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Background. Hematopoietic stem cell transplantation (HSCT) is a curative treatment option for malignant and nonmalignant diseases that is highly distressing, especially for children. A valid assessment of pediatric patients' distress that is independent from their language skills would be beneficial. Research regarding HSCT-specific self-reporting or rater-reporting instruments is scarce. Method. In this single-center prospective study, pediatric patients and young adolescents undergoing HSCT were screened for mental and somatic distress using PO-Bado (Basic Documentation for Psycho-Oncology) ratings from parents and medical caregivers on eight observations days before, during, and up to 200 days after HSCT. Additionally, the stress biomarkers cortisol and α-amylase were monitored on the same observation days. Results. A total of 39 pediatric and young adult patients with a median age of 9.3 years (range 0.5–19.0), with 18 females (46%) and 21 males, were enrolled. The perceptions of the patients' somatic and mental distress of parents and medical caregivers of patients were significantly correlated (mental subscale ((r(276) = 0.31, p < 0.001., 95% CI of the correlation: (0.20, 0.41)) and somatic subscale ((r(284) = 0.46, p < 0.001., 95% CI of the correlation: 0.36, 0.54)). The time period between the days of transplantation until day +10 was rated as the most mentally and somatically distressing. Conclusions. While the somatic burden declined over time, the mental distress in the patients remained at a stable level, emphasizing the importance of further psychological and psycho-oncological support in these patients. The use of salivary α-amylase as a suitable distress detection marker in pediatric patients undergoing HSCT should be further investigated. [ABSTRACT FROM AUTHOR]

Background. Strong evidence supports the beneficial impact of exercise on cancer patients. However, the provision of exercise programs in Germany is highly heterogeneous. Therefore, the network OnkoAktiv (OA) enables patient consultations and referrals from coordinating regional OA centers (RE) into community-based exercise programs (CBEP). Objective. The aim of this study was to identify barriers and facilitators for the implementation of OA network structures from the perspective of RE and certified CBEP. Methods. This evaluation was executed in a sequential mixed methods design. We conducted 16 qualitative interviews with each leader in RE and the certified CBEP. Then, 89 certified CBEP were invited to a quantitative, cross-sectional survey. Results. We identified 11 facilitators each for RE and certified CBEP, 7 barriers for RE and 5 for certified CBEP. Barriers dealt with, for example, financing OA network structures, a lack of knowledge of exercise trainers, inadequate patient referral, and missing collaborations by healthcare professionals (HCPs). Most of the named facilitators were adequate internal organizational resources, support and reachability of OA staffs, and collaboration with HCPs. Conclusion. Our findings indicate different challenges for the implementation of OA network structures. Future implementation efforts should consider the evaluation of individual barriers and the development of specific solutions. [ABSTRACT FROM AUTHOR]

Introduction: Previous research showed that various factors are associated with the use of complementary medicine (CM) in cancer patients. This study aimed to analyse the expected benefits of CM use in its association with medical, sociodemographic and psychosocial variables. Methods: In a cross‐sectional survey, we assessed the use of CM, expected benefits of CM, depression and quality of life. An exploratory factor analysis (EFA) was performed. Multiple regression analysis was carried out with the factors derived from the EFA as dependent variables. Results: Based on 292 cancer CM user, EFA revealed two factors: a supportive effect (SPE) and an antitumoral effect (ATE). In the multiple regression analysis, reduced emotional functioning and the diagnosis of breast cancer are associated with the higher expectation of a supportive effect of CM (p < 0.001), explaining 7.1% of the variance. Emotional functioning, educational level and metastases are associated with higher expectation of an antitumoral effect of CM (p < 0.001) and explained 14.8% of the variance. Discussion: This study provides evidence that two overall domains (supportive effect and anti‐tumoural effect) characterise the benefits of CM expected by cancer patients. Psychosocial and medical variables are associated with both domains, but explain only small proportion of the variance. [ABSTRACT FROM AUTHOR]

