A web-based knowledge database to provide evidence-based information to cancer patients: Utilization within the PIKKO study.

PURPOSE: Cancer is associated with an urgent need for understandable and reliable information, which is often not satisfied by information available online. Therefore, as part of the PIKKO project, a web-based knowledge database (WDB) was introduced to provide cancer patients with quality-assured, evidence-based information. This paper aims to provide insights into the usage (Who? How? What?) and the effects regarding health literacy of the WDB. METHODS: A patient survey and automatically generated logfile data were evaluated. Two user groups, patients and patient navigators (PNs), were compared. RESULTS: The 13 PNs were responsible for 1/3 of all accesses over the entire duration of the project. The 413 patients used WDB twice on average and spent an average of 12 min per session online (PNs: 9 min per session, more frequently). The top 3 topics of interest were 'therapy', 'nutrition' and 'carcinogenesis' for the patients, and 'therapy', 'naturopathy' and 'legal regulations/support' for the PNs. Of the patients surveyed, 69% said that WDB was helpful in making informed decisions, 76% found the information they wanted and 90% thought WDB was an appropriate way to provide information. CONCLUSION: Our WDB provided important information about cancer and its treatment on a digital way both, to patients and PNs. In routine cancer care, the WDB can improve health literacy and informed decision-making. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21 Feb 2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.

Exploring the Relationship between (De-)Centralized Health Care Delivery, Client-Centeredness, and Health Outcomes-Results of a Retrospective, Single-Center Study of Transgender People Undergoing Vaginoplasty.

Introduction: Transgender health care interventions (e.g., gender-affirming surgery) support transgender and gender-diverse people to transition to their gender and are delivered in both centralized (by one interdisciplinary institution) and decentralized settings (by different institutions spread over several locations). In this exploratory study, we investigated the relationship between centralized and decentralized delivery of transgender health care, client-centeredness, and psychosocial outcomes. Methods: A retrospective analysis of 45 clients undergoing vaginoplasty at one medical center was conducted. Mann-Whitney U tests assessed differences regarding five dimensions of client-centeredness and psychosocial outcomes between the health care delivery groups. To address shortcomings regarding the small sample size, we applied a rigorous statistical approach (e.g., Bonferroni correction) to ensure that we only identified predictors that were actually related to the outcomes. Results: All aspects of client-centered care were scored average or high. Decentralized delivery of care was more client-centered in terms of involvement in care/shared decision-making and empowerment. However, participants from decentralized health care delivery settings scored lower on psychosocial health (p = 0.038-0.005). Conclusions: The factor of (de-)centralized health care delivery appears to have a significant impact on the provision of transgender health care and should be investigated by future research.

The impact of the COVID-19 pandemic restrictions on the health care utilization of cancer patients.

BACKGROUND: COVID-19 has impacted both society and medical care. While Germany entered the first lockdown in spring 2020, the PIKKO study (Patient information, communication and competence empowerment in oncology) was still active. The intervention modules, patient navigator (PN), services of the Saarland Cancer Society (SCS), psycho-social counseling and different courses, and online knowledge database (ODB) continued to be offered, but in an adapted form. It was the aim of this supplementary survey to identify the restrictions and burdens of the pandemic containment strategies on the PIKKO patients and thus on the PIKKO study itself. Furthermore, this work shows how the PIKKO modules were used during the lockdown. METHODS: All patients in the PIKKO intervention group (IG) were invited to complete a questionnaire, n = 503. Furthermore, utilization of the SCS and log files of the ODB were analyzed. For socio-demographic data and contacts with the PN, data from the regular PIKKO surveys were used. In addition to descriptive statistics, chi²-tests, F-tests and linear regression analyses were performed. RESULTS: 356 patients participated in this supplemental survey. 37.6% reported restrictions. "Restrictions on accompanying persons", "ban on visits to the wards" and "protective mouth-nose-mask" were reported as the greatest burdens. 39.0% expressed fears that the restrictions would have an impact on the course of their disease. Linear regression analyses showed differences in feelings of burden among age groups (more among < 60-year-olds), gender (more among women), children in the household (more with children), and preexisting financial stress (more with financial worries). In April 2020, there was more patient contact with PNs by phone, more SCS psycho-social counseling by phone, adapted SCS course offering, but with significantly fewer participants, and high activity on the ODB. CONCLUSION: Cancer patients in the IG reported restrictions from the pandemic containment strategies and feared an impact on their recovery. However, whether a burden is perceived as heavy depends more on gender, age, or pre-existing burdens than on whether the lockdown affects PIKKO or not. The utilization of counseling, courses or the ODB despite lockdown shows the need for such services, especially in times of crisis. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21 Feb 2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703 .

