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. RESULTS: The PROFILES registry's research today encompassed 249 papers from 35 studies. Key insights include the importance of multi-hospital collaboration, which enhances participant inclusion and result generalizability. Optimizing response rates and patient inclusion is achieved through proactive data collection methods such as inclusion by health care professionals, and using both web-based and paper questionnaires. Longitudinal studies, despite their intensive data collection efforts, provide critical insights into the consequences of cancer and its treatment on patient-reported outcomes (PROs) from diagnosis through survivorship. Combining PRO data with comprehensive clinical registry data ensures reliable datasets, crucial for drawing meaningful conclusions. The shift towards multidisciplinary collaboration, open-access publishing, and data sharing all contribute to accessible and impactful research. CONCLUSIONS: This review highlights key insights from the PROFILES registry, emphasizing multi-hospital collaboration, proactive data collection, and the integration of PROs with clinical data. IMPLICATIONS FOR CANCER SURVIVORS: These lessons can guide future research on cancer survivorship, improving methodologies to enhance survivorship care and quality of life through multidisciplinary collaboration and data sharing.

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.

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. Patients (N = 334) completed questions on HRQoL (EORTC QLQ-C30) and psychological distress (HADS) before initial treatment (baseline), 4 weeks after surgery, and at 1 and 2 years after diagnosis. Also, HRQoL and psychological distress were assessed in a sex- and age-matched reference population. RESULTS: When directly comparing female (N = 126, 38%) and male (N = 208, 62%) CRC patients, female patients reported significantly worse HRQoL, such as more insomnia at baseline, worse physical and role functioning 4 weeks after surgery, more diarrhea at 1 year, and more pain and constipation at 2-year follow-up. However, a comparison with the reference population revealed larger differences between patients and reference in males than in females. For example, at 1- and 2-year follow-up, male patients reported significantly worse cognitive and social functioning, more insomnia, and more anxiety compared with a reference population. CONCLUSIONS: Especially male CRC patients reported worse HRQoL and more psychological distress when compared with a reference population. IMPLICATIONS FOR CANCER SURVIVORS: Knowledge of sex-specific differences in HRQoL and psychological distress among CRC patients may help healthcare providers anticipate and appropriately address patients' unique healthcare needs.

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. OBJECTIVE: To investigate type D personality in hypothyroidism and explore associations with other characteristics and patient-reported outcomes. DESIGN: Multinational, cross-sectional survey. SETTING: Online. PARTICIPANTS: Individuals with self-reported, treated hypothyroidism. INTERVENTION: Questionnaire. MAIN OUTCOME MEASURES: Type D personality and associations with baseline characteristics, control of the symptoms of hypothyroidism by medication, satisfaction with care and treatment of hypothyroidism, impact of hypothyroidism on everyday living. RESULTS: A total of 3915 responses were received, 3523 of which were valid. The prevalence of type D personality was 54.2%. Statistically significant associations were found between type D personality and several respondent characteristics (age, marital status, ethnicity, household income, comorbidities, type of treatment for hypothyroidism, most recent TSH level), anxiety, depression, somatization, poor control of the symptoms of hypothyroidism by medication, dissatisfaction with care and treatment of hypothyroidism, and a negative impact of hypothyroidism on everyday living). DISCUSSION: Our study found a high prevalence of type D personality among people with hypothyroidism who responded to the survey. Type D personality may be an important determinant of dissatisfaction with treatment and care among people with hypothyroidism. Our findings require independent confirmation. Close collaboration between the disciplines of thyroidology and psychology is likely to be key in progressing our understanding in this area.

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. RESULTS: Of the 1413 references yielded by the literature search, 25 papers met inclusion criteria and were reviewed. Most studies were performed in the USA, most included breast cancer survivors, and the number of included participants ranged between 20 and 1343. ACEs were relatively prevalent, with self-report rates ranging between 40 and 95%. Having been exposed to ACEs was a risk factor for heightened levels of emotional distress, anxiety, depressive symptoms, and fatigue during cancer treatment. Results varied depending on the variables included, and per subscale, but were consistent across different cultures and heterogenous patient groups. CONCLUSION: The association between ACE and mental health outcomes was significant in most studies. In order to improve treatment for this vulnerable population, it may be necessary to screen for ACEs before cancer treatment and adjust treatment, for example, by means of trauma-informed care (TIC), which recognizes and responds to the impact of trauma on individuals seeking healthcare.

