12-Month Trajectories of Health-Related Quality of Life Following Hospitalization in German Cancer Centers-A Secondary Data Analysis.

Patient-reported outcomes (PROs) offer a diverse array of potential applications within medical research and clinical practice. In comparative research, they can serve as tools for delineating the trajectories of health-related quality of life (HRQoL) across various cancer types. We undertook a secondary data analysis of a cohort of 1498 hospitalized cancer patients from 13 German cancer centers. We assessed the Physical and Mental Component Scores (PCS and MCS) of the 12-Item Short-Form Health Survey at baseline (t0), 6 (t1), and 12 months (t2), using multivariable generalized linear regression models. At baseline, the mean PCS and MCS values for all cancer patients were 37.1 and 44.3 points, respectively. We observed a significant improvement in PCS at t2 and in MCS at t1. The most substantial and significant improvements were noted among patients with gynecological cancers. We found a number of significant differences between cancer types at baseline, t1, and t2, with skin cancer patients performing best across all time points and lung cancer patients performing the worst. MCS trajectories showed less pronounced changes and differences between cancer types. Comparative analyses of HRQoL scores across different cancer types may serve as a valuable tool for enhancing health literacy, both among the general public and among cancer patients themselves.

Predictors of cancer patients' utilization of psychooncological support: Examining patient´s attitude and physician´s recommendation.

PURPOSE: Patients with cancer suffer from a wide range of psychological distress. Nevertheless, in the literature low utilization rates of psychooncological services are reported. Various factors may influence the utilization of professional support during inpatient care. Up to now it is unclear to what extent patients' attitude towards psychooncological support and physicians' recommendation for psychooncological care may influence the utilization. METHODS: In a multicenter longitudinal observational study in Comprehensive Cancer Centers Germany, 1398 patients with mixed cancer diagnoses were assessed at baseline during their hospital stay with respect to psychooncological distress and the need for and use of psychooncological services. RESULTS: Psychooncological support was used by almost 28.4% of patients up to this time. A positive attitude towards psychooncological support was reported by 41.6%. A recommendation of psychooncological support by a physician was received by 16.2%. These patients reported a significant higher level of distress compared to patients who did not received a recommendation. Multivariable logistic regression detected that the utilization rate was 3.79 times higher among patients with positive attitude towards psychooncological support (OR, 3.79; 95% CI 2.51-5.73, p < 0.001). Utilization was 4.21 times more likely among patients who received a physician´s recommendation (OR, 4.21; 95% CI 2.98-5.95, p < 0.001). CONCLUSION: The results of the study provide evidence of the relevance of giving more attention to psychooncological distress and attitudes towards psychooncological care. To reduce reservations, patients need low-threshold information about the psychooncological services offered.

Quality of life after risk-reducing salpingo-oophorectomy in women with a pathogenic BRCA variant.

BACKGROUND: Risk-reducing salpingo-oophorectomy (RRSO) is recommended to women with a pathogenic BRCA variant, but as a main side effect, RRSO could lead to an early onset of menopause. AIM: To evaluate the impact of RRSO and preoperative menopausal status on menopausal symptoms, sexual functioning, and quality of life (QOL). METHODS: The study was conducted between November 2019 and April 2020. Women were included who tested positive for a pathogenic BRCA1/2 variant between 2015 and 2018. Depression levels, QOL, and global health status were measured and compared with those of women who opted against RRSO. Furthermore, women who underwent RRSO treatment were asked to report menopausal complaints that they experienced at 1 month postsurgery and any current complaints. OUTCOMES: RRSO had no significant impact on QOL, but women who were premenopausal at the time of surgery reported more sexual complaints than postmenopausal women. RESULTS: In total, 134 carriers of a BRCA mutation were included: 90 (67%) underwent RRSO and 44 (33%) did not. At the time of the survey, neither the control nor experimental group experienced significant changes in QOL (b = -0.18, P = .59). Women who underwent RRSO reported a significantly lower global health status (b = -0.66, P = .05). Women who were premenopausal at the time of surgery were bothered more by sexual symptoms (b = 0.91, P = .19) but experienced fewer vasomotor complaints (b = -1.09, P = .13) than women who were postmenopausal at the time of RRSO. CLINICAL IMPLICATIONS: The decrease of sexual functioning after RRSO should be an integral part of preoperative counseling because it is important for BRCA carriers, especially for premenopausal women. STRENGTHS AND LIMITATIONS: Some strengths of the present study were the long follow-up, a high response rate, and the existence of a control group, whereas defining menopausal status by last menstrual bleeding and self-report of data (eg, breast cancer history) increased the risk of errors. CONCLUSION: Our study indicated that women who underwent RRSO experienced no difference in QOL when compared with women without RRSO and that patients with premenopausal status seemed to be at higher risk to experience sexual complaints after surgery.

