Search

Background: To investigate associations between psychological problems and the use of healthcare and informal care and total costs among head and neck cancer (HNC) patients. Method: Data were used of the NETherlands QUality of Life and Biomedical Cohort study. Anxiety and depression disorder (diagnostic interview), distress, symptoms of anxiety and depression (HADS), and fear of cancer recurrence (FCR) and cancer worry scale (CWS) were measured at baseline and at 12-month follow-up. Care use and costs (questionnaire) were measured at baseline, 3-, 6-, 12-, and 24-month follow-up. Associations between psychological problems and care use/costs were investigated using logistic and multiple regression analyses. Results: Data of 558 patients were used. Distress, symptoms of anxiety or depression, FCR, and/or anxiety disorder at baseline were significantly associated with higher use of primary care, supportive care, and/or informal care (odds ratios (ORs) between 1.55 and 4.76). Symptoms of anxiety, FCR, and/or depression disorder at 12-month follow-up were significantly associated with use of primary care, supportive care, and/or informal care (ORs between 1.74 and 6.42). Distress, symptoms of anxiety, and FCR at baseline were associated with higher total costs. Discussion: HNC patients with psychological problems make more use of healthcare and informal care and have higher costs. This is not the result of worse clinical outcomes. [ABSTRACT FROM AUTHOR]

Purpose: Breast cancer is associated with high levels of psychological distress. Mindfulness-based stress reduction (MBSR) has proven to be effective in reducing distress in cancer patients. In several studies, patients who are currently undergoing somatic anticancer treatment are excluded from participating in MBSR. Little is known about what would be the most suitable stage of disease to offer MBSR. We examined whether stage of disease facilitated and/or hindered participation in MBSR for breast cancer patients.Method: A mixed method design was used. Self-report questionnaires on psychological distress (HADS) and quality of life (EORTC QLQ-C30) were administered before and after MBSR. Five focus groups and three semi-structured individual interviews were conducted. Qualitative data were analyzed with the constant comparative method in order to develop a grounded theory.Results: Sixty-four females participated in MBSR. In 52 patients who completed the questionnaires, psychological distress improved significantly. Qualitative data showed that participating in MBSR both during and after anticancer treatment has specific advantages and disadvantages. Interestingly, being emotionally ready to take part in MBSR seems equally important as physical ability. Informing patients at an early stage seemed to strengthen autonomy and self-management skills.Conclusions: In contrast to the common practice to tailoring the timing of MBSR to physical impairments or demands of the anticancer treatment, our findings revealed that emotional readiness is equally important to take into account. These findings might support professionals in their choices whether and when to inform and refer patients to MBSR. [ABSTRACT FROM AUTHOR]

Purpose: The current study determined the prevalence of severe fatigue in adolescent and young adult (AYA) cancer patients (aged 18-35 years at diagnosis) consulting a multidisciplinary AYA team in comparison with gender- and age-matched population-based controls. In addition, impact of severe fatigue on quality of life and correlates of fatigue severity were examined.Methods: AYAs with cancer (n = 83) completed questionnaires including the Checklist Individual Strength (CIS-fatigue), Quality of Life (QoL)-Cancer Survivor, Hospital Anxiety and Depression Scale (reflecting psychological distress), and the Cancer Worry Scale (reflecting fear of cancer recurrence or progression).Results: The vast majority of participants had been treated with chemotherapy (87%) and had no active treatment at the time of participation (73.5%). Prevalence of severe fatigue (CIS-fatigue score ≥35) in AYAs with cancer (48%, n = 40/83) was significantly higher in comparison with matched population-based controls (20%, n = 49/249; p < .001). Severely fatigued AYAs with cancer reported lower QoL compared to non-severely fatigued AYAs with cancer (p < .05). Female gender, being unemployed, higher disease stage (III-IV) at diagnosis, receiving active treatment at the time of study participation, being treated with palliative intent, having had radiotherapy, higher fear of recurrence or progression, and higher psychological distress were significantly correlated with fatigue severity (p < .05).Conclusions: Severe fatigue based on a validated cut-off score was highly prevalent in this group of AYAs with cancer. QoL is significantly affected by severe fatigue, stressing the importance of detection and management of this symptom in those patients affected by a life-changing diagnosis of cancer in late adolescence or young adulthood. [ABSTRACT FROM AUTHOR]

