Effectiveness of a guided online primary care intervention for fear of cancer recurrence: A randomised controlled trial.

OBJECTIVE: Fear of Cancer Recurrence (FCR) is highly prevalent among cancer survivors and leads to decreased quality of life and increased healthcare costs. We assessed the effectiveness of a guided online primary care intervention for FCR, compared to waiting list. METHODS: In this RCT, participants were recruited online and randomised 1:1. All adults who finished successful curative cancer treatment between 3 months and 10 years ago, wanted support for FCR, and had sufficient Dutch skills were eligible. The intervention consisted of a 10-week online programme and three to five video calling sessions with a trained mental health worker. After 6 months, the control group received the same intervention. The primary outcome was the difference between the groups in the change in FCR severity from baseline (T0) to 6 months (T2), measured online with the short form of the Fear of Cancer Recurrence Inventory. RESULTS: One hundred and seventy-three participants were enroled and randomised to the intervention (n = 86) or control group (n = 87). FCR severity dropped 2.1 points more in the intervention group than in the control group (2.7 points (SD = 3.9) versus 0.6 points (SD = 3.6), t(154) = 3.4, p = 0.0007). General mental well-being also improved significantly in the intervention group and remained stable in the control group. These improvements remained at 10 months follow up. CONCLUSIONS: This easily accessible and relatively inexpensive intervention effectively reduces FCR and has potential to replace or precede existing more intensive psychological treatments, improving patients' access to care. TRIAL REGISTRATION: The trial was prospectively registered in the Netherlands Trial Register on 25-02-2019 with number NL7573.

Patient perspectives on telemedicine during the COVID-19 pandemic: a mixed-methods community-based study.

BACKGROUND: Detailed community-based perspectives on patient experiences with telemedicine are currently lacking, yet essential to assess clinical applicability of telemedicine during and beyond pandemics, alike COVID-19. The aim of this study was to expose patient perspectives on virtual compared to in-person consultations, including determinants of these preferences. METHODS: We invited 5864 participants of the population-based Rotterdam Study to fill in a validated questionnaire using both close-ended and free-text questions. The questionnaire was sent on 30 July 2020, following a period of lockdowns and closures of non-essential workplaces. It assessed preferences for physician contact, healthcare utilisation, socioeconomic factors, and overall health. Those who experienced at least one virtual consultation (telephone or video call) between March 2020 and the beginning of July 2020 were asked whether those consultations were more, equally or less pleasant than in-person consultations, and to detail their experiences through free-text comments. These narrative data were examined using thematic analysis. RESULTS: 4514 participants completed the questionnaire (response rate 77.0%, 58.7% women, mean age 70.8 ± 10.5 years). 1103 participants (24.4%) reported having had experience with virtual consultations. Half of these participants considered virtual consultations less pleasant than in-person consultations (N = 556; 50.4%), while 11.5% found it more pleasant. In total, we coded free-text comments of 752 participants. Prominent themes behind patient preferences for virtual or in-person consultations were lack of nonverbal communication, lack of physical examination, consultation scheduling, personal circumstances, and the presence of somatic and/or language barriers. CONCLUSIONS: Based on the experiences of a large elderly patient population, we showed that preference for virtual or in-person consultations is dependent on personal and situational variety, and their interplay. Healthcare providers should consider patients' complex care needs and evaluate the potential added value of nonverbal communication and physical examination before scheduling a virtual consultation.

What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis.

OBJECTIVE: Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI-SF). We also report on associations between FCR and clinical and demographic characteristics. METHODS: This is a systematic review and individual participant data (IPD) meta-analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI-SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool. RESULTS: IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI-SF (range 0-36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis. CONCLUSIONS: FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR. The protocol was prospectively registered (PROSPERO CRD42020142185).

Long-COVID and long-term cancer survivorship-Shared lessons and opportunities.

