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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. Patients (N = 336) completed a questionnaire on mindfulness (MAAS) at 1 year after diagnosis, and questionnaires on sensory (SPN) and motor peripheral neuropathy (MPN) (EORTC QLQ-CIPN20), anxiety and depressive symptoms (HADS), sleep quality (PSQI), and fatigue (EORTC QLQ-C30) before initial treatment (baseline) and 1 and 2 years after diagnosis.Results: At 1-year follow-up, 115 patients (34%) and 134 patients (40%), respectively, reported SPN or MPN symptoms. In multivariable regression analyses, higher mindfulness at 1-year follow-up was associated with less severe MPN and fewer anxiety and depressive symptoms, better sleep quality, and less fatigue. Of the patients with SPN or MPN at 1-year follow-up, symptoms had not returned to baseline level at 2-year follow-up in 59 (51%) and 72 (54%) patients, respectively. In this subgroup, higher mindfulness was associated with less severe SPN and fewer anxiety symptoms, depressive symptoms, and fatigue at 2-year follow-up.Conclusion: Mindfulness was associated with less severe PN and better related PROs among CRC patients with chronic PN. More research is needed to examine the role of mindfulness in the transition from acute to chronic PN. [ABSTRACT FROM AUTHOR]

With the increasing prevalence of comorbidity in an ageing population, it is crucial to better understand the impact of comorbidity on health-related quality of life (HRQoL) after lymphoma or multiple myeloma (MM) diagnosis. We included 261 newly diagnosed patients (67% response rate) diagnosed with lymphoma or MM between October 2020 and March 2023 in a longitudinal survey. The European Organisation for Research and Treatment of Cancer (EORTC) questionnaires were used to measure generic and disease-specific HRQoL. Evidence-based guidelines for interpretation of the EORTC questionnaires were used to identify clinical importance. Patients were classified as having ‘no comorbidity’, ‘mild comorbidity’ (e.g. arthrosis or rheumatism), or ‘moderate-severe comorbidity’ (e.g. heart or lung disease), using the adapted self-administered comorbidity questionnaire. At diagnosis, the mean age was 64 years, 63% were male and 38% reported no comorbidity, 33% mild comorbidity, and 29% moderate-severe comorbidity. Patients with mild or moderate-severe comorbidity reported clinically relevant worse HRQoL at diagnosis than patients without comorbidity. One year post-diagnosis most outcomes showed clinically relevant improvement, irrespective of comorbidity. However, outcomes of physical functioning (β=-7.9, p < 0.05), global health status (β=-7.6, p < 0.05), bone pain (β = 8.1 to 9.1, p < 0.05), muscle/joint pain (β = 14.5 to 18.8, p < 0.01) and muscle weakness (β = 10.4 to 15.6, p < 0.05) improved less among those with comorbidity, and clinically relevant differences between comorbidity groups persisted over time. With clinically relevant worse HRQoL at diagnosis and less recovery of HRQoL during the first year after diagnosis in patients with comorbidity, consideration of both prognosis and HRQoL is important when making treatment decisions. [ABSTRACT FROM AUTHOR]

Summary: Little is known about the long‐term health‐related quality of life (HRQoL) and persistence of symptoms among patients with indolent non‐Hodgkin lymphoma (iNHL). This large population‐based longitudinal study therefore investigated the long‐term HRQoL and persistence of symptoms and identified associated sociodemographic, clinical and psychological factors. Patients diagnosed between 1999 and 2014 and four or more months after diagnosis were invited to participate in a longitudinal survey. Sociodemographic and clinical data were obtained from the Netherlands Cancer Registry. The EORTC QLQ‐C30 and CLL‐16 were completed by 669 patients (74% response rate). Patients completed on average four questionnaires. Primary treatment was active surveillance (52%), systemic therapy (31%) or radiotherapy (13%). Respectively, 36% reported persistent fatigue, 33% persistent neuropathy and 25% persistent role‐functioning impairment. This was 2–3 times higher than in the age‐ and sex‐matched normative population. Up to 10 years after diagnosis, scores remained relatively stable without clinically relevant changes. Comorbidities, psychological distress, shorter time since diagnosis, systemic therapy, younger age, education level and having no partner were associated with worse outcomes (all ps < 0.05). Up to a third of patients with iNHL experience long‐term persistent symptoms which do not improve over time. Early recognition of symptoms will help in providing tailored supportive care for those in need. [ABSTRACT FROM AUTHOR]

Purpose: Cancer‐related fatigue (CRF) is one of the most prevalent symptoms experienced by cancer survivors. However, researchers are only beginning to elucidate the risk factors, underlying mechanism(s), and its association with other outcomes. Research on the association between CRF and mortality is limited. Methods: The study sample comprised 2059 short‐term (<5 years postdiagnosis) cancer survivors from four PROFILES registry studies. Survivors diagnosed with stage I‐III colorectal cancer (CRC) or stage I‐III endometrial cancer (EC), with no evidence of disease, were identified and followed‐up by the Netherlands Cancer Registry. Fatigue was assessed with the Fatigue Assessment Scale. Cox proportional hazards models adjusted for demographic, clinical, and lifestyle characteristics were performed to assess the association of CRF with all‐cause mortality. Date of censoring was February 1, 2017. Results: Prevalence of CRF varied between 35.8% (male CRC) and 43.6% (female CRC). After a median follow‐up period of 9.0 years, a total of 408 survivors (20%) had died. CRF was associated with increased all‐cause mortality in male CRC survivors (HRadj = 1.75, 95% CI [1.31‐2.33]). This association remained statistically significant after excluding survivors experiencing anhedonia. For female CRC (HRadj = 1.32, 95% CI [0.90‐1.97]) and EC (HRadj = 1.27, 95% CI [0.84‐1.90]) survivors, there was no significant association with all‐cause mortality for the fatigued group in multivariable analyses. Conclusion: Our study found that CRF is significantly associated with all‐cause mortality in male CRC survivors, irrespective of potential confounders. This result suggests that clinicians should increase their attention towards the recognition and treatment of CRF. [ABSTRACT FROM AUTHOR]

Purpose: Sporadic desmoid-type fibromatosis (DTF) is a rare, chronic, non-metastasising, disease of the soft tissues. It is characterised by local invasive and unpredictable growth behaviour and a high propensity of local recurrence after surgery thereby often having a great impact on health-related quality of life (HRQL). This study aims to review currently used HRQL measures and to asses HRQL issues among DTF patients.Methods: A mixed methods methodology was used consisting of (1) a systematic literature review, according to the PRISMA guidelines (2009), using search terms related to sporadic DTF and HRQL in commonly used databases (e.g. Embase, Medline Ovid, Web of science, Cochrane Central, Psyc Info, and Google scholar), to provide an overview of measures previously used to evaluate HRQL among DTF patients; (2) focus groups to gain insight into HRQL issues experienced by DTF patients.Results: The search strategy identified thirteen articles reporting HRQL measures using a wide variety of cancer-specific HRQL tools, functional scores, symptom scales (e.g. NRS), and single-item outcomes (e.g. pain and functional impairment). No DTF-specific HRQL tool was found. Qualitative analysis of three focus groups (6 males, 9 females) showed that participants emphasised the negative impact of DTF and/or its treatment on several HRQL domains. Six themes were identified: (1) diagnosis, (2) treatment, (3) follow-up and recurrence, (4) physical domain, (5) psychological and emotional domain, and (6) social domain.Conclusion: A DTF-specific HRQL tool and consensus regarding the preferred measurement tool among DTF patients is lacking. Our study indicates that HRQL of DTF patients was negatively affected in several domains. A DTF-specific HRQL measure could improve our understanding of short- and long-term effects and, ideally, can be used in both clinic and for research purposes. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to assess health-related quality of life (HRQoL) in patients with brain metastases treated with stereotactic radiosurgery (SRS) and to identify factors associated with this. Methods: HRQoL was measured pre-SRS, at 3- and 6-month follow-up. Physical functioning, cognitive functioning, role functioning, and fatigue were analyzed with the EORTC QLQ-C30 questionnaire. Motor dysfunction, future uncertainty, visual disorder, communication deficit, and headaches were analyzed with the EORTC QLQ-BN20. Clinically important symptom or functional impairment was assessed following set thresholds. Factors associated with impairment were identified through multivariable logistic regression analyses. Results: At baseline, 178 patients were included; 54% (n=96) completed questionnaires at 3 months and 39% (n=70) at 6 months. Before SRS, 29% of linear accelerator (LINAC) patients reported physical and cognitive impairment, while 25% reported impairment for fatigue. At 6 months, 39%, 43%, and 57% of LINAC patients reported impairment respectively. Forty-five percent of Gamma Knife (GK) patients reported impairment pre-SRS for physical, cognitive functioning, and fatigue. At 6 months, 48%, 43%, and 33% of GK patients reported impairment respectively. Except for role functioning, pre-SRS symptom and functioning scores were associated with impairment at 3 months, whereas scores at 3 months were associated with impairment at 6 months. Age, gender, systemic therapy, and intracranial progression were not associated with clinically important impairment. Conclusion: As 33–57% of patients with brain metastases reported symptom burden and functional impairments that were of clinical importance, it is recommended to pay attention to the HRQoL outcomes of these patients during clinical encounters. [ABSTRACT FROM AUTHOR]