Purpose: Although long-term colorectal cancer (CRC) survivors generally report a good quality of life, fear of cancer recurrence (FCR) remains an important issue. This study investigated whether the Cancer Worry Scale (CWS) can detect high FCR, the prevalence, and characteristics of FCR in CRC survivors.Methods: Two hundred and eleven patients who had undergone successful CRC surgery in the period 2003-2010 in the Radboud University Medical Center in the Netherlands were asked to participate. All patients were sent an information letter plus questionnaires for collecting information on demographic and medical variables, FCR, distress, and quality of life.Results: Seventy-six patients (36 %; median age of 67.7 years range 41-88 years) completed the questionnaires a median of 5.1 years after surgery. A cut-off score of 14 or higher on the CWS was optimal to detect high FCR. Twenty-nine patients (38 %) experienced high levels of FCR, characterized by higher levels of distress, post-traumatic stress symptoms, and lower quality of life. These individuals particularly reacted to disease-related triggers, felt helpless, were worried, and experienced limitations in daily functioning. High FCR was not associated with demographic or medical variables.Conclusion: Long after successful CRC surgery, FCR is a serious problem that impairs the quality of life for a substantial proportion of patients. With the CWS, it is possible to detect high FCR and thereby assist survivors in receiving appropriate care. [ABSTRACT FROM AUTHOR]

Objectives: The aims of the study were to (1) describe the prevalence of fear of cancer recurrence (FCR) in partners of prostate cancer (PCa) survivors; (2) to compare the proportions of high FCR in partners with high FCR in PCa survivors; (3) to explore partners' demographic and survivors' clinical characteristics associated with high FCR in partners; and (4) to identify the relationship between high FCR and health-related quality of life (HRQoL) in partners.Methods: Questionnaires were sent to partners of disease-free PCa survivors. Outcomes included FCR severity (Cancer Worry Scale [CWS]) and HRQoL (RAND-36). The t and chi-square tests were used to compare partner FCR with survivor FCR. Regression analyses were performed to determine if demographic and clinical characteristics were significantly associated with partner FCR. The multivariate analysis of variance identified differences in HRQoL between partners with high and low FCR.Results: Questionnaires were completed by 168 partners. Mean levels of FCR were comparable between partners and survivors (P = .144). Thirty-five percent of partners reported high FCR (CWS ≥ 14) compared to 38% of PCa survivors (CWS ≥ 13) (P = .542). Higher survivor FCR and younger partner age were significantly associated with higher partner FCR. Partners with high FCR scored significantly lower on social functioning, emotional role functioning, mental health, general health, and vitality than those with low FCR (all P < .05).Conclusions: Findings from this study illustrate that FCR is a significant concern for partners of PCa survivors. Clinicians should be aware of partner FCR when delivering care to men with PCa. [ABSTRACT FROM AUTHOR]

Background: The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health-related quality of life (HRQOL) among AYA patients with cancer.Methods: Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress).Results: A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self-awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = -.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01).Conclusions: Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late adolescence and young adulthood. Cancer 2017;123:4039-47. © 2017 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes. [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]