As of 2022, close to 90 million persons in the United States, 243 million persons in Europe and 585 million worldwide have been infected with the novel SARS-CoV-2 (COVID-19) virus and survived. Estimates vary but suggest that up to 50% may experience long-term sequelae, termed 'Long-COVID'. While Long-COVID is a new condition, the phenomenon of disabling long-term effects following an illness requiring ongoing surveillance and management is not. In this commentary, we discuss how Long-COVID parallels the experiences of long-term cancer survivors, highlight shared challenges and offer opportunities to improve research and clinical care for both growing populations of patients as well as other long-term chronic, disabling conditions.

Shared decision making in cancer treatment: A Dutch national survey on patients' preferences and perceptions.

OBJECTIVE: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients. METHODS: An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018. RESULTS: Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis. Mean age was 62.1 ± 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10-IQR 8-10). Its occurrence was perceived by 28% (N = 899), and short- and long-term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short- and long-term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed. CONCLUSION: In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making.

Patients' preferred and perceived level of involvement in decision making for cancer treatment: A systematic review.

OBJECTIVE: Patient involvement in decision making is conditional for personalised treatment decisions. We aim to provide an up-to-date overview of patients' preferred and perceived level of involvement in decision making for cancer treatment. METHODS: A systematic search was performed in PubMed, EMBASE, PsycINFO and CINAHL for articles published between January 2009 and January 2020. Search terms were 'decision making', 'patient participation', 'oncology', 'perception' and 'treatment'. Inclusion criteria were: written in English, peer-reviewed, reporting patients' preferred and perceived level of involvement, including adult cancer patients and concerning decision making for cancer treatment. The percentages of patients preferring and perceiving an active, shared or passive decision role and the (dis)concordance are presented. Quality assessment was performed with a modified version of the New-Castle Ottawa Scale. RESULTS: 31 studies were included. The median percentage of patients preferring an active, shared or passive role in decision making was respectively 25%, 46%, and 27%. The median percentage of patients perceiving an active, shared or passive role was respectively 27%, 39%, and 34%. The median concordance in preferred and perceived role of all studies was 70%. Disconcordance was highest for a shared role; 42%. CONCLUSIONS: Patients' preferences for involvement in cancer treatment decision vary widely. A significant number of patients perceived a decisional role other than preferred. Improvements in patient involvement have been observed in the last decade. However, there is still room for improvement and physicians should explore patients' preferences for involvement in decision making in order to truly deliver personalised cancer care.

Effects of a time out consultation with the general practitioner on cancer treatment decision-making: a randomised controlled trial: Time out with the general practitioner and cancer treatment decision.

OBJECTIVE: Improving shared decision-making (SDM) enables more tailored cancer treatment decisions. We evaluated a Time Out consultation (TOC) with the general practitioner (GP), between cancer diagnosis and treatment decision, which aims at supporting SDM and improving continuity of primary care. This study aims to evaluate the effects of a TOC on perceived SDM, information provision and self-efficacy. METHODS: This randomised controlled trial included newly diagnosed patients with curable cancer (breast, lung, colorectal, gynaecologic and melanoma) from four Dutch hospitals. Primary outcome is perceived SDM and secondary outcomes are information provision and self-efficacy. RESULTS: One hundred fifty-four patients (control n = 77, intervention n = 77) - female: 75%, mean age: 61 (SD ± 11.9). In the intervention group, 80.5% (n = 62) had a TOC, of which 82.3% (n = 51) took place after treatment decision. Perceived SDM was lower in the intervention group (-8.9 [95% CI: 0.6-17.1]). Among those with a TOC before treatment decision (n = 11), perceived SDM was comparable to the control group (66.5 ± 27.2 vs. 67.9 ± 26.1). CONCLUSION: Even though patients are motivated to have a TOC, implementing a TOC between diagnosis and treatment decision is challenging. Effects of a timely TOC could not be established. Non-timely TOC decreased perceived SDM. Planning of the TOC should be optimised, and future research should establish if adequately timed TOC results in improved SDM in cancer patients.

