{
  "abstract": "Objective To develop an evidence-based reference model defining the exact boundaries of the missions and activities of the hospital-based cancer care coordination nurses, to clarify their roles and standardise practices for impact evaluation.Methods and analysis Design: A multiphase, mixed-methods modelling study was conducted. First, we collected qualitative and quantitative data on cancer coordination nursing practices through a multicentre cross-sectional study. Mixed data were mapped to a previously developed reference framework to derive the reference model. Setting: 10 French hospitals, varying in size and status, over 20 months (2018–2019). Participants: Thirty-six hospital-based cancer coordination nurses, 162 patients, 142 caregivers and 352 healthcare professionals from both hospital and primary care settings. Main outcome measures: Qualitative data on roles, activities and experiences were collected through observations, interviews and focus groups. Quantitative data on role perceptions and organisational context were gathered using standardised questionnaires assessing support, commitment, role conflict, patient quality of life, precariousness and caregiver burden.Results We identified core missions such as active listening, clinical needs assessment and internal coordination, but also differences leading to a nurse typology into three groups: ‘complex pathway coordinators’, ‘treatment specialists’ and ‘polyvalent nurses’. Only ‘complex pathway coordinators’, fully aligned with the reference framework, performed complete care coordination and correspond to the reference model.Conclusion The modelling provides a foundation for standardising cancer care coordination practices, improving training and establishing a standard intervention for evaluating cancer care navigation which the authors are still calling for.Trial registration number NCT03350776.",
  "authors": [
    {
      "affiliations": [
        "Centre de coordination en cancérologie (3C), CHU de Bordeaux, Bordeaux, France",
        "Bordeaux Population Health, PHARes team, INSERM U1219, Bordeaux, France"
      ],
      "name": "Françoise Colombani"
    },
    {
      "affiliations": [
        "Centre de coordination en cancérologie (3C), CHU de Bordeaux, Bordeaux, France"
      ],
      "name": "Nicolas Calcagni"
    },
    {
      "affiliations": [
        "Bordeaux Population Health, PHARes team, INSERM U1219, Bordeaux, France",
        "ISPED, Bordeaux School of Public Health, Université de Bordeaux, Talence, Nouvelle-Aquitaine, France"
      ],
      "name": "Matthieu Sibé"
    },
    {
      "affiliations": [
        "Unité de soutien méthodologique à la recherche, Pôle de Santé Publique, Service d’Information Médicale, CHU de Bordeaux, Bordeaux, France"
      ],
      "name": "Marion Kret"
    },
    {
      "affiliations": [
        "LabPsy UR4139, Université de Bordeaux, Bordeaux, Nouvelle-Aquitaine, France"
      ],
      "name": "Hugo Fournier"
    },
    {
      "affiliations": [
        "Service d’oncologie médicale, Pôle de Cancérologie, CHU de Bordeaux, Bordeaux, France"
      ],
      "name": "Alain Ravaud"
    },
    {
      "affiliations": [
        "LabPsy UR4139, University of Bordeaux, Bordeaux, Aquitaine, France"
      ],
      "name": "Bruno Quintard"
    },
    {
      "affiliations": [
        "Bordeaux Population Health, PHARes team, INSERM U1219, Bordeaux, France",
        "INSERM U1219, ISPED, University of Bordeaux, Talence, Aquitaine, France",
        "Unité méthodes évaluation en santé (UMES), Pôle de Santé Publique, Service d’Information Médicale, CHU de Bordeaux, Bordeaux, France"
      ],
      "name": "Florence Saillour-Glenisson"
    },
    {
      "affiliations": [],
      "name": "EPOCK research project"
    }
  ],
  "full_text": "WHAT IS ALREADY KNOWN ON THIS TOPIC Care coordination has become a global public health priority due to demographic changes and the growing burden of chronic diseases, including cancer.Cancer patients are particularly exposed to fragmented care because their management involves multiple professionals and services across different levels of the healthcare system.Evidence-based reference models for nurse-led cancer care coordination are essential due to conflicting results from previous studies on navigation interventions, with nurses holding various roles and responsibilities that involve multiple skills and overlapping practices.WHAT THIS STUDY ADDS This national-level mixed-methods study developed an evidence-based modelling of hospital-based cancer care coordination nurses’ intervention focused on their core missions, working context, required competencies, and supporting tools.Experienced oncology nurse coordinators find their roles rewarding due to autonomy, expertise, and career opportunities, despite unclear mission boundaries and role conflicts. Routine common activities included active listening, assessment of clinical needs, and internal coordination.A three-category nursing typology emerged: 'complex pathway' nurses managing cross-sector internal and external coordination (in-patient, and out-patient healthcare) for highly complex cases; 'treatment specialist' nurses focused on managing cancer treatment toxicity in dedicated units; and 'polyvalent' nurses balancing coordination with care duties.This modelling allowed the identification of the hospital-based cancer care coordination nurses reference model, aligned with the characteristics of the ‘complex pathway coordinators’ category. This reference model accurately defines the exact boundaries of hospital-based cancer care coordination nurses’ activities and rolesHOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY Impact on practice: This modelling provides a foundation for standardising oncology care coordination practices, refining training programmes, and guiding the implementation of job descriptions to support consistent, high-quality care delivery. Impact on professional development: It clarifies role definitions, supports career progression and recognition for oncology nurse coordinators, and informs funding allocation and workforce planning. Impact on research: The reference model supports the development of standardised interventions, helping to address recurrent methodological and operational challenges and providing a standard intervention for evaluating the effects and impact of cancer care coordination programmes which the authors continue to advocate for.Introduction Challenges in cancer care coordination Continuous advances in diagnostic methods and therapies, combined with global population ageing, have significantly increased the number of people living with cancer. Over 53 million patients have been diagnosed within the past 5 years, and new cases are projected to reach 35 million new cases in 2050. 