Cancer patients' needs for virtues and physicians' characteristics in physician-patient communication: a survey among patient representatives.

BACKGROUND: Data on patients' needs with respect to physicians' ethical behavior and virtues are important but not available in most cases. PATIENTS AND METHODS: In an iterative process together with patients' representatives, we developed a standardized questionnaire which was distributed to the representatives of the Women's Self-Help after Cancer in Germany. We started with the classical ethical virtues and clustered them to characteristics. The patients' representatives were asked to rate in different communications settings. RESULTS: One hundred eighty-six patients' representatives took part in the survey. For four communication situations (first communication on symptoms, diagnosis of cancer, choice of therapy, doubts on therapy), competence was rated as very important by 80-89% and as important by 6-7%; honesty as very important by 78-89% and as important by 5-12%; respect as very important by 66-71% and as important by 19-21%; and patience as very important by 55-68% and as important by 6-24%. Compassion was rated as less important, with only 24-31% rating it as very important and another 26-32% as important. Additional desires expressed by the participants were physicians having more time (9.1%) and a better relationship between physician and patient (7.0%). CONCLUSION: Competence, honesty, respect, and patience are important characteristics which should be focused on in communication training of medical students and physicians. In spite of compassion being rated as less important, training on compassion/empathy might help doctors to improve coping with the continuous confrontation with complications, progress, suffering, and death of their patients.

A lecture program on complementary and alternative medicine for cancer patients--evaluation of the pilot phase.

About half of all patients with cancer use complementary or alternative medicine (CAM). In 2013, we started a lecture program for patients, followed by evidence-based recommendations on counseling on CAM. These recommendations have been published before by this working group. The aim of the program is to provide scientific facts on the most often used CAM methods in standardized presentations which help patients discuss the topic with their oncologists and support shared decision making. The article presents the evaluation of the pilot phase. Participants received a standardized questionnaire before the start of the lecture. The questionnaire comprises four parts: demographic data, data concerning experience with CAM, satisfaction with the lecture, and needs for further information on CAM. In 2013, seven lectures on CAM were given in cooperation with regional branches of the German Cancer Society in several German states. Four hundred sixty patients and relatives took part (75% females and 16% males). Forty-eight percent formerly had used CAM. Most often named sources of information on CAM were print media (48%) and the Internet (37%). Most participants rated additional written information valuable. About one third would like to have an individual consultation concerning CAM. A standardized presentation of evidence on CAM methods most often used, together with recommendations on the self-management of symptoms, is highly appreciated. The concept of a highly interactive lecture comprising is feasible and if presented in lay terminology, adequate. In order to give additional support on the topic, written information should be provided as the first step.

Integrating cancer patients' perspectives into treatment decisions and treatment evaluation using patient-reported outcomes--a concept paper.

Patient-reported outcomes are an important tool in clinical research. In the setting of cancer treatments, benefit of therapy is essentially characterised by improvement of survival as well as quality of life (QoL). A standardised instrument to assess QoL is the standardised QoL questionnaire of the European Organisation for Research and Treatment (EORTC QLQ-C30 questionnaire). QoL instruments provide data on different aspects (domains) of the framework of QoL. Using these questionnaires in studies provides data on how a treatment affects QoL in a group of patients. The goal of our concept is to individualise QoL and to use validated instruments in order to integrate patients' perspectives and aims into treatment assessment, planning and control. We propose to use the domains of the EORTC QLQ-C30 and to ask the patient to determine which objectives besides survival are relevant for him and should be achieved by treatment. These individual goals can be used in a process of shared decision-making to choose and monitor treatment. In clinical studies, this approach would allow to recruit more patients who would most probably benefit from the therapy. In addition, supportive data could be gathered in correlation to treatment goals and actual benefits.

Attitude of employees of a university clinic to complementary and alternative medicine in oncology.

