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Sleep disorders are prevalent among patients with cancer and their caregivers as well, affecting their quality of life. But the relationship between sleep quality, dream experiences, and life satisfaction in patients with cancer and their partners is understudied. The present research aimed to quantitatively investigate the dream experiences of oncology patients and explore the interdependence between patients and their partners in terms of dream experiences and life satisfaction. Therefore, a cross-sectional study was conducted with 101 dyads, completing a questionnaire assessing demographic and illness-related data, dream experiences, sleep quality, and life satisfaction. Inferential statistical tests and actor-partner interdependence models were used to analyse the data. Both patients with cancer and their partners reported on average a significant decrease in sleep quality since the cancer diagnosis and for both dyad members significant dreaming predictors for life satisfaction were found. Namely, a positive association for dream stability in patients, and a positive association for positive dream affect as well as a negative association for negative dream affect in partners. Regarding the question of interdependence, dream intensity exhibited a significant group-specific partner effect, but no overall partner effect, leading to inconclusive results that call for more studies in this field. The study suggests that dreaming may affect life satisfaction beyond sleep quality and underscores the significance of acknowledging dream experiences as potential influencers of quality of life in patients with cancer. Additionally, the study stands out for its examination of the role of partners in dyadic dependency, emphasising the importance of understanding their influence on patients' experiences.
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Sonhos , Neoplasias , Satisfação Pessoal , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Neoplasias/psicologia , Feminino , Masculino , Estudos Transversais , Sonhos/fisiologia , Sonhos/psicologia , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Qualidade do Sono , Idoso , Cuidadores/psicologia , Cônjuges/psicologiaRESUMO
PURPOSE: Curcumin, the active ingredient in turmeric, is employed by numerous cancer patients to support conventional cancer therapy. This systematic review aims to summarize the existing clinical evidence and to provide an overview of the potential benefits and risks associated with curcumin supplementation. METHODS: In January 2024, we conducted a systematic search of five electronic databases (Embase, Cochrane, PsycInfo, CINAHL, and Medline) using a complex search strategy. We included randomized controlled trials on the use, effectiveness, and potential harm of additional curcumin therapy in adult patients under cancer treatment. The risk of bias was assessed using Cochrane revised Risk of Bias Tool 2.0. RESULTS: This systematic review included 34 randomized controlled trials involving 2580 patients out of 11143 search results. Included patients were primarily diagnosed with head and neck cancer, followed by breast, prostate, and colorectal cancer. Therapy concepts encompassed topical or systemic curcumin administration. The studies reported heterogeneous results concerning oral and skin symptoms, pain, weight alteration and changes in body composition, survival, and disease progression. Significant findings were reported for oral mucositis and weight loss. Considering risk of bias, all studies had moderate to high risk of bias. Regarding side effects, one study reported significantly more vomiting in the curcumin group. CONCLUSION: Although the results suggest promise in reducing mucositis and weight loss, a clear statement regarding the effectiveness of curcumin therapy on cancer patients cannot be made due to heterogeneous results and methodological limitations of the involved studies. Further investigations of higher quality are necessary to derive a definite recommendation for action.
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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.
