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Purpose Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC. Methods In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer. Results Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach’s α = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers’ burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23–.69; p = 0.001). Conclusion The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.

Background: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg’s (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy). Aim: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control. Design: Randomised controlled trial. Setting/participants: Informal caregivers of palliative in-patients. Methods: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock’s Health Belief Model. Results: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial. Conclusion: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers’ psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.

Background: The purpose of this study was to contribute to the analysis of older people’s Meaning in Life and the implications of dwelling in residential and nursing homes. The transition from one’...

Die aktuelle S3-Leitlinie Palliativmedizin widmet sich vier Symptomen, die unheilbar kranke Krebspatienten besonders haufig beeintrachtigen: Atemnot, Tumorschmerz, Obstipation und Depression. Wie konnen Sie diese Symptome erfassen und behandeln?

We intended to study unaddressed psychosocial and spiritual needs among older people (of at least 65 years of age) living in nine residential/nursing homes in Bavaria in Southern Germany. We conducted an anonymous cross-sectional study with standardised questionnaires (i.e., Spiritual Needs Questionnaire, Brief Multidimensional Life Satisfaction Scale, Schedule for Meaning in Life Evaluation, etc.). Religious needs were predicted best by residents’ religious trust. Existential needs and inner peace needs correlated moderately with grief, and were predicted best by family/social support needs. All members of an interdisciplinary team should be trained in the specific competence of recognising older people's unmet spiritual needs. When these needs are recognised, caregivers and relatives have the chance to react.

Objective:The experience of “meaning in life” (MiL) is a major aspect of life satisfaction and psychological well-being. To assess this highly individual construct, idiographic measures with open-response formats have been developed. However, it can be challenging to categorize these individual experiences for interindividual comparisons. Our study aimed to derive MiL categories from individual listings and develop an integrative MiL model.Method:University students were asked to rate 58 MiL providing aspects recently found in a nationwide study using the Schedule for Meaning in Life Evaluation (SMiLE), an MiL instrument allowing for open responses. Pearson's correlations and factor analyses were used to test the unidimensionality of subsequently derived higher-order MiL categories. Multidimensional scaling, cluster analysis, and factor analysis were performed to further analyze a latent MiL structure.Results:A total of 340 students participated in the study. Some 11 unidimensional categories consisting of 34 meaning-providing aspects were summarized into a circumplex model with four MiL domains: leisure/health, work/finances, culture/spirituality, and relationships (family, partnership, social relations).Significance of results:This model seems to incorporate a major portion of individual respondent-generated MiL listings. It may be useful for future idiographic MiL studies to help organize individual experiences of MiL and allow for higher-level interindividual comparisons. Further studies including different samples are necessary to confirm this model or derive other MiL domains, for example, in palliative care patients or patients who are confronted with a loss of meaning.

The experience of Meaning in Life (MiL) is a major protective factor against feelings of hopelessness and wishes for hastened death in palliative care (PC) patients. However, most instruments for MiL assessment have been developed only in Western countries so far. Little is known about MiL experience in Asian PC patients.This study aimed to provide a Hindi version of the Schedule for Meaning in Life Evaluation (SMiLE), test its feasibility and validity in Indian PC patients, and compare the results with previous studies in Germany.Indian PC patients in a hospice for the destitute were eligible to participate in this cross-sectional study. In the SMiLE instrument, respondents individually listed MiL-giving areas before rating their satisfaction with and importance of these areas. Overall indices of satisfaction (IoS, range 0-100), weighting (IoW, range 0-100), and weighted satisfaction (IoWS, range 0-100) were calculated.A Hindi forward-backward translation of the SMiLE was made. Two hundred fifty-eight Indian PC patients took part in the study (response rate 93.5%). Convergent validity of the SMiLE was found with the World Health Organization Quality of Life-Brief version (r = 0.17; P = 0.008) and the Idler Index of Religiosity (public religiousness: r = 0.25, P 0.001 and private religiousness: r = 0.29, P 0.001). Indian PC patients' IoW was 65.8 ± 22.1, IoS 68.6 ± 17.4, and IoWS 70.2 ± 17.0. In multivariate analyses of covariance, they differed significantly from German PC patients only in IoW (IoW: 84.8 ± 11.5, P 0.001; IoS: 70.2 ± 19.7; IoWS: 72.0 ± 19.4). Compared with Germans, Indians more often listed spirituality (P 0.001) and social commitment (P 0.001) and less often social relations (P = 0.008).Preliminary results indicate good feasibility and validity of the Hindi version of the SMiLE. MiL experience also seems to be a coping resource for Indian PC patients.