1 In addition to the burden of acute cancer treatment, survivors may develop long-term disabilities requiring ongoing care.2–4 Cancer treatment often involves multidisciplinary care delivered over long periods of time by a large team of medical, nursing and allied health practitioners in both hospital and community settings. Furthermore, the complex nature of the disease and its management puts cancer patients at risk of receiving poorly organised and fragmented care.5 6 Care among multiple providers needs to be coordinated to avoid wasteful duplication of diagnostic testing, inappropriate polypharmacy and potential confusion resulting from conflicting care plans. Additionally, poor care coordination is associated with reduced symptom control, medical errors and high costs.7–9 Given the increase in cancer incidence and cancer survivorship, many national strategic cancer plans have identified cancer care coordination as a public health priority.10–12 However, attempts to improve care coordination to date have been hindered by a lack of clarity about what the concept of ‘care coordination’ actually encompasses.13 Cancer care coordination models Various models of coordinated care have been documented and applied across a variety of settings during the past decade. This has resulted in an array of care coordination definitions and conceptual frameworks. 5 10 These models provide conceptual support for many care coordination interventions, ranging from individual case management14–16 to disease management population-based programmes17–19 and fully integrated care systems, such as the chronic care and oncology care models.20 21 These integrated care models consider care coordination at three levels. The micro level (clinical) refers to the delivery of healthcare to individual patients (coordination of person-centred care), the meso level (organisational) refers to inter-organisational relationships designed to deliver comprehensive services to a defined population (coordination of population-based care and healthcare services) and the macro level (system) refers to health and social systems (governance, financing, and policy).22 23 This model structure has enabled the comprehensive integration of patient context, environment, capacity and involvement in care.24 Across the continuum of cancer care, patient navigation based on the case management model is the most frequent care coordination intervention worldwide. Since the 1980s, various care coordination profession roles have been introduced empirically in healthcare, without any conceptualisation, strategic planning or any homogenous implementation across France. This has led to a wide variety of functions, as seen in the diverse job titles (navigator nurses, liaison nurses, nurse coordinators, coordinating nurses, ‘pivot’ nurses, case managers, healthcare workers and social workers).8 12 25 26 All these professionals serve various roles as care coordinators. They may be dedicated to managing transitions between hospitals, primary care and homes, supporting patients across their care journey or overseeing specific cancer treatments.This heterogeneity, particularly among nurses coordinating transitions across care settings, can impair understanding of actions and obscure mission definitions, thereby hindering the implementation and the evaluation of cancer care coordination interventions.6 27 28 Furthermore, the heterogeneity of the tested interventions and lack of underlying conceptualisation has led to conflicting results among studies examining the impact of care coordination.12 29–35 The EPOCK research project Variations in the roles and activities of coordination nurses in the French healthcare system have led to similar challenges in cancer care. New roles have been implemented through successive various experimentation, including nurses dedicated to clinical coordination, community coordination, assisting with cancer diagnoses, managing complex cases or monitoring treatment toxicity and post-treatment care. These differences revealed seven different types of oncology coordination nurse. 36–42 This high degree of heterogeneity is associated with decreased effectiveness, coherence and efficiency of care.12 43 44 Accordingly, it is necessary to clarify the boundaries of these nursing professions.The EPOCK project aimed to model the intervention of hospital-based cancer care coordination nurses, to provide a clearer taxonomy for these professions and to analyse the boundaries of their activities.The EPOCK project was an iterative evidence-based modelling study of complex interventions.45 The two specific objectives were first, to gather information about care coordination by creating a theoretical reference framework (conceptual stage) and collecting field data on practices and working contexts of cancer care coordination nurses (observational stage), and second, to pool these data to develop a reference model for hospital-based interventions conducted by these nurses.This paper presents the final modelling results of the EPOCK project. The theoretical phase has already been described and published separately46 and will not be further developed here.Methods Study design This study used a two-phase integrative modelling design with a multisource mixed triangulation method ( figure 1):Phase 1: a two-stage data collection on Cancer Care Coordination (conceptual and observational stages). The conceptual stage consisted of a framework development through a scoping review and a nominal group technique.46 The observational stage was a multicentre cross-sectional field study conducted over 20 months (April 2018–November 2019) combining sequential qualitative and quantitative analyses of practices, contexts, perceptions and work attitudes of hospital-based cancer care coordination nurses (referred to as ‘nurse coordinators’). A participant could have participated in both the qualitative and quantitative studies.Figure 1Multiphase convergent mixed-methods design of the EPOCK research project.Phase 2: Integration of data using convergent triangulation. Data from observational study were integrated into Contandriopoulos’ framework of complex interventions.47 The resulting model components were then mapped to the components of the predefined reference framework.46 The methodological choices for each project phase were made by an interdisciplinary scientific committee comprising researchers in management sciences, health psychology, health service evaluation, medical oncology and public health.Observational mixed study of the practices of cancer nurse coordinators Population and settings: a multiple sampling strategy In France, seven different categories of cancer coordination nurses can be identified, representing the diversity of hospital-based cancer coordination nurses ( online supplemental supp-table A). The nurses in these categories are referred to as ‘target nurses’. The study involved ten healthcare institutions of