BACKGROUND: Cancer patients often use complementary and alternative medicine (CAM), yet discussion with the oncologist is often missing and oncologists lack knowledge in CAM. PATIENTS AND METHODS: In order to learn more about the attitude of professionals in oncology toward CAM, a survey was conducted on employees of a German university clinic using a structured questionnaire. RESULTS: In total, 547 employees took part in the survey. One-third would definitely use CAM on cancer patients. Female employees are more interested in CAM than males (80% versus 20%; P = 0.001); physicians are less interested than nurses (57% versus 72%; P = 0.008). 2.5% of physicians and 9% of nurses are convinced that CAM is as effective as conventional therapy in cancer. Fifty-two percent of physicians and 12% of nurses agree that adverse effects due to CAM may be possible. Seventy-three percent did not consider themselves adequately informed on CAM for their professional work. CONCLUSIONS: As a substantial part of participants would use CAM on cancer patients and most are interested in but not trained on this topic, there is a need for training of professionals from different professions working in oncology.

Counseling cancer patients on complementary and alternative medicine. Background, theory, and implementation of nationwide counseling facilities.

BACKGROUND AND PURPOSE: Complementary and alternative medicine (CAM) is of high relevance in oncology. Only a minority of professionals feel competent in CAM. Our aim was to provide a strategy for establishing evidence-based counseling on CAM in oncology in the German health system. METHODS: We performed a systematic search of the literature on patient counseling concerning CAM. Of 811 articles identified in this search 51 met our inclusion criteria. Data from these articles were analyzed and adapted to the needs of German patients by a group of experts of the DEGRO ("Deutschen Gesellschaft für Radioonkologie") and the German Cancer Society. In the next step a strategy about how to integrate evidence-based counseling on CAM at cancer centers and oncological institutions was developed. RESULTS: First, evidence-based recommendations on CAM counseling were derived. The core of our strategy combines two levels of information provision: level 1 will be oncologists, radiotherapists and other specialists and level 2 oncological CAM experts. The latter group will serve as trainers and backup for complicated or advanced questions and for individual counseling of patients with complex needs. Professionals in level 1 will be offered special training. CONCLUSION: Evidence-based counseling on CAM is not only possible but also mandatory in order to meet patient information needs. Our proposal would allow for integrated counseling available at all oncological institutions and guarantee a high quality. Furthermore, provision of information on two different levels allows the effective use of resources (manpower and financing).

[Complementary or alternative medicine in oncology : Chances or risks?] / Komplementäre oder alternative Medizin in der Onkologie : Chancen oder Risiken?

BACKGROUND: Approximately half of all cancer patients use complementary or alternative medicine. AIM: The results of the German S3 guidelines on complementary oncology are presented and placed into the context of patient consultation. MATERIAL AND METHODS: The core recommendations of the S3 guidelines are summarized including an overview of the evidence. RESULTS: Selected methods of complementary medicine can be used with the aim of improving the quality of life and reducing side effects. Comprehensive data are available for physical activity with respect to survival, quality of life and supportive therapy. For most other methods the evidence is relatively low. Therefore, weighing up the benefits and risks more frequently resulted in negative recommendations in the guidelines, especially for methods based on substances. Exceptions to this are three micronutrients (vitamins B12, D and selenium), as even in the case of a well-balanced diet, deficiency symptoms are possible. Therefore, routine measurement of the blood levels of these micronutrients is recommended. CONCLUSION: The questions from patients on what they can do by themselves should be answered respectfully and based on evidence. The benefits and risks of complementary methods must be carefully considered. To do this, regular questioning of patients on the interest in complementary methods is recommended. The decisive benefit of complementary medicine is the chance for patients to become active themselves. Therefore, all recommendations refer to the discussion with the patient, which do not formulate a therapy but are consultation recommendations: should be recommended instead of should be done.

Lay etiology concepts of cancer patients do not correlate with their usage of complementary and/or alternative medicine.

