Development and analysis of quality assessment tools for different types of patient information - websites, decision aids, question prompt lists, and videos.

OBJECTIVE: Our working group has developed a set of quality assessment tools for different types of patient information material. In this paper we review and evaluate these tools and their development process over the past eight years. METHODS: We compared the content and structure of quality assessment tools for websites, patient decision aids (PDAs), question prompt lists (QPLs), and videos. Using data from their various applications, we calculated inter-rater concordance using Kendall's W. RESULTS: The assessment tools differ in content, structure and length, but many core aspects remained throughout the development over time. We found a relatively large variance regarding the amount of quality aspects combined into one item, which may influence the weighting of those aspects in the final scores of evaluated material. Inter-rater concordance was good in almost all applications of the tool. Subgroups of similar expertise showed higher concordance rates than the overall agreement. CONCLUSION: All four assessment tools are ready to be used by people of different expertise. However, varying expertise may lead to some differences in the resulting assessments when using the tools. The lay and patient perspective needs to be further explored and taken into close consideration when refining the instruments.

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.

[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.

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.

The role of the general practitioner in cancer care in general and with respect to complementary and alternative medicine for patients with cancer.

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.

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.

Homeopathy effects in patients during oncological treatment: a systematic review.

PURPOSE: In this systematic review we included clinical studies from 1800 until 2020 to evaluate evidence of the effectiveness of homeopathy on physical and mental conditions in patients during oncological treatment. METHOD: In February 2021 a systematic search was conducted searching five electronic databases (Embase, Cochrane, PsychInfo, CINAHL and Medline) to find studies concerning use, effectiveness and potential harm of homeopathy in cancer patients. RESULTS: From all 1352 search results, 18 studies with 2016 patients were included in this SR. The patients treated with homeopathy were mainly diagnosed with breast cancer. The therapy concepts include single and combination homeopathic remedies (used systemically or as mouth rinses) of various dilutions. Outcomes assessed were the influence on toxicity of cancer treatment (mostly hot flashes and menopausal symptoms), time to drain removal in breast cancer patients after mastectomy, survival, quality of life, global health and subjective well-being, anxiety and depression as well as safety and tolerance. The included studies reported heterogeneous results: some studies described significant differences in quality of life or toxicity of cancer treatment favouring homeopathy, whereas others did not find an effect or reported significant differences to the disadvantage of homeopathy or side effects caused by homeopathy. The majority of the studies have a low methodological quality. CONCLUSIONS: For homeopathy, there is neither a scientifically based hypothesis of its mode of action nor conclusive evidence from clinical studies in cancer care.

Self-efficacy in relation to the use of complementary and alternative medicine, lifestyle choices and cancer aetiology.

PURPOSE: This survey assesses cancer patients' etiological concepts, lifestyle choices, use of complementary and alternative medicine (CAM), and self-efficacy, as well as associations between those. It aims to find patterns which may facilitate communication and understanding between patients and physicians. METHODS: 353 oncological patients attending lectures on CAM answered a questionnaire. Correlations were examined and an exploratory factor analysis conducted to identify comprehensive lay-etiological concepts among a list of potential carcinogenic factors. RESULTS: Patients considered scientifically proven agents as well as other non-carcinogenic influences to be responsible for their disease. An exploratory factor analysis yielded vague indications of possible underlying concepts but factors tend to include items that do not fit the pattern in terms of content. Higher self-efficacy correlated with healthy diet and sports, but not with use of CAM. No conclusive correlations emerged between lay-aetiological concepts and most other variables, but we found a tendency for higher self-efficacy among patients who assigned higher carcinogenic effects to tobacco and lower carcinogenic effects to fasting and physical trauma. CONCLUSION: Interest in CAM can arise for many reasons that are not necessarily related to self-efficacy. Lay-aetiological concepts of cancer differ significantly from scientific ones. They are complex and presumably highly individualistic. Their connection to use of CAM methods, lifestyle choices and self-efficacy should be explored in more detail. Patient information and communication with clinicians need to address cancer patients' individual aetiological concepts to further patient's understanding not only of their diagnosis but also of the treatment as well.