Purpose: Research to date on fear of cancer recurrence (FCR) shows that moderate to high FCR affects 22-87 % of cancer survivors and is associated with higher psychological morbidity (Simard et al J Cancer Surviv 7:300-322, 2013). Despite growing research interest in FCR, the lack of consensus on its definition and characteristics when it reaches a clinical level has impeded knowledge transfer into patient services.Methods: In order to address these gaps, expert researchers, policy makers, trainees, and patient advocates attended a 2-day colloquium at the University of Ottawa in August 2015. A Delphi method was used to identify the most relevant definition of FCR, and the attendees generated possible diagnostic characteristics of clinical FCR.Results: After three rounds of discussion and voting, the attendees reached consensus on a new definition of FCR: "Fear, worry, or concern relating to the possibility that cancer will come back or progress." Regarding clinical FCR, five possible characteristics were proposed: (1) high levels of preoccupation, worry, rumination, or intrusive thoughts; (2) maladaptive coping; (3) functional impairments; (4) excessive distress; and (5) difficulties making plans for the future.Conclusions: The new proposed definition of FCR reflects the broad spectrum in which patients experience FCR. A consensual definition of FCR and the identification of the essential characteristics of clinical FCR are necessary to accurately and consistently measure FCR severity and to develop effective interventions to treat FCR. We hope this broad definition can encourage further research and the development of inclusive policies for all cancer patients and survivors who are struggling with this issue. [ABSTRACT FROM AUTHOR]

Objective: Knowledge of factors associated with fear of cancer recurrence (FCR) may inform intervention development and improve patient care. The aims were (1) to compare FCR severity between cancer types and (2) to identify associations between FCR, demographics, medical characteristics, information provision and health-related quality of life.Methods: Cross-sectional data were obtained from the Patient Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. We included stage I and II survivors diagnosed with melanoma (n = 469), colorectal cancer (n = 861), endometrial cancer (n = 688), thyroid cancer (n = 218), Hodgkin (n = 103) and non-Hodgkin lymphoma (n = 276). Cancer survivors completed questionnaires on FCR (Impact of Cancer scale - Health Worries subscale), satisfaction with information provision (European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire (EORTC-QLQ) INFO25, satisfaction scale) and health-related quality of life (EORTC-QLQ C30, Short Form 36-item).Results: A total of 2615 survivors completed the Impact of Cancer scale - Health Worries subscale. No significant differences in FCR severity were found between any of the cancer types (p = 0.063). A younger age, female gender, stage II disease, a shorter time since diagnosis, scheduled follow-up appointments and comorbidity were associated with higher FCR (p < 0.01). Satisfaction with information provision was negatively correlated with FCR severity (r = -0.16, p < 0.05). Demographic and medical factors accounted for 6% of explained variance in FCR. The full model, also including health-related quality of life, explained 15% and 19%, respectively.Conclusion: Fear of cancer recurrence seems to be a universal concern of cancer survivors rather than a cancer type-specific problem. Gender, age and medical factors were identified as risk factors. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: It can be assumed that patients' participation in a phase I study will have an important impact on their partners' life. However, evaluation of partners' experiences while patients are undergoing experimental treatment and of their well-being after the patient's death is lacking. We aimed to explore partners' experience of patients' participation in phase I studies and to investigate their well-being after a patient's death.Method: This was an observational study conducted after the patient's death. Partners of deceased patients who had participated in a phase I study completed a questionnaire designed by us for experience evaluation and the Beck Depression Inventory for Primary Care, the Hospital Anxiety and Depression Scale, the Inventory of Traumatic Grief, and the RAND-36 Health Survey.Results: The median age of the 58 participating partners was 58 years (range: 51-65), and 67% was female. Partners reported negative effects on patients' quality of life, but only 5% of partners regretted patients' participation. Approximately two years after the patients' death, 19% of partners scored for depression, 36% for psychological distress, and 46% for complicated grief, and partners generally scored significantly lower on social and mental functioning compared to normative comparators.Significance Of Results: Although partners reported negative consequences on patients' quality of life, most did not regret patients' participation in the phase I studies. Prevalence of depression, psychological distress, and complicated grief seemed important problems after a patient's death, and these must be considered when shaping further support for partners of patients participating in phase I trials. [ABSTRACT FROM AUTHOR]