Background: Patients with lymphoma are at risk of experiencing adverse physical and psychosocial problems from their cancer and its treatment. Regular screening of these symptoms by the use of patient-reported outcomes (PROs) could increase timely recognition and adequate symptom management. Moreover, self-management interventions intend to enhance knowledge and skills and empower patients to better manage their disease and related problems. The objective of the Lymphoma InterVEntion (LIVE) trial is to examine whether feedback to patients on their PROs and access to a web-based, self-management intervention named Living with lymphoma will increase self-management skills and satisfaction with information, and reduce psychological distress.Methods/design: The LIVE randomised controlled trial consists of three arms: (1) standard care, (2) PRO feedback, and (3) PRO feedback and the Living with lymphoma intervention. Patients who have been diagnosed with Hodgkin lymphoma, non-Hodgkin lymphoma, including chronic lymphocytic leukaemia, as registered in the Netherlands Cancer Registry in various hospitals will be selected for participation. Patients are invited via their haemato-oncologist 6 to 15 months after diagnosis. The PRO feedback includes a graphical overview of patients' own symptom and functioning scores and an option to compare their scores with those of other patients with lymphoma and a normative population of the same age and sex. The Living with lymphoma intervention is based on cognitive behavioural therapy components and includes information, assignments, assessments, and videos. Changes in outcomes from baseline to 16 weeks, 12, and 24 months post intervention will be measured. Primary outcomes are self-management skills, satisfaction with information, and psychological distress. Secondary outcomes are health-related quality of life, illness perceptions, fatigue, and health care use.Discussion/design: The results of the LIVE trial will provide novel insights into whether access to PRO feedback and the Living with lymphoma intervention will be effective in increasing self-management skills and satisfaction with information, and reducing distress. The LIVE trial is embedded in a population-based registry, which provides a unique setting to ascertain information on response, uptake, and characteristics of patients with lymphoma in web-based intervention(s). When effective, PRO feedback and Living with lymphoma could serve as easily and widely accessible interventions for coping with lymphoma.Trial Registration: Netherlands Trial Register, identifier NTR5953 . Registered on 14 July 2016. [ABSTRACT FROM AUTHOR]

Background:To help the growing number of cancer survivors deal with the challenges of cancer survivorship, survivorship care plans (SCPs) were recommended by the Institute of Medicine (IOM) in 2006. The SCP is a formal document that contains both a tailored treatment summary and a follow-up care plan. Since the IOM recommendation 10 years ago, the implementation in daily clinical practice is minimal. Several studies have investigated the effects of SCPs on patient-reported outcomes and oncology and primary care providers (PCPs), but the quantity and quality of these studies are limited. Results:The first four randomized trials comparing SCP delivery with usual care failed to show a positive effect on satisfaction with information provision, satisfaction with care, distress or quality of life. SCPs did improve the amount of information provided and communication of PCPs with medical specialists and patients. A recent small trial that changed the focus from SCP as primarily an information delivery intervention to a behavioral intervention did observe positive effects on self-reported health, lower social role limitations and a trend towards greater self-efficacy. Gaps in knowledge about SCPs include uncertainty about content and length of the SCP; whether it should be delivered online or on paper; the timing and frequency of delivery; which health care provide should deliver SCP care. Finally, cost-effectiveness of SCP interventions has received limited attention. Conclusion:Currently, there is not enough evidence to warrant large-scale implementation of SCPs, or to abandon SCPs altogether. Emphasis on the SCP process and survivor engagement, supporting self-management may be an important way forward in SCP delivery. Whether this is beneficial and cost-effective on the long term and among different groups of cancer survivors needs further investigation. [ABSTRACT FROM PUBLISHER]

Objective Chemotherapy-induced peripheral neuropathy (CIPN) is a debilitating side-effect of chemotherapy. However, CIPN symptoms are also reported by patients not receiving chemotherapy. Normative data could help interpret CIPN among cancer patients. Our aim was to generate normative data for the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-CIPN20 Questionnaire designed to assess CIPN from the patients' perspective. The normative CIPN data have also been generated for stratified subgroups formed on the basis of sex, age and comorbidity. Methods The QLQ-CIPN20 and the Self-administered Comorbidity Questionnaire were administered to a representative panel of the Dutch-speaking population in the Netherlands. Results Two thousand one hundred and two (78%) of those invited completed the questionnaires. The majority reported no CIPN symptoms (83–97%). Cronbach's alpha coefficients for the sum score, and sensory, motor and autonomic subscales were 0.87, 0.76, 0.82 and 0.49, respectively. Compared with men, women scored significantly worse on the sum score (men, 3.0 versus women, 4.3; p < 0.001), motor scale (2.7 versus 5.1; p < 0.001) and autonomic scale (3.8 versus 5.2; p < 0.01), but this difference was not clinically relevant. CIPN symptoms increased significantly with age among both men (for the sum score and all scales) and women (for the sum score, sensory and motor scale). Those with self-reported comorbidities reported significantly more CIPN symptoms, both statistically and clinically, than those without. For instance, they had a lower mean sum score (1.5) compared to those with asthma/chronic obstructive pulmonary disease (COPD; 6.9), diabetes (5.9), heart disease (8.0), hypertension (6.2), osteoarthritis (9.6) and rheumatoid arthritis (13.8). Conclusions A low prevalence of neuropathy was observed in the normative population without cancer, although neuropathy did increase with age and the presence of comorbidities. These data (which is freely available) can aid in the interpretation of QLQ-CIPN20 scores and can help increase our understanding of the influence of age, sex and comorbid conditions on CIPN among cancer patients. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: Routine lymphadenectomy (LA) in early stage endometrial cancer does not improve survival. However, in the absence of lymph node metastasis, radiotherapy (RT) could be withheld and hence could result in less morbidity. Our aim was to evaluate health related quality of life (HRQL) in endometrial cancer survivors that received routine pelvic LA without RT compared to no LA, but RT in the presence of risk factors. Methods: Stage I–II endometrial cancer survivors diagnosed between 1999 and 2007 were selected from the Eindhoven Cancer Registry. Survivors completed the SF-36 and the EORTC-QLQ-EN24. ANCOVA and multiple linear regression analyses were applied. Results: 742 (77%) of the endometrial cancer survivors returned a completed questionnaire. 377 (51%) had received no LA nor RT (LA−RT−), 198 (27%) had received LA+RT−, 153 (21%) LA−RT+ and 14 patients (2%) had received both. LA+ women reported as higher lymphedema symptom scores (25 vs. 20, p=0.04). Women who were treated with RT reported higher gastrointestinal symptom scores vs. those who did not (23 vs. 16, p=0.04). HRQL scales were comparable between all four treatment groups. Conclusion: Despite distinct symptom patterns among women who received LA or RT, no clinically relevant differences in HRQL were observed when compared to women not receiving adjuvant therapy. Using LA to tailor adjuvant pelvic radiotherapy and prevent over-treatment in low-risk patients cannot be recommended. [Copyright &y& Elsevier]

Abstract: ‘Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)’ is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. PROFILES contains a large web-based component and are linked directly to clinical data from the population-based Eindhoven cancer registry. This paper describes the rationale and design of PROFILES. The primary aims of studies that use the PROFILES registry are: (1) psychosocial risk and outcome assessment to identify patients at high risk for poor physical and mental health outcomes, (2) to analyse mediating mechanisms to better understand the biological and behavioural factors associated with cancer treatment outcomes, and (3) to evaluate physical and psychosocial care needs of cancer survivors. PROFILES is a tool that enables data collection management; from inviting patients to participation in studies, to collecting patient-reported outcomes data via web-based or mailed questionnaires and linking these data with clinical data. The availability of a control cohort of approximately 2000 persons from the general population who complete the same basic questionnaire annually will provide the opportunity to estimate the unique impact of cancer, beyond that of normal ageing and comorbidities. Raw data from the PROFILES registry will be available for non-commercial scientific research, subject to study question, privacy and confidentiality restrictions, and registration (www.profilesregistry.nl). [Copyright &y& Elsevier]