varying status and size across five major regions of France, where each category of ‘target nurse’ was implemented (four institutions involving the same category of ‘target nurse’ called ‘Cancer care nurse coordinator’). Each of these institutions also implemented other nurses responsible for coordinating oncology patients, focused on specific stages of the care pathway; in the article, they are referred to as ‘other nurse coordinators’ (online supplemental supp-table A).SP110.1136/bmjonc-2025-000771.supp1Supplementary data The study population included nurses with seven different designations in 10 health facilities, other cancer care nurse coordinators within each centre, the patients and caregivers assigned to these nurse coordinators and the professional partners of all nurse coordinators within their institutions and communities. The sample included all current designations of hospital-based nurses involved in cancer care coordination in France. Community coordination structures without healthcare facility status were excluded.Each nurse coordinator selected 10 professional partners (five in-hospital, five out-of-hospital), from a range of medical, medico-social, social or other fields. They were instructed to select five patients from those they had managed over the past month, in order to reflect their most recent practice as closely as possible. Each patient had to have received at least two contacts and together represent a broad diversity of age, stage of care, severity and cancer type. Each patient then nominated one caregiver.The selection of the study sample (size and participant selection methods) was defined so as to ensure both the precision of the measurement and the diversity of the participants (online supplemental supp-table B).Data collection Qualitative data Two psychology researchers collected qualitative data to provide a comprehensive analysis of practices, perceptions and attitudes regarding care coordination, following Consolidated criteria for Reporting Qualitative research (COREQ) guidelines. 48 Structured on-site observations were conducted over 3 days; the daily activities of target nurse coordinators (planning, time management and verbal/non-verbal communication) were observed, recorded and timed; two focus groups (FGs) 49 were conducted: a ‘mono-professional’ FG with six of 10 target nurses (four were unavailable) explored role variability across care settings, and a ‘Mmulti-stakeholder’ FG included diverse eight participants. (a hospital-based coordinator nurse, a cancer support nurse, a medical oncologist, a patient, a caregiver, a general practitioner (GP), a social worker and a community-based private nurse) to refine perceptions of cancer care coordination function. Semidirective individual interviews (ITWs) with nurse coordinators, professional partners, patients and caregivers explored their experiences and perceptions of cancer care coordination. Participants were selected to ensure heterogeneity, and five interviews per participant were planned in order to achieve discourse saturation.All FGs and ITWs were recorded, anonymised and fully transcribed.4 Quantitative data Validated standardised self-report questionnaires were administered to the whole study population (one survey per participant) to measure organisational support 50 and commitment,51 role conflict and role ambiguity among cancer care nurse coordinators;52 quality of life,53 satisfaction and deprivation among patients54 and family burden among caregivers;55 and satisfaction with cancer care coordination in hospitals and primary care settings among the professional partners by ad hoc questionnaire, derived from a questionnaire drawn for a national study on the evaluation of pilot programmes for personalised patient pathways during and after cancer (figure 2).56 Figure 2Data collected from participant profiles (quantitative study) as part of the EPOCK research project.Participants had 2 weeks to complete the questionnaires, with up to three reminders for non-response.57 Sample size was determined to ensure sufficient precision around the estimated mean scores on the different scales used (online supplemental supp-table B).Data analysis Parallel analyses Qualitative data analysis FG and ITW recordings were analysed for thematic and semantic content using NVivo12. Two researchers independently ensured coding reliability (Cohen’s kappa >0.80), resolving discrepancies through discussion. An inductive, bottom-up coding approach identified emergent themes later compared with the reference framework. 46 Findings presented in interdisciplinary meetings, highlighting themes on care coordination, roles, satisfaction and challenges. We identified key themes related to care coordination, roles, satisfaction and difficulties. All participants’ perspectives were systematically analysed. Each thematic occurrence was documented, allowing for the calculation of theme frequencies. This approach facilitated the identification of the most prevalent and commonly shared viewpoints and discourses within the study population and to distinguish them from those generating disagreement. A categorisation of nurses’ profiles was achieved by cross-referencing data from interviews and observations, particularly regarding the various activities they may have in common or not, the frequency of these activities and the organisational contexts. This typology was carried out in an inductive and interpretative manner. A lexicometric analysis, based on correspondence analysis, was then conducted to explore the differences in discourse across profiles, thereby assessing the robustness and relevance of the categorisation.Quantitative data analysis Contextual factors (organisational, clinical, social) were summarised using descriptive statistics: frequencies, percentages, means, SD, medians, ranges and quartiles. Questionnaire scores were computed following the validation guidelines of each original publication, 50 52 55 58–61 adhering to recommended scoring methods, subscale structures, threshold values (when applicable), scale interpretations and prescribed handling of missing data. We conducted a comparative analysis among the three categories of nurses identified by the qualitative analysis for variables characterising the nurses (sociodemographic and professional characteristics, working context, attitudes towards the working context), the patients they followed (sociodemographic, professional and clinical characteristics, quality of life score, satisfaction with the nurses), the patients’ relatives (sociodemographic characteristics, relationship with the patient, Zarit score, satisfaction with the nurses) and the professionals interacting with these nurses (sociodemographic and professional characteristics, satisfaction with the nurses). No inferential statistical tests were conducted, as the purpose of this analysis was solely to