[Patient concerns and palliative psychology interventions within an inpatient palliative care service]. / Patientenseitige Anliegen und palliativpsychologische Interventionen im Rahmen eines stationären Palliativdienstes.

BACKGROUND: Multi-professional inpatient palliative care services are increasingly complementing palliative care in hospitals alongside palliative care units. The present study aims to investigate the nature and frequency of patient concerns and palliative psychological interventions in the context of palliative psychological work, as well as the perceived quality of outcomes in an inpatient palliative service. METHODS: Palliative psychological interventions for terminally ill patients at the inpatient palliative care service at Leipzig University Hospital were investigated in a prospective follow-up evaluation study. Psychological distress (distress thermometer) as well as the perceived quality of the results of the palliative psychological support (from the therapist`s perspective) were recorded. Patient concerns and psychological conversation topics and interventions were recorded. Descriptive and regression analytic procedures were used. RESULTS: Over a year, 355 patients in the inpatient palliative care service received psychological support, 304 participated in the study (mean age 63.8 years, 55% male, 89% oncological disease). An average of 3 palliative psychological interviews were conducted; 64% of patients reported high psychological distress (M=6.5). The most common patient concerns and topics within the interviews were dealing with emotions (87%), resources (83%), conflicting care and autonomy issues (77%) and hope (76%); significantly less common were spiritual concerns (2%) or the patient's legacy (9%). The most frequently used palliative psychological interventions included: support in illness processing and acceptance (74%) or in emotional-relieving interventions (98%) as in normalisation (75%), active listening (97%) or emotional containment (95%). Regression analysis showed that an oncological (vs. non-oncological) disease, a high number of palliative psychological interviews and interventions, comprehensive information regarding the palliative dimension of the diagnosis as well as undisturbed contact in the initial interview had a positive effect on the perceived outcome quality. CONCLUSION: The study results show that palliative psychologists play an important role in inpatient palliative care teams and should be involved as early as possible in the course of the disease. There is a need for improvement, especially in the palliative psychological care of non-oncological patients.

New progress in an old debate? Applying the DSM-5 criteria to assess traumatic events and stressor-related disorders in cancer survivors.

OBJECTIVE: The rather broad definition of medical trauma within DSM-IV has contributed to long-lasting debates on the applicability of Posttraumatic Stress Disorder (PTSD) in oncological patients and its differentiation from Adjustment Disorder (AjD) which results from non-traumatic critical life events. The DSM-5 criteria have introduced a narrower definition of medical traumatization. However, studies on updated prevalence rates in cancer patients are missing. METHODS: Within a cross-sectional study, we assessed hematological cancer survivors using the Structured Clinical Interview for DSM-5. We investigated (i) the frequency and type of cancer-related stressors, (ii) the proportion of stressors qualifying as traumatic according to DSM-5 (i.e., an event of sudden and catastrophic character) and (iii) the prevalence of PTSD, AjD and cancer-related PTSD according to DSM-5. RESULTS: 291 patients participated (response rate: 58%). Mean age was 54 years, 60% were male. 168 patients (59%) reported cancer-related stressors, with the most frequent being cancer diagnosis disclosure (n = 58, 27%). Eight percent of reported stressors qualified as traumatic events according to DSM-5. Five (1.8%), 15 (5.3%) and 20 (7.0%) cancer survivors met DSM-5 criteria for current PTSD, lifetime PTSD and AjD, respectively. Among all PTSD cases, three were cancer-related (1.1%). In addition, seven patients (2.5%) met all symptoms for cancer-related PTSD, but not the DSM-5 criterion for medical trauma. Considering receiving the cancer diagnosis as traumatic event, which is debatable according to DSM-5, 38% of stressors qualified as traumatic and six patients (2.1%) met criteria for cancer-related PTSD. CONCLUSIONS: DSM-5 criteria enable a clear identification of traumatic events in the context of cancer. This change may inform discussions on the appropriateness of PTSD in cancer patients and facilitates its differentiation from AjD. Larger studies need to validate our findings.

Symptoms of posttraumatic stress disorder and adjustment disorder in hematological cancer patients with different treatment regimes.

