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1.
Support Care Cancer ; 32(8): 521, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39017937

RESUMO

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.


Assuntos
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/métodos
2.
BMC Cancer ; 23(1): 439, 2023 May 15.
Artigo em Inglês | MEDLINE | ID: mdl-37189037

RESUMO

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 .


Assuntos
COVID-19 , Neoplasias , Criança , Feminino , Humanos , Controle de Doenças Transmissíveis , COVID-19/epidemiologia , Neoplasias/epidemiologia , Neoplasias/terapia , Pandemias , Aceitação pelo Paciente de Cuidados de Saúde
3.
Support Care Cancer ; 31(6): 327, 2023 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-37154985

RESUMO

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.


Assuntos
COVID-19 , Qualidade de Vida , Humanos , Controle de Doenças Transmissíveis , Psicoterapia , Comunicação
4.
BMC Med Inform Decis Mak ; 23(1): 161, 2023 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-37596582

RESUMO

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.


Assuntos
Internet , Oncologia , Humanos , Alemanha , Idioma , Técnicas de Apoio para a Decisão
5.
Gesundheitswesen ; 85(8-09): 732-740, 2023 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-37028417

RESUMO

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.


Assuntos
Pacientes Internados , Pacientes Ambulatoriais , Humanos , Satisfação do Paciente , Psicometria/métodos , Reprodutibilidade dos Testes , Alemanha , Inquéritos e Questionários
6.
Gesundheitswesen ; 85(3): 158-164, 2023 Mar.
Artigo em Alemão | MEDLINE | ID: mdl-35016252

RESUMO

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.


Assuntos
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 , Ensino
7.
Schmerz ; 37(3): 215-227, 2023 Jun.
Artigo em Alemão | MEDLINE | ID: mdl-37154977

RESUMO

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.


Assuntos
Terapia por Acupuntura , Dor Crônica , Terapias Complementares , Homeopatia , Humanos , Dor Crônica/terapia , Terapias Complementares/métodos , Homeopatia/métodos , Terapia por Acupuntura/métodos
8.
J Cancer Educ ; 38(5): 1493-1500, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-36997823

RESUMO

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.


Assuntos
Relações Médico-Paciente , Neoplasias da Próstata , Masculino , Humanos , Inquéritos e Questionários , Comunicação , Participação do Paciente
9.
Nutr Cancer ; 74(6): 2017-2028, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34607484

RESUMO

With rising cancer incidence rates and numbers of long-term cancer survivors, diet increasingly comes into view of patients as well as healthcare providers. The aim was to analyze cancer patients' concepts of nutrition, changes in diet and reasons for these changes. This study is a cross-sectional single-center study. Data was collected 12/2017 - 01/2019 using a questionnaire. The study was set at an outpatient department at a German university hospital. 102 patients (male n = 47, female n = 54; age 34 to 86 years [mean = 62.3]) with cancer were included in the study. Statistical calculation was performed with Mann-Whitney-U-Test and Wilcoxon-signed-rank. p < 0.05 was considered significant. Patients were more concerned with diet after their diagnosis than before (p < 0.01). Seventy-one (70%) patients reported that they changed their diet or planned to do so. Some changes included an increased intake of vegetables or fruits. Patients who changed their diet more often were convinced that there was a positive influence of diet on the course of cancer (p < 0.05). Diet is an important topic for many cancer patients. Some patients seem to have a lack of information regarding the effect of diet on health. Physicians and dietitians should provide more education on healthy and safe diets for cancer patients.


Assuntos
Neoplasias , Verduras , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Dieta , Feminino , Frutas , Humanos , Masculino , Pessoa de Meia-Idade , Estado Nutricional
10.
J Cancer Educ ; 37(4): 983-993, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-33128211

RESUMO

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.


Assuntos
Antineoplásicos , Letramento em Saúde , Neoplasias Bucais , Humanos , Internet , Neoplasias Bucais/tratamento farmacológico , Reprodutibilidade dos Testes
11.
Wien Med Wochenschr ; 2022 Aug 10.
Artigo em Inglês | MEDLINE | ID: mdl-35948702

