Effect of reduced follow-up care on patient satisfaction with care among patients with endometrial cancer: The ENSURE randomized controlled trial.

BACKGROUND: Evidence on the optimal follow-up schedule after endometrial cancer is lacking. The study aim was to compare satisfaction with care between women who received reduced follow-up care and women who received usual guideline-directed follow-up care for three years after surgery. METHODS: The ENSURE (ENdometrial cancer SURvivors' follow-up carE) trial was a non-inferiority randomized controlled multicenter trial in 42 hospitals in the Netherlands. The intervention arm received reduced follow-up care (4 visits/3 years), while the control group received usual follow-up care (8-11 visits/3 years). Primary outcome was overall satisfaction with care, PSQIII score, over three years follow-up, with a non-inferiority margin of 6. Mixed linear regression, intention-to-treat and per-protocol analyses (presented below) were used. RESULTS: Among 316 women included, overall satisfaction with care was not lower in the reduced follow-up (mean 82; SD = 15) compared with the usual follow-up group (mean 80; SD = 15) group (B = 1.80(-2.09;5.68)). At 6, 12 and 36 months, more women (93/94/90%) in the reduced follow-up group were satisfied with their follow-up schedule than in the usual follow-up group (79/79/82%; p < 0.001; p < 0.001; p = 0.050). CONCLUSIONS AND RELEVANCE: Women with low-risk, early-stage endometrial cancer who received reduced follow-up care were no less satisfied with their care than women receiving usual follow-up care. Compared with usual follow-up, women in the reduced follow-up group had fewer clinical visits and, at the same time, more often reported being satisfied with their follow-up schedule. Findings suggest that reduced follow-up care may be the new standard, but should be tailored to meet additional needs where indicated.

Prevalence and determinants of sleep problems in cancer survivors compared to a normative population: a PROFILES registry study.

PURPOSE: To (1) identify the prevalence of sleep problems in cancer survivors across cancer types and survivorship durations compared to a normative population and (2) determine demographic, clinical, lifestyle, and psychosocial determinants. METHOD: Cancer survivors diagnosed between 2008 and 2015 (N = 6736) and an age- and sex-matched normative cohort (n = 415) completed the single sleep item of the EORTC QLQ-C30: Have you had trouble sleeping? Participants who responded with "quite a bit"/ "very much" were categorized as poor sleepers. A hierarchical multinomial logistic regression was used to identify determinants of sleep problems. RESULT: The prevalence of sleep problems was higher in cancer survivors (17%) compared to the normative population (11%) (p < 0.001), varied across cancer types (10-26%) and did not vary based on survivorship duration. The full model showed that survivors who were female (adjusted odds ratio (AOR) 2.26), overweight (AOR 1.50), had one (AOR 1.25) and ≥ 2 comorbidities (AOR 2.15), were former (AOR 1.30) and current (AOR 1.53) smokers and former alcohol drinkers (AOR 1.73), had a higher level of fatigue (AOR 1.05), anxiety (AOR 1.14), depression (AOR 1.11), and cognitive illness perceptions (AOR 1.02), had a higher odds for sleep problems. Higher education compared to lower education (AOR 0.67), having a partner (AOR 0.69), and obesity compared to normal BMI (AOR 0.86) were protective to sleep problems as well as high physical activity before adjusting for psychological factors (AOR 0.91). CONCLUSION: Modifiable determinants of sleep problems include physical activity, fatigue, anxiety, depression, and illness perception. IMPLICATIONS FOR CANCER SURVIVORS: Sleep problems after cancer deserve clinical attention. They may be improved by addressing modifiable lifestyle factors: increasing physical activity, stop smoking, and reducing alcohol consumption. As fatigue, depression, and illness perception seem related to sleep problems, lifestyle improvements may also improve these outcomes.

Barriers and facilitators for healthy lifestyle and recommendations for counseling in endometrial cancer follow-up care: a qualitative study.