BACKGROUND: Symptoms of posttraumatic stress disorder (PTSD) and adjustment disorder (AjD) are common in hematological cancer patients as they face severe stressors during their serious disease and often intensive treatment, such as stem cell transplantation (SCT). Aims of the present study were to provide frequency and risk factors for PTSD and AjD based on updated diagnostic criteria that are lacking to date. MATERIAL AND METHODS: In a cross-sectional study, hematological cancer patients were assessed for stressor-related symptoms via validated self-report questionnaires based on updated criteria for PTSD (PCL-5) and AjD (ADMN-20). Frequency and symptom severity were estimated among the total sample and SCT subgroups (allogeneic, autologous, no SCT). SCT subgroups were compared using Chi-squared-tests and ANOVAs. Linear regression models investigated sociodemographic and medical factors associated with symptomatology. RESULTS: In total, 291 patients were included (response rate: 58%). 26 (9.3%), 66 (23.7%) and 40 (14.2%) patients met criteria for cancer-related PTSD, subthreshold PTSD and AjD, respectively. Symptom severity and frequency of criteria-based PTSD and AjD did not differ between SCT subgroups (all p > 0.05). Factors associated with elevated symptomatology were younger age (PTSD: p < 0.001; AjD: p = 0.02), physical comorbidity (PTSD: p < 0.001; AjD: p < 0.001) and active disease (PTSD: p = 0.12; AjD: p = 0.03). CONCLUSION: Based on new criteria, a considerable part of hematological cancer patients reports PTSD and AjD symptoms. Younger patients and patients with physical symptom burden might be particularly at risk and need to be monitored closely to enable effective treatment at an early stage.

[Communicating about Parental Cancer with Minor Children: Necessity, Burden, and Issues from a Parent's Perspective]. / Kommunikation über die elterliche Krebserkrankung mit minderjährigen Kindern: Notwendigkeit, Belastung und Themen aus Elternsicht.

BACKGROUND: In addition to coping with their own stresses, parents of minor children with cancer face the difficult task of communicating the diagnosis and its effects to their children. The aim of this study is to examine parents' perceptions of conversations with their children and to identify key topics for psychosocial support. METHODS: Using a questionnaire, N=82 cancer patients with N=162 minor children were asked about their experiences when talking to their children about the disease. RESULTS: Communication about the disease was perceived as necessary by most parents. This was especially the case for older children. With 143 out of 162 children (88.3%), the conversation was held. Of the 82 parents interviewed, 16.5% felt no burden as a result of the talks, 15.2% reported a very high burden. The feeling of not being able to protect the children was perceived as particularly stressful. DISCUSSION: Most parents consider communication with the children to be important and seek it. However, many find this difficult, e. g. because they actually want to protect their children. Additional stress can be caused by questions from the children to which the parents cannot give an answer. CONCLUSION: Psychosocial support can be helpful here. Experiences discussed by parents can help other parents in similar situations.

[Impact of Oncological Treatment on Perceived Stigmatization - A Register-Based Study]. / Der Zusammenhang zwischen onkologischen Therapien und wahrgenommener Stigmatisierung bei Krebspatienten mit Brust-, Darm-, Lungen-und Prostatakrebs ­ Ergebnisse einer registerbasierten Studie.

BACKGROUND: Studies on stigmatization of cancer patients show a moderate or high relevance of perceived stigmatization. To date, there are no studies with explicit focus on stigma in relation to oncological therapy. We investigated the role of oncological therapy on perceived stigma in a large sample. METHODS: Quantitative data from 770 patients (47,4% women; 88%≥50 years) with breast, colorectal, lung, or prostate cancer were analyzed as part of a registry-based bicentric study. Stigma was assessed with the German version of the SIS-D; the validated instrument includes four subscales in addition to a total score. Data were analyzed using the t-test and multiple regression with various sociodemographic and medical predictors. RESULTS: Of the 770 cancer patients, 367 (47,7%) received chemotherapy, possibly in combination with other therapy (surgery, radiotherapy). All stigma scales showed significant mean differences (effect sizes up to d=0,49) with higher scores for patients receiving chemotherapy. The multiple regression analyses of the respective SIS-scales demonstrate a significant influence of the variables age (ß≤- 0,266) and depressivity (ß≤0,627) on perceived stigma in all five models, and (in four models) a significant influence of the variable chemotherapy (ß≤0,140). Radiotherapy shows only a weak influence in all models and surgery has no relevance. The explained variance ranges from R2=27 to 46,5%. DISCUSSION AND CONCLUSION: The findings support the assumption of an association of oncological therapy, especially chemotherapy, on the perceived stigmatization of cancer patients. Relevant predictors are depression and younger (<50) age. These (vulnerable) groups should therefore receive special attention and psycho-oncological care in clinical practice. Further research on the course and mechanisms of therapy-related stigmatization is also necessary.