Background. Gastrointestinal stromal tumors (GIST) are rare and before 2000, patients had a dismal prognosis with a median survival of less than a year after tumor metastasis. However, the median overall survival has increased to more than five years following the introduction of imatinib and other tyrosine kinase inhibitors (TKI). Little is known about the psychosocial consequences of treatment of GIST, but this is important because patients now are treated and live for longer. This cross-sectional study assessed quality of life, distress, and fear of cancer recurrence or progression in patients with GIST. Material and methods. Eighty-six patients with localized or metastatic GIST were asked to participate. Patients completed self-report questionnaires including the EORTC-Quality of Life Questionnaire, Hospital Anxiety and Depression Scale, Impact of Event Scale, Cancer Worry Scale, and Fear of Cancer Recurrence Inventory. Results. Fifty-four patients (median age 63.3 years) completed the questionnaires, 33 (61%) of whom were receiving TKI treatment at the time of the study. Overall, the GIST patients had a good global quality of life, but 28 patients had high levels of fear of cancer recurrence/progression. This high level of fear was not related to patient- or treatment-related variables. These patients experienced significantly higher levels of psychological distress, functional impairments, and difficulty making plans for the future than did patients with lower levels of fear. Conclusions. More attention should be paid to specific cancer-related problems, such as fear of cancer recurrence/progression, in addition to general quality of life issues in patients with GIST. [ABSTRACT FROM AUTHOR]

Background: Patients with chronic obstructive pulmonary disease (COPD) encounter many (gradual) losses due to their disease, which trigger a grieving process. This process is characterized by stages of denial, resistance, sorrow, and acceptance. Purpose: This study examined whether these stages are conceptually distinct and whether the Acceptance of Disease and Impairments Questionnaire (ADIQ) can validly and reliably measure these stages in three samples of patients with COPD in the Netherlands. Methods: Exploratory factor analysis (EFA) was performed on 145 outpatients with moderate to severe COPD. Confirmatory factor analyses were performed on 303 outpatients with mild to very severe COPD and 127 patients entering an inpatient pulmonary rehabilitation program. Furthermore, internal reliability, construct validity, sensitivity to change, and floor and ceiling effects were examined. Results: EFA yielded a four-factor solution that explained 73.2 % of variance. Confirmatory factor analyses showed a good fit of the four-factor structure in all study samples. Cronbach's alpha reliability coefficients were .79 or higher. Subscales showed to be sensitive to change. Conclusions: Four distinct stages of grief are recognized in COPD. The ADIQ is a valid and reliable instrument to measure these stages: denial, resistance, sorrow, and acceptance. Measuring the stages of grieving is important for disease management: addressing patients with a specific therapeutic approach for the stage they are in could help to motivate patients to engage in self-management and change their lifestyle. [ABSTRACT FROM AUTHOR]

Background: Entering medicine for the first time is highly impressive for students, but we know little about the actual emotional learning processes taking place. Aims: We aimed to get more insight into expectations, experiences and emotions of students during their first clinical experiences in a hospital compared to a nursing home. Methods: We carried out a qualitative and a quantitative survey by administering questionnaires about expectations, impressive experiences and learning activities within two cohorts of first-year medical students before and after a 4-week nursing attachment. Results: Despite different expectations, students reported similar experiences and learning activities for the nursing home and the hospital. Most impressive events were related to patient care, being a trainee, or professional identities being challenged. Students in nursing homes most often referred to their own relationships with patients. Students expressed different emotions, and frequently experienced positive and negative emotions at the same time. Conclusions: Rewarding experiences (not only difficult or stressful events) do matter for medical professional development. Students need to learn how to deal with and feel strengthened by the emotions evoked during clinical experiences, which should be supported by educators. The nursing home and the hospital seem to be equally suited as learning environments. [ABSTRACT FROM AUTHOR]