RESUMO

BACKGROUND: Adult education centers are an important part of health education worldwide. Our aim was to evaluate the courses offered by German adult education centers with regard to complementary medicine and nutrition. METHODS: A systematic web-based search was done for the websites of German adult education centers and courses were analyzed considering topics, scientific soundness, and qualification of instructors. RESULTS: Our search revealed 502 courses, 360 (71.7%) related to complementary and alternative medicine (CAM) and 176 courses on nutrition (35.1%). CAM courses most often presented methods with a focus on traditional Eastern medicine with yoga and similar mind-body practices (41.9%), traditional Chinese medicine (TCM; 13.3%), and ayurvedic medicine (11.4%). Content concerning nutrition mainly included controversial fasting methods like alkaline fasting, detox diets, and therapeutic fasting (43.8%), as well as Eastern traditional diets from TCM and ayurveda (21.7%). Most of the courses were given by non-medical practitioners (NMPs; 36.4%), while only very few physicians were engaged. CONCLUSION: There are substantial doubts on the scientific background of many courses offered for lay adult health education. Besides direct misinformation, many courses reinforce alternative and non-evidence-based notions in society. Adult education centers should reconsider the topics of their courses as well as the professional qualifications of the instructors.

12.
J Relig Health ; 61(1): 601-615, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32948977

RESUMO

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.


Assuntos
Terapias Complementares , Qualidade de Vida , Humanos , Motivação , Religião , Religião e Medicina , Espiritualidade , Inquéritos e Questionários
13.
Cancer Invest ; 39(3): 219-228, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33475001

RESUMO

BACKGROUND: We aimed at clarifying correlations between lay etiologies, self-efficacy, and patient activation among cancer patients. METHODS: Patients with different kinds of cancer answered a questionnaire on self-efficacy, lay etiology, and patient activation. RESULTS: 639 patients participated. Psychological reasons/stress (43.3%) and destiny (41.6%) were the most cited causes. Lay etiology was influenced by demographics, self-efficacy, and patient activation. Men, younger people, and active patients more often described internal causes of cancer, women and religious patients more often external causes. Patients with higher scores of self-efficacy were more often convinced of external cancer causes. CONCLUSION: By identifying individual disease theories, physicians may improve patient-physician communication.


Assuntos
Neoplasias/etiologia , Neoplasias/psicologia , Participação do Paciente/psicologia , Autoeficácia , Idoso , Feminino , Alemanha , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Estresse Psicológico , Inquéritos e Questionários
14.
Wien Med Wochenschr ; 2021 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-34902098

RESUMO

In Germany, non-medical practitioners (NMPs; in German: Heilpraktiker) offer a broad range of complementary and alternative (CAM) methods. Our aim was to characterize schools for NMPs in Germany in terms of basic (medical) training and advanced education. We found 165 schools for NMPs in a systematic web-based search. As the medical board examination NMPs must take before building a practice exclusively tests their knowledge in conventional medicine, schools hardly include training in CAM methods. Only few schools offered education on CAM methods in their NMP training. Although NMP associations framed requirements for NMP education, 83.0% (137/165) of schools did not meet these requirements. Patients and physicians should be aware of the lack of training and consequent risks, such as harm to the body, delay of necessary treatment, and interaction with conventional drugs. Disestablishing the profession of NMPs might be a reasonable step.

15.
BMC Med Res Methodol ; 20(1): 120, 2020 05 15.
Artigo em Inglês | MEDLINE | ID: mdl-32414331

RESUMO

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


Assuntos
Letramento em Saúde , Qualidade de Vida , Alemanha , Humanos , Oncologia , Estudos Multicêntricos como Assunto , Inquéritos e Questionários
16.
J Cancer Educ ; 35(1): 22-27, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-30338481

RESUMO

Numeracy is highly relevant for therapy safety and effective self-management. Worse numeracy leads to poor health outcome. Most medical information is expressed in numbers. Considering the complexity of decisions, more information on the patient's ability to understand information is needed. We used a standardized questionnaire. Content was self-perception of numeracy, preferences regarding decision-making with respect to medical issues, and preferred content of information from four possible answers on side effect of cancer therapies (insomnia) within two scenarios. Overall, 301 participants answered the questionnaire. Presentation of facts in numbers was rated as helpful or very helpful (59.4%). Higher numeracy was associated with higher appreciation for presentation in numbers (p = 0.002). Although participants indicated presentation of facts in numbers as helpful in general, the favored answer in two concrete scenarios was verbal and descriptive instead of numerical. Numeracy is highly relevant for therapy safety and effective self-management. Health professionals need more knowledge about patient's ability and preferences with respect to presentation of health information. An individualized patient communication might be the best strategy to discuss treatment plans. We need to understand in which situations patients benefit from numerical presentation and how managing numerical data might influence decision processes.