Dyadic coping and social support: Various types of support in hematooncological patients and their spouses-Associations with psychological distress.

OBJECTIVE: Patients and spouses use various support strategies to deal with cancer and its associated burden. Support can be perceived within the dyad [perceived dyadic coping (PDC)] or from others [perceived social support (PSS)]. The present study investigates the association of PDC and PSS with depression and anxiety symptoms experienced by hematooncological dyads. METHODS: A total of 330 hematooncological dyads participated in the study. Dyadic Coping Inventory (DCI) including perceived stress communication and four PDC strategies (supportive, negative, delegated, common), ENRICHED Social Support Instrument (ESSI) and Patient Health Questionnaire-4 (PHQ-4) are used for assessment. To take nonindependence of patient's and spouse's variables into account, data are analyzed with the Actor-partner-interdependence model (APIM). RESULTS: Hematological cancer patients and their spouses reported a similar level of depression and anxiety symptoms. Perceived negative dyadic coping (DC) was adversely related with both patient's and spouse's outcomes (all p < 0.01) and perceived positive DC was adversely related with depression symptoms in both and anxiety symptoms in spouses (all p < 0.05). More PSS was associated with less depression and anxiety symptoms in both (all p < 0.05), and spouse's PSS (b = -0.04, p < 0.05) was significantly associated with patient's depression symptoms. CONCLUSIONS: This study highlights the association between perceived negative DC, perceived positive DC and PSS with depression and anxiety symptoms. Focus should be on enhancement of PSS especially in spouses, as they experience a comparable amount of psychosocial distress and have considerable impact on the patient's wellbeing.

[Smoking Behaviour after Partial Resection of the Larynx: The Role of Causal Attribution]. / Rauchverhalten von Krebspatienten nach Kehlkopfteilresektion: Welche Bedeutung hat die Kausalattribution?

OBJECTIVE: The aim of our study was to examine how different causal attributions in patients with laryngeal cancer are associated with smoking behaviours (smoking cessation rates and amount of cigarettes per day) after partial resection of the larynx. METHODS: Multicentre prospective cohort study including 4 interviews: between diagnosis and partial resection of larynx (t1), one week (t2), 3 months (t3) and 12 months (t4) after surgery. Presented in this study are t1 and t4. A total of 134 patients (mean age 62 years, 93% male) were interviewed at t1 and t4 between 2007 and 2013. Key items were causal attribution as well as previous and current smoking behaviour. Patients were grouped according to the subjectively stated causal attribution. Results were analysed descriptively and group as well as mean value comparisons were conducted. RESULTS: Smoking was the most commonly stated causal attribution (43.3%). The quantity of cigarettes decreased significantly by about 6 cigarettes from 17 (range 3-40) to 11 (range 2-30) cigarettes per day in this group (p=0.001). 25% of patients did not recognize a reason for their illness. In longitudinal analyses of all groups of different causal attributions, there was a non-significant decrease in the percentage of smokers. CONCLUSION: We show that causal attribution does not affect smoking cessation rate significantly in a positive way. But active smokers after PRL reduce their quantity of cigarettes per day significantly. This impact is more noticeable in patients who were able to define a causal attribution. Psycho-oncological care, information services and smoking cessation programs could contribute to this effect by making the causal attribution a subject of discussion.

Short and long-term barriers and facilitators of skin self-examination among individuals diagnosed with melanoma.