Objectives:Mindfulness is a concept of growing impact on psychotherapy and has been shown to be effective for stress reduction and to improve psychological well-being. Existential Behavioural Therapy (EBT) was developed to support relatives of palliative care (PC) patients to cope with their situation during caregiving and bereavement. Mindfulness training was a core element of the intervention.We investigated the relationship between mindfulness, mental distress, and psychological well-being in informal caregivers, and evaluated if the effects of the intervention were mediated by mindfulness.Methods:Relatives of PC inpatients took part in a randomized-controlled EBT trial and completed the Cognitive and Affective Mindfulness Scale-Revised, items from the Five Facets of Mindfulness as well as the Brief Symptom Inventory, the Satisfaction with Life Scale, the WHOQOL-BREF, a numerical rating scale on quality of life (range 0–10), and the Schedule for Meaning in Life Evaluation at pre- and post-intervention, and a 3- and 12-months follow-up.Results:One-hundred-and-thirty carers were included, most of them (71.6%) recently being bereaved at the beginning of the intervention. High correlations between mindfulness and mental distress (r = −0.51, p r = 0.52, p Significance of results:Mindfulness seems to be a promising concept in supporting informal caregivers of PC patients. Further research is needed to identify the required format and intensity of mindfulness practice necessary for improvement.

Objective:Several interventions have been developed during recent years to support informal caregivers of palliative patients. However, these trials reported low enrollment rates. Employing a newly developed group intervention, existential behavioral therapy (EBT), one study reported that only 13.6% of approached informal caregivers participated. The purpose of our present study was to identify the reasons for this low enrollment rate in order to improve future support designs.Method:All participants in the EBT trial (intervention vs. standard-care control group) as well as those who declined participation during a 4-month recruitment period were studied prospectively over 12 months. Andersen's behavioral model of healthcare service use was employed to identify group differences between acceptors and decliners: predisposing (age, gender, education, family status, relationship), enabling (social support, distance to hospital, caring vs. bereaved), and need factors (psychological distress, quality of life) were evaluated in a binary-logistic model.Results:Some 94 decliners were compared to 160 EBT participants (n = 81 intervention, n = 79 control). Caregivers who took part were significantly more distressed and suffered from a lower quality of life compared to decliners. Not only these need factors but also predisposing (age p = 0.05). While all groups had mean anxiety scores below the cutoff at 12-month follow-up, decliners showed better improvement in anxiety compared to EBT participants (intervention p = 0.04, controls p = 0.03).Significance of results:On average, decliners are less burdened: they may be more resilient, may have better coping strategies, or already have a sufficient support network in place. Screening caregivers with regard to their experienced quality of life and targeting those in need, especially younger caregivers with low levels of quality of life, may help to allocate resources more appropriately.

Providing care for terminally ill family members places an enormous burden on informal caregivers. Meaning in life (MiL) may be a protective factor, but is jeopardised in caregiving and bereavement. This study evaluates the following questions: To what extent do bereaved informal caregivers of palliative care (PC) patients experience meaning in their lives? What differences emerge in carers compared to the general German population? How does MiL relate to well-being in former caregivers?Eighty-four bereaved PC caregivers completed the Schedule for Meaning in Life Evaluation, the Brief Symptom Inventory, the WHOQOL-BREF, a single-item numerical rating scale of quality of life, and the Satisfaction with Life Scale. The experience of MiL of bereaved caregivers was compared to a representative population sample (n=977).The overall MiL fulfillment of bereaved caregivers (69 % female, age 55.5 ± 12.9 years) was significantly lower than in the general population (68.5 ± 19.2 vs. 83.3 ± 14, p.001), as was the overall importance ascribed to their meaning framework (76.6 ± 13.6 vs. 85.6 ± 12.3, p .001). PC caregivers are far more likely to list friends, leisure, nature/animals, and altruism. Higher MiL was correlated with better life satisfaction and quality of life.Coping with the loss of a loved one is associated with changes in MiL framework and considerably impairs a carer's experience of MiL fulfillment. Individual MiL is associated with well-being in PC caregivers during early bereavement. Specific interventions for carers targeted at meaning reconstruction during palliative care and bereavement are needed to help individuals regain a sense of meaning and purpose.

Informal caregivers of palliative patients took part in existential behavioral therapy (EBT), a group intervention comprising mindfulness exercises to reduce psychological distress and improve quality of life.This study examined what the participants perceived as helpful to cope with their loss during the first year of bereavement, particularly with regard to the EBT intervention.Sixteen problem-centered, semi-structured interviews were evaluated with content analysis.Two main categories were found: social support and self-regulation. Social support includes sense of belonging as well as emotional, cognitive, and practical help experienced from others. Mindfulness and acceptance, a clear focus on the positive, and orientation toward the future were helpful strategies of self-regulation; these were also part of the EBT intervention. Mindfulness was understood as permitting emotions and acceptance of one's inner processes, even if they were not pleasant, and was found to be helpful to stop ruminative thinking.The categories considered as being helpful parallel core elements of EBT and recent grief theories. The intervention was found to be supportive and met the needs of the participants. The interviewees appreciated the continuity of EBT support from palliative care into bereavement.