Feasibility of a patient-oriented navigation programme for patients with lung cancer or stroke in Germany: Protocol of the CoreNAVI study.

BACKGROUND: Patient navigation programmes were introduced in the United States and recently gained interest in Germany, where the health care system is fragmented. Navigation programmes aim to decrease barriers to care for patients with age-associated diseases and complex care paths. Here we describe a feasibility study to evaluate a patient-oriented navigation model that was developed in a first project phase by integrating data about barriers to care, vulnerable patient populations and existing support services. METHODS: We designed a mixed-methods feasibility study that consists of two two-arm randomized controlled trials aligned with observational cohorts. The intervention group of the RCTs gets support by personal navigators for 12 months. The control group receives a brochure with regional support offers for patients and caregivers. The feasibility of the patient-oriented navigation model for two prototypic age-associated diseases, lung cancer and stroke, is evaluated with regard to its acceptance, demand, practicality and efficacy. This investigation includes process evaluation measures with detailed documentation of the screening and recruitment process, questionnaires about satisfaction with navigation, observant participation and qualitative interviews. Estimates of efficacy for patient-reported outcomes are obtained at three follow-up time points including satisfaction with care and health-related quality of life. Furthermore, we analyze health insurance data from patients of the RCT insured at a large German health insurance (AOK Nordost) to investigate heath care utilization, costs and cost effectiveness. TRIAL REGISTRATION: The study is registered at the German Clinical Trial Register (DRKS-ID: DRKS00025476).

Caring for dependent children impacts practical and emotional problems and need for support, but not perceived distress among cancer patients.

OBJECTIVE: More than one in 10 cancer patients care for dependent children. It is unclear whether this status makes a difference in terms of the distress and associated problems they experience, or whether it is linked to differences in the need for or utilization of psychosocial support. METHODS: Secondary analysis of a cross-sectional German study in National Comprehensive Cancer Centers using self-report standardized questionnaires administered to inpatients. Patients living with dependent children (n = 161) were matched by age and sex with a subsample of 161 cancer patients not living with dependent children. The resulting sample was tested for between-group differences in Distress Thermometer (DT) scores and the corresponding DT Problem List. Additionally, between-group differences in measures of the need for and utilization of psychosocial support were examined. RESULTS: More than 50% of all patients suffered from clinically relevant distress. Patients living with dependent children reported significantly more practical (p < 0.001, η2 p = 0.04), family (p < 0.001, η2 p = 0.03), and emotional problems (p < 0.001, η2 p = 0.01). Although reporting a greater need for psychological support, parents with cancer were not found to more frequently utilize any type of psychosocial support. CONCLUSIONS: The specific problems and needs of parents with cancer who care for dependent children are currently not sufficiently addressed in the clinical care pathways. All families should be helped to establish open and honest communication as well as understand the available support systems and what they can provide. Tailored interventions should be implemented for highly distressed families.

Prevalence of mental disorders, psychosocial distress, and perceived need for psychosocial support in cancer patients and their relatives stratified by biopsychosocial factors: rationale, study design, and methods of a prospective multi-center observational cohort study (LUPE study).