BACKGROUND: Melanoma can be lethal if not detected early and treated. Early detection can be facilitated via skin self-examination (SSE) and as such, SSE is part of melanoma follow-up care for individuals with a prior history, who face a life-long risk of reoccurrence. The objective of the current study was to identify short- and long-term predictors of SSE among melanoma survivors to inform future prevention interventions in high-risk groups. METHOD: This is an observational study with longitudinal assessments conducted with adult melanoma patients in active follow-up care. PRIMARY OUTCOME MEASURES: Behavioral outcomes, comprehensive SSE (checking up to 5 body areas in the last 3 months) and optimal SSE (checking the entire body at least monthly in the last 3 months) were assessed at 3, 12, and 24 months post a dermatological educational session on skin cancer prevention. T tests and chi square analyses were used to examine changes in outcomes from 3 to 12 and 24 months. Linear and logistic regression models were used to examine the association between predictors and the primary outcomes. RESULTS: Comprehensive SSE did not decrease significantly from 3 (M = 2.7, SD = 1.1) to 12 (M = 2.6, SD = 1.2) and 24 months (M = 2.4, SD = 1.2) post the education session, with the stronger predictor at all timepoints being intentions to perform SSE. Optimal SSE was higher at 3 months (59%) compared to 12 (46%) and 24 months (34%), with key predictors including self-efficacy and intentions to perform SSE and male sex at 3 months post; self-efficacy and reliance on medical advice at 12 months; and (lower) education and self-efficacy at 24 months. CONCLUSIONS: The key findings of this study are that 1) survivors maintain SSE behaviour over time, but rates of SSE performed in agreement with medical recommendations are higher immediately post standard dermatological education (i.e. usual care) and decrease somewhat over a 24-month period; and 2) the strongest psycho-social predictors of SSE are intentions and self-efficacy to perform the behavior, which are highly modifiable, for example via motivational interviewing and goal setting health interventions.

Fatigue in cancer patients: comparison with the general population and prognostic factors.

PURPOSE: The aims of this examination were to compare cancer patients' fatigue burden with that of the general population, to identify clinical factors that are associated with fatigue, and to test psychometric properties of the fatigue questionnaire MFI-20 including the short-form MFI-10. METHODS: A sample of 1818 German cancer patients was tested with the MFI-20. RESULTS: The study confirmed that the cancer patients demonstrate a high level of burden from fatigue. The effect size for the comparison between the cancer patients and a sample of the general population (n = 1993) was d = 0.58 based on MFI-20 total scores. In the cancer patients' sample, females reported slightly higher levels of fatigue than males did (p < 0.05). There was no significant effect of age on fatigue. Advanced tumor stage, the presence of metastases, and a "poorer" Eastern Cooperative Oncology Group (ECOG) performance status were significantly associated with fatigue. The results of the confirmatory factor analyses (CFAs) only partly confirmed the factorial structure of the MFI-20. CONCLUSION: Despite the insufficient CFA indices, we believe that the scale structure of the MFI-20 should not be changed and that calculating a total fatigue score is justifiable. For those seeking a shorter questionnaire, the MFI-10, which only contains those 10 items which positively indicate fatigue, is a good alternative.

[Why Me? - Causal Attributions and their Relation to Socio-Economic Status and Stigmatization in Breast, Colon, Prostate and Lung Cancer Patients]. / Warum gerade ich? ­ Subjektive Krankheitsursachen und Zusammenhänge zu sozialen Faktoren und wahrgenommener Stigmatisierung bei Brust-, Prostata-, Darm- und Lungenkrebspatienten.

BACKGROUND: Causal attributions can result in self-incrimination and psychosocial burden. Therefore, the present study assessed assumptions about subjective causes of cancer and examines their relationships with social factors and perceived stigmatization. METHODS: In a bicentric study, 858 patients with breast, colon, prostate or lung cancer were given standardized questionnaires. Of these, n=815 were included in the analyses. Causal attributions were assessed using a set of 17 items including main causes of cancer. Stigmatization was assessed with the Social Impact Scale (SIS-D). The data are evaluated uni-and multivariable. RESULTS: The mean age is 60 years, 54% are male. The majority of the patients (95%) state multiple causes of their disease. Environment is considered to be the most important influencing factor (M=3.0) by all cancer sites. The lowest influence is attributed to guilt/god's punishment (M=1.1). Causal attributions which are due to the lifestyle factors showed no higher correlations with stigmatizing attitudes than external attributions (r=0.07-0.38). Psychosocial factors (Beta=- 0.051 bis -0.086), smoking (Beta=- 0.087) and guilt/god's punishment (Beta=- 0.023) have been stated lowest in patients with high income. The lower the education of the patient the higher rated is the influence of contagion (Beta=- 0.019). CONCLUSION: Actual cancer risks are only partially taken into account as disease causes (e. g. nutrition), while others are underestimated (e. g. alcohol). Future cancer education interventions should focus on low-educated patients.