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Letramento em Saúde , Internet , Neoplasias , Humanos , Neoplasias/terapia , Feminino , Masculino , Letramento em Saúde/estatística & dados numéricos , Pessoa de Meia-Idade , Bases de Dados Factuais , Adulto , Idoso , Educação de Pacientes como Assunto/métodos , Inquéritos e Questionários , Medicina Baseada em Evidências/métodosRESUMO
BACKGROUND: This study focused on Ukrainian refugees and migrants, a population that, with an ongoing war, is expected to grow in Germany. Over 1 million Ukrainians with exceptional legal status and access to public insurance in Germany significantly burden governmental services, especially German healthcare. It is thus essential to facilitate their integration into the healthcare system and ensure its proper usage. Identifying the obstacles Ukrainian refugees and migrants encounter while accessing healthcare services is crucial to ease their integration. METHODS: A qualitative study was conducted from February 2023 to April 2023. Thirty semi-structured interviews were performed with Ukrainian migrants and refugees. The interviews were transcribed verbatim, organized, and categorized. Thematic analysis was performed to identify barriers related to the use of German healthcare services. To assess possible differences in the experiences of Ukrainian refugees and migrants, the responses of these two groups for each topic were analysed separately. RESULTS: Ukrainian migrants and refugees experience similar barriers while accessing German healthcare services. Predominantly, language barriers and a lack of understanding of the German healthcare system posed the main barriers in both groups. Additionally, structural challenges, such as differences in referral processes, appointment scheduling, and consultation duration, presented further challenges. CONCLUSION: This research study emphasizes the importance of addressing cultural and structural barriers to improve healthcare accessibility and utilization for Ukrainian refugees and migrants in Germany to better facilitate their integration into the healthcare system.
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Barreiras de Comunicação , Acessibilidade aos Serviços de Saúde , Pesquisa Qualitativa , Refugiados , Migrantes , Humanos , Refugiados/estatística & dados numéricos , Refugiados/psicologia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Ucrânia , Alemanha , Feminino , Masculino , Migrantes/estatística & dados numéricos , Migrantes/psicologia , Adulto , Pessoa de Meia-Idade , Entrevistas como AssuntoRESUMO
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 .
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COVID-19 , Neoplasias , Criança , Feminino , Humanos , Controle de Doenças Transmissíveis , COVID-19/epidemiologia , Neoplasias/epidemiologia , Neoplasias/terapia , Pandemias , Aceitação pelo Paciente de Cuidados de SaúdeRESUMO
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.
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COVID-19 , Qualidade de Vida , Humanos , Controle de Doenças Transmissíveis , Psicoterapia , ComunicaçãoRESUMO
BACKGROUND: Previous studies have already shown that decision aids are a suitable tool for patient decision-making. The aim of this work is to conduct an online search for freely available, German-language patient decision aids (PDAs) for cancer patients, followed by an assessment of their quality. For this purpose, a rating tool that is as manageable as possible was developed on the basis of already existing quality criteria. METHODS: A simulated patient online search was conducted via the four most frequently used search engines in Germany. A quality assessment tool was created utilizing international and national guidelines, with a focus on practicality and manageability. Subsequently, the identified PDAs were rated by 4 raters based on the rating tool. RESULTS: The number of German-language oncology PDAs is low (n = 22 of 200 URLs) with limited variability regarding rare cancers. Most originate from non-profit organizations. The overall quality is low, as indicated by an average of 57.52% of the maximum evaluation points of the developed quality assessment tool. Reference values used to assess quality were related to e.g. support/effectiveness, adaptation, layout, etc. No qualitative differences were found regarding different publishers. Quality differed between PDAs of different length, with longer PDAs achieving better results. CONCLUSION: Overall, the supply and quality of German-language PDAs is not satisfactory. The assessment tool created in this study provides a solid, but more manageable basis, for developing and identifying high-quality PDAs. PRACTICE IMPLICATIONS: PDAs should be increasingly used by physicians in practice. For this, a quick qualitative assessment of PDAs in everyday life must be possible. Future research has to investigate especially the aspect of the length of a PDA in more detail.
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Internet , Oncologia , Humanos , Alemanha , Idioma , Técnicas de Apoio para a DecisãoRESUMO
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.