Patient information, communication and competence empowerment in oncology: Results and learnings from the PIKKO study.

PURPOSE: Many concepts for accompanying and supporting cancer patients exist and have been studied over time. One of them was PIKKO (a German acronym for "Patient information, communication and competence empowerment in oncology"), which combined a patient navigator, socio-legal and psychological counseling (with psychooncologists), courses dealing with various supportive aspects, and a knowledge database with validated and easy-to-understand disease-related information. The aim was to increase the patients' health-related quality of life (HRQoL), self-efficacy as well as health literacy and to reduce psychological complaints such as depression and anxiety. METHODS: To this purpose, an intervention group was given full access to the modules in addition to treatment as usual, while a control group received only treatment as usual. Over twelve months, each group was surveyed up to five times. Measurements were taken using the SF12, PHQ-9, GAD, GSE, and HLS-EU-Q47. RESULTS: No significant differences were found in scores on the mentioned metrics. However, each module was used many times and rated positively by the patients. Further analyses showed a tendency higher score in health literacy with higher intensity of use of the database and higher score in mental HRQoL with higher intensity of use of counseling. CONCLUSION: The study was affected by several limitations. A lack of randomization, difficulties in recruiting the control group, a heterogeneous sample, and the COVID-19 lockdown influenced the results. Nevertheless, the results show that the PIKKO support was appreciated by the patients and the lack of measurable effects was rather due to the mentioned limitations than to the PIKKO intervention. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21.02.2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.

[Psychometric Properties of the Qualiskope-A for Measuring Patient Satisfaction with Outpatient Medical Treatment: Use in Oncology and Transferability to Inpatient Care]. / Psychometrische Eigenschaften des Qualiskope-A zur Messung der Patientenzufriedenheit mit der ambulant-ärztlichen Behandlung: Einsatz in der Onkologie und Übertragbarkeit auf die stationäre Versorgung.

AIM: The Qualiskope-A is a German-language PREM (Patient Reported Experience Measure) which, with the help of 27 items allocated to four scales, enables measurement of patient satisfaction with outpatient medical treatment along four dimensions of patient satisfaction. This study examined whether the questionnaire delivers reliable results in an oncological population and whether its application can be extended to inpatient care. METHOD: Required data was collected as part of the PIKKO study. Initially, descriptive statistics and internal consistency (Cronbach's alpha) of the PREM's scales were analyzed. In addition, a sub-sample that assessed the same doctor at two consecutive measurement time points was observed with regard to test-retest reliability (Spearman correlation (rs) between both measurement time points). The measurement model of the Qualiskope-A was then examined using confirmatory factor analysis. To test the transferability to inpatient care, measurement invariance with regard to outpatients and inpatients was computed. RESULTS: A total of 476 patients was included in the study. Every score of the Qualiskope-A showed a left-skewed distribution in the sample and revealed pronounced ceiling effects. Cronbach's alpha coefficients were consistently>0,8. Within the test-retest group (n=197), a strong correlation (rs>0,5) was observed between the measurement time points. The fit indices calculated using confirmatory factor analysis showed a good model fit (CFI=0,958; RMSEA=0,026; SRMR=0,040; every factor loadings>0,6). The fit indices, calculated as part of the investigation of measurement invariance, consistently met the defined threshold values. CONCLUSION: The Qualiscope-A shows good reliability in the examined oncological sample. It can be used in both outpatient and inpatient settings (no indications of non-invariance were found). Due to pronounced ceiling effects, however, the item scaling should be revised.

