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Objective Patient involvement in decision making is conditional for personalized 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 Thirty-one 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 personalized cancer care. This article is protected by copyright. All rights reserved.

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.

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.

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.

BackgroundShared decision making (SDM) is considered important to realise personalised cancer care. Increased GP involvement after a diagnosis is advocated to improve SDM.AimTo explore whether patients with cancer are in need of GP involvement in cancer care in general and in SDM, and whether GP involvement occurs.Design & settingAn online national survey was distributed by the Dutch Federation of Cancer Patient Organisations (NFK) in May 2019.MethodThe survey was sent to (former) patients with cancer. Topics included GP involvement in cancer care in general and in SDM. Descriptive statistics and quotes were used.ResultsAmong 4763 (former) patients with cancer, 59% (n = 2804) expressed a need for GP involvement in cancer care. Of these patients, 79% (n = 2193) experienced GP involvement. Regarding GP involvement in SDM, 82% of patients (n = 3724) expressed that the GP should 'listen to patients' worries and considerations', 69% (n = 3130) to 'check patients' understanding of information', 66% (n = 3006) to 'discuss patients' priorities in life and the consequences of treatment options for these priorities', and 67% (n = 3045) to 'create awareness of the patient’s role in the decision making'. This happened in 47%, 17%, 15% and 10% of these patients, respectively.ConclusionThe majority of (former) patients with cancer expressed a need for active GP involvement in cancer care. GP support in the fundamental SDM steps is presently insufficient. Therefore, GPs should be made aware of these needs and enabled to support their patients with cancer in SDM.

The increasing number of treatment options for cancer patients creates the opportunity for patients to choose a treatment that best fits their preferences. Patient involvement is key for personalized cancer care and is enabled by shared decision making (SDM). However, in current practice, essential steps for SDM are impeded. To improve SDM, healthcare professionals and patients advocate for an increased role of the general practitioner (GP) after a cancer diagnosis. We investigated patients’ experiences with involvement of the patient and the GP in decision making for cancer treatment. Our research showed that patients’ experiences with patient and GP involvement in decision making do not always match their preferences. In addition, timely involvement of the GP was challenging, as the time between diagnosis and treatment decision was often too short. In addition, patients’ and physicians’ experiences with GP involvement were mainly positive and GP involvement was considered as of added value for reflection on diagnosis and SDM. However, patient and (timely) GP involvement needs improvement. To tailor cancer care to patients' preferences, active exploration of patients’ preferences for patient and GP involvement is needed. Furthermore, adequate collaboration and information exchange between primary and secondary care is necessary to timely involve the GP after a cancer diagnosis.

Purpose Supportive care for cancer patients may benefit from improving treatment decisions and optimal use of the family physicians’ and specialists’ strengths. To improve shared decision-making (SDM) and facilitate continuity of primary care during treatment, a cancer care path including a “time out consultation” (TOC) in primary care before treatment decision, was implemented. This study assesses the uptake of a TOC and the added value for SDM. Methods For patients with metastatic lung or gastro-intestinal cancer, a TOC was introduced in their care path in a southern region of The Netherlands, from April until October 2016. Uptake of a TOC was measured to reflect on facilitation of continuity of primary care. The added value for SDM and overall experiences were evaluated with questionnaires and semi-structured interviews among patients, family physicians, and specialists. Results Of the 40 patients who were offered a TOC, 31 (78%) had a TOC. Almost all patients, family physicians, and specialists expressed that they experienced added value for SDM. This includes a stimulating effect on reflection on choice (expressed by 83% of patients) and improved preparation for treatment decision (75% of patients). Overall added value of a TOC for SDM, only evaluated among family physicians and specialists, was experienced by 71% and 86% of these physicians, respectively. Conclusion and Implications for Cancer Survivors The first experiences with a TOC in primary care before cancer treatment decision suggest that it may help to keep the GP “in the loop” after a cancer diagnosis and that it may contribute to the SDM process, according to patients, family physicians, and specialists.

BackgroundOverprescription of antibiotics for lower respiratory tract infections (LRTIs) in children is common, partly due to diagnostic uncertainty, in which case the addition of point-of-care (POC) C-reactive protein (CRP) testing can be of aid.AimTo assess whether use of POC CRP by the GP reduces antibiotic prescriptions in children with suspected non-serious LRTI.Design & settingAn open, pragmatic, randomised controlled trial in daytime general practice and out-of-hours services.MethodChildren between 3 months and 12 years of age with acute cough and fever were included and randomised to either use of POC CRP or usual care. Antibiotic prescription rates were measured and compared between groups using generalising estimating equations.ResultsThere was no statistically significant reduction in antibiotic prescriptions in the GP use of CRP group (30.9% versus 39.4%; odds ratio [OR] 0.6; 95% confidence interval [CI] = 0.29 to 1.23). Only the estimated severity of illness was related to antibiotic prescription. Forty-six per cent of children had POC CRP levels ConclusionIt is still uncertain whether POC CRP measurement in children with non-serious respiratory tract infection presenting to general practice can reduce the prescription of antibiotics. Until new research provides further evidence, POC CRP measurement in these children is not recommended.

Due to the ageing population and improving diagnostics and treatments, the number of cancer patients and cancer survivors is increasing. Policymakers, patients and professionals advocate a transfer of (part of) cancer care from the hospital environment to the primary care setting, as this could stimulate personalized and integrated care, increase cost-effectiveness and would better meet the patients’ needs and expectations. The effects of structured active follow-up from primary care after cancer diagnosis have not been studied yet. Therefore the GRIP study aims to assess the effects of structured follow-up after a cancer diagnosis, by a primary care team including a general practitioner (GP) and a home care oncology nurse (HON), on satisfaction and healthcare utilization of patients treated with curative intent. We will conduct a multicentre, two-arm randomised controlled trial in The Netherlands. We plan to include 150 patients who will be treated with curative intent for either breast, lung, colorectal, gynaecologic cancer, or melanoma. Further inclusion criteria are: age 18 years and older, able to answer questionnaires in Dutch, GP agrees to participate and the possibility to include the patient before the start of treatment. All patients receive care as usual. The intervention arm will receive additional structured follow-up consisting of a GP consultation before onset of treatment to empower the patient for shared decision making with the specialist and a minimum of three contacts with the HON during and after treatment. Primary outcomes are: patient satisfaction with care at the level of specialist, GP and nurse and healthcare utilization. Secondary outcomes include: quality of life, employment status, patient empowerment, shared decision making, mental health and satisfaction with given information. Repeated questionnaires, filled in by the participants, will be assessed within the 1-year study period. This randomised controlled trial will evaluate the effects of structured follow-up after a cancer diagnosis by a primary care team including a GP and HON, for patients undergoing treatment with curative intent. Results from the present study may provide the evidence needed to optimally rearrange responsibilities in cancer care delivery and consequently improve cancer care and patient related outcomes. Trial number: NTR5909 .