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). They completed three questionnaires: Q1-idea generation; Q2-validation and prioritization; Q3-ranking. The Behavior Change Wheel was used as theoretical framework for analysis. Thematic analysis was applied to identify key overarching themes based on the top-ranked facilitators and barriers. Potential Behavior Change Techniques (BCTs) and intervention strategies were identified using the Behavior Change Technique Taxonomy version 1 and the Behavior Change Wheel. RESULTS: Eleven core categories of key barriers/facilitators for the promotion of adherence to recommendations for lifestyle and bodyweight among PMBC survivors were identified. For each core category, relevant BCTs and practical potential intervention strategies were selected based on suggestions from the expert panel. These included: increasing knowledge about the link between lifestyle and cancer; enabling self-monitoring of lifestyle behaviors followed by evaluation; offering group lifestyle counseling for PMBC survivors, enhancing social support for favorable lifestyle behaviors; and stimulating multidisciplinary collaboration among HCPs. CONCLUSIONS: Findings provide valuable insight for the development of interventions changing behavior of PMBC survivors and HCPs toward increased healthy lifestyle (support) behavior.

Optimal approaches to promote sustained adherence to lifestyle and bodyweight recommendations in postmenopausal breast cancer (PMBC) survivors are lacking. 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. The expert panel consisted of oncology Health Care Practitioners (HCPs) (N = 57), patient advocates (N = 5), and PMBC survivors (N = 38). They completed three questionnaires: Q1­idea generation; Q2­validation and prioritization; Q3­ranking. The Behavior Change Wheel was used as theoretical framework for analysis. Thematic analysis was applied to identify key overarching themes based on the top-ranked facilitators and barriers. Potential Behavior Change Techniques (BCTs) and intervention strategies were identified. Eleven core categories of key barriers/facilitators for the promotion of adherence to recommendations for lifestyle and bodyweight among PMBC survivors were identified. For each core category, relevant BCTs and practical potential intervention strategies were selected based on suggestions from the expert panel. These included: increasing knowledge about the link between lifestyle and cancer; enabling self-monitoring of lifestyle behaviors followed by evaluation; offering group lifestyle counseling for PMBC survivors, enhancing social support for favorable lifestyle behaviors; and stimulating multidisciplinary collaboration among HCPs.

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. Longitudinal data was categorized into four timepoints: before onset of COVID-19 (T1), during the initial lockdown (T2), in between initial and second lockdown (T3), and during the second lockdown (T4). General linear mixed effects models assessed differences in moderate-to-vigorous physical activity (MVPA) per day, total minutes of PA per day, average acceleration, intensity gradient, sleep efficiency, and sleep duration over time. RESULTS: Levels of MVPA per day before COVID-19 were low (Median = 20.9 min/day (IQR = 10.8;36.2)), and time spent physically active was most often in light intensity, which remained stable throughout the pandemic. Sleep duration (Median = 442.8 min/night (IQR = 418.3;478.0)) and efficiency (85.9% (IQR = 79.6;88.4)) was sufficient before COVID-19 and showed stability over time. CONCLUSIONS: Low levels of PA with mostly light intensity, and adequate sleep efficiency and duration were observed before COVID in PMBC survivors. This was not further affected by COVID-19 governmental measures.

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. To provide some perspective, this study compared the presence of abdominal pain after PIPAC-OX to the presence of abdominal pain after primary tumor surgery. Patient reported abdominal pain scores (EORTC QLQ-CR-29), from two prospective, Dutch cohorts were used in this study. Scores ranged from 0 to 100, a higher score represents more abdominal pain. Abdominal pain at baseline and at four weeks after treatment were compared between the two groups. Twenty patients who underwent PIPAC-OX and 322 patients who underwent primary tumor surgery were included in the analysis. At baseline, there were no differences in abdominal pain between both groups (mean 20 vs. 18, respectively; p = 0.688). Four weeks after treatment, abdominal pain was significantly worse in the PIPAC group (39 vs 15, respectively; p < 0.001; Cohen's d = 0.99). The differential effect over time for abdominal pain differed significantly between both groups (mean difference: 19 vs - 3, respectively; p = 0.004; Cohen's d = 0.88). PIPAC-OX resulted in significantly worse postoperative abdominal pain than primary tumor surgery. These results can be used for patient counseling and stress the need for adequate analgesia during and after PIPAC-OX. Further research is required to prevent or reduce abdominal pain after PIPAC-OX.Trial registration CRC-PIPAC: Clinicaltrails.gov NCT03246321 (01-10-2017).

