Prevalence and Severity of Pain in Cancer Patients in Germany

Pain is a common symptom in cancer patients, restricts daily life activities and reduces survival time. Identification of sociodemographic, medical and psychological correlates of pain among cancer patients in Germany could help identify subgroups most in need of pain management. In this multicenter, epidemiologic cross-sectional study, we assessed pain prevalence and severity, quality of life (QoL) and psychological distress in a sample of 3,745 cancer patients across all tumor entities. In total, 37.9% patients suffered from cancer-related pain and 56.1% suffered from non-specific pain. Younger, female, less educated and unemployed patients reported pain more frequently and more severe pain (p < 0.001). Pain was associated with distress, depression, anxiety, QoL, tumor stage (p < 0.001), and time since diagnosis (p = 0.012). Pain assessment and pain management should be a routine part of cancer treatment and cancer survivorship care plans

Importance of and Satisfaction with Domains of Health-Related Quality of Life in Cancer Rehabilitation

Instruments for measuring health-related quality of life (HRQoL) generally do not consider the subjective importance of the dimensions they comprise. The aims of this study were to analyze the subjectively perceived importance of the dimension of HRQoL and to investigate their relationship to the satisfaction ratings with these dimensions. A total of 1108 participants enrolled in a cancer rehabilitation program were surveyed. Patients rated eight dimensions of HRQoL (physical functioning, autonomy, emotional stability, cognitive functioning, social relationships, vitality, absence of pain, and sleep quality), as well as global health in terms of how important those dimensions are to them, and how satisfied they are with them. The dimensions with the highest importance ratings were autonomy and social relationships. There were only small sex differences in the importance ratings, but younger patients rated health as being more important than older patients did. The correlations between the importance ratings and the satisfaction ratings of the specific HRQoL dimensions ranged from 0.06 to 0.40, and the correlation between importance and satisfaction for global health was 0.01. Importance ratings provide relevant information for health care professionals in addition to the HRQoL assessments in the context of cancer rehabilitation

Psychosocial Distress in Women With Breast Cancer and Their Partners and Its Impact on Supportive Care Needs in Partners

Objectives: While both patients and informal caregivers report high levels of cancerrelated distress, supportive care needs of relatives are often not taken into account and little is known about mutual perception of distress within couples. Therefore, we aimed to investigate distress in female patients with breast cancer and their male partners as well as supportive care needs in partners. Methods: In this cross-sectional study, we recruited women with breast cancer during primary cancer care and their male partners, obtained information on mental distress and supportive care needs through visual analog scales for four mood domains and the Short Form of Supportive Care Needs Survey (SCNS-SF34). Results: Among 250 eligible patients with breast cancer, 102 patients (40.8%) and their male partners participated. Partners reported higher levels of distress (p = 0.02), whereas patients (self-assessment) indicated stronger needs for help (p < 0.001). Men with higher levels of distress were younger (p < 0.001), and reported a shorter relationship duration (p = 0.001) compared to partners with lower distress. Partners overestimated distress, anxiety, depression, and need for help in the patient. Patients overestimated partners need for help. The majority of partners (78%) reported at least one unmet need, most frequently related to the health system and information domain. Conclusion: A systematic distress and needs assessment for women with breast cancer and their male partners is mandatory. The provision of optimal supportive care depends on protocols that include not only psychosocial care for patients but also procedures for managing distress and needs for partners including individual and couple-based interventions

Norm Values and Psychometric Properties of the 24-Item Demoralization Scale (DS-I) in a Representative Sample of the German General Population

Purpose: The Demoralization scale (DS-I) is a validated and frequently used instrument to assess existential distress in patients with cancer and other severe medical illness. The purpose of this study was to provide normative values derived from a representative German general population sample and to analyze the correlational structure of the DS-I. Methods: A representative sample of the adult German general population completed the DS-I (24 Items), the Emotion Thermometers (ET) measuring distress, anxiety, depression, anger, need for help, and the Functional Assessment of Chronic Illness Therapy Fatigue Scale (FACIT-fatigue). Results: The sample consists of N = 2,407 adults (mean age = 49.8; range = 18–94 years), 55.7% women). The percentages of participants above the DS-I cutoff (30) was 13.5%. The mean scores of the DS-I dimensions were as follows: (1) loss of meaning and purpose: M = 2.78 SD = 4.49; (2) disheartenment: M = 3.19 SD = 4.03; (3) dysphoria M = 4.51 SD = 3.20; (4) sense of failure: M = 6.24 SD = 3.40; and for the DS-I total score: M = 16.72 SD = 12.74. Women reported significantly higher levels of demoralization than men, with effect sizes between d = 0.09 (Loss of Meaning) and d = 0.21 (Dysphoria). Age was not associated with demoralization in our sample. DS-I reliability was excellent (a = 0.94) and DS-I subscales were interrelated (r between 0.31 and 0.87) and significantly correlated with ET, especially depression, anxiety, and need for help and fatigue (r between 0.14 and 0.69). Conclusions: In order to use the DS-I as a screening tool in clinical practice and research the normative values are essential for comparing the symptom burden of groups of patients within the health care system to the general population. Age and sex differences between groups of patients can be accounted for using the presented normative scores of the DS-I

