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Simple Summary: This study provides an insight into newly diagnosed patients with MF on patients' expectations, quality of life, and treatment satisfaction. These data can be used for adequate expectation management and provide a rationale for further evaluation of treatment regimens in these patients. Background: Little is known about the impact of MF on quality of life (QoL) in newly diagnosed patients. Objectives: To describe the impact of the MF diagnosis on QoL, patient expectations, and treatment satisfaction over the first 6 months after diagnosis. Methods: Outcomes of this prospective cohort study of newly diagnosed MF patients conducted between 2020 and 2022 at the Leiden University Medical Center included the Skindex-29, RAND-12 Health Survey, degree of itch, pain, and fatigue (Visual Analogue Scale (VAS)), patient expectations, and Client Satisfaction Questionnaire-8 (CSQ-8), measured at baseline and after six months. Results: A total of 28 patients with MF were included. At baseline, 66% (n = 18) "strongly-totally" expected positive effects of the treatment. At the time of diagnosis, 28% of the patients (n = 8) were moderately to severely affected. There was no statistical change in the Skindex-29 score sum score (20 [10–34] vs. 20 [9–36]; p = 0.81) or in the other three subdomains, the RAND-12 scores, and the VAS itch, pain, and fatigue over time. Treatment satisfaction was high overall. Conclusion: Despite that the newly diagnosed MF patients anticipate a positive treatment effect, few improvements in QoL and symptom reduction were found. These data can be used for adequate expectation management and provide a rationale for further evaluation of treatment regimens in these patients. [ABSTRACT FROM AUTHOR]

Simple Summary: Sexuality remains an unspoken topic in the consulting room regarding testicular germ cell tumor (TGCT) patients in the adolescent and young adult (AYA) age. Little is known about the perspectives and concerns of these patients regarding sexuality. The PRICELESS-study explored these perspectives and concerns through individual interviews with 13 AYA patients treated for TGCT. Interviews revealed seven interacting and interconnected themes: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appears. Insights from this study can help healthcare professionals understand the underlying mechanisms and help to define topics for instrument development to support discussing sexuality. This study aimed to explore perspectives and concerns regarding sexuality among adolescents and young adults (AYAs) possibly experiencing late effects after testicular germ cell tumor (TGCT) treatment. A qualitative study was performed in which semi-structured interviews were held with thirteen AYAs from a center of expertise for TGCT in the Netherlands. Data were analyzed using Braun and Clark's thematic analysis method. Seven interacting and interconnected themes were found: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. Concerns about the desire to have children seem to play a significant role. In conclusion, TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appeared. These findings can help to make healthcare professionals aware of the underlying mechanisms and concerns about sexuality. Furthermore, insights can help to develop sexuality-themed items for a broader monitoring tool to structurally assess the late effects to support discussing sexuality. [ABSTRACT FROM AUTHOR]

There are two main coping styles regarding information seeking under medical threat; monitoring (information-seeking) and blunting (information-avoiding). The aim of this study is to (1) determine factors associated with a monitoring or blunting coping style in gastro-intestinal stromal tumour (GIST) patients and (2) investigate its association with psychological distress, cancer-related concerns, health-related quality of life and satisfaction with healthcare. In a cross-sectional study, Dutch GIST patients completed the shortened version of the Threatening Medical Situations Inventory to determine their coping style, the Hospital Anxiety and Depression Scale, Cancer Worry Scale, EORTC QLQ-C30 and part of the EORTC QLQ-INFO25. A total of 307 patients were classified as blunters (n = 175, 57%) or monitors (n = 132, 43%). Coping style was not associated with tumour or treatment variables, but being a female (OR 2.5; 95%CI 1.5–4.1; p= <.001) and higher educated (OR 5.5; 95%CI 2.5–11.9, p= <.001) were associated with higher odds of being a monitor. Monitors scored significantly lower on emotional functioning (mean = 86.8 vs mean = 90.9, p=.044), which is considered a trivial difference, more often experienced severe fear of cancer recurrence or progression (53.0% vs 37.7%, p=.007), and had more concerns about dying from GIST in the future (60.6% vs 47.4%, p=.025). Compared to blunters, monitors were less satisfied with the received healthcare and information, and would have liked to receive more information. GIST patients with a monitoring coping style experience a higher emotional burden. Additionally, monitors exhibit a greater need for information. Although this need for information could potentially result in fears and concerns, recognising it may also create an opening for tailored communication and information. [ABSTRACT FROM AUTHOR]

Patients with a rare cancer often face delays in their diagnostic and treatment trajectory, which may affect their work. In this study, we explored experiences and needs of: 1) patients with a rare cancer regarding return to work (RTW) and work retention, and 2) (health care) professionals (HCPs) regarding work-related support of patients with a rare cancer, throughout their disease trajectory. Semi-structured, in-depth interviews with working-age patients with a rare cancer (n = 16), and HCPs (n = 9) were conducted. During the interviews, a predefined topic list was used. Interviews were transcribed verbatim and analysed by means of thematic analysis. In total, three themes emerged from the interviews: 1) Awareness in patients and HCPs as a first step towards work, 2) Being/becoming an expert is a tough job, and 3) Enhancing employability through early personalized guidance. Patients with a rare cancer are confronted with uncertainties regarding work, due to an overall lack of knowledge and experience with these types of cancer. Raising awareness among patients, HCPs and employers about rare cancer and its implications, and providing timely individualized, supportive occupational care are required to improve rare cancer patients' ability to work. Recognizing and paying attention to the work-related consequences of a rare cancer diagnosis and its treatment is essential to facilitate rare cancer patients' occupational rehabilitation process. Multidisciplinary collaboration and involvement of HCPs specialized in rare cancer are required to provide suitable work-related support. A personalized approach is necessary to adequately address rare cancer patients' RTW and work retention needs. [ABSTRACT FROM AUTHOR]

Background Discordance between physicians' and patients' prognostic perceptions in advanced cancer care threatens informed medical decision-making and end-of-life preparation, yet this phenomenon is poorly understood. We sought to: (1) describe the extent and direction of prognostic discordance, patients' prognostic information preferences in cases of prognostic discordance, and physicians' awareness of prognostic discordance; and (2) examine which patient, physician, and caregiver factors predict prognostic discordance. Materials and Methods Oncologists and advanced cancer patients (median survival ≤12 months; n = 515) from 7 Dutch hospitals completed structured surveys in a cross-sectional study. Prognostic discordance was operationalized by comparing physicians' and patients' perceptions of the likelihood of cure, 2-year mortality risk, and 1-year mortality risk. Results Prognostic discordance occurred in 20% (likelihood of cure), 24%, and 35% (2-year and 1-year mortality risk) of physician-patient dyads, most often involving patients with more optimistic perceptions than their physician. Among patients demonstrating prognostic discordance, the proportion who preferred not knowing prognosis varied from 7% (likelihood of cure) to 37% (1-year mortality risk), and 45% (2-year mortality risk). Agreement between physician-perceived and observed prognostic discordance or concordance was poor (kappa = 0.186). Prognostic discordance was associated with several patient factors (stronger fighting spirit, self-reported absence of prognostic discussions, an information source other than the healthcare provider), and greater physician-reported uncertainty about prognosis. Conclusion Up to one-third of the patients perceive prognosis discordantly from their physician, among whom a substantial proportion prefers not knowing prognosis. Most physicians lack awareness of prognostic discordance, raising the need to explore patients' prognostic information preferences and perceptions, and to tailor prognostic communication. [ABSTRACT FROM AUTHOR]

This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment. [ABSTRACT FROM AUTHOR]