illustrate and describe the observed profiles. The analyses were carried out using SAS9.4.Integrative phase (triangulation) After a step of transformation, quantising some qualitative data selected by the scientific committee, 62 the integrative phase combined sequential inductive and deductive analyses, refined through iterative multidisciplinary scientific consensus. The inductive phase consisted of an embedded mixed analysis conducted in two steps:63 Convergence: linking the qualitative and quantitative data to create a complex intervention evaluation model.We examined the points of convergence and divergence in the quantitative and qualitative results in a data matrix. To establish the common core of activities, we considered the concordance between qualitative sources, supported by quantitative data, applying a frequency threshold of 60% or higher. This choice of the 60th percentile was defined by the scientific committee, as it allows the identification of the most frequent situations. Beyond this core, specific characteristics were identified within minority groups. To go forward in the analyses of the nurse coordinators’ activities, we determined the relative weight of each activity within each group, in assessing the proportion of time dedicated to tasks observed on site.This iterative process enabled us to ascertain the implications of each dataset and seek new ways to formulate conclusions in light of both types of findings.64 We merged the quantitative and qualitative data into each dimension of the complex intervention evaluation model created by Contandriopoulos and colleagues.47 We then specified the following core elements recommended in the review by Skinvington and colleagues: 45 the contexts (history of implementation, legislative aspects, economic and symbolic contexts), structural characteristics (physical resources including human, technical, infrastructural and organisational resources), actors (skills and initial training), working processes (missions and effective activities) and effects. Assimilation: Mixed data were then stratified using the nurse-led cancer care coordination typology. The deductive phase: Mapping field observations onto components of the theoretical framework.The complete set of field observations was mapped onto the reference framework,46 analysing interdependencies to finalise the nursing care coordination model in cancer care (online supplemental supp-table C).46 The results are presented in a comprehensive manner, incorporating information from all available sources. Quantitative findings are reported as frequencies or summarised in tables that display the numerical data. Qualitative findings are consistently attributed to their sources, with verbatim excerpts provided in quotation marks.Results Participants Data from 692 individuals (78% of the target population) across 10 centres were analysed. A total of 204 were excluded due to refusal, non-selection and non-applicability ( table 1, online supplemental table D and E). The sample comprised 36 nurse coordinators, 352 professional partners and 162 patients. Among the partners, 261 participated in quantitative data collection (questionnaires) and 91 in interviews or FGs. The whole included health partners (352) comprised nurses (31%), medical specialists (22%), supportive care professionals (31%) and administrative staff (medical secretaries and managers; 12%). Just over half of the 352 professional partners were employed in healthcare institutions (62%). The in-hospital professionals were represented by two main categories: specialist physicians (32%) and supportive care professionals (24%), whereas the out-of-hospital professionals were mainly nurses (59%). In our sample, GPs were very weakly represented (8%) (tables 1 and 2). Of the 162 patients, 156 completed questionnaires, 35 gave interviews and 29 did both; 95% were in active cancer treatment, 54% had metastatic cancer and over one-third were socially vulnerable. Their caregivers (n=142) reported a minor support burden (Zarit score-16%) (table 2, online supplemental supp-table D).Table 1Study population characteristics: the EPOCK research projectParticipant typeQualitative study participants onlyn1 QLQuantitative study participants onlyn2 QTParticipants in both studies only n3=QL&QTParticipantsincluded in both studiesNtotal=n1 + n2 + n3(%)Participants not included N(%)EligibleparticipantsNe=n + NtotalNurse coordinators0036 36 95 2 5 38 Patients612729 162 85 28 15 190 Caregivers212020 142 75 48 25 190 Professional partners91261– 352 75 120 25 472  Intrahospital, n (%) 53 58 164 63– 217 6247*264*  Medical specialist 16 52 70  General practitioner– 2 2  Pharmacist 4 9 13  Nurse 5 23 28  Other allied health professionals† 7 –7  Nursing manager 0 9 9  Supportive care‡ 14 39 53  Administrative§ 7 19 26  Others– 11 11 Extra hospital, n (%) 38 42 97 37– 135 3853¶188¶  Medical specialist 2 1 3  General practitioner 1 10 11  Pharmacist 2 7 9  Nurse** 24 56 80  Supportive care§ 3 7 10  Administrative 4 2 6  Others 2†† 14‡‡ 16 Total 99 508 85 692 78 198 22 890 The numbers in bold indicate the total number of participants included across both study types (qualitative only, quantitative only, and those in both quantitative and qualitative studies).*10 missing data on the workplaces of professional partners†Other allied health professionals: healthcare assistants, radiographers‡Supportive care professionals: social worker, dietician, physiotherapist, psychologist, sociobeauty therapist, wigmaker, podiatrist§Administrative professionals: medical secretaries¶10 missing data on the workplaces of professional partners (missing data due to two nurses who have not included their professional partner)**Self-employed nurses, nurses working for independent healthcare providers††QL ambulance driver, salesperson‡‡QT: home meal delivery service, pharmacy dispenser, Clinical Research Associate, Medical representativeQL, qualitative; QT, quantitative.Table 2Study population description by participant: the EPOCK research projectStudy population characteristics*Total1. Nurse coordinators (NCs), N36Age, years, N, md342 Median (IQR)41(34–50)Female, n (%) (n=36)35(97)Nurse coordinator designations by investigation centre* (n=36)**See definitions at the bottom of the table3612(33) NCs 6(17) OPNs 6(17) APAs 5(14) DA-TAS 4(11) HAH-CAH 3(8) OCNsWorking context of NCs (n=36)36 Health facility status, n (%)  Public19(53)  Non-profit private healthcare facility2(6)  Private15(42) Health facility size (Standardized Hospital Discharge Summary (SHDS)), n (%) (n=36)  Size 1 to 2 (30 to 15 000 000 SHDS)/or small centre15(42)  Size 3 to 5 [15 000 SHDS and + [ / or medium-to-large centres21(58) Exclusive cancer centre, n (%) (n=36)17(47) Affiliation with the ‘3C’ known by nurses, n (%) (n=36)12(34) (3C: Centre for Cancer Coordination) Nurse positioning/declared by the management staff during