SENTIREC - The sentinel node mapping in women with cervical cancer study - Patient-reported early lymphedema and its impact on quality of life.

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 early-stage cervical cancer from March 2017-January 2021 to undergo radical surgery including SLN mapping. Women with tumors >20 mm underwent completion PL. The incidence and severity of early lymphedema and its influence on QoL were evaluated using validated patient-reported outcome measures before surgery and three months postoperative. We investigated changes over time using linear regression. RESULTS: Two hundred of 245 (81.6%) included women completed questionnaires at baseline and three months postoperatively. The incidence of early lymphedema was 5.6% (95% CI 2.1-11.8%) and 32.3% (95% CI 22.9-42.7%) in women who underwent SLN mapping only and SLN + PL, respectively. Lymphedema symptoms in the legs, genitals, and groins increased in both groups postoperatively but three times more in women who underwent PL. Lymphedema symptoms after SLN + PL significantly impaired physical performance (p = 0.001) and appearance (p = 0.007). Reporting lymphedema was significantly associated with impaired body image, physical-, role-, and social functioning, and a high level of fatigue. CONCLUSIONS: SLN mapping alone carries a low risk of lymphedema in women undergoing surgery for early-stage cervical cancer. In contrast, completion PL is associated with a high incidence of early lymphedema. Reporting lymphedema is associated with significant impairment of several physical, psychological, and social aspects of QoL.

Varying severities of symptoms underline the relevance of personalized follow-up care in breast cancer survivors: latent class cluster analyses in a cross-sectional cohort.

PURPOSE: Insights into the severity of co-existing symptoms can help in identifying breast cancer survivors in need of symptom management. We aimed to identify subgroups of breast cancer survivors based on patterns of symptom severity, and characteristics associated with these subgroups. METHODS: We selected surgically treated stage I-III breast cancer survivors 1-5 years post-diagnosis from the Netherlands Cancer Registry (N = 876). We assessed experienced severity of fatigue, nausea, pain, dyspnea, insomnia, appetite, constipation, diarrhea, and emotional and cognitive symptoms through the EORTC-QLQ-C30 Quality of Life Questionnaire on a scale of 0-100. We determined subgroups of survivors using latent class cluster analyses (LCA) based on severity of co-existing symptoms and compared their mean severity to the age-matched female reference population to interpret clinical relevance. We assessed subgroup characteristics by multinomial logistic regression analyses. RESULTS: From 404 respondents (46%), three subgroups of survivors with distinct symptom severity were identified: low severity (n = 116, 28.7%), intermediate severity (n = 224, 55.4%), and high severity (n = 59, 14.6%). The low subgroup reported lower symptom severity than the general population; the intermediate subgroup reported a similar symptom severity, although scores for fatigue, insomnia, and cognitive symptoms were worse (small-medium clinical relevance). The high subgroup had worse symptom severity (medium-large clinical relevance). Compared to the intermediate subgroup, one (RRR: 2.75; CI: 1.22-6.19; p = 0.015) or more (RRR: 9.19; CI: 3.70-22.8; p = < 0.001) comorbidities were significantly associated with the high subgroup. We found no associated treatment characteristics. CONCLUSION: We identified distinct subgroups of breast cancer survivors based on symptom severity, underlining the relevance of further exploring personalized follow-up strategies.

Cancer-related psychosocial factors and self-reported changes in lifestyle among gynecological cancer survivors: cross-sectional analysis of PROFILES registry data.

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 initial treatment among gynecological cancer survivors. METHODS: Cross-sectional data from the ROGY Care study were used, including endometrial and ovarian cancer patients treated with curative intent. The Impact of Cancer Scale (IOCv2) was used to assess cancer-related psychosocial factors. Self-reported changes in nutrients/food groups and in physical activity post-diagnosis were classified into change groups (less/equal/more). Multivariable logistic regression models were used to assess associations. RESULTS: Data from 229 cancer survivors (59% endometrial, 41% ovarian, mean age 66 ± 9.5, 70% tumor stage I) were analyzed. In total, 20% reported to eat healthier from diagnosis up to 18 months after initial treatment, 17% reported less physical activity and 20% more physical activity. Health awareness (OR 2.79, 95% CI: 1.38; 5.65), body change concerns (OR 3.04 95% CI: 1.71; 5.39), life interferences (OR 4.88 95% 2.29; 10.38) and worry (OR 2.62, 95% CI: 1.42; 4.85) were significantly associated with less physical activity up to 18 months after initial treatment whereby gastrointestinal symptoms were an important confounder. CONCLUSION(S): This study underlines the need to raise awareness of the benefits of a healthy lifestyle and to provide tailored lifestyle advice, taking into account survivors' health awareness, body change concerns, life interferences, worry and gastrointestinal symptoms, in order to improve health behavior among gynecological cancer survivors. TRIAL REGISTRATION: http://clinicaltrials.gov Identifier: NCT01185626, August 20, 2010.