Simple Summary: Social eating problems may affect lives of people with head and neck cancer (HNC) during and after (chemo)radiotherapy treatment. This study aimed at investigating if people with HNC experience social eating problems from diagnosis up to 24 months after (chemo)radiotherapy and if their change over time is associated with swallowing, oral function, and nutritional status, in addition to the clinical, personal, physical, psychological, social, and lifestyle dimensions. We found that social eating problems worsened three months after treatment and improved to baseline levels up to 24 months. The change in social eating problems over time was associated with swallowing, nutritional status, tumor subsite, age, muscle strength, hearing problems, and depressive symptoms. Results are relevant to research and clinical practice for improving personalized supportive care targeting social eating problems. This study aimed at investigating the change in social eating problems from diagnosis to 24 months after primary (chemo)radiotherapy and its associations with swallowing, oral function, and nutritional status, in addition to the clinical, personal, physical, psychological, social, and lifestyle dimensions. Adult patients from the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) treated with curative intent with primary (chemo)radiotherapy for newly-diagnosed HNC and who provided baseline social eating data were included. Social eating problems were measured at baseline and at 3-, 6-, 12-, and 24-month follow-up, with hypothesized associated variables at baseline and at 6 months. Associations were analyzed through linear mixed models. Included patients were 361 (male: 281 (77.8%), age: mean = 63.3, SD = 8.6). Social eating problems increased at the 3-month follow-up and decreased up to 24 months (F = 33.134, p < 0.001). The baseline-to-24 month change in social eating problems was associated with baseline swallowing-related quality of life (F = 9.906, p < 0.001) and symptoms (F = 4.173, p = 0.002), nutritional status (F = 4.692, p = 0.001), tumor site (F = 2.724, p = 0.001), age (F = 3.627, p = 0.006), and depressive symptoms (F = 5.914, p < 0.001). The 6–24-month change in social eating problems was associated with a 6-month nutritional status (F = 6.089, p = 0.002), age (F = 5.727, p = 0.004), muscle strength (F = 5.218, p = 0.006), and hearing problems (F = 5.155, p = 0.006). Results suggest monitoring social eating problems until 12-month follow-up and basing interventions on patients' features. [ABSTRACT FROM AUTHOR]

Simple Summary: Patients with erythrodermic cutaneous T-cell lymphoma often experience severe symptoms. This study provides an insight into the impact of the disease, mogamulizumab treatment, and essential patient-reported outcomes. The data on patients' expectation, quality of life, and treatment satisfaction can especially be used in the counseling of future patients. Background: Erythrodermic cutaneous T-cell lymphoma (E-CTCL) is associated with a poor prognosis and severe symptoms. Objective: To establish insights into the quality of life (QoL), expectations, and treatment satisfaction of E-CTCL patients receiving mogamulizumab. Methods: Outcomes of this prospective cohort study conducted between September 2020 and August 2021 at the Leiden University Medical Center included the dermatology-specific QoL (Skindex-29), health-related QoL (RAND-12), degree of itch, pain, and fatigue (Visual Analogue Scale), patient's expectations, and treatment satisfaction (Client Satisfaction Questionnaire-8 (CSQ-8)), measured at baseline and after six months. Results: 13 patients with E-CTCL were included. Most patients anticipated a positive treatment effect on symptoms. Five patients (46%) improved one or more clinical categories regarding the symptoms domain, six (55%) regarding emotions, four (36%) regarding functioning, and four (36%) regarding the overall Skindex-29 score compared to baseline. The Mental Component Score clinically improved from 31 (IQR 29–51) at baseline to 38 (IQR 25–51). The median VAS itch improved significantly from baseline (8 (IQR 7–10) vs. 3 (IQR 1–8), p = 0.024). Most patients (n = 7) were "very satisfied" with their treatment. Limitations: There was a limited number of patients due to the rarity of the disease. Conclusion: In general, mogamulizumab has a favorable effect on biochemical- and dermatology-specific QoL and physical functioning in some patients, with high treatment satisfaction. Itch especially improved over time in most patients. The treatment satisfaction was generally high. Mogamulizumab seems to be an effective treatment that improves the QoL in patients with E-CTCL. [ABSTRACT FROM AUTHOR]

Aim: To explore (1) experiences of primary care physicians (PCPs) and oncological medical specialists about providing care to patients living longer with incurable cancer, and (2) their preferences concerning different care approaches (palliative support, psychological/survivorship care support). Background: At present, oncological medical specialists as well as PCPs are exploring how to improve and better tailor care to patients living longer with incurable cancer. Our previous study at the in-patient oncology unit showed that patients living longer with incurable cancer experience problems in how to deal with a prognosis that is insecure and fluctuating. To date, it could be argued that treating these patients can be done with a 'palliative care' or a 'survivorship/psychosocial care' approach. It is unknown what happens in actual medical practice. Methods: We performed multidisciplinary group meetings: 6 focus groups (3 homogenous groups with PCPs (n = 15) and 3 multidisciplinary groups (n = 17 PCPs and n = 6 medical specialists) across different parts of the Netherlands. Qualitative data were analysed with thematic analysis. Findings and conclusions: In the near future, PCPs will have an increasing number of patients living longer with incurable cancer. However, in a single PCP practice, the experience with incurable cancer patients remains low, partly because patients often prefer to stay in contact with their medical specialist. PCPs as well as medical specialists show concerns in how they can address this disease phase with the right care approach, including the appropriate label (e.g. palliative, chronic, etc.). They all preferred to be in contact early in the disease process, to be able to discuss and take care for the patients' physical and psychological well-being. Medical specialists can have an important role by timely referring their patients to their PCPs. Moreover, the disease label 'chronic' can possibly assist patients to live their life in the best possible way. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescent and young adult (AYA) cancer survivors diagnosed with cancer between ages 18–39 years often experience negative body changes, such as scars, amputation, hair loss, disfigurement, body weight changes, skin buns, and physical movement limitations. A negative body image could have negative implications for the self-esteem, self-identity, and social relationships of AYAs. Despite the possible long-term effects of cancer on body image, within the AYA literature, limited studies focus on AYA cancer survivors in a quantitative way. Therefore, the aim of our population-based cross-sectional study was to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA survivors 5–20 years after diagnosis. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future longitudinal research could help to identify when and how this support for AYA survivors can be best utilized. Adolescent and young adult (AYA) cancer survivors (18–39 years at diagnosis) often experience negative body changes such as scars, amputation, and disfigurement. Understanding which factors influence body image among AYA survivors can improve age-specific care in the future. Therefore, we aim to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA cancer survivors (5–20 years after diagnosis). A population-based cross-sectional cohort study was conducted among AYA survivors (5–20 years after diagnosis) registered within the Netherlands Cancer Registry (NCR) (SURVAYA-study). Body image was examined via the EORTC QLQ-C30 and QLQ-SURV100. Multivariable logistic regression models were used. Among 3735 AYA survivors who responded, 14.5% (range: 2.6–44.2%), experienced a negative body image. Specifically, AYAs who are female, have a higher Body Mass Index (BMI) or tumor stage, diagnosed with breast cancer, cancer of the female genitalia, or germ cell tumors, treated with chemotherapy, using more maladaptive coping strategies, feeling sexually unattractive, and having lower scores of health-related Quality of Life (HRQoL), were more likely to experience a negative body image. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future research could help to identify when and how this support for AYA survivors can be best utilized. [ABSTRACT FROM AUTHOR]

Introduction: An understanding of the long‐term psychosocial impact of paediatric haematopoietic stem cell transplantation (HSCT) for nonmalignant diseases is needed to optimize pre‐HSCT counselling, supportive care and long‐term follow‐up programmes after HSCT for this group of patients and caregivers. Methods: This qualitative study included 14 patients who underwent transplantation for a nonmalignant disease during childhood. In‐depth interviews were held online to explore patients' perspectives on the long‐term psychosocial impact of HSCT on their lives. The results were analysed based on the Grounded Theory approach. Results: Patients' median age at the time of the interview was 19 years (range: 14–49), and the median years after HSCT was 12 years (range: 3–33). Four main themes were identified: (1) doing okay, (2) experiencing persistent involvement with healthcare services, (3) influence on relationships with loved ones and (4) impact on the patient's life course. Subthemes extracted were doing okay, feeling of being cured, health limitations, sense of vulnerability, ongoing connection to the hospital, acceptance, friendship, family relations, development of own identity, not taking life for granted, social development, impact on (school) career and thinking about the future. Conclusions: Patients reported active coping strategies and resilience after this high‐impact treatment. The data highlight the need for patient‐adjusted supportive care, indicating more need for supportive care in the long‐term outpatient clinic. Patient Contribution: This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were presented during a patient conference day. [ABSTRACT FROM AUTHOR]