the reference visit to the centre at baseline, n (%) (n=36)*  Dedicated to a single care unit10(28)  Cross-cutting throughout several medical departments26(72) Nurse positioning/effective, n (%) (n=36)*  Dedicated to a single care unit10(28)  Cross-cutting throughout several medical departments26(72)   Seniority in the position (year), median (IQR) (n=36)4(2-7) Additional training (continuing vocational training), n (%) (n=36)27(75) Additional university training, n (%) (n=36)14(39) Time dedicated to functions (%), median (IQR) (n=36)100(100-100) No. of hours worked in the past week, median (IQR) (n=36)38(36-40) Nurses exceeding working hours without compensation or recovery19(53) (sometimes, often, always)m n (%) (n=36) Work stoppages (at least once in the last 12 months), n (%) (n=36)9(25) Existence of a job description document, n (%) (n=36)  Yes19(53)  No12(33)  Don’t know5(14)Existence of criteria for referring patients to NCs, n (%) (n=36)18(50)Attitudes towards the working context, scores/100, median (IQR) Eisenberger SPOS† score60(55-68) Rizzo’s questionnaire, role conflict68(48-70) Rizzo’s questionnaire, ambiguity65(53-73) Allen and Meyer’s scale, affective commitment (**one case with missing data)55(48-59) Allen and Meyer’s scale, continuance commitment55(42-70) Allen and Meyer’s scale, normative commitment36(29-52)2. Patients, N156 Age, mean (SD) (n=156)62.0(12.9) Female, n (%) (n=156)87(56) Socio-professional categories, n (%), N md1533  Retired60(39)  Administrative staff (employees)35(23)  Others (housewife, priest), unemployed, student, long-term illness/disability22(14)  Managers–associate professionals22(14)  Craft workers, farmers, craft and trades workers14(9) Patient precariousness, N md14313  EPICES score ≥30, n (%)51(36)  EPICES score, median (IQR)22(14-37) Cancer types, n (%) (multiple tumours possible in the same patient)  C00-C14 Malignant neoplasm (neoplasms) of lip, oral cavity, or pharynx12(9)  C15-C26 Malign neoplasms of digestive organs28(20)  C30-C39 Malign neoplasms of respiratory or intrathoracic organs19(14)  C50-C58 Malign neoplasm. of breast or female genital organs47(33)  C64-C68 Malign neoplasm of urinary tract14(10)  C81-C96 Malign neoplasms of lymphoid, haematopoieticc tissue32(23)  Others: C40-41 and C45-49, malign neoplasm of bone, soft tissues; C43-C44, melanoma and other malignant neoplasms of skin; C60-C63, malign neoplasms of male genital organs; C69-C72, malign neoplasms of eye and central nervous system; C73-75, malign neoplasms of thyroid and other endocrine glands; C76-80, malign neoplasms of ill-defined28(20) Cancer staging declared by nurses, N md12828  Distant metastasis, n (%)69(54) EORTC QLQ-C30‡ (score/100) median (IQR), N md  Global health status/quality of life (QoL)75(58-83)  Functional scales   Physical functioning80(60-93)   Role functioning67(33-83)   Emotional functioning67(50-83)   Cognitive functioning83(67-100)   Social functioning67(42-100)  Symptom scales   Fatigue56(33-78)   Pain33(0–50)3. Caregivers, N140 Age (years), N md1382  Mean (SD)59.3(12.6) Gender, N md1381  Female, n (%)86(62) Partner profile, n=140140–  Family, n (%)135(96)   Wife/husband, n (%/total caregivers)100(71) Zarit Burden Interview, N md12713  Zarit Burden Interview (score/100), median (IQR)16(9-27)4. Professional partners, N261 Age (years), N md2583  Age, mean (SD)42.2(10.3) Female, n (%) (n=261)201(77) Status of the partner professionals’ organisation, N md261–  Public health facilities, n (%)96(37)  Private health facilities, n (%)68(26)  City-based medical and medico-social structures, n (%)30(11)  Private medical or paramedical practitioners, n (%)55(21)  Other (lab, association, network), n (%)12(5) Professional category§, N md2601  General practitioner, n (%)12(5)  Medical specialist, n (%)53(20)  Nurse, n (%)79(30)  Supportive care professional (psy, diet, rehabilitation, social worker), n (%)46(18)  Pharmacist, n (%)16(6)  Medical secretary, n (%)21(8)  Health executive, n (%)9(4)  Others, n (%)24(9) NCs: nurse coordinators (ie, cancer care coordination nurses), discharge nurses for home parenteral nutrition, patient pathway care coordination (P2C2) nurses, ‘nurses in interdisciplinary Department of Oncology supportive care’ (DISSPO nurses), oral chemotherapy nurses (OCNs), immunotherapy nurses, oncology pivot nurses (OPNs), ambulatory patient assistance (APA) nurses, including the so-called after-cancer (APA-AC) and coordination and assistance in chemotherapy (APA-COACH) nurses, ‘nursing support at time of diagnosis’ (DA-TAS) nurses and ‘hospital at home nurses for intravenous chemotherapy at home’ (HAH-CAH) nurses.*All data are from quantitative analyses except those marked with an ‘*’, which refer to quantified qualitative data†SPOS: Survey of Perceived Organizational Support score‡EORTC: European Organisation for Research and Treatment of Cancer; QLQ-C30: Quality of Life of Cancer Patients-30 item version§one missing dataIQR, interquartile range; md, missing data; N, sample size; SD, Standard deviation.Shared features of nursing coordination functions Context of implementation and institutional positionAs retrieved in ITWs, most nurse coordinators held different titles for identical roles, while some others shared the same title but were assigned different responsibilities (eg, some nurses were assigned managerial rather than clinical tasks or some nurse coordinators’ responsibilities could overlap with other staff health managers, medical secretaries, doctors or programming nurses). Some felt they had ‘catch-all’ roles with unclear responsibilities, as shown by high role tension (68/100) and ambiguity (65/100) scores and low agreement (30%) on clear responsibilities (table 2). Additionally, half of these nurses were unaware of a job description document outlining their duties (table 2).In the ITWs, coordination nurses reported they were regarded by management as a valuable, scarce resource by management (median of four per centre), with specific skills making them difficult to replace. However, they felt unsupported within the institution, as reflected by low scores on Eisenberger’s Perceived Organisational Support (POS) scale, with only 30% agreeing that their contributions were valued and 20% feeling the institution cared about their well-being (table 2). Through ITWs and FGs, nurse coordinators revealed the perception of their fragile position, expressed as being partly due to the absence of a care coordination pricing model in France, leaving them vulnerable to being reassigned or dismissed. In addition, nurse coordinators reported they were concerned about being confined to experimental roles without career advancement and called for professional recognition and financial compensation for their specialised skills and responsibilities.Working environmentDespite feeling limited institutional support, nurse coordinators reported high job