Objective: Our aim was to explore whether general practitioners (GPs) communicate with cancer patients on complementary and integrative medicine (CIM) in a patient‐centred and case‐specific manner. Methods: We designed two cases of standardised breast cancer patients and allocated 29 GPs to hold a consultation either with Case 1 or Case 2. Case 1 presented with fears of possible physical side effects of hormone treatment. Case 2 feared a loss in social functioning because of nausea and emesis as possible side effects of chemotherapy. Consultations were audiotaped and analysed using the Roter Interaction Analysis System (RIAS). We analysed whether recommended CIM treatments and GPs' focus on psychosocial or medical and therapy‐related content differed according to whether they were counselling Case 1 or Case 2. Results: In consultations with Case 1, GPs rather focused on medical and therapy‐related content and most often recommended mistletoe, diets and sports. In contrast, GPs focused on psychosocial content and they most often recommended methods of self‐care when counselling Case 2. Conclusion: The GPs in our sample reacted case‐specifically to the patients' interest in CIM. Such responsive and patient‐centred communication is a valuable resource but is often time‐consuming. Adequate training and reimbursement should therefore be considered for GPs. [ABSTRACT FROM AUTHOR]

Objective: The goal of this study was to investigate barriers to utilisation of cancer rehabilitation by querying a large sample of various professionals in health care with a comprehensive set of barriers. Methods: We developed a questionnaire comprising 55 barriers to utilisation of cancer rehabilitation and administered it to four different types of medical, care and social work experts involved in the referral to cancer rehabilitation. An exploratory factor analysis was conducted and the extracted factors were ranked by mean values. Additionally, ANOVAs were calculated to test for group differences. Results: Our sample (N = 606) consisted of 249 physicians, 194 social workers, 105 nurses and 55 psychologists in Germany. We identified seven barrier‐dimensions: low appreciation of rehabilitation by professionals, insufficient coordination, insufficient application procedure, rehabilitation requirements not met, patients' unfulfilled demands, patients' social responsibilities and patients' coping style, with the latter being rated as the most obstructive thereof. Furthermore, we found statistically significant group differences for six of these factors with small‐ to medium‐sized effects. Conclusion: Our results support previous publications implicating the patients' coping style as a barrier. We furthermore found evidence for barriers relating to processes and organisational issues, thereby expanding on the scope of patient‐oriented publications. Suggestions for improving patients' health services accessibility are made. [ABSTRACT FROM AUTHOR]

Objective: We investigated the health‐related quality of life (HRQoL) of patients with gastrointestinal stromal tumours (GIST). Methods: In the multicentre PROSa study, the HRQoL of adult GIST patients was assessed between 2017 and 2019 using the European Organisation for Research and Treatment of Cancer HRQoL questionnaire (EORTC QLQ‐C30). We performed group comparisons and multivariate linear regressions. Results: Among 130 patients from 13 centres, the mean global HRQoL was 63.3 out of 100 points. Higher sores indicate better HRQoL. The highest restrictions were in emotional, social, role functioning, insomnia, fatigue, and pain. In multivariate linear regression, we found no significant differences between patients receiving tyrosine kinase inhibitor (TKI) treatment and those without TKI treatment as well as between patients treated with curative or with palliative intent. Patients who received multiple lines of TKI treatment had the most restrictions, notably in physical (unstandardized regression coefficient [B] = −15.7), role (B = −25.7), social (B = −18.4), and cognitive functioning (B = −19.7); fatigue (B = 15.93); general health (B = −14.23); and EORTC‐sum score (B = −13.82) compared to all other patients. Conclusion: The highest HRQoL restrictions were in GIST patients receiving multiple lines of TKI therapy. Underlying causes need further investigation. [ABSTRACT FROM AUTHOR]