This exploratory study investigated meaning in life (MiL) in patients with progressive supranuclear palsy (PSP). In the “Schedule for Meaning in Life Evaluation” (SMiLE), respondents list individual MiL areas before rating their current satisfaction and importance with them (index of weighting [IoW], index of satisfaction [IoS], and index of weighted satisfaction [IoWS], range 0-100). A total of 38 patients with PSP completed the SMiLE (IoS: 68.6 ± 25.6, IoW: 79.6 ± 12.6, and IoWS: 69.2 ± 26.1). A representative sample of healthy participants (n = 977) scored significantly higher in the IoS (82.8 ± 14.7, P < .001), the IoW (85.6 ± 12.3, P = .006), and the IoWS (83.3 ± 14.8, P < .001). Compared to healthy individuals, patients with PSP were less likely to list health ( P = .001) and more likely to list partner ( P = .04), leisure ( P = .01), home/garden ( P = .01), and pleasure ( P = .02). Patients with PSP seem to focus on supportive relationships and leisure, while the decreasing health status is becoming less important to them.

BACKGROUND: Existential behavioural therapy (EBT) was developed to support informal caregivers of palliative patients in the last stage of life and during bereavement as a manualised group psychotherapy comprising six sessions. We tested the effectiveness of EBT on mental stress and quality of life (QOL). METHODS: Informal caregivers were randomly assigned (1:1) to EBT or a treatment-as-usual control group using computer-generated numbers in blocks of 10. Primary outcomes were assessed with the Brief Symptom Inventory (subscales somatisation, anxiety and depression), the Satisfaction with Life Scale (SWLS), the WHOQOL-BREF and a numeric rating scale for QOL (QOL-NRS, range 0-10). Data were collected at baseline, pre-treatment, post-treatment and follow-ups after 3 and 12âeuro0/00months. Treatment effects were assessed with a multivariate analysis of covariance. RESULTS: Out of 160 relatives, 81 were assigned to EBT and 79 to the control group. Participants were 54.5âeuro0/00±âeuro0/0013.2âeuro0/00years old; 69.9% were female. The multivariate model was significant for the pre-/post-comparison (pâeuro0/00=âeuro0/000.005) and the pre-/12-month comparison (pâeuro0/00=âeuro0/000.05) but not for the pre-/3-month comparison. Medium to large effects on anxiety and QOL (SWLS, WHOQOL-BREF, QOL-NRS) were found at post-treatment; medium effects on depression and QOL (QOL-NRS) emerged in the 12-month follow-up. No adverse effects of the intervention were observed. CONCLUSION: Existential behavioural therapy appears to exert beneficial effects on distress and QOL of informal caregivers of palliative patients. Further longitudinal evidence is needed to confirm these findings. Copyright © 2013 John Wiley & Sons, Ltd.

Background Existential behavioural therapy (EBT) is a recently developed intervention to support informal caregivers of patients in a specialist palliative care unit and was initially established as a six-session group programme. This pilot study aimed to test the feasibility and acceptability of an adapted short-term, individual approach of EBT in preparation for a randomized controlled trial (RCT). Methods The study was conducted in a prospective, mixed methods design including four quantitiative assessments with embedded qualitative interviews at one assessment. The intervention offered two one-hour therapeutic sessions focusing on (1) mindfulness and (2) existential meaning-in-life as a source of strength provided by a trained psychotherapist. To test the feasibility of the intervention, doubling of the participation rate, compared to the previous group study (13,6 %) as well as an attrition rate of less than 30 % were set as thresholds. To test the acceptability of the intervention, self-rated usefulness of individual aspects of the intervention and the frequency of implementing therapeutic elements by the carers were set as criteria. Acceptability testing also included the number of participants who completed both sessions, where we expected more than 75 % as a criterion for acceptability. Return rates of quantitative questionnaires were set as criteria for the feasibility of data collection (

Background The construct of “meaning in life” (MiL) has raised the interest of clinicians working in psycho-oncology and end-of-life care. It has become a topic of scientific investigation where diverse assessment approaches have been applied. Aims: We present a comprehensive systematic review of existing MiL assessment instruments. Methods Electronic searches of articles published in English peer-reviewed journals were performed in Psycinfo, Medline, Embase and Cinahl. Instruments are appraised with regard to ten measurement properties. Results In total, 59 nomothetic and idiographic MiL instruments were identified. Most instruments were developed in North America and meet basic psychometric criteria. They assess presence of and search for MiL, crisis and sources of MiL, meaning making, meaningful activity, MiL in the context of illness, breadth, depth, and other structural indicators. These aspects are largely consistent with existing MiL definitions. Nine out of 59 instruments included cancer populations in test development. Conclusions This overview of available instruments underscores the complexity of the construct and might assist researchers to select an appropriate instrument for their research needs. Finally, it points to the need for more integrative theorizing and research on MiL. Copyright © 2012 John Wiley & Sons, Ltd.