Water therapies (hydrotherapy, balneotherapy or aqua therapy) for patients with cancer: a systematic review.

BACKGROUND: Water therapies as hydrotherapy, balneotherapy or aqua therapy are often used in the relief of disease- and treatment-associated symptoms of cancer patients. Yet, a systematic review for the evidence of water therapy including all cancer entities has not been conducted to date. PURPOSE: Oncological patients often suffer from symptoms which in patients with other diseases are successfully treated with water therapy. We want to gather more information about the benefits and risks of water therapy for cancer patients. METHOD: In May 2020, a systematic search was conducted searching five electronic databases (Embase, Cochrane, PsychInfo, CINAHL and PubMed) to find studies concerning the use, effectiveness and potential harm of water therapy on cancer patients. RESULTS: Of 3165 search results, 10 publications concerning 12 studies with 430 patients were included in this systematic review. The patients treated with water therapy were mainly diagnosed with breast cancer. The therapy concepts included aqua lymphatic therapy, aquatic exercises, foot bathes and whole-body bathes. Outcomes were state of lymphedema, quality of life, fatigue, BMI, vital parameters, anxiety and pain. The quality of the studies was assessed with the AMSTAR2-instrument, the SIGN-checklist and the IHE-Instruments. The studies had moderate quality and reported heterogeneous results. Some studies reported significantly improved quality of life, extent of lymphedema, neck and shoulder pain, fatigue and BMI while other studies did not find any changes concerning these endpoints. CONCLUSION: Due to the very heterogeneous results and methodical limitations of the included studies, a clear statement regarding the effectiveness of water therapy on cancer patients is not possible.

Cancer patients' perspective on shared decision-making and decision aids in oncology.

PURPOSE: Shared Decision-Making (SDM) enhances patients' satisfaction with a decision, which in turn increases compliance with and adherence to cancer treatment. SDM requires a good patient-clinician relationship and communication, patients need information matching their individual needs, and clinicians need support on how to best involve the individual patient in the decision-making process. This survey assessed oncological patients' information needs and satisfaction, their preferred information in patient decision aids (PDAs), and their preferred way of making decisions regarding their treatment. METHODS: Questionnaires were distributed among attendees of a lecture program on complementary and alternative medicine in oncology of which 220 oncological patients participated. RESULTS: Participants reported a generally high need for information-correlating with level of education-but also felt overwhelmed by the amount. The latter proved particularly important during consultation. Use of PDAs increased satisfaction with given information but occurred in less than a third of the cases. Most requested contents for PDAs were pros and cons of treatment options and lists of questions to ask. The vast majority of patients preferred SDM to deciding alone. None wanted their physician to decide for them. CONCLUSIONS: There is a high demand for SDM but a lack of conclusive evidence on the specific information needs of different types of patients. Conversation between patients and clinicians needs encouragement and support. PDAs are designed for this purpose and have the potential to increase patient satisfaction. Their scarce use in consultations calls for easier access to and better information on PDAs for clinicians.

Effect of question prompt lists for cancer patients on communication and mental health outcomes-A systematic review.

OBJECTIVE: To provide a systematic review on the effects of question prompt lists (QPL) in oncological settings. METHODS: A systematic literature search was conducted in Medline, PsycINFO and the Cochrane Collaboration. Randomized controlled studies (RCTs) that evaluated QPL-only interventions were included. Risk of bias of included studies was evaluated using the Cochrane RoB 2 tool. Data concerning effects on communicative processes in patient-physician relationship and psychological outcomes were analyzed. RESULTS: 10 RCTs met the inclusion criteria. Results suggest that QPLs lead to a shift of topics discussed. There were weak indications that QPL interventions increase anxiety shortly before and after consultations, but may decline anxiety during follow-up. Patients consistently perceive QPLs as more helpful than usual information sheets. QPL-only interventions show limited impact on communicative processes and psychological outcomes. They help not to forget or discuss important questions. CONCLUSION: With a better integration in patient-physician communication QPLs may become a useful tool for patients and physicians. Future research is needed to investigate if there is greater benefit from QPL interventions in specific settings. PRACTICE IMPLICATIONS: QPLs are an inexpensive tool to influence communicative processes positively in oncological consultations.