Nicole Ezendam

Tilburg University and Netherlands Comprehensive Cancer Organisation

PurposeTo assess use of health care following a diagnosis of endometrial, cervical, and ovarian cancer in the Netherlands, Norway, and Denmark. Furthermore, to analyze the association between cancer worry and use of supportive care.Methods An international multicenter cross-sectional questionnaire study was undertaken among female cancer survivors...

Purpose Surgical treatment for vulvar cancer has impact on women’s self-esteem, body image and sexuality. Health Care Professionals experience difficulties in discussing these issues with patients. The aim of this study was to explore the experiences of patients with vulvar cancer regarding sexual changes, and their needs and expectations regarding...

Introduction and hypothesis Among women worldwide, pelvic organ prolapse (POP) is a common problem. There are three different treatment options for POP: pelvic floor muscle therapy, pessary treatment and prolapse surgery. As none of the three treatment options is clearly superior, shared decision making (SDM) is very important. A decision aid (DA)...

Objective: Patients with vaginal, vulvar, penile or anal cancer experience deteriorated psychosocial functioning and decreased Quality of Life (QoL). The aims of this study were to explore (1) the challenges and controversies patients experience in managing vaginal, vulvar, penile or anal cancer; their unmet needs; and how this affects their psych...

To take cancer survivorship research to the next level, it’s important to gain insight in trajectories of changing patient (reported) outcomes and impaired recovery after cancer. This is needed as the number of survivors is increasing and a large proportion is confronted with changing health after treatment. Mechanistic research can facilitate the...

Purpose Obesity is prevalent in gynecological cancer survivors and is associated with impaired health outcomes. Concerns due to cancer and its treatment may impact changes in lifestyle after cancer. This study aimed to assess the association between cancer-related psychosocial factors and changes in physical activity and diet, 18 months after initi...

Purpose Common residual symptoms among survivors of colorectal cancer (CRC) are sleep difficulties and gastrointestinal symptoms. Among patients with various gastrointestinal (inflammatory) diseases, sleep quality has been related to gastrointestinal symptoms. For CRC survivors, this relation is unclear; therefore, we examined the association betwe...

Objective Two-third of colorectal cancer (CRC) survivors are overweight or obese. Psychological distress and low health-related quality of life (HRQoL) may be barriers to improving diet. We aimed to assess associations between psychological distress and HRQoL and the need for dietary support in CRC survivors with overweight or obesity. Methods All...

Purpose In the general population, poor sleep quality and short sleep duration are associated with a higher body mass index (BMI) and waist circumference (WC), and an unhealthy diet. The aim of this study was to assess if the association between sleep quality and duration and BMI, WC, and diet quality also exists among colorectal cancer (CRC) survi...

Objective To evaluate patient-reported incidence and severity of early lymphedema and its impact on quality of life (QoL) after sentinel lymph node (SLN) mapping only and after SLN and pelvic lymphadenectomy (PL) in women undergoing surgery for early-stage cervical cancer. Methods In a national prospective multicenter study, we included women with...

Background With the increasing attention for the role of General Practitioners (GPs) after cancer treatment, it is important to better understand the involvement of GPs following prostate cancer treatment. This study investigates factors associated with GP contact during follow-up of prostate cancer survivors, such as patient, treatment and symptom...

Objectives We prospectively evaluated patient-reported lower limb lymphedema and quality of life (QoL) in women with early-stage cervical cancer undergoing radical surgery with sentinel lymph node (SLN) mapping. Methods In a national multi-institutional study, we included women with early-stage cervical cancer from March 2017-January 2021 to under...

Introduction/Background* The growing number of cancer survivors has led to increased focus on follow-up care. Resent follow-up strategies tend to shift towards personalised care with focus on patient education and self-management. There are limited data on gynaecological cancer survivors’ self-management abilities. This study aimed to assess the re...

Introduction/Background* Sentinel lymph node (SLN) mapping represents a less invasive and more accurate staging technique in women with early-stage cervical cancer, which may reduce or prevent late effects as lymphedema. Despite the increased implementation of SLN mapping, evidence on the potential reduction of lymphedema and its effects on quality...

Background: Research into the clustering of symptoms may improve the understanding of the underlying mechanisms that affect survivors' symptom burden. This study applied network analyses in a balanced sample of cancer survivors to 1) explore the clustering of symptoms and 2) assess differences in symptom clustering between cancer types, treatment...

Background The majority of postmenopausal breast cancer (PMBC) survivors do not adhere to lifestyle recommendations and have excess body weight. In this group, this is associated with poorer health-related quality of life and an increased risk of type II diabetes mellitus, cardiovascular disease, second primary cancers, cancer recurrences, and mort...