Abstract: Aim: The aim of the present study was to generate Dutch reference data for the EORTC QLQ-C30 and for five sexuality items from the EORTC QL-item bank. Furthermore, to evaluate the relative impact of self-reported health problems on these outcomes and compare the Dutch normative EORTC QLQ-C30 overall QoL with available Scandinavian and German normative data. Methods: QLQ-C30 and sexual item normative data were obtained from the Health and Health Complaints project from CentERdata. The CentERpanel is an online household panel consisting of more than 2000 Dutch households, representative of the Dutch-speaking population in the Netherlands. Results: The questionnaire was completed by 1731 (78%) CentERpanel members. For both men and women, functional health (except emotional functioning) decreased with age, and the symptoms pain and fatigue increased with age. Men scored statistically but never clinically significantly better on most functional scales than women. Men reported higher levels of sexual interest and activity than women. All subgroups of participants with health problems reported lower physical and role functioning and overall quality of life (QoL). Those with depression (n =79) reported functioning scores 20–30 points lower than participants without any condition. Dutch men and women reported high levels of overall QoL as compared to previously published Scandinavian and German normative data. Conclusion: Age, gender and other health problems are important when comparing QoL and sexuality among different cancer cohorts. Normative data on QoL and sexuality are needed to interpret QoL issues among the growing group of (long-term) cancer survivors. [Copyright &y& Elsevier]

Abstract: Background: Insight into co-morbidity and treatment effects is pivotal to improve quality of care for cancer patients. Objectives: To determine whether linkage of the Eindhoven Cancer Registry (ECR) and the PHARMO Record Linkage System (RLS) was technically feasible and to assess which patient-centric data would result from this linkage. Methods: The ECR records data on tumour stage and primary treatment of all newly diagnosed cancer patients in the southeastern Netherlands including co-morbidity at diagnosis, whereas the PHARMO RLS includes data from multiple linked observational databases such as data on drug utilisation (for both in- and out-patients, including chemotherapy), hospitalisations and clinical laboratory measurements. All patients who lived or had been living in the overlapping area served by the ECR and the PHARMO RLS during 1998–2006 were selected for linkage which was performed with probabilistic medical record linkage. Results: The linkage resulted in an ECR-PHARMO cohort of 40,004 cancer patients with a total of 42,767 primary tumours. The cancer patients in the linked ECR-PHARMO cohort were representatives for the cancer patients included in the total ECR during 1998–2006. Cancer patients included in the cohorts had a mean history of 5 years and a mean follow-up ranging from 2 to more than 4 years (dependent on the survival rate of the specific cancer type). Conclusions: Linkage of ECR and the PHARMO RLS creates the possibility to study patient-centric drug utilisation, health resources utilisation and their costs, in addition to the effectiveness and safety of pharmaceuticals in routine daily practice in cancer patients. [Copyright &y& Elsevier]

Abstract: Background: This study evaluated trends in adjuvant systemic treatment among breast cancer patients and analyzed the factors on which treatment choice was based. Patients and methods: Patients diagnosed with early stage breast cancer in 1990–2006 were selected from the registry of the Comprehensive Cancer Centre South (n =8261). The probability of receiving therapy was determined per characteristic for the periods 1990–1997, 1998–2001 and 2002–2006, separately. Results: The use of any adjuvant systemic treatment increased from 37% in 1990–1997 to 51% in 1998–2001 and 53% in 2002–2006 (p for trend < 0.0001). In the period 1990–1997, lymph node status (positive vs. negative: probability ratio (PR=25.8; 95% CI, 16.5–40.4) and age (⩾ 60 vs. ⩽ 35 years: PR=0.01; 95% CI, 0.00–0.02) were the main determinants of the likelihood of receiving chemotherapy. From 1998 onwards, age remained the most important factor in decreasing the likelihood of receiving chemotherapy. During 1990–1997 the use of hormonal therapy was mainly determined by positive lymph node status (PR=35; 95% CI, 25–49) and age (⩾ 70 vs. ⩽ 35 years: PR=9.3; 95% CI, 4.4–20), whereas positive hormone receptor status mainly affected hormonal therapy use (PR=17; 95% CI, 10–28) in the period 2002–2006. Marked differences were observed between hospitals in the adoption of adjuvant systemic treatment for node–negative patients. Conclusions: The impact of patient and tumour characteristics on treatment choice varied over time, reflecting major changes in the Dutch treatment guidelines. Patients older than 70 years received almost no chemotherapy. [Copyright &y& Elsevier]

To evaluate the influence of comorbid cardiovascular disease severity on health-related quality of life (HRQL) in men treated with radical prostatectomy (RP) or radiotherapy (RT) for early stage prostate cancer. Subjects ( n = 830) with non-metastatic disease who had been diagnosed in 2000–2002 were drawn from Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE). We evaluated the influence of cardiovascular disease (CVD) severity on generic and disease-specific HRQL before and 6, 12, 18, and 24 months after treatment with RP or RT. HRQL was measured with the SF-36 and the UCLA Prostate Cancer Index. Men with moderate ( n = 193) or severe ( n = 51) cardiovascular disease had worse pre-treatment HRQL than did men without CVD ( n = 293) ( P < 0.01); HRQL scores were worse in men referred for RT. During 24 months of follow-up, men with moderate or severe CVD had worse SF-36 physical and mental component summaries and worse bowel function at all time points ( P < 0.05). Men with severe CVD also experienced a slower recovery in physical function ( P = 0.03) and sexual functioning ( P = 0.02) than did men without CVD. Prostate cancer patients with moderate to severe CVD have worse HRQL during follow-up. Those with severe CVD recover their physical and sexual functioning more slowly after treatment. [ABSTRACT FROM AUTHOR]

Purpose: To compare the health-related quality of life (HRQOL) among 5–10-year survivors of Stage I-II endometrial (adeno-)carcinoma (EC) treated with surgery alone or surgery with external beam adjuvant radiotherapy (EBRT) and an age-matched norm population. Methods and Materials: A population-based, cross-sectional survey was conducted by the Eindhoven Cancer Registry. All patients were included who had been diagnosed with EC between 1994 and 1998 (n = 462). Information from the questionnaires returned was linked to data from the Eindhoven Cancer Registry on patient, tumor, and treatment characteristics. Results: Responses were received from 75% of the patients. The analyses were restricted to women with Stage I-II disease at diagnosis, treated with either surgery alone or surgery with adjuvant EBRT, and without recurrent disease or new primary malignancies (n = 264). The patients who had received adjuvant EBRT (n = 80) had had a significantly higher tumor stage and grade at diagnosis (p < 0.0001) and a longer mean time since diagnosis (p = 0.04). Age, number of comorbid diseases, current marital status, nulliparity, education, and occupation were similar for both treatment groups. On multivariate analyses, adjuvant EBRT was independently and negatively associated with the vitality and physical and social well-being scale scores. The HRQOL scores of both treatment groups, however, were similar to those of an age-matched norm population. Conclusion: In general, the HRQOL of EC survivors is good. EC survivors treated with surgery alone had a better HRQOL than women treated with surgery and adjuvant EBRT, although for both groups, the HRQOL was in the range of the norm population. [Copyright &y& Elsevier]

To evaluate whether older persons using angiotensin-converting enzyme (ACE) inhibitors have a larger lower extremity muscle mass (LEMM) than users of other antihypertensive drugs. Cross-sectional analysis of data from the Health, Aging and Body Composition (Health ABC) Study. University of Tennessee, Memphis, and University of Pittsburgh clinics. A community-based sample of 2,431 well functioning participants of the Health ABC, aged 70 to 79, who were free of heart failure, were selected according to use of antihypertensive medications: ACE inhibitors (n=197), β-blockers (n=169), thiazides (n=216), calcium-channel blockers (n=340), or none (n=1,509). LEMM, assessed using dual-energy x-ray absorptiometry, compared by index drug in analysis of variance models unadjusted and adjusted for demographics, study site, height, body fat, physical activity, blood pressure, coronary artery disease, diabetes mellitus, and chronic pulmonary disease. LEMM significantly differed across the study groups, being larger in users of ACE inhibitors than in users of other drugs (unadjusted and adjusted models). LEMM was comparable in users of ACE inhibitors and no drug users. A trend toward larger LEMM was also observed in sex- and ethnicity-stratified analyses and in the subgroup of noncoronary hypertensive participants. In older persons, use of ACE inhibitors is associated cross-sectionally with larger LEMM. This finding suggests a possible explanation of the benefits of ACE inhibitors in wasting syndromes. If confirmed in longitudinal studies, this pharmacological action might have important implications for the prevention of physical disability in older patients with hypertension. [ABSTRACT FROM AUTHOR]