OBJECTIVES: Lifestyle promotion during follow-up consultations may improve long-term health and quality of life in endometrial cancer patients. This study aimed to identify barriers and facilitators to improve and sustain a healthy lifestyle that can be translated to behavioral methods and strategies for lifestyle counseling. METHODS: Endometrial cancer patients from three hospitals were recruited to participate in a semi-structured interview. The data were transcribed and coded. Thematic analysis was applied to identify themes and the behavior change wheel was used as a theoretical framework. Data saturation was confirmed after 18 interviews. RESULTS: Barriers included knowledge gaps as well as lack of motivation and environmental opportunities to engage in health-promoting behavior. Facilitators included applying incremental lifestyle changes, social support, positive reinforcements, and the ability to overcome setbacks. CONCLUSIONS: We propose the following intervention functions: education, persuasion, training, environmental restructuring, and enablement. Suitable behavior change techniques to deliver the intervention functions include information about the consequences of certain behavior, feedback on behavior, credible source, graded tasks, habit formation, restructuring of the environment, prompts/cues, goal setting, action planning, and social support. Including these recommendations in lifestyle counseling could aid lasting lifestyle change since it suits the needs and preferences of patients.

Socioeconomic differences in health-related quality of life among cancer survivors and comparison with a cancer-free population: a PROFILES study.

PURPOSE: This study investigates the association between socioeconomic position (SEP) and health-related quality of life (HRQoL) in a cross-sectional cohort among cancer survivors and compares with cancer-free people. METHODS: Survivors of colorectal, hematological, gynecological, prostate, thyroid cancer, and melanoma diagnosed 2000-2014 were identified in the PROFILES registry, and an age- and sex-matched cancer-free population were identified in the CentER panel. HRQoL, education, and comorbidity were self-reported. Street-level income and clinical factors were obtained from Statistics Netherlands and the Netherlands Cancer Registry. Multivariable logistic regression was used to examine associations of SEP (measured by education and income) and impaired HRQoL among cancer survivors and the cancer-free population, adjusting for age, sex, and time since diagnosis. RESULTS: We included 6693 cancer survivors and 565 cancer-free people. Cancer survivors with low versus medium SEP more frequently reported impaired HRQoL (odds ratio (OR) range for all HRQoL outcomes, 1.06-1.78 for short education and 0.94-1.56 for low income). Survivors with high compared to medium SEP reported impaired HRQoL less frequently (OR range for all HRQoL outcomes, 0.46-0.81 for short education and 0.60-0.84 for low income). The association between SEP and HRQoL was similar in the matched cancer-free population. CONCLUSION: Low SEP was associated with impaired HRQoL in both cancer survivors and cancer-free people. IMPLICATIONS FOR CANCER SURVIVORS: Targeted care is warranted for cancer survivors with impaired HRQoL, especially among those with low SEP.

Barriers to and facilitators of a healthy lifestyle for patients with gynecological cancer: a systematic review of qualitative and quantitative research with healthcare providers and patients.

The prevalence of an unhealthy lifestyle among patients with gynecological cancer is high and associated with increased risk of all-cause mortality. Although lifestyle changes have the potential to improve outcomes, lifestyle counseling is not routinely integrated into standard care. This review explores research on the barriers to and facilitators of both the promotion of healthy lifestyles by healthcare providers (HCPs) and healthy lifestyle changes by patients with gynecological cancer. The Theoretical Domains Framework (TDF) was used to deductively code the identified factors for a comprehensive understanding of the barriers and facilitators. A search across five databases yielded a total of 12,687 unique studies, of which 43 were included in the review. Of these 43, 39 included gynecological cancer patients and only 6 included HCPs. Among the barriers identified for HCPs, most studies evaluated barriers regarding weight loss counseling. Limited knowledge, reluctance to address weight loss, skepticism about the benefits, and workload concerns were commonly reported barriers for HCPs. HCPs will benefit from education and training in lifestyle counseling, including effective communication skills like motivational interviewing. Gynecological cancer patients lacked tools, support, knowledge, and faced mental health issues, environmental constraints, and physical limitations. The review emphasizes the importance of addressing these barriers and utilizing identified facilitators, such as social support, to promote and support healthy lifestyle behaviors on the part of patients and their promotion by HCPs. Future research should focus not only on patients but also on supporting HCPs and implementing necessary changes in current practices.

Self-reported causes of cancer among 6881 survivors with 6 tumour types: results from the PROFILES registry.