Context The construct "meaning in life" (MiL) has recently raised the interest of clinicians working in psycho-oncology and end-of-life care and has become a topic of scientific investigation. Objectives The aim of this study was to compare MiL in palliative care (PC) patients with a representative sample of the German population. Methods In this cross-sectional study, all PC patients treated in the PC inpatient unit and through the PC consult service at Ludwig-Maximilians-University Hospital, Munich, from May 2005 to July 2007 were eligible to participate. Patients were interviewed by a doctoral student, psychologist, or physician, all previously trained to administer the Schedule for Meaning in Life Evaluation (SMiLE) in a standardized way. In the SMiLE, respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20–100), satisfaction (IoS, range 0–100), and weighted satisfaction (IoWS, range 0–100) are calculated. Results One hundred PC patients completed the SMiLE: the IoS was 70.2±19.7, the IoW was 84.7±11.5, and the IoWS was 72.0±19.4. The representative sample (n=977) scored significantly higher in the IoS (82.8±14.7) and IoWS (83.3±14.8) but not in the IoW (85.6±12.3). Compared with healthy individuals, PC patients are more likely to list partner, friends, leisure, spirituality, well-being, nature/animals, and pleasure as meaningful areas. Examining the satisfaction ratings, it is noteworthy that PC patients' satisfaction scores are fairly high (and not lower than their healthy counterparts') in a number of domains: family, partner, home/garden, spirituality, and finances. On the other hand, they score significantly lower in nature/animals, leisure, friends, well-being, altruism, work, pleasure, and health. Conclusion These findings underscore the potential of the SMiLE for identifying areas that are particularly important to individuals, and that can be targeted by the PC team to improve overall life satisfaction at the end of life.

The aim of this study was to determine the associations between health locus of control (LoC), causal attributions and coping in tumour patients prior to autologous peripheral blood stem cell transplantation. Patients completed the Questionnaire of Health Related Control Expectancies, the Questionnaire of Personal Illness Causes (QPIC), and the Freiburg Questionnaire of Coping with Illness. A total of 126 patients (45% women; 54% suffering from a multiple myeloma, 29% from non-Hodgkin lymphomas, and 17% from other malignancies) participated in the study. Cluster analysis yielded four LoC clusters: 'fatalistic external', 'powerful others', 'yeah-sayer' and 'double external'. Self-blaming QPIC items were positively correlated with depressive coping, and 'fate or destiny' attributions with religious coping (P

Background The concept of meaning in life (MIL) has become a central one in recent years, particularly in psycho-oncology and palliative care. The Schedule for Meaning in Life Evaluation (SMILE) has been developed to allow individuals to choose the life areas that they consider to be important for their own MIL. This approach relates to the “World Health Organisation” definition of quality of life (QOL) as an individual’s perception of his own position. The aims of this study were (i) to assess MIL in a representative sample of the Swiss population according to the three linguistic regions and (ii) to evaluate whether MIL constitutes a significant determinant of the perceived QOL. Methods A telephone survey of the Swiss population, performed by a professional survey company, was conducted between November and December 2013. The interview included the SMILE, perceived QOL (0–10) and health status (1–5), and various sociodemographic variables. In the SMILE, an index of weighting (IOW, 20–100), an index of satisfaction (IOS, 0–100), and a total SMILE index (IOWS, 0–100) are calculated from the areas mentioned by the participants as providing MIL. Results Among the 6671 telephonic contacts realized, 1015 (15 %) participants completed the survey: 405 French, 400 German and 210 Italian participants. “Family” (80.2 %), “occupation/work” (51 %), and “social relations” (43.3 %) were the most cited MIL-relevant categories. Italian participants listed “health” more frequently than German and French participants (50.4 % vs 31.5 % and 24.8 % respectively, χ2 = 12.229, p = .002). Age, gender, education, employment, and marital status significantly influenced either the MIL scores or the MIL-relevant categories. Linear regression analyses indicate that 24.3 % of the QOL variance (p = .000) is explained by health status (B = .609, IC = .490-.728, p = .000), MIL (B = .034, IC = .028-.041, p = .000) and socioeconomic status (F = 11.01, p = .000). Conclusion The major finding of our analysis highlights the positive and significant influence of MIL on the perceived QOL in a representative sample of a general, multilingual and multicultural population. This result indicates that the existential dimension is not only determinant for QOL in some critical life events, as shown e.g. in psycho-oncology and palliative care, but also in everyday life.