Psychological Distress in Intracranial Neoplasia: A Comparison of Patients With Benign and Malignant Brain Tumours

Objective: We aimed to assess psychological distress in patients with intracranial neoplasia, a group of patients who suffer from severe functional, neurocognitive and neuropsychological side effects, resulting in high emotional distress. Methods: We conducted a cross-sectional study, including inpatients with brain tumours. Eligible patients completed validated self-report questionnaires measuring depression, anxiety, distress, symptoms of posttraumatic stress disorder (PTSD), fear of progression and health-related quality of life. The questionnaire set was completed after brain surgery and receiving diagnosis and before discharge from hospital. Results: A total of n = 31 patients participated in this survey. Fourteen of them suffered from malignant (n = 3 metastatic neoplasia) and 17 from benign brain tumours. Mean values of the total sample regarding depression (M = 9.28, SD = 6.08) and anxiety (M = 6.00, SD = 4.98) remained below the cut-off ≥ 10. Mean psychosocial distress (M = 16.30, SD = 11.23, cut-off ≥ 14) and posttraumatic stress (M = 35.10, SD = 13.29, cut-off ≥ 32) exceeded the clinically relevant cut-off value in all the patients with intracranial tumours. Significantly, more patients with malignant (79%) than benign (29%) brain tumours reported PTSD symptoms (p = 0.006). Conclusion: Distress and clinically relevant PTSD symptoms in patients with intracranial neoplasia should be routinely screened and treated in psycho-oncological interventions immediately after diagnosis. Especially, neuro-oncological patients with malignant brain tumours or metastases need targeted support to reduce their emotional burden

Perceived Positive and Negative Life Changes in Testicular Cancer Survivors

Background and objectives: Despite a generally good prognosis, testicular cancer can be a life-altering event. We explored perceived positive and negative life changes after testicular cancer in terms of frequency, demographic and disease-related predictors, and associations with depression and anxiety. Materials and methods: All testicular cancer survivors receiving follow-up care at two specialized outpatient treatment facilities were approached at follow-up visits or via mail. We assessed a total of N = 164 patients (66% participation rate, mean time since diagnosis: 11.6 years, SD = 7.4) by the Posttraumatic Growth Inventory (PTGI, modified version assessing positive and negative changes for each of 21 items), Patient-Health-Questionnaire-9 (PHQ-9), and Generalized-Anxiety- Disorder-Scale-7 (GAD-7). We conducted controlled multivariate regression analyses. Results: Most survivors (87%) reported at least one positive change (mean number: 7.2, SD = 5.0, possible range: 0–21). The most frequent perceived positive changes were greater appreciation of life (62%), changed priorities in life (62%), and ability rely on others (51%). At least one negative change was perceived by 33% (mean number of changes: 1.1, SD = 2.5). Negative changes were most frequent for decreases in self-reliance (14%), personal strength (11%), and ability to express emotions (9%). A higher socioeconomic status was associated with more positive changes ( = 0.25, 95% CI 0.08 to 0.42); no other association with demographic and disease-related predictors emerged. While positive life changes were not associated with depression ( = 0.05, 95% CI 0.17 to 0.07) and anxiety ( = 0.00, 95% CI 0.13 to 0.13), more negative life changes were significantly associated with higher depression ( = 0.15, 95% CI 0.03 to 0.27) and anxiety ( = 0.23, 95% CI 0.11 to 0.36). There was no significant interaction of positive and negative changes on depression or anxiety. Conclusions: Although positive life changes after testicular cancer are common, a significant number of survivors perceive negative changes in life domains that have been primarily investigated in terms of personal growth. Early identification of and psychosocial support for patients who perceive predominantly negative changes may contribute to prevention of prolonged symptoms of anxiety and depression