BACKGROUND: The usage of complementary and alternative medicine (CAM) is widespread among cancer patients. While reasons for and aims of using CAM have been evaluated in many studies, less is known about whether patients' concepts of how and why cancer develops has an influence on the choice of the CAM method. METHODS: We pooled the data from all studies of our working group containing questions on lay etiological concepts and CAM usage and reanalyzed them with respect to the associations between these parameters. RESULTS: The pooled dataset from 12 studies included 4792 patients. A third (1645 patients) reported using CAM. Most often used were supplements (55.9%), relaxation techniques (43.6%), and homeopathy (37.9%). Regarding perceived causes, patients most often marked stress (35.4%) followed by genes (31.9%). While all lay etiological beliefs were highly significantly associated with usage of CAM in general, there was no association between single lay etiological concepts and types of CAM used. Yet, in a network analysis, we found two associations: one comprising trauma, mistletoe, genes, and nutritional supplements, the other yoga, vitamin C, nutritional supplements, and TCM herbs. In the correlation heatmap, one cluster comprises etiological concepts of personality, immune system and trauma, and two clusters of CAM methods emerged: one comprising praying, yoga, meditation, and relaxation procedures, the other nutritional supplements, selenium, vitamins A and C. CONCLUSION: While physicians are trained to derive treatment strategies from etiological concepts, lay people choosing CAM do not follow these rules, which may point to other needs of patients addressed by CAM.

Resilience in cancer patients and how it correlates with demographics, psychological factors, and lifestyle.

BACKGROUND: Being diagnosed with cancer is challenging. Many patients wish to be actively involved in treatment and contribute to therapy, but the patients' coping abilities and desire for involvement differ. The individual level of resilience seems to play a major role. Our study aims to learn more about the associations of resilience and factors as demographics and psychological factors. METHODS: This multicentric cross-sectional study was conducted in ten oncological centers in Germany in summer 2021. The questionnaire collected information on demographics, resilience, self-efficacy, general satisfaction with life, and sense of coherence. Considered lifestyle-aspects were diet and physical activity. 416 patients were included in the analyses. RESULTS: A moderate mean resilience score was achieved (M = 69). Significant correlations in demographics were found for resilience and education (r = 0.146, p = 0.003), income (r = 0.205, p = 0.001), and time since receiving diagnosis (r = - 0.115, p = 0.021). Resilience and self-efficacy correlated on a high level (r = 0.595, p < 0.001), resilience and sense of coherence, and resilience and general satisfaction with life in a moderate way (r = 0.339, p < 0.001; r = 0.461, p = 0.001). CONCLUSIONS: Resilience portrays an important aspect in cancer treatment. Detecting patients at risk, stabilizing, or improving resilience are important to focus on and strengthen them accordingly. Possible negatively influencing factors (e.g., low self-efficacy) need to be considered. Factors affecting resilience but difficult to influence, as educational background, should be screened for. Also, the combination of low resilience and low income seems to describe a vulnerable patient group.

Sense of coherence and its context with demographics, psychological aspects, lifestyle, complementary and alternative medicine and lay aetiology.

PURPOSE: For patients with a cancer diagnosis, coping abilities are of high importance. Cancer patients with a high sense of coherence may cope better. The purpose of this study is to learn more about the correlation of sense of coherence and different aspects, such as demographics, psychological factors, lifestyle, complementary and alternative medicine (CAM) and lay aetiology. METHODS: A prospective cross-sectional study was performed in ten cancer centres in Germany. The questionnaire consisted of ten sub-items, collecting information about sense of coherence, demographics, general life satisfaction, resilience, spirituality, self-efficacy, physical activity and sports, nutrition, CAM methods and cancer causes. RESULTS: As many as 349 participants were evaluable. The mean sense of coherence score was M = 47.30. Significant associations were shown for sense of coherence and financial situation (r = 0.230, p < 0.001), level of education (r = 0.187, p < 0.001), marital status (η = 0.177, p = 0.026) and time interval since diagnosis (r = - 0.109, p = 0.045). Sense of coherence and resilience correlated on a high level, as well as spirituality, self-efficacy and general life satisfaction (r = 0.563, r = 0.432, r = 0.461, r = 0.306, p's < 0.001). CONCLUSION: Several aspects, such as demographics and psychological factors, have a great influence on the sense of coherence. To help patients to cope better, physicians should try to strengthen sense of coherence, resilience and self-efficacy and, at the same time, consider patients' individual background such as level of education, financial capacity and emotional support by family members.

[Radiochemotherapy for invasive bladder cancer : An update]. / Radiochemotherapie beim Harnblasenkarzinom : Ein Update.