Meaning in life (MiL) is a construct that varies across individuals, situations, cultures, and countries, and protects against emotional distress at the end of life.To examine MiL in inpatients with advanced cancer from Barcelona, Spain, and to compare the findings with those obtained in German and Swiss samples.This was a cross-sectional study in which the Schedule for Meaning in Life Evaluation (SMiLE) was administered. The SMiLE asks respondents to list individual areas that give meaning in their lives and then to rate their current level of importance and satisfaction with the listed areas.A total of 101 inpatients completed the SMiLE. The Index of Satisfaction was 76.8 ± 21.1, the Index of Weighting was 88.0 ± 13.0, and the Index of Weighted Satisfaction was 76.9 ± 20.7. Family, partnership, well-being, and friends were the four areas listed by the largest proportion of Spanish patients. Compared with the German sample, Spanish patients were more likely to list well-being (P0.01) and pleasure (P0.05) and less likely to list animals/nature, leisure time, and finances (P0.01). With respect to their Swiss counterparts, Spanish patients were more likely to list health (P0.01) and less likely to list friends, leisure time, animals/nature, and finances (P0.01).Differences were identified in the areas of MiL listed by the participants according to country of origin. Compared with their German and Swiss counterparts, the Spanish patients listed more areas involving interpersonal relationships. Interpersonal relationships, at both the family and wider social level, are reported to be the areas that give the greatest MiL to these patients. These aspects, therefore, should be considered when drawing up care plans designed to help patients achieve the maximum possible comfort and quality of life.

We conducted a phase-I study to test the practicability and usefulness of a short (15-30 min) clinical interview for the assessment of cancer patients' spiritual needs and preferences. Physicians assessed the spirituality of their patients using the semi-structured interview SPIR. The interview focuses on the meaning and effect of spirituality in the patient's life and coping system. Visual Analogue Scales (VAS) and Questionnaires were completed following the interview for rating whether SPIR had been helpful or distressing, and to what extent spirituality seemed important in the patient's life and in coping with cancer disease. Thirty oncological outpatients who all agreed to participate were included. The majority wanted their doctor to be interested in their spiritual orientation. Patients and interviewing physicians evaluated the SPIR interview as helpful (patients mean 6.76 +/- 2.5, physicians 7.31 +/- 1.9, scale from 0 to 10) and non-distressing (patients 1.29 +/- 2.5, physicians 1.15 +/- 1.3, scale from 0 to 10). Following the interview, doctors were able to correctly gauge the importance of spirituality for their patients. Patients who considered the interview as very helpful (VAS > 7) were more often female (P = 0.002). There were no differences between patients who evaluated the SPIR as very helpful and those who did not, as far as diagnosis, educational level or belonging to a religious community were concerned. The present study shows that a short clinical assessment of cancer patients' spirituality is well received by both patients and physicians. The SPIR interview may be a helpful tool for addressing the spiritual domain, planning referrals and ultimately strengthening the patient-physician relationship.

Long-term survivors of germ cell tumours (GCT) are at increased risk of cardiovascular morbidity. We investigated the use of tobacco in patients after therapy for GCT. Four hundred and seventy-four patients treated between 1979 and 2000 at the University of Munich were asked to complete a self-report questionnaire on psychosocial dimensions which included items on tobacco smoking before and after treatment of GCT. Three hundred and forty-one patients (72%) returned a completed questionnaire. The median follow-up period was 9.6 years. 160 of 341 patients (47%) reported to smoke at the time of GCT diagnosis. Of those, 134 (84%) had changed their smoking behavior with 32 patients (20%) having reduced, 56 (35%) having intermittently quitted and 46 (29%) having definitively quitted smoking. Patients reduced or stopped smoking irrespective of tumour histology, tumour stage, whether they had received chemotherapy or not, and irrespective of the number of chemotherapy courses applied. Most patients changed their habit of tobacco smoking after diagnosis and treatment of GCT but only a minority of patients are sustained quitters. Patients with GCT should be strongly encouraged to stop smoking or to participate in smoking cessation programs.

Purpose: To evaluate the influence of germ-cell tumour therapy on sexual functioning and subjective quality of life (QL). To investigate the communication about sexual problems between patients, their partners, and doctors. In all, 474 patients treated for germ-cell tumours at the Department of Internal Medicine III, Ludwig-Maximilians-University Munich, from 1979 to 2000 were asked to complete a self-report questionnaire concerning psychosocial dimensions and subjective QL (QLS; Henrich and Herschbach, 2000). In total, 341 patients returned a completed questionnaire (response rate, 71.9%). The median age at survey was 41.9 years and the median follow-up period after therapy was 9.6 years. Persisting sexual sequelae were lower than in the current literature: decreased sexual desire (7.1%), erection (10.0%), orgasm (10.2%), ejaculation (28.8%), sexual activity (8.5%), and sexual satisfaction (4.8%). In QL the satisfaction with ‘friends/acquaintances’ (P