(De-)centralized health care delivery, surgical outcome, and psychosocial health of transgender and gender-diverse people undergoing vaginoplasty: results of a retrospective, single-center study.

PURPOSE: Previous research on genital gender-affirming surgery lacked to build a framework that took various surrounding factors into account. E.g., transgender health care services are delivered in both centralized (by one interdisciplinary institution) and decentralized settings (by different medical institutions spread over several locations). The present study investigated the effects of different structural and clinical aspects of gender-affirming genital surgery on psychosocial outcomes. METHODS: We surveyed former transgender and gender-diverse people who completed a vaginoplasty between 2014 and 2018. 45 participants were included in the study. We calculated hierarchical linear regression analyses to assess the relationship between psychosocial outcome measures (gender congruence, mental health, quality of life) and different aspects of gender-affirming genital surgery (e.g., setting of service delivery). To address shortcomings regarding the small sample size, we applied a rigorous statistical approach (e.g., Bonferroni correction) to ensure that we only identify predictors that are actually related to the outcomes. RESULTS: A non-responder analysis revealed no systematic bias in the recruitment procedure. Treatment satisfaction was a significant predictor for gender congruence. Moreover, we found the setting of service delivery (centralized, decentralized) to predict psychological health and the physical health dimension of quality of life. The effect sizes of our models were moderate to high, and models explained up to 26% of the total variance with a power up to 0.83. CONCLUSION: The present study is an exploratory attempt into the manifold relationships between treatment-related factors (e.g., aesthetic outcome), the setting of service delivery, and their effects on gender-affirming genital surgery.

Efficacy of group therapy to reduce mental distress in women with non-metastatic breast cancer: A systematic review and meta-analysis of randomized controlled trials.

OBJECTIVE: Group treatments have proven to be effective for many mental disorders and showed beneficial effects in patients with medical illness. Aim of this systematic review and meta-analysis is to summarize the efficacy of group therapy for women with non-metastatic breast cancer. METHODS: We included studies comparing group therapy for women with non-metastatic breast cancer to non-active control groups, active control conditions, and individual psychotherapy. The primary outcome was mental distress, secondary outcomes were quality of life, coping, existential outcomes, fatigue, pain, and side effects. A comprehensive search was conducted in Medline, Web of Science, CENTRAL, PsycINFO, and DARE complemented by a manual search. Random-effects meta-analyses were run separately for different types of control groups. RESULTS: Thirty-seven studies (5902 patients) were included. Small effects on mental distress in favor of group treatment were found (non-active control groups: n = 19, g = 0.42, 95% CI [0.29; 0.56], I2  = 61.6%; active control conditions: n = 6, g = 0.20, 95% CI [0.06; 0.35], I2  = 0%). Cognitive-behavioral therapy (CBT) and third wave CBT group approaches proved to be most effective. Group treatments also showed beneficial effects on secondary outcomes, with most profound evidence on quality of life and coping. CONCLUSIONS: Results suggest that group interventions have the potential to reduce mental distress in women facing breast cancer. In the light of the considerable heterogeneity of most study effects, there is a need for more rigorous studies to strengthen the promising evidence and for trials examining the impact of patient and intervention characteristics on outcomes. REGISTRATION: PROSPERO international prospective register of systematic reviews, CRD42020184357.

Pre-surgery optimization of patients' expectations to improve outcome in heart surgery: Study protocol of the randomized controlled multi-center PSY-HEART-II trial.