BACKGROUND: The standard treatment for muscle-invasive bladder cancer is radical cystectomy with pelvic lymphadenectomy. Primary organ-preservation by means of multimodal therapy, however, can be a viable alternative to radical surgery. OBJECTIVES: The concept and results of multimodal therapy, consisting of initial transurethral resection of the bladder tumor (TUR-B), followed by simultaneous radiochemotherapy (RCT), are presented. MATERIALS AND METHODS: Evaluation of retrospective cohorts and prospective therapy optimization studies on organ-preservation treatment regimens. Comparative meta-analyses comparing cystectomy with multimodal treatment are presented. RESULTS: Complete TUR-B, including bladder mapping and tumor biopsy, should precede simultaneous RCT. Radiosensitization should be cisplatin-based or consist of a combination of 5­fluorouracil and mitomycin C. Complete response rates after TUR-B plus RCT are generated in 60-90% of patients along with 5­year survival rates of 40-75% and preservation of the bladder in approximately 80% of surviving patients. CONCLUSIONS: Multimodal therapy by means of TUR-B followed by simultaneous RCT is a viable alternative to radical cystectomy for patients with muscle-invasive urinary bladder carcinoma. Patients with early tumors (cT2/3N0) are particularly suitable in whom initial TUR-B leads to complete tumor resection (R0).

Prostate cancer patients' report on communication about endocrine therapy and its association with adherence.

BACKGROUND: Endocrine therapy is a mainstay of prostate cancer therapy. Given that few data exist on patient physician communication with regard to this field of therapy and adherence, we conducted a survey of patient members of a German support organization. PATIENTS AND METHODS: We developed a structured questionnaire that was tested in a pilot version and then programmed as an online questionnaire. RESULTS: The questionnaire was completed by 694 patients. While 58 % of participants rated the information they received as comprehensive, 42 % did not. Fifty-one percentage stated that they were informed of side effects in detail, and 35 % received information on supportive treatments available in the event of side effects. Patients with higher education more often reported receiving information on side effects (p = 0.036) as well as alternatives for treatment (p = 0.001). Only 13 % stated that their questions were answered in detail, with 43 % receiving no answers or only non-detailed answers. Additional information was sought by 82 %, mostly from the Internet (67 %) and patient support groups (66 %). Seventy-six percentage experienced side effects that imposed limitations on their daily activities. Of those patients with side effects, 60 % reported that their physicians did not react to their complaints. There is a significant association between side effects in general and depression in particular and non-adherence (p < 0.01 and p = 0.002, respectively). In contrast, better information on side effects is associated with better adherence (p < 0001). CONCLUSION: In order to improve adherence, detailed information on side effects and comprehensive supportive care is most important. Physicians should not rely on written information but should rather mainly engage in direct communication.

Use of complementary and alternative medicine by patients with cancer: a cross-sectional study at different points of cancer care.

Complementary and alternative medicine (CAM) is widely used by cancer patients. In order to learn more on the usage of CAM, its reasons and motifs as well as sources of information along the trajectory of treatment, we decided to evaluate the prevalence and predictors for the use of CAM by cancer patients while being under active treatment with chemo- or radiotherapy or in aftercare. We distributed a standardized questionnaire among patients attending a department of radio-oncology, an ambulance for oncology and offices of general practitioners (GPs). Five hundred and six patients took part. Most attributed cancer to stress and trauma (23.7 and 16.4 %) or genes (20.8 %). Forty-four percentage reported knowing a physician with competence in CAM, and in all settings, most patients named the GP. Fifty-one percentage admitted using CAM, 35 % informed the oncologist about using CAM, 56 % informed the GP, and 26 % did not inform any physician. Most often used CAM was vitamin D (17 %) and selenium (16 %). Most important goals were to strengthen the immune system (59 %) and become active (52 %). Most patients were satisfied with the CAM methods they used. Yet, with some methods, dissatisfaction was up to 30 %. The GP has an important function concerning CAM in oncology as most patients believe the GP to have best knowledge in CAM. In order to integrate complementary medicine into evidence-based medicine, physicians should be trained on how to communicate on CAM with the patient and with each other. Explaining cancer and cancer therapies in a way lay persons are able to understand may be helpful. Physicians should actively address patients' needs of involvement not only in decision making, but also actively in the therapy.