Frequency of Sexual Problems and Related Psychosocial Characteristics in Cancer Patients—Findings From an Epidemiological Multicenter Study in Germany

Background: Multimodal cancer treatments are often associated with sexual problems. Identifying patients with sexual problems could help further elucidate serious issues with their sexuality and thus promote or maintain patients’ sexual health. We aimed to assess the occurrence of sexual problems in patients across different tumor locations and to explore associated sociodemographic, medical and psychosocial factors. Methods: We included 3,677 cancer patients (mean age 58 years, age range 18– 75 years, 51.4% women) from a large epidemiological multicenter study in Germany on average 13.5 months after cancer diagnosis. The occurrence and frequency of sexual problems were assessed via a binary item on the problem checklist of the Distress Thermometer (DT). Controlled associations of these problems with sociodemographic, medical and psychosocial factors including distress (DT), anxiety (GAD-7), depression (PHQ-9), quality of life (EORTC-QLQ-C30), and social support (SSUK-8) are analyzed using logistic regression analysis. Results: We found that 31.8% of patients reported sexual problems, with a significant higher proportion in men (40.5%) compared to women (23.7%), OR 2.35, 95% CI [1.80– 3.07] and a higher proportion in patients with a partner (35.6%) compared to those without a partner (3.5%), OR 2.83, 95% CI [2.17–3.70]. Tumor location was associated with occurrence of sexual problems: patients with cancer, affecting the male genital organs had the highest chance for sexual problems, OR 2.65, 95% CI [1.18–3.95]. There was no significant difference in the occurrence of sexual problems between age groups OR 0.99, 95% CI [2.13–3.53] and type of therapy (e.g., operation OR 0.91, 95% CI [0.72–1.15]). Sexual problems were further associated with elevated levels of anxiety, OR 1.05, 95% CI [1.02–1.10], less social support, OR 0.93, 95% CI [0.90–0.97] and lower quality of life in terms of impaired functioning (e.g., social function, OR 0.99, 95% CI [0.99–1.00]). Conclusions: Sexual problems are commonly reported by patients. Male patients and those living with a partner are more likely to report sexual problems. Sexual problems are associated with different aspects of well-being. The findings imply the practical relevance to screen for sexual problems among patients and identified groups that should be particularly monitored

Cancer-Related Distress: How Often Does It Co-occur With a Mental Disorder? – Results of a Secondary Analysis

Objectives: The Distress Thermometer (DT) is a validated and widely used screening tool to identify clinically relevant distress in cancer patients. It is unclear, to which extend subjectively perceived distress measured by the DT is related to objective burden (mental disorder). We therefore examine the co-occurrence of a mental disorder for different DT thresholds and explore the diagnostic properties of the DT in detecting a mental disorder. Methods: In this multicenter cross-sectional study, we included 4,020 patients with mixed cancer diagnoses. After selection of relevant cases, weighting procedure and imputation of missing data we evaluated the data of N = 3,212 patients. We used the DT to assess perceived distress and the standardized Composite International Diagnostic Interview for Oncology (CIDI-O) to assess the 4-week prevalence of mental disorders. The association between distress and any mental disorder (MD) is calculated using Pearson correlations. Relative risks for MD in patients with/without distress and the co-occurrence of distress and MD were calculated with Poisson regression. To assess the operating characteristics between distress and MD, we present the area under the curve (AUC). Results: 22.9% of the participants had a cut-off DT level of 5 and were affected by MD. Each level of distress co-occurs with MD. The proportion of patients diagnosed with MD was not greater than the proportion of patients without MD until distress levels of DT = 6 were reached. The correlation between DT and MD was r = 0.27. The ROCanalysis shows the area under curve (AUC) = 0.67, which is classified as unsatisfactory. With increasing distress severity, patients are not more likely to have a mental disorder. Conclusion: Our results suggests viewing and treating cancer-related distress as a relatively distinct psychological entity. Cancer-related distress may be associated with an increased risk for a mental disorder and vice versa, but the overlap of both concepts is very moderate

Psychosocial Long-Term Effects of Young Adult Cancer Survivors: Study Protocol of the Longitudinal AYA-LE Long-Term Effects Study