Cancer suspicion, referral to cancer patient pathway and primary care interval: a survey and register study exploring 10 different types of abdominal cancer.

BACKGROUND: Abdominal cancers represent 30% of all diagnosed cancers. Nevertheless, it is unknown if the general practitioner's (GP's) initial cancer suspicion varies for different abdominal cancer types and how this is associated with referrals to standardized cancer patient pathways (CPPs). OBJECTIVES: To explore initial cancer suspicion in GPs and to investigate how this was associated with GP referrals to CPPs and the duration of the primary care interval (PCI) in 10 different abdominal cancer types. METHODS: We conducted a cohort study on 1104 incident abdominal cancer patients diagnosed in Denmark in 2016 using a combination of survey and register-based data. Poisson regression was used to estimate associations between GP cancer suspicion, CPP referral and PCI duration. RESULTS: The GPs initially suspected cancer or other serious disease in 46-78% of cases, lowest in kidney cancer, and referred 35-65% to a CPP, lowest in oesophageal cancer. The GP's suspicion at the first presentation was strongly associated with referral to a CPP. The median (0-11 days) and 75th percentile (3-32 days) PCIs varied between the abdominal cancer types. The likelihood of a long PCI was more than 3-fold higher when the GP did not initially suspect cancer. CONCLUSION: In up to half of abdominal cancer patients, there is no initial suspicion of cancer or serious disease. CPPs were used in only one-third to two-thirds of patients, depending on cancer type. For kidney cancer, as well as several abdominal cancers, we need better diagnostic strategies to support GPs to enable effective and efficient referral.

This study investigates how often a suspicion of cancer is raised by the general practitioner (GP) at the first consultation leading up to a diagnosis for several abdominal cancer types. The study also explores how often the GPs refer these patients to a cancer patient pathway (CPP). Moreover, the length of the primary care interval is measured, that is, the interval from the first time when the patient presents with symptoms to their GP until referral to a hospital or another specialist. The results show that the GPs initially suspected cancer or other serious disease in 46­78% of 10 selected types of abdominal cancer; lowest suspicion was seen for kidney cancer, and referred 35­65% to a CPP; lowest CPP use was seen for oesophageal cancer. The median time from the first visit to the GP until referral to a hospital or another specialist was 0­11 days, depending on the cancer type. The most important factor for a prompt referral was the GP's initial cancer suspicion; this was seen independent of the diagnosed cancer type. These findings call for the development of new cancer pathways that better target the patients in whom the GP does not initially suspect cancer.

Treatment decision-making and the added value of the general practitioner: A qualitative exploration of cancer patients' perspectives.

OBJECTIVE: Cancer patients are increasingly involved in decision-making for cancer treatment. General practitioners' (GPs) support in this process is advocated. Therefore, GPs need to be aware of patients' treatment decision-making process and their potential role. We aim to understand the treatment decision-making process and to explore the added value of GP involvement, from the perspective of cancer patients treated with curative intent. METHODS: An explorative qualitative study was performed. Semi-structured interviews were conducted with 20 purposively sampled Dutch cancer patients treated with curative intent. RESULTS: Patients' treatment decision-making process was dominated by a focus on 'safeguarding survival'. Patients generally followed the treatment plan as proposed by their physician and did not always experience having a treatment choice. The majority of patients expressed added value for GP involvement, mainly to provide psychological support, but also for providing shared decision-making (SDM) support. CONCLUSION: The treatment decision-making process of cancer patients treated with curative intent is dominated by the urge to 'safeguard survival'. GPs should be aware of their added value in providing psychological support and their potential role to support SDM following a cancer diagnosis.

Potential for Reducing Time to Referral for Colorectal Cancer Patients in Primary Care.