Objectives: Fear of progression (FoP) among cancer survivors can adversely affect all areas of life. Existing instruments are too long for implementation in routine care. Therefore, we developed and tested a rapid screener for FoP (FoP‐Q‐RS). Methods: Data were derived from a register‐based study among cancer survivors. The 12‐item short form of the Fear‐of‐Progression Questionnaire (FoP‐Q‐SF) served as item‐pool. Confirmatory factor analysis (CFA) was applied to determine (a) fit indices including comparative fit index (CFI) and standardised root mean square residual (SRMR) and (b) measures of reliability including composite reliability (CR). Fit indices were compared to the FoP‐Q‐SF. Sensitivity and specificity were calculated to recommend a cut‐off (criterion: GAD‐7 score ≥10). Results: One thousand two cancer survivors participated (response rate: 53%). We selected five items for the FoP‐Q‐RS. CFA indicated acceptable fit (CFI = 0.936; SRMR = 0.048) and reliability (CR = 0.793). Fit indices were better than for the FoP‐Q‐SF. The cut‐off ≥12 showed optimal balance between sensitivity (72%) and specificity (70%), the cut‐off ≥10 revealed higher sensitivity (86%) with still tolerable specificity (52%). Conclusion: The FoP‐Q‐RS shows good psychometric properties and may be applied in routine care. Further studies on preferable cut‐offs and other populations are needed. [ABSTRACT FROM AUTHOR]

In order to quantify gaps in the provision of medical nutrition care in Germany and pinpoint specific areas of need, we collected data from patients, nurses and physicians. The results from the patient survey were published separately. A total of 506 participants from 69 certified centers answered the questions developed in cooperation with representatives from different professional groups (physicians, nurses and dietitians). Only about a third of participants reported that their institution provides structured pathways to nutritional counseling. 70.1% of those physicians reported that there was a specialist in nutrition available at their center while only 55.8% of nurses agreed. Only a quarter (24.2% and 26.9%) of physicians and nurses reported that their institution provided continuation of nutrition care after dismissal. A gap exists between need and consistent delivery of nutrition care services. Structured nutrition care pathways provided by legally certified nutrition professionals pathways are lacking. Cancer organizations may support this process by requiring documented nutrition care pathways and provision of services on a need based system into guidelines and certification criteria. [ABSTRACT FROM AUTHOR]

Individual adaptation at the end of life may be characterised by how patients fluctuate in their orientation towards losses and death or engagement in meaningful activities in daily life. To describe these intraindividual patterns of change, we conducted a daily diary study over 7 days with 17 advanced cancer patients from in‐ and outpatient oncology and psycho‐oncology clinics. Patients reported on the daily frequency of behaviours associated with loss orientation and life engagement using a standardised questionnaire. We characterised each patient's pattern of change with three parameters: the mean level (5‐point‐scale from 0 = never to 4 = always), mean fluctuation between successive days ( MSSD) and the association between changes in loss and life orientation over time. We further explored the relationship between these patterns and free‐text diaries. The daily assessment protocol was acceptable and feasible (46% participation rate, 97% diary completion rate). Individuals differed in mean levels of loss orientation (range: M = 0.1 to 2.7) and life engagement (M = 0.9 to 3.9), the degree of fluctuation ( MSSD = 0.1 to 1.5 and MSSD = 0.3 to 0.9), and the correlations between these changes over time (r = −.83 to +.46), revealing distinctive intraindividual patterns. Further study of individual profiles in loss and life orientation can promote personalised balancing between facing “reality” and sustaining “hope” in end‐of‐life conversations. [ABSTRACT FROM AUTHOR]

We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses. [ABSTRACT FROM AUTHOR]