Symptom clusters in 1330 survivors of 7 cancer types from the PROFILES registry: A network analysis.

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 regimens, and short-term and long-term survivors. METHODS: This study used cross-sectional survey data, collected between 2008 and 2018, from the population-based Patient Reported Outcomes Following Initial Treatment and Long Term Evaluation of Survivorship registry, which included survivors of 7 cancer types (colorectal cancer, breast cancer, ovarian cancer, thyroid cancer, chronic lymphocytic leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma). Regularized partial correlation network analysis was used to explore and visualize the associations between self-reported symptoms (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire) and the centrality of these symptoms in the network (ie, how strongly a symptom was connected to other symptoms) for the total sample and for subgroups separately. RESULTS: In the total sample (n = 1330), fatigue was the most central symptom in the network with moderate direct relationships with emotional symptoms, cognitive symptoms, appetite loss, dyspnea, and pain. These relationships persisted after adjustments for sociodemographic and clinical characteristics. Connections between fatigue and emotional symptoms, appetite loss, dyspnea, and pain were consistently found across all cancer types (190 for each), treatment regimens, and short-term and long-term survivors. CONCLUSIONS: In a heterogenous sample of cancer survivors, fatigue was consistently the most central symptom in all networks. Although longitudinal data are needed to build a case for the causal nature of these symptoms, cancer survivorship rehabilitation programs could focus on fatigue to reduce the overall symptom burden.

Self-management and adherence to recommended follow-up after gynaecological cancer: results from the international InCHARGE study.

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-sectional study, we recruited gynecological cancer survivors 1-5 years after completion of treatment. Information on follow-up visits, use of healthcare resources, self-management (measured by the Health Education Impact Questionnaire), clinical characteristics, and demographics were obtained by validated questionnaires. Participants were categorized as adherent if they attended the number of follow-up visits recommended by national guidelines, non-adherent if they had fewer visits than recommended, or over-users if they had more visits than recommended. RESULTS: Of 4455 invited survivors, 2428 (55%) returned the questionnaires, and 911 survivors were included in the analyses. Survivors with high self-management most frequently adhered to recommended follow-up. Non-adherent survivors showed lower self-management in the health-directed activity domain (OR 1.54, 95% CI 1.03 to 2.32) than adherent survivors. No other associations between self-management and follow-up adherence were revealed. Non-adherent survivors tended to have endometrial cancer, surgical treatment only, be older, and be Danish residents. Over-users reported more follow-up visits and also used additional healthcare services more frequently than adherent survivors. CONCLUSION: Low self-management appears to reduce the likelihood of adherence to national guidelines for gynecological cancer follow-up. Focusing on patient education for survivors at risk of low self-management to ensure adherence to recommended follow-up may improve personalization of follow-up.

Patterns and predictors of cancer-related fatigue in ovarian and endometrial cancers: 1-year longitudinal study.

