Patient-reported outcomes in cancer survivorship: insights from two decades of population-based PROFILES registry research.

Purpose: When the field of cancer survivorship research was in its infancy, the PROFILES registry was set up in 2004 to monitor patient-reported outcomes (PROs) in survivors and a normative population. This scoping review aims to summarize lessons learned from developing a population-based PRO registry, focusing on study methodologies, data collection shifts, data utilization, multidisciplinary collaboration, societal impact, and data sharing.

Methods: A systematic computerized literature search through PubMed was performed to collect all publications using data from the PROFILES registry between January 1, 2004, and December 31, 2023.

Quality of life among borderline ovarian tumor survivors: A comparison with survivors of early-stage ovarian cancer and a cancer-free population: A cross-sectional population-based PROFILES study.

Objective: This study assessed the health-related quality of life (HRQo) of women surviving a borderline ovarian tumor (BOT) in comparison with early-stage ovarian cancer survivors treated surgically alone and with a matched cancer-free population.

Methods: Survivors of BOT and ovarian cancer were invited in two Dutch cross-sectional, population-based studies. Ovarian cancer survivors with tumor stage I who were treated surgically only were included.

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.

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.

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.

Cancer worry is associated with increased use of supportive health care-results from the multinational InCHARGE study.

Purpose: To assess use of health care following a diagnosis of endometrial, cervical, and ovarian cancer in the Netherlands, Norway, and Denmark. Furthermore, to analyze the association between cancer worry and use of supportive care.

Methods: An international multicenter cross-sectional questionnaire study was undertaken among female cancer survivors with endometrial, cervical, or ovarian cancer 1-7 years post diagnosis.

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.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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).

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.