Background: About 3% of new cancer cases affect young adults aged between 15 and 39 years. The young age, the increasing incidence and the relatively good prognosis of this population lead to the growing importance to investigate the psychosocial long-term and late effects. The aims of the AYA-LE long-term effects study are: first, to assess the temporal course and related factors of life satisfaction and psychological distress of adolescent and young adult (AYA) cancer survivors; and second, to examine a specific topic in each of the yearly surveys in a more differentiated way. Methods: This study represents a continuation of the longitudinal AYA-LE study. The existing sample of AYA cancer patients (t1: N = 577; t2: N = 514; aged between 18 and 39 years at diagnosis; all major tumor entities) was extended by four further survey points (t3: 2018, t4: 2019, t5: 2020, t6: 2021). In addition, a comparison sample of young adults without cancer was collected. We measured longitudinal data for outcomes such as quality of life, psychological distress, and fatigue with standardized questionnaires. Furthermore, each survey point included a different cross-sectional topic (e.g., health behavior, occupational situation, and compliance). Discussion: The AYA-LE long-termeffects study will show the long-termconsequences of cancer in young adulthood. We expect at least complete data of 320 participants to be available after the sixth survey, which will be completed in 2021. This will provide a comprehensive and differentiated understanding of the life situation of young adults with cancer in Germany. The findings of our study enable a continuous improvement of the psychosocial care and specific survivorship programs for young cancer patients

Potreba za psihosocijalnom rehabilitacijom oboljelih od raka

In addition to the healing and alleviation of primary somatic cancer symptoms, the comprehensive psycho oncological treatment of cancer patients is an important and fundamental component of oncological rehabilitation in Germany. Rehabilitation treatment encompasses medical, physiotherapeutic, psychological, and creative therapeutic methods, as well as psycho-educational interventions within the framework of an individualized therapy plan. Psycho-oncological interventions within rehabilitation are governed less by individual therapeutic schools of thought, and more by a supportive, patient-centered approach that integrates various psychotherapeutic methods. Adapted methods and techniques from various psychotherapeutic approaches (behavioral therapy, psychoanalytical psychotherapies, systemic family therapy, or hypnotherapy) are currently used in the treatment of cancer patients. A total of N=116 patients of the Paracelsus Clinic am See in Bad Gandersheim were able to be included in the study. In summary, this study shows that about two thirds of the patients admitted to the oncological rehabilitation clinic exhibit middle to high degrees of distress in the areas of anxiety and/or depression. Moreover, it appears to be particularly important to assess not only the mental distress of cancer patients but also their degree of information with regard to psycho-oncological treatment when performing screening for psycho-oncological treatment outside of the rehabilitation clinic setting. Here it is particularly important to accommodate for a differing need for differing forms of treatment (need for counseling, care, or treatment).Sveobuhvatno psiho-onkološko liječenje bolesnika s rakom važan je prilog u liječenju i ublažavanju primarnih somatskih simptoma te temeljna komponenta onkološke rehabilitacije u Saveznoj Republici Njemačkoj. Ova vrsta rehabilitacije obuhvaća medicinske, fizioterapijske, psihološke te kreativno terapijske pristupe, ali i psihoedukacijske intervencije u okviru individualiziranih terapijskih programa. Psiho-onkološki rehabilitacijski postupci manje su određeni kognitivnim psihoterapijskim metodma, a više potpornim, pacijentu usmjerenim pristupima koji obuhvaćaju različite psihoterapijske tehnike. Prilagođene metode i tehnike iz različitih psihoterapijskih pristupa (bihevioralna terapija, psihoanalitička psihoterapija, sistemska obiteljska terapija ili hipnoterapija) predstavljaju suvremeni koncept u liječenju onkoloških bolesnika. Ova studija provedena je na uzorku od 116 pacijenata Paracelsus Clinic am See u Bad Gandersheimu. Rezultati studije pokazali su da dvije trećine pacijenata uključenih u onkološku rehabilitaciju pokazuje srednji do visok stupanj poremećaja u području anksioznosti i/ili depresije. Osim toga, osobito je važno da se u uvjetima definiranja psiho-onkološkog liječenja u izvankliničkim uvjetima ne procjenjuje samo vrsta i stupanj psihičkog poremećaja, već također i razina informiranosti o psiho-onkološkom liječenju. U tom smislu posebno je važno različite oblike liječenja prilagoditi različitim osobnim potrebamabolesnika (npr. potreba za savjetovanjem, njegom, liječenjem)