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 prospective cohort study of women with newly diagnosed ovarian (n = 81) or endometrial cancer (n = 181) that did not progress or recur within 1 year of treatment completion. Symptoms of fatigue, depression, and anxiety were assessed after surgery and 6 and 12 months after treatment completion with the Fatigue Assessment Scale and the Hospital Anxiety and Depression Scale. Patients' fatigue scores over time were classified (scores of 22-50, clinically significant; scores of 10-21, not clinically significant). Logistic regression models were fit to examine associations between fatigue and patient characteristics. RESULTS: Among 262 participants, 48% reported clinically significant fatigue after surgery. One year later, 39% reported fatigue. There were 6 patterns over time: always low (37%), always high (25%), high then resolves (18%), new onset (10%), fluctuating (6%), and incidental (5%). Patients with fatigue after surgery were more likely to report fatigue at 12 months in comparison with others (odds ratio [OR], 6.08; 95% confidence interval [CI], 2.82-13.11; P < .001). Patients with depressive symptoms also had higher odds of fatigue (OR, 3.36; 95% CI, 1.08-10.65; P = .039), although only one-third of fatigued patients reported depressive symptoms. CONCLUSION: Nearly half of women with gynecologic cancers had clinically significant fatigue after surgery, whereas 44% and 39% had fatigue 6 months and 1 year later; this suggests that spontaneous regression of symptoms is relatively rare. Women who reported fatigue, depressive symptoms, or 2 or more medical comorbidities had higher odds of reporting fatigue 1 year later. Future studies should test scalable interventions to improve fatigue in women with gynecologic cancers.

The EORTC QLQ-C30 Summary Score as Prognostic Factor for Survival of Patients with Cancer in the "Real-World": Results from the Population-Based PROFILES Registry.

BACKGROUND: Health-related quality of life (HRQoL) has been shown to be a prognostic factor for cancer survival in randomized clinical trials and observational "real-world" cohort studies; however, it remains unclear which HRQoL domains are the best prognosticators. The primary aims of this population-based, observational study were to (a) investigate the association between the novel European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core30 (QLQ-C30) summary score and all-cause mortality, adjusting for the more traditional sociodemographic and clinical prognostic factors; and (b) compare the prognostic value of the QLQ-C30 summary score with the global quality of life (QoL) and physical functioning scales of the QLQ-C30. MATERIALS AND METHODS: Between 2008 and 2015, patients with cancer (12 tumor types) were invited to participate in PROFILES disease-specific registry studies (response rate, 69%). In this secondary analysis of 6,895 patients, multivariate Cox proportional hazard regression models were used to investigate the association between the QLQ-C30 scores and all-cause mortality. RESULTS: In the overall Cox regression model including sociodemographic and clinical variables, the QLQ-C30 summary score was associated significantly with all-cause mortality (hazard ratio [HR], 0.77; 99% confidence interval [CI], 0.71-0.82). In stratified analyses, significant associations between the summary score and all-cause mortality were observed for colon, rectal, and prostate cancer, non-Hodgkin lymphoma, chronic lymphocytic leukemia, and multiple myeloma. The QLQ-C30 summary score had a stronger association with all-cause mortality than the global QoL scale (HR, 0.82; 99% CI, 0.77-0.86) or the physical functioning scale (HR, 0.81; 95% CI, 0.77-0.85). CONCLUSION: In a real-world setting, the QLQ-C30 summary score has a strong prognostic value for overall survival for a number of populations of patients with cancer above and beyond that provided by clinical and sociodemographic variables. The QLQ-C30 summary score appears to have more prognostic value than the global QoL, physical functioning, or any other scale within the QLQ-C30. IMPLICATIONS FOR PRACTICE: The finding that health-related quality of life provides distinct prognostic information beyond known sociodemographic and clinical measures, not only around cancer diagnosis (baseline) but also at follow-up, has implications for clinical practice. Implementation of cancer survivorship monitoring systems for ongoing surveillance may improve post-treatment rehabilitation that leads to better outcomes.

Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy.

Purpose: Epithelioid hemangioendothelioma (EHE) is an ultra-rare vascular sarcoma with unique clinical features. EHE is characterized by an unpredictable, often protracted, clinical course and highly variable clinical presentation. Due to difficulty recruiting ultra-rare cancer patients, health-related quality of life (HRQoL) of EHE patients has not yet been studied. The aim of this study was to assess EHE symptom burden and its impact on HRQoL and psychological distress.Methods: The study was initiated after EHE patients' foundations approached our research group to study HRQoL. Patients were recruited from the international EHE Facebook group from May through October 2018. Data were collected using the online PROFILES registry. Latent class cluster analysis was performed to identify groups based on frequently reported symptoms. Differences in HRQoL (EORTC-QLQ-C30) and psychological distress (Hospital Anxiety and Depression Scale) between symptom-based clusters were examined.Results: Among 115 EHE patients from 20 countries, three clusters were identified, with low-, intermediate- and high-symptom burden, respectively. Highly symptomatic patients (33%) had clinically relevantly lower scores on HRQoL compared to the other two groups (p < 0.001). These patients suffered mostly from pain, insomnia and fatigue. Symptom burden significantly correlated with reduced daily functioning and high levels of psychological distress. Only for highly symptomatic patients, HRQoL and symptom levels were worse compared to healthy individuals.Conclusion: For the first time, we studied HRQoL in a large international cohort of ultra-rare cancer patients with distinct clinical characteristics, enabled by collaboration with patients and use of social media. We showed a considerable number of EHE patients were highly symptomatic, with a significant impact on HRQoL and psychological distress.