satisfaction (70%), largely due to patient recognition (table 2). They also viewed their roles as ‘expert’-level and more autonomous than standard ‘executor’ nursing, which allowed them to take ‘initiative’ and feel empowered. This autonomy was identified in ITWs and FGs as a key factor in their recruitment. Additionally, they appreciated the regular work schedule (five weekdays, 7.5-hour shifts) and saw these positions as valuable mid-career opportunities.Most nurses worked across multiple departments (72%) (table 2), enabling them to act as effective intermediaries between the clinical teams, patients and community. In ITWs, nurses in cross-functional roles described this position as a useful and effective asset, but also as a stress in finding the right position within the care teams. Some nurses faced opposition from the care team when starting their roles. Many felt isolated and unsupported by their hierarchy, including managers, physicians or nurse project managers, as reflected in moderate POS scores (60%) (table 2). However, a few appreciated effective support, especially with peer supervision or training opportunities.Nurse coordinators managed heavy workloads, often overseeing over 200 patients, leading to stress, long hours and frequent interruptions. In addition, they still faced emotional strain from the constant demands and high-pressure situations with patients.Professional skills and trainingThe majority of the interviewed nurses, with about 20 years of nursing experience and a median of 4 years in their coordination role, identified four key areas of knowledge essential for their job: clinical expertise, proficiency in patient interviews, experience in multiservice provision and a comprehensive understanding of the local/regional healthcare ecosystem.Cross-disciplinary experience, especially with palliative care teams, was also valued. Some nurses considered disease and cancer treatment knowledge useful but not essential at the start, as it could be learnt later.Only a minority held university qualifications before their roles, but 27 out of 36 completed additional training, often informal or provided by pharmaceutical companies. Many felt excluded from formal training opportunities.The nurse coordinators stressed the importance of interpersonal (soft) and organisational (know-how) skills over technical or theoretical knowledge of cancer treatments. They valued empathetic, attentive listening to foster a supportive relationship built on trust with patients, adopting a calm and non-judgmental approach. They saw themselves as ‘pathfinders,’ highlighting overlooked issues in the fast-paced care system. Diplomacy, patience, resistance to pressure, critical thinking, adaptability (as ‘chameleon’) and professionalism were also considered vital in their role with professional partners.Nursing tools used to carry out coordination functionsNurse coordinators faced resource shortages, including inadequate equipment like mobile phones with text message capabilities. Despite various digital tools, issues with data collection, system interoperability and security led them to rely on personal devices for direct communication.Missions, actual activities and scope of activitiesMissionsA total of four overarching principles emerged by consensus from all participants, forming a shared foundation of nurse coordinators’ role: (1) building trust and being accessible to all stakeholders, acting as a ‘common thread’ for patients and families, in contrast to the usual difficulties of contact with hospital staff. (2) Being a committed, empathetic and readily available point of contact, ensuring timely responses (‘she uses simple words’, ‘she’s our lifeline’, ‘our spokesperson’). (3) Providing comprehensive, personalised support for patients and their families, considering them as autonomous individuals (‘we are considered full human beings’, ‘not only patients who require treatment’) and addressing their overall personal living environment. (4) Providing the expertise to anticipate and manage the frequent high-intensity crises in cancer care.Common core activities and differences among nurse coordinatorsAll nurse coordinators carried out face-to-face clinical care coordination with patients, some proactively managing patient files, others responding to ad hoc requests.Follow-ups were either passive or proactive, aiming to ‘maintain patient connection’, to ensure that patients did not feel ‘abandoned’ and action plans were followed.All qualitative data sources consistently demonstrated that nurse coordinators share three common activity phases: (1) During patient referral, nurses managed cancer patients based on centre-specific characteristics such as cancer type, treatment, care stage and patient factors (eg, age, medical or social complexity). (2) In the preparation phase, they scheduled appointments and explained their role to patients. (3) In the nursing support phase, they followed the French TAS programme’s four steps: active listening, reformulating, assessing needs and suggesting support care referrals.65 Nurses documented actions at each stage, though the required traceability, especially extra documentation beyond electronic records, was widely viewed as burdensome. Additional activities included attending meetings, gathering information and training other nurses (teaching or mentoring other nurses in coordination roles).Scope of activities for nurse coordinators (internal or external care coordination)The scope of activities varied among nurses and centres, with all nurse coordinators focusing primarily on ‘internal coordination’, centred on inter-professional communication within the hospital. A minority of coordinator nurses also engaged in ‘external coordination’ collaborating with community-based partners, such as private nurses (83%), dispensing pharmacists (70%), medical secretaries (47%) and GPs (33%). Notably, 67% of nurse coordinators had infrequent or no contact with GPs. Frequently contacted entities included rehabilitation facilities (58%), home healthcare providers (56%) and home hospitalisation services (46%). In contrast, contact with territorial coordination support platforms (the ‘Dispositif d'Appui à la Coordination’ DACs) was minimal, with 25 out of 36 nurses reporting no interaction (table 2).Although external coordination was less frequent, FG participants pointed out its crucial role in coordination missions. The main external activities included organising patient discharge, developing follow-up plans with home-based providers, coordinating home healthcare services and proactively addressing future patient needs through comprehensive support planning.Perceived benefits of nurse coordinatorsPerceptions of cancer care coordination nurses’ contributions varied by participant perspective and aligned with the reference framework (online supplemental supp-table G).Specific features