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Pacientes Internados , Pacientes Ambulatoriais , Humanos , Satisfação do Paciente , Psicometria/métodos , Reprodutibilidade dos Testes , Alemanha , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Germany's new medical licensure act has increased the importance of general practice in academic medical education. This study gives an overview of complementary and alternative medicine in general teaching practices in Germany and their adherence to evidence-based criteria which is required in order to qualify as a teaching practice. METHODS: After a systematic search for German teaching practices, we assessed their diagnostic and therapeutic offers via their websites. We calculated the various frequencies of treatments and differentiated between evidence-based complementary medicine and alternative medicine with little to no evidence. RESULTS: Of 4102 practices, more than half offered complementary and/or alternative treatment. Most of those were treatments approved of by the German medical association. Alternative medicine was offered by 18.2% of the practices. CONCLUSION: Collective terms and conflicting evidence complicate the classification of treatments. Teaching practices offering non-evidence-based treatment raise the question whether recruitment of additional teaching practices stands at odds with the quality of medical education. Explicit offers of alternative treatment should disqualify a teaching practice as such. Controversial treatment may be taught academically and during residency with a focus on evidence-based guidelines and communication skills in order to prepare young medical practitioners for talks with their patients about the subject.
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Terapias Complementares , Educação Médica , Medicina Geral , Humanos , Terapias Complementares/educação , Educação Médica/legislação & jurisprudência , Medicina Baseada em Evidências/educação , Medicina Geral/educação , Medicina Geral/legislação & jurisprudência , Alemanha , EnsinoRESUMO
The interest of patients with chronic pain in complementary and alternative medicine (CAM) is high. The aim of an accompanying complementary therapy is to strengthen the patient's self-efficacy, the ability to make decisions and the autonomy. The best evidence exists for physical activity and a balanced diet. Exercise combinations of strength and endurance as well as targeted strengthening of the muscles in the area of the pain are particularly suitable. When choosing the form of exercise, low-threshold training options are recommended. There is no reliable evidence for kinesio taping, homeopathy, neural therapy and draining procedures. The extensive data on acupuncture must be interpreted taking methodological limitations into account. Heat applications can support multimodal pain therapy. In the case of anti-inflammatory phytotherapeutic agents, there are good rationales from basic research and reliable empirical knowledge regarding the dosage. The evidence on cannabis is low.
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Terapia por Acupuntura , Dor Crônica , Terapias Complementares , Homeopatia , Humanos , Dor Crônica/terapia , Terapias Complementares/métodos , Homeopatia/métodos , Terapia por Acupuntura/métodosRESUMO
Patients affected from hearing loss face many problems when visiting oncologists. We conducted a systematic review to survey if cancer education programs can promote health literacy among deaf and hard of hearing (DHH) patients. The authors searched two databases for RCTs, and cohort studies with interventions promoting cancer health literacy for adult DHH patients. Risk of bias was assessed with SIGN Methodology Checklist for RCTs, and cohort studies. Significance of mean changes over time, and mean differences between comparison groups were used to present outcomes of each study. Surveyed interventions addressed three domains: cancer knowledge, coping skills, and cancer screening. Key information was gathered and synthesized providing a juxtaposition of the content and presenting important effects in detail. Nine RCTs and seven cohorts with 1865 participants were included. In total, 13 studies showed that cancer health literacy interventions improved mean scores significantly from pre- to post-test measures. There are hints that captioning and written texts may be sufficient for milder forms of hearing loss. Three studies showed that resiliency skill training promotes various domains of well-being. Three studies indicated that educational interventions encourage cancer screening practices. Educational programs are an effective way to promote cancer health literacy among DHH patients to facilitate communication with oncologists. As extent of hearing loss was not assessed, the authors cannot say the degree to which results are applicable to all degrees of hearing loss. To obtain hard data, further studies with more diverse populations, various cancer entities, different methods, and exact hearing loss assessments are required.
