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

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

The quality of German - language patient decision aids for oncological patients on the internet.

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.

Evaluation of a Virtual Dance Class for Cancer Patients and Their Partners during the Corona Pandemic-A Real-World Observational Study.

BACKGROUND: During the corona pandemic, all courses on physical activity for cancer patients were canceled. The aim of our study was to evaluate the feasibility of switching dancing classes for patients and their partners to online classes. METHODS: Patients and partners from courses at four different locations who consented to the online course offer were asked to fill in a pseudonymous questionnaire on access to the training, technical challenges, acceptance and well-being (1-item visual analog scale from 1 to 10) before and after the training. RESULTS: Sixty-five participants returned the questionnaire (39 patients and 23 partners). Fifty-eight (89.2%) had danced before, and forty-eight (73.8%) had visited at least one course of ballroom dancing for cancer patients before. The first access to the online platform was difficult for 39 participants (60%). Most participants (57; 87.7%) enjoyed the online classes, but 53 (81.5%) rated them as less fun than the real classes as direct contact was missing. Well-being increased significantly after the lesson and remained improved for several days. CONCLUSION: Transforming a dancing class is feasible for participants with digital experience and goes along with technical difficulties. It is a substitute for real classes if mandatory and improves well-being.

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

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

[Complementary and alternative medicine-An option for chronic pain patients?] / Komplementäre und alternative Medizin ­ eine Option bei chronischen Schmerzpatienten?

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.

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

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

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

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

Development and Application of a Quality Assessment Tool for Oncological Question Prompt Lists.

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.

Umbrella review: Summary of findings for acupuncture as treatment for radiation-induced xerostomia.

Acupuncture is a common part of complementary medicine. However, traditional Chinese acupuncture has been built on concepts which are not in accordance with science-based medicine. Our aim was to critically assess the evidence presented in systematic reviews (SRs) and meta-analyses (MAs) about the effectiveness of acupuncture on radiotherapy induced xerostomia. A systematic search was conducted in February 2022. We evaluated all SRs/MAs using the AMSTAR-2 instrument. Eight SRs, with 12 controlled studies were included. All SRs summarize that the methodological drawbacks do not allow to give a clear statement about the effectiveness of acupuncture. While objective assessments in most SRs/MAs reported no difference between real and sham acupuncture, some favorable effects on subjective xerostomia symptoms are found. No clinical meaningful effectiveness of acupuncture on xerostomia has been proven so far, but positive subjective findings need to be explored more. While most SRs recommend further studies, studies involving patients with a serious cancer diagnosis are ethically questionable.

[Complementary and Alternative Medicine Offers of Teaching Practices for General Medicine]. / Komplementär- und alternativmedizinische Angebote von Lehrpraxen für Allgemeinmedizin.

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.

A virtual dance sport class for cancer patients: the trainer perspective.

PURPOSE: Due to the corona, pandemic classes with physical activity for cancer patients were postponed. For an ongoing program with ballroom dancing classes for patients and their partners, the training was switched to a digital format. METHODS: We evaluated the training by structured written interviews of the trainers including an open report part concerning the development and realization of the project, the teaching and training concept and their experiences as trainers. RESULTS: 5 trainers reported data from 6 different classes including 65 participants. All in all, digital dance training is feasible and a substantial part of the participants of former face-to-face training took part. Yet, digital training imposes some restrictions to the movements taught and the interactions with and between the participants. Trainers have to invest time in a new conception of the training and additional time in guiding participants with lower experience in technical issues. CONCLUSION: Participants in virtual training rooms need more support and social interactions in digital training are less and different from ballroom lessons and trainers which puts more strain on trainers to motivate cancer patients.

Decision-making by cancer patients and the role of a counselling facility for complementary and alternative medicine: a cohort study.

OBJECTIVE: The aim of this cohort study was to gain insight on influencing factors on the decision-making process in conventional medicine compared to complementary and alternative medicine (CAM). METHODS: A standardized questionnaire was distributed among cancer patients who attended the counselling facility for CAM of a German university hospital in 2020. RESULTS: Fifty patients (30.3%) returned the questionnaire. After counselling on CAM, most patients made a decision in CAM but also in conventional medicine. Thus, the focus on informed decision-making during counselling on CAM had a strong effect on the decision-making process in conventional medicine. Patients reporting good support also reported making decisions together with physicians and relatives. Moreover, after counselling on CAM, patients reported being more satisfied with their decision in both settings afterwards. CONCLUSION: Information on CAM which focuses on informed decision-making, supports patient's ability to understand and weigh risks and benefits of treatments, supports shared decision-making and enables patients to transfer these competences also to decisions on conventional medicine. So counselling on CAM may further decision-making competences in cancer patients. This encourages patients to engage in shared decision-making and increases patient's satisfaction with decisions.

