy in a randomized controlled trial. METHODS: GPs, practice nurses, practice managers, and consumers were recruited to participate in individual interviews or focus groups. Participants were purposively sampled as part of a pilot and feasibility study, in which primary care practices were receiving recommendations relating to the follow-up of abnormal test results for prostate-specific antigen, thrombocytosis, and iron-deficiency anemia. The Clinical Performance Feedback Intervention Theory (CP-FIT) was applied to the analysis using a thematic approach. RESULTS: A total of 17 interviews and 3 focus groups (n=18) were completed. Participant themes were mapped to CP-FIT across the constructs of context, recipient, and feedback variables. The key facilitators to use were alignment with workflow, recognized need, the perceived importance of the clinical topic, and the GPs' perception that the recommendations were within their control. Barriers to use included competing priorities, usability and complexity of the recommendations, and knowledge of the clinical topic. There was consistency between consumer and practitioner perspectives, reporting language concerns associated with the word cancer, the need for more patient-facing resources, and time constraints of the consultation to address patients' worries. CONCLUSIONS: There was a recognized need for the QI tool to support the diagnosis of cancer in primary care, but barriers were identified that hindered the usability and actionability of the recommendations in practice. In response, the tool has been refined and is currently being evaluated as part of a randomized controlled trial. Successful and effective implementation of this QI tool could support the detection of patients at risk of undiagnosed cancer in primary care and assist in preventing unnecessary delays.

Interventions for head and neck cancer survivors: Systematic review.

BACKGROUND: Interventions for head/neck cancer (HNC) survivors may not address their cancer-related and general health needs. METHODS: Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guided this systematic review of studies from 2000 to 2021 of interventions targeting cancer survivors treated with curative-intent, using MEDLINE, Embase, Emcare, and PsycINFO. Interventions were categorized into domains of the Quality of Cancer Survivorship Care Framework to characterize the scope and quality of interventions. RESULTS: We identified 28 studies for inclusion: 13 randomized and 15 non-randomized. Most targeted surveillance/management of physical effects (n = 24) including 13 that also targeted psychosocial effects. Four studies addressed prevention/surveillance for recurrence/new cancers, one addressed health promotion/disease prevention, and one addressed chronic medical conditions. Most studies (n = 27) had medium-high risk of bias. CONCLUSIONS: There are few high-quality studies addressing HNC survivorship. Future rigorously designed studies should address broader areas of care, including chronic disease management and health promotion/disease prevention.

Look who's talking now: Cancer in primary care on Twitter. An observational study.

BACKGROUND: Twitter is a microblogging platform that helps share information. It is a dynamic tool that has been embraced by many user types including consumers and healthcare professionals (HCPs). Currently, there are no data on how cancer in primary care features on Twitter. AIM: To explore the type of users and information shared about cancer in primary care on Twitter. DESIGN & SETTING: A descriptive exploratory study took place of publicly available Twitter data. METHOD: Tweets were searched between July 2015 and June 2017 for 'GP', 'general practice', 'primary care', or 'general practitioner' in conjunction with 'cancer'. A 20% random sample was coded for geographic location, user type, type of tweet, and theme. Tweet sentiment was analysed using R package sentimentr. Content that gained traction was compared by combining original tweets, retweets, favourites, and duration. RESULTS: There were a total of 3413 tweets from 1611 users in 44 countries. Consumers were the largest user group followed by health organisations, healthcare professionals, and the media. The most common theme across user types was diagnostic delay. Other themes that emerged included cancer screening, symptom awareness, and early diagnosis. Consumers published more negative tweets, particularly in relation to diagnostic delay. Health organisations focused on symptom awareness and screening. Over half of media tweets were stories that featured delayed diagnosis or screening. CONCLUSION: A broad range of users engage with Twitter to share information about cancer in primary care. Content is different between user groups, but diagnostic delay and symptom awareness are common themes. Healthcare and professional organisations may need to consider approaches to counter negative messages about diagnostic delay.

Decision support tools to improve cancer diagnostic decision making in primary care: a systematic review.

BACKGROUND: The diagnosis of cancer in primary care is complex and challenging. Electronic clinical decision support tools (eCDSTs) have been proposed as an approach to improve GP decision making, but no systematic review has examined their role in cancer diagnosis. AIM: To investigate whether eCDSTs improve diagnostic decision making for cancer in primary care and to determine which elements influence successful implementation. DESIGN AND SETTING: A systematic review of relevant studies conducted worldwide and published in English between 1 January 1998 and 31 December 2018. METHOD: Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. MEDLINE, EMBASE, and the Cochrane Central Register of Controlled Trials were searched, and a consultation of reference lists and citation tracking was carried out. Exclusion criteria included the absence of eCDSTs used in asymptomatic populations, and studies that did not involve support delivered to the GP. The most relevant Joanna Briggs Institute Critical Appraisal Checklists were applied according to study design of the included paper. RESULTS: Of the nine studies included, three showed improvements in decision making for cancer diagnosis, three demonstrated positive effects on secondary clinical or health service outcomes such as prescribing, quality of referrals, or cost-effectiveness, and one study found a reduction in time to cancer diagnosis. Barriers to implementation included trust, the compatibility of eCDST recommendations with the GP's role as a gatekeeper, and impact on workflow. CONCLUSION: eCDSTs have the capacity to improve decision making for a cancer diagnosis, but the optimal mode of delivery remains unclear. Although such tools could assist GPs in the future, further well-designed trials of all eCDSTs are needed to determine their cost-effectiveness and the most appropriate implementation methods.