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. 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. 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). 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. • Reduced follow-up does not compromise satisfaction with care or worry. • Patients prefer the schedule of reduced follow-up. • Reduced follow-up care may be the new standard for endometrial cancer. • Follow-up should be tailored to meet individual patient needs in case of worry. • Findings may be relevant for other low-risk cancers. [ABSTRACT FROM AUTHOR]

Purpose: Cancer care team attitudes towards distress screening are key to its success and sustainability. Previous qualitative research has interviewed staff mostly around the startup phase. We evaluate oncology teams' perspectives on psychosocial distress screening, including perceived strengths and challenges, in settings where it has been operational for years. Methods: We conducted, transcribed, and analyzed semi-structured interviews with 71 cancer care team members (e.g., MDs, RNs, MSWs) at 18 Commission on Cancer-accredited cancer programs including those serving underrepresented populations. Results: Strengths of distress screening identified by participants included identifying patient needs and testing provider assumptions. Staff indicated it improved patient-provider communication and other aspects of care. Challenges to distress screening included patient barriers (e.g., respondent burden) and lack of electronic system interoperability. Participants expressed the strengths of distress screening (n = 291) more than challenges (n = 86). Suggested improvements included use of technology to collect data, report results, and make referrals; complete screenings prior to appointments; longitudinal assessment; additional staff training; and improve resources to address patient needs. Conclusion: Cancer care team members' perspectives on well-established distress screening programs largely replicate findings of previous studies focusing on the startup phase, but there are important differences: team members expressed more strengths than challenges, suggesting a positive attitude. While our sample described many challenges described previously, they did not indicate challenges with scoring and interpreting the distress screening questionnaire. The differences in attitudes expressed in response to mature versus startup implementations provide important insights to inform efforts to sustain and optimize distress screening. [ABSTRACT FROM AUTHOR]

Purpose: Chemotherapy-induced peripheral neuropathy ((CI)PN) becomes chronic in 30% of cancer patients. Knowledge of predictors of chronic (CI)PN and related impairments in health-related quality of life (HRQoL) is lacking. We examined the role of optimism in chronic (CI)PN severity and associated HRQoL in colorectal cancer (CRC) patients up to two years after diagnosis.Methods: CRC patients from a prospective cohort study participated, with sensory peripheral neuropathy (SPN) 1 year after diagnosis (n = 142). Multivariable regression analyses examined the cross-sectional association between optimism (measured by the LOT-R) and SPN severity/HRQoL (measured by the EORTC QLQ-CIPN20 and QLQ-C30), as well as the prospective association in a subsample that completed measures 2 years after diagnosis and still experienced SPN (n = 86).Results: At 1-year follow-up, higher optimism was associated with better global HRQoL, and better physical, role, emotional, cognitive, and social functioning (all p < .01). Optimism at year one was also prospectively associated with better global HRQoL (p < .05), and emotional and cognitive functioning at 2-year follow-up (both p < .01). Optimism was not related to self-reported SPN severity. Significant associations were retained when controlling for demographic/clinical variables, and became non-significant after controlling for depressive and anxiety symptoms.Conclusions: Optimism and depressive and anxiety symptoms are associated with HRQoL in CRC patients with chronic (CI)PN. Future research may illuminate the mechanisms that these factors share, like the use of (non)adaptive coping styles such as avoidance and acceptance that may inform the design of targeted interventions to help patients to adapt to chronic (CI)PN. [ABSTRACT FROM AUTHOR]

Background: Support for health‐related quality of life (HRQOL) is an essential part of cancer care in the final stages of life, yet empirical guidance regarding HRQOL and symptom trajectories is lacking. Aim: To assess the change in HRQOL and symptom burden in the last year of life in patients with advanced cancer and its association with health care–related factors, cancer‐specific treatment, and comorbidity. Methods: A prospective, multicenter, observational study in patients with advanced cancer (eQuiPe). Three monthly questionnaires included European Organization for Research and Treatment of Cancer Quality of Life‐C30 and reported continuity of care. Multivariable mixed‐effects analysis was used to assess the association between HRQOL and health care–related factors. Results: A total of 762 deceased patients were included with a mean age of 66 (SD, 10) years and 52% were male. The most common primary tumors were lung (29%), colorectal (20%), and breast cancer (13%). Mean overall HRQOL decreased in the last 9 months of life, with the greatest decrease in the last 3 months (β –16.2). Fatigue, pain, appetite loss, dyspnea, constipation, and nausea worsened significantly in the last year of life. Multimorbidity (β –7.5) and a better reported continuity of care (β 0.7) were both significantly associated with the trajectory of HRQOL. Conclusion: Mean overall HRQOL begins to decline 9 months before death, highlighting the need for early identification and (re)assessment of different symptoms as aspects of HRQOL follow different trajectories. Multimorbidity and reported continuity of care may be associated with the trajectory of HRQOL. Longitudinal results from the eQuiPe study show that the mean health‐related quality of life begins to decline 9 months before death in patients with advanced cancer. Higher perceived continuity with care is associated with an attenuated decline in health‐related quality of life. [ABSTRACT FROM AUTHOR]

Objective: Advanced cancer has a major impact on both patients and their relatives. To allow for personalized support, it is important to recognize which relatives will experience a decline in emotional functioning during the patient's last year of life, when this decline will occur, and what factors are associated with it. This study aimed to examine the trajectory of emotional functioning of relatives during that time and the characteristics associated with changes in this trajectory. Methods: A prospective, longitudinal, multicenter, observational study in patients with advanced cancer and their relatives was conducted (eQuiPe). We analyzed relatives' changes in emotional functioning in the patient's last year using the EORTC QLQ‐C30 and assessed associations with sociodemographic and care characteristics using multivariable mixed‐effects analysis. Results: 409 relatives completed ≥1 questionnaires during the patient's last year of life. Mean age was 64 years, 61% were female and 75% were the patient's partner. During this year, mean emotional functioning declined significantly over time from 73.9 to 64.6 (p = 0.023, effect size = 0.43). The type of relationship between relatives and patients (p = 0.002), patient' sleep problems (p = 0.033), and continuity of care (p = 0.002) were significantly associated with changes in emotional functioning. Conclusions: Relatives' emotional functioning declined during the patient's last year of life. Support for them, especially partners and relatives of patients with sleep problems, is important. Relatives who experienced more continuity of care had a less steep decline in emotional functioning. [ABSTRACT FROM AUTHOR]

Purpose: Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with a poorer quality of life of patients, but research on its association with the well-being of relatives is scarce. The aim of this systematic literature review was to evaluate the association between potentially inappropriate end-of-life cancer care and relatives’ well-being. Methods: We conducted a systematic search and review, and reported according to the PRISMA guideline, on the association between potentially inappropriate end-of-life cancer care and well-being of relatives before and after the death of their loved one. Pubmed, PsycInfo, Embase, and CINAHL were searched for studies published from January 2000 to July 2022. Studies’ quality was assessed using the Critical Appraisal Checklists from the Joanne Briggs Institute (JBI). Results: We identified eight studies including 10,062 relatives (59–79% female, mean age 46–61 years, 29–72% partner). Potentially inappropriate end-of-life cancer care was associated with poorer well-being of relatives including lower quality of life, higher burden of depressive symptoms, more regret, and more feelings of unpreparedness for the patient’s death. Conclusion: Potentially inappropriate cancer care at the end-of-life is associated with poorer well-being of relatives before and after the death of their loved one. This emphasizes the importance of avoiding potentially inappropriate end-of-life cancer care, as it is both associated with poorer outcomes for relatives and patients. However, the number of studies examining this association is small, and more research is needed in this area. [ABSTRACT FROM AUTHOR]

Background: In efforts to improve the implementation of survivorship care plans (SCPs), the authors assessed whether the impact of SCPs on patient-reported outcomes differed between patients with an information-seeking coping style (monitoring) versus those with an information-avoiding coping style (blunting).Methods: In the Registration System Oncological Gynecology (ROGY) Care Trial, 12 hospitals in the Netherlands were randomized to deliver SCP care or usual care. All patients with newly diagnosed endometrial and ovarian cancer in the SCP care arm received an SCP that was generated automatically by their oncology provider through the web-based ROGY registration system. Outcomes (satisfaction with information provision and care, illness perceptions, and health care use) were measured directly after initial treatment and after 6, 12, and 24 months. Information coping style was measured at 12 months after initial treatment.Results: Among patients who had a monitoring coping style (N = 123), those in the SCP care arm reported higher satisfaction with information provision (mean score: 73.9 vs 63.9, respectively; P = .04) and care (mean score: 74.5 vs 69.2, respectively; P = .03) compared with those in the usual care arm. Among patients who had a blunting coping style (N = 102), those in the SCP care arm reported a higher impact of the disease on life (mean score: 5.0 vs 4.5, respectively; P = .02) and a higher emotional impact of the disease (mean score: 5.4 vs 4.2, respectively; P = .01) compared with those in the usual care arm.Conclusions: SCPs may be beneficial for patients who desire information about their disease, whereas SCPs may be less beneficial for patients who avoid medical information, suggesting a need for tailored SCP delivery to improve survivorship care. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to the article "Cancer Survivors and Unemployment: A Meta-Analysis and Meta-Regression," by A. G. de Boer and his colleagues in the 2009 issue.