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., dealing with symptoms and resulting impairments in general) and self-management (i.e., practical actions to reduce symptoms) strategies to live with their limitations. This paper aimed to examine experienced helpful coping and self-management strategies of patients with chronic painful CIPN. METHODS: Semi-structured interviews were conducted with twelve patients with chronic painful CIPN. We applied a hybrid deductive-inductive coding approach. ATLAS.ti was used for coding. RESULTS: Generated from the data were two themes and nine codes for coping and four themes and 31 codes for self-management strategies. Coping of patients often included active strategies like planning, seeking social support, and acceptance. Additionally, patients often used passive strategies such as focusing on and venting emotions and suppressing competing activities. The most common self-management strategies were mostly passive (i.e., medication, deliberate choice of shoes, resting, sitting, and consulting healthcare professionals) but also active (i.e., exercising) strategies. CONCLUSION: Patients exhibit a great variety of coping and self-management strategies that they perceive as helpful to deal with chronic painful CIPN. However, research has shown that certain strategies are not that helpful or even come with aversive effects. More research into the effectiveness and implementation of psychosocial interventions is needed since it may help patients adopting helping strategies. In addition, healthcare professionals need to refer patients with CIPN in a timely manner to physical therapists, occupational therapists, or rehabilitation teams to reduce or prevent (further) impairments. IMPLICATIONS FOR CANCER SURVIVORS: Patients can consult one of their healthcare providers in case of problems in dealing with their symptoms, to get proper guidance and possible referral.

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.e., physical, role, cognitive, emotional, and social functioning, and two CVD-related symptom scales fatigue and dyspnea) in a two-year follow-up study among CRC patients. MATERIALS AND METHODS: Newly diagnosed CRC patients from four Dutch hospitals were eligible for participation. Patients (N = 327) completed questions on HRQoL (EORTC QLQ-C30) and the presence and timing of CVDs before initial treatment (baseline) and one and two years after diagnosis. RESULTS: CRC patients with comorbid CVD at cancer diagnosis (n = 72, 22%) reported significantly worse physical functioning at 2-year follow-up compared with patients who never had comorbid CVD (p < .05). CRC patients with new-onset CVD (n = 36, 11%) reported worse global QoL, worse role functioning, and more fatigue at 1 and 2-year follow-up compared with patients who never had comorbid CVD. In addition, they reported more dyspnea at baseline and worse physical functioning at 2-year follow-up (p < .05). Finally, patients with new-onset CVD reported worse global quality of life at 1-year follow-up and worse role functioning and more fatigue at 2-year follow-up, compared with patients with comorbid CVD at cancer diagnosis (p < .05). All significant differences between the three groups were of clinical relevance. CONCLUSIONS: CRC patients with CVD, specifically those with new-onset CVD, reported a significantly and clinically relevant worse HRQoL compared with those who never had comorbid CVD. These findings seem to indicate, although the number is small, that CRC patients might have cardiovascular needs that need to be addressed and that multidisciplinary care is recommended. Larger studies are needed to confirm this.