High cure rates and reduced long-term toxicity in pediatric Hodgkin's disease: the German-Austrian multicenter trial DAL-HD-90. The German-Austrian Pediatric Hodgkin's Disease Study Group.

PURPOSE: To further reduce therapy-related late effects in patients with pediatric Hodgkin's disease (HD) while maintaining the high cure rates achieved with vincristine, prednisone, procarbazine, and doxorubicin (OPPA) or OPPA/cyclophosphamide, vincristine, prednisone, and procarbazine (COPP) chemotherapy and involved-field radiotherapy. The risk of testicular dysfunction was addressed by substituting etoposide for procarbazine (OEPA) in the induction therapy for boys. Radiation doses and fields were further reduced. PATIENTS AND METHODS: Three hundred nineteen boys and 259 girls younger than 18 years with previously untreated HD, enrolled onto the study between 1990 and 1995, were allocated to treatment group (TG)1 (early stages), TG2 (intermediate stages), or TG3 (advanced stages). All groups underwent two cycles of OEPA (boys) or OPPA (girls) for induction chemotherapy. TG2 and TG3 continued on additional two or four cycles, respectively, of COPP. Low-dose radiotherapy was given to the initially involved sites, ie, reduced involved fields. RESULTS: Initial response to OPPA or OEPA induction was virtually identical. Eight of 578 patients experienced early progression of HD. Thirty-seven relapses, three secondary tumors, and no secondary leukemias have been recorded, with a median follow-up duration of 5.1 years (maximum, 8.1 years). Thirteen of 578 patients died. The probability of 5-year event-free survival/overall survival is 91%/98% in the total group, 94%/97% with OPPA, and 89%/98% with OEPA induction therapy. Risk factor analysis showed two significant prognostic factors: histologic subtype NS2 and "B" symptoms. OEPA induction therapy, large mediastinal tumor, and age were not significant. Preliminary studies of testicular function indicate a lower risk of germ cell damage than previously documented with OPPA. CONCLUSION: OEPA is a satisfactory alternative to OPPA. Radiotherapy can be confined to involved sites when combined with appropriate chemotherapy. The DAL-HD-90 regimen represents a comprehensive treatment program for all stages of pediatric HD and offers a favorable benefit/risk ratio, combining excellent disease control, moderate acute toxicity, and reduced long-term toxicity.

Irradiation induces increase of adhesion molecules and accumulation of beta2-integrin-expressing cells in humans.

PURPOSE: The purpose of our investigation was to describe the dose- and time-dependent histomorphologic alterations of the irradiated tissue, the composition of the infiltrate, and the expression patterns of various adhesion molecules. METHODS AND MATERIALS: We analyzed immunohistochemically alterations in oral mucosa in 13 head and neck cancer patients before radiotherapy and with 30 Gy and 60 Gy. All had oral mucosa irradiation, with a final dose of 60 Gy using conventional fractionation. Snap-frozen specimens were stained using the indirect immunperoxidase technique. Histomorphology was studied in paraffin-embedded sections. In addition, we determined the clinical degree of oral mucositis. RESULTS: Histomorphologic evaluation showed no vascular damage. Irradiation caused a steep increase of beta2-integrin-bearing cells (p < 0.01), whereas the percentage of beta1-integrin-positive cells remained at low levels. Additionally we found an increase in the expression of endothelial intercellular adhesion molecule-1 (ICAM-1) (p < 0.01) and E-selectin (p < 0.05), while endothelial vascular cell adhesion molecule-1 (VCAM-1) expression remained at very low levels. CONCLUSION: Our findings indicate that in radiation-induced oral mucositis there is no marked vascular damage until the end of radiotherapy. For recruitment of leukocytes, beta2 is more involved than beta1. Pharmaceuticals that block leukocyte adhesion to E-selectin or ICAM-1 may prevent radiation-mediated inflammation in oral mucosa.

Comparison of imaging accuracy at different MRI units based on phantom measurements.

In this investigation standardized on-site phantom measurements at 27 MRI units were carried out. A scoring system was developed for rating both symmetry and distortion of the image. This study shows, with regard to the clinical use of MRI-assisted treatment planning in radiotherapy, that in more than 85% of all planes (transversal, sagittal, coronal) the MRI units were equivalent to the standard known from literature.