Objective To examine healthcare utilisation and adherence to colorectal cancer (CRC) follow-up guidelines. Methods A total of 2450 out of 3025 stage I-III CRC survivors diagnosed between 2000 and 2009 completed the Hospital Anxiety and Depression Scale, SF-12, EORTC QLQ-CR38 and Fatigue Assessment Score questionnaires, in December 2010. Multivaria...

Objective To assess the relationship between self-management skills and adherence to follow-up guidelines among gynecological cancer survivors in the Netherlands, Norway, and Denmark, and to assess the relationship between adherence to follow-up programs and use of additional healthcare services. Methods For this international, multicenter, cross-...

Background Anxiety and depression have a higher prevalence in cancer survivors than in the general population and are associated with lower quality of life, poorer survival and an increased risk of suicide. Anxiety and depression are also highly comorbid among cancer survivors and associated with increased health service use. As such, it is importa...

Objective Our aim was to describe and compare self-reported causal attributions (interpretations of what caused an illness) among cancer survivors and to assess which sociodemographic and clinical characteristics are associated with them. Methods Data from five population-based PROFILES registry samples (i.e. lymphoma (n = 993), multiple myeloma (...

Background: Being obese and having a sedentary lifestyle is associated with impaired health-related quality of life (HRQoL) among cancer survivors. The aim of the present study is to investigate the combined influence of body mass index (BMI) and physical activity on HRQoL in lymphoma survivors. Methods: Lymphoma survivors diagnosed between 1999...

Purpose: Obesity is prevalent in gynecological cancer survivors and is associated with impaired health outcomes. Concerns due to cancer and its treatment may impact changes in lifestyle after cancer. This study aimed to assess the association between cancer-related psychosocial factors and changes in physical activity and diet, 18 months post-diagn...

Objective Despite the positive effects of decision aids (DAs), implementation remains a significant challenge. The aim of the current study was to determine what barriers clinicians experience using a DA for pelvic organ prolapse (POP). Methods This study was conducted with a qualitative descriptive design including in-depth semi-structured interv...

Objective Social support may reduce the amount of psychological distress and increase quality of life. This study assessed whether socio-demographic, personality, and clinical characteristics predict the level of perceived social support in patients with endometrial or ovarian cancer. Methods Patients with endometrial or ovarian cancer who partici...

Importance As the resolution of the coronavirus disease 2019 (COVID-19) crisis is unforeseeable, and/or a second wave of infections may arrive in the fall of 2020, it is important to evaluate patients’ perspectives to learn from this. Objective To assess how Dutch patients with cancer perceive cancer treatment and follow-up care (including experie...

Background: Fatigue is a common and distressing symptom for patients with gynecologic cancers. Few studies have empirically examined whether it spontaneously resolves. This study was aimed at identifying longitudinal patterns of fatigue and predictors of clinically significant fatigue 1 year after treatment completion. Methods: This was a prospe...

Background A better understanding of the impact of age and comorbidity on health-related quality of life (HRQoL) may improve treatment decision-making in patients with endometrial cancer. We investigated whether either age or comorbidity is more strongly associated with changes in HRQoL over time. Methods Endometrial cancer patients (n = 296) were...

Purpose In breast cancer patients, treatment-related health symptoms can occur that may affect their health-related quality of life (HRQoL). This study aimed to determine the impact of health symptoms on HRQoL in breast cancer patients up to 5 years after diagnosis. Methods Females surgically treated for early-stage breast cancer diagnosed between...

Background: The relation between cardiovascular disease (CVD) present at the time of cancer diagnosis and Health-Related Quality of Life (HRQoL) assessed years after cancer diagnosis has – to our knowledge – not been studied. The objective is, therefore, to examine the relation between co-morbid CVD at cancer diagnosis and HRQoL among cancer surviv...

Objective To assess the association between gastro-intestinal (GI) symptoms and health-related quality of life (HRQoL) in ovarian cancer (OC) survivors. Methods Women diagnosed with OC between 2000 and 2010 as registered in the Netherlands cancer registry (n = 348), received a questionnaire on socio-demographic characteristics, HRQoL (EORTC-QLQ-C3...

11603 Background: Fatigue is one of the most common and distressing symptoms reported by patients with gynecological cancers, but few studies have empirically examined whether it resolves without intervention. The aims of this study were to identify: 1) clinically-distinct subgroups of patients with fatigue over time and 2) medical and psychologica...