Objective: To examine the association between satisfaction with perceived information provision during diagnosis and treatment and supportive care needs in ovarian cancer survivors.Methods: In 2012, women (n = 348) diagnosed with ovarian cancer, as registered between 2000 and 2010 in the Netherlands Cancer Registry, received a questionnaire including questions on the perceived level of, and satisfaction with, information received (EORTC QLQ-INFO25) and supportive care needs (Cancer Survivors' Unmet Needs Measure).Results: Of 348 women, 191 (55%) responded. Of all participants, 35% were not satisfied (n = 65) with the perceived amount of information received. Participants who were satisfied with the amount of information reported significantly higher levels of perceived information on disease, medical tests, treatment, and other services. Patients not satisfied with information provision had a higher total number of needs and a higher number of unmet needs than women satisfied with information provision. Multivariable linear regression analysis showed that satisfaction with information provision was negatively associated with the total number of unmet needs (β = -0.20, P = .03) after adjustment for potential confounding clinical and sociodemographic factors.Conclusion: Ovarian cancer survivors satisfied with the information provision during treatment reported fewer unmet needs during survivorship. Optimization of information provision for ovarian cancer patients during initial diagnosis and treatment may contribute to a decrease in unmet needs during survivorship. [ABSTRACT FROM AUTHOR]

Background: Follow-up care for a growing population of survivors of lymphoma and chronic lymphocytic leukemia (CLL) together with the adverse effects these survivors may experience as a result of their cancer and treatment have led to more pressure being placed on health care services. The objectives of the current study were to: 1) compare the use of medical care services by survivors with that of a normative population; 2) evaluate the use of medical and psychosocial care services among distressed and nondistressed survivors; and 3) identify associated sociodemographic and clinical factors.Methods: Survivors of lymphoma and CLL diagnosed between 1999 and 2012 were selected via the population-based Netherlands Cancer Registry and completed the Hospital Anxiety and Depression Scale questionnaire and questions regarding health care. Outcomes were compared with an age-matched and sex-matched normative population.Results: A total of 1444 survivors responded (69%). Survivors of lymphoma and CLL contacted their general practitioner (3.8 vs 2.3; P<.001) and medical specialist (5.7 vs 1.6; P<.001) more often within the last year compared with a normative population. In addition, psychologically distressed survivors had even more medical contacts and received psychosocial care more often compared with nondistressed survivors. In addition to psychological distress, comorbidity, female sex, and older age were found to be associated with a greater use of medical services, whereas younger age was associated with receiving psychosocial care.Conclusions: Survivors of lymphoma and CLL, especially those who are psychologically distressed, report an increased use of health care services compared with a normative population. Further studies are needed to explore whether the use of widely applicable psychosocial interventions could reduce the frequency of medical contacts. Cancer 2018;124:3016-24. © 2018 Netherlands Comprehensive Cancer Organisation. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: To develop optimal cancer survivorship care programs, this study assessed the quality of prostate cancer follow-up care as experienced by patients shortly after completion of primary treatment. Methods: We surveyed 402 patients with localized prostate cancer participating in a randomized controlled trial comparing specialist versus primary care–based follow-up. For the current study, we used patient-reported data at the time of the first follow-up visit at the hospital, prior to randomization. We assessed patients' ratings of the quality of follow-up care using the Assessment of Patient Experiences of Cancer Care survey. This survey includes 13 scales about different aspects of care and an overall rating of care. Multivariable linear regression analysis was used to identify factors associated with perceived follow-up quality. Results: Patients reported positive experiences at first follow-up for 9 of 13 scales, with mean (M) scores ranging from 79 to 97 (on a 0–100 response scale). Patients reported most frequently (over 70%) suboptimal care regarding symptom management (84%; M = 44, SD = 37), health promotion (75%; M = 45, SD = 39), and physician's knowledge about patients' life (84%; M = 65, SD = 23). Overall, patients' lower quality of follow-up ratings were associated with younger age, higher education level, having more than one comorbid condition, having undergone primary surgery, and experiencing significant symptoms. Conclusion: Patients with prostate cancer are generally positive about their initial, hospital-based follow-up care. However, efforts should be made to improve symptom management, health promotion, and physician's knowledge about patients' life. These findings point to areas where prostate cancer follow-up care can be improved. [ABSTRACT FROM AUTHOR]