Cancer-related fatigue ( CRF) is a burdensome symptom for breast cancer ( BC) patients. In this pilot study, we tested several questionnaires as predictors for treatment responsiveness, along with the implementation of a multimodal therapy concept consisting of sleep, psycho-education, eurythmy, painting therapy and standard aerobic training. At the Community Hospital Havelhöhe and the Hannover Medical School, 31 BC patients suffering from CRF could be evaluated in a 10-week intervention study. CRF was assessed by the Cancer Fatigue Scale ( CFS- D). Further questionnaires were the Pittsburgh Sleep Quality Index, the autonomic regulation scale, Self- Regulation Scale ( SRS), the Internal Coherence Scale ( ICS) and the European Organization of Research and Treatment Health-Related Quality of Life Core Questionnaire scale. We estimated the regression coefficients of all scales on CFS- D by simple and multiple linear regression analyses and compared regression slopes and variances between the different questionnaires on CFS- D at the end of treatment. We found a significant impact of SRS and ICS at baseline on CFS- D at the end of the intervention [absolute standardised multiple regression coefficient values ranging from 0.319 ( SRS) to 0.269 ( ICS)] but not for the other questionnaires. In conclusion, this study supports the hypothesis that the SRS or ICS measuring adaptive capacities could be more appropriate as outcome predictors than classical questionnaire measures in complex interventions studies. [ABSTRACT FROM AUTHOR]

This population-based analysis aimed to describe the 12-year trend of primary surgery following the introduction of national guidelines for the management of breast cancer in Germany, thus the implementation of breast-conserving surgery ( BCS) for p T1/2-tumours and the implementation of sentinel lymph node biopsy ( SLNB). Cancer registry data from 72 742 breast cancer patients diagnosed between 1999 and 2010 in four different regions in Germany were used. Descriptive statistics and multivariate logistic regression analysis were conducted. Between 1999 and 2010, rates of BCS for p T1/2-tumours rose from 60.5% to 79.9%, rates of SLNB increased rapidly from 0.4% to 79.0%. Both surgical therapies were already adherent to the respective guidelines, although some regional differences could be observed: in 1999-2003, the chance of BCS was 2.6-fold higher [odds ratio ( OR) 2.6] in the western regions than in the eastern regions, but this difference decreased over time (2004-2007 OR 1.6; 2008-2010 OR 1.2). A similar pattern was observable for SLNB: in 1999-2003, the chance of receiving SLNB was 4.4-fold higher in the western regions, but these rates converged (2004-2007 OR 3.7; 2008-2010 OR 1.5). The further increase of BCS- and SLNB rates after publication of guidelines and the reduction of regional differences may also be attributable to guideline implementation. [ABSTRACT FROM AUTHOR]

The aim of this prospective multi-centre study was to evaluate the level of psychological distress ( PD) and adjustment to disease in patients who underwent radical prostatectomy. Furthermore, the impact of urinary incontinence and erectile dysfunction on PD was assessed. Anxiety, depression and PD were evaluated using the Hospital Anxiety and Depression Scale in 329 prostate cancer patients before surgery as well as 3, 6 and 12 months after surgery. These results were compared with those of a male German general population reference group. Adjustment to disease was assessed using the Perceived Adjustment to Chronic Illness Scale. Patients reported low levels of PD at all points of assessment similar to population norms of age-matched German men. Persistent PD was seen in about 8% of the patients and 20% had PD at least two of the measurement points. Relevant predictors for PD after surgery were urinary symptoms and baseline PD. Adjustment to disease was highest before surgery and had significantly reduced at 3 and 6 months after surgery. In general, men are resilient to the experience of localised prostate cancer and adjust well psychologically after surgery. However, between 8% and 20% of patients could possibly benefit from mental health support. [ABSTRACT FROM AUTHOR]