Systematic analysis of mistletoe prescriptions in clinical studies.

PURPOSE: Mistletoe treatment is discussed controversial as a complementary treatment for cancer patients. Aim of this systematic analysis is to assess the concept of mistletoe treatment in the clinical studies with respect to indication, type of mistletoe preparation, treatment schedule, aim of treatment, and assessment of treatment results. METHODS: In the period from August to December 2020, the following databases were systematically searched: Medline, Embase, Cochrane Central Register of Controlled Trials (CENTRAL), PsycINFO, CINAHL, and "Science Citation Index Expanded" (Web of Science). We assessed all studies for study types, methods, endpoints and mistletoe preparations including their ways of application, host trees and dosage schedules. RESULTS: The search concerning mistletoe therapy revealed 3296 hits. Of these, 102 publications and at total of 19.441 patients were included. We included several study types investigating the application of mistletoe in different groups of participants (cancer patients of any type of cancer were included as well as studies conducted with healthy volunteers and pediatric patients). The most common types of cancer were breast cancer, pancreatic cancer, colorectal cancer and malignant melanoma. Randomized controlled studies, cohort studies and case reports make up most of the included studies. A huge variety was observed concerning type and composition of mistletoe extracts (differing pharmaceutical companies and host trees), ways of applications and dosage schedules. Administration varied e. g. between using mistletoe extract as sole treatment and as concomitant therapy to cancer treatment. As the analysis of all studies shows, there is no relationship between mistletoe preparation used, host tree and dosage, and cancer type. CONCLUSIONS: Our research was not able to deviate transparent rules or guidelines with respect to mistletoe treatment in cancer care.

[Alternative medicine in uro-oncology]. / Alternativmedizin in der Uroonkologie.

BACKGROUND: Alternative medicine is used instead of conventional therapy. Some patients use it in parallel with conventional medicine. OBJECTIVE: Narrative compilation of the evidence on alternative medicine in the (uro)oncological context. MATERIALS AND METHODS: A selective literature search in MEDLINE via PubMed was performed. RESULTS: The data on 3­bromopyruvate, Miracle Mineral Supplement (MMS), insulin-potentiated therapy, base therapy, hyperthermia, Artemisia annua, amygdalin (vitamin B17), Amanita therapy, homeopathy, apitherapy, dendritic cells, galavit, Germanic new medicine, and spiritual healing show either no or little clinical evidence of efficacy or clearly exhibit a negative benefit-risk profile. CONCLUSIONS: Alternative medicine is pseudo-medicine that may have a positive effect on mental well-being in the short term, but is mostly associated with disadvantages for the patient in the long term.

[Phytotherapy in uro-oncology]. / Phytotherapie in der Uroonkologie.

BACKGROUND: Complementary and alternative medicine (CAM) is used by about 40-90% of all patients with cancer. CAM also includes phytotherapy, which is considered to be a biologically based therapy. Depending on the survey, the users of phytotherapy account for up to 80%. The intention of the users is to fight cancer or to alleviate its symptoms. OBJECTIVES: Frequently used phytotherapeutics with their level of evidence and possible pitfalls are presented in a narrative review. Special attention is given to the uro-oncological context. MATERIALS AND METHODS: Popular phytotherapeutics (mistletoe, pomegranate, aloe vera, sage, ginger, ginseng) as well as three uronephrological plants (juniper, horsetail, bearberry) are classified and evaluated according to existing guidelines and by using a selective literature search. RESULTS: A total of nine plants were considered. Currently, there is no sufficient evidence for the use of pomegranate or mistletoe for tumor therapy. Guideline recommendations for or against symptom-oriented use exist for ginger (nausea; may be used), ginseng (fatigue; may be used), aloe vera (radiation dermatitis, should not be recommend), and bearberry (recurrent cystitis, may be used). A small number of studies on other symptoms and medicinal plants could be found (e.g., ginger - xerostomia, aloe vera - constipation, sage - oral mucositis or sweating). CONCLUSIONS: An integration of phytotherapeutic drugs into uro-oncological treatments concept can be considered. The benefits and risks of complementary herbal medicines (e.g., potential interactions with tumor therapy) must always be carefully weighed.