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 (n = 156), colorectal (n = 3989), thyroid (n = 306), endometrial (n = 741), prostate cancer (n = 696)) were used. Causal attributions were assessed with a single question. RESULTS: The five most often reported causal attributions combined were unknown (21%), lifestyle (19%), biological (16%), other (14%), and stress (12%). Lymphoma (49%), multiple myeloma (64%), thyroid (55%), and prostate (64%) cancer patients mentioned fixed causes far more often than modifiable or modifiable/fixed. Colorectal (33%, 34%, and 33%) and endometrial (38%, 32%, and 30%) cancer survivors mentioned causes that were fixed, modifiable, or both almost equally often. Colorectal, endometrial, and prostate cancer survivors reported internal causes most often, whereas multiple myeloma survivors more often reported external causes, while lymphoma and thyroid cancer survivors had almost similar rates of internal and external causes. Females, those older, those treated with hormonal therapy, and those diagnosed with prostate cancer were less likely to identify modifiable causes while those diagnosed with stage 2, singles, with ≥2 comorbid conditions, and those with endometrial cancer were more likely to identify modifiable causes. CONCLUSION: In conclusion, this study showed that patients report both internal and external causes of their illness and both fixed and modifiable causes. This differsbetween the various cancer types. IMPLICATIONS FOR CANCER SURVIVORS: Although the exact cause of cancer in individual patients is often unknown, having a well-informed perception of the modifiable causes of one's cancer is valuable since it can possibly help survivors with making behavioural adjustments in cases where this is necessary or possible.

A web-based decision aid for shared decision making in pelvic organ prolapse: the SHADE-POP trial.

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) is known to facilitate patient participation and SDM. We hypothesise that the use of a web-based DA for POP increases patients' satisfaction with information and care and reduces decisional conflict. METHODS: This two-arm, multicentre, cluster randomised controlled trial was performed in women with POP in five different Dutch hospitals. The control group received usual care (UC) and the intervention group received the DA in addition to UC. Primary outcome measures were satisfaction with treatment decision making and satisfaction with information. Analyses were performed using independent sample t tests, Chi-squared tests, and multilevel linear regression analyses. RESULTS: Between the DA group (n=40) and the UC group (n=56) no differences were found concerning patients' satisfaction with information, with scores of 45.63 and 46.14 out of 50 respectively (p=0.67). Also, no differences were found concerning the perceived role in decision making, as patients scored 46.83 in the DA group and 46.41 in the UC group, out of a maximum of 54 (n=0.81). CONCLUSIONS: No differences were found concerning patients' satisfaction with information and treatment decision making between the DA and UC. However, both groups scored high on the questionnaires, which suggests that the decision process is already of high quality.

Identification and Potential Use of Clusters of Patients With Colorectal Cancer and Patients With Prostate Cancer in Clinical Practice: Explorative Mixed Methods Study.

BACKGROUND: A steady increase in colorectal and prostate cancer survivors and patients with these cancers is expected in the upcoming years. As a result of primary cancer treatments, patients have numerous additional complaints, increasing the need for cancer aftercare. However, referrals to appropriate cancer aftercare remain inadequate, despite a wide range of aftercare options. Caregivers and patients often do not know which aftercare is the most appropriate for the individual patient. Since characteristics and complaints of patients within a diagnosis group may differ, predefined patient clusters could provide substantive and efficient support for professionals in the conversation about aftercare. By using advanced data analysis methods, clusters of patients who are different from one another within a diagnosis group can be identified. OBJECTIVE: This study had a 2-fold objective: (1) to identify, visualize, and describe potential patient clusters within the colorectal and prostate cancer population and (2) to explore the potential usability of these clusters in clinical practice. METHODS: First, we used cross-sectional data from patients with colorectal cancer and patients with prostate cancer provided by the population-based PROFILES (Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship) registry, which were originally collected between 2008 and 2012. To identify and visualize different clusters among the 2 patient populations, we conducted cluster analyses by applying the K-means algorithm and multiple-factor analyses. Second, in a qualitative study, we presented the patient clusters to patients with prostate, patients with colorectal cancer, and oncology professionals. To assess the usability of these clusters, we held expert panel group interviews. The interviews were video recorded and transcribed. Three researchers independently performed content-directed data analyses to understand and describe the qualitative data. Quotes illustrate the most important results. RESULTS: We identified 3 patient clusters among colorectal cancer cases (n=3989) and 5 patient clusters among prostate cancer cases (n=696), which were described in tabular form. Patient experts (6/8, 75%) and professional experts (17/20, 85%) recognized the patient clustering based on distinguishing variables. However, the tabular form was evaluated as less applicable in clinical practice. Instead, the experts suggested the development of a conversation tool (eg, decision tree) to guide professionals through the hierarchy of variables. In addition, participants suggested that information about possible aftercare initiatives should be offered and integrated. This would also ensure a good overview and seemed to be a precondition for finding suitable aftercare. CONCLUSIONS: This study demonstrates that a fully data-driven approach can be used to identify distinguishable and recognizable (ie, in routine care) patient clusters in large data sets within cancer populations. Patient clusters can be a source of support for health professionals in the aftercare conversation. These clusters, when integrated into a smart digital conversation and referral tool, might be an opportunity to improve referral to cancer aftercare. TRIAL REGISTRATION: Netherlands Trial Register NL9226; https://trialsearch.who.int/Trial2.aspx?TrialID=NL9226.