Assuntos
Comunicação , Compreensão , Tomada de Decisões , Letramento em Saúde/estatística & dados numéricos , Neoplasias/terapia , Preferência do Paciente/psicologia , Inquéritos e Questionários/normas , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades
17.
J Cancer Educ ; 34(4): 696-704, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-29651761

RESUMO

Understandable health information is essential for treatment adherence and improved health outcomes. For readability testing, several instruments analyze the complexity of sentence structures, e.g., Flesch-Reading Ease (FRE) or Vienna-Formula (WSTF). Moreover, the vocabulary is of high relevance for readers. The aim of this study is to investigate the agreement of sentence structure and vocabulary-based (SVM) instruments. A total of 52 freely available German patient information booklets on cancer were collected from the Internet. The mean understandability level L was computed for 51 booklets. The resulting values of FRE, WSTF, and SVM were assessed pairwise for agreement with Bland-Altman plots and two-sided, paired t tests. For the pairwise comparison, the mean L values are LFRE = 6.81, LWSTF = 7.39, LSVM = 5.09. The sentence structure-based metrics gave significantly different scores (P < 0.001) for all assessed booklets, confirmed by the Bland-Altman analysis. The study findings suggest that vocabulary-based instruments cannot be interchanged with FRE/WSTF. However, both analytical aspects should be considered and checked by authors to linguistically refine texts with respect to the individual target group. Authors of health information can be supported by automated readability analysis. Health professionals can benefit by direct booklet comparisons allowing for time-effective selection of suitable booklets for patients.


Assuntos
Letramento em Saúde , Internet/normas , Neoplasias/psicologia , Educação de Pacientes como Assunto/métodos , Leitura , Vocabulário , Compreensão , Alemanha , Humanos , Disseminação de Informação/métodos , Internet/estatística & dados numéricos , Neoplasias/prevenção & controle , Educação de Pacientes como Assunto/normas
19.
J Cancer Educ ; 33(3): 517-527, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-27726109

RESUMO

The improvement of health literacy in general and the information of individual patient is a major concern of the German national cancer plan and similar initiatives in other western countries. The aim of our study was to assess the readability and understandability of information booklets for cancer patients available at German Web sites. A support vector machine (SVM) was used to discriminate between laymen- and expert-centric patient information booklets about nine most common tumor types. All booklets had to be available for free at the Internet. A total of 52 different patient booklets were downloaded and assessed. Overall, the assessment of all booklets showed that an understandability level L of 4.6 and therefore increased medical background knowledge is required to understand a random text selected from the sample. The assessed information booklets on cancer show very limited suitability for laymen. We were able to demonstrate that a medical background is necessary to understand the examined booklets. The current study highlights the need to create information material adjusted to the needs of laymen. Assessing understandability before publication, especially for laymen with low health literacy, could ensure the suitability and thus quality of the information material.


Assuntos
Letramento em Saúde , Alfabetização/normas , Neoplasias/epidemiologia , Folhetos , Educação de Pacientes como Assunto/normas , Alemanha , Humanos , Internet , Máquina de Vetores de Suporte
20.
J Cancer Educ ; 33(5): 1132-1139, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-28474220

RESUMO

According to the information-seeking behaviors of patients, booklets which can be downloaded from the Internet for free are an important source of information notably for patients with cancer. This study investigated whether information booklets for patients with cancer available at German websites are in accordance with the formal and content criteria of evidence-based information. We compared and compiled both content and formal criteria by matching different national and international standards for written patient information using a merged instrument. A catalog with a total of 16 items within 4 categories (quality of the publication, quality of information, quality of information representation, and transparency) was created. Patient information booklets for the most frequent tumor types were collected from the Internet. A total of 52 different patient booklets were downloaded and assessed. Overall, no booklet fulfilled all criteria. The quality of the publications was evaluated with an average value of 1.67 while the quality of the information had a mean value of 1.45, and the quality of information presentation had a similar rating (1.39). The transparency criteria were evaluated as lowest with an average of 1.07. In summary, German booklets for cancer patients have some shortcomings concerning formal and content criteria for evidence-based patient information. The applied requirement catalog is suitable for wide use and may help in quality assurance of health information. It may be used as part of an obligatory external evaluation, which could help improving the quality of health information.


Assuntos
Comportamento de Busca de Informação , Internet/normas , Idioma , Neoplasias/prevenção & controle , Publicações/normas , Garantia da Qualidade dos Cuidados de Saúde , Alemanha , Humanos , Folhetos
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