The PSY-HEART-I trial indicated that a brief expectation-focused intervention prior to heart surgery improves disability and quality of life 6 months after coronary artery bypass graft surgery (CABG). However, to investigate the clinical utility of such an intervention, a large multi-center trial is needed to generalize the results and their implications for the health care system. The PSY-HEART-II study aims to examine whether a preoperative psychological intervention targeting patients' expectations (EXPECT) can improve outcomes 6 months after CABG (with or without heart valve replacement). EXPECT will be compared to Standard of Care (SOC) and an intervention providing emotional support without targeting expectations (SUPPORT). In a 3-arm multi-center randomized, controlled, prospective trial (RCT), N = 567 patients scheduled for CABG surgery will be randomized to either SOC alone or SOC and EXPECT or SOC and SUPPORT. Patients will be randomized with a fixed unbalanced ratio of 3:3:1 (EXPECT: SUPPORT: SOC) to compare EXPECT to SOC and EXPECT to SUPPORT. Both psychological interventions consist of 2 in-person sessions (à 50 minute), 2 phone consultations (à 20 minute) during the week prior to surgery, and 1 booster phone consultation post-surgery 6 weeks later. Assessment will occur at baseline approx. 3-10 days before surgery, preoperatively the day before surgery, 4-6 days later, and 6 months after surgery. The study's primary end point will be patients' illness-related disability 6 months after surgery. Secondary outcomes will be patients' expectations, subjective illness beliefs, quality of life, length of hospital stay and blood sample parameters (eg, inflammatory parameters such as IL-6, IL-8, CRP). This large multi-center trial has the potential to corroborate and generalize the promising results of the PSY-HEART-I trial for routine care of cardiac surgery patients, and to stimulate revisions of treatment guidelines in heart surgery.

Environmentally Friendly Layered Double Hydroxide Conversion Layers: Formation Kinetics on Zn-Al-Mg-Coated Steel.

Phosphate- or chromate-based industrially produced conversion layers, while effectively increasing adhesion for organic coatings and corrosion resistance, come at the cost of environmentally problematic and harmful treatment solutions and waste. In this respect, layered double hydroxide (LDH)-based conversion layers offer an environmentally benign alternative without toxicologically concerning compounds in the treatment solution. Here, we study an LDH conversion layer on Zn-Al-Mg-coated steel (ZM-coated steel), which was produced by immersion into a carbonate- and magnesium-containing alkaline solution. The mechanism and kinetics of the conversion layer formation were investigated with in situ open circuit potential measurements, cyclic voltammetry (CV), and scanning electron microscopy (SEM). Acceleration of the LDH layer formation through high convection in the treatment solution was found. This was attributed to a higher oxygen availability at the metal/solution interface because no diffusion-limited state during the layer formation is reached due to high convection. The importance of oxygen within the kinetics indicates a corrosion-like mechanism, with cathodic and anodic sites on the steel sample. The LDH formation happens by co-precipitation of ions present in the treatment solution and dissolved ions from the ZM-coated steel. With CV, SEM, and X-ray diffraction, the growth of the LDH conversion layer was investigated with respect to the immersion time. It was found that after 30 s, the sample surface was almost fully covered with an LDH layer, and with the increasing immersion time, the layer grows in thickness. Increased understanding on the kinetics and mechanism of the LDH conversion layer formation on ZM-coated steel gives rise to a targeted optimization of the treatment solution and process parameters.

Continual rehabilitation motivation of patients with postparalytic facial nerve syndrome.

PURPOSE: To evaluate the continued rehabilitation motivation in patients with postparalytic facial synkinesis (PFS). METHODS: In this single-center cross-sectional survey, the multidimensional patient questionnaire for assessment of rehabilitation motivation (PAREMO-20) was used to assess the rehabilitation motivation. Associations Sunnybrook and Stennert index grading, Facial Clinimetric Evaluation (FaCE) survey, general quality of life (SF-36), Liebowitz Social Anxiety Scale (LSAS), Patient Health Questionnaire (PHQ)-9, technology commitment and affinity, and interest in further therapy were analyzed. RESULTS: 69 adults with PFS (73% women; median age: 54 years) answered the survey. In comparison to prior treatment forms, there was a significant higher future interest in computer-based home facial training (p < 0.0001). For PAREMO Psychological burden subscore, SF36 Emotional role was the highest negative correlative factor (p < 0.0001). For PAREMO Physical burden subscore, SF-36 General health was the highest negative correlative factor (p = 0.018). Working (p = 0.033) and permanent relationship (p = 0.029) were the only independent factors correlated to PAREMO Social Support Subscore. Higher positive impacts of technology affinity was inversely correlated to PAREMO Knowledge subscore (p = 0.017). Lower SF-36 Role physical subscore p = 0.045) and a lower SF-36 General health (p = 0.013) were correlated to a higher PAREMO Skepticism subscore. CONCLUSIONS: Patients with PFS seem to have a high facial motor and non-motor psychosocial impairment even after several facial therapies. Rehabilitation-related motivation increases with both, higher facial motor and non-motor dysfunction. Social and emotional dysfunction are drivers to be interested in innovative digital therapy forms.