PURPOSE: An optimal diagnostic process in primary care is pivotal for reducing cancer-related disease burden. This study aims to explore reasons for long times to referral for Dutch colorectal cancer (CRC) patients in primary care. METHODS: A retrospective cohort study of anonymized free-text primary care records from the Julius General Practitioners' Network database, linked to the Netherlands Cancer Registry. Patients with a confirmed CRC diagnosis from 2007 through 2011 that symptomatically presented in primary care were included. Median time and interquartile ranges from presentation in primary care to referral were calculated for multiple patient and presentation characteristics. Associations of these characteristics with long time to referral (75th percentile was ≥59 days) were examined with log-binomial regression analyses. Routes to referral of patients with the longest times to referral were explored using thematic free-text analyses (90th percentile at ≥219 days). RESULTS: Among the 309 people with CRC, patients who were female, did not have a registered family history, had a history of malignancy, lacked alarm symptoms at presentation, or had hemorrhoids at physical examination were at risk for longer time to referral in univariable analyses (longer median durations and/or univariable association with the 75th percentile). Only presentation without alarm symptoms showed a statistically significant association with long duration (75th percentile) in multivariable analysis (relative risk = 1.7; 95% CI, 1.1-2.6). Thematic exploration of the diagnostic routes to referral of patients with the longest durations (90th percentile) showed 2 dominating themes: "alternative working diagnosis" and "suboptimal diagnostic strategies," and included the sub-themes "omitting to reconsider an initial diagnosis" and "lacking follow-up." CONCLUSIONS: Long time to referral for CRC in primary care is mainly related to low cancer suspicion. There is potential for reducing the longest times to referral for patients with CRC in primary care, with earlier reconsideration of the initial hypothesis and implementation of strict follow-up consultations.

Routine primary care data for scientific research, quality of care programs and educational purposes: the Julius General Practitioners' Network (JGPN).

BACKGROUND: General Practitioners (GPs) in the Netherlands routinely register all patient contacts electronically. These records include longitudinally gathered clinical information of the patient contacts in coded data and free text. METHODS: Diagnoses are coded according to the International Coding of Primary Care (ICPC). Drug prescriptions are labelled with the Anatomical Therapeutic Chemical Classification (ATC), and letters of hospital specialists and paramedic health care professionals are linked or directly incorporated in the electronic medical files. A network of a large group of GPs collecting routine care data on an ongoing basis can be used for answering various research questions. RESULTS: The Julius General Practitioners' Network (JGPN) database consists of routine care data from over ten years of a dynamic cohort of around 370,000 individuals registered with the participating GPs from the city of Utrecht and its vicinity. Health care data are extracted anonymously every quartile of a year and these data are used by researchers. CONCLUSION: We describe the content and usability of our JGPN database, and how a wide variety of research questions could be answered, as illustrated with examples of published articles.

Outcomes of hepatitis C screening programs targeted at risk groups hidden in the general population: a systematic review.

BACKGROUND: Effective screening programs are urgently needed to provide undiagnosed hepatitis C virus (HCV)-infected individuals with therapy. This systematic review of characteristics and outcomes of screening programs for HCV focuses on strategies to identify HCV risk groups hidden in the general population. METHODS: We conducted a comprehensive search of MEDLINE and EMBASE databases for articles published between 1991-2010, including studies that screened the general population using either a newly developed (nonintegrated) screening program or one integrated in existing health care facilities. Look-back studies, prevalence studies, and programs targeting high-risk groups in care (e.g., current drug users) were excluded. RESULTS: After reviewing 7052 studies, we identified 67 screening programs: 24 nonintegrated; 41 programs integrated in a variety of health care facilities (e.g., general practitioner); and 2 programs with both integrated and nonintegrated strategies. Together, these programs identified approximately 25,700 HCV-infected individuals. In general, higher HCV prevalence was found in programs in countries with intermediate to high HCV prevalence, in psychiatric clinics, and in programs that used a prescreening selection based on HCV risk factors. Only 6 programs used a comparison group for evaluation purposes, and 1 program used theory about effective promotion for screening. Comparison of the programs and their effectiveness was hampered by lack of reported data on program characteristics, clinical follow-up, and type of diagnostic test. CONCLUSIONS: A prescreening selection based on risk factors can increase the efficiency of screening in low-prevalence populations, and we need programs with comparison groups to evaluate effectiveness. Also, program characteristics such as type of diagnostic test, screening uptake, and clinical outcomes should be reported systematically.

