What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care.

BACKGROUND: Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC). AIMS: To explore the presence and common themes of last wishes over time and according to the SPC settings (inpatient vs. home-based SPC), and to identify factors associated to having a last wish. METHODS: Patients enrolled in a longitudinal study completed questionnaires at the onset (baseline, t0) and within the first 6 weeks (follow-up, t1) of SPC including an open-ended question on their personal last wishes. Last wishes were content analyzed, and all  wishes were coded for presence or absence of each of the identified themes. Changes of last wishes (t0-t1) were analyzed by a McNemar test. The chi-square-test was used to compare the two SPC settings. Predictors for the presence of a last wish were identified by logistic regression analysis. RESULTS: Three hundred sixty-one patients (mean age, 69.5 years; 49% female) answered at t0, and 130 at t1. In cross-sectional analyses, the presence of last wishes was higher at t0 (67%) than at t1 (59%). Comparisons revealed a higher presence of last wishes among inpatients than those in home-based SPC at t0 (78% vs. 62%; p = .002), but not at t1. Inpatient SPC (OR = 1.987, p = .011) and greater physical symptom burden over the past week (OR = 1.168, p < .001) predicted presence of a last wish at t0. Common themes of last wishes were Travel, Activities, Regaining health, Quality of life, Being with family and friends, Dying comfortably, Turn back time, and Taking care of final matters. The most frequent theme was Travel, at both t0 (31%) and t1 (39%). Themes did not differ between SPC settings, neither at t0 nor at t1. Longitudinal analyses (t0-t1) showed no significant intra-personal changes in the presence or any themes of last wishes over time. CONCLUSIONS: In this late phase of their illness, many patients voiced last wishes. Our study suggests working with such wishes as a framework for person-centered care. Comparisons of SPC settings indicate that individualized approaches to patients' last wishes, rather than setting-specific approaches, may be important.

Need for additional professional psychosocial and spiritual support in patients with advanced diseases in the course of specialist palliative care - a longitudinal observational study.

BACKGROUND: We investigated the need for additional professional support and associated factors in patients (pts) at initiation and in the course of in- and outpatient specialist palliative care (I-SPC/O-SPC). METHODS: Pts entering an urban SPC network consecutively completed questionnaires on psychosocial/spiritual problems and support needs within 72 h (T0) as well as within the first 6 weeks (T1) of SPC. Hierarchical linear regression analysis was used to investigate the impact of sociodemographic / disease-related variables, psychological / physical burden, social support, and SPC setting on the extent of support needs. RESULTS: Four hundred twenty-five pts (70 years, 48% female, 91% cancer, 67% O-SPC) answered at T0, and 167 at T1. At T0, main problems related to transportation, usual activities, and dependency (83-89%). At T1, most prevalent problems also related to transportation and usual activities and additionally to light housework (82-86%). At T0, support needs were highest for transportation, light housework, and usual activities (35-41%). Cross-sectional comparisons of SPC settings revealed higher problem scores in O-SPC compared to I-SPC at T0 (p = .039), but not at T1. Support need scores were higher in O-SPC at T0 (p < .001), but lower at T1 (p = .039). Longitudinal analyses showed a decrease of support need scores over time, independent from the SPC setting. At T0, higher distress (p = .047), anxiety/depression (p < .001), physical symptom burden (p < .001) and I-SPC (p < .001) were associated with higher support need scores (at T1: only higher distress, p = .037). CONCLUSION: Need for additional professional psychosocial/spiritual support was identified in up to 40% of pts. with higher need at the beginning of O-SPC than of I-SPC. During SPC, this need decreased in both settings, but got lower in O-SPC than in I-SPC over time. Support need scores were not only associated with psychological, but also physical burden.

Testing the Treatment Integrity of the Managing Cancer and Living Meaningfully Psychotherapeutic Intervention for Patients With Advanced Cancer.