Objective: Around 40% of oncology patients receive inadequate pain treatment. A previous study reported pain interventions for only 70% of patients who reported unacceptable pain at the self‐service registration desk. The aim of this study is to gain insight in reasons for the absence of pain intervention among oncology patients who reported unacceptable pain. Methods: In this mixed methods study, 20 patients visiting the oncology outpatient clinic were selected via patient record assessment and interviewed about their perceived reasons for absence of pain intervention. Results: The reasons mentioned by the patients for absence of pain intervention included reluctance of the patient to discuss pain, no treatment preferred by the patient, focus of the physician on treatment of the disease, pain treatment difficult or impossible, and the perception that pain is an inevitable consequence of the cancer treatment. Almost 50% of the patients considered the physician responsible for the absence of pain intervention. Conclusion: In conclusion, a variety of reasons for absence of pain intervention are reported by patients, including patient‐related and health professional‐related reasons. Improvements can be made by promoting regular discussion of pain during hospital visits and empowerment of patients. [ABSTRACT FROM AUTHOR]

Objective: Psycho-oncological institutions offer specialized care for cancer patients. Little is known how this care might impact fatigue. This study aimed to identify fatigue trajectories during psychological care, examined factors distinguishing these trajectories and predicted fatigue severity after nine months of psychological care. Design: Naturalistic, longitudinal study of 238 cancer patients receiving psycho-oncological care in the Netherlands. Data were collected before initiation of psychological care (T1) and three (T2) and nine months (T3) afterwards. Latent class growth analysis, repeated measure analyses (RMA) and linear regression analysis were performed. Main Outcome Measures: Fatigue severity: Checklist Individual Strength. Results: Three fatigue trajectories were identified: high-(30%), moderate-(62%) and low-level fatigue (8%). While statistically significant decreases in fatigue were found, this decrease was not clinically relevant. RMA showed main effects for time for fatigue trajectories on depression, anxiety, personal control and illness cognitions. Fatigue severity and physical symptoms at T1, but not demographic or clinical factors, were predictive of fatigue severity at T3. Conclusions: Fatigue is very common during psycho-oncological care, and notably not clinically improving. As symptoms of fatigue, depression, anxiety and physical symptoms often cluster, supplementary fatigue treatment should be considered when it is decided to treat other symptoms first. [ABSTRACT FROM AUTHOR]

Objective: Patients with cancer can experience emotional consequences of reduced ability to eat, their impact is unknown. This study assesses the impact of these emotional consequences, and patients' satisfaction with healthcare professionals' (HCPs) support. Methods: A cross‐sectional survey was conducted among patients with head/neck, lung cancer and lymphoma, who experienced reduced ability to eat in the past year. Patients were recruited through patient organisations and hospitals. The questionnaire encompassed the impact of emotional consequences of reduced ability to eat (scale 1–10) and satisfaction with HCPs' support for reduced ability to eat (scale 1–10). The differences in patient characteristics between unsatisfied (Score < 6) and satisfied patients (score ≥6) were tested using independent t‐tests and the chi‐square or Fishers' exact tests. Results: Overall, 116 patients (48%) responded and 98 were included in the analyses. The most impactful emotional consequences were as follows: disappointment (mean ± SD: 8.31 ± 1.49), grief/sadness (7.90 ± 1.91), and anger (7.87 ± 1.41). Patients were less satisfied when more time had passed since their diagnosis (p < 0.002) and when they expected no improvements regarding their eating problems (p < 0.001). Conclusion: The impact of emotional consequences of reduced ability to eat is high. Support for emotional consequences is needed, especially for patients with reduced ability to eat, which persists in recovery and remission. [ABSTRACT FROM AUTHOR]

Monitoring quality of life (QoL) in patients with cancer can provide insight into functional, psychological and social consequences associated with illness and its treatment. The primary objective of this study is to examine the influence of cultural factors on the communication between the patient and the health care provider and the perceived QoL in women with breast cancer in Japan and the Netherlands. In Japanese and Dutch women with early breast cancer, the number, content and frequency of QoL-related issues discussed at the medical encounter were studied. Patients completed questionnaires regarding QoL and evaluation of communication with the CareNoteBook. The total number, frequency and content of QoL-related issues discussed differed between the two countries. Japanese women (n = 134) were significantly more reticent in discussing QoL-issues than the Dutch women (n = 70) (p <.001). Furthermore, Dutch patients perceived the CareNoteBook methodology significantly more positively than the Japanese patients (p <.001). Both groups supported the regular assessment via a CareNoteBook methodology. Japanese women are more reluctant in expressing their problems with the illness, its treatment and patient-physician communication than Dutch women. [ABSTRACT FROM AUTHOR]

To gain insight into (1) the unfulfilled instrumental and affective needs of Turkish-Dutch and Moroccan-Dutch older cancer patients/survivors, (2) the barriers perceived by healthcare professionals in fulfilling these needs, and (3) how the Health Communicator, a multilingual eHealth tool, can support the fulfillment of patients'/survivors' needs, and decrease professionals' barriers. We conducted a pre-implementation study of the Health Communicator using semi-structured interviews with Turkish-Dutch (n = 10; mean age = 69.10) and Moroccan-Dutch (n = 9; mean age = 69.33) older cancer patients/survivors, and held two focus groups with general practitioners (GPs; n = 7; mean age 45.14) and oncology nurses (ONs; n = 5; mean age = 49.60). Topic list consisted of questions related to needs and perceived barriers. Analysis was based on grounded theory. The acceptance of the Health Communicator was inquired by questions based on the concepts of the Technology Acceptance Model, and analyzed deductively. Patients/survivors reported unfulfilled needs concerning: (1) information about cancer (treatment), (2) information about the healthcare system, (3) possibilities regarding psychosocial support, and (4) doctor-patient relationship. Among professionals, the main perceived barriers were: (1) patients'/survivors' low health literacy and language barrier, (2) cultural taboo, (3) lack of insight into patients' instrumental needs, and (4) patients'/survivors' lack of trust in Dutch healthcare. Both patients/survivors and professionals thought that implementing the Health Communicator could be effective in fulfilling most of the needs and decreasing the barriers. However, a majority of the patients/survivors were hesitant regarding the use of it, because they found it too difficult to use. Professionals showed a positive intention towards using the Health Communicator. To enhance patient participation among older migrant cancer patients/survivors, the Health Communicator is, under certain conditions, a promising tool for fulfilling patients'/survivors' unfulfilled instrumental and affective needs and for bridging barriers perceived by professionals. [ABSTRACT FROM AUTHOR]

Objective: Chemotherapy-induced alopecia (CIA) is one of the most common and distressing side effects of chemotherapy treatment. This study aims to assess the illness perceptions of female patients dealing with CIA, and their associations with demographic and clinical characteristics, coping strategies, and quality of life. The secondary aim was to compare the illness perceptions of patients with CIA with other samples, to help elucidate the specific perceptions of patients with CIA. Method: Forty female patients at risk of severe hair loss due to chemotherapy treatment were included at the oncological daycare unit of a teaching hospital in the Netherlands. Patients were asked to complete the Brief-Illness Perception Questionnaire (B-IPQ) and the Hair Quality of Life (Hair-QoL) questionnaire. Results: Illness perceptions indicated that although patients understood their hair loss, they lacked being able to make sense of managing it, negatively impacting patients' lives. Psychological quality of life was significantly correlated with the B-IPQ domains: consequences, degree of concern, and emotional response. Social quality of life was significantly correlated with psychological quality of life. Patients with CIA felt significantly less able to manage their hair loss, compared to patients with breast cancer and psoriatic arthritis. Conclusion: As patients' beliefs of being able to manage their hair loss are important for adopting and maintaining adequate coping behaviors, additional effort of health care providers in fostering patients' sense of control is indicated, focusing on patients' strengths during and after chemotherapy treatment. In the context of developing interventions for patients with CIA, consequences, concern, and emotional response are the major dimensions that should be taken in account to help patients deal with hair loss. [ABSTRACT FROM AUTHOR]