Although it is widely recognised that people turn to spirituality in times of crises, the interest in exploring the spiritual needs of cancer patients is just beginning to grow. The purpose of this study was to conduct a spiritual needs assessment with cancer patients living in a Northern European metropolitan region in order to (a) examine the relevance and nature of spiritual needs; (b) to clarify the role of demographic and clinical characteristics in spiritual needs; and (c) to identify their associations with dimensions of psychological distress. N = 285 outpatients with mixed cancer sites and of all tumour stages were surveyed cross-sectionally. Instruments included the Spiritual Needs Questionnaire ( SpNQ) and measures of anxiety, distress, hopelessness and meaning-related life attitudes. Almost all patients (94%) reported at least one spiritual need. The needs for Inner Peace and Actively Giving emerged to be of greatest importance. Significant, but weak differences were found for age, gender and being in a partnership. No associations for medical characteristics were observed. Regression analyses revealed anxiety as the strongest predictor for the subscales Existential Needs, Inner Peace and Actively Giving. The results emphasise the relevance of spiritual needs in cancer patients. The call for spiritual assessment and interventions to meet spiritual needs in cancer patients is strengthened. [ABSTRACT FROM AUTHOR]

Although existential needs are highly prevalent in patients with cancer, specific sources of meaning have been little explored. We investigated whether specific sources of meaning predict global meaning and psychological distress. N = 258 patients with breast (45%), lung (39%) and gynaecological cancer (16%) completed a battery of validated questionnaires at T1. Six months later (T2), n = 183 (78%) patients participated again. The primary outcomes -- sources of meaning, global meaning and psychosocial distress -- were measured with the Sources of Meaning Profile-Revised (SOMP-R), Life Attitude Profile-Revised (LAP-R) and modules for depression and anxiety of the Patient Health Questionnaire (PHQ-9, GAD-7). Most important sources of meaning were 'engaging in personal relationships', 'preserving human values and ideals' and 'feeling financially secure'. Stepwise multivariate regression analyses controlling for demographic and medical factors revealed that 'engaging in personal relationships', 'preservation of culture and tradition' and 'interest in social and/or political causes' predicted lower depression. 'Leaving a legacy for the next generation' and 'feeling financially secure' predicted both higher depression and anxiety. The findings highlight the relevance of sources of meaning for the psychological well-being of cancer patients and point towards specific sources of meaning that should be focused in psychosocial interventions. [ABSTRACT FROM AUTHOR]

A better understanding of the role of psychosocial resources and factors associated with participating in patient support groups appears to be important for the development and implementation of cancer survivorship care plans. We therefore investigated the frequency of participation in and satisfaction with patient support groups after completion of a rehabilitation programme and aimed to examine differences in demographic, medical and psychosocial characteristics between group participants and non-participants. We further aimed to identify predictors of participation in patient support groups. A total of 1281 eligible patients (75.5% participation rate) were recruited on average 11 months post diagnosis and assessed at the beginning (t1), at the end (t2) and 12 months after rehabilitation (t3). Study participants completed self-report measures assessing support-group participation and satisfaction, psychosocial distress (anxiety, fear of cancer recurrence, depression), social support, coping, quality of life, pain and treatment-related characteristics. Sixty-seven patients (7.6%) participated in a patient self-help group. Being unemployed, undergoing an increased number of overall treatments, and a higher active emotion-oriented coping style significantly predicted self-help group participation; the predictive power of the multivariate logistic regression model was rather weak ( Nagelkerke's R2 = 0.07). Our data provide evidence that self-help group participation in cancer patients may be largely related to other factors than medical or psychosocial distress. [ABSTRACT FROM AUTHOR]

HINZ A., EINENKEL J., BRIEST S., STOLZENBURG J.-U., PAPSDORF K. & SINGER S. (2012) European Journal of Cancer Care 21, 677-683 Is it useful to calculate sum scores of the quality of life questionnaire EORTC QLQ-C30? The aim of this paper is to test the psychometric properties of sum scores of the quality of life questionnaire EORTC QLQ-C30. A sample of cancer patients ( n= 1529) and a sample of the general population ( n= 1185) were tested with the EORTC QLQ-C30, the Hospital Anxiety and Depression Scale and the Multidimensional Fatigue Inventory. Three sum scores of the EORTC QLQ-C30 are defined: a score concerning functioning, a score concerning symptoms and a total score. Compared with the two-item quality of life scale of the EORTC QLQ-C30, the psychometric quality of the total score and the functioning score is superior with respect to reliability, convergent validity and discriminant validity. Cronbach's alpha of the total score is 0.94 (cancer patients) and 0.95 (general population). The effect size discriminating between patients and controls is d= 0.83 for the total score, compared to only 0.50 obtained with the two-item quality of life scale. The results prove that the calculation of sum scores provides useful information for clinicians who are interested in one generalising score of quality of life. [ABSTRACT FROM AUTHOR]