INTRODUCTION: The Managing Cancer and Living Meaningfully (CALM) therapy for patients with advanced cancer was tested against a supportive psycho-oncological counseling intervention (SPI) in a randomized controlled trial (RCT). We investigated whether CALM was delivered as intended (therapists' adherence); whether CALM therapists with less experience in psycho-oncological care show higher adherence scores; and whether potential overlapping treatment elements between CALM and SPI can be identified (treatment differentiation). METHODS: Two trained and blinded raters assessed on 19 items four subscales of the Treatment Integrity Scale covering treatment domains of CALM (SC: Symptom Management and Communication with Health Care Providers; CSR: Changes in Self and Relationship with Others; SMP: Spiritual Well-being and Sense of Meaning and Purpose; FHM: Preparing for the Future, Sustaining Hope and Facing Mortality). A random sample of 150 audio recordings (75 CALM, 75 SPI) were rated on a three-point Likert scale with 1 = "adherent to some extent," 2 = "adherent to a sufficient extent," 3 = "very adherent." RESULTS: All 19 treatment elements were applied, but in various frequencies. CALM therapists most frequently explored symptoms and/or relationship to health care providers (SC_1: n_applied = 62; 83%) and allowed expression of sadness and anxiety about the progression of disease (FHM_2: n_applied = 62; 83%). The exploration of CALM treatment element SC_1 was most frequently implemented in a satisfactory or excellent manner (n_sufficient or very adherent = 34; 45%), whereas the treatment element SMP_4: Therapist promotes acknowledgment that some life goals may no longer be achievable (n_sufficient or very adherent = 0; 0%) was not implemented in a satisfactory manner. In terms of treatment differentiation, no treatment elements could be identified which were applied significantly more often by CALM therapists than by SPI therapists. CONCLUSION: Results verify the application of CALM treatment domains. However, CALM therapists' adherence scores indicated manual deviations. Furthermore, raters were not able to significantly distinguish CALM from SPI, implying that overlapping treatment elements were delivered to patients.

Efficacy of the Managing Cancer and Living Meaningfully (CALM) individual psychotherapy for patients with advanced cancer: A single-blind randomized controlled trial.

OBJECTIVE: We aimed to determine whether the Managing Cancer and Living Meaningfully (CALM) therapy is superior to a non-manualized supportive psycho-oncological counselling intervention (SPI). METHODS: Adult patients with advanced cancer and ≥9 points on the PHQ-9 and/or ≥5 points on the DT were randomized to CALM or SPI. We hypothesized that CALM patients would report significantly less depression (primary outcome) on the BDI-II and the PHQ-9 6 months after baseline compared to SPI patients. RESULTS: From 329 eligible patients, 206 participated (61.2% female; age: M = 57.9 [SD = 11.7]; 84.5% UICC IV stage). Of them, 99 were assigned to CALM and 107 to SPI. Intention-to-treat analyses revealed significantly less depressive symptoms at 6 months than at baseline (P < .001 for BDI-II and PHQ-9), but participants in the CALM and SPI group did not differ in depression severity (BDI-II: P = .62, PHQ-9: P = .998). Group differences on secondary outcomes were statistically not significant either. CONCLUSIONS: CALM therapy was associated with reduction in depressive symptoms over time but this improvement was not statistically significant different than that obtained within SPI group.

Spiritual well-being mediates the association between attachment insecurity and psychological distress in advanced cancer patients.