Methodological Review: Summary of Findings for Acupuncture as Treatment for Cancer Therapy-induced Xerostomia.

BACKGROUND/AIM: With a rapidly growing number of studies, systematic reviews (SRs) and meta-analyses (MAs) on acupuncture, the level of evidence seems to be high. Yet, traditional Chinese acupuncture is built on concepts which are not in accordance with science-based medicine. Accordingly, our aim was to critically assess the evidence presented in SRs and MAs on xerostomia induced by treatment of head and neck cancer with radiotherapy. MATERIALS AND METHODS: In February 2022, a systematic search of five electronic databases (Embase, Cochrane, PsychInfo, CINAHL and Medline) was conducted to find SRs/MAs on acupuncture use against cancer-treatment induced xerostomia. We evaluated all SRs/MAs using the AMSTAR instrument, comparing the assessment of the individual studies included and the conclusions drawn by the authors. In case of heterogeneity between the SRs, we evaluated the controversial items of the assessments directly from the studies. RESULTS: Finally, eight SRs/MAs were included. Most of them show methodological drawbacks in several domains of the AMSTAR instrument, which influences the credibility of the results. CONCLUSION: The evidence on the use of acupuncture as treatment for radiotherapy-induced xerostomia is low. Present SRs/MAs mainly summarize results of a few and mostly small studies. Even though the included studies greatly overlap, the quality of the presentation and interpretation of the authors differs greatly. Therefore, a high quality and conclusive summary of the present evidence on the use of acupuncture to treat radiotherapy induced xerostomia is still missing.

Patient activation, self-efficacy and usage of complementary and alternative medicine in cancer patients.

Complementary and alternative medicine (CAM) is used by many cancer patients by themselves. Therefore, we conducted a survey regarding the association between CAM, self-efficacy, and patient activation in adult cancer patients. A standardized questionnaire, consisted of the ASKU, the PAM 13-D, and a structured questionnaire on CAM usage from our own working group, was distributed to 880 potential participants. Six hundred and thirty-nine (639) patients (male 32.9%, female 63.2%; gynecological cancer 41%, gastrointestinal 19.2%, urogenital 15.6%) took part. 60% of all patients used CAM in the last 3 months (biological 73%, holistic 63%, mind-body methods 62%). Higher self-efficacy was associated with higher interest in CAM (p = 0.03), but not usage of CAM, compared to patients with lower self-efficacy (p = 0.099). Higher patient activation was associated with higher interest in CAM (p = 0.004) and usage of CAM (p = 0.012). Patients with higher activation significantly more often used homeopathy (p = 0.007), prayer (p = 0.002), yoga, etc. (p = 0.032), meditation (p = 0.002), low carb or ketogenic diets (p < 0.001) (but not vegan or other cancer diets). Higher patient activation is associated with higher usage of CAM. Focusing on patient activation as a goal in patient-physician relationship will help patients to adhere to a healthy lifestyle and to actively participate in the whole treatment process.

Cancer Patient Motives and Expectations on Non-medical Practitioners.

BACKGROUND/AIM: Non-medical practitioners (NMPs) are an ill-defined group of professionals offering patient diagnostic and therapeutic methods mostly in the field of complementary and alternative medicine (CAM). Despite a lack of quality-assessed structured professional formation, many patients with cancer visit NMPs for advice. This study aimed to learn more on patients' motives and expectations for consulting an NMP. PATIENTS AND METHODS: A standardized questionnaire was distributed to adult cancer patients addressing attitudes towards NMPs, motives and expectations for consulting an NMP. RESULTS: A total of 279 patients took part in the survey. Of the included patients 44.8% had already visited an NMP and 16.5% planned to do so. Reasons to visit an NMP were seeking for a supplementary treatment (72.0%) or control of side-effects (68.0%). While the oncologist ranked higher than the NMP in all aspects of physician-patient interaction and patients more often trusted in the oncologist, those patients rating their oncologist rather low in any of these questions significantly more often consulted an NMP. The methods applied or recommended by the NMPs were highly heterogenous ranging from biologically-based methods to mind-body-techniques. Most often used methods were homeopathy (72.0%) vitamin D (62.7%), selenium (42.7%), acupuncture (38.7%). CONCLUSION: There is a high proportion of cancer patients visiting NMPs mostly for additional treatment. Biologically-based treatments may induce side-effects and interactions, especially as NMPs are not trained on medically accepted cancer treatment and medications. Offering information on CAM and improving the physician-patient relationship are important means to answer unmet needs from the side of the patient.