according to nursing typology and comparison with the reference framework Three distinct nursing profiles emerged based on variations in care coordination contexts, time allocation, patient pathways, scope of care coordination (internal/external), managerial settings, work attitudes and the alignment of activities with the reference framework: (1) complex care cancer pathway nurse coordinators (11 nurses), (2) cancer treatment specialist (17 nurses) and (3) polyvalent nurse (eight nurses), each with different roles and specialisations in cancer care coordination ( figure 3, online supplemental supp-table F).Figure 3Similarities and differences among cancer care coordination nurses (nurse typology): the EPOCK research project.Complex care cancer pathway nurse coordinators Complex pathway nurses were primarily recruited through national initiatives by the French National Cancer Institute and Ministry of Health. Most worked in public healthcare facilities with significant cancer activities, often in cross-departmental roles (10 out of 11). In smaller cancer-focused centres, they managed all specialties, while in larger centres, their efforts were directed at patients with high clinical and social complexity.All of their activities were fully aligned with the care coordination reference framework,46 with an emphasis on ‘multidimensional’ patient needs assessment and ‘external’ coordination requiring strong organisational and relational skills. Beyond this, they often provided emotional support, participated in research and contributed to teaching.Despite the unanimously perceived ambiguity in their roles reflected by higher ambiguity and role tension scores, lower perceived organisational support (online supplemental supp-table F), and heavier workloads—patients and relatives most often identified these nurses as their main source of support (75% and 88% for pathway nurses, vs 43% and 67% for treatment nurses, respectively).Nurses specialised in cancer treatment Treatment nurses were primarily based in cancer private centres and single units, focusing on safe treatment administration, patient education on treatments and managing treatment-related toxicities, often for emerging cancer therapies. Their work, mostly internal to centres, required advanced oncology technical skills but was less aligned with care organisation activities in the reference framework (eg, no holistic evaluations, navigation or routine coordination with primary care). They instead engaged in activities like patient education groups and unregulated delegated prescribing.They all reported being easily able to handle medical issues but faced significant challenges with more complex issues (social and psychological issues, etc). In some centres, situations of greater complexity could be referred to complex pathway nurse coordinators.Patients reported less relational support from treatment nurses (43%) compared with pathway (75%) and polyvalent (77%) nurses. These nurses experienced clearer roles, less ambiguity, higher perceived effectiveness and better organisational support but had the lowest work engagement scores.Polyvalent nurses Polyvalent nurses, mainly in non-cancer-specific centres, had the most experience (median 9 years vs 3–4 for pathway and treatment nurses) and often worked part-time, combining coordination roles with technical nursing tasks like infusions and chemotherapy. Their roles were often funded by the French Cancer Nursing Support Program 65 and focused on internal coordination for socially vulnerable patients (higher median EPICES scores than patients with other nursing profile), with limited community professional contact (17% vs 40% for pathway nurses).Their part-time status led to partial alignment with the reference framework and minimal individual patient follow-up. Balancing multiple responsibilities, they prioritised technical care over coordination, which was often deferred. Some also engaged in meso-level coordination and oncology quality projects linked to the 3C (French Care Coordination Centre). Additionally, they performed extra technical tasks beyond the reference framework.Discussion General findings This mixed-methods study enabled the modelling of hospital-based coordination nurse interventions, focusing primarily on their missions and activities, as well as their working context and required competencies. It also identified a three-category nursing taxonomy: ‘complex pathway’ nurses, who coordinated internal and external care for highly complex cases; ‘treatment specialist’ nurses, typically based in dedicated care units, managing cancer treatment side effects; and nurses in ‘polyvalent’ roles, often unnamed positions, frequently part-time, balancing internal coordination with direct nursing care. Only the ‘complex pathway’ nurses, whose activities fully aligned with the reference framework for care coordination, 46 engaged in comprehensive care coordination. Consequently, this category closely corresponds to the reference model for the hospital-based cancer care coordination nurse. According to our modelling, hospital-based coordination nurses in the reference category carried out full-time internal and external coordination activities, requiring strong interpersonal skills, including active listening, holistic needs assessment and support. Despite operating within unclear mission boundaries, facing role conflicts and receiving uneven organisational support—which often contributed to a sense of limited recognition—they described their cross-functional roles as rewarding, owing to the autonomy, expertise and career opportunities these positions provided.Positioning our findings in an international context To our knowledge, this is the first evidence-based oncology micro practice model that has been called by several authors, 10 12 64 66 enabling patient-centred care coordination regardless of cancer type, care phase or healthcare institution status (public, private or exclusively oncology-based).5 12 Our dataset examines the specificity of micro-level cancer care coordination activities, clarifying the boundaries of roles and responsibilities for each hospital-based nurse involved in oncology care coordination, detailing all the dimensions and components of their interventions in terms of context, structure, process and perceived benefits.Our model closely aligns with the patient navigation models,67 particularly the Oncology Nurse Navigation (ONN) care model, which emphasises coordination as a central role.68 Common activities include ‘assessing needs’, ‘referring to support services’, ‘identifying care barriers’, ‘collaborating with internal and external professionals’ and ‘shared decision-making’.68 However, tasks we considered ‘non-specific’ to coordination in the reference framework, such as scheduling, arranging medical transport, preparing for multidisciplinary medical meetings, discharge