Patients' information coping styles influence the benefit of a survivorship care plan in the ROGY Care Trial: New insights for tailored delivery.

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 Oncological Gynecology (ROGY) Care Trial, 12 hospitals in the Netherlands were randomized to deliver SCP care or usual care. All patients with newly diagnosed endometrial and ovarian cancer in the SCP care arm received an SCP that was generated automatically by their oncology provider through the web-based ROGY registration system. Outcomes (satisfaction with information provision and care, illness perceptions, and health care use) were measured directly after initial treatment and after 6, 12, and 24 months. Information coping style was measured at 12 months after initial treatment. RESULTS: Among patients who had a monitoring coping style (N = 123), those in the SCP care arm reported higher satisfaction with information provision (mean score: 73.9 vs 63.9, respectively; P = .04) and care (mean score: 74.5 vs 69.2, respectively; P = .03) compared with those in the usual care arm. Among patients who had a blunting coping style (N = 102), those in the SCP care arm reported a higher impact of the disease on life (mean score: 5.0 vs 4.5, respectively; P = .02) and a higher emotional impact of the disease (mean score: 5.4 vs 4.2, respectively; P = .01) compared with those in the usual care arm. CONCLUSIONS: SCPs may be beneficial for patients who desire information about their disease, whereas SCPs may be less beneficial for patients who avoid medical information, suggesting a need for tailored SCP delivery to improve survivorship care.

Changes in health-related quality of life among gynecologic cancer survivors during the two years after initial treatment: a longitudinal analysis.

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, and to assess clinical and sociodemographic characteristics associated with those changes. Methods: This prospective population-based cohort study includes longitudinal data of endometrial (N = 221) and ovarian (N = 174) cancer survivors diagnosed between 2011 and 2014. The EORTC QLQ-C30 functioning scales were used to assess HRQoL after initial treatment and after 6, 12 and 24 months. Clinical (stage, treatment and comorbidities) and sociodemographic (age, marital status and socio-economic status) characteristics were obtained from the Netherlands Cancer Registry and through self-administered questionnaires. Linear mixed models were used to assess changes in HRQoL over time and characteristics associated with these changes. Results: Among both endometrial and ovarian cancer patients, HRQoL improved within the first 6 months after initial treatment. Changes in HRQoL were mainly associated with clinical characteristics including comorbidities, treatment and tumor stage, and to a lesser extent with sociodemographic characteristics such as socioeconomic status. However, these associations varied per tumor type. Endometrial cancer survivors, who received radiotherapy and had no comorbidities, reported greater improvements in some HRQoL scales over time. Ovarian cancer patients who received chemotherapy and with advanced tumor stages reported poorer functioning during treatment. Most functioning domains (global health, physical and role functioning) recovered to levels of patients without chemotherapy or with early-stage disease after 12 months, but cognitive and social functioning remained impaired. Conclusion: Some subgroups of patients, including those with multiple comorbidities, with an advanced tumor stage and who received chemotherapy, may be in need of additional support as they are less likely to show improvements in HRQoL over time.

The role of positive psychological changes in anxiety and depression of patients with ovarian tumors and their partners: an observational study from the population-based PROFILES registry.