[Supportive Care and Information Needs of Cancer Survivors: A Comparison of Two Cohorts of Longterm Cancers Survivors 5 and 10 Years after Primary Cancer Diagnosis]. / Bedürfnisse nach Information und Unterstützung bei Krebspatienten: ein Kohortenvergleich von Langzeitüberlebenden fünf und zehn Jahre nach einer Krebsdiagnose.

OBJECTIVES: Addressing information and supportive care needs could enhance cancer survivors' ability to cope with the long-term and/or late effects of their disease. The study examines how long-term cancer survivors evaluate information received during the course of cancer and aims to identify supportive care needs. METHODS: The data were collected in a cross-sectional cancer registry cohort study including 1002 patients (participation rate 53%, five years post diagnosis n=660 (65.9%), 10 years post diagnosis n=342 (34.1%), mean age 66.7 years, male 52.9%, prostate cancer 25.5%). The survey instruments used included the SCNS-SF34-G, the PHQ-9, GAD-7, the Distress-Thermometer (DT) and a questionnaire measuring comorbidities. Descriptive and inference statistics were applied. RESULTS: Cancer Survivors perceived information on treatment decision-making as most helpful, whereas information about support offers was perceived as least helpful. One in 5 patients (19.6%) expressed a desire for further information. The majority of patients (81.3%) indicated at least one specific unmet supportive care need, on average 11 (SD=7.14) unmet supportive care needs. Most frequent supportive care needs are related to fear of cancer progression or recurrence, physical comorbidities and the wish for one member of the professional health care team with whom they can talk to continuously about medical issues across the treatment period. Higher physical comorbidity and distress are associated with an increased likelihood of further supportive care needs (p<0.001). CONCLUSION: There is a need for survivorship care models that take into account medical aspects and psychosocial needs through a multidisciplinary approach.

Trauma- and stressor-related disorders among hematological cancer patients with and without stem cell transplantation: protocol of an interview-based study according to updated diagnostic criteria.

BACKGROUND: Trauma- and stressor-related disorders pose an important threat for patients with medical conditions by negatively affecting the outcomes of the underlying somatic disease. Nevertheless, research on distress in the course of hematological cancer is sparse to date. For this patient group, however, treatment is often more toxic and invasive than for other cancer populations. A subgroup of these patients is treated with stem cell transplantation (SCT) which is associated with many stressors including spatial isolation or fear of life-threatening complications. Existing results are inconsistent and primarily based on self-report questionnaires and small samples. Moreover, diagnostic criteria of trauma- and stressor-related disorders have recently been updated. METHODS: This German cross-sectional study will recruit at total of 600 hematological cancer patients, of which 300 will have undergone either autologous or allogeneic SCT. Participants will be assessed for trauma- and stressor-related disorders (adjustment disorder and posttraumatic stress disorder) using a structured clinical interview (SCID-5) based on updated diagnostic criteria. Qualitative investigation of the reported stressors will be used for differential diagnostic investigations and to examine which stressors are experienced as most distressing. Additionally, severity of distress (i.e., general distress as well as anxious, depressive and stressor-related symptomatology) will be assessed by validated questionnaires. We will (i) provide the prevalence of trauma- and stressor-related disorders, (ii) investigate medical and sociodemographic risk factors and (iii) compare the levels of distress within the patient group (SCT vs. non-SCT) and between patients and age- and gender-matched reference groups from the German general population. DISCUSSION: This study will assess the prevalence of stressor-related disorders and the level of distress among hematological cancer patients across different treatment settings. Identification of medical and sociodemographic risk factors will help to closely monitor patients with a high risk of distress and to deliver psycho-oncological treatment as soon as possible. Comparisons between patients and norm values will be used to identify the need for psycho-oncological treatment in subgroups of hematological patients and thus help to further develop and implement tailored psycho-oncological interventions.

INPART - a psycho-oncological intervention for partners of patients with haemato-oncological disease - study protocol.