planning and supporting clinical research (identifying candidates for molecular testing, promoting awareness of clinical trials) might be included in ONNs role.68 ONN also covers cancer screening, primary prevention and end-of-life care, while our model focuses on diagnosis, treatment, survivorship, advanced/metastatic cancer and secondary/tertiary prevention phases, which we consider to be more specific for these hospital-based nurses. Unlike the APANCO model, which distinguishes between microlevel patient coordination and meso-level professional coordination, we consider all coordination activities as microlevel actions.69 As suggested by Cantrill et al,67 navigation models developed since Freeman et al (ONN, pivot nurse in oncology interchangeable with ONN, cancer nurse coordinator)68–71 share a common core to evaluate care coordination activities, termed the ‘value’ of navigation programme.72 Our model specifies these activities, distinguishing them from required competencies, tools and outcomes, while excluding activities performed by other professions (patient education, medication management, psychological support). In their latest review, Duan-Porter et al recommend for future research to better define the ‘core’ intervention components and describe local adaptations, particularly in multi-site studies, which is in line with EPOCK’s goals.28 The current literature outlines the importance of studying organisational contexts in care coordination interventions,73 which was achieved for the first time by the EPOCK model using internationally validated scales.Similar to other authors, we highlighted the importance of ‘relational’ alongside ‘clinical’ coordination for patients44 74 75 and professionals.76 77 Nurse coordinators require strong communication and clinical management skills to build trust,66 78 with patient interactions requiring empathy and adaptability,66 68 70 78 79 and professional collaboration relying on teamwork and negotiation.23 24 80–82 Guiding patients through the fragmented healthcare system has thus become a key dimension of care coordination, referred to as its ‘integrative function’.13 83 84 ‘Complex pathway’ and ‘polyvalent’ nurses faced greater demands for interpersonal and organisational skills than ‘treatment’ nurses, who focused on oncology expertise for symptom management. In our study, nurses sought more ‘guided’ autonomy, echoing findings that excessive autonomy can lead to isolation and a heavier perceived burden of responsibilities.85–87 Effective managerial support improves integration into multidisciplinary teams, reduces isolation and helps to prevent burnout among oncology nurses.80 88 89 Despite its importance, few studies focus on enhancing managerial support for nurse coordinators,85 90–93 warranting further exploration of disruptive managerial interventions for nurse coordinators in cross-functional roles.80 Furthermore, many ‘treatment nurses’ prioritised medical problem-solving over emotional support, as noted by patients and caregivers in our study and supported by some other authors.43 44 94 Their roles resemble clinical nurse specialists or advanced practice nurses, with autonomy in clinical decisions, consultations, prescribing and reviewing test results.64 90 95 Strengths and limitations To our knowledge, this innovative practice model is the first developed by a transdisciplinary scientific team (Rosenfield’s taxonomy level 3) 96 through an integrative,62 evidence-based mixed analysis45 47 of a very large dataset with diverse participant profiles. We aimed to capture the full range of hospital-based cancer care coordination nurses at the national level, focusing solely on those performing coordination functions for measurement reliability. Additional samples included stakeholders from all stages of cancer care, such as patients, families, caregivers and professional partners, ensuring diversity. However, results apply only to hospital-based nurses; they cannot be extrapolated to nurses working outside. A parallel regional study included extra-hospital cancer nurse coordinators and provided complementary information on this specific population.97 Moreover, despite a carefully designed selection of patients, caregivers and professional partners, measurements may have been subject to selection bias favouring extreme cases (least impaired, most satisfied), and results regarding the observed effects of the intervention delivered by care coordination nurse should be interpreted cautiously. The most appropriate study design to evaluate the effects of care coordination interventions is an experimental design, which will ensure the comparability of nurse coordinators’ groups, particularly regarding their socioprofessional characteristics, and specifically in relation to the patients they follow, their caregivers and the partners involved.Implications and perspectives This model is designed to optimise professional deployment by standardising job descriptions and developing more grounded, harmonised educational materials for nurse training. 98 Improving consistency in oncology nursing roles can also enhance funding distribution.12 98 99 Finer role delineation could offer clearer career progression pathways, which are essential for retaining experienced nurses and preventing current severe staffing shortages in oncology nursing.80 98 100 To transfer these findings, we collaborated with French policymakers in a national workshop to define the role of cancer care pathway nurse coordinators, draw up a job description and specify the minimum elements of managerial support by national expert consensus. The workshop has led to official recognition of the complex pathway nurse coordinator role, as advocated by recent international publications.80 Furthermore, our model aims to support the development of standardised coordination interventions, deploy them to assess their impact, based on a robust framework able to face current methodological challenges, particularly the ones about the strength of the causal relationship between the intervention and the measured effects.6 12 The expected outcomes of interest could encompass multiple dimensions, such as the quality of patient care process—patient outcomes, including satisfaction, quality of life, autonomy and health literacy; outcomes for relatives; impacts on healthcare professionals, including quality of working life and professional engagement; and at the system level. Finally, this model could also contribute to evaluating microlevel integrated care models for chronic diseases in oncology, such as the SELFIE framework or the Rainbow Model of Integrated Care (RMIC) programme.101 102",
  "title": "Evidence-based modelling and taxonomy of hospital-based cancer care coordination nurses’ roles and boundaries: an iterative multiphase convergent mixed study",
  "uid": "a98089b6-1c5b-5080-bcd2-14593940f4dd"
}