Purpose: The aim was to investigate the level of self-perceived cognitive functioning and its associated factors among a large population-based cohort of cancer survivors and their matched controls. Methods: Data were obtained from population-based PROFILES registry cohorts, including colon, rectum, prostate or thyroid cancer, Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), chronic lymphocytic leukemia, multiple myeloma (MM), melanoma, or basal cell carcinoma (BCC)/squamous cell carcinoma (SCC). All patients completed the EORTC QLQ-C30 from which self-perceived cognitive functioning, fatigue, functioning, and global health status/quality of life (GHS/QoL) were used. The PROFILES registry data were linked with the Netherlands Cancer Registry to obtain sociodemographic and clinical data. Results: Six thousand seven hundred eighty-six survivors were included (response rate=76%). Survivors, except for melanoma and BCC/SCC, reported on average lower self-perceived cognitive functioning scores compared to their matched controls (all p's<0.01). Largest differences with the norm were observed in thyroid cancer, HL, NHL and MM, and younger survivors (<50 years). Survivors with lower emotional functioning and more fatigue were more likely to report impaired self-perceived cognitive functioning. Conclusion: Self-perceived impaired cognitive functioning is prevalent among a wide range of cancer survivors, especially among survivors <50 years. Approaches targeting cognitive problems including attention for co-occurring symptoms such as fatigue and emotional impairments are needed to improve care for these patients. Implications for Cancer Survivors: Cancer survivors and clinicians should be aware that impaired self-perceived cognitive functioning is a frequently reported consequence of cancer and its treatment among survivors of various cancer types. Clinicians can redirect survivors to a relevant healthcare provider or program to target cognitive problems. [ABSTRACT FROM AUTHOR]

The aim of this nationwide cohort study was to examine the course of symptoms and trajectories of health-related quality of life (HR-QoL) and psychological distress during follow-up and to identify vulnerable patients. Patients with pathological stage I–III colorectal cancer (CRC) between 2013 and 2018 were included. Baseline characteristics were collected from the Netherlands Cancer Registry, and patients completed the European Organisation for Research and Treatment of Cancer QLQ-C30/CR29, Hospital Anxiety and Depression Scale and low anterior resection syndrome (LARS) questionnaires at the baseline and subsequently at 3, 6, 12, 18 and 24 months. Latent class growth and multinomial logistic regression analyses were performed to outline 24-month trajectories in HR-QoL and distress and to identify predictive factors. : A total of 1535 patients with colon cancer or rectal cancer were included. Trajectory analysis of HR-QoL identified three patient classes: high HR-QoL (62.7%), improving HR-QoL (29.0%) and low HR-QoL (8.3%). The following patient groups were identified with having low distress (64.0%), moderate distress (26.9%) and high distress (9.1%). Around 13% of the total cohort had either persistent low HR-QoL or high psychological distress throughout follow-up. Patients belonging to this vulnerable group were significantly more likely to be female, to be younger aged, to have lower education, to have disease stage II–III or to have major LARS. Although most patients treated for stage I–III CRC fared well, a small but significant proportion of around 13% did not recover during follow-up and reported low HR-QoL and/or high psychological distress levels throughout. This study's findings should be taken into account when organising and selecting patients for tailored follow-up. • The number of patients with colorectal cancer (CRC) requiring follow-up increased. • Quality of life (QoL) and distress among recently diagnosed patients with CRC are unclear. • Most patients with stage I–III CRC did well and reported high QoL and low distress. • Trajectory analysis revealed vulnerable patient groups and identified predictive factors. • Patient-reported outcome measures should be used when personalising CRC follow-up. [ABSTRACT FROM AUTHOR]

Objective: Multiple myeloma (MM) is a rare and incurable disease. Because new treatments improved survival rates, return to work (RTW) became more relevant to MM patients of working age. Also, (health care) experts may be confronted with specific obstacles in guiding MM patients' RTW. Therefore, we aimed to qualitatively explore perspectives and experiences of MM patients and (health care) experts regarding RTW and participation at work. Methods: Semi‐structured interviews were conducted with patients (N = 9) and (health care) experts (N = 15). Interviews were transcribed verbatim and analysed using thematic analysis. Results: Four themes resulted from the interviews with patients and (health care) experts: (1) severity of diagnosis and treatment impact RTW, (2) step‐by‐step reintegration facilitates RTW, (3) meaning of work differs between MM patients and experts and (4) lack of tailored counselling by experts. Conclusion: Although MM patients' work ability may be limited due to the severity of diagnosis and side effects from treatment, most patients consider RTW important. Both patients and (health care) experts emphasise the benefits from early work ability assessment (in the hospital setting) and specialised RTW counselling, especially in those with physically demanding jobs. [ABSTRACT FROM AUTHOR]

Objective: Mesothelioma is a rare cancer with a poor prognosis caused by exposure to asbestos. Psychosocial support and care for mesothelioma patients and their carers is limited and not tailored to their specific needs. The aim of this study was to explore patients' and carers' needs and experiences regarding psychosocial support and their coping mechanisms dealing with psychosocial problems. Methods: A qualitative study was performed using semi‐structured interviews with both mesothelioma patients and their carers. Participants were recruited through two specialised hospitals and two patient organisations. All interviews were transcribed verbatim and thematically analysed. Results: Ten patients (70% male, mean age 67.7) and five carers (20% male, mean age 65) participated in the study. The main themes identified for patients were active coping, limited needs and limited knowledge and awareness about psychosocial support. The main themes for carers were passive coping and 'it's all about the patient'. Conclusion: Mesothelioma patients do not seem to have high needs for psychosocial support, whereas carers do. However, knowledge about and awareness of psychosocial support is low among mesothelioma patients. The findings from this study should be used to adjust guidelines for psychosocial support in mesothelioma patients and their carers. [ABSTRACT FROM AUTHOR]

Objective: To examine healthcare utilisation and adherence to colorectal cancer (CRC) follow‐up guidelines. Methods: A total of 2450 out of 3025 stage I‐III CRC survivors diagnosed between 2000 and 2009 completed the Hospital Anxiety and Depression Scale, SF‐12, EORTC QLQ‐CR38 and Fatigue Assessment Score questionnaires, in December 2010. Multivariable regression analyses were performed to identify predictors for increased follow‐up care (>1 visit than recommended by guidelines). Results: In the first follow‐up year, the average number of cancer‐related visits to the general practitioner and medical specialist was 1.7 and 4.2, respectively. More than 80% of the CRC survivors was comfortable with their follow‐up schedule, and 49–72% of them received follow‐up according to the guidelines. Around 29–47% was followed more than recommended. Simultaneously, around 4–14% of the CRC survivors received less follow‐up care than recommended. Survivors of stage III disease treated with chemotherapy received the most follow‐up care. In addition, lower socio‐economic status stoma and fatigue were associated with increased follow‐up care. Conclusion: CRC survivors were predominantly followed according to national guidelines. Increased follow‐up care is driven by advanced disease stage, chemotherapy, SES, stoma and fatigue. Future studies should investigate how increased follow‐up care use can be reduced, while still addressing patients' needs. [ABSTRACT FROM AUTHOR]

Background older people with cancer are at risk of complex and fluctuating health problems, but little is known about the extent to which their well-being changes in the last years of life. Objective to examine changes in physical, psychological and social well-being in the last 5 years of life of older people with cancer. Design prospective cohort study. Setting Belgium, the Netherlands. Participants people with a new primary diagnosis of breast, prostate, lung or gastrointestinal cancer, aged ≥70 years, life expectancy >6 months, were recruited from nine hospitals. We analysed data of deceased patients. Methods data were collected from participants around diagnosis, and after 6 months, 1, 3 and 5 years through structured questionnaires administered through interviews or as self-report. Outcomes were physical, emotional, social, role functioning (EORTC QLQ-C30), depressive symptoms (GDS-15), emotional and social loneliness (Loneliness Scale). We conducted linear mixed model analyses. Results analysing 225 assessments from 107 deceased participants (assessments took place between 1,813 and 5 days before death), mean age at baseline 77 years (standard deviation: 5.2), we found statistically significant deterioration in physical functioning (b  = 0,016 [95%confidence interval 0.009–0.023]), depressive symptoms (b  = −0,001 [−0.002 to 0.000]) and role functioning (b  = 0.014 [0.004–0.024]). Changes over time in emotional and social functioning and in social and emotional loneliness were smaller and statistically non-significant. Conclusions care towards the end of life for older people with cancer needs to put their social and psychological well-being at the centre, alongside physical needs. Future research should focus on understanding inter-individual variation in trajectories. [ABSTRACT FROM AUTHOR]