Objectives According to the Common Sense Model of self-regulation, cancer survivors construct perceptions of their illness as a (mal)adaptive mechanism. These perceptions might impact on health care use. We aimed to explore the association between illness perceptions and health care use in stage I–II endometrial cancer (EC) survivors, and whether t...

Background: Data showing the value of neoadjuvant chemotherapy (nact) followed by interval debulking surgery (ids) in the management of advanced-stage serous endometrial carcinoma (eca) are limited; the aim of the present study was to expand the knowledge about that treatment strategy in patients with advanced eca, including endometrioid eca. Met...

Purpose: Cancer-related fatigue (CRF) is one of the most prevalent symptoms experienced by cancer survivors. However, researchers are only beginning to elucidate the risk factors, underlying mechanism(s), and its association with other outcomes. Research on the association between CRF and mortality is limited. Methods: The study sample comprised 20...

Purpose: It is unknown whether positive psychological changes (e.g., in life perspective, self-perception, and social relationships) after being diagnosed with ovarian cancer can reduce anxiety and depression in patients and their partners. The first aim of the present study was to assess differences in anxiety and depression between patients diag...

Background: The cancer diagnosis is regarded as a stressful life event that is thought to trigger a teachable moment to induce health behavior changes among cancer patients. However, this may also hold true for their partners. We assessed if partners of cancer patients make more health behavior changes compared to persons whose partner remained can...

Objective To assess long-term differences in health-related quality of life (HRQoL) of older ovarian cancer survivors compared to both an age-matched normative population and to younger survivors. In addition, the differential effect of chemotherapy on HRQoL between older and younger survivors was compared. Methods Ovarian cancer survivors (n = 34...

Background: While many cancer survivors experience persistent impairments in health-related quality of life (HRQoL) for extended periods of time, others recover soon after treatment. The aim of this research is to assess changes in health-related quality of life in endometrial and ovarian cancer survivors during two years post initial treatment, an...

Purpose The ‘Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship’ (PROFILES) registry collects patient-reported outcomes (PROs) from short- and long-term cancer survivors in the Netherlands, in a population-based setting. The aim of this analysis is to assess the generalizability of observational PRO resea...

Purpose This qualitative study sought to describe the challenges following treatment and the preferences regarding survivorship care among patients treated for gynecological cancer, their caregivers, and health care providers. Methods Between July and August 2017, in-depth semi-structured interviews regarding survivorship were conducted at a large...

Background In efforts to improve the implementation of survivorship care plans (SCPs), the authors assessed whether the impact of SCPs on patient‐reported outcomes differed between patients with an information‐seeking coping style (monitoring) versus those with an information‐avoiding coping style (blunting). Methods In the Registration System Onc...

Objective: Relatives of cancer patients often play a crucial role in care, while their own needs generally receive scant attention. We investigate those topics on which relatives share information online. Methods: We coded user-generated content written by 185 relatives on a major Dutch cancer site (kanker.nl), into three main categories: ‘Disease’...

Background Threatening illness perceptions (IPs) have been associated with poorer health outcomes. However, to the authors' knowledge, it remains unclear whether threatening IPs that are consistent with disease severity are equally harmful. The aim of the current study was to: 1) identify subgroups of cancer survivors based on IP and prognosis; and...

Purpose: Prior results from the registration system oncological gynecology (ROGY) care trial showed that survivorship care plans (SCPs) increased threatening illness perceptions in gynecological cancer survivors, but it remained unclear whether this would result in poorer physical and psychosocial outcomes. The aim of the current study is to asses...

Introduction: The recommended pathological resection margin (8 mm) for vulvar squamous cell carcinoma (SCC) is broader than for SCC located elsewhere, and does not depend on tumor grade or lesion size. Our aim is to evaluate the resection margin in vulvar SCC in relation to local recurrence, and to determine the impact of other prognostic factors....

Objective To examine the association between satisfaction with perceived information provision during diagnosis and treatment and supportive care needs in ovarian cancer survivors. Methods In 2012, women (n=348) diagnosed with ovarian cancer, as registered between 2000 and 2010 in the Netherlands Cancer Registry, received a questionnaire including...

Background: It has often been hypothesized that the frequency of follow-up visits for patients with early-stage endometrial cancer could be decreased. However, studies evaluating effects of a reduced follow-up schedule among this patient group are lacking. The aim of this study is to assess patient satisfaction and cost-effectiveness of a less fre...