The purpose of this study was to identify long-term psychosocial effects of allogenic, syngenic and autologous haematopoetic stem cell transplantation (HSCT) on relevant parameters (physical performance, role and sexual functioning, intimate relationships, professional and social rehabilitation). A total of 163 patients, who had undergone an autologous (11.6%), syngenic (3.1%) or allogenic (85.3%) HSCT at the Department of Internal Medicine III, Ludwig-Maximilians-University, during a preceding 16-year period, were asked to complete the Herschbach Questionnaire on Stress in Cancer Patients in order to evaluate their current psychosocial distress status. An additional questionnaire for demographic data was used. Reduced quality of life as a result of HSCT is restored to its pre-HSCT level by most patients within 2 years after transplantation (no differences between groups transplanted 2-5, 6-9 or >10 years ago). The majority of patients had serious problems with "fitness" (24%), followed by problems with "pain" (17.2%) and "fear/emotional stress" (14.1%). Professional reintegration is an important factor in patients' well-being. However, 30.7% of these patients did not return to work at all. Unemployed patients had significantly higher scores for pain, anxiety, sleep disorders, depression, impairments in social functioning, partnership and family life. Only 9.8% of all patients took part in a psychotherapeutic programme and 39.3% in a rehabilitation programme. Identifying strategies for risk patients (e.g. lower education and married) need to be developed in order to optimize support for this group. Although some patients show a higher distress score in anxiety/fear and psychophysical performance, only 9.8% of all patients took advantage of available psychotherapy.

Harvey's modern insight into the archetypal idea of the heart as the centre of blood motion transforms the heart into a machine which becomes a spare part interchangeable from any chest to any other {[}Hillman]. As we try to show in the case of Elmar, a 41-year-old technician 2 years after his transplantation, the possibilities of cardiac surgery and its archetypal foundations do not exclude a personalized and symbolic vision of both the `old' heart and the `new' one. Intrapersonal and therapeutic issues of this `inter-cardiac conflict' are discussed.

Context Increased altruism, self-transcendence, and quests for meaning in life (MiL) have been found in palliative care (PC) patients and their families who experience the finiteness of life. Similar changes were observed in healthy subjects who were experimentally confronted with their mortality. Objectives The study investigated how daily experiences of the transitoriness of life influence PC health care professionals' (HCPs) values, MiL, and religiousness. Methods In a cross-sectional study, the Schwartz Value Survey, the Schedule for Meaning in Life Evaluation, and the Idler Index of Religiosity were used to investigate personal values, MiL, and private religiousness. HCPs working in PC (confronted with death) were compared with a control group of HCPs working at maternity wards (MWs) using multivariate models. Differences were considered to be statistically significant at P Results Seventy PC- and 70 MW-HCPs took part in the study (response rate 74.0%). No differences between the groups were found in overall MiL satisfaction scores. PC-HCPs were significantly more religious than MW-HCPs; they listed spirituality and nature experience more often as areas in which they experience MiL. Furthermore, hedonism was more important for PC-HCPs, and they had higher scores in openness-to-change values (stimulation and self-direction). MW-HCPs were more likely to list family as a MiL area. They assigned more importance to health and scored higher in conservation values (conformity and security). Duration of professional experience did not influence these results. Conclusion Basic differences in values, MiL, and religiousness between PC-HCPs and MW-HCPs might have influenced the choice of working environment because no effect of job duration was observed. Longitudinal research is needed to confirm this hypothesis.

The construct of "meaning in life" (MiL) has raised the interest of clinicians working in psycho-oncology and end-of-life care. It has become a topic of scientific investigation where diverse assessment approaches have been applied.We present a comprehensive systematic review of existing MiL assessment instruments.Electronic searches of articles published in English peer-reviewed journals were performed in Psycinfo, Medline, Embase and Cinahl. Instruments are appraised with regard to ten measurement properties.In total, 59 nomothetic and idiographic MiL instruments were identified. Most instruments were developed in North America and meet basic psychometric criteria. They assess presence of and search for MiL, crisis and sources of MiL, meaning making, meaningful activity, MiL in the context of illness, breadth, depth, and other structural indicators. These aspects are largely consistent with existing MiL definitions. Nine out of 59 instruments included cancer populations in test development.This overview of available instruments underscores the complexity of the construct and might assist researchers to select an appropriate instrument for their research needs. Finally, it points to the need for more integrative theorizing and research on MiL.

The construct 'meaning in life' (MiL) has become increasingly important in palliative care. Several meaning-focused interventions have been developed recently. The aim of this study was to investigate MiL in patients with amyotrophic lateral sclerosis (ALS) and compare the findings with a representative sample of the German population. In the newly developed 'Schedule for Meaning in Life Evaluation' (SMiLE), respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20-100), satisfaction (IoS, range 0-100), and weighted satisfaction (IoWS, range 0-100) are calculated. Results of our study showed that 46 ALS patients completed the SMiLE: the IoS was 74.7 ± 20.2, the IoW 88.1 ± 10.1, and the IoWS 76.3 ± 20.5. Satisfaction with MiL was negatively associated with disease duration and degree of functional impairment. After adjustment for age, sex, and marital status, the representative sample (n = 977) scored significantly higher in the IoS (82.8 ± 14.7) and the IoWS (83.3 ± 14.8). Compared to the general population, ALS patients list more meaning-relevant areas, are more likely to list partner, and less likely to list health. Thus, response shift seems to be a central coping mechanism in ALS patients. Regarding their major MiL areas, they shift their focus away from decreasing health status and towards supportive relationships.