Background: Despite remarkable progress, cancer remains a life-threatening disease for millions of people worldwide, also resulting in significant psychosocial limitations. High-quality, comprehensive cancer care requires patient and family involvement and the provision of needs-based, targeted psychosocial services. Although progress has been made in understanding the occurrence of mental comorbidity and psychosocial distress in cancer patients, comparatively little is known about the course of psychological comorbidity and psychosocial distress in early survivorship among patients and their families. We therefore aim to estimate the prevalence of mental disorders according to the DSM-5, psychosocial distress, perceived needs for psychosocial support and utilization of psychosocial support offers in newly diagnosed cancer patients and their relatives, taking into account potential contributing biopsychosocial factors for the occurrence of psychological comorbidity. Methods/design: This study follows a prospective multi-center observational cohort design across four measurement time points: within 2 months after cancer diagnosis (t1), and in the follow-up period at 6 months (t2), at 12 months (t3), and at 18 months (t4) after t1. Patients older than 18 years who have a confirmed initial diagnosis of a malignant solid tumor and are scheduled for cancer treatment at one of the participating cancer centers are eligible for study participation. Relatives of eligible patients are also eligible for study participation if they are older than 18 years. Patients are interviewed using the Structured Clinical Interview for DSM-5 Disorders (SCID-5-CV). In addition, patients and relatives receive a set of validated questionnaires at each measurement time point, covering comorbid conditions and functional performance, perceived psychological distress and quality of life, partnership aspects and social relationships, supportive care needs and use of psychosocial support services, health literacy, and health behavior and meaning in life. Discussion: This prospective multi-center observational cohort study has a major focus on increasing quality of care and quality of life in cancer survivors through providing rigorous longitudinal data for the development and implementation of target group-specific psychosocial support services. Trial registration: NCT04620564, date of registration 9/11/2020; DKG OnkoZert: Registrier-No.: ST-U134, date of registration 5/11/2021.

Prevalence and severity of anxiety in cancer patients: results from a multi-center cohort study in Germany.

PURPOSE: Anxiety is an accompanying symptom in cancer patients that can have a negative impact on patients. The aim of the present analyses is to determine the prevalence of anxiety, taking into account sociodemographic and medical variables, and to determine the odds ratio for the occurrence of anxiety in cancer patients compared to general population. METHODS: In this secondary analyses, we included 4,020 adult cancer patients during and after treatment from a multi-center epidemiological study from 5 regions in Germany in different treatment settings and a comparison group consisting of 10,000 people from the general population in Germany. Anxiety was measured with the Generalized Anxiety Disorder (GAD-7) questionnaire. In multivariate analyses adjusted for age and sex, we calculated the odds of being anxious. RESULTS: The prevalence of anxiety was observed to be 13.8% (GAD-7 ≥ 10). The level of anxiety was significant higher for patients in rehabilitation, compared to patients during inpatient and outpatient treatment (p = .013). Comparison with the general population yielded a 2.7-fold increased risk for anxiety among cancer patients (95% CI 2.4-3.1; p < .001). Patients with bladder cancer (OR, 5.3; 95% CI 3.0-9.4) and testicular cancer (OR, 5.0; 95% CI 2.1-12.1) showed the highest risk of having high levels of anxiety. CONCLUSION: The results highlight the importance of identifying anxiety in cancer patients.

Depression and anxiety in patients with uveal melanoma undergoing curative proton treatment-A prospective study.