A blended learning for general practitioners and nurses on skills to support shared decision-making with patients about palliative cancer treatment: A one-group pre-posttest study.

OBJECTIVE: To evaluate a newly developed blended learning programme for general practitioners (GPs) and nurses in supporting shared decision making (SDM) about palliative cancer treatment in a simulated setting. METHODS: In a pre-posttest study, healthcare professionals (HCPs) participated in the blended learning (i.e. e-learning and (online) training session). HCPs filled out surveys (T0 (baseline), T1 (after e-learning) and T2 (after full blended learning)) and engaged in simulated consultations at T0 and T2. The primary outcome was observed SDM support (Triple-S; DSAT-10 for validation). Secondary outcomes included satisfaction, knowledge about and attitude towards SDM support. Repeated measures General Linear Models were conducted. RESULTS: 33 HCPs (17 GPs and 16 nurses) participated. SDM support significantly improved after training (Triple-S; medium effect). Observers' overall rating of SDM support (medium effect) as well as HCPs' knowledge (large effect) and beliefs about their capabilities (medium effect) improved after training. There was no difference in decision support skills (DSAT-10), HCPs' other clinical behavioural intentions and satisfaction. HCPs evaluated the training positively. CONCLUSION: Blended learning for HCPs on supporting SDM in palliative cancer care improved their skills, knowledge and confidence in simulated consultations. PRACTICE IMPLICATIONS: These first findings are promising for evaluating interprofessional SDM in clinical practice.

Impact of the COVID-19 Outbreak-Delayed Referral of Colorectal and Lung Cancer in Primary Care: A National Retrospective Cohort Study.

The Coronavirus disease 2019 (COVID-19) outbreak impacted health care. We investigated its impact on the time to referral and diagnosis for symptomatic cancer patients in The Netherlands. We performed a national retrospective cohort study utilizing primary care records linked to The Netherlands Cancer Registry. For patients with symptomatic colorectal, lung, breast, or melanoma cancer, we manually explored free and coded texts to determine the durations of the primary care (IPC) and secondary care (ISC) diagnostic intervals during the first COVID-19 wave and pre-COVID-19. We found that the median IPC duration increased for colorectal cancer from 5 days (Interquartile Range (IQR) 1-29 days) pre-COVID-19 to 44 days (IQR 6-230, p < 0.01) during the first COVID-19 wave, and for lung cancer, the duration increased from 15 days (IQR) 3-47) to 41 days (IQR 7-102, p < 0.01). For breast cancer and melanoma, the change in IPC duration was negligible. The median ISC duration only increased for breast cancer, from 3 (IQR 2-7) to 6 days (IQR 3-9, p < 0.01). For colorectal cancer, lung cancer, and melanoma, the median ISC durations were 17.5 (IQR (9-52), 18 (IQR 7-40), and 9 (IQR 3-44) days, respectively, similar to pre-COVID-19 results. In conclusion, for colorectal and lung cancer, the time to primary care referral was substantially prolonged during the first COVID-19 wave. In such crises, targeted primary care support is needed to maintain effective cancer diagnosis.

Impact of the COVID-19 pandemic on breast cancer incidence and tumor stage in the Netherlands and Norway: A population-based study.