Challenges and controversies patients and (health care) professionals experience in managing vaginal, vulvar, penile or anal cancer: The SILENCE study.

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 psychosocial functioning and (2) the gaps health care professionals (HCPs) experience in providing psychosocial support and potential improvements in care. METHODS: Semi-structured interviews with patients with vaginal, vulvar, penile or anal cancer and with HCPs were conducted. All interviews were transcribed verbatim and thematically analysed. RESULTS: Fourteen patients (86% female; mean age 55.5) and 12 HCPs (75% female; mean age 46.4) participated. Four themes were identified: (1) recognisable symptoms but unfamiliar diagnosis, (2) 'double hit' has severe impact on psychosocial functioning, (3) personal and tailored information is important but not guaranteed and (4) all-encompassing care to improve psychosocial functioning and QoL. CONCLUSION: Patients with vaginal, vulvar, penile or anal cancer encounter a lack of awareness and knowledge about their rare cancer type, difficulties regarding communication and long-term changes in body image and sexuality. Awareness of symptoms should be raised and psychosocial care should be offered on a structural basis.

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

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 development of personalized risk-stratified follow-up care and tailored interventions to promote healthy cancer survivorship. We describe how these trajectories can be studied by taking the recently extended Dutch population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry as an example. PROFILES combines longitudinal assessment of patient-reported outcomes with novel, ambulatory and objective measures (eg, activity trackers, blood draws, hair samples, online food diaries, online cognitive tests, weighing scales, online symptoms assessment), and cancer registry and pharmacy databases. Furthermore, we discuss methods to optimize the use of a multidomain data collection-like return of individual results to participants, which may improve not only patient empowerment but also long-term cohort retention. Also, advanced statistical methods are needed to handle high-dimensional longitudinal data (with missing values) and provide insight into trajectories of changing patient-reported outcomes after cancer. Our coded data can be used by academic researchers around the world. Registries like PROFILES, which go beyond boundaries of disciplines and institutions, will contribute to better predictions of who will experience changes and why. This is needed to prevent and mitigate long-term and late effects of cancer treatment and to identify new interventions to promote health.

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.

Physical Activity is Associated with Health Related Quality of Life in Lymphoma Survivors Regardless of Body Mass Index; Results from the Profiles Registry.

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 and 2012 were invited to complete questionnaires about body height and weight, physical activity and HRQoL using the EORTC QLQ-C30. Multivariable analyses were conducted to evaluate the association of BMI and physical activity on HRQoL. RESULTS: 1.339 lymphoma survivors responded (response rate of 72%) of whom 43% had a healthy weight, 41% were overweight and 14% were obese. They spent on average 10 h, on moderate to vigorous physical activity (MVPA) per week. Multivariable linear regression analysis shows that relatively high active survivors reported higher HRQoL scores and less fatigue compared to relatively low active lymphoma survivors, regardless of BMI. CONCLUSION: MVPA was associated with higher HRQoL in lymphoma survivors regardless of BMI. Further studies, are needed to investigate effects of healthy lifestyle changes to improve HRQoL in lymphoma survivors. Research in understanding association of lifestyle factors may guide future support for lymphoma cancer survivors.