Several randomized controlled trials have indicated that cognitive behaviour therapy is an effective treatment (or chronic fatigue syndrome. In 1 of these studies 13 therapists applied cognitive behaviour therapy for chronic fatigue syndrome in 83 chronic fatigue syndrome patients. In the present study therapists' adherence and perceptions of the manual are studied. Following completion ot the study the therapists were asked to complete a questionnaire. Audiotaped sessions were conducted to verily the therapists' adherence. Analyses of the audiotapes showed that in 87% of the sessions this appeared to be the case. The questionnaire revealed that the therapists found it more difficult to treat patients with chronic fatigue syndrome than to treat patients with psychological or other physical problems. Treatment aspect posing the most problems were integrating individual problems into the standardized treatment dealing with the patients lack of confidence in the treatment and handling insufficient motivation. [ABSTRACT FROM AUTHOR]

Background: Lung cancer patients and their partners report high rates of distress. Although distress is of importance, psychiatric disorders might be more important in terms of prognostic value and additional psychological treatment. This study examined the suitability of the Hospital Anxiety and Depression Scale (HADS), Distress Thermometer (DT), Beck Depression Inventory (BDI-II) and State subscale of State Trait Anxiety Inventory (STAI-S) to screen for psychiatric disorders in lung cancer patients and partners.Methods: A consecutive sample of lung cancer patients and partners completed the screening instruments. The Structured Clinical Interview DSM-IV (SCID-I) was used to diagnose psychiatric axis I disorders.Results: In 144 patients, overall ability of HADS total score (HADS-T) screening for patients with psychiatric disorders was good, whereas DT appeared less suitable. In 98 partners, the performance of HADS-T was good. Although no instrument was successful in identifying psychiatric disorders, HADS-T came closest with a fair performance in patients and partners.Limitations: Several patients and partners declined participation because they perceived participation as too distressing. As decliners possibly have the highest rates of disorders, our findings might underestimate the prevalence of psychiatric disorders. A low prevalence negatively affects the positive predictive value and complicates efficient screening for psychiatric disorders.Conclusion: The HADS-T appears to be a suitable screening instrument for ruling out those lung cancer patients and partners without a psychiatric disorder. Regarding identifying those with a psychiatric disorder, HADS-T should be used to refer both patients and partners for further diagnostics and treatment to a psychiatrist/psychologist. [ABSTRACT FROM AUTHOR]

Context: The introduction of the tyrosine kinase inhibitor (TKI) imatinib in the treatment of gastrointestinal stromal tumor (GIST) in 2000 was the start of a new era of targeted treatment. Since then, the median survival of patients with GIST has substantially increased. Prolonged survival and chronic TKI use are associated with treatment-induced symptoms, such as fatigue, which can compromise quality of life (QoL).Objectives: This study determined the prevalence of severe fatigue in GIST patients compared to matched healthy controls, the impact of fatigue on daily life, and associations between fatigue and current TKI use.Methods: One hundred nineteen patients treated with surgery and/or a TKI for GIST were asked to participate. Participants completed questionnaires including the Checklist Individual Strength-Fatigue Severity scale (CIS-fatigue), Short-Form 36-Item Health Survey, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, Fatigue Catastrophizing Scale, Self-Efficacy Scale, and the Hospital Anxiety and Depression Scale.Results: Eighty-nine GIST patients (75%) completed questionnaires, 61 patients (69%) were on a TKI. Prevalence of severe fatigue measured with CIS-fatigue was significantly higher in GIST patients (30%) than in 234 matched healthy controls (15%). The prevalence of severe fatigue did not differ significantly between patients receiving treatment with curative (29%) or palliative intent (36%). Severely fatigued patients reported lower QoL and more impairment on all functional domains. TKI use, more psychological distress, and lower physical functioning were associated with fatigue.Conclusion: Severe fatigue occurs in 30% of GIST patients and in 33% of GIST patients on a TKI. The fatigue is disabling and is not only associated with current TKI use but also with psychological distress and physical functioning. GIST patients should be informed about these associated factors of fatigue that deserve appropriate management. [ABSTRACT FROM AUTHOR]