Objective: The primary aim of this study was to assess the longitudinal impact of a recurrence of gynecological cancer on satisfaction with information provision and care. The secondary aim was to assess the impact of a recurrence on illness perceptions, anxiety, and depression and health-related quality of life. Methods: This study is a longitu...

Objective: Chemotherapy-induced peripheral neuropathy (CIPN) presents itself as sensory peripheral neuropathy (SPN) or motor peripheral neuropathy (MPN). Our aim was to examine the course of SPN and MPN, and their impact on health-related quality of life (HRQoL) among ovarian cancer patients. Methods: All newly diagnosed ovarian cancer patients...

Background Laparoscopic hysterectomy (LH) for the treatment of early-stage endometrial carcinoma/cancer (EC) has demonstrated to be safe in several randomized controlled trials. Yet, data on implementation of LH in clinical practice are limited. In the present study, implementation of LH for EC was evaluated in a large oncology network in the Nethe...

Purpose: The purpose of this paper was to assess the impact of survivorship care plan (SCP) provision and moderating factors on health care use following endometrial cancer treatment. Methods: Women newly diagnosed with endometrial cancer were included in a pragmatic cluster randomized trial at 12 hospitals in the Netherlands and were randomly a...

Background: Pre-operative risk stratification based on endometrial sampling determines the extent of surgery for endometrial cancer (EC). We investigated the concordance of pre- and post-operative risk stratifications and the impact of discordance on survival. Methods: Patients diagnosed with EC within the first 6 months of the years 2005-2014 w...

Objectives Compliance of physicians with guidelines has emerged as an important indicator for quality of care. We evaluated compliance of physicians with adjuvant therapy guidelines for endometrial cancer patients in the Netherlands in a population-based cohort over a period of 10 years. Methods Data from all patients diagnosed with endometrial ca...

Objective: This study explores patterns of lifestyle change and whether more threatening illness perceptions are associated with lifestyle changes post-treatment for smoking, alcohol consumption and Body Mass Index (BMI) among gynecological cancer patients. Methods: In total, 395 cancer patients (N=221 endometrial; N=174 ovarian) were included i...

Objective: The aim of this study was to assess the long-term impact of an automatically generated Survivorship Care Plan (SCP) on patient reported outcomes in ovarian cancer in routine clinical practice. Outcome measures included satisfaction with information provision and care, illness perceptions and health care utilization. Methods: In this p...

Information on treatment patterns for ovarian cancer (OC) is limited. The aim of this study was to describe current patterns of chemotherapy and other systemic treatments for OC in the Netherlands and evaluate survival outcomes following subsequent lines of treatment. Data from the Eindhoven Cancer Registry, including on newly diagnosed cancer pati...

Purpose: The aim of this study is to investigate the factors that influence implementation of Survivorship Care Plans (SCPs) in the intervention arm of the ROGY Care trial by (1) assessing the level of SCP receipt in the ROGY Care trial and (2) identifying patient- and provider-level factors that influence SCP receipt. Methods: Between 2011 and...

Objective: Patients with high-grade endometrioid endometrial carcinoma have a high risk of recurrence, even in early stage. To determine the benefit of a more aggressive adjuvant treatment approach, different treatment strategies of 2 referral centers were compared. Materials and methods: Outcome of all patients with International Federation of...

After completing treatment, most patients follow a pre-determined schedule of regular hospital outpatient appointments, which includes clinical examinations, consultations and routine tests. After several years of surveillance, patients are transferred back to primary care. However, there is limited evidence to support the effectiveness and efficie...

Background: To help the growing number of cancer survivors deal with the challenges of cancer survivorship, survivorship care plans (SCPs) were recommended by the Institute of Medicine (IOM) in 2006. The SCP is a formal document that contains both a tailored treatment summary and a follow-up care plan. Since the IOM recommendation 10 years ago, th...

Background: The best practice for the organization of follow-up care in oncology is under debate, due to growing numbers of cancer survivors. Understanding survivors’ preferences for follow-up care is elementary for designing patient-centred care. Based on data from prostate cancer and melanoma survivors, this study aims to identify: 1) preferences...

Background There is wide variation in the application of adjuvant chemotherapy in early-stage epithelial ovarian cancer. Our aim was to assess differences in health-related quality of life (hrqol) between patients with early-stage ovarian cancer who did or did not receive chemotherapy as adjuvant treatment. Methods All patients diagnosed with earl...

Purpose: There is a paucity of research into the relationship between personality and health behaviors among cancer survivors. The aim of this study was to investigate whether Type D personality and its two constituent components, negative affectivity (NA) and social inhibition (SI), are associated with health behaviors, quality of life (QoL) and...