OBJECTIVE: We prospectively addressed whether patient characteristics, oncological outcomes, or metastatic risk impacted depression and anxiety in patients undergoing curative proton treatment for uveal melanoma (UM). METHODS: We assessed patient-reported outcomes regarding anxiety (GAD-7) before and 2 years after proton therapy and depression (PHQ-9) before, 1, and 2 years after proton therapy. We performed descriptive statistics and used linear mixed effect modeling to analyze how the oncological outcome and baseline characteristics impacted anxiety and depression scores. RESULTS: Of 130 (65 female) patients included, six developed metastatic disease and three died during the 2-year follow-up. The mean anxiety declined from 5.86 (SE = 0.56) at baseline to 3.74 (SE = 0.46) at 2 years (ß = 2.11; SE = 0.6; p < .001). Depressive symptoms decreased moderately from 4.36 (SE = 0.37) at baseline to 3.67 (SE = 0.38) 2 years later. Patients with unfavorable metastatic risk or disease progression had elevated anxiety and depression scores. Although female patients reported overall higher anxiety scores, both sexes recovered substantially and to a similar extent during the 2-year follow-up (ß = 2.35; SE 0.87; p = .007 vs. ß = 1.88; SE = 0.60; p = .002). A trend for prolonged depressive symptoms was observed in patients living alone compared to patients living with family members 1 year after the treatment (M = 5.04 [SE = 0.85] vs. M = 3.73 [SE = 0.31], ß = 1.32; SE = 0.92; p = .152). Patients with high baseline anxiety levels showed initially more severe depressive symptoms, which improved significantly during follow-up (ß = 1.65; SE = 0.68; p = .017). CONCLUSION: Most patients undergoing proton therapy for UM experienced mild, transient depressive symptoms and anxiety. Patients with high pre-treatment anxiety, unfavorable prognoses, and patients living alone may be more vulnerable to prolonged depressive symptoms. To these patients a more tailored support could be offered at an early stage of the disease.

Couples Coping With Hematological Cancer: Support Within and Outside the Couple - Findings From a Qualitative Analysis of Dyadic Interviews.

Objective: Cancer affects the patients as well as their partners. Couples use different strategies to cope with cancer and the associated burden: individual coping, dyadic coping, and support from the social network and from professional health care. The aim of this qualitative dyadic interviews is to gain a deeper and more differentiated understanding of the support system inside and outside of the couple. Methods: Ten heterosexual couples (patients: seven men and three women) with different ages (patients: range = 22-75; spouses: range = 22-74), different hematological cancer (e.g., acute myeloid leukemia, non-Hodgkin's lymphoma) and cancer stages (initial diagnosis or relapse) participated in the study. Semi-structured dyadic interviews were conducted. Data of the verbatim transcripts were systematically coded and analyzed following structuring content analysis. Results: Three main categories (individual coping, dyadic coping, and outside support) and ten subcategories about coping and support strategies in hematological cancer patients and their spouses could be identified. All couples described cohesion in relationship as an essential common dyadic coping strategy. Most strategies were focused on the patient's wellbeing. Furthermore, couples reported different common plans for the future: while some wanted to return to normality, others were reaching out for new goals. Conclusion: Couples used various coping and support strategies, that differed in type and frequency between patients and spouses. Most of the strategies were perceived as beneficial, but some also triggered pressure. Overall, spouses seem to need more psychological support to improve their own wellbeing.

Development of a patient-oriented navigation model for patients with lung cancer and stroke in Germany.

BACKGROUND: The concept of patient navigation was first established in the USA to support vulnerable patient groups in receiving timely and comprehensive access to cancer care. It has recently gained increasing interest in Germany to support patients with chronic diseases in a fragmented healthcare system. The aim of this paper is to present the development of such a model adapted to the German context based on the results of mixed-methods studies investigating the need for and barriers to patient-oriented care. METHODS: In a process adapted from Delphi rounds, we conducted regular structured workshops with investigators of the project to discuss results of their studies and identify content and structure of the model based on the data. Workshop discussions were structured along seven core components of a navigation model including target patient groups, navigator tasks, occupational background and education of navigators, and patient-navigator interaction mode. RESULTS: Using an approach based on empirical data of current care practices with special focus on patients' perspectives, we developed a patient-oriented navigation model for patients who have experienced stroke and lung cancer in the German healthcare context. Patients without personal social support were viewed as struggling most with the healthcare system, as well as multimorbid and elderly patients. Navigators should serve as a longer-term contact person with a flexible contact mode and timing based on the individual situation and preferences of patients. Navigator tasks include the provision of administrative and organizational support as well as referral and guidance to available resources and beneficial health programs with special forms of knowledge. Implementation of the navigator should be flexibly located to ensure a reliable outreach to vulnerable patients for first contact in settings like specialized in-patient and out-patient settings, while navigation itself focuses on care coordination in the out-patient setting. CONCLUSION: Flexibility of navigator tasks needed to be a core characteristic of a navigation model to be perceived as supportive from patients' perspectives. In a subsequent feasibility study, an intervention based on the model will be evaluated according to its acceptance, demand, and practicality.