Background: We performed a comprehensive assessment of the psychometrics of the "Psychosocial Aspects in Hereditary Cancer" (PAHC) questionnaire in French, German and Spanish. Methods: Women consecutively approached in Cancer Genetic Clinics completed the PAHC, distress and satisfaction questionnaires at pre‐testing (T1) and after test result disclosure (T2). In addition to standard psychometric attributes, we assessed the PAHC ability to respond to change (i.e. improvement or deterioration from T1 to T2) in perceived difficulties and computed minimal important differences (MID) in PAHC scores as compared with self‐reported needs for additional counselling. Results: Of 738 eligible counselees, 214 (90%) in France (Paris), 301 (92%) in Germany (Cologne) and 133 (77%) in Spain (Barcelona) completed the PAHC. A six‐factor revised PAHC model yielded acceptable CFA goodness‐of‐fit indexes and good all scales internal consistencies. PAHC scales demonstrated expected conceptual differences with distress and satisfaction with counselling. Different levels of psychosocial difficulties were evidenced between counselees' subgroups and over time (p‐values <.05). MID estimates ranged from 8 to 15 for improvement and 9 to 21 for deterioration. Conclusion: The PAHC French, German and Spanish versions are reliable and valid for evaluating the psychosocial difficulties of women at high BC risk attending genetic clinics. [ABSTRACT FROM AUTHOR]

Objective: Urologic cancer patients often assess their quality of life (QoL) as being relatively good. Response shift (change in internal standards) may be one reason for that effect. The aim of this study was to test such response shift effects. Methods: A sample of 197 male urologic cancer patients was tested while hospitalised (t1) and three months later (t2). The participants had to assess their current health state and the health state of two anchoring vignettes. They also completed the EORTC QLQ‐C30 and PHQ‐4 questionnaires, including a retrospective thentest. The control sample was comprised of members of the general population. Results: The patients rated their general health as being worse than people from the general population did (effect size: d = 0.73, p < 0.001). Moreover, the patients assessed the vignette presenting physical problems as being significantly healthier than people from the general population did (d = 0.42, p < 0.001). Under the retrospective thentest condition, the patients rated their QoL and their mental burden as being significantly worse than in the pre‐test condition. Both methods showed response shift effects. Conclusion: Urologic cancer patients' assessments of their QoL should be handled with caution because of possible shifts in their internal standards of judgement. [ABSTRACT FROM AUTHOR]

Background: The supporting role of caregivers is crucial to cancer patients' care and well‐being. Periods of inpatient hospital treatment are common in the cancer trajectory. There is insufficient systematic knowledge of caregivers' experiences and information needs in hospital context. Aim: Aim of this study is to identify information needs and factors contributing to unmet information needs of caregivers in hospital. Design: A qualitative approach was used to identify major themes and specific types of information needs. Interviews with caregivers were conducted and analysed using a qualitative three‐step process. Setting/participants: The study was conducted in a hospital oncology department. Seventeen caregivers of patients with advanced cancer were interviewed. Results: Caregivers' needs during inpatient treatment vary and are largely unmet. Four major themes emerged from the analysis, revealing information needs of caregivers related to the cancer disease, patient, caregivers themselves and hospital context. The most mentioned issues were appropriate treatment, treatment outcomes and the related consequences for caregivers' life, hospital processes and transition back home. Conclusion: Caregivers have a variety of specific information needs which often remain unmet. Based on our findings, we provide recommendations for integrating caregivers into oncology care, which should be implemented in clinical practice, policy decisions and research. [ABSTRACT FROM AUTHOR]