Dynamic cell contacts between periportal mesenchyme and ductal epithelium act as a rheostat for liver cell proliferation.

In the liver, ductal cells rarely proliferate during homeostasis but do so transiently after tissue injury. These cells can be expanded as organoids that recapitulate several of the cell-autonomous mechanisms of regeneration but lack the stromal interactions of the native tissue. Here, using organoid co-cultures that recapitulate the ductal-to-mesenchymal cell architecture of the portal tract, we demonstrate that a subpopulation of mouse periportal mesenchymal cells exerts dual control on proliferation of the epithelium. Ductal cell proliferation is either induced and sustained or, conversely, completely abolished, depending on the number of direct mesenchymal cell contacts, through a mechanism mediated, at least in part, by Notch signaling. Our findings expand the concept of the cellular niche in epithelial tissues, whereby not only soluble factors but also cell-cell contacts are the key regulatory cues involved in the control of cellular behaviors, suggesting a critical role for cell-cell contacts during regeneration.

Recent Developments in Group Psychotherapy Research.

This article reviews group psychotherapy research published within the past 30 years, predominantly focusing on outcomes of group treatments for patients with various mental disorders. Additionally, meta-analyses on the efficacy of group treatments for patients with cancer or chronic pain are summarized. Results strongly support the use of group therapy and demonstrate outcomes equivalent to those of individual psychotherapy. The research also appears to emphasize the effect of feedback on outcomes in group treatments and an association between treatment outcomes and group cohesion and alliance. Other promising developments in the field of group therapy are discussed.

Efficacy of Hypnosis in Adults Undergoing Surgical Procedures: A meta-analytic update.

In this meta-analysis we updated a review from 2013 investigating the evidence on the efficacy of hypnosis in adults undergoing surgical procedures compared to standard care alone or an attention control. A comprehensive literature search using Medline, CENTRAL, Web of Science, PsycINFO, ProQuest Dissertations and Theses database, and manual searches were conducted to identify randomized controlled trials. In this update, N = 23 eligible studies were added to the existing study pool, resulting in N = 50 studies with 4269 patients. Random effects meta-analyses revealed positive treatment effects on mental distress (g = 0.55, 95% CI [0.39; 0.70], NNT = 3.32), pain (g = 0.37, 95% CI [0.25; 0.50], NNT = 4.78), medication consumption (g = 0.46, 95% CI [0.23; 0.68], NNT = 3.95), recovery (g = 0.26, 95% CI [0.09; 0.42], NNT = 6.91), and surgical procedure time (g = 0.23, 95% CI [0.14; 0.33], NNT = 7.6). No effects were found for physiological parameters (g = 0.13, 95% CI [-0.06; 0.33], NNT = 13.26). 95% prediction intervals included the null effect for all outcomes except for procedure time. In conclusion, although positive effects of hypnosis could be shown, overall generalizability is limited due to high heterogeneity of the study results that could not be explained by characteristics of patients, interventions, or study methods.

[Attachment Characteristics and Speciality Choice among Medical Students]. / Bindungsmerkmale und Facharztpräferenz bei Medizinstudierenden.