Fear of prognosis? How anxiety, coping, and expected burden impact the decision to have cytogenetic assessment in uveal melanoma patients.

BACKGROUND: Cytogenetic testing (CGT) in uveal melanoma patients reveals prognostic information about the individual risk of developing distant metastasis with dismal prognosis. There is currently no medical intervention strategy with proven effect on the prognosis, rendering the result of the cytogenetic testing purely informative. We explored patients' socio-demographic backgrounds, psychological preconditions, coping strategies, external influences, and concerns about "knowing their fate" to study their possible interactions with decision-making for CGT. METHODS: Uveal melanoma patients were asked to complete questionnaires on their interest in undergoing CGT for prognostication and the factors influencing their decision. Data were collected on socio-demographics, baseline anxiety (GAD-7), depression (PHQ-9), coping strategies (Brief COPE), and assumed future concerns regarding the CGT result. Data were analyzed by using multiple ordinal logistic regression and exploring estimated marginal effects. RESULTS: Questionnaires were returned by 121 of 131 (92.4%) patients. Fifty-two patients (43%) had no interest in CGT, 34 (28.1%) were undecided, and 35 (28.9%) were interested. We observed no significant differences regarding age, sex, partnership, education, occupation, baseline anxiety, or depression. Decision-making favoring CGT was influenced by the treating physicians, internet resources, and level of baseline anxiety. Patients were likely to reject CGT when they worried that "knowing the result will have an unintended influence" on their life. CONCLUSION: Decision-making about CGT for prognostication in uveal melanoma is burdensome to many patients and in general not guided by medical advice regarding further treatment and screening procedures. The psychological impact of the decision is therefore unique and requires careful support by psycho-oncologists considering the patient's fears and expectations.

Feasibility and Possible Effects of Mindful Walking and Moderate Walking in Breast Cancer Survivors: A Randomized Controlled Pilot Study With a Nested Qualitative Study Part.

INTRODUCTION: Breast cancer (BC) survivors often suffer from disease- and therapy-related long-term side-effects. The study aim was to explore the feasibility, adherence, and individual experiences as well as possible effects of 2 different walking interventions in BC patients. METHODS: This randomized controlled, pragmatic pilot trial included a qualitative study component. BC patients were randomized to either mindful walking (MFW) with mindfulness exercises and walking or moderate walking (MW) alone in weekly group sessions over 8 weeks. After 8 and 16 weeks, satisfaction, and self-perceived effectiveness as well as different health-related outcomes including health-related (WHOQOL-BREF) and disease-specific quality of life (FACT-G), perceived stress (PSQ) and cancer-related fatigue (CFS-D) were assessed. ANCOVA was used to evaluate differences in study outcomes. Qualitative data included 4 focus group interviews including 20 patients and were analyzed using a directed qualitative content analysis approach. RESULTS: Altogether, 51 women (mean age 55.8 years (SD 10.9)) were randomized (n = 24 MFW; n = 27 MW). Both groups would recommend the course to other BC patients (MFW 88.9%; MW 95.2%) and showed possible improvements from baseline to week 8, without statistically significant difference between groups: WHOQOL-BREF (MFW: adjusted mean 65.4 (95% confidence interval (CI), 57.1-73.7); MW: 61.6 (53.6-69.6)); FACT-G (MFW: 76.0 (71.5-80.5); MW: 73.0 (68.5-77.4)); PSQ (MFW: 45.3 (40.5-50.1); MW: 45.4 (40.8-50.0)); CFS-D (MFW: 24.3 (20.8-27.8); MW: 25.5 (22.1-28.8)). Improvements lasted until the 16-weeks follow-up. The qualitative analysis suggested that MFW primarily promoted mindfulness, self-care, and acceptability in BC patients, whereas MW activated and empowered the patients as a result of the physical exercise. CONCLUSION: Both study interventions were positively evaluated by patients and showed possible pre-post effects in disease-specific health-related outcomes without differences between groups. The qualitative analysis results indicate that different resources and coping strategies were addressed by the 2 study interventions. TRIAL REGISTRATION: DKRS00011521; prospectively registered 21.12.2016; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011521.