Purpose The aim of this research was to study the effectiveness on return to work (RTW) of an early tailored work-related support intervention in patients diagnosed with curative gastrointestinal cancer. Methods A multicenter randomized controlled trial was undertaken, in which patients were assigned randomly to the intervention or the control group (usual care). The intervention encompassed three psychosocial work-related support meetings, starting before treatment. Five self-reported questionnaires were sent over twelve months of follow-up. Primary outcome was days until RTW (fulltime or partial) and secondary outcomes included work status, quality of life, work ability, and work limitations. Descriptive analysis, Kaplan–Meier analysis, relative risk ratio and linear mixed models were applied. Results Participants (N = 88) had a mean age of 55 years; 67% were male and the most common cancer type was colon cancer (66%). Of the participants, 42 were randomized to the intervention group. The median time from sick leave until RTW was 233 days (range 187–279 days) for the control group, versus 190 days (range 139–240 days) for the intervention group (log-rank p = 0.37). The RTW rate at twelve months after baseline was 83.3% for the intervention group and 73.5% for the control group. Work limitations did statistically differ between the groups over time (p = 0.01), but quality of life and work ability did not. Conclusion Patients in the intervention group seem to take fewer days to RTW, albeit not to a statistically significant extent. Trial registration Trial NL4920 (NTR5022) (Dutch Trial Register https://www.trialregister.nl) [ABSTRACT FROM AUTHOR]

Background: The EORTC QLQ-C15-PAL is a shortened version of the widely used EORTC QLQ-C30. This questionnaire was developed to measure the symptoms and functional health of patients receiving palliative care. Objective: To enhance clinical interpretability of the EORTC QLQ-C15-PAL, our aim was to evaluate the sensitivity and specificity of thresholds for clinical importance developed previously for the QLQ-C30 when applied to the QLQ-C15-PAL scales. Design: Cross-sectional observational study. Setting/Subjects: Patients with cancer receiving any type of palliative treatment. Measurement: Patients completed the EORTC QLQ-C15-PAL and anchor items on limitations, worries, and need for help for each of the health domains covered by the questionnaire. The anchor items were summarized in a binary criterion for clinical importance to calculate the sensitivity and specificity of the thresholds for clinical importance. Results: In total, 225 patients participated in the study (mean age 64.5 years). Patients were recruited from Austria, Italy, the Netherlands, Poland, Spain, and the United Kingdom. The thresholds for clinical importance for the QLQ-C15-PAL scales showed a median sensitivity of 0.88 (range: 0.82 for sleep disturbances to 1.00 for dyspnea) and a median specificity of 0.74 (range: 0.54 for dyspnea to 0.89 for constipation). Conclusion: The thresholds for clinical importance showed high sensitivity and mostly high specificity in identifying clinically important symptoms and functional health impairments as assessed by the QLQ-C15-PAL. These thresholds will facilitate interpretation of EORTC QLQ-C15-PAL scores in daily clinical practice and clinical research. [ABSTRACT FROM AUTHOR]

What are the psychosocial support needs of prostate cancer (PCa) patients undergoing active surveillance (AS)? The preferred management strategy for low‐risk PCa (LR‐PCa) is AS. Patients remain under close surveillance to monitor disease progression. However, living with untreated disease has psychosocial implications. The objective of this study was to investigate the psychosocial support needs in PCa patients undergoing AS. According to Marzouk (2018) 30% of patients risk developing anxiety during the first year of AS. Parker (2015) and Tan (2016) suggest approximately 10% of AS‐patients request a change to active treatment, often based on anxiety. Pickles (2007) states that psychosocial support can effectively reduce anxiety and uncertainty. A literature based interview guide was used to conduct 17 semi‐structured interviews following an explorative qualitative approach. LR‐PCa patients, eligible for AS, were enrolled from two participating Dutch urology clinics experienced with AS. Written informed consent was obtained. Inclusion ended after attaining data saturation. The interviews were transcribed verbatim. NVIVO 10 was used for open coding. Participants expressed recurring uncertainty and anxiety caused by medical examinations, lower urinary tract symptoms and erectile dysfunction. Various effective and ineffective coping strategies were adopted by participants. The use of specific strategies was associated with patient‐physician relationship, locus‐of‐control and disease‐acceptation. Ineffective coping strategies seemed to impede resilience during stressful situations. Satisfactory decision‐making and disease‐acceptation were promoted by immediate availability of relevant, reliable information regarding disease characteristics and treatment options. Early‐stage reliable and relevant information, assessment and encouragement of effective coping strategies appear to be important psychosocial support needs during AS. Most participants in this study had spousal support and completed higher education. Future research should determine the generalizability of these findings in a more heterogeneous population. [ABSTRACT FROM AUTHOR]

Purpose. Desmoid-type fibromatosis (DTF) is a rare, nonmetastasising soft tissue tumour. Symptoms, unpredictable growth, lack of definitive treatments, and the chronic character of the disease can significantly impact health-related quality of life (HRQoL). We aimed at identifying the most important HRQoL issues according to DTF patients in two countries, in order to devise a specific HRQoL questionnaire for this patient group. Methods. DTF patients and healthcare providers (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues regarding diagnosis, treatment, follow-up, recurrence, living with DTF, healthcare, and supportive care experiences, according to their relevance. Descriptive statistics were used to calculate priority scores. Results. The most highly ranked issues by patients (n = 29) were issues concerning "tumour growth," "feeling that there is something in the body that does not belong there," and "fear of tumour growth into adjacent tissues or organs" with mean (M) scores of 3.0, 2.9, and 2.8, respectively (Likert scale 1–4). British patients scored higher on most issues compared to Dutch patients (M 2.2 vs. M 1.5). HCPs (n = 31) gave higher scores on most issues compared to patients (M 2.3 vs. M 1.8). Conclusion. This study identified the most relevant issues for DTF patients, which should be included in a DTF-specific HRQoL questionnaire. Additionally, we identified differences in priority scores between British and Dutch participating patients. Field testing in a large, international cohort is needed to confirm these findings and to devise a comprehensive and specific HRQoL questionnaire for DTF patients. [ABSTRACT FROM AUTHOR]

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children's lives. We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions. [ABSTRACT FROM AUTHOR]

Background There is an increasing number of quality indicators being reported publicly with aim to improve the transparency on hospital care quality. However, they are little used by patients. Knowledge on patients' preferences regarding quality may help to optimise the information presented to them. Objective To measure the preferences of patients with breast and colon cancers regarding publicly reported quality indicators of Dutch hospital care. Methods From the existing set of clinical quality indicators, participants of patient group discussions first assessed an indicator's suitability as choice information and then identified the most relevant ones. We used the final selection as attributes in two discrete choice experiments (DCEs). Questionnaires included choice vignettes as well as a direct ranking exercise, and were distributed among patient communities. Data were analysed using mixed logit models. Results Based on the patient group discussions, 6 of 52 indicators (breast cancer) and 5 of 21 indicators (colon cancer) were selected as attributes. The questionnaire was completed by 84 (breast cancer) and 145 respondents (colon cancer). In the patient group discussions and in the DCEs, respondents valued outcome indicators as most important: those reflecting tumour residual (breast cancer) and failure to rescue (colon cancer). Probability analyses revealed a larger range in percentage change of choice probabilities for breast cancer (10.9%-69.9%) relative to colon cancer (7.9%-20.9%). Subgroup analyses showed few differences in preferences across ages and educational levels. DCE findings partly matched with those of direct ranking. Conclusion Study findings show that patients focused on a subset of indicators when making their choice of hospital and that they valued outcome indicators the most. In addition, patients with breast cancer were more responsive to quality information than patients with colon cancer. [ABSTRACT FROM AUTHOR]