• Since the development of the International Consortium for Health Outcomes Measurements (ICHOM) lung cancer outcome set in 2016, there have been significant advances in the treatment of lung cancer. • The present study describes an updated, enriched, core outcome set (COS) to capture the patient perspective of the impact of lung cancer and (novel) treatments using a combination of patient-reported outcome (PRO) instruments and clinical data. • We used a consensus-based Delphi approach in a large international, multidisciplinary group of 146 stakeholders. • The final COS includes 64 outcomes, including case-mix factors, PROs related to health-related quality of life and clinical outcomes. • The COS will be implemented in clinical centres across Europe as part of the Health Outcomes Observatory (H2O) IMI project which is designed to drive value-based healthcare in Europe to optimize care delivery. In 2016, the International Consortium for Health Outcomes Measurement (ICHOM) defined an international consensus recommendation of the most important outcomes for lung cancer patients. The European Health Outcomes Observatory (H2O) initiative aimed to develop an updated patient-centered core outcome set (COS) for lung cancer, to capture the patient perspective of the impact of lung cancer and (novel) treatments using a combination of patient-reported outcome (PRO) instruments and clinical data as a means to drive value-based health-care. An international, expert team of patient representatives, multidisciplinary healthcare professionals, academic researchers and pharmaceutical industry representatives (n = 17) reviewed potential outcomes generated through literature review. A broader group of patients/patient representatives (n = 31), healthcare professionals / academic researchers (n = 83), pharmaceutical industry representatives (n = 26), and health authority representatives (n = 6) participated in a Delphi study. In two survey rounds, participants scored the relevance of outcomes from a preliminary list. The threshold for consensus was defined as ≥ 70 % of participants scoring an outcome as 'highly relevant'. In concluding consensus-meeting rounds, the expert multidisciplinary team finalized the COS. The preliminary list defined by the core group consisted of 102 outcomes and was prioritized in the Delphi procedure to 64. The final lung cancer COS includes: 1) case-mix factors (n = 27); 2) PROs related to health-related quality of life (HRQoL) (n = 25); 3) clinical outcomes (n = 12). Patient-reported symptoms beyond domains included in the ICHOM lung cancer set in 2016 were insomnia, nausea, vomiting, anxiety, depression, lack of appetite, gastric problems, constipation, diarrhoea, dysphagia, and haemoptysis. We will implement the lung cancer COS in Europe within the H2O initiative by collecting the outcomes through a combination of clinician-reported measures and PRO measures. The COS will support the adoption and reporting of lung cancer measures in a standardized way across Europe and empower patients with lung cancer to better manage their health care. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to identify feasible, evidence-based strategies to improve the use of Patient-reported outcome measures (PROMs) implemented in clinical oncology practice.A mixed-method study involving observations of consultations and semi-structured interviews with patients and healthcare professionals (HCPs) was conducted to identify facilitators and barriers for using PROMs; barriers and facilitators were structured following the Theoretical Domains Framework. For each barrier, evidence-based improvement strategies were selected using the Behaviour Change Techniques Taxonomy v1. Subsequently, improvement strategies were ranked on priority and feasibility by an expert panel of HCPs, information technology professionals, and PROMs implementation specialists, creating an implementation improvement strategy.Ten consultations were observed and 14 interviews conducted. Barriers for implementation included that the electronic health record and PROMs did not align to the individual needs of end users, the HCPs’ hesitance to advice patients about health-related quality-of-life issues, and a lack of consensus on which HCPs were responsible for discussing PROMs with patients. Forty-one improvement strategies were identified, of which 25 remained after ranking. These included: redesigning the PROMs dashboard by including patient management advice, enhancing patient support to complete PROMs, and clarifying HCPs’ responsibilities for discussing PROMs. Strategies currently considered less feasible were: improving user-friendliness of the patient portal due to technical constraints, aligning PROMs assessment frequency with clinical courses, and using baseline PROMs for early identification of vulnerabilities and supportive care needs. These will be studied in future research.Evidence-based improvement strategies to ensure lasting adoption of PROMs in clinical practice were identified.Methods: This study aimed to identify feasible, evidence-based strategies to improve the use of Patient-reported outcome measures (PROMs) implemented in clinical oncology practice.A mixed-method study involving observations of consultations and semi-structured interviews with patients and healthcare professionals (HCPs) was conducted to identify facilitators and barriers for using PROMs; barriers and facilitators were structured following the Theoretical Domains Framework. For each barrier, evidence-based improvement strategies were selected using the Behaviour Change Techniques Taxonomy v1. Subsequently, improvement strategies were ranked on priority and feasibility by an expert panel of HCPs, information technology professionals, and PROMs implementation specialists, creating an implementation improvement strategy.Ten consultations were observed and 14 interviews conducted. Barriers for implementation included that the electronic health record and PROMs did not align to the individual needs of end users, the HCPs’ hesitance to advice patients about health-related quality-of-life issues, and a lack of consensus on which HCPs were responsible for discussing PROMs with patients. Forty-one improvement strategies were identified, of which 25 remained after ranking. These included: redesigning the PROMs dashboard by including patient management advice, enhancing patient support to complete PROMs, and clarifying HCPs’ responsibilities for discussing PROMs. Strategies currently considered less feasible were: improving user-friendliness of the patient portal due to technical constraints, aligning PROMs assessment frequency with clinical courses, and using baseline PROMs for early identification of vulnerabilities and supportive care needs. These will be studied in future research.Evidence-based improvement strategies to ensure lasting adoption of PROMs in clinical practice were identified.Results: This study aimed to identify feasible, evidence-based strategies to improve the use of Patient-reported outcome measures (PROMs) implemented in clinical oncology practice.A mixed-method study involving observations of consultations and semi-structured interviews with patients and healthcare professionals (HCPs) was conducted to identify facilitators and barriers for using PROMs; barriers and facilitators were structured following the Theoretical Domains Framework. For each barrier, evidence-based improvement strategies were selected using the Behaviour Change Techniques Taxonomy v1. Subsequently, improvement strategies were ranked on priority and feasibility by an expert panel of HCPs, information technology professionals, and PROMs implementation specialists, creating an implementation improvement strategy.Ten consultations were observed and 14 interviews conducted. Barriers for implementation included that the electronic health record and PROMs did not align to the individual needs of end users, the HCPs’ hesitance to advice patients about health-related quality-of-life issues, and a lack of consensus on which HCPs were responsible for discussing PROMs with patients. Forty-one improvement strategies were identified, of which 25 remained after ranking. These included: redesigning the PROMs dashboard by including patient management advice, enhancing patient support to complete PROMs, and clarifying HCPs’ responsibilities for discussing PROMs. Strategies currently considered less feasible were: improving user-friendliness of the patient portal due to technical constraints, aligning PROMs assessment frequency with clinical courses, and using baseline PROMs for early identification of vulnerabilities and supportive care needs. These will be studied in future research.Evidence-based improvement strategies to ensure lasting adoption of PROMs in clinical practice were identified.Conclusion: This study aimed to identify feasible, evidence-based strategies to improve the use of Patient-reported outcome measures (PROMs) implemented in clinical oncology practice.A mixed-method study involving observations of consultations and semi-structured interviews with patients and healthcare professionals (HCPs) was conducted to identify facilitators and barriers for using PROMs; barriers and facilitators were structured following the Theoretical Domains Framework. For each barrier, evidence-based improvement strategies were selected using the Behaviour Change Techniques Taxonomy v1. Subsequently, improvement strategies were ranked on priority and feasibility by an expert panel of HCPs, information technology professionals, and PROMs implementation specialists, creating an implementation improvement strategy.Ten consultations were observed and 14 interviews conducted. Barriers for implementation included that the electronic health record and PROMs did not align to the individual needs of end users, the HCPs’ hesitance to advice patients about health-related quality-of-life issues, and a lack of consensus on which HCPs were responsible for discussing PROMs with patients. Forty-one improvement strategies were identified, of which 25 remained after ranking. These included: redesigning the PROMs dashboard by including patient management advice, enhancing patient support to complete PROMs, and clarifying HCPs’ responsibilities for discussing PROMs. Strategies currently considered less feasible were: improving user-friendliness of the patient portal due to technical constraints, aligning PROMs assessment frequency with clinical courses, and using baseline PROMs for early identification of vulnerabilities and supportive care needs. These will be studied in future research.Evidence-based improvement strategies to ensure lasting adoption of PROMs in clinical practice were identified. [ABSTRACT FROM AUTHOR]

Purpose: Insights into the severity of co-existing symptoms can help in identifying breast cancer survivors in need of symptom management. We aimed to identify subgroups of breast cancer survivors based on patterns of symptom severity, and characteristics associated with these subgroups.Methods: We selected surgically treated stage I-III breast cancer survivors 1-5 years post-diagnosis from the Netherlands Cancer Registry (N = 876). We assessed experienced severity of fatigue, nausea, pain, dyspnea, insomnia, appetite, constipation, diarrhea, and emotional and cognitive symptoms through the EORTC-QLQ-C30 Quality of Life Questionnaire on a scale of 0-100. We determined subgroups of survivors using latent class cluster analyses (LCA) based on severity of co-existing symptoms and compared their mean severity to the age-matched female reference population to interpret clinical relevance. We assessed subgroup characteristics by multinomial logistic regression analyses.Results: From 404 respondents (46%), three subgroups of survivors with distinct symptom severity were identified: low severity (n = 116, 28.7%), intermediate severity (n = 224, 55.4%), and high severity (n = 59, 14.6%). The low subgroup reported lower symptom severity than the general population; the intermediate subgroup reported a similar symptom severity, although scores for fatigue, insomnia, and cognitive symptoms were worse (small-medium clinical relevance). The high subgroup had worse symptom severity (medium-large clinical relevance). Compared to the intermediate subgroup, one (RRR: 2.75; CI: 1.22-6.19; p = 0.015) or more (RRR: 9.19; CI: 3.70-22.8; p =  < 0.001) comorbidities were significantly associated with the high subgroup. We found no associated treatment characteristics.Conclusion: We identified distinct subgroups of breast cancer survivors based on symptom severity, underlining the relevance of further exploring personalized follow-up strategies. [ABSTRACT FROM AUTHOR]

Background: Peripheral neuropathy (PN) is a debilitating complication among colorectal cancer (CRC) survivors that can become chronic. No large-scale study has yet analyzed correlates in multivariable models. We did multivariable analyses to find correlates of PN. Methods: In 1,516 all-stage Dutch CRC survivors, cross-sectional data were collected on sensory, motor, autonomic, and total PN, sociodemographic (age, sex, education, employment, partner), clinical (time since diagnosis, tumor location, stage, chemotherapy, radiotherapy, comorbidities), lifestyle (alcohol, smoking, physical activity, body mass index), psychological factors (anxiety, depression, personality), and health-related quality of life (HRQoL). After multiple imputations, correlates were analyzed with linear regressions and eliminated with backward selection. Results: CRC survivors (69 years; 42% female) were on average 5 years post-diagnosis, and 28%–65% reported PN. PN was associated with older age, being male (sensory) or female (motor), shorter time since diagnosis, chemotherapy, comorbidities, anxiety, depression, and worse scores on HRQoL domains, and pain, nausea, vomiting, insomnia, constipation, and financial problems. Conclusions: In multivariable analyses, PN is affected by receiving chemotherapy, aging, sex, comorbidities, stress-related factors, and HRQoL in CRC survivors. Future PN-related studies can include these factors, and they can be examined in longitudinal studies to gain more knowledge about chronicity and severity of PN. [ABSTRACT FROM AUTHOR]

Purpose: Returning patient-reported outcomes to patients might aid patients in detecting symptoms and might facilitate early intervention. This descriptive study evaluates the use of an individual feedback report on patient-reported outcomes for colorectal cancer patients and aims to assess differences in patient, tumor, and treatment characteristics and cohort retention between patients who opt and do not opt for the feedback report.Methods: Patients with colorectal cancer participating in the nationwide Prospective Dutch ColoRectal Cancer Cohort, who filled in questionnaires digitally between June 2018 and January 2019, were included. Participants were given the option to receive a feedback report at baseline, 3, 6, and 12 months. The usefulness, content, and layout of the feedback report were evaluated. Differences in patient, tumor, and treatment characteristics, patient-reported outcomes, and cohort retention at subsequent questionnaires between participants who did and did not opt for feedback were assessed.Results: A total of 484 participants were included of whom 293 (61%) opted for feedback. The feedback report was considered useful by 92%. No differences in patient, tumor, and treatment characteristics, and patient-reported outcomes were found between participants who did and did not opt for feedback. The response rate was higher among patients who opted for feedback compared to patients who did not opt for feedback at T3 (84 vs 74%), but not at T6 and T12.Conclusion: The feedback report was used by 6 out of 10 patients. The feedback report was considered valuable and associated with a higher subsequent response rate. [ABSTRACT FROM AUTHOR]

