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.

Sex differences in health-related quality of life and psychological distress among colorectal cancer patients: a 2-year longitudinal study.

Purpose: While sex differences in the incidence and mortality of colorectal cancer (CRC) are well documented, less is known about sex differences in patients' health-related quality of life (HRQoL) and psychological distress. To enhance patient-tailored care, we aimed to longitudinally examine sex differences in HRQoL and psychological distress among CRC patients from diagnosis up until 2-year follow-up.

Methods: Newly diagnosed CRC patients from four Dutch hospitals were eligible for participation.

Hypothyroidism and Type D Personality: Results From E-MPATHY, a Cross-sectional International Online Patient Survey.

Context: Between 10% and 15% of people with hypothyroidism experience persistent symptoms, despite achieving biochemical euthyroidism. The underlying causes are unclear. Type D personality (a vulnerability factor for general psychological distress) is associated with poor health status and symptom burden but has not been studied in people with hypothyroidism.

Adverse childhood events and mental health problems in cancer survivors: a systematic review.

Purpose: The purpose of this study was to systematically review the literature on the association between adverse childhood events (ACEs) and mental health problems in cancer survivors.

Methods: This review was conducted in line with PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Four databases (PubMed, PsychINFO, Web of Science, and Cochrane) were searched on 27-08-2023.

Course of objectively measured physical activity and sleep in postmenopausal breast cancer survivors during the COVID-19 pandemic: A 1-year follow-up.

Background: As physical inactivity and poor sleep quality may impose additional risk for cancer recurrence and overall mortality in postmenopausal breast cancer (PMBC) survivors, it is important to gain insight into the effect of the COVID-19 pandemic on their physical activity (PA) and sleep level.

Objective: This study aimed to assess the course of their physical activity (PA) and sleep throughout governmental measures against COVID-19 during 12 months of the COVID-19 pandemic.

Methods: PMBC survivors (n = 96) wore an ActiGraph wGT3X-BT for seven consecutive days at 12 and 18 months after diagnosis and additional measurements were taken after onset of the second (partial) COVID-19 lockdown.

Comparing patient reported abdominal pain between patients treated with oxaliplatin-based pressurized intraperitoneal aerosol chemotherapy (PIPAC-OX) and primary colorectal cancer surgery.

Oxaliplatin-based pressurized intraperitoneal aerosol chemotherapy (PIPAC-OX) is an emerging palliative treatment for patients with unresectable colorectal peritoneal metastases. Previously, our study group reported that patients experienced abdominal pain for several weeks after PIPAC-OX. However, it is unknown how this compares to abdominal pain after regular colorectal cancer surgery.

Coping with and self-management of chronic painful chemotherapy-induced peripheral neuropathy: a qualitative study among cancer survivors.

Purpose: Patients with chronic painful chemotherapy-induced peripheral neuropathy (CIPN) may experience a negative impact of CIPN on daily life. They can use various coping (i.e.

Using the Behavior Change Wheel to Identify and Understand Key Facilitators and Barriers for Lifestyle Care for Postmenopausal Breast Cancer Survivors: A Delphi-Study.

Background: Optimal approaches to promote sustained adherence to lifestyle and bodyweight recommendations in postmenopausal breast cancer (PMBC) survivors are lacking.

Purpose: This Delphi-study aims to identify and understand expert-opinion on potential barriers and facilitators for promoting adherence to these lifestyle and bodyweight recommendations in (clinical) care for PMBC survivors, and to determine potential effective intervention strategies.

Methods: The expert panel consisted of oncology Health Care Professionals (HCPs) (N = 57), patient advocates (N = 5), and PMBC survivors (N = 38).

Colorectal cancer and cardiovascular disease: double the burden when it comes to your health-related quality of life?

Background: The prevalence of comorbid cardiovascular disease (CVD) among patients with colorectal cancer (CRC) has increased in the last decades. Previous studies have focused on the impact of comorbid CVD on clinical outcomes in CRC, while its impact on patients' health-related quality of life (HRQoL) is understudied. This study, therefore, relates (new-onset) CVD to HRQoL (i.

Determinants and mediating mechanisms of quality of life and disease-specific symptoms among thyroid cancer patients: the design of the WaTCh study.

Background: Thyroid cancer (TC) patients are understudied but appear to be at risk for poor physical and psychosocial outcomes. Knowledge of the course and determinants of these deteriorated outcomes is lacking. Furthermore, little is known about mediating biological mechanisms.

Experiences of cancer survivors with chemotherapy-induced peripheral neuropathy in the Netherlands: symptoms, daily limitations, involvement of healthcare professionals, and social support.

Purpose: A significant proportion of cancer patients suffer from chemotherapy-induced peripheral neuropathy (CIPN). This descriptive study aimed to examine patients' experience of CIPN symptoms, daily limitations, involvement of healthcare professionals, and social support.

Methods: Cross-sectional data have been collected in the Netherlands via a national online questionnaire comprising closed items only (February 2021).

Patient-centered development of : an online acceptance and commitment therapy intervention for cancer survivors with chronic painful chemotherapy-induced peripheral neuropathy.