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 diagnosed with an ovarian tumor and their partners. The second aim was to explore the mutual associations of patients' and partners' posttraumatic growth and their anxiety and depressive symptoms. METHODS: Participants included 130 Dutch couples of which one partner was diagnosed with a borderline ovarian tumor or ovarian cancer between 2000 and 2010, as registered by the Netherlands Cancer Registry. In September 2011, a questionnaire was sent including the Hospital Anxiety and Depression Scale (anxiety and depression) and Cancer Survivors (Partners) Unmet Needs measure (positive psychological changes). RESULTS: A one-way multivariate analysis of variance showed that patients reported higher anxiety than partners, without differences in depression. Contrasting to our expectations, an actor-partner interdependence model revealed no mutual dyadic associations between positive psychological changes and anxiety or depressive symptoms. CONCLUSIONS: Based on these findings, positive psychological change seems to be an independent construct unrelated to anxiety or depression in couples diagnosed with ovarian tumors. Still, as ovarian tumor patients and partners suffer from high anxiety and depression, further research investigating how these feelings can be reduced in couples dealing with an ovarian tumor is necessary.

Optimistic, realistic, and pessimistic illness perceptions; quality of life; and survival among 2457 cancer survivors: the population-based PROFILES registry.

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 IPs and prognosis; and 2) assess the health-related quality of life (HRQOL) and survival associated with these subgroups. METHODS: The authors used survey data from the population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry, which were collected between 2008 and 2015 and included 2457 cancer survivors who were <5 years after their cancer diagnosis (colon, rectal, prostate, endometrial, or ovarian cancer or non-Hodgkin lymphoma). Clinical and survival data were collected through the Netherlands Cancer Registry. Subgroups were defined by IPs (Brief Illness Perception Questionnaire) and prognosis (conditional 5-year relative survival) into survivors with 1) IPs consistent with prognosis ("realistic"); 2) less threatening IPs than expected based on prognosis ("optimistic"); and 3) more threatening IPs than expected based on prognosis ("pessimistic"). RESULTS: Compared with survivors with realistic IPs (1230 survivors), those with optimistic IPs (582 survivors) were found to have a higher HRQOL (P < .01 on all European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 [EORTC QLQ-C30] scales) and a lower all-cause mortality (hazard ratio, 0.72; P < .01), whereas those with pessimistic IPs (645 survivors) had a lower HRQOL (P < .01 on all scales) and a higher all-cause mortality (hazard ratio, 1.52; P < .01). CONCLUSIONS: Optimistic IPs are associated with better HRQOL and survival, even if they may appear to be unrealistic with respect to cancer survivors' prognosis. Survivors with pessimistic IPs appear to have the worst outcomes. Therefore, efforts are needed to provide better support to patients with pessimistic IPs to improve their outcomes. Cancer 2018;124:3609-17. © The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Cluster Analysis Demonstrates the Need to Individualize Care for Cancer Survivors.

BACKGROUND: In efforts to inform clinical screening and development of survivorship care services, we sought to characterize patterns of health care needs among cancer survivors by (a) identifying and characterizing subgroups based on self-reported health care needs and (b) assessing sociodemographic, clinical, and psychosocial factors associated with these subgroups. METHODS: We conducted a cross-sectional self-administered survey among patients presenting for routine follow-up care for early-stage cancer at our academic medical center. Latent class cluster analysis was used to identify clusters of survivors based on survivorship care needs within seven domains. Multiple logistic regression analyses were used to assess factors associated with these clusters. RESULTS: Among 292 respondents, the highest unmet needs were related to the domains of side effects (53%), self-care (51%), and emotional coping (43%). Our analysis identified four clusters of survivors: (a) low needs (n = 123, 42%), (b) mainly physical needs (n = 46, 16%), (c) mainly psychological needs (n = 57, 20%), and (d) both physical and psychological needs (n = 66, 23%). Compared with cluster 1, those in clusters 2, 3, and 4 were younger (p < .03), those in clusters 3 and 4 had higher levels of psychological distress (p < .05), and those in clusters 2 and 4 reported higher levels of fatigue (p < .05). CONCLUSION: Unmet needs among cancer survivors are prevalent; however, a substantial group of survivors report low or no health care needs. The wide variation in health care needs among cancer survivors suggests a need to screen all patients, followed by tailored interventions in clinical care delivery and research. IMPLICATIONS FOR PRACTICE: The characterization of patients as having few needs, predominantly physical needs, predominantly psychological needs, or substantial needs that are both physical and psychological provides a productive framework for clinical care of cancer survivors and to guide further research in this field. Further research is needed to define the tailored information and services appropriate for each group of patients and to define optimal screening tools to efficiently identify the needs of individuals in oncology practice.