Return to work after cancer: Improved mental health in working cancer survivors.

OBJECTIVE: Aim of the study was to compare working and non-working patients over a period of 12 months regarding socio-demographic, cancer-specific and mental health parameters. METHODS: This study was conducted as part of a Germany-wide longitudinal survey among 1398 patients in 13 national Comprehensive Cancer Centers. The sample used for analysis consisted of n = 430 cancer patients younger than 65 years (age M = 52.4 years, SD = 8.1; 67.0% females). Socio-demographic, cancer-specific and mental health parameters (Depression: Patient Health Questionnaire, Anxiety: Generalized Anxiety Disorder Scale, Distress: Distress Thermometer) were assessed at baseline during hospitalization and at 12 months follow-up. RESULTS: 73.7% of all patients (n = 317) have returned to work after one year. While working and non-working patients did not differ in socio-demographic parameters, there were significant differences in the presence of metastases, tumor and treatment status. Mixed analysis of variances revealed significant interactions between working status and time for depression (p = 0.009), anxiety (p = 0.003) and distress (p = 0.007). Non-working patients reported higher levels of depression, anxiety and distress than working patients over time. A logistic regression showed significant associations between lower depression (p = 0.019), lower distress (p = 0.033) and the absence of a tumor (p = 0.015) with working status. CONCLUSIONS: The majority of cancer survivors returned to work. Non-working patients had higher levels of depression, anxiety and distress than working patients. After controlling for cancer-specific factors, mental health parameters were still independently associated with working status. Return to work can thus be associated with an improved mental health in cancer survivors. In order to establish causality, further research is necessary.

[Structured Collection of Data on Support Offers for Lung Cancer and Stroke Patients in Berlin]. / Strukturierte Erfassung von Unterstützungsangeboten für Lungenkrebs- und Schlaganfallbetroffene in Berlin.

OBJECTIVES: The aim of this study was to investigate available offers of support for stroke and lung cancer patients and their caregivers in the Berlin region besides direct medical or therapeutic care and to identify barriers in the use of available support from the perspective of care experts. METHODS: A structured search of different sources, including an internet search, print information as well as interviews with experts and a group discussion, was conducted on support services available to lung cancer and stroke patients and their caregivers in Berlin for managing their altered health and life situation. Target groups of identified offers were verified and further information was gathered by a questionnaire. Further, barriers for utilization of support services were analyzed from conducted interviews and the group discussion with health care experts. RESULTS: A total of 150 support services were identified for lung cancer and stroke patients and their caregivers in Berlin. There were many different forms of such offers, including, but not limited to, providing information and counseling, helping with the organization and coordination of the new life situation as well as giving psychosocial support. Missing information or information that was not adjusted to the patients' education level about care entitlements, lack of knowledge about as well as spatial distance to facilities were stated as barriers for utilization. CONCLUSIONS: A variety of support services is available in Berlin for lung cancer and stroke patients and their caregivers regarding different needs that might arise from their altered health and living situation. Providing information on existing offers more broadly to the target group and improving local availability may optimize utilization of such services by patients.