Background: During and after systemic therapy, patients with high risk and advanced melanoma experience challenges regarding cancer-related symptoms, treatment-related adverse events, and an impact of these symptoms on their physical and psychosocial well-being. Few studies have investigated the specific needs of these patients and the potential role of eHealth applications in meeting those needs.Objective: To explore the supportive care and information needs of high risk and advanced melanoma patients, and how these needs can be supported by eHealth applications.Methods: In this qualitative study, semi-structured interviews with high risk and advanced melanoma patients during or after systemic treatment were conducted to understand their needs and requirements as possible end-users of mobile eHealth applications. Interview transcripts were independently coded and thematically analyzed.Results: Thirteen participants consented to be interviewed, aged 31 to 71 years. Nearly all patients (n = 12, 92%) experienced unmet information and supportive care needs during and after active treatment. Patients expected to value eHealth applications that facilitate information gathering, wellbeing interventions, and symptom management. The majority of patients (n = 10, 77%) anticipated various advantages from using an eHealth application, including increased autonomy, higher quality of life, and improved disease self-management.Discussion: High risk and advanced melanoma patients have unmet supportive care and information needs during and after systemic treatment. The use of eHealth applications might be an effective way to meet these unmet needs. Patients anticipate a variety of advantages from using these applications, including deriving various benefits from the use of these applications, such as enhanced autonomy. [ABSTRACT FROM AUTHOR]

Objective: We investigated how healthcare professionals (HPs) communicate personalized risks of treatment side-effects to patients with localized prostate cancer during consultations, and explored how these patients perceive and use such risks during treatment decision-making.Methods: Patient consultations with nurse practitioners and urologists discussing personalized risks of urinary incontinence after prostatectomy were audiotaped, transcribed, and coded. Patients (n = 27) were then interviewed to explore their perceptions and use of personalized side-effect risks.Results: HPs explained personalized risks by discussing risk factors, which was appreciated and recalled by patients. Personalized risks were typically communicated both numerically and verbally (70%). When using numbers, HPs always used percentages, but rarely used natural frequencies (14%). Uncertainty was disclosed in only 34% of consultations. One-third of patients used personalized risks in their treatment decision-making by either switching to another treatment or sticking to their initial preference.Conclusions: Patients value and use personalized side-effect risks during treatment decision-making. Clearly explaining the relationship between risk factors and personalized risk estimates may help patients understand and recall those. Practice implications HPs should not only give patients specific and precise numerical risk information, but should also put effort in explaining how the personalized side-effect risks are determined. [ABSTRACT FROM AUTHOR]

Simple Summary: Worldwide, there is an increased focus on reorganizing prostate cancer survivorship care. In this study, we describe for the first time a process evaluation as part of a randomized controlled trial that is currently comparing the effectiveness of specialist- versus primary care-based prostate cancer follow-up. We found that within an RCT context, 67% patients and their GPs were willing to receive/provide primary care-based follow-up. Patients who received primary care-based follow-up care experienced this to be more personal, efficient, and sustainable. However, patients, GPs, and specialists also indicated several challenges that are described in this study and should be addressed to enable a smooth transition of prostate cancer follow-up to primary care. Background: A randomized controlled trial (RCT) is currently comparing the effectiveness of specialist- versus primary care-based prostate cancer follow-up. This process evaluation assesses the reach and identified constructs for the implementation of primary care-based follow-up. Methods: A mixed-methods approach is used to assess the reach and the implementation through the Consolidated Framework for Implementation Research. We use quantitative data to evaluate the reach of the RCT and qualitative data (interviews) to indicate the perspectives of patients (n = 15), general practitioners (GPs) (n = 10), and specialists (n = 8). Thematic analysis is used to analyze the interview transcripts. Results: In total, we reached 402 (67%) patients from 12 hospitals and randomized them to specialist- (n = 201) or to primary care-based (n = 201) follow-up. From the interviews, we identify several advantages of primary care- versus specialist-based follow-up: it is closer to home, more accessible, and the relationship is more personal. Nevertheless, participants also identified challenges: guidelines should be implemented, communication and collaboration between primary and secondary care should be improved, quality indicators should be collected, and GPs should be compensated. Conclusion: Within an RCT context, 402 (67%) patients and their GPs were willing to receive/provide primary care-based follow-up. If the RCT shows that primary care is equally as effective as specialist-based follow-up, the challenges identified in this study need to be addressed to enable a smooth transition of prostate cancer follow-up to primary care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. ePRO collection optimizes survivorship care by providing insight into the patients' well-being and prioritizing their unmet needs during the whole trajectory from diagnosis to end-of-life. ePRO-symptom monitoring can contribute to timely health risk detection and subsequently allow earlier intervention. Detection is optimized by automatically generated alerts that vary from simple to complex and multilayered. Using ePRO-symptoms during in-hospital consultation enhances the patients' conversation with the health care provider before making informed decisions about treatments, other interventions, or self-management. ePRO(-symptoms) entail specific implementation issues and complementary ethics considerations. The latter is due to privacy concerns, digital divide, and scarcity of adequately representative data for particular groups of patients. [ABSTRACT FROM AUTHOR]

Background. Chemotherapy-induced alopecia is a frequently occurring side effect of cancer treatment with a high psychological impact which can be prevented by scalp cooling. With this multi-centre patient series we estimated the results of scalp cooling for currently used chemotherapies to provide patient information and we identified characteristics associated with the results. Material and methods. The Dutch Scalp Cooling Registry collected data on scalp-cooled patients in 28 Dutch hospitals. Nurses and patients completed questionnaires on patients, chemotherapy and scalp cooling characteristics. Logistic regression analysis was used to examine associated characteristics of the scalp cooling result. Results. Overall, 50% of the 1411 scalp-cooled patients did not wear a head cover during their last chemotherapy session. Patients were satisfied with the results in 8% of cases after TAC chemotherapy and up to 95% after paclitaxel treatment. Besides type of chemotherapy, higher dose and shorter infusion time, older age, female gender and non-West-European type of hair significantly increased the proportion head cover use. Hair length, quantity, chemical manipulation (dyeing, waving, colouring), wetting hair before scalp cooling, and treatment with chemotherapy ever before did not influence the degree of head covering among patients. Conclusions. Scalp cooling results as recorded in this open patient registry were positive for most regimens, justifying it's use by all eligible patients, except for those needing TAC. Lengthening infusion time may improve the results. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study was to evaluate the extent of internet access and use and patient characteristics associated with internet use. We also aimed to study when and at which sites cancer patients search for information, the self-reported effect on health care use, and patients' wishes with respect to future internet possibilities.Materials and Methods: We drew a sample of 390 patients diagnosed with breast (n = 128), prostate (n = 96), or gynecological (n = 89) cancer or lymphoma (n = 77) in four different hospitals in the period 2002-2004, who were 65 years or younger at diagnosis. These patients were sent a questionnaire that contained 45 questions about demographics and three broad applications of internet use: content, communication, community.Results: Of the 261 (75%) patients who responded, 60% used Internet by themselves, 9% via others, whereas 31% did not use the Internet. High education, young age, and high socio-economic status were all independently positively associated with internet use. Of the patients with complaints but pre-diagnosis, 41% searched the Internet for information about cancer daily to several times a week. After diagnosis, during treatment, and at follow-up, this was, respectively, 71%, 56%, and 4%. Although patients preferred to get reliable information from the Web site of their oncologist (88%), hospital (70%) or Dutch Cancer Society (76%), Web sites that are completely financed and created by pharmaceutical industries were mentioned most as source of information. Patients who used the Internet to find information about cancer felt themselves to be better informed about their disease (72%); only 3% thought that consulting the Internet increased the frequency of visiting their doctor, whereas 20% felt that information from the Internet influenced the treatment decision made by their doctor. Most patients who use the Internet would like to be able to access their own medical file (79%) or test results (81%) if possible.Conclusion: Many cancer patients use the Internet to find reliable information about their disease and treatment. Patient information centers from hospitals should be strongly encouraged to improve disease and treatment information facilities on their hospital Web site, especially since most patients view their oncologist still as the most important source of information. [ABSTRACT FROM AUTHOR]