OBJECTIVES: Based upon a study by Ciechanowski et al. [27], a parallel survey was performed at the medical school of the University of Jena with the goal to determine a relationship between specialty choice and attachment characteristics among medical students. METHOD: A sample of 411 medical students from different phases of the medical training (73,2% females, mean age: 22.7 yrs.) were asked about their current specialty choice and invited to describe themselves in three different attachment questionnaires. These were the Relationship Style Questionnaire (RSQ), the Bielefeld Partnership Expectation Questionnaire and the Relationship-specific Attachment Scales for adults in the versions related to the mother and the partner. In comparing subgroups, we first used Ciechanowski et al.'s [27] differentiation of specialty contrasting primary and non-primary care specialties. In addition, a categorization of Buddeberg-Fischer et al. [29] differentiating a total of 7 subgroups was used (general medicine, internal medicine, surgery, anesthesiology/emergency medicine, pediatrics, psychiatry/neurology and obstetrics/gynecology). RESULTS: Comparing the groups according to Ciechanowski et al.'s categorization, differences occurred that were not replicating the original study: Students of the first subgroup (primary care) appeared to be more insecurely attached (according to the RSQ) and showed higher scores in subscales indicating dependency and preoccupation (e. g. fear of separation, dependently related to mother and partner). Similar as in Ciechanowski's study, the second group (non-primary care) revealed more individuals categorized as avoidant (or self-reliant). To differentiate the picture, the 7 categories according to Buddeberg-Fischer et al. [27] were compared. This comparison indicated that future pediatricians were classified as more insecure and ambivalent, whereas anesthesiologists more commonly were avoidant and dismissing. This picture was confirmed using comparisons of the questionnaire subscales. Since gender differences occurred both, related to specialty choice as well as attachment, gender was considered as a covariate in the analyses. CONLUSIONS: In contrast to the study of Ciechanowski et al. [27], future pediatricians as part of the primary care group were characterized by a tendency to be dependent and preoccupied in all attachment measures, whereas the result of a tendency to be more avoidant and self-reliant among anesthesiologists and students choosing emergency medicine was more in line with the US-American study. Future research dealing with the motivation to choose specific fields of action in medicine should consider other psychological characteristics as well as biographical aspects.

[Mental Distress and Resilience in Severe Somatic Diseases: An Analysis of Dyadic Relations]. / Psychische Belastung und Resilienz im Rahmen schwerer körperlicher Erkrankungen: eine Analyse dyadischer Zusammenhänge.

AIMS: In this article, we present 3 studies examining patients with current or previous severe physical illness and their partners with respect to dyadic concordance, gender and role differences in mental distress and resilience. METHODS: Study 1 included 55 patients and their partners on average 4.5 years after severe sepsis. Study 2 involved 49 patients with lung cancer, predominantly in advanced stage with metastases, and their partners. In study 3, 69 cancer patients with various tumor entities and tumor stages undergoing additional outpatient homeopathic treatment as well as their partners were examined. All studies used the Hospital Anxiety and Depression Scale (HADS) to measure mental distress and the short version of the Resilience Scale RS-13 to assess resilience as a personality trait. Results were meta-analytically pooled across the 3 studies. RESULTS: We found dyadic concordances between patient and partner in anxiety (r=0.29 [0.06; 0.48], I2=55%) and depression (r=0.44 [0.31; 0.55], I2=0%), but not in resilience. Gender differences emerged consistently across all three studies, both female patients and partners showed more severe anxiety symptoms than males (d=0.58 [0.26; 0.91], I2=0% for patients; d=0.53 [- 0.06; 1.12], I2=69% for partners). Results were heterogeneous for gender differences in depression and for role differences. Higher resilience scores were associated with lower mental distress both in patients and partners. There is some evidence that resilience has a protective effect for mental distress of the spouse. DISCUSSION AND CONCLUSION: Based on the results on dyadic concordance between patients and partners in mental distress somatic diseases should always be considered from a systemic perspective. Mental distress of both patients and partners requires special attention in psychosocial support, and partnership resources should be taken into account for coping with the disease.

[Brief Scale to assess Social Support in Chronic Diseases (SUCE-4)]. / Kurzfragebogen zur Sozialen Unterstützung bei chronischen Erkrankungen (SUCE-4).