Purpose: To examine the role of differentiated thyroid cancer (DTC) patients' age in illness perceptions and psychological distress, and the potential moderating role of age in the relationship between illness perceptions and psychological distress. Methods: We used the Netherlands Cancer Registry to select all patients diagnosed with thyroid cancer between 1990 and 2008 (n = 568). Patients filled out the Hospital Anxiety and Depression Scale (HADS) and Brief Illness Perception Questionnaire. Levels of psychological distress and illness perceptions were compared between the different DTC survivor age groups (adolescents and young adults [AYAs; 18–39 years], middle-aged adults [40–64 years], and older survivors [65–84 years]). Results: Among 293 respondents with DTC, AYAs (n = 84) had more faith in the fact that their treatment can help them, and reported a stronger belief in understanding their illness compared to middle-aged (n = 172) and older adults (n = 37). No differences regarding age were seen on the other six illness perception subscales. AYAs did report significantly less distress (HADS caseness = 13.8%) compared to middle-aged (28.7%) and older adults (22.2%). Most illness perception subscales were associated with distress and the associations with age were mixed. AYAs and older patients who believed that their illness would continue for a long time reported more distress, but this association was not found for the middle-aged group. Conclusion: Illness perceptions play a key role in the experience of distress years after diagnosis and this is related to age. AYA and older cancer patients may be particularly vulnerable to distress related to maladaptive cancer-related beliefs/perceptions. [ABSTRACT FROM AUTHOR]

Purpose: Negative impact of cancer on sexuality is widely known. In adolescents and young adults with cancer (AYA; 15–39 years), treatment can even have a bigger impact as it may interfere with sexual development. AYAs report unmet psychosexual needs, like inadequate support from health care professionals (HCPs). The aim of this study was to determine preferences of AYAs regarding communication about intimacy and sexuality and examine discrepancies between AYA and HCP. Methods: A cross-sectional survey was conducted among AYAs and HCPs in the Netherlands. Results: Communication about sexuality was considered important by >90% of AYAs and HCPs. Of the AYAs, 41% did receive information from a HCP, 21% of them was satisfied with it. HCPs held physicians and nurse practitioners responsible to discuss sexuality; AYAs preferred nurse practitioners and sexologists. Main barriers to initiate a discussion on sexuality are "feeling of shame" for AYAs and "presence of a third party" for HCPs. Most AYAs would like to receive information about sexuality through a website (66%) or conversation with a HCP (64%) before start of treatment (64%). HCPs would be helped by written material (75%) and additional training (71%) to give to AYAs. Conclusion: AYAs do report unmet needs regarding adequate communication about sexuality-related issues. Discrepancy between patients and HCPs illustrates the importance of patient participation. Future research needs to focus on interventions to improve sexuality-related information provision and implementation of these interventions. [ABSTRACT FROM AUTHOR]

Objective: To examine self-reported medication adherence and its association with illness perceptions, beliefs about medication and personality among thyroid cancer survivors. Methods: Individuals diagnosed with thyroid cancer between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received our survey; 86% (n = 306) responded. Results: Many patients reported that they never forgot taking their medicines (n = 168; 56%), never altered the dose (n = 258; 88%), never stopped taking them (n = 291; 99%), never decided to miss a dose (n = 284; 97%) and never took less than instructed (n = 286; 97%). Fifty-two percent were classified as nonadherent; of which 14% intentional nonadherent only, 70% were nonintentional nonadherent only and 16% were both intentional and nonintentional nonadherent. Nonadherers were younger, more highly educated, more often employed, had a lower stage at diagnosis, and less often reported ≥2 comorbid conditions than adherers. Furthermore, their illness affected them more emotionally and they more often reported that their life would be impossible without their medicine. Logistic regression models showed that higher age, lower education and lower perceived necessity of medication was associated with better adherence while beliefs about medication, illness perceptions, and personality were not associated with adherence. Conclusions: Despite lifelong dependence on supplement therapy, 52% of thyroid cancer survivors were nonadherent. [ABSTRACT FROM AUTHOR]

Purpose: While a wide range of psychosocial oncological (PO) interventions has been developed, a systematic overview of interventions to inform patients, care providers, as well as researchers, policy makers and health insurers, is lacking. The aims of this paper were (1) to describe the attainment of this overview, which may be used in other jurisdictions and for other health conditions and (2) to reflect on what determines developments in this field. Methods: Dutch researchers and care providers were invited to describe PO-interventions they apply in research or clinical practice. Selection criteria for what constituted a PO-intervention were determined. The input was organized in 12 predefined categories (e.g. physical functioning, genetics). Findings: Sixty-six PO-interventions were included in the overview. Two major categories were psychosocial functioning (24%) and physical functioning and recovery (24%). Interventions are mostly directed at adults (65%) and not aimed at a specific type of cancer (61%). Nearly 25% of the interventions lacked scientific underpinning. Conclusions: This paper provides an overview of Dutch PO-interventions and input on what drives their development. The categorizing method can be used in other jurisdictions and for other health care conditions. A next step would be to investigate the effectiveness and evidence of PO-interventions. Implications for Psychosocial Providers and Policy: The open access overview of interventions provides referral information for care providers. By identifying possible gaps and overlap, the overview looks at possible drivers behind developments in this field which will be of interest to policy makers. [ABSTRACT FROM AUTHOR]

Purpose Purpose is to: (1) study effectiveness of the hospital-based work support intervention for cancer patients at two years of follow-up compared to usual care and (2) identify which early factors predict time to return-to-work (RTW). Methods In this multi-center randomised controlled trial (RCT), 106 (self-)employed cancer patients were randomized to an intervention group or control group and provided 2 years of follow-up data. The intervention group received patient education and work-related support at the hospital. Primary outcome was RTW (rate and time) and quality of life (SF-36), and secondary outcomes were, work ability (WAI), and work functioning (WLQ). Univariate Cox regression analyses were performed to study which early factors predict time to full RTW. Results Participants were diagnosed with breast (61%), gynaecological cancer (35%), or other type of cancer (4%). RTW rates were 84% and 90% for intervention versus control group. They were high compared to national register-based studies. No differences between groups were found on any of the outcomes. Receiving chemotherapy (HR = 2.43, 95% CI 1.59–3.73 p < 0.001), low level of education (HR = 1.65, 95% CI 1.076–2.52 p = 0.02) and low work ability (HR = 1.09 [95% CI 1.04–1.17] p = 0.02) were associated with longer time to full RTW. Conclusions We found high RTW rates compared to national register-based studies and we found no differences between groups. Future studies should therefore focus on reaching the group at risk, which consist of patients who receive chemotherapy, have a low level of education and have a low work ability at diagnosis. Trial registration: Netherlands Trial Registry (NTR) (http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1658): NTR1658. [ABSTRACT FROM AUTHOR]

Many new decision aids are developed while aspects of existing decision aids could also be useful, leading to a sub-optimal use of resources. To support treatment decision-making in prostate cancer patients, a pre-existing evidence-based Canadian decision aid was adjusted to Dutch clinical setting. After analyses of the original decision aid and routines in Dutch prostate cancer care, adjustments to the decision aid structure and content were made. Subsequent usability testing (N = 11) resulted in 212 comments. Care providers mainly provided feedback on medical content, and patients commented most on usability and summary layout. All participants reported that the decision aid was comprehensible and well-structured and would recommend decision aid use. After usability testing, final adjustments to the decision aid were made. The presented methods could be useful for cultural adaptation of pre-existing tools into other languages and settings, ensuring optimal usage of previous scientific and practical efforts and allowing for a global, incremental decision aid development process. [ABSTRACT FROM AUTHOR]

Trabectedin and ifosfamide are among the few cytostatic agents active in advanced soft tissue sarcomas (STSs). Trabectedin is most potent against so-called L-sarcomas (leiomyosarcoma and liposarcoma). The survival gain and cost-effectiveness of these agents in a second-line setting were analysed in the setting of advanced STS after failure of anthracyclines. A prospective observational trial had previously been performed to assess the use of trabectedin in a Dutch real-world setting. Data on ifosfamide monotherapy were acquired from previous studies, and an indirect comparison of survival was made. A state-transition economic model was constructed, in which patients could be in mutually exclusive states of being preprogression, postprogression, or deceased. The costs and quality-adjusted life years (QALYs) for both treatments were assessed from a Dutch health-care perspective. Separate analyses for the group of L-sarcomas and non-L-sarcomas were performed. Trabectedin treatment resulted in a median progression-free survival of 5.2 months for L-sarcoma patients, 2.0 months for non-L-sarcoma patients, and a median overall survival of 11.8 and 6.0 months, respectively. For L-sarcoma patients, trabectedin offered an increase of 0.368 life years and 0.251 QALYs compared to ifosfamide and €20,082 in additional costs, for an incremental cost-effectiveness ratio (ICER) of €80,000 per QALY gained. In the non-L-sarcoma patients, trabectedin resulted in 0.413 less life years and 0.266 less QALYs, at the increased cost of €4,698. The difference in survival between drugs and the acquisition costs of trabectedin were the main influences in these models. Trabectedin was shown to have antitumour efficacy in advanced L-sarcoma. From a health economics perspective, the costs per QALY gained compared to ifosfamide monotherapy that may be acceptable, considering what is currently regarded as acceptable in the Netherlands. [ABSTRACT FROM AUTHOR]