PURPOSE: The diagnosis of a terminal disease bears existential challenges, which activate the attachment system. Attachment insecurity, as well as existential resources, such as spiritual well-being, influences patients' extent of psychological distress. Knowledge about the interrelation of these constructs is limited. Based on current research, we assume spiritual well-being to mediate the association of attachment insecurity and psychological distress. METHODS: We obtained data from the baseline measurement of a randomized controlled trial in advanced cancer patients. Patients were sampled from the University Medical Centers of Hamburg and Leipzig, Germany. Main outcome measures included the Patient Health Questionnaire (PHQ-9), the Death and Dying Distress Scale (DADDS), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), and the Experience in Close Relationships Scale (ECR-M16) for assessing attachment insecurity. We tested the mediation hypothesis with two regression analyses using bootstrapping procedure. RESULTS: A total of 190 patients were included. Spiritual well-being mediated the association of attachment insecurity and depression (R2 = 11%), as well as death anxiety (R2 = 15%), in fearful-avoidant attached patients. Neither dismissingly nor preoccupied attached patients differ in terms of spiritual well-being and psychological distress in comparison with secure attached patients. CONCLUSION: Spiritual well-being plays a relevant role in advanced cancer patient's mental health through mediating the association of attachment and psychological distress. Developing a better understanding of the interdependency of the constructs of spiritual well-being and attachment can help to develop individually tailored advanced cancer care programs and psychotherapeutic interventions. TRIAL REGISTRATION: NCT02051660.

[Assessment of Couples' Communication in Patients with Advanced Cancer: Validation of a German Version of the Couple Communication Scale (CCS)]. / Die Erfassung der Paarkommunikation bei Patienten mit einer fortgeschrittenen Krebserkrankung: Validierung einer deutschen Version der Couple Communication Scale (CCS).

BACKGROUND: There are only a few valid instruments measuring couples' communication in patients with cancer for German speaking countries. The Couple Communication Scale (CCS) represents an established instrument to assess couples' communication. However, there is no evidence regarding the psychometric properties of the German version of the CCS until now and the assumed one factor structure of the CCS was not verified for patients with advanced cancer yet. METHOD: The CCS was validated as a part of the study "Managing cancer and living meaningfully" (CALM) on N=136 patients with advanced cancer (≥18 years, UICC-state III/IV). The psychometric properties of the scale were calculated (factor reliability, item reliability, average variance extracted [DEV]) and a confirmatory factor analysis was conducted (Maximum Likelihood Estimation). The concurrent validity was tested against symptoms of anxiety (GAD-7), depression (BDI-II) and attachment insecurity (ECR-M16). RESULTS: In the confirmatory factor analysis, the one factor structure showed a low, but acceptable model fit and explained on average 49% of every item's variance (DEV). The CCS has an excellent internal consistency (Cronbachs α=0,91) and was negatively associated with attachment insecurity (ECR-M16: anxiety: r=- 0,55, p<0,01; avoidance: r=- 0,42, p<0,01) as well as with anxiety (GAD-7: r=- 0,20, p<0,05) and depression (BDI-II: r=- 0,27, p<0,01). CONCLUSION: The CCS is a reliable and valid instrument measuring couples' communication in patients with advanced cancer.

Perceived doctor-patient relationship and its association with demoralization in patients with advanced cancer.

BACKGROUND: Advanced diseases pose a great burden on patients and go hand in hand with existential concerns. Demoralization is considered as a syndrome of existential distress with a perceived inability to cope with loss of meaning in life and feelings of helplessness and hopelessness. Professional health care providers play an important role in providing support for patients and unfavorable conversational styles in their relationship can increase patient's distress. In this study, we examine the association between the patient's perceived relationship to health care providers and demoralization. METHODS: We used baseline data of a randomized control trial intervention study for advanced cancer patients (UICC-Stage ≥ III; PHQ ≥ 9 and/or Distress-Thermometer ≥5). We used a subscale of the QUAL-EC-P for assessing doctor-patient relationship, Beck Depression Inventory-II for depressive symptoms, a modified version of the MSAS as physiological symptom checklist, and the Demoralization Scale to assess demoralization. A hierarchical regression analysis was calculated. RESULTS: In our sample of 187 patients with stage III or IV cancer (62% women), demoralization was present in 53.4% (16% moderate demoralization; 37.4% high demoralization) of the patients. Relationship to health care provider was an independent predictor (ß = -.33, t(186) = -6.70, P < .001) of demoralization. CONCLUSIONS: Our findings underline the importance of the physician-patient relationship in the context of coping with existential challenges in advanced cancer patients. Trainings on how to communicate and build a sustainable relationship with patients and their specific needs may increase the buffering effect of social support by the physicians on patient's existential distress.