Recurrent Cancer Is Associated With Dissatisfaction With Care-A Longitudinal Analysis Among Ovarian and Endometrial Cancer Patients.

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 longitudinal analysis from the ROGY Care trial, conducted between 2011 and 2014, including patients with endometrial (n = 215) and ovarian (n = 149) cancer. Patients were invited to complete questionnaires directly after initial treatment and after 6, 12, and 24 months. Satisfaction with information provision and care, illness perceptions, anxiety, and depression were compared before and after the recurrence. Linear mixed-model analyses were conducted to assess the differences in outcomes of patients with a recurrence compared with patients without a recurrence. RESULTS: During 2-year follow-up, 25 patients with endometrial cancer (12%) and 64 patients with ovarian cancer (43%) had recurrent disease, of whom 9 endometrial and 26 ovarian cancer patients completed at least 1 questionnaire after their recurrence was determined. Patients reported lower satisfaction with care after the diagnosis of a recurrence (doctor interpersonal skills, exchange of information between caregivers, and general satisfaction with care) compared with patients without recurrence. In addition, patients reported lower health-related quality of life, more anxiety and depression, and more threatening illness perceptions after diagnosis of a recurrence. CONCLUSIONS: After diagnosis of recurrent disease, endometrial and ovarian cancer patients were less satisfied with care compared with patients without a recurrence. Our findings suggest that patients with recurrent cancer are in need of care that is better tailored to their needs.

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.

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 research among cancer survivors by comparing socio-demographic and clinical characteristics, and survival of participants and non-participants in cancer survivors invited for questionnaire research through the PROFILES registry. METHODS: Between 2008 and 2015, cancer survivors with different cancer diagnoses (N = 14,011) were invited to participate in PROFILES registry studies, of whom 69% (N = 9684) participated. Socio-demographic and clinical characteristics and survival data, collected through the Netherlands Cancer Registry, were associated with participation versus non-participation in multivariable logistic regression analyses and cox proportional hazard regression models, respectively. RESULTS: Participants had a significantly better survival compared to non-participants (HR = 1.47, P < .01). Participation was associated with male gender, being 60-70 years old, high socio-economic status, receiving any treatment, receiving radiotherapy, having no comorbidities, and a cancer diagnosis 2-3 years before invitation. Sensitivity analysis demonstrates that the health-related quality of life (HRQoL) might be up to 1.3 points lower (scale 0-100) using hot deck imputation compared to non-imputed participant data. CONCLUSIONS: Cancer survivors not participating in observational PROs research significantly differ from participants, with respect to socio-demographic and clinical characteristics, and survival. Their HRQoL scores may be systematically lower compared to participants. Therefore, even in PRO studies with relatively high participation rates, observed outcomes may represent the healthier patient with better outcomes.

Survivorship care plans have a negative impact on long-term quality of life and anxiety through more threatening illness perceptions in gynecological cancer patients: the ROGY care trial.

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 assess the direct and indirect effects of SCPs on health-related quality of life (HRQoL) and anxiety and depression, through illness perceptions. METHODS: Twelve hospitals in the South of the Netherlands were randomized to providing 'SCP care' or 'usual care.' Newly diagnosed endometrial and ovarian cancer patients completed questionnaires after initial treatment (endometrial, 221 [75%]; ovarian, 174 [71%]) and after 6, 12, and 24 months. SCPs were automatically generated after initial treatment by the oncology providers through the web-based ROGY. Illness perceptions were measured after initial treatment and HRQoL and anxiety and depression after 6, 12, and 24 months. RESULTS: Structural equation models showed that endometrial cancer patients who experienced more symptoms or concern due to the SCP reported worse social functioning (ß = - 0.82; p = 0.01) and more fatigue, insomnia, pain, and anxiety (ß = 0.58-0.86, p < 0.05) within 12 months after treatment. Ovarian cancer patients who had lower trust that the treatment would cure their disease due to the SCP reported worse emotional functioning 6 months after treatment (ß = 0.27, p = 0.02). CONCLUSIONS: Current results show that SCPs may have negative effects on HRQoL and anxiety in patients who experience more threatening illness perceptions due to the SCP. We should be aware of the potential negative consequences of SCPs. Trial Registration clinicaltrials.gov Identifier: NCT01185626.