Purpose Deciding about the limitation of life-sustaining treatment (LST) is a major challenge for intensive care medicine. The aim of the study was to investigate the practices and perspectives of German intensive care nurses and physicians on limiting LST. Methods We conducted an anonymous, self-administered questionnaire survey among the 268 nurses and 95 physicians on all 10 intensive care units of the Munich University Hospital, Germany. Results The response rate was 53%. Of all respondents, 91% reported being confronted with the topic at least once a month. Although all reported limiting cardiopulmonary resuscitation, almost no one reported limiting artificial hydration. Half of nurses and junior physicians felt uncertain about the decision-making process. Junior physicians were most dissatisfied with their training for this task and expressed the highest fear of litigation. Nurses were less satisfied than physicians with the communication process. Both nurses and relatives were not routinely involved in decision making. There is no standardized documentation practice, and many notes are not readily accessible to nurses. Conclusions Limiting LST is common in German intensive care units. The major shortcomings are team communication, communication with the patient's family, and documentation of the decision-making process.

The Schedule for Meaning in Life Evaluation (SMiLE) is a respondent-generated instrument for the assessment of individual meaning in life (MiL). In the SMiLE, the respondents list three to seven areas that provide meaning to their lives before rating the current level of importance and satisfaction of each area. Indices of total weighting (IoW; range, 20-100), total satisfaction (IoS; range, 0-100), and total weighted satisfaction (IoWS; range, 0-100) are calculated. The objective of this study was to assess the feasibility, acceptability, and psychometric properties of this newly developed instrument in its German and English versions. A total of 599 students of the Ludwig-Maximilians University, Munich and the Royal College of Surgeons, Dublin, took part in the study (response rate, 95.4%). The mean IoW was 85.7+/-9.4, the mean IoS was 76.7+/-14.3, and the mean IoWS was 77.7+/-14.2. The instrument was neither distressing (1.3+/-1.9) nor time-consuming (1.9+/-1.9), as assessed by numeric rating scales (range, 0-10). Test-retest reliability of the IoWS was r=0.72 (P

Little is known about the effects of spiritual care training for professionals in palliative medicine. We therefore investigated prospectively the effects of such training over a six-month period. All 63 participants of the three and a half-day training were asked to fill out three questionnaires: before and after the training, as well as six months later. The questionnaires included demographic data, numeric rating scales about general attitudes towards the work in palliative care, the Self-Transcendence Scale (STS), the spiritual subscale of the Functional Assessment of Chronic Illness Therapy (FACIT-Sp) and the Idler Index of Religiosity (IIR). Forty-eight participants (76%) completed all three questionnaires (91% women, median age 49 years; 51% nurses, 16% hospice volunteers, 14% physicians). Significant and sustained improvements were found in self-perceived compassion for the dying (after the training: P =0.002; 6 months later: P=0.025), compassion for oneself (PB 0.001; P =0.013), attitude towards one's family (P =0.001; P =0.031), satisfaction with work (PB 0.001; P =0.039), reduction in work-related stress (PB 0.001; P =0.033), and attitude towards colleagues (P =0.039; P =0.040), as well as in the FACIT-Sp (PB 0.001; P =0.040). Our results suggest that the spiritual care training had a positive influence on the spiritual well-being and the attitudes of the participating palliative care professionals which was preserved over a six-month period.

To evaluate the relationship between personal values and individual quality of life (iQoL) in palliative care patients, 75 patients with advanced cancer or amyotrophic lateral sclerosis (ALS) were asked to complete a self-report questionnaire concerning personal values and a semi-structured interview on their iQoL. Sixty-four patients took part in the study (56% cancer, 44% ALS). The most important personal values were benevolence, self-direction, and universalism, whereas power, achievement, and stimulation were the least important. Self-transcendence values were higher than self-enhancement values in all patients. Compared with healthy adults, palliative care patients scored significantly higher in benevolence and lower in self-enhancement values. Conservation values (security, conformity, tradition) were correlated with higher levels of iQoL (P=0.03). There were no significant differences between ALS and cancer patients. These data suggest that conservation values protect the patients' iQoL in the palliative care situation. The observed shift towards self-transcendence values may be related to coping processes of terminally ill patients. The relationship between self-transcendence values and iQoL should be further investigated.