Parental cancer: Characteristics of users of child-centred counselling versus individual psycho-oncological treatment.

OBJECTIVE: The aims of this study were to investigate the characteristics of users of a specific child-centred counselling service (COSIP) and to compare those to parents using an individual psycho-oncological treatment (PO). METHODS: We conducted a retrospective analysis on data of users of COSIP and users of PO. Database was the routine assessment (demographic and disease-related characteristics, GAD-7, PHQ-9, EORTC QLQ-C30, and current concerns) of an outpatient psycho-oncological clinic with additional child-centred counselling. A total of 151 patients and 49 partners with children ≤21 years were included. We conducted descriptive analyses and group comparisons. RESULTS: Fifty-nine patients and partners used COSIP only or additionally to individual psycho-oncological service. PO users were more depressed and were more anxious than COSIP users. Patients using PO reported worse emotional functioning than patients using COSIP. Partners using PO reported worse global quality of life and more symptoms of fatigue than partners using COSIP. With regard to current concerns, patients using COSIP reported child-related issues more frequently than PO users. PO users reported symptoms of anxiety, depressive symptoms, or exhaustion more frequently than COSIP users. CONCLUSIONS: The findings demonstrate that patients and partners self-referring to PO or COSIP are highly burdened. COSIP users experience different psychosocial burden than PO users. As poor mental state of parents is a risk factor for the development of mental problems in children, parents using only PO may benefit from additional child-centred support. Accordingly, the need for COSIP should be assessed continuously during PO of patients with children ≤21 years.

Insecure attachment predicts depression and death anxiety in advanced cancer patients.

ABSTRACTObjective:The prevalence of depression as well as adjustment and anxiety disorders is high in advanced cancer patients, and research exploring intraindividual factors leading to high psychological distress is underrepresented. Cancer patients' feelings about security and trust in their healthcare providers have a significant influence on how they deal with their disease. The perception of social support is affected by patients' attachment styles and influences their reactions to feelings of dependency and loss of control. We therefore aimed to explore attachment and its association with psychological distress in patients with advanced cancer. METHOD: We obtained data from the baseline measurements of a randomized controlled trial in advanced cancer patients. Patients were sampled from the university medical centers of Hamburg and Leipzig, Germany. The main outcome measures included the Patient Health Questionnaire, the Death and Dying Distress Scale, the Memorial Symptom Assessment Scale, and the Experience in Close Relationships Scale for assessing attachment insecurity. RESULTS: A total of 162 patients were included. We found that 64% of patients were insecurely attached (fearful-avoidant 31%, dismissing 17%, and preoccupied 16%). A dismissing attachment style was associated with more physical symptoms but did not predict psychological distress. A fearful-avoidant attachment style significantly predicted higher death anxiety and depression, whereas preoccupied attachment predicted higher death anxiety only. Overall, insecure attachment contributed to the prediction of depression (10%) and death anxiety (14%). SIGNIFICANCE OF RESULTS: The concept of attachment plays a relevant role in advanced cancer patients' mental health. Healthcare providers can benefit from knowledge of advanced cancer patients' attachment styles and how they relate to specific mental distress. Developing a better understanding of patients' reactions to feelings of dependency and distressing emotions can help us to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.

Measuring the Psychosocial Dimensions of Quality of Life in Patients With Advanced Cancer: Psychometrics of the German Quality of Life at the End of Life-Cancer-Psychosocial Questionnaire.