BACKGROUND: Suffering from cancer confronts both the patient and their partner with a number of psychosocial challenges in various aspects of their life. These challenges may differentially impact on quality of life, coping ability and compliance to treatment. This especially holds true for haemato-oncological diseases. To date, psychological interventions have predominantly been developed for oncological patients however specific interventions for partners of haemato-oncological patients are rare. In this study we aim to conduct a psycho-oncological group-intervention for partners of patients with haemato-oncological diseases. The aim of the intervention is to significantly reduce symptoms of depression and anxiety in the partners and the patient, as well as enhancing dyadic coping. METHODS: The design of the INPART-study is an unblinded, randomised controlled trial with 2 treatment conditions (experimental and control) and assessments at baseline, 3 and 6 months. It will be conducted at three study centres: the university medical centre's in Leipzig, Hannover and Ulm. The outcome criteria will be a reduction in depressive and anxiety symptoms as well as an improvement of dyadic coping. DISCUSSION: This trial shall provide information regarding the efficiency of a psycho-oncological intervention for partners of patients with haemato-oncological diseases and give references to the possible outcome in terms of dyadic coping and the reduction of mental strain. The study was supported by a grant from the German José Carreras Leukaemia Foundation. TRIAL REGISTRATION: ISRCTN16085028 ; 20/03/2019.

[Selected Quality Characteristics Of Out-Patient Psychosocial Cancer Counseling Centers In Germany: A Nationwide Analysis]. / Ausgewählte Merkmale der Struktur- und Prozessqualität der psychosozialen Versorgung in ambulanten psychosozialen Krebsberatungsstellen in Deutschland. Eine Bestandsaufnahme.

OBJECTIVES: Quality assurance has become increasingly relevant in the field of outpatient psychosocial cancer counseling. At the same time, no studies are currently available that analyze outpatient psychosocial cancer counseling centers in Germany with respect to standards of service quality. Therefore, this study aimed to determine whether these centers meet selected quality criteria of outpatient psychosocial cancer counseling. METHODS: Based on quality standards of outpatient psychosocial cancer counseling previously developed by us in a Delphi study, we surveyed 106 out of 151 German psychosocial outpatient cancer counseling centers registered in a publicly accessible data base of Germany's cancer information service in Heidelberg with respect to the selected quality characteristics. Data analysis used descriptive statistical techniques. RESULTS: The centers of the sample differ in how many of them fulfill the quality standards selected for analysis here. More than 90% provide the services described by the standards as required. In contrast, in the personnel domain, there appears to be room for improvement with respect to the amount of service hours available for psychologists and the number of counselors with advanced training in psycho-oncology. Also, external supervision and case conferences turn out to be quality characteristics with room for improvement in the domain of quality assurance as do distress screening in the domain of diagnostics and using systematic documentation. CONCLUSION: Referring to recent standards of quality of outpatient psychosocial cancer counseling allowed us to delineate strength and weaknesses that may serve as starting points for quality improvement in the centers providing psychosocial cancer counseling. However, further research is necessary to arrive at a more comprehensive picture of the degree to which outpatient psychosocial cancer counseling centers in Germany comply with current standards of service quality.

[Outpatient Psychosocial Cancer Care at a University Medical Center - Study Results Concerning Patient Characteristics and Care Needs]. / Psychosoziale Versorgung von Krebspatienten in einer Krebsberatungsstelle an einem Universitätsklinikum.

BACKGROUND: Psychosocial care for cancer patients has gained importance in recent years and psycho-oncological counselling centers (POCC's) offer a wide range of services in this area. We investigated the scope and content of a POCC at a university medical center. METHODS: The presented data were collected at the POCC at University Medical Center Leipzig in 2014. In total, 469 cancer patients participated (mean age 60 years, 67% female, 36% breast cancer). Psychosocial distress and psychopathology were assessed with the PHQ-9, GAD-7 and the NCCN Distress Thermometer. Descriptive statistics were analyzed. RESULTS: 1 in 4 patients (24%) reported at least moderate levels of depressive symptoms. Patients with hematological malignancies and head and neck tumors showed stronger depressive symptoms. 15% of patients suffered from elevated levels of anxiety. The average number of reported problems on the Distress Thermometer and Problem List was 14 out of 39. Physical and psychosocial problems were most prevalent (e. g. fatigue, problems getting around, anxiety). Supportive care needs were less common than reported problems. CONCLUSIONS: We found that a close network of POCS, oncological inpatient and outpatient care can help direct patients toward psychosocial care at an early stage. Psychosocial screening enables psycho-oncologists to identify problem areas and offer tailored counselling services.