European results of neutron therapy in soft tissue sarcomas.

The purpose of this publication is to review the data of European neutron therapy facilities in the treatment of soft tissue sarcoma. In the past locally advanced soft tissue sarcoma was a common indication for neutron therapy in several European centers. Data from 1171 patients treated at 11 centers were analysed on the basis of published data or personal communication. Neutron therapy was of benefit especially for patients with primary radiotherapy of inoperable tumors, and with macroscopic disease after surgery. Local control was about 50% in these patients. These results are superior to those from photon therapy from the literature. Results for postoperative neutron therapy after R0- and R1-resection are similar to those from photon therapy. The incidence of late side effects was considerably high in some neutron series. This is influenced by the treatment of most patients with first-generation machines of limited technical standard, and that in most cases large treatment volumes were irradiated.

Neutron therapy in malignant salivary gland tumors: results at European centers.

Malignant salivary gland tumors are relatively rare and account for only 3%-4% of all head and neck cancers. Especially in adenoid cystic carcinoma, the incidence of local recurrence and distant metastases is influenced by the perineural spread of tumor. In advanced salivary gland tumors, surgery alone has a high incidence of local failure. The results of conventional radiotherapy are suboptimal in inoperable or not completely resected salivary gland tumors and in recurrent disease. The pooled data of some international series for low linear energy transfer radiation show a local control of only 28%. Especially in advanced salivary gland tumors, neutron therapy can improve local control. In Europe at least 570 patients with salivary gland tumors have been treated with neutrons alone or with combined modalities. The clinical data of different centers in Europe and the United States result in a similar local control rate of 67% in gross disease. An analysis of different European series shows on average a complication rate of 10.6% for severe radiation-related morbidity. Modern neutron machines and the use of three-dimensional treatment planning systems are now available in a few institutions and may further reduce side effects.

Use of neutron therapy in the management of locally advanced nonresectable primary or recurrent rectal cancer.

Inoperable locally advanced or inoperable recurrent rectal cancer is a difficult problem. Tenesmus, discharge, bleeding and pelvic pain are frequently present and often are associated with infiltration of the sacral plexus. The value of radiotherapy in managing such patients is being appreciated, although up to 40% of the treated patients have no symptomatic response. Improvement in tumor response and control has been scored through efforts to overcome the radio resistance of the hypoxic tumor cells by neutron irradiation. This article is an account of the activity of neutron radiotherapy in such patients. Over 350 patients were entered in studies comparing neutrons used alone and neutrons used in a mixed-beam treatment schedule. At present no therapeutic gain for long-lasting survival has been achieved; however, local control and pain improvement seems to be better with neutrons than with photons.

Amifostine: a radioprotector in locally advanced head and neck tumors.

Patients with locally advanced head and neck tumors were treated +/-amifostine (200 mg/m2, i.v.) before radiotherapy (5x 2 Gy, for 6 weeks). A significant decrease in side effects (p=0.034) using the oral assessment score and duration of mucositis (p=0.02) in the amifostine group was observed. Amifostine is feasible and effective, decreasing acute and late side effects in patients with head and neck tumors.

Possible synergy of radiotherapy and chemo-immunotherapy in metastatic renal cell carcinoma (RCC).

PURPOSE: Bone metastases or local recurrences are widely viewed as poor prognostic signs for successful immunotherapy for metastatic renal cell carcinoma (RCC), and even partial remission is a rarity. We assessed the efficacy of the combination of radio and chemo-immunotherapy for bone metastases or local recurrences form RCC. MATERIALS AND METHODS: From February 1994 until September 1997 twelve patients with progressive renal cell carcinoma (9 with bone metastases and 3 with local recurrence) were treated with a combination of chemo-immunotherapy and radio therapy. RESULTS: Four out of twelve patients achieved complete remission (CR), one patient had a partial remission (PR), three were stable and four had disease progression under radio therapy and chemo-immunotherapy. Yet three pts. died of the disease. The toxicity symptoms according to WHO ranged between grade 2 and grade 3. CONCLUSION: Our data suggest that the combination of radio therapy and chemo-immunotherapy may induce a synergistic antitumor effect for the treatment of bone metastases or local recurrences from renal cell carcinoma.