AIM OF THE STUDY: Social support is an important resource for coping with serious chronic diseases such as cancer. The available questionnaires for the measurement of social support are usually extensive. So far, available short versions do not completely aim at situation-specific requirements of the social environment of chronically ill patients. Therefore, a short form of a measure of perceived social support was developed consisting of only 4 items: the SUCE-4. METHODS: A sample of cancer patients (N=424) was examined at 2 time points. The factor structure was evaluated using exploratory and confirmatory factor analysis (CFA) and reliability and validity were examined. RESULTS: The expected factor structure was confirmed (for CFA: RMSEA=0.028). The short questionnaire revealed a good internal consistency (Cronbach's α>0.86). In terms of the first indications of validity, significant and expected correlations with psychological quality of life, self-efficacy expectations, depression and anxiety were found at both time points. CONCLUSION: The SUCE-4 is an economical, reliable and valid instrument for the assessment of perceived social support in the context of severe chronic diseases such as cancer.

Clinical, social, and psycho-oncological needs of adolescents and young adults (AYA) versus older patients following hematopoietic stem cell transplantation.

PURPOSE: To analyze demand for information and advice as well as medical, psychological, and social needs of adolescents and young adults (AYAs) and older patients (non-AYA) after hematopoietic stem cell transplantation (HSCT). METHODS: A questionnaire was sent to 100 HSCT recipients comprising n = 50 AYAs (aged 19-39 years) and n = 50 non-AYAs (> 39 years). The questionnaire covered the categories: (a) patient characteristics; (b) need for advice, on medical, psychological, and social care topics; (c) medical, psychological, and social needs, and (d) preferred forms and channels of information. RESULTS: The return rate was 65%. 62.5% of patients indicated medical needs; 41.1% psychological needs, and 64.9% had needs concerning social issues. Among medical aspects, aftercare was important to both groups. Nutrition was of highest interest for AYA, while non-AYAs identified fatigue and vaccination as their most pressing concerns. Body shape/sexuality and relaxation techniques were the most common psychological issues for AYA, while coping strategies were important for both cohorts. Family, relationship and friends were of less interest in both groups. Rehabilitation and premature retirement were of highest interest for both cohorts. The preferred mode of communicating advice was one-to-one conversation in a quiet environment as opposed to informational sessions. CONCLUSION: Despite well-established aftercare programs following HSCT, many patients describe unmet needs regarding medical, psychological, and social policy issues. AYA and non-AYA differ in informational needs after HSCT, and, therefore, age-appropriate informational materials are necessary. Particularly AYA may profit from information covering body-shape/sexuality and nutrition, while both cohorts require information covering coping strategies and aftercare.

[Feminizing Genital Gender-affirmative Surgery in Centralized and Decentralized Health Care Settings - The Hamburg TransCare study]. / Interdisziplinär integriert oder dezentral verteilt? Versorgungssettings im Kontext feminisierender Genitaloperationen ­ Studienprotokoll zur Hamburger TransCare-Studie.

BACKGROUND: Gender Dysphoria (GD, formerly known as transsexualism) describes distress and impairment in an individual caused by the incongruence between the experienced gender and the sex assigned at birth (Gender Incongruence: GI). Transgender health care focusses on gender-affirmative treatments (e. g., hormone therapy) and associated needs (e. g., psychotherapy). Moreover, genital surgery is considered an effective treatment to reduce GI/GD and improve mental health and quality of life. Interdisciplinary cooperation between the associated medical facilities is regarded as evidence-based health care. OBJECTIVES: To date, THC is delivered in zwei different health care settings: interdisciplinary and centralized from one medical institution vs. decentralized, spread over several medical institutions. In Germany, individuals with GI/GD access health care mostly in decentralized structures. The consequences of feminizing genital surgery carried out in centralized and decentralized health care structures in terms of quality and effectiveness have not been investigated so far. The goal of the TransCare study is to prospectively examine individuals with GI/GD seeking feminizing genital surgery regarding demographics and clinical characteristics as well as to analyze the influence of centralized and decentralized health care settings on the psychosocial and clinical outcome. MATERIALS AND METHODS: To recruit a valid and comprehensive sample, participants were questioned prospectively. RESULTS: The results of the study should help gain new insights into the influence of centralized and decentralized health care settings carrying out feminizing genital surgery on psychosocial and clinical outcomes for the patients. CONCLUSION: Based on the TransCare study, we suggest that health care should be improved according to individual patient needs.