[Development of an evaluation system for online self-help groups by using the example of German-speaking cancer forums]. / Erstellung eines Bewertungssystems für virtuelle Selbsthilfegruppen am Beispiel deutschsprachiger Krebsforen.

Development of an evaluation system for online self-help groups by using the example of German-speaking cancer forums Objectives: This paper pursues the question how the quality of forums can be evaluated. Therefor a grading system was designed and 23 German-speaking cancer forums were evaluated by content and formal criteria Methods: Using a keyword-based internet search, 23 forums were identified. Data was gathered about: number of themes, posts and members, structure, key subjects and type of financing. Furthermore, an evaluation system was developed, with which the forums where assessed. Results: The forums were divided in forums with (n = 10) and without (n = 9) focus on a type of cancer. Four are health portals with forum-function. The quality of online cancer forums is heterogeneous, the evaluation resulted an average quality index of 2.7 for the total cancer forums Conclusion: A good information editing, moderation, data protection and transparency are important quality criteria. The evaluation of forums may help the patients, to autonomously value the quality of the presented information.

Body image mediates the effect of cancer-related stigmatization on depression: A new target for intervention.

OBJECTIVE: Because cancer-related stigmatization is prevalent but difficult to change, research on its impact on psychological burden and respective intervening variables is needed. Therefore, we investigated the effect of stigmatization on depressive symptomatology and whether body image mediates this relationship. METHODS: This bicentric study assessed patients of 4 major tumor entities. We measured stigmatization (SIS-D), depressive symptomatology (PHQ-9), and body image (FKB-20). Applying multiple mediator analyses, we calculated the total effect of stigmatization on depressive symptomatology and the indirect effects exerted via the 2 body image scales rejecting body evaluation and vital body dynamics. RESULTS: Among the 858 cancer patients recruited (breast: n = 297; prostate: n = 268; colorectal: n = 168; lung: n = 125), stigmatization showed total effects on depressive symptomatology across all stigma dimensions (all ptotal sample  < .001). Except for lung cancer patients, this result was replicated for each cancer group. Body image as a whole was shown to mediate the effect across all samples (γtotal sample  = .04, 95%-CI: 0.03-0.06). Among the total sample and prostate cancer patients, the mediating effect of rejecting body evaluation was significantly larger than the effect of vital body dynamics (dtotal sample  = .02, 95%-CI: 0.01-0.04). CONCLUSIONS: Perceived stigmatization is an important and generalizable risk factor for depressive symptomatology among cancer patients. Apart from interventions addressing stigmatization, improving body image could additionally help to reduce the psychological burden in stigmatized patients.

Validation of the German version of the late adolescence and young adulthood survivorship-related quality of life measure (LAYA-SRQL).

BACKGROUND: Cancer has adverse effects on patient's quality of life. As such, measuring quality of life (QoL) has become an integral part of psycho-oncological health care. Because adolescent and young adult patients have different needs in contrast to children and older cancer patients, instruments for adequately measuring QoL of cancer survivors in this age range are essential. As there is not a corresponding instrument in Germany, we aimed to validate the German version of the Late Adolescence and Young Adulthood Survivorship-Related Quality of Life Measure (LAYA-SRQL), a 30-item questionnaire covering 10 dimensions related to QoL. METHODS: The LAYA-SRQL was translated into German following state-of-the-art criteria. We enrolled 234 adolescent and young adult (AYA) cancer patients with different tumour entities aged between 16 and 39 years old. Factorial structure was tested using confirmatory factor analysis. Internal consistency was determined by Cronbach's α. The Short Form Survey quality of life questionnaire (SF-12v2) was used to examine convergent validity. RESULTS: The 10-factor structure of the LAYA-SRQL was confirmed in the German sample, and the model shows high values of fit indicators: χ2 = 723.32 (df = 360, p < 0.001), CFI = 0.92, TLI = 0.90, SRMR = 0.074, RMSEA = 0.066). Subscales showed acceptable to excellent internal consistencies with Cronbach's α > 0.70 and total Cronbach's α of 0.93. Convergent validity was demonstrated by high positive correlations between the LAYA-SRQL and the physical (r = 0.45) and mental component (r = 0.65) of the SF-12v2. CONCLUSIONS: The German version of the LAYA-SRQL showed good psychometric properties. The instrument proved to be a highly reliable and valid instrument that can be recommended for use in the follow-up care of AYAs and for clinical research.