BACKGROUND: Comparing the impact of the COVID-19 pandemic on the incidence of newly diagnosed breast tumors and their tumor stage between the Netherlands and Norway will help us understand the effect of differences in governmental and social reactions towards the pandemic. METHODS: Women newly diagnosed with breast cancer in 2017-2021 were selected from the Netherlands Cancer Registry and the Cancer Registry of Norway. The crude breast cancer incidence rate (tumors per 100,000 women) during the first (March-September 2020), second (October 2020-April 2021), and Delta COVID-19 wave (May-December 2021) was compared with the incidence rate in the corresponding periods in 2017, 2018, and 2019. Incidence rates were stratified by age group, method of detection, and clinical tumor stage. RESULTS: During the first wave breast cancer incidence declined to a larger extent in the Netherlands than in Norway (27.7% vs. 17.2% decrease, respectively). In both countries, incidence decreased in women eligible for screening. In the Netherlands, incidence also decreased in women not eligible for screening. During the second wave an increase in the incidence of stage IV tumors in women aged 50-69 years was seen in the Netherlands. During the Delta wave an increase in overall incidence and incidence of stage I tumors was seen in Norway. CONCLUSION: Alterations in breast cancer incidence and tumor stage seem related to a combined effect of the suspension of the screening program, health care avoidance due to the severity of the pandemic, and other unknown factors.

Patient-reported needs for coping with worry or fear about cancer recurrence and the extent to which they are being met: a survey study.

PURPOSE: Many cancer patients and survivors experience fear or worry about cancer recurrence (FCR). Evidence suggests support for FCR is their largest unmet need. We aimed to assess which types of support are needed, which providers are preferred and to what extent patients' needs are being met. METHODS: Together with the Dutch Federation of Cancer Patient Organisations (NFK), a purpose-designed questionnaire was distributed online via e-mail, newsletters and social media. All questions were multiple choice or Likert scales, except for an open-ended question about the preferred provider of care. RESULTS: Out of 5323 respondents, 4511 had experienced FCR and were included. Among them, 94% indicated a need for support. The required types of support that were reported the most were talking about FCR (69%), enjoyable activities for distraction (56%) and psychological help or coaching (40%). On average, younger respondents and women wanted more support than older respondents and men. Eighty-five percent of respondents received at least one type of support they wanted. Practical tips about FCR and additional medical check-ups were most often missed. Social contacts provided an important part of support, especially with talking and distracting activities. For other types of support, respondents usually preferred professionals. CONCLUSIONS: Almost all patients who experience FCR have a need for support. Even though most receive some support, several gaps remain. IMPLICATIONS FOR CANCER SURVIVORS: Many report an unmet need for psychological help or practical tips about FCR. We recommend for healthcare providers to discuss FCR with patients and inform them about the support available.

Cancer detection during the COVID-19 pandemic-Experiences in primary care and recommendations for the future.

Background: To describe general practitioners (GPs) experiences with the impact COVID-19 on the duration of cancer detection. Methods: Cross-sectional survey study among Dutch GPs. Results: Fifty-eight GPs participated. During the first wave, COVID-19-related delays were experienced by 88%, 52%, and 67% of GPs in the contact-seeking, primary care, and referral phases, respectively. GPs reported delays due to telehealth consultations, longer waiting times and patient's concerns of COVID infections and overburdening GPs. Conclusions: The majority of GPs experienced delays in cancer diagnostic processes during the beginning of the COVID pandemic, which was most prominent in the timeliness in which patients sought GP care.

The Impact of the COVID Pandemic on the Incidence of Presentations with Cancer-Related Symptoms in Primary Care.

