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 SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-021-06433-0

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, 201

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

Perceived Care and Well-being of Patients with Cancer and Matched Norm Participants in the COVID-19 Crisis: Results of a Survey of Participants in the Dutch PROFILES Registry

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 experiences with telephone and video consultations [TC/VC]) and patients' well-being in comparison with a norm population during the COVID-19 crisis. Design, Setting, and Participants: Cross-sectional study of patients participating in the Dutch Patient Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship (PROFILES) registry and a norm population who completed a questionnaire from April to May 2020. Main Outcomes and Measures: Logistic regression analysis assessed factors associated with changes in cancer care (treatment or follow-up appointment postponed/canceled or changed to TC/VC). Differences in quality of life, anxiety/depression, and loneliness between patients and age-matched and sex-matched norm participants were evaluated with regression models. Results: The online questionnaire was completed by 4094 patients (48.6% response), of whom most were male (2493 [60.9%]) and had a mean (SD) age of 63.0 (11.1) years. Of these respondents, 886 (21.7%) patients received treatment; 2725 (55.6%) received follow-up care. Treatment or follow-up appointments were canceled for 390 (10.8%) patients, whereas 160 of 886 (18.1%) in treatment and 234 of 2725 (8.6%) in follow-up had it replaced by a TC/VC. Systemic therapy, active surveillance, or surgery were associated with cancellation of treatment or follow-up appointment. Younger age, female sex, comorbidities, metastasized cancer, being worried about getting severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), and receiving supportive care were associated with replacement of a consultation with a TC/VC. Patients and norm participants reported that the COVID-19 crisis made them contact their general practitioner (852 of 4068 [20.9%] and 218 of 979 [22.3%]) or medical specialist/nurse (585 of 4068 [14.4%] and 144 of 979 [14.7%]) less quickly when they had physical complaints or concerns. Most patients who had a TC/VC preferred a face-to-face consultation, but 151 of 394 (38.3%) were willing to use a TC/VC again. Patients with cancer were more worried about getting infected with SARS-CoV-2 compared with the 977 norm participants (917 of 4094 [22.4%] vs 175 of 977 [17.9%]). Quality of life, anxiety, and depression were comparable, but norm participants more often reported loneliness (114 of 977 [11.7%] vs 287 of 4094 [7.0%]) than patients with cancer (P =.009). Conclusions and Relevance: Among patients with cancer in the Netherlands, 1 in 3 reported changes in cancer care in the first weeks of the COVID-19 crisis. Long-term outcomes need to be monitored. The crisis may affect the mental well-being of the general population relatively more than that of patients with cancer

Equity-Specific Effects of 26 Dutch Obesity-Related Lifestyle Interventions

Context: Reducing health inequalities is a policy priority in many developed countries. Little is known about effective strategies to reduce inequalities in obesity and its underlying behaviors. The goal of the study was to investigate differential effectiveness of interventions aimed at obesity prevention, the promotion of physical activity or a healthy diet by SES. Evidence acquisition: Subgroup analyses in 2010 and 2011 of 26 Dutch studies funded by The Netherlands Organization for Health Research and Development after 1990 (n=17) or identified by expert contact (n=9). Methodologic quality and differential effects were synthesized in harvest plots, subdivided by setting, age group, intensity, and time to follow-up. Evidence synthesis: Seven lifestyle interventions were rated more effective and four less effective in groups with high SES; for 15 studies no differential effects could be demonstrated. One study in the healthcare setting showed comparable effects in both socioeconomic groups. The only mass media campaign provided modest evidence for higher effectiveness among those with high SES. Individually tailored and workplace interventions were either more effective in higher-SES groups (n=4) or no differential effects were demonstrated (n=9). School-based studies (n=7) showed mixed results. Two of six community studies provided evidence for better effectiveness in lower-SES groups; none were more effective in higher-SES groups. One high-intensity community-based study provided best evidence for higher effectiveness in low-SES groups. Conclusions: Although for the majority of interventions aimed at obesity prevention, the promotion of physical activity, or a healthy diet, no differential effectiveness could be demonstrated, interventions may widen as well as reduce socioeconomic inequalities in these outcomes. Equity-specific subgroup analyses contribute to needed knowledge about what may work to reduce socioeconomic inequalities in obesity and underlying health behaviors

The relationship of body mass index with quality of life among endometrial cancer survivors: A study from the population-based PROFILES registry

Item does not contain fulltextOBJECTIVE: The aim of the study was to assess the association of body mass index (BMI) and Health-Related Quality of Life (HRQoL), and the relative importance of BMI in explaining variation in QoL among stage I or II endometrial cancer (EC), independent of comorbidities, socio-demographic and clinical characteristics. METHODS: A population-based, cross-sectional survey was conducted in 2008 among endometrial cancer survivors diagnosed between 1999 and 2007 sampled from the Eindhoven Cancer Registry. The HRQoL (SF-36), EC specific HRQoL (EORTC-QLQ-EN24), comorbidities (SCQ) and fatigue (FAS) questionnaire were completed by 666 endometrioid EC survivors. Multivariate regression analyses were used to assess the associations of HRQoL with BMI reported at time of questionnaire completion and to assess the percentage of variance in HRQoL outcomes explained by BMI (R(2)), (controlled for socio-demographic and clinical characteristics and comorbidity). RESULTS: Of all women, 432 (67.6%) were pre-obese (BMI 25-30) or obese (BMI >30). Increased BMI was associated with decreased physical function, decreased vitality, more lymphoedema symptoms, decreased sexual/vaginal problems, less taste change and more fatigue symptoms. BMI added significantly to the explained variance of physical function (4.3%), physical limitations in daily life (role physical; 0.7%), bodily pain (1.5%), vitality (1.6%), emotional limitations in daily life (role emotional; 0.9%), lymphoedema symptoms (5.2%), sexual/vaginal problems (3.2%), urologic problems (0.7%), and fatigue (1.4%). CONCLUSION: BMI was related to several HRQoL outcomes. Therefore BMI needs to be taken into account in HRQoL studies. Moreover, future research should assess if interventions to decrease BMI in obese EC survivors might improve HRQoL