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. OBJECTIVES: The WaTCh-study aims to; 1. Examine the course of physical and psychosocial outcomes. 2. Examine the association of demographic, environmental, clinical, physiological, and personality characteristics to those outcomes. In other words, who is at risk? 3. Reveal the association of mediating biological mechanisms (inflammation, kynurenine pathway) with poor physical and psychological outcomes. In other words, why is a person at risk? DESIGN AND METHODS: Newly diagnosed TC patients from 13 Dutch hospitals will be invited. Data collection will take place before treatment, and at 6, 12 and 24 months after diagnosis. Sociodemographic and clinical information is available from the Netherlands Cancer Registry. Patients fill-out validated questionnaires at each time-point to assess quality of life, TC-specific symptoms, physical activity, anxiety, depression, health care use, and employment. Patients are asked to donate blood three times to assess inflammation and kynurenine pathway. Optionally, at each occasion, patients can use a weighing scale with bioelectrical impedance analysis (BIA) system to assess body composition; can register food intake using an online food diary; and can wear an activity tracker to assess physical activity and sleep duration/quality. Representative Dutch normative data on the studied physical and psychosocial outcomes is already available. IMPACT: WaTCh will reveal the course of physical and psychosocial outcomes among TC patients over time and answers the question who is at risk for poor outcomes, and why. This knowledge can be used to provide personalized information, to improve screening, to develop and provide tailored treatment strategies and supportive care, to optimize outcomes, and ultimately increase the number of TC survivors that live in good health.

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). RESULTS: Out of 3752 respondents, 1975 received chemotherapy only (i.e., without targeted therapy) and were therefore included. The majority (71.2%) reported symptoms in both hands and feet (e.g., tingling and loss of sensation or diminished sensation). Participants reported most limitations in household chores, social activities, hobbies, sports, walking, and sleeping and least in family/(taking care of) children, cycling, driving, self-care, eating and drinking, and sexuality and intimacy. Many patients indicated that their healthcare professionals informed them about the possibility of CIPN development before treatment (58.4%), and they paid attention to CIPN during and after treatment (53.1%). However, many patients (43%) reported a lack of information on what to do when CIPN develops. Few participants (22%) visited their general practitioner (GP) for CIPN. In general, patients' social environments sometimes to always showed empathy to patients. CONCLUSIONS: Symptoms of CIPN are frequently reported and can result in various daily limitations. Support from professionals and peers is crucial in managing CIPN, which is sometimes lacking. Appropriate guidance and support should be provided to patients to decrease the impact of CIPN on daily life. Future research should investigate differences in chemotherapeutic agents and the resulting symptoms and consequences.

Patient-centered development of Embrace Pain: 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. MATERIAL AND METHODS: This article applied a patient-centered design process using the Center for eHealth Research (CeHRes) roadmap. User needs were examined using online semi-structured interviews with patients and experts (N = 23). Interviews were transcribed verbatim and analyzed using thematic analysis. Personas were created based on interviews. Intervention content was based on identified user needs and ACT. Content and design were finalized using low-fidelity prototype testing (N = 5), and high-fidelity prototype testing (N = 7). RESULTS: Patients appreciated and agreed with the elements of ACT, had varying guidance needs, and wanted to have autonomy (e.g., moment and duration of use). Additionally, it was important to be aware that patients have had a life-threatening disease which directly relates to the symptoms they experience. Patients reported to prefer a user-friendly and accessible intervention. Similar points also emerged in the expert interviews. The final intervention, named Embrace Pain, includes six sessions. Session content is based on psychoeducation and all ACT processes. Further interpretation of the intervention (such as quotes, guidance, and multimedia choices) is based on the interviews. CONCLUSION: This development demonstrated how a patient-centered design process from a theoretical framework can be applied. Theory-driven content was used as the basis of the intervention. Findings show an online ACT intervention designed for cancer survivors with 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. Results-In total, 331 patients were included: 71 in the CRS-HIPEC group and 260 in the conventional surgery group. All predefined PROs (fatigue, diarrhea, C30 summary score, Global Health Status, physical, role, emotional, cognitive, and social functioning) did not differ significantly between the groups at all three timepoints, and differential effects over time for all PROs did not differ significantly between the groups. Significant worsening of fatigue, C30 summary score, physical and role functioning (both groups), and cognitive and social functioning (conventional surgery group only) was present in the early postoperative period. All scores returned to baseline at one year postoperatively, except for physical and cognitive functioning in the conventional surgery group. Emotional functioning improved postoperatively in both groups compared to baseline. Conclusion-Despite a more extensive procedure with greater risk of morbidity, CRS-HIPEC in patients with colorectal peritoneal metastases did not have a greater negative impact on PROs than conventional surgery in patients with CRC. Further, systemic therapy did not affect these PROs. These findings may facilitate future patient counseling and shared decision making in clinical practice.