CONTEXT: Quality of life (QoL) is a central focus of care in advanced cancer. Specialized instruments, such as the Quality of Life at the End of Life-Cancer (QUAL-EC), may be useful to assess psychosocial issues associated with QoL unique to this population. OBJECTIVES: To evaluate the measurement of the psychosocial dimensions of QoL using the German translation of the QUAL-EC-Psychosocial (QUAL-EC-P) questionnaire, including factor structure and psychometrics. METHODS: About 183 patients with advanced cancer from the University Medical Center Hamburg-Eppendorf and University Medical Center Leipzig completed the QUAL-EC-P questionnaire. We conducted exploratory factor analysis as well as item and reliability analysis. We examined convergent validity with correlations between the scale and relevant psychological constructs. RESULTS: The sample was 60% female with mean age of 57.7 (SD = 11.7). We extracted three factors accounting for 44% of the variance aligning with the structure of the instrument. The QUAL-EC-P questionnaire showed good to acceptable internal consistency for the QoL-psychosocial total score (α = 0.77), the Life completion subscale (α = 0.77), and the Relationship with health care provider subscale (α = 0.81). The Preparation for end of life subscale had adequate albeit low internal consistency (α = 0.64) because concerns about family were less associated with financial worry and fear of death than expected. The psychosocial dimensions of QoL correlated negatively with depression (r = -0.27, P ≤ 0.001), anxiety (r = -0.32, P ≤ 0.001), demoralization (r = -0.63, P ≤ 0.001), and attachment insecurity (r = -0.51, P ≤ 0.001) and positively with spiritual well-being (r = 0.63, P ≤ 0.001). CONCLUSION: The QUAL-EC-P questionnaire may be used to assess the psychosocial aspects of QoL and promote their clinical discussion in patients with advanced cancer.

Psychosocial Impact of Personalized Therapies in Oncology.

Personalized medicine is a keyword in modern oncology summarizing biomarker-driven targeted therapies. Those novel agents enhance our therapeutic portfolio and offer new options for our patients. But the term is often misleading and implicates a tailored therapy to the individual person, but it rather means a treatment stratified on genetic characteristics of the tumor. Molecular therapies raise expectations of curability or long-term treatments making former life-threatening diseases to more chronic ones but this is true only for some patients. So we have to carefully communicate with our patients about the options and limitations of those modern therapies not to trigger disappointments.

Stability and Priority of Symptoms and Symptom Clusters Among Allogeneic HSCT Patients Within a 5-Year Longitudinal Study.

CONTEXT: Due to toxicity and invasiveness, allogeneic hematopoietic stem cell transplantation causes severe and longstanding symptom burden. Longitudinal studies on symptoms and symptom clusters (SC) would be helpful to optimize symptom control but are rare to date. OBJECTIVES: The objective of this study was to investigate stability of symptoms, extract time stable SC, and determine their priority in symptom management. METHODS: In this multicenter study, patients diagnosed with hematologic cancer were assessed before conditioning (T0) and three months (T1), one year (T2), and five years (T3) after transplantation. Symptoms were assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30). Symptoms were stable when rated as present at three consecutive time points. Applying factor analysis, stable SC were composed of symptoms loading on the same factor across all time points. Priority in symptom management was derived from a combination of severity and predictive power for quality of life (QoL). RESULTS: Two hundred thirty-nine patients participated at T0, 150 (63%) at T1, 102 (43%) at T2, and 45 (19%) at T3. We identified three stable SC, composed of rest-tired-weak-dyspnea-loss of appetite (exhausted), tense-worried-irritable-depressed (affective), and nausea-vomiting (gastrointestinal). Fatigue was most persistent and also most severe and predictive for QoL, both as symptom and in cluster (exhausted). CONCLUSION: Given its high stability, severity, and impact on QoL, fatigue should have priority in symptom management. The treatment of this symptom could be enhanced by also incorporating interventions addressing dyspnea and loss of appetite.

Attachment Insecurity in Advanced Cancer Patients: Psychometric Properties of the German Version of the Brief Experiences in Close Relationships Scale (ECR-M16-G).