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.

The relation between sleep quality, sleep quantity, and gastrointestinal problems among colorectal cancer survivors: result from the PROFILES registry.

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 between sleep quality and quantity with gastrointestinal symptoms among CRC survivors. METHODS: CRC survivors registered in the Netherlands Cancer Registry-Southern Region diagnosed between 2000 and 2009 received a survey on sleep quality and quantity (Pittsburgh Sleep Quality Index) and gastrointestinal symptoms (European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire-Colorectal 38, EORTC QLQ-CR38) in 2014 (≥ 4 years after diagnosis). Secondary cross-sectional data analyses related sleep quality and quantity separately with gastrointestinal symptoms by means of logistic regression analyses. RESULTS: In total, 1233 CRC survivors were included, of which 15% reported poor sleep quality. The least often reported gastrointestinal symptom was pain in the buttocks (15.1%) and most often reported was bloating (29.2%). CRC survivors with poor sleep quality were more likely to report gastrointestinal symptoms (p's < 0.01). Survivors who slept < 6 h were more likely to report symptoms of bloating or flatulence, whereas survivors who slept 6-7 h reported more problems with indigestion. CONCLUSIONS: Worse sleep quality and short sleep duration were associated with higher occurrence of gastrointestinal symptoms. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the interplay between sleep quality and gastrointestinal symptoms and underlying mechanisms adds to better aftercare and perhaps reduction of residual gastrointestinal symptoms in CRC survivors by improving sleep quality.

Type of treatment, symptoms and patient satisfaction play an important role in primary care contact during prostate cancer follow-up: results from the population-based PROFILES registry.

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 variables, and satisfaction with, trust in, and appraised knowledge of GPs. METHODS: Of 787 prostate cancer survivors diagnosed between 2007 and 2013, and selected from the Netherlands Cancer Registry, 557 (71%) responded to the invitation to complete a questionnaire. Multivariable logistic regression analyses were performed to investigate which variables were associated with GP contact during follow- up. RESULTS: In total, 200 (42%) prostate cancer survivors had contact with their GP during follow-up, and 76 (16%) survivors preferred more contact. Survivors who had an intermediate versus low educational level (OR = 2.0) were more likely to have had contact with their GP during follow-up. Survivors treated with surgery (OR = 2.8) or hormonal therapy (OR = 3.5) were also more likely to seek follow-up care from their GP compared to survivors who were treated with active surveillance. Patient reported bowel symptoms (OR = 1.4), hormonal symptoms (OR = 1.4), use of incontinence aids (OR = 1.6), and being satisfied with their GP (OR = 9.5) were also significantly associated with GP contact during follow-up. CONCLUSIONS: Education, treatment, symptoms and patient satisfaction were associated with GP contact during prostate cancer follow-up. These findings highlight the potential for adverse side-effects to be managed in primary care. In light of future changes in cancer care, evaluating prostate cancer follow-up in primary care remains important.

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.

Is sleep associated with BMI, waist circumference, and diet among long-term colorectal cancer survivors? Results from the population-based PROFILES registry.

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) survivors, as many CRC survivors have an unhealthy weight and diet. METHODS: Cross-sectional data from a longitudinal CRC cohort were used. In this study, survivors were 4-13 years post diagnosis. The Pittsburgh Sleep Quality Index (PSQI) was used to assess both sleep quality and sleep duration. Diet quality was assessed by scoring adherence (low, moderate, high) to the 2007 World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) recommendations of five food groups and nutrients: fruit and vegetables, dietary fiber, red and processed meat, alcoholic beverages, and sugary drinks, using a brief diet screener. BMI and WC were self-measured. Associations were analyzed by multivariable linear and multinomial logistic regression analyses. RESULTS: Among 1002 CRC survivors, 23% reported poor sleep quality (PSQI score ≥ 8) and 24% reported short sleep duration (≤ 6 h). No associations between sleep and BMI, WC, and diet quality were found. CONCLUSION: Sleep problems are common in long-term CRC survivors; however, sleep quality and duration was not associated with BMI, WC, and diet quality in this population. It is unknown why the results differ from findings in the general population.