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Surdez , Letramento em Saúde , Neoplasias , Pessoas com Deficiência Auditiva , Humanos , Promoção da Saúde , Neoplasias/prevenção & controleRESUMO
No specific quality criteria yet exist for question prompt lists (QPLs), so this study aims to develop a quality assessment tool to then use for an evaluation of online-available QPLs. An online search was conducted for German-language QPLs using different internet search engines and terms. A wide range of existing quality criteria for patient information was adapted to the field of QPLs to build an assessment tool and evaluate all identified QPLs by four independent raters. All new quality criteria were applicable to QPLs. The overall quality of 46 oncological QPLs was low, though the tool's subcategories were mostly fulfilled to over 80% by at least one QPL. For-profit organizations published lesser quality than medical organizations. The quality of breast- and prostate-cancer-specific QPLs was higher than that of general ones. High-quality QPLs could be created if more aspects were taken into account, but the available QPLs only focus on few quality aspects. The ambiguous results of effectiveness studies to date may be a result of vastly differing quality of the QPLs used for the interventions. The criteria provided in this study present a solid basis to assess the quality of QPLs. The creation of future QPLs as well as effectiveness studies should be more firmly based on quality criteria.
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Relações Médico-Paciente , Neoplasias da Próstata , Masculino , Humanos , Inquéritos e Questionários , Comunicação , Participação do PacienteRESUMO
The term vitamin E describes tocopherols and tocotrienols, whose chemical variations result in different biological activities including antioxidants. Neuroprotective effects of alpha-tocopherol against different toxins are assumed, therefore, it is discussed as a possible protective factor for adverse effects in cancer treatment. In July 2020, a systematic search was conducted searching five databases (Embase, Cochrane, PsychInfo, Cinahl, Medline) to find studies concerning the impact of α-tocopherol application and its potential harm on cancer patients. From 7546 search results, 22 publications referring to 20 studies with 1941 patients were included. Included patients were diagnosed with various cancer types and stages. Outcome variables were overall survival of cancer, symptom management of mucositis and chemotherapy-induced peripheral neuropathy (CIPN). The studies had different methodological qualities (mainly acceptable) and reported heterogeneous results: some reported significant improvement of mucositis and CIPN while others did not find changes concerning these endpoints. Due to heterogeneous results and methodical limitations of the included studies, a clear statement regarding the effectiveness of α-tocopherol as complementary treatment for cancer patients is not possible. Despite findings regarding reduction of oral side effects, usage of α-tocopherol during therapy must be discouraged because of potential negative influence on survival rates.
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Mucosite , Neoplasias , Tocotrienóis , Antioxidantes/farmacologia , Antioxidantes/uso terapêutico , Humanos , Mucosite/tratamento farmacológico , Neoplasias/tratamento farmacológico , Isoformas de Proteínas , Tocotrienóis/farmacologia , Vitamina E/farmacologia , alfa-Tocoferol/uso terapêuticoRESUMO
OBJECTIVE: Cancer patients often use complementary and alternative medicine (CAM). The aim of this study was to assess the expectations of cancer patients towards their general practitioner (GP) regarding information on and offers of CAM procedures. METHODS: A standardised anonymous questionnaire was developed and handed out to cancer patients in GP practices and oncology clinics in Germany. RESULTS: One hundred and eighty questionnaires were evaluable. For 88.1% of the patients, it was important that their GP regularly receives information on cancer therapy. Only a minority consulted with the GP regarding diagnosis and therapy of the cancer (32.4%) or approached him about side effects of the therapy (46.9%). About one fifth of the GPs offered CAM. Before the cancer diagnosis, only 7% of the patients received a CAM offer from the GP; after the diagnosis, it was 14%. A large majority wanted the GP to offer more complementary (70.9%) and alternative (54.3%) medicine. CONCLUSION: Our survey points to a clear mismatch of supply and demand regarding CAM for cancer patients in the primary care sector. Training for GPs on scientific evidence of as well as communication skills on CAM will be indispensable in the future to optimise the care of cancer patients by GPs.