Association between peripheral neuropathy and sleep quality among colorectal cancer patients from diagnosis until 2-year follow-up: results from the PROFILES registry.

PURPOSE: Studies on the association between peripheral neuropathy (PN) and patient-reported outcomes have mostly overlooked sleep quality. Therefore, we aimed to assess the association between PN and sleep quality in a population-based sample of colorectal cancer (CRC) patients up 2 years after diagnosis. METHODS: All newly diagnosed CRC patients from four Dutch hospitals were eligible for participation. Patients (N = 340) completed questionnaires about PN (EORTC QLQ-CIPN20) and sleep (PSQI) before initial treatment (baseline) and 1 and 2 years after diagnosis. RESULTS: Patients who developed sensory PN (n = 76) or motor PN (n = 79) after treatment more often reported poor sleeping scores (PSQI > 5) compared with those who did not develop SPN or MPN at 1-year (SPN: 38% vs. 261%, MPN: 37% vs. 14%) and 2-year follow-up (SPN: 38 vs. 23%, MPN: 37% vs. 18%) (all p < 0.05). Overall, results showed that among patients who did not develop SPN or MPN, sleep quality improved after baseline, while among patients with SPN or MPN, sleep quality did not improve at one and two years after diagnosis. CONCLUSIONS: Both SPN and MPN were significantly associated with the course of sleep quality among CRC patients up to 2 years after diagnosis. Clinicians should be encouraged to discuss sleep quality with their patients who either report PN or are at risk of developing PN. IMPLICATIONS FOR CANCER SURVIVORS: Improving sleep quality among survivors with PN is important, either by reducing PN symptoms or directly targeting sleep.

Self-performed Five Times Sit-To-Stand test at home as (pre-)screening tool for frailty in cancer survivors: Reliability and agreement assessment.

AIMS AND OBJECTIVES: The self-performance of a Five-Times-Sit-To-Stand (FTSTS)-test, without the usual supervision by a medical professional, provides valuable opportunities for clinical practice and research. This study aimed: (1) to determine the validity of the self-performed FTSTS test in comparison to a supervised reference test and (2) to determine the reliability of a self-performed FTSTS test by cancer survivors. BACKGROUND: Early detection of frailty in cancer survivors may enable prehabilitation interventions before surgery or intensive treatment, improving cancer outcomes. DESIGN: A repeated measures reliability and agreement study, with one week in between measures, was performed. METHODS: Cancer survivors (n = 151) performed two FTSTS tests themselves. One additional reference FTSTS test was supervised by a physical therapist. The intraclass correlation coefficient (ICC), structural error of measurement (SEM) and minimally important clinical difference (MID) were calculated comparing a self-performed FTSTS test to the reference test, and comparing two self-performed FTSTS tests. The Guidelines for Reporting Reliability and Agreement Studies (GRASS) have been used. RESULTS: Mean age of cancer survivors was 65.6 years (SD = 9.3), 54.6% were female, median time since diagnosis was 2 years [IQR = 1], and tumour type varied (e.g., breast cancer (31.8%), prostate cancer (17.2%), gastrointestinal cancer (11.9%) and haematological cancer (11.9%)). Validity of the self-performed FTSTS test at home was acceptable in comparison with the reference test (ICC = .74; SEM = 3.2; MID = 3.6) as was the reliability of the self-performed FTSTS test (ICC = .70; SEM = 2.2; MID = 3.8). CONCLUSIONS: The self-performed FTSTS test is a valid and reliable measure to assess lower body function and has potential to be used as objective (pre-)screening tool for frailty in cancer survivors. RELEVANCE TO CLINICAL PRACTICE: The self-performed FTSTS test at home may indicate the cancer survivors in need of prehabilitation in advance of surgery or intensive treatment. The feasibility, short amount of time needed and potential cost-effectiveness of the self-performed FTSTS test can make it a valuable contribution to personalised care and precision medicine.