Introduction: In the Netherlands, the onset of the coronavirus pandemic saw shifts in primary health service provision away from physical consultations, cancer-screening programs were temporarily halted, and government messaging focused on remaining at home. In March and April 2020, weekly cancer diagnoses decreased to 73% of their pre-COVID levels, and 39% for skin cancer. This study aims to explore the effect of the COVID pandemic on patient presentations for cancer-related symptoms in primary care in The Netherlands. Methods: Retrospective cohort study using routine clinical primary care data. Monthly incidences of patient presentations for cancer-related symptoms in five clinical databases in The Netherlands were analysed from March 2018 to February 2021. Results: Data demonstrated reductions in the incidence of cancer-related symptom presentations to primary care during the first COVID wave (March-June 2020) of -34% (95% CI: -43 to -23%) for all symptoms combined. In the second wave (October 2020-February 2021) there was no change in incidence observed (-8%, 95% CI -20% to 6%). Alarm-symptoms demonstrated decreases in incidence in the first wave with subsequent incidences that continued to rise in the second wave, such as: first wave: breast lump -17% (95% CI: -27 to -6%) and haematuria -15% (95% CI -24% to -6%); and second wave: rectal bleeding +14% (95% CI: 0 to 30%) and breast lump +14% (95% CI: 2 to 27%). Presentations of common non-alarm symptom such as tiredness and naevus demonstrated decreased in-cidences in the first wave of 45% (95% CI: -55% to -33%) and 37% (95% CI -47% to -25%). In the second wave, tiredness incidence was reduced by 20% (95% CI: -33% to -3%). Subgroup analy-sis did not demonstrate difference in incidence according to sex, age groups, comorbidity status, or previous history of cancer. Conclusions: These data describe large-scale primary care avoidance that did not increase until the end of the first COVID year for many cancer-related symptoms, suggestive that substantial numbers of patients delayed presenting to primary care. For those patients who had underlying cancer, this may have had impacted the cancer stage at diagnosis, treatment, and mortality.

Developing a regional transmural care database: A roadmap.

INTRODUCTION: In primary care health care systems, primary care physicians (PCPs) provide most basic care services, and if necessary, refer to secondary care for specialized work-up and treatment. If hospital care is required, agreement between PCPs and secondary care physicians (SCPs) on the conditions for patient referral and back-referral are considered crucial to providing high quality patient care. The regional healthcare network of Utrecht, a region in the Netherlands, developed a set of collaborative patient care agreements (CPCAs) for specific chronic conditions. Even though these CPCA are endorsed by all relevant regional health care organisations, the adoption of these agreements in practice remains substandard. In this project, through linkage of routine care data, as registered in daily practice by PCPs and SCPs, a regional transmural care database (RTD) was developed for monitoring the use of the CPCAs. Its data was transformed into' mirror data' used to support PCPs and SCPs in discussing and improving current practice and to support a learning healthcare system within the region. METHODS: The development of the RTD is part of a larger action research project on joint care, called ZOUT (an acronym which is translated as "The right care at the right place in the Utrecht region"). The RTD includes data from three regional hospitals, and about 70 affiliated primary care practices which are united in the Julius General Practitioners Network (JGPN). These data were extracted, linked and presented in the form of mirror data, following simple methods to allow replication of our approach. CPCAs addressing transmural care for three chronic conditions were selected. Data from the primary care practices and the hospitals were linked by an independent trusted third party. This enabled relevant hospital data to be added to the primary care dataset, thereby providing transmural routine care data for individual patients. RESULTS: During the development of the RTD, a roadmap was created including a detailed step-by-step checklist of the organizational, administrative, technical and legal arrangements which needed to be made. Legal and administrative challenges proved most challenging. Also, incompleteness of data and the impossibility to translate several agreements into extractable data limited the potential for providing a comprehensive overview of the extent to which agreements in the CPCA were adhered to in daily care. DISCUSSION: We present a systematic, comprehensive (technical as well as practical) and reproducible roadmap to developing a regional transmural care database suitable for generating mirror data on joint transmural care between PCPs and SCPs. This approach includes all technical steps in data selection and linkage, as well as the substantive steps that need to be taken in the analysis and application of the results. The mirror data, which reflects the follow-up of agreements formulated in the CPCAs, enabled shared reflection and discussion between PCPs and SCPs. This supports the search for bottlenecks and potentialities for improving daily collaborative care, thereby showing great potential to serve a learning regional healthcare system.