The Palliative Care Outcome Scale (POS) is a multidimensional instrument covering physical, psychosocial, spiritual, organizational, and practical concerns. This study validated the German version of the POS and used the tool in different palliative care settings in Germany and Austria. Patients and staff were asked to complete the POS three times and evaluate the questionnaire and the translation afterwards. One hundred eighteen patients (44 male, 74 female, mean age 63 years, all suffering from advanced cancer) completed the POS one time, 55 patients two times, and 36 patients three times. Spearman's rho was highly significant for pain, other symptoms, anxiety, and life worthwhile in the first two assessments. The third assessment showed significant correlations for pain, other symptoms, anxiety, and family anxiety. Seventy-seven of 87 patients answered questions regarding the scale and the translation. All questions other than "Over the past 3 days, have you felt good about yourself?" were understandable for patients. Almost half of the staff was undecided whether the tool was reflecting the patients' condition. In contrast, the majority of patients liked it. Thus, the German version of the POS is well accepted by patients and staff and appears to be valid, although there are some areas where the scale would benefit from expansion to more closely capture staff and patient concerns.

5086 Background: Only few studies have addressed sexual difficulties and sexual satisfactions as an area of subjective quality- of-life in long-term survivors of GCT. We investigated the sexual fun...

Background The construct "meaning-in-life" (MiL) has recently raised the interest of clinicians working in psycho-oncology and end-of-life care and has become a topic of scientific investigation. Difficulties regarding the measurement of MiL are related to the various theoretical and conceptual approaches and its inter-individual variability. Therefore the "Schedule for Meaning in Life Evaluation" (SMiLE), an individualized instrument for the assessment of MiL, was developed. The aim of this study was to evaluate MiL in a representative sample of the German population. Methods In the SMiLE, the respondents first indicate a minimum of three and maximum of seven areas which provide meaning to their life before rating their current level of importance and satisfaction of each area. Indices of total weighting (IoW, range 20–100), total satisfaction (IoS, range 0–100), and total weighted satisfaction (IoWS, range 0–100) are calculated. Results In July 2005, 1,004 Germans were randomly selected and interviewed (inclusion rate, 85.3%). 3,521 areas of MiL were listed and assigned to 13 a-posteriori categories. The mean IoS was 81.9 ± 15.1, the mean IoW was 84.6 ± 11.9, and the mean IoWS was 82.9 ± 14.8. In youth (16–19 y/o), "friends" were most important for MiL, in young adulthood (20–29 y/o) "partnership", in middle adulthood (30–39 y/o) "work", during retirement (60–69 y/o) "health" and "altruism", and in advanced age (70 y/o and more) "spirituality/religion" and "nature experience/animals". Conclusion This study is a first nationwide survey on individual MiL in a randomly selected, representative sample. The MiL areas of the age stages seem to correspond with Erikson's stages of psychosocial development.

4737 Background: Cigarette smoking is the most significant source of preventable morbidity and premature mortality in developed countries. As long-term survivors of GCT have been found to be at an increased risk of developing vascular events and second cancer, smoking cessation could be an important factor to improve health status and overall survival. The purpose of this study was to investigate the use of tobacco in patients after GCT therapy. Methods: 474 patients treated for GCT between 1979 and 2000 at the University of Munich were asked to complete a self-report questionnaire on psychosocial dimensions which included items on tobacco smoking before and after treatment of GCT. These data were compared with those on smoking habits in the general male population in Germany. Results: 341 of 474 patients (71.9%) returned a completed questionnaire. The median age of responding patients was 41.9 years at the time of the study and 31.2 years at the time of GCT diagnosis. The median follow-up period was 9.6 ...

Purpose The call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective of multi-disciplinary German experts working over years in the field of palliative care. Methods A focus group, using the structured consensus method of the improved nominal group technique (INGT), with nine experts from different disciplines was conducted in Germany. Results An abundance of topics (16) were identified, pointing at the complexity of the issue. Main topics were: quality of life, needs assessments of patients and relatives, resource assessment, surveillance of decision-making processes, as well as spiritual well-being. The following properties were claimed as essential for outcome criteria sensitivity, without additional burden on patients, easy applicability, scientific validity, and helpful for communication within the team, ethical discussions as well as for quality management. Conclusions The study identified topics considered important by experts in clinical practise. The discussions exposed the diversity of demands on outcome assessment put up by different stakeholder groups. This and the high number of relevant items show the complexity for the agreement on a unique set of outcome criteria. Further research considering other perspectives is needed.

Background Several studies investigated the relationship between mental disorders and suicidal ideation. However, little is known about physical illnesses being the major trigger for committed suicides. It is necessary to understand these risk factors to be able to meet the needs of patients in a palliative care setting. Methods Suicide, medical and police notes were retrospectively analysed from all autopsies conducted in 2009–11 at the University of Munich, Germany. Documented reasons for suicide were classified into a “physical disease” (PD) or “mental disease” (MD) group and compared with respect to their sociodemographic characteristics and autopsy outcomes. Results Of all 1069 cases, 18.9 % gave a PD as reason for committing suicide (MD, 32.7 %). Those indicating PD were older than MD (68.8 vs. 48.7 years; p