Longitudinal associations of fast foods, red and processed meat, alcohol and sugar-sweetened drinks with quality of life and symptoms in colorectal cancer survivors up to 24 months post-treatment.

Unhealthy dietary habits can contribute to the development of colorectal cancer (CRC). Such habits may also be associated with post-treatment symptoms experienced by CRC survivors. Therefore, we aimed to assess longitudinal associations of post-treatment unhealthy dietary habits, i.e. intake of ultra-processed foods (UPF), red and processed meat, alcohol and sugar-sweetened drinks, with health-related quality of life (HRQoL), fatigue and chemotherapy-induced peripheral neuropathy (CIPN) in CRC survivors from 6 weeks up to 24 months post-treatment. In a prospective cohort among stage I-III CRC survivors (n 396), five repeated home visits from diagnosis up to 24 months post-treatment were executed. Dietary intake was measured by 7-d dietary records to quantify consumption of UPF, red and processed meat, alcohol and sugar-sweetened drinks. HRQoL, fatigue and CIPN were measured by validated questionnaires. We applied confounder-adjusted linear mixed models to analyse longitudinal associations from 6 weeks until 24 months post-treatment. We applied a post hoc time-lag analysis for alcohol to explore the directionality. Results showed that higher post-treatment intake of UPF and sugar-sweetened drinks was longitudinally associated with worsened HRQoL and more fatigue, while higher intake of UPF and processed meat was associated with increased CIPN symptoms. In contrast, post-treatment increases in alcohol intake were longitudinally associated with better HRQoL and less fatigue; however, time-lag analysis attenuated these associations. In conclusion, unhealthy dietary habits are longitudinally associated with lower HRQoL and more symptoms, except for alcohol. Results from time-lag analysis suggest no biological effect of alcohol; hence, the longitudinal association for alcohol should be interpreted with caution.

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.

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). It is hypothesized that these core depressive symptoms fluctuate differently during the course of the illness and depend on the phase of the illness (diagnostic, treatment, recovery and palliative phase). METHOD: This study is based on data from the PROCORE study. PROCORE is a prospective, population-based study aimed to examine the longitudinal impact of CRC and its treatment on patient-reported outcomes. Eligible patients completed self-report questionnaires (i.e. Multifactorial Fatigue Index, Hospital Anxiety and Depression scale, EORTC-C30) after diagnosis, after surgery and at one and two years after diagnosis. RESULTS: In total, 539 patients participated of whom 68 have died until March 1ste 2021. Core depressive symptoms fluctuated differently during the course of the illness with higher levels of motivational anhedonia during treatment and palliative phase (P<.001), consummatory anhedonia at the palliative phase (p < .001) and negative affect at the diagnostic and palliative phase (P<.001). CONCLUSION: It is important to distinguish between different core depressive symptoms as they fluctuate differently during the course of an illness like CRC. The various depressive symptoms may require a different treatment approach at specific moments during the illness process.

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. STUDY DESIGN AND SETTING: In a pooled cohort of 1,596 CRC survivors, seven HRQoL domains (global QoL, cognitive/emotional/physical/role/social functioning, and fatigue) were measured prospectively at approximately 5 months postdiagnosis (baseline for prediction) and approximately 1 year later by a validated patient-reported outcome measure (European Organization for Research and Treatment of Cancer Quality of life Questionnaire-Core 30). For each HRQoL domain, 1-year scores were dichotomized into low vs. normal/high HRQoL. Performance of the previously developed multivariable logistic prediction models was evaluated (calibration and discrimination). Models were updated to create a more parsimonious predictor set for all HRQoL domains. RESULTS: Updated models showed good calibration and discrimination (AUC ≥0.75), containing a single set of 15 predictors, including nonmodifiable (age, sex, education, time since diagnosis, chemotherapy, radiotherapy, stoma, and comorbidities) and modifiable predictors (body mass index, physical activity, smoking, anxiety/depression, and baseline fatigue and HRQoL domain scores). CONCLUSION: Externally validated and updated prediction models performed well for estimating the 1-year risk of low HRQoL in CRC survivors within 6 months postdiagnosis. The impact of implementing the models in oncology practice to improve HRQoL outcomes in CRC survivors needs to be evaluated.