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Terapias Complementares , Clínicos Gerais , Neoplasias , Alemanha , Humanos , Masculino , Neoplasias/terapia , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
Cancer patients need access to high-quality information, when making decisions about oral cancer drugs. The internet is often used as a source of information published by highly heterogeneous providers. The objective was to evaluate the quality of website providers supplying online information about oral cancer drugs. One hundred websites were analyzed using content-related and formal criteria, selected from three existing evaluation methods used for cancer websites, for medical information (defined by the German Agency for Quality in Medicine), and for the "fact box" tool. A web search by a patient was simulated to identify websites to evaluate. ANOVA was used to assess information provided by non-profit organizations (governmental and non-governmental), online newspapers, for-profit organizations, and private/unknown providers. Content-related quality differences were found between online newspapers and all other categories, with online newspapers ranking significantly lower than for-profit and non-profit websites. As for formal criteria, for-profit providers scored significantly lower than non-profit providers and online newspapers for the aspect of transparency. Internet information on oral cancer drugs published by non-profit organizations constitutes the best available web-based source of information for cancer patients. Health literacy and e-health literacy should be promoted in the public domain to allow patients to reliably apply web-based information. Certification should be required by law to ensure fulfillment of requirements for data reliability and transparency (authorship and funding) before health professionals recommend websites to cancer patients.
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Antineoplásicos , Letramento em Saúde , Neoplasias Bucais , Humanos , Internet , Neoplasias Bucais/tratamento farmacológico , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: Spiritual Care is a well established part of palliative medicine. Are religiosity / spirituality also ressources of patients during the early phases of a head neck cancer (HNC) disease? MATERIAL AND METHODS: We included 113 HNC patients (27 women, 84 men, 2 divers) to a prospective study using questionnaires focused on actual burden (NRS), spirituality as ressource (SpREUK-15, spiritual needs (SpNQ-20), interpretation of illness (IIQ), and life satisfaction of patients (BMLSS-10, BMLSS-Support, WHO-5). 39 patients were still under therapy, 74 participants were cancer-survivors. RESULTS: Only 31/111 (28â%) patients feel themselve as spiritual and/or religious. 72â% are neither spiritual nor religious. 51/111 see reflexion about their cancer disease as a specific ressource to overcome their actual cancer situation. Spiritual needs are religious in 35/112, existential in 67/112, inner peace in 90/112, and generativity in 84/112 patients. The accepted own religiosity and the actual stadium of disease are highly relevant impact factors on spiritual needs and ressources. HNC patients show a high part of depressive moods (WHO-5) and are (in trend) un-satisfied with their life and support situation. CONCLUSION: Up to 90â% of HNC patients have specific spiritual needs which are often hidden. Modern concepts of integrative oncology discover them, and enourage via these ressources the quality of life and the coping of cancer patients.
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Neoplasias de Cabeça e Pescoço , Neoplasias , Terapias Espirituais , Feminino , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Masculino , Estudos Prospectivos , Qualidade de Vida , Espiritualidade , Inquéritos e QuestionáriosRESUMO
BACKGROUND AND AIM: People in Germany are very sensitive about their health data. The electronic health record (ePA) also raises questions about the patient's need for data sovereignty and acceptance. The possibility of selectively withholding data stored in the ePA from physicians who continue to treat the patient (opt-out) and the patient's prior knowledge of the ePA could influence the need for data sovereignty and acceptance of the ePA. The aim of this explorative study is to investigate these influences for three patient groups: "acute patients," "diabetes type 2 patients," and "palliative patients," as differences are expected between these groups. MATERIALS AND METHODS: From August to October 2019, a quantitative survey was conducted among 140 patients in the abovementioned groups. RESULTS: Of the respondents, 76.0% supported the selective opt-out option and stated that this would increase their willingness to participate in the ePA. Specifically, 81.1% of acute care patients, 80.6% of palliative care patients, and 65.6% of type 2 diabetes patients made this statement. Differences between groups were not significant. A general prior knowledge of the ePA was related to a higher need for data sovereignty - 43.2% of those who had never heard of the ePA rollout would occasionally hide their health data from other physicians, compared with 54.5% who knew of the rollout. DISCUSSION: Consideration of the data sovereignty needs of patients in the further establishment of the ePA is recommended. The selective opt-out option can contribute to acceptance. Knowledge of the ePA should be expanded, especially in the doctor-patient discussion, to enable an informed decision.