Illness perceptions and changes in lifestyle following a gynecological cancer diagnosis: A longitudinal analysis.

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 in this secondary analysis of longitudinal data. Lifestyle outcomes were assessed through self-reported questionnaires after initial treatment and 6, 12, and 18months of follow-up. Illness perceptions were assessed with the Brief Illness Perception Questionnaire (BIPQ). Latent class growth curve analyses were conducted to identify patterns of lifestyle change and linear mixed models using between-subject and within-subject effects to explore the association between BIPQ items and alcohol consumption (glasses/week) and BMI (kg/m2). RESULTS: After initial treatment, 15% (N=57) of the patients smoked, 53% (N=203) drank alcohol, and 60% (N=236) were overweight or obese. Overall, smokers made no considerable changes, but one subgroup of low level smokers reported positive decline. A slight decrease was observed for alcohol consumption among low and moderate level alcohol drinker subgroups, whereas BMI remained stable among endometrial cancer patients and increased for ovarian cancer patients. Moreover, patients with lower trust in their treatment to cure the disease drank more alcohol (ß=0.32 glasses/week [95% CI 0.09; 0.56]). CONCLUSIONS: Change in lifestyle after a gynecological cancer treatment is not self-evident. Moreover, more threatening illness perceptions were not related to a healthier lifestyle. This study underlines the need for lifestyle-promoting activities to facilitate lifestyle improvement among gynecological cancer patients.

Effects of Survivorship Care Plans on patient reported outcomes in ovarian cancer during 2-year follow-up - The ROGY care trial.

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 pragmatic cluster randomized trial, twelve hospitals in the South of the Netherlands were randomized to 'SCP care' or 'usual care'. All newly diagnosed ovarian cancer patients in the 'SCP care' arm received an SCP that was automatically generated by the oncology provider, by clicking a button in the web-based Registrationsystem Oncological GYnecology (ROGY). Ovarian cancer patients (N=174, mean age 63.3, SD=11.4; all stages) completed questionnaires directly after initial treatment and after 6, 12 and 24months. RESULTS: First questionnaires were returned from 61 (67%) ovarian cancer patients in the 'SCP care' arm and 113 (72%) patients in the 'usual care' arm. In the 'SCP care' arm, 66% (N=41) of the patients reported receipt of an SCP. No overall differences were observed between the trial arms on satisfaction with information provision, satisfaction with care or health care utilization. Regarding illness perceptions, patients in the 'SCP care' arm had lower beliefs that the treatment would help to cure their disease (overall, 6.7 vs. 7.5, P<0.01). CONCLUSIONS: SCPs did not increase satisfaction with information provision or care in ovarian cancer patients. Our trial results suggest that ovarian cancer patients may not benefit from an SCP. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01185626.

Cancer survivors' preference for follow-up care providers: a cross-sectional study from the population-based PROFILES-registry.

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 for follow-up care providers, for instance the medical specialist, the oncology nurse or the general practitioner; 2) characteristics associated with these preferences and 3) the preferred care provider to discuss cancer-related problems. MATERIAL AND METHODS: Survivors diagnosed with prostate cancer (N = 535) and melanoma (N = 232) between 2007 and 2013 as registered in The Netherlands Cancer Registry returned a questionnaire (response rate was 71% and 69%, respectively). A latent class cluster model analysis was used to define preferences and a multinomial logistic regression analysis was used to identify survivor-related characteristics associated with these preferences. RESULTS: Of all survivors, 29% reported no preference, 40% reported a preference for the medical specialist, 20% reported a preference for both the medical specialist and the general practitioner and 11% reported a preference for both the medical specialist and the oncology nurse. Survivors who were older, lower/intermediate educated and women were more likely to have a preference for the medical specialist. Lower educated survivors were less likely to have a preference for both the medical specialist and the general practitioner. Overall, survivors prefer to discuss diet, physical fitness and fatigue with the general practitioner, and hereditary and recurrence with the medical specialist. Only a small minority favored to discuss cancer-related problems with the oncology nurse. CONCLUSION: Survivors reported different preferences for follow-up care providers based on age, education level, gender and satisfaction with the general practitioner, showing a need for tailored follow-up care in oncology. The results indicate an urgency to educate patients about transitions in follow-up care.