Quality of Life of Patients with Head and Neck Cancer Receiving Cetuximab, Fluorouracil, Cisplatin Comparing to Cetuximab, Fluorouracil, Cisplatin, and Docetaxel within the CEFCID Trial.

INTRODUCTION: CeFCiD was a multicenter phase II study comparing the efficacy of cetuximab (C), 5-flourouracil, and cisplatin with the same regimen adding docetaxel (D) in recurrent/metastatic head and neck cancer. The primary analysis trial did not demonstrate survival benefit from therapy intensification in first-line recurrent and/or metastatic squamous cell carcinoma of the head and neck (SCCHN). The current analysis of the trial assessed the impact of treatment on quality of life (QoL). METHODS: The European Organization for Research and Treatment of Cancer Quality of life Questionnaire QLQ-C30 and the tumor-specific module for head and neck cancer (QLQ-H&N35) were used to assess QoL at baseline (visit 1), after 2 (visit 3), 4 (visit 5), and 6 (visit 7) cycles of chemotherapy. RESULTS: Of 180 patients included in this study, 86 patients (47.8%) completed the questionnaires at baseline. Considering selected scores over treatment time, there was no difference in global QoL, dyspnea, swallowing, and speech between the treatment arms in the course. For fatigue, a significant increase from baseline to visit 3 (p = 0.02), visit 5 (p = 0.002), and to visit 7 (p = 0.003) was observed for patients receiving D, cisplatin or carboplatin (P), 5-fluorouracil (F), and C. At the end of chemotherapy, the manifestation of fatigue was similar compared in the 2 treatment arms. DISCUSSION/CONCLUSION: Therapy intensification not adversely affects selected scores of QoL of patients with recurrent and/or metastatic SCCHN. Nevertheless, fatigue seems to be pronounced in patients treated with D.

What do people with lung cancer and stroke expect from patient navigation? A qualitative study in Germany.

OBJECTIVE: This qualitative study investigated patients' needs and wishes in relation to patient navigation. DESIGN: A qualitative interview study was conducted. Participants were invited to take part in three in-depth interviews over a period of 6-12 months. Thematic analysis was used. SETTING: Interviewees were sought in the Berlin metropolitan area of Germany in academic university hospitals, in rehabilitation clinics and through self-help organisations. PARTICIPANTS: The sample consisted of individuals diagnosed with lung cancer (n=20) or stroke (n=20). RESULTS: From the perspective of interviewees, patient navigators should function as consistent contact persons, present during the whole care trajectory. Their role would be to guide patients through an often confusing healthcare landscape, offering practical, advisory and emotional assistance corresponding to patients' needs. The study shows that-independent of the disease-participants had similar expectations and needs regarding support from navigators. CONCLUSION: For chronic and complex diseases-as is the case with lung cancer and stroke-it appears less important for navigators to fulfil disease-specific tasks. Rather, they should ensure that patients' more general needs, in relation to social, practical and emotional support, are met in a way that suits their individual wishes. Following these results, patient navigation programmes might be designed to include generic elements, which should then be adapted to the infrastructure in a particular healthcare region and to the particularities of a specific healthcare system.

Quality of life and treatment-related burden during ocular proton therapy: a prospective trial of 131 patients with uveal melanoma.