Background: While many cancer survivors experience persistent impairments in health-related quality of life (HRQoL) for extended periods of time, others recover soon after treatment. The aim of this research is to assess changes in health-related quality of life in endometrial and ovarian cancer survivors during two years post initial treatment, and to assess clinical and sociodemographic characteristics associated with those changes. Methods: This prospective population-based cohort study includes longitudinal data of endometrial (N = 221) and ovarian (N = 174) cancer survivors diagnosed between 2011 and 2014. The EORTC QLQ-C30 functioning scales were used to assess HRQoL after initial treatment and after 6, 12 and 24 months. Clinical (stage, treatment and comorbidities) and sociodemographic (age, marital status and socio-economic status) characteristics were obtained from the Netherlands Cancer Registry and through self-administered questionnaires. Linear mixed models were used to assess changes in HRQoL over time and characteristics associated with these changes. Results: Among both endometrial and ovarian cancer patients, HRQoL improved within the first 6 months after initial treatment. Changes in HRQoL were mainly associated with clinical characteristics including comorbidities, treatment and tumor stage, and to a lesser extent with sociodemographic characteristics such as socioeconomic status. However, these associations varied per tumor type. Endometrial cancer survivors, who received radiotherapy and had no comorbidities, reported greater improvements in some HRQoL scales over time. Ovarian cancer patients who received chemotherapy and with advanced tumor stages reported poorer functioning during treatment. Most functioning domains (global health, physical and role functioning) recovered to levels of patients without chemotherapy or with early-stage disease after 12 months, but cognitive and social functioning remained impaired. Conclusion: Some subgroups of patients, including those with multiple comorbidities, with an advanced tumor stage and who received chemotherapy, may be in need of additional support as they are less likely to show improvements in HRQoL over time. [ABSTRACT FROM AUTHOR]

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Objective: Cancer and its treatment have an influence on health-related quality of life (HRQOL). Normative data could help to interpret HRQOL among cancer patients. Our aim was to generate longitudinal normative data based on sex, age and morbidity for the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire. Methods: The QLQ-C30 and the Self-administered Comorbidity Questionnaire were administered to a representative panel of the Dutch-speaking population in the Netherlands in 2009 (n = 1743), 2010 (n = 2050), 2011 (n = 2040), 2012 (n = 2194) and 2013 (n = 2333). Results: Regarding sex, at baseline, women scored statistically significant and clinically relevant worse on fatigue, pain and insomnia compared to men. Regarding age groups and sex, HRQoL was lower among the older age groups in men and women. For men, at baseline, significant and clinically relevant age differences were found on physical, role and cognitive functioning, global QOL scale, fatigue, pain and dyspnea. The change over 5 years was larger for older age groups. For women, at baseline, significant and clinically relevant age differences were found on physical functioning, role functioning, nausea/vomiting, pain, dyspnea and insomnia. Those without self-reported morbidities reported a better HRQoL compared to those with morbidities. Among those who completed five assessments, the summary scale scores were stable over time, were higher in men than in women, and higher in younger compared to older age groups. Conclusions: Although HRQoL remains relatively stable over time, HRQoL data needs to be interpreted with care as many confounding factors can have an impact on HRQOL. Our data (which is freely available) can aid in the interpretation of QLQ-C30 scores and can help increase our understanding of the influence of age, sex, time and morbid conditions on HRQoL among cancer patients. [ABSTRACT FROM AUTHOR]

Background: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. Aim: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. Design: Qualitative case studies using interviews. Setting/participants: Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. Results: We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. Conclusion: Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study is to investigate the associations between patient activation and total costs in cancer patients treated with total laryngectomy (TL).Methods: All members of the Dutch Patients' Association for Laryngectomees were asked to participate in this cross-sectional study. TL patients who wanted to participate were asked to complete a survey. Costs were measured using the medical consumption and productivity cost questionnaire and patient activation using the Patient Activation Measure (PAM). Sociodemographic and clinical characteristics were self-reported, and health status measured using the EQ-5D. The difference in total costs from a healthcare and societal perspective among four groups with different PAM levels were compared using (multiple) regression analyses (5000 bootstrap replications).Results: In total, 248 TL patients participated. Patients with a higher (better) PAM (levels 2, 3, and 4) had a probability of 70, 80, and 93% that total costs from a healthcare perspective were lower than in patients with the lowest PAM level (difference €-375 to €-936). From a societal perspective, this was 73, 87, and 82% (difference €-468 to €-719). After adjustment for time since TL, education, and sex, the probability that total costs were lower in patients with a higher PAM level compared to patients with the lowest PAM level changed to 62-91% (healthcare) and 63-92% (societal). After additional adjustment for health status, the probability to be less costly changed to 35-71% (healthcare) and 31-48% (societal).Conclusions: A better patient activation is likely to be associated with lower total costs from a healthcare and societal perspective. [ABSTRACT FROM AUTHOR]

Purpose: To guide early stage breast cancer patients to choose between breast conserving surgery (BCS) and mastectomy (MST) considering the predicted cosmetic result and quality of life (QoL).Methods: A decision model was built to compare QoL after BCS and MST. Treatment could result in BCS with good cosmesis, BCS with poor cosmesis, MST only, and MST with breast reconstruction. QoL for these treatment outcomes were obtained from a previous study and the literature and translated into EuroQoL-5D derived utilities. Chance of good cosmesis after BCS was predicted based on tumor location and tumor/breast volume ratio. The decision model determined whether the expected QoL was superior after BCS or MST based on chance of good cosmesis.Results: The mean utility for the treatments such as BCS with good cosmesis, BCS with poor cosmesis, MST only, and MST with breast reconstruction were 0.908, 0.843, 0.859, and 0.876, respectively. BCS resulted in superior QoL compared to MST in patients with a chance of good cosmesis above 36%. This 36% threshold is reached in case the tumor is located in the upper lateral, lower lateral, upper medial, lower medial, and central quadrant of the breast with a tumor/breast volume ratio below 21.6, 4.1, 15.1, 3.2, and 14.7, respectively.Conclusions: BCS results in superior QoL in patients with tumors in the upper breast quadrants or centrally and a tumor/breast volume ratio below 15. MST results in superior QoL in patients with tumors in the lower breast quadrants and a tumor/breast volume ratio above 4. [ABSTRACT FROM AUTHOR]

Background: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and nurses' experiences with eHealth in this context. Methods: Six online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses' experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A's Behavior Change Model. Results: Within the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients ('Assess' in the 5 A's model), and they provide information about cancer and specifically the advanced type ('Advise'). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting ('Agree'). Neither do they explain how follow-up can be arranged ('Arrange'). In addition, they do not appear to pay much attention to self-management support for informal caregivers. Nurses' attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients. Conclusions: Nurses value self-management support and eHealth for advanced cancer patients and their informal caregivers. However, they seem to disregard important elements in the support of self-management, such as providing practical advice, collaborative goal-setting, and arrangement of follow-up. We recommend further promoting and clarifying the essence and importance of self-management support, including self-management support for informal caregivers. [ABSTRACT FROM AUTHOR]