CONTEXT: Attachment insecurity refers to difficulty in trusting and relying on others in times of need. Its underlying factors attachment anxiety and attachment avoidance have been empirically associated with impaired coping in advanced cancer and, therefore, should be considered in individually tailored medical and psychosocial treatment. OBJECTIVES: The objective of this study was to evaluate the psychometric properties of the German translation of the Brief Experiences in Close Relationships Scale (ECR-M16-G). METHODS: We recruited 182 advanced cancer patients from outpatient psycho-oncology clinics of the University Medical Center Hamburg-Eppendorf and the University Medical Center Leipzig, local and external cancer care facilities. We performed confirmatory factor analysis to replicate the higher order factor structure reported in previous research. We conducted item and reliability analysis, also correlation analysis, to examine concurrent validity. RESULTS: One hundred fifty-eight patients completed the ECR-M16-G (women 61%, mean age 57.9, SD = 11.1). We replicated the factor structure with the subscales Attachment Anxiety and Attachment Avoidance as second-order factors and Worrying about relationships, Frustration about unavailability, Discomfort with close others, and Turning away from others as first-order factors. An adjusted model that interchanged factor loadings of items 4 and 10 showed good fit (Comparative Fit Index = 0.94, Non-Normed Fit Index = 0.93, root mean square error of approximation = 0.05). Subscales showed acceptable to good internal consistency (anxiety α = .81 and avoidance α = .78). Attachment insecurity (mean = 3.1, SD = 1.0) was positively associated with depression, anxiety, demoralization (P < 0.001), and symptom burden (P = 0.02) and negatively associated with spiritual well-being (P < 0.001). CONCLUSION: The ECR-M16-G is a valid and reliable measure of attachment insecurity in patients with advanced cancer and can be recommended as a tool for clinical care and further research.

Cancer-and-treatment-specific distress and its impact on posttraumatic stress in patients undergoing allogeneic hematopoietic stem cell transplantation (HSCT).

BACKGROUND: In this prospective multicenter study, we investigated cancer-and-treatment-specific distress (CTXD) and its impact on symptoms of posttraumatic stress disorder (PTSD) in patients undergoing allogeneic hematopoietic stem cell transplantation (HSCT). METHODS: Patients were consulted before (T0, N = 239), 3 (T1, N = 150), and 12 months (T2, N = 102) after HSCT. Medical (eg, diagnosis and pretreatment) and demographic information, CTXD and PTSD (PCL-C) were assessed. RESULTS: Random intercept models revealed that the sum score of CTXD was highest pre-HSCT (T0), decreased by T1 (γ = -.18, 95% CI [-.26/-.09]), and by T2 (γ = -.10, 95% CI [-.20/-.00]). Uncertainty, family strain, and health burden were rated most distressing during HSCT. Uncertainty and family strain decreased from T0 to T1 (γ = -.30, 95% CI [-.42/-.17]; γ = -.10, 95% CI [-.20/-.00]) and health burden from T1 to T2 (γ = -.21, 95% CI [-.36/.05]). Women were more likely to report uncertainty (γ = .38, 95% CI [.19/.58]), family strain (γ = .38, 95% CI [.19/.58]), and concerns regarding appearance and sexuality (γ = .31, 95% CI [.14/.47]) than men. Uncertainty (γ = .18, 95% CI [.12/.24]), appearance and sexuality (γ = .09, 95% CI [.01/.16]), and health burden (γ = .21, 95% CI [.14/.27]) emerged as predictors of PTSD symptomatology across the 3 assessment points. CONCLUSIONS: Our data provide first evidence regarding the course of 6 dimensions of CTXD during HSCT and their impact on PTSD symptomatology. Specifically, results emphasize the major burden of uncertainty pre-HSCT and the impact of uncertainty and concerns regarding appearance and sexuality on PTSD symptomatology.

Posttraumatic stress disorder symptomatology in the course of allogeneic HSCT: a prospective study.