Towards OPtimal TIming and Method for promoting sUstained adherence to lifestyle and body weight recommendations in postMenopausal breast cancer survivors (the OPTIMUM-study): protocol for a longitudinal mixed-method study.

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 mortality. Gaining and maintaining a healthy lifestyle and body composition is therefore important. It is unknown when and how sustained adherence to these recommendations can be promoted optimally in PMBC survivors. Therefore, the OPTIMUM study aims to identify the optimal timing and method for promoting sustained adherence to lifestyle and body weight recommendations in PMBC survivors. METHODS: The OPTIMUM-study has a mixed-methods design. To assess optimal timing, a longitudinal observational study will be conducted among approximately 1000 PMBC survivors. The primary outcomes are adherence to lifestyle and body weight recommendations, readiness for change, and need for support. Questionnaires will be administered at 4-6 months after cancer diagnosis (wave 1: during treatment and retrospectively before diagnosis), 1 year after diagnosis (wave 2: after completion of initial treatment), and 1.5 years after diagnosis (wave 3: during follow-up). Wave 2 and 3 include blood sampling, and either wearing an accelerometer for 7 days or completing a 3-day online food diary (randomly assigned at hospital level). To assess the optimal method, behavioural determinants of the primary outcomes will be matched with Behavior Change Techniques using the Behaviour Change Technique Taxonomy. Qualitative research methods will be used to explore perceptions, needs and preferences of PMBC survivors (semi-structured interviews, focus groups) and health care providers (Delphi study). Topics include perceptions on optimal timing to promote adherence; facilitators and motivators of, and barriers towards (sustained) adherence to recommendations; and acceptability of the selected methods. DISCUSSION: The OPTIMUM study aims to gain scientific knowledge on when and how to promote sustained adherence to lifestyle and body weight recommendations among PBMC survivors. This knowledge can be incorporated into guidelines for tailored promotion in clinical practice to improve health outcomes.

Psychological distress and lower health-related quality of life are associated with need for dietary support among colorectal cancer survivors with overweight or obesity.

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 alive individuals diagnosed with CRC between 2000 and 2009, as registered by the Dutch population-based Eindhoven Cancer Registry, were eligible for participation and received a questionnaire. Multivariable logistic regression analyses were conducted to assess associations between HRQoL (EORTC QLQ-C30), symptoms of anxiety and depression (HADS), and self-reported need for dietary support (single-item). RESULTS: A total of 1458 completed the questionnaire (response rate 82%), and 756 (43%) had a BMI of 25.0 or higher and complete data on "need for dietary support" and were included for analyses. BMI ranged between 25.0 and 60.6 (mean, 28.9; SD, 3.6). The majority (71.7%) was overweight (BMI ≥ 25), and 28.3% obese (BMI ≥ 30). Twenty-one percent reported a need for dietary support which was associated with more psychological distress and lower HRQoL. Those who experienced symptoms of anxiety or depression were more likely to report a need for dietary support (27.6% and 28.7%) than those who did not experience symptoms of anxiety (12.3%; OR 2.02; 95% CI 1.22-3.35) or depression (13.5%; OR 1.96; 95% CI 1.19-3.22). CONCLUSIONS: Results suggest that psychological distress and lower HRQoL should be taken into account while promoting a healthy diet in overweight or obese CRC survivors since these factors may hinder adherence to a healthy diet.

Follow-up practice and healthcare utilisation of colorectal cancer survivors.

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. Multivariable regression analyses were performed to identify predictors for increased follow-up care (>1 visit than recommended by guidelines). RESULTS: In the first follow-up year, the average number of cancer-related visits to the general practitioner and medical specialist was 1.7 and 4.2, respectively. More than 80% of the CRC survivors was comfortable with their follow-up schedule, and 49-72% of them received follow-up according to the guidelines. Around 29-47% was followed more than recommended. Simultaneously, around 4-14% of the CRC survivors received less follow-up care than recommended. Survivors of stage III disease treated with chemotherapy received the most follow-up care. In addition, lower socio-economic status stoma and fatigue were associated with increased follow-up care. CONCLUSION: CRC survivors were predominantly followed according to national guidelines. Increased follow-up care is driven by advanced disease stage, chemotherapy, SES, stoma and fatigue. Future studies should investigate how increased follow-up care use can be reduced, while still addressing patients' needs.