Purpose:Supportive interventions to enhance return to work (RTW) in cancer survivors hardly showed positive effects so far. Behavioral determinants might have to be considered in the development of interventions to achieve sustained employability. This study aimed to explore cancer survivors’ perspectives and experiences regarding behavioral determinants of RTW and continuation of work. Materials and methods:In this qualitative study, semi-structured telephone interviews were held with 28 cancer survivors. All participants were at working age, 1–2 years after diagnosis and employed at time of diagnosis. Thematic content analysis was performed. Results:Work turned out to be a meaningful aspect of cancer survivors’ life, and most participants reported a positive attitude towards their job. Social support to RTW or to continue working was mainly received from family and friends, but pressure to RTW from the occupational physician was also experienced. Changes in expectations regarding work ability from negative to positive during the treatment process were observed. Those who applied active coping mechanisms felt equipped to deal with difficulties regarding work. Conclusions:Behavioral determinants should be taken into account in the development of future interventions to support cancer survivors’ RTW. However, the causal relationship still has to be determined. Implications for rehabilitationFactors influencing occupational motivation among cancer survivors need to be understood in more detail.Previous studies in non-cancer populations have demonstrated that behavioral determinants, such as a positive attitude towards work, high social support and self-efficacy may increase return to work rates or shorten the time to return to work.Addressing behavioral determinants in future development of work-related interventions for cancer survivors is essential in achieving sustained employability. [ABSTRACT FROM PUBLISHER]

Background Inadequate adherence to prescribed analgesics may be one of the reasons why patients with cancer experience unrelieved pain. Adherence is directly influenced by patients' barriers about pain management. Patient pain education programs ( PEPs) have been developed to reduce patients' barriers and increase patients' adherence to their analgesics. The purpose of this article was to evaluate patients' adherence in patients receiving a pain consult and patient pain education in comparison with patients receiving standard pain treatment (standard care [ SC]), to better explore the difficulties in medication adherence in cancer-related pain and the effects of PEP. Methods In 54 adult outpatients with cancer-related pain, patients' adherence to the prescribed around-the-clock analgesics was measured with a Medication Event Monitoring System, in the following time intervals: weeks 1 and 2, weeks 3 and 4, and weeks 7 and 8 after randomization. Adherence was differentiated into taking adherence, taking the correct dose, and taking analgesics at the right time intervals. Results Taking adherence increased in the intervention group compared to baseline (from 91% to 93%) and decreased in the SC group (from 85% to 78%; P < 0.05). At the end of the study, more patients in the intervention group took their analgesics at the right intervals (78%) than did patients in the SC group (64%, P < 0.05). During the study, patients were more adherent to opioids than to World Health Organization step 1 analgesics. Conclusion The combined intervention can increase adherence. The true problem in pain management is that patients do not take their prescribed analgesics at the right time intervals. With the detailed adherence information from this study, it is possible to further tailor patient education to the individual patient. [ABSTRACT FROM AUTHOR]

Objective: 1) to assess patients' descriptions of concerns, and 2) to inform a conceptual framework in which the impact of the nature of concerns on doctor-patient communication is specified.Methods: Six focus groups were conducted with 39 cancer patients and survivors. In these focus groups participants were asked to describe their concerns during and after their illness.Results: Concerns were described as instrumental concerns (e.g., receiving insufficient information) and emotions (e.g., sadness). Patients frequently explained their concerns as an interplay of instrumental concerns and emotions. Examples of the interplay were "receiving incorrect information" and "frustration", and "difficulties with searching, finding and judging of information" and "fear".Conclusion: Instrumental concerns need to be taken into account in the operationalization of concerns in research. Based on the interplay, the conceptual framework suggests that patients can express instrumental concerns as emotions and emotions as instrumental concerns. Consequently, providers can respond with instrumental and emotional communication when patients express an interplay of concerns.Practice Implications: The results of this study can be used to support providers in recognizing concerns that are expressed by patients in consultations. [ABSTRACT FROM AUTHOR]

Background:The best practice for the organization of follow-up care in oncology is under debate, due to growing numbers of cancer survivors. Understanding survivors’ preferences for follow-up care is elementary for designing patient-centred care. Based on data from prostate cancer and melanoma survivors, this study aims to identify: 1) preferences for follow-up care providers, for instance the medical specialist, the oncology nurse or the general practitioner; 2) characteristics associated with these preferences and 3) the preferred care provider to discuss cancer-related problems. Material and methods:Survivors diagnosed with prostate cancer (N = 535) and melanoma (N = 232) between 2007 and 2013 as registered in The Netherlands Cancer Registry returned a questionnaire (response rate was 71% and 69%, respectively). A latent class cluster model analysis was used to define preferences and a multinomial logistic regression analysis was used to identify survivor-related characteristics associated with these preferences. Results:Of all survivors, 29% reported no preference, 40% reported a preference for the medical specialist, 20% reported a preference for both the medical specialist and the general practitioner and 11% reported a preference for both the medical specialist and the oncology nurse. Survivors who were older, lower/intermediate educated and women were more likely to have a preference for the medical specialist. Lower educated survivors were less likely to have a preference for both the medical specialist and the general practitioner. Overall, survivors prefer to discuss diet, physical fitness and fatigue with the general practitioner, and hereditary and recurrence with the medical specialist. Only a small minority favored to discuss cancer-related problems with the oncology nurse. Conclusion:Survivors reported different preferences for follow-up care providers based on age, education level, gender and satisfaction with the general practitioner, showing a need for tailored follow-up care in oncology. The results indicate an urgency to educate patients about transitions in follow-up care. [ABSTRACT FROM AUTHOR]

Background: The purpose of this study was to identify demographic, clinical, psychosocial, physical and environmental factors that are associated with participation in and adherence to a combined resistance and endurance exercise program among cancer survivors, shortly after completion of primary cancer treatment. Data from the randomized controlled Resistance and Endurance exercise After ChemoTherapy (REACT) study were used for this study. Methods: The participants of the REACT study were randomly allocated to either a high intensity (HI) or low- to-moderate intensity (LMI) exercise program. Patients' participation rate was defined as the cancer survivors' decision to participate in the REACT study. Exercise adherence reflected participants' attendance to the scheduled exercise sessions and their compliance to the prescribed exercises. High session attendance rates were defined as attending at least 80 % of the sessions. High compliance rates were defined as performing at least of 90 % of the prescribed exercise across all sessions. Correlates of exercise adherence were studied separately for HI and LMI exercise. Demographic, clinical, and physical factors were assessed using self-reported questionnaires. Relevant clinical information was extracted from medical records. Multivariable logistic regression analyses were applied to identify correlates that were significantly associated with participation, high session attendance, high compliance with resistance and high compliance with endurance exercises. Results: Participants were more likely to have higher education, be non-smokers, have lower psychological distress, higher outcome expectations, and perceive more exercise barriers than non-participants. In HI exercise, higher self-efficacy was significantly associated with high session attendance and high compliance with endurance exercises, and lower psychological distress was significantly associated with high compliance with resistance exercises. In LMI exercise, being a non-smoker was significantly associated with high compliance with resistance exercises and higher BMI was significantly associated with high compliance with resistance and endurance exercises. Furthermore, breast cancer survivors were less likely to report high compliance with resistance and endurance exercises in LMI exercise compared to survivors of other types of cancer. The discriminative ability of the multivariable models ranged from 0.62 to 0.75. Conclusion: Several demographic, clinical and psychosocial factors were associated with participation in and adherence to exercise among cancer survivors. Psychosocial factors were more strongly associated with adherence in HI than LMI exercise. [ABSTRACT FROM AUTHOR]

Background: Anxiety is a risk for reduced quality of life in advanced cancer patients. However, it is an overlooked symptom without routine use of instruments to assess anxiety. Aim: To gain insight into the use of instruments by nurses to assess anxiety in advanced cancer patients and the rationale behind it. Methods: Data with regard to nurses' use of instruments were collected from medical records of 154 patients in three settings. Additionally, 12 nurses were interviewed. Findings: Four instruments were used to assess anxiety. The frequency of assessed anxiety differed among settings. The application of instruments guided patient care and improved communication. Lack of knowledge was the main reason not to use instruments. Conclusions: Application was influenced by patient and environmental factors, knowledge, attitudes and beliefs of nurses. Multifaceted strategies, leadership and education of nurses in the assessment and analysis of anxiety are needed to improve symptom management in advanced cancer patients. [ABSTRACT FROM AUTHOR]