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Diabetes Mellitus Tipo 2 , Registros Eletrônicos de Saúde , Humanos , Diabetes Mellitus Tipo 2/terapia , Alemanha , Cuidados Paliativos , Relações Médico-PacienteRESUMO
Health and holistic quality of life, physical and emotional needs, somatic and spiritual aspects contain a comprehensive promise of healing. The aim of the current study is to measure the expectations of patients of medicine, alternative medicine and religion related to health and illness. The survey was carried out among 103 patients of a rural general practitioner from May to June 2013 and among 103 patients of the outpatient department for endocrinology and metabolic disease of the Jena University Hospital in 2013. All patients were asked by one interviewer (HM) on fears in relation to health/illness and expectations of help for its own life, medicine, alternative medicine and religion. The biggest fear of patients is "being in need of help of others." There is no significant difference between religious and non-religious patients. Overall, the expectations of medicine were significantly higher in all sectors than in alternative medicine or religion. Comparing alternative medicine and religion, the expectations of alternative medicine were significantly higher excluding consolation and inner peace. The expectations for medicine in general and for the physician are very high and comprehensive and go beyond diagnosis and realization of therapies. Patients expect hope, guidance, support, comfort, inner peace and advice most from medicine. This results in considerable challenges for the physician, especially in a healthcare system with limited resources and without suitable offers. There is an urgent need to integrate these requirements into daily routine.
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Terapias Complementares , Qualidade de Vida , Humanos , Motivação , Religião , Religião e Medicina , Espiritualidade , Inquéritos e QuestionáriosRESUMO
Participating in patient self-help groups is highly recommended to patients in cancer care. Yet, engagement is relatively rare. A total of 253 patients participated in our study conducted as a paper-and-pencil questionnaire. A binominal logistic regression, with interest in participation in self-help groups being the dependent variable, was run. General interest in self-help was high among the respondents. Female gender, higher age, higher education and low self-efficacy were found to significantly predict interest in self-help. Patients reported a lack of information provided by medical professionals. Self-efficacy as a predictor might contribute to characterizing patients who might benefit from self-help group participation.
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Neoplasias/psicologia , Neoplasias/terapia , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Autoeficácia , Grupos de Autoajuda , Caracteres Sexuais , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: COVID-19 pandemic has impact on the oncology service system for tumor patients. What is the view of head and neck cancer patients (HNC) on this situation and which coping strategies were developed? MATERIAL & METHODS: In study 1 PRIO asked 433 tumor patients regarding their impressions/fears during the lockdown between April 15 and May 15, 2020 (online, standardized questionnaire). In 2nd study 292 tumor patients reported their pandemic-induced perceived changes and coping strategies by established questionnaires (WHO-5, MLQ, GrAw-7). An analysis of the HNC-data obtained by standardized questionnaires was performed. RESULTS: Study 1 had 91 HNC, study 2-84 HNC. Study 1 shows high stress levels for the majority of HNC (53,8â%). Personal fears regarding the own disease and therapies (39.6â%) are a central problem. The participants await physical (24.7â%) as well as psychological (21.3â%) consequences due to the pandemic and its current management. During the lockdown the isolation (banned visitors at any hospital) was discussed as critical main point by 58.5â% of HNC patients. Study 2 (after lockdown) underlined the mental stress caused by pandemic. Intensified relations within the families (58/100 points) as well as more intensive experience of nature and silence (58/60 points) are the most perceived changes in corona-times. HNC showed increased own inactivity (MLQ) and depressed well-being (WHO-5) and attention to the moment (GrAw-7). CONCLUSIONS: HNC patients have had high burden and fears due to the COVID-19 pandemic in spring 2020. Their views are important for further strategies to organize and stabilize the oncology service system during further pandemic periods.