PURPOSE: Despite the life-threatening character of allogeneic hematopoietic stem cell transplantation (allogeneic HSCT), very few longitudinal research exists on posttraumatic stress disorder (PTSD) symptomatology in this patient group. We investigated prevalence, temporal course and predictors of PTSD symptomatology in this population. METHODS: Patients were assessed before conditioning (T0), 100 days (T1), and 12 months after HSCT (T2). PTSD symptomatology was measured with the PTSD Checklist-Civilian Version. We conducted multilevel modeling and multiple regression analyses. RESULTS: Two hundred thirty-nine patients participated at baseline, 150 at T1, and 102 at T2. Up to 15 % met the criteria for PTSD at least once during the course of assessment. Fifty-two percent showed diagnostic relevant levels of intrusion, 30 % of avoidance, and 33 % of arousal at least once. Apart from arousal, which increased between T0 and T1 (γ = 0.56, p = 0.03), no other severity score significantly differed between time points. Being impaired by pain (γ = 2.89, p < 0.01), pain level (γ = 0.63, p = 0.02), and being female (γ = 3.81, p < 0.01) emerged as significant predictors of PTSD symptomatology when taking into account all time points. Acute plus chronic graft-versus-host-disease and longer hospital stay predicted PTSD symptomatology at T2 (γ = 3.39, p = 0.04; γ = 0.1, p = 0.03). CONCLUSIONS: A considerable number of patients undergoing allogeneic HSCT met the criteria for PTSD. PTSD symptomatology is prominent at all assessment points. Burden of pain, being female, and medical complications are risk factors for elevated levels of PTSD symptomatology. IMPLICATIONS FOR CANCER SURVIVORS: Psychological support should be offered not only after treatment but also in the long-term and even before HSCT. Professionals should be aware of the psychological consequences accompanied by pain and complications.

Death-Related Anxiety in Patients With Advanced Cancer: Validation of the German Version of the Death and Dying Distress Scale.

CONTEXT: Distress and anxiety about issues related to death and dying is commonly experienced in patients with advanced disease and a limited life expectancy. OBJECTIVES: To evaluate the psychometric properties of the German version of the Death and Dying Distress Scale (DADDS-G) in advanced cancer patients. METHODS: We recruited advanced patients with mixed tumor entities (Union for International Cancer Control [UICC] Stage III/IV) treated in two German University Medical Centers during their outpatient treatment. After testing a preliminary version of the state-of-the-art translated original Death and Dying Distress Scale, we analyzed the psychometric properties of the shortened nine-item adapted DADDS-G using validated instruments measuring distress, anxiety, depression, fear of progression, and quality of life. RESULTS: We obtained complete questionnaires from 77 of 93 patients with advanced cancer (response rate: 83%). Participants were mostly married or cohabiting (75%), well-educated, and both sexes were almost equally represented (52% men; mean age 58 years, SD = 12). The total mean DADDS-G score was 13.3 (SD = 8.5). Patients reported to be most distressed by the feeling of being a burden to others. The exploratory factor analysis led to one factor that accounted for more than 59% of the variance. The DADDS-G's internal consistency was excellent with Cronbach alpha = 0.91. The confirmatory factor analysis demonstrated a very good model fit. Death-related anxiety was significantly associated with distress, depression, anxiety, fear of progression, and lower quality of life (P < 0.001). CONCLUSION: Results provide further evidence that the DADDS-G is a valid and reliable instrument of high clinical relevance for use in patients with advanced cancer.

Efficacy of a brief manualized intervention Managing Cancer and Living Meaningfully (CALM) adapted to German cancer care settings: study protocol for a randomized controlled trial.