[Dyadic Coping of Patients with Haemato-Oncological Diseases and their Partners: Discrepancy Indexes and Association with Social Support and Psychological Distress]. / Dyadisches Coping von hämatoonkologischen Patienten und ihren Partnern: Übereinstimmungsmaße und Zusammenhänge mit sozialer Unterstützung und psychischer Belastung.

BACKGROUND: Cancer is often associated with negative psychosocial consequences not only for patients but also for their partners. These consequences are also influenced by the applied coping strategies. OBJECTIVE: The study examines the influence of Dyadic Coping (DC) on social support and psychological distress (symptoms of depression and anxiety) in haemato-oncological patients and their partners. Of particular interest is the significance of dyadic accordance (conformity) of the assessment of DC ("discrepancy indexes"). METHODS: The study investigates 330 couples (haemato-oncological patients and their partners, average age patient 57.0 years, 63.3 percent male, 25.8 percent acute leukemia). In addition to Dyadic Coping Inventory (DCI), standardized instruments are used. Research data is being analyzed with t-tests, partial correlation and regression. RESULTS: Patients and partners use similar dyadic coping strategies, whereby partners assess coping behaviors of patients more accurately than vice versa. Regarding social support, the DC total score plays a more decisive role than discrepancy indexes, in particular with patients (R2=20.4%). Conversely, discrepancy indexes explain a large part of the patients' variance (R2=10.2%); regarding psychological stress, the DC total score shows no effects in this model. DISCUSSION: The results demonstrate the relevance of the DC discrepancy indexes as a measure for interpersonal accordance for psychosocial outcomes, especially for psychological distress. Further application-related research is necessary to generate reliable statements about these associations.

Psychological distress of cancer patients with children under 18 years and their partners-a longitudinal study of family relationships using dyadic data analysis.

PURPOSE: With increasing age at pregnancy, the likelihood of cancer affecting a family with children under 18 is rising and the issue of parents with cancer is gaining importance. Here, we examined the level of anxiety and depression, social support, and partnership satisfaction of cancer patients with children under 18 years and their partners as well as the dyadic patient-partner relationship concerning psychological distress and predictor variables. METHODS: We used a longitudinal survey, recruiting patients with children under legal age and their partners (t1 = post therapy, t2 = 6 months after t1, t3 = 12 months after t1). Patients and partners completed the Hospital Anxiety and Depression Scale (HADS), the Oslo 3-item Social Support Scale (OSS-3), and the Abbreviated Dyadic Adjustment Scale (ADAS). We surveyed 161 cancer patients and 115 partners by mail (t1). Anxiety and depression were compared to German normative data. Dyadic relationships of three variables (social support, partnership satisfaction, and employment) and the psychological distress of 81 patient-partner dyads were analyzed with a structural equation model to estimate the actor-partner interdependence model. RESULTS: After cancer therapy, 28.3 % of the patients and 46.2 % of their partners had moderate to high levels of anxiety and 17.9 % and 23.1 % had moderate to high levels of depression, respectively. Partners' levels of anxiety (p = 0.002) and depression (p = 0.018) had decreased significantly over the 1-year period post therapy. We found no changes in patients' anxiety (p = 0.444) and depression (p = 0.636) over time. Anxiety and depression did not differ on pair level (p = 0.120-0.928). The level of anxiety in patients and partners was significantly higher than that in the general population (p < 0.001-0.006). The analyses of the dyadic relationships showed a positive effect of social support on psychological distress of the patient (beta = -0.206, p < 0.2). Social support (beta = -0.448, p < 0.001), employment (beta = -0.509, p < 0.01), and satisfaction with partnership (beta = -0.448, p < 0.001) showed a positive impact on psychological well-being of the partner. CONCLUSIONS: A cancer experience within a family is a large burden for both patients and partners, highlighting the high incidence of anxiety. The results indicate that couples coping with cancer tend to react as an emotional system rather than as individuals. Patients' reintegration in employment is as important as encouraging partners in their working activities. The findings underline the importance of continuing social support for patients and their partners.