BACKGROUND: Proton beam therapy is a well-established treatment option for patients with uveal melanoma (UM). The treatment procedure, in general, includes placing radiopaque clips to ensure exact eye-positioning during radiotherapy, followed by the delivery of proton irradiation. The short-term burden associated with proton therapy in patients with UM has rarely been addressed. In this prospective study, we investigated the physiological and psychological aspects of proton therapy that might affect the well-being of patients during the different stages of treatment. METHODS: During the treatment procedure, we conducted longitudinal assessments of the Quality of life (QOL), organ-specific symptoms, and psychological aspects in patients with UM with three questionnaires (EORTC QLQ-C30, EORTC QLQ-OPT30, and GAD-7). Patients completed questionnaires before clip surgery (T0), before proton therapy (T1), after completing treatment (T2), and three months after treatment completion (T3). We also collected data on tumor characteristics and socio-demographics to identify potential risk factors associated with high treatment burdens. RESULTS: We prospectively included 131 consecutive patients. Questionnaire data showed a significant, temporary decline in global QOL and an increase in eye-related symptoms, as a result of the clip surgery (T0-T1). After treatment completion (T2), global QOL improved gradually, and none of the eye-related symptoms significantly deteriorated over the course of proton therapy. The global QOL returned to baseline levels three months after treatment (T3). We identified baseline anxiety as an independent risk factor for experiencing an acute treatment-related burden. Furthermore, we found interactions between GAD7 and patient sex showing that anxiety had a more pronounced effect on QOL outcome in female patients. CONCLUSION: The short-term treatment-related burden of ocular proton therapy appeared to be largely associated with the preceding clip surgery, rather than the irradiation procedure. We found that anxiety was strongly associated with experiencing QOL issues during the treatment procedure. Our findings could contribute to the development of future strategies for improving the treatment process and psycho-oncologic patient care.

Prognostic Awareness in Advanced Disease: A Review Update and Concept Analysis.

PURPOSE: Although subjective knowledge about the prognosis of an advanced disease is extremely important for coping and treatment planning, the concept of prognostic awareness (PA) remains inconsistently defined. The aims of the scoping review were to synthesize a definition of PA from the most recent literature, describe preconditions, correlates and consequences, and suggest a conceptual model. METHODS: By using scoping review methodology, we searched the Web of Science and PubMed databases, and included publications, reviews, meta-analyses or guidelines on all physical diagnoses, as well as publications offering a conceptual or an operational definition of PA. The data were analyzed by means of content analysis techniques. RESULTS: Of the 24 included publications, 21 referred exclusively to cancer, one to patients with hip fractures and two to palliative care in general. The deduced definition of PA comprised the following facets: adequate estimation of chances for recovery, knowledge of limited time to live, adequate estimation of life expectancy, knowledge of therapy goals, and knowledge of the course of the disease. Further content analysis results were mapped graphically and in a detailed table. CONCLUSION: There appears to be a lack of theoretical embedding of PA that in turn influences the methods used for empirical investigation. Drawing on a clear conceptual definition, longitudinal or experimental studies would be desirable.

Learning-by-doing: the importance of experiential knowledge sharing for meeting the information needs of people with colorectal cancer in Germany-a qualitative study.

OBJECTIVE: The aim of this article is to understand how, when and why the topics of information and information needs arise when people diagnosed with colorectal cancer (CRC) narrate their illness experiences. METHODS: Guided by principles of grounded theory, a qualitative interview study was conducted that collected a wide variety of illness experiences with CRC in Germany using maximum variation sampling. Sampling criteria included place of residence, age at interview, age at diagnosis, treatment, disease course and sociodemographic factors such as varying family backgrounds and professions. SETTING AND PARTICIPANTS: Men and women diagnosed with CRC in different parts of Germany were sought via physicians, social workers and psychologists in hospital settings, organisations offering psychosocial support for patients with cancer, self-help groups, rehabilitation centres, newspapers and personal contacts. The interviewees in the final sample (n=41) had been diagnosed with CRC between 4 weeks and 36 years prior to the interview. RESULTS: Three inter-related categories of information needs emerged from the analysis: the need for non-medical information for daily life; the challenge of integrating the bodily changes that accompany CRC in everyday life; and sources of non-medical information concerning handling daily life. Learning to live with the bodily changes of CRC in everyday life was described as a long process of learning-by-doing. While sources for medical information were clear, finding practical information was often a challenge. The best source of such information was often seen to be other people living with the disease, who shared their experiential knowledge, as well as stoma and nutritional therapists. CONCLUSION: Information needs are part of the process and struggle to normalise everyday life after a disruptive diagnosis and treatment. Providing access to practical knowledge and information from others with CRC experience may be an important resource for patient support.