BACKGROUND: Although psycho-oncological interventions have been shown to significantly reduce symptoms of anxiety and depression and enhance quality of life, a substantial number of patients with advanced cancer do not receive psycho-oncological interventions tailored to their individual situation. Given the lack of reliable data on the efficacy of psycho-oncological interventions in palliative care settings, we aim to examine the efficacy of a brief, manualized individual psychotherapy for patients with advanced cancer: Managing Cancer and Living Meaningfully (CALM). CALM aims to reduce depression and death anxiety, to strengthen communication with health care providers, and to enhance hope and meaning in life. We adapted the intervention for German cancer care settings. METHODS/DESIGN: We use a single-blinded randomized-controlled trial design with two treatment conditions: intervention group (IG, CALM) and control group (CG). Patients in the CG receive a usual non-manualized supportive psycho-oncological intervention (SPI). Patients are randomized between the IG and CG and assessed at baseline (t0), after three (t1) and after 6 months (t2). We include patients with a malignant solid tumor who have tumor stages of III or IV (UICC classification). Patients who are included in the study are at least 18 years old, speak German fluently, score greater than or equal to nine on the PHQ-9 or/and greater than or equal to five on the Distress Thermometer. It is further necessary that there is no evidence of severe cognitive impairments. We measure depression, anxiety, distress, quality of life, demoralization, symptom distress, fatigue as well as spiritual well-being, posttraumatic growth and close relationship experiences using validated questionnaires. We hypothesize that patients in the IG will show a significantly lower level of depression 6 months after baseline compared to patients in the CG. We further hypothesize a significant reduction in anxiety and fatigue as well as significant improvements in psychological and spiritual well-being, meaning and post-traumatic growth in the IG compared to CG 6 months after baseline. DISCUSSION: Our study will contribute important statistical evidence on whether CALM can reduce depression and existential distress in a German sample of advanced and highly distressed cancer patients. TRIAL REGISTRATION: ClinicalTrials.gov NCT02051660.

Cognitive functioning in allogeneic hematopoietic stem cell transplantation recipients and its medical correlates: a prospective multicenter study.

BACKGROUND: Owing to its neurotoxicity, allogeneic hematopoietic stem cell transplantation (HSCT) carries risks for cognitive impairment. In this multicenter study, we prospectively evaluated cognitive functioning and its medical and demographic correlates in patients undergoing allogeneic HSCT. METHODS: A total of 102 patients were consecutively assessed prior to (T0 ), 100 ± 20 days (T1 ) after, and 12 ± 1 months (T2 ) after HSCT (61% men, 41% acute myeloid leukemia). A comprehensive neuropsychological test battery was applied to evaluate attention, memory, executive function, and fine motor function, summing up into 14 test scores. RESULTS: Before and after HSCT, patients performed below test norms in up to 50% of the test scores. Patients were mostly impaired on word fluency (24%, T0 ), fine motor function, and verbal delayed recall (19% each, T2 ). Impairment on ≥ 1/5 cognitive domains occurred in 47% (T0 ) and 41% (T2 ) of the patients. Performance (mean z-scores) partially improved over time (i.e., visual span forward, verbal learning, and word fluency). However, from baseline to T2 , 16% of the patients showed reliable decline on ≥ 3/14 test scores (reliable change index method). For the majority of neuropsychological subtests, no associations with conditioning intensity, total body irradiation, graft-versus-host disease, cyclosporine treatment, and length of hospital stay were found. Age and premorbid intelligence level were consistently associated with cognition. CONCLUSIONS: Below average cognitive performance is common in this patient group. In addition, a subgroup shows reliable cognitive decline after allogeneic HSCT. Healthcare professionals should be aware of these treatment-related cognitive side effects.

[Outpatient psycho-oncological care for family members and patients: access, psychological distress and supportive care needs]. / Angehörige und Patienten in der ambulanten psychoonkologischen Versorgung: Zugangswege, psychische Belastungen und Unterstützungsbedürfnisse.

Supportive care needs of family members of cancer patients are often overlooked within psychosocial care. A screening measure was sent to 132 family members and 362 cancer patients (response rate > 95 %) after telephone registration at a specialized outpatient clinic for psycho-oncology at the University Medical Center Hamburg-Eppendorf. The majority of participants was informed about the outpatient clinic for psycho-oncology through advice by third parties. More than 90 % of family members and cancer patients show high levels of distress; 49 % of family members and 59 % of patients had moderate to high levels of depression; 58 % of family members and 61 % of patients had moderate to high levels of anxiety. No gender differences were observed in both groups. Most frequent supportive care needs in both groups refer to fear of recurrence, dealing with uncertainty, sadness and keeping a positive outlook. Our findings emphasize the need for specific psycho-oncological interventions.