Patient information, communication and competence empowerment in oncology (PIKKO) - evaluation of a supportive care intervention for overall oncological patients. Study protocol of a non-randomized controlled trial.

BACKGROUND: Cancer patients have to undergo a difficult medical therapy and are also confronted with various psychological, social and economic problems. Support is available from many providers, but patients often gain no access to it. Accordingly, there is a need for a single point of contact that can provide advice, information and assistance. In the state of Saarland, Germany, a supportive new consulting and information path (PIKKO) for all types of cancer is currently evaluated by the German Cancer Society, the Cancer Society of the Saarland, three statutory health insurances and the Jena University Hospital. PIKKO is designed to improve quality of life, self-efficacy, health literacy and patient satisfaction and to reduce psychological distress, related health care costs and the days of inability to work. This methodical work presents the process and analysis planning of this evaluation. METHODS: The study population includes all cancer types, both new and existing diseases. PIKKO (with patient navigator, oncological knowledge database, specialized oncological counseling) is evaluated within a controlled, non-randomized, comparative, multicenter, longitudinal design. In addition to patient surveys, data from statutory health insurances and utilization data from the web database are collected, and interviews with patient navigators and doctors are carried out. Patients are assigned to a control (usual care) or an intervention group (u. c. + PIKKO). Primary outcome is the health related quality of life (SF-12) six months after baseline. Secondary outcomes are self-efficacy (GSE), psychological distress such as depression (PHQ-9) or anxiety (GAD-7), health literacy (HLS-EU-Q47) and patient satisfaction in health care (Qualiskope-A). Furthermore, the time course of direct costs of medical care (e.g. work disability days) and usage data of the intervention modules are analyzed. Among other statistical procedures, we use t-tests, univariate tests and growth curve models. DISCUSSION: If PIKKO proves to be effective, recommendations can be made to health organizations, which should lead to the concept being rolled out throughout Germany and included into oncological guidelines. We expect PIKKO to be a useful addition to usual cancer care, helping to improve the quality of life of cancer patients and reduce healthcare costs. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21.02.2019, the reason for the delay was the prioritization of the study management in the first year to establish the new approach into practice). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.

[A group intervention to promote work ability in patients with head and neck cancer]. / Eine Gruppenintervention zur Förderung der Arbeitsfähigkeit für Patienten mit Kopf-Hals-Tumoren.

INTRODUCTION: Despite high distress the majority of head and neck cancer patients does not use any psycho-oncological counselling or psychotherapeutic support. Additionally, patients with head and neck cancer have an increased risk of not returning to work compared to other cancer patients. Therefore, we have developed a group intervention program which aims at improving work ability in patients with head and neck cancer as well as their quality of life, self-efficacy and psychological well-being. MATERIAL AND METHODS: In a randomized controlled trial head and neck cancer patients either receive a group intervention or socio-legal counselling. Male head and neck cancer patients with elevated levels of psychological and work-related distress are included. The group intervention consists of eight sessions. Groups are led by both a psychotherapist and a former head and neck cancer patient (peer). Feasibility and acceptability of the group intervention were tested by means of a pilot group. Each session was evaluated by pilot group participants. Semi-structured interviews were used to assess relevance of content and practicability. RESULTS: 113 patients were personally addressed, of which four patients participated in the pilot group. Patients reported that the intervention fit very well with their daily life and expressed satisfaction with it. Three patients emphasized the importance of the peer. DISCUSSION: The presence of the peer as identification figure seems to be of crucial importance. To increase recruitment numbers inclusion criteria will be modified and participation costs will be reduced.