Abstract: Background: The consequences of cancer and its treatment on health-related quality of life (HRQL) and health care utilisation among elderly long-term cancer survivors have rarely been studied. However, the impact can be different for older compared to younger patients due to the higher prevalence of comorbid diseases, a higher risk of treatment-related complications and because they often receive different therapies compared to younger patients. Therefore, this study addressed the following questions; do HRQL and health care utilisation differ between younger and elderly cancer survivors, and are those differences age or disease related. Methods: A population-based, cross-sectional survey among 1893 long-term survivors of endometrial cancer, prostate cancer and non-Hodgkin’s lymphoma was conducted using a cancer registry. HRQL was measured by the SF-36 and health care utilisation was measured with a self-reported questionnaire. Results were compared to a normative population. Patients with disease progression were excluded resulting in a total number of 1112 patients to be analysed. Results: Young non-Hodgkin lymphoma survivors (<70 years) reported lower vitality, bodily pain and general health compared to the normative population while older (⩾70 years) survivors did not differ from the norm. Young lymphoma survivors experienced better physical functioning compared to older survivors. Young endometrial cancer survivors experienced less bodily pain compared to the normative population while older survivors did not differ from the norm. Young endometrial cancer survivors experienced better physical and role functioning compared to older survivors. Young prostate cancer survivors reported less bodily pain compared to the norm while older survivors did not. Young prostate cancer survivors reported higher scores on physical functioning compared to older survivors. Age, comorbid diseases, educational level and current occupation influenced HRQL significantly. Both younger and older cancer survivors visited their medical specialist, but not their GP, significantly more often compared to the age-matched general Dutch population. Both younger and older cancer survivors only sporadically used additional care services after cancer treatment. Discussion: HRQL of older and younger survivors is comparable, with the exception of physical functioning which is lower in older survivors. This difference in physical functioning was probably not caused by cancer because physical functioning among cancer survivors did not differ much compared to an age-matched normative population. Both younger and older long-term cancer survivors visited their medical specialist often but only sporadically used additional care services after cancer treatment. [Copyright &y& Elsevier]

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. In a sample of 1330 survivors, fatigue is found to be the most central symptom (ie, the symptom most strongly connected to other symptoms) in the network with moderate direct relationships with emotional symptoms, cognitive symptoms, appetite loss, dyspnea, and pain. Connections between fatigue and emotional symptoms, appetite loss, dyspnea, and pain were consistently found across all cancer types (colorectal cancer, breast cancer, ovarian cancer, thyroid cancer, chronic lymphocytic leukemia, Hodgkin lymphoma, and non‐Hodgkin lymphoma, n = 190 for each group), treatment regimens, and short‐term and long‐term survivors. [ABSTRACT FROM AUTHOR]

Objective: To determine whether or not decision aid (DA) use influences treatment decisions in patients with low and intermediate risk prostate cancer (PC). Patients and methods: In a cluster randomized controlled trial, patients were randomized to either DA use (DA group) or no DA use (control group). Between 2014 and 2016, newly diagnosed patients with low or intermediate risk PC were recruited in 18 hospitals in the Netherlands. DA users had access to a web-based DA that provided general PC information, PC-treatment information, and values clarification exercises to elicit personal preferences towards the treatment options. Control group patients received care as usual. Differences in treatment choice were analysed using multilevel logistic regressions. Differences in eligible treatment options between groups were compared using Pearson Chi-square tests. Results: Informed consent was given by 382 patients (DA group N = 273, control group N = 109). Questionnaire response rate was 88% (N = 336). Active surveillance (AS) was an option for 38%, radical prostatectomy (RP) for 98%, external beam radiotherapy (EBRT) for 88%, and brachytherapy (BT) for 79% of patients. DA users received AS significantly more often than control group. Patients (29 vs 16%, p = 0.01), whereas the latter more often chose BT (29 vs 18%, p < 0.01). No differences were found between groups regarding RP and EBRT. DA users who were not eligible for AS, received surgery more often compared to the control group (53 vs 35%, p = 0.01). Patient and disease characteristics were evenly distributed between groups. Conclusion: DA-using PC patients chose the AS treatment option more often than non-DA-using patients did. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Health policy and planning depend on quantitative data of disease epidemiology. However, empirical data are often incomplete or are of questionable validity. Disease models describing the relationship between incidence, prevalence and mortality are used to detect data problems or supplement missing data. Because time trends in the data affect their outcome, we compared the extent to which trends and known data problems affected model outcome for breast cancer. Methods: We calculated breast cancer prevalence from Dutch incidence and mortality data (the Netherlands Cancer Registry and Statistics Netherlands) and compared this to regionally available prevalence data (Eindhoven Cancer Registry, IKZ). Subsequently, we recalculated the model adjusting for 1) limitations of the prevalence data, 2) a trend in incidence, 3) secondary primaries, and 4) excess mortality due to non-breast cancer deaths. Results: There was a large discrepancy between calculated and IKZ prevalence, which could be explained for 60% by the limitations of the prevalence data plus the trend in incidence. Secondary primaries and excess mortality had relatively small effects only (explaining 17% and 6%, respectively), leaving a smaller part of the difference unexplained. Conclusion: IPM models can be useful both for checking data inconsistencies and for supplementing incomplete data, but their results should be interpreted with caution. Unknown data problems and trends may affect the outcome and in the absence of additional data, expert opinion is the only available judge. [ABSTRACT FROM AUTHOR]

Previous reports highlight the greater number of side effects that women experience during cancer treatment, but little is known about sex differences in symptoms and functioning in long-term survivors. We investigated sex differences in the prevalence of physical (EORTC QLQ-C30) and emotional symptoms (Hospital Anxiety and Depression Scale) and loss of functioning (EORTC QLQ-C30) in 5339 cancer survivors (55% males). General linear models were computed to assess the differences in symptoms and functioning between female and male cancer survivors and between survivors and an age-matched reference population. The direct comparison between female and male cancer survivors identified more symptoms, such as nausea and vomiting (M = 5.0 versus. 3.2), insomnia (M = 26.1 versus. 15.9), anxiety (M = 5.2 versus. 4.2), and lower physical (M = 77.5 versus. 82.5) and emotional functioning (M = 83.4 versus. 86.3), in female survivors. However, comparison with an age-matched reference population demonstrated that several symptoms, such as fatigue, dyspnea, anxiety and depression, appeared to be more frequent in male patients. The investigation of functioning domains — compared with a reference population — highlighted further sex-specific differences. Female survivors experienced a moderate net loss in physical and cognitive functioning (−6.1 [95% CI = −8.1; −4,1] and −5.2 respectively [95% CI = −7; −3.5]), whereas male survivors displayed a significant net loss in role and social functioning compared to the reference population (−9.9 [95% CI = −11.2; −8.6] and −7.7 [95% CI = −9.6; −7.6] respectively). To adequately capture sex differences in symptoms and functioning in long-term cancer survivors, a comparison with a reference population should always be considered. In our study population, this adjustment highlighted a significant and unexpected long-term impact on male patients. Role and social functioning were especially impacted in male patients, emphasizing the need to further investigate these gendered domains. • Long-term cancer survivors report sex-specific symptoms and functional impairments. • Comparison with age-and sex-matched reference group showed more impairment in males. • Loss of role and social functioning in males could represent a loss of gender role. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYA), aged 18–39 years at first cancer diagnosis, are recognized as a distinct population within the oncology community due to the unique challenges they encounter including recognition, diagnosis, treatment, and monitoring of their disease. It is imperative for advances in the field of AYA oncology to pool data sources (patient-reported outcomes, clinical, treatment, genetic, and biological data) across institutions and countries and create large cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population. The Dutch COMPRAYA study aims to examine the incidence, risk factors, and mechanisms of impaired health outcomes (short- and long-term medical and psychosocial effects) over time among AYA cancer patients. The overarching aim is to provide a research infrastructure for (future) data analyses and observational retrospective/prospective ancillary studies and to expand data collection to other countries. Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens that differ from children and older adults. It is imperative for advances in the field of AYA oncology to pool data sources across institutions and create large cohorts to address the many pressing questions that remain unanswered in this vulnerable population. We will create a nationwide infrastructure (COMPRAYA) for research into the incidence, predictive/prognostic markers, and underlying mechanisms of medical and psychosocial outcomes for AYA between 18–39 years diagnosed with cancer. A prospective, observational cohort of (n = 4000), will be established. Patients will be asked to (1) complete patient-reported outcome measures; (2) donate a blood, hair, and stool samples (to obtain biochemical, hormonal, and inflammation parameters, and germline DNA); (3) give consent for use of routinely archived tumor tissue and clinical data extraction from medical records and registries; (4) have a clinic visit to assess vital parameters. Systematic and comprehensive collection of patient and tumor characteristics of AYA will support the development of evidence-based AYA care programs and guidelines. [ABSTRACT FROM AUTHOR]