Background: Around 30% of cancer survivors suffer from chemotherapy-induced peripheral neuropathy (CIPN) ≥6 months after completion of chemotherapy, which comes with limitations in daily functioning and worsened quality of life(QoL). Treatment options are scarce. Our aim was to develop an online self-help intervention based on Acceptance and Commitment Therapy (ACT) to reduce pain interference in cancer survivors experiencing painful chronic CIPN.

The Impact of Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy (CRS-HIPEC) versus Conventional Surgery on Patient-Reported Outcomes: A Comparative Cohort Study between the CAIRO6 Trial and the PROCORE Study.

Purpose-To compare patient-reported outcomes (PROs) of patients undergoing cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS-HIPEC) for colorectal peritoneal metastases to PROs of colorectal cancer (CRC) patients undergoing conventional surgery. Methods-Data were extracted from the CAIRO6 trial (CRS-HIPEC group) and the PROCORE study (conventional surgery group). Nine predefined PROs (derived from the EORTC QLQ-C30 questionnaire) were compared at baseline, in the early postoperative period and one year postoperatively, with correction for treatment with systemic therapy using linear mixed modeling.

Fluctuations in core depressive symptoms in colorectal cancer patients. A prospective, population-based PROFILES-registry study.

Purpose: Research investigating depressive symptoms among cancer patients rarely distinguish between core symptoms of depression (motivational and consummatory anhedonia, and negative affect). This distinction is important as these symptoms may show different trajectories during the course of the illness and require different treatment approaches. The aim of the present study is to investigate fluctuations in core depressive symptoms in patients with colorectal cancer (CRC).

External validation and updating of prediction models for estimating the 1-year risk of low health-related quality of life in colorectal cancer survivors.

Objectives: Timely identification of colorectal cancer (CRC) survivors at risk of experiencing low health-related quality of life (HRQoL) in the near future is important for enabling appropriately tailored preventive actions. We previously developed and internally validated risk prediction models to estimate the 1-year risk of low HRQoL in long-term CRC survivors. In this article, we aim to externally validate and update these models in a population of short-term CRC survivors.

Mindfulness is associated with severity of peripheral neuropathy and related patient-reported outcomes among colorectal cancer patients.

Purpose: Despite the detrimental impact of chronic (chemotherapy-induced) peripheral neuropathy PN on patients' lives, treatment options remain limited. We examined the association between mindfulness and chronic PN symptom severity and impairments in related patient-reported outcomes (PROs) among colorectal cancer (CRC) patients up to 2 years after diagnosis.

Methods: Newly diagnosed stage I-IV CRC patients from four Dutch hospitals were eligible for participation.

Effectiveness of the online Acceptance and Commitment Therapy intervention "Embrace Pain" for cancer survivors with chronic painful chemotherapy-induced peripheral neuropathy: study protocol for a randomized controlled trial.

Background: About 30% of cancer survivors suffer from chemotherapy-induced peripheral neuropathy (CIPN) ≥6 months after completion of chemotherapy. This condition, for which treatment options are scarce, comes with limitations in daily life functioning and decreased quality of life. The current study examines the effectiveness of an online self-help intervention based on Acceptance and Commitment Therapy (ACT) in comparison to a waiting list condition (WLC) to deal with CIPN.

A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring.

Electronic patient-reported outcome (ePRO) applications promise great added value for improving symptom management and health-related quality of life. The aim of this narrative review is to describe the collection and use of ePROs for cancer survivorship care, with an emphasis on ePRO-symptom monitoring. It offers many different perspectives from research settings, while current implementation in routine care is ongoing.

Is CT-based body composition associated with long-term chemotherapy-induced peripheral neuropathy in colorectal cancer survivors?

Background: Chemotherapy-induced peripheral neuropathy (CIPN) is a common side effect among colorectal cancer (CRC) survivors, and the severity is mainly dependent on the chemotherapy dose. Nowadays, chemotherapy dose is based on body surface area, while determination based on more accurate measures of body composition may be better. This study aimed to investigate the association between body composition and long-term CIPN among CRC survivors 2-11 years after diagnosis.

Changes in Perceived Stress and Lifestyle Behaviors in Response to the COVID-19 Pandemic in The Netherlands: An Online Longitudinal Survey Study.

The COVID-19 pandemic has substantial implications for physical and mental wellbeing. This study investigated changes, over time, in lifestyle behaviors and perceived stress during the initial phase of the pandemic and associations with COVID-19 symptoms, in the Dutch general population. An online longitudinal survey study was performed with pre-lockdown measurements in February, and subsequently in April and June 2020 (n = 259, mean age 59 ± 14 years, 59% women).

Health-Related Quality of Life in Adrenocortical Carcinoma: Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry.

We aimed to develop a disease-specific adrenocortical carcinoma (ACC) health-related quality of life (HRQoL) questionnaire (ACC-QOL) and assess HRQoL in a population-based cohort of patients with ACC. Development was in line with European Organization for Research and Treatment of Cancer (EORTC) guidelines, though not an EORTC product. In phase I and II, we identified 90 potential HRQoL issues using literature and focus groups, which were reduced to 39 by healthcare professionals.