9 research outputs found

    The use of herbal medicines by people with cancer: a qualitative study

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    BACKGROUND: Between 7% and 48% of cancer patients report taking herbal medicines after diagnosis. Because of the possibility of unwanted side effects or interactions with conventional treatments, people with cancer are generally advised to tell the professionals treating them if they are taking any form of medication, including herbal medicines and supplements. Studies suggest that only about half do so and that the professionals themselves have at best very limited knowledge and feel unable to give informed advice. This study is intended to inform the future development of information resources for cancer patients, survivors and healthcare professionals including tools for use before or during consultation to make it easier for patients to mention, and for healthcare professionals to ask about, use of herbal medications. METHODS/DESIGN: This is a three-phase study. In phase 1, a systematic review of the literature on self-medication with herbal medicines among UK populations living with cancer will establish the current evidence base on use of herbal medicine, sources of information, characteristics and motivations. This will allow us to better understand what aspects need further investigation and inform the topic guide for a qualitative study (phase 2). Six focus groups of six to eight cancer patients who have used at least one herbal preparation since diagnosis will explore behaviour, beliefs, knowledge, information sources and needs in an informal conversational setting. Informed by the findings of the systematic review and qualitative study, in phase 3 we will construct and pilot a questionnaire for a future large-scale survey to quantify and prioritise people's beliefs, needs and information preferences. DISCUSSION: Despite known interactions with conventional cancer treatments and contraindications for some herbal remedies with specific cancers, reliable information resources for patients are very limited. Identifying cancer patients' information needs and preferences is the first step in creating a suitable resource for both the public and the professionals advising them

    The use of herbal medicines by people with cancer in the UK: a systematic review of the literature

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    Background and Aim: Little is known about the use of herbal medicines by people living with cancer in the UK. This systematic review aimed to estimate the prevalence of herbal medicine use by this group, the characteristics of users, factors motivating use, and attitudes towards herbal remedies. Design and Methods: Fifteen electronic databases were searched. People who were research-active in the field were contacted and asked about further published or unpublished work. All studies identified as relevant to the purpose of the review were assessed. Searches were not restricted by publication type or date. Results: Of 1288 unique references identified, 11 met the eligibility criteria. Studies were excluded where research had been conducted outside the UK; where information on herbal medicine use was not differentiated from that relating to complementary and alternative therapies more broadly, and where neither prevalence of use nor information on user characteristics was included. Prevalence estimates ranged from 3.1 to 24.9%. Most studies did not obtain information specifically on herbal medicines and only one examined the characteristics and motivations of users of herbal medicines as distinct from complementary and alternative therapies in general. Conclusions: The high degree of heterogeneity of methodology, sample selection and characteristics, and research design resulted in a wide range of estimates of prevalence. Well-designed research is needed to define the evidence base about the herbal medicines taken by people with cancer in the UK, the reasons for use, knowledge about possible effects and potential risks, and where people seek information

    The use of herbal medicines by people with cancer: a qualitative study

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    Abstract Background Between 7% and 48% of cancer patients report taking herbal medicines after diagnosis. Because of the possibility of unwanted side effects or interactions with conventional treatments, people with cancer are generally advised to tell the professionals treating them if they are taking any form of medication, including herbal medicines and supplements. Studies suggest that only about half do so and that the professionals themselves have at best very limited knowledge and feel unable to give informed advice. This study is intended to inform the future development of information resources for cancer patients, survivors and healthcare professionals including tools for use before or during consultation to make it easier for patients to mention, and for healthcare professionals to ask about, use of herbal medications. Methods/design This is a three-phase study. In phase 1, a systematic review of the literature on self-medication with herbal medicines among UK populations living with cancer will establish the current evidence base on use of herbal medicine, sources of information, characteristics and motivations. This will allow us to better understand what aspects need further investigation and inform the topic guide for a qualitative study (phase 2). Six focus groups of six to eight cancer patients who have used at least one herbal preparation since diagnosis will explore behaviour, beliefs, knowledge, information sources and needs in an informal conversational setting. Informed by the findings of the systematic review and qualitative study, in phase 3 we will construct and pilot a questionnaire for a future large-scale survey to quantify and prioritise people's beliefs, needs and information preferences. Discussion Despite known interactions with conventional cancer treatments and contraindications for some herbal remedies with specific cancers, reliable information resources for patients are very limited. Identifying cancer patients' information needs and preferences is the first step in creating a suitable resource for both the public and the professionals advising them.</p

    Diagnosis and management in Pitt-Hopkins syndrome:First international consensus statement

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    Pitt-Hopkins syndrome (PTHS) is a neurodevelopmental disorder characterized by intellectual disability, specific facial features, and marked autonomic nervous system dysfunction, especially with disturbances of regulating respiration and intestinal mobility. It is caused by variants in the transcription factor TCF4. Heterogeneity in the clinical and molecular diagnostic criteria and care practices has prompted a group of international experts to establish guidelines for diagnostics and care. For issues, for which there was limited information available in international literature, we collaborated with national support groups and the participants of a syndrome specific international conference to obtain further information. Here, we discuss the resultant consensus, including the clinical definition of PTHS and a molecular diagnostic pathway. Recommendations for managing particular health problems such as dysregulated respiration are provided. We emphasize the need for integration of care for physical and behavioral issues. The recommendations as presented here will need to be evaluated for improvements to allow for continued optimization of diagnostics and care.</p

    The prognostic impact of t(11;14) in multiple myeloma: A real‐world analysis from the Australian Lymphoma Leukaemia Group (ALLG) and the Australian Myeloma and Related Diseases Registry (MRDR)

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    Abstract The prognostic impact of t(11;14) in multiple myeloma (MM) needs to be better understood to inform future treatment decisions. The Australian Lymphoma Leukaemia Group embarked on a retrospective, observational cohort study using real‐world data to interrogate treatment patterns and outcomes in 74 MM patients with t(11;14) [t(11;14)‐MM] diagnosed over 10 years. This was compared to 159 and 111 MM patients with high‐risk IgH translocations (IgH HR‐MM) and hyperdiploidy (Hyperdiploid‐MM), respectively, from the Australian Myeloma and Related Diseases Registry. No appreciable differences in age, gender, ISS, LDH levels, 1q21 or del(17p) status, or treatment patterns were observed between groups. Median PFS‐1 was not different between groups but both t(11;14)‐MM and IgH HR‐MM had an inferior PFS‐2 vs. Hyperdiploid‐MM: median PFS–2 8.2 months, 10.0 months, and 19.8 months (p = 0.002), respectively. The 3‐year OS were 69%, 71%, and 82% (p = 0.026), respectively. In the t(11;14)‐MM group, gain or amplification of 1q21 at diagnosis predicted for poorer OS (HR 3.46, p = 0.002). Eleven patients had received venetoclax with 45% achieving better than a very good partial response. Results suggest that t(11;14) MM may confer an unfavorable risk profile and that the use of targeted therapies such as venetoclax earlier in the treatment algorithm should be explored

    Diagnosis and management in Pitt-Hopkins syndrome: First international consensus statement

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    Pitt-Hopkins syndrome (PTHS) is a neurodevelopmental disorder characterized by intellectual disability, specific facial features, and marked autonomic nervous system dysfunction, especially with disturbances of regulating respiration and intestinal mobility. It is caused by variants in the transcription factor TCF4. Heterogeneity in the clinical and molecular diagnostic criteria and care practices has prompted a group of international experts to establish guidelines for diagnostics and care. For issues, for which there was limited information available in international literature, we collaborated with national support groups and the participants of a syndrome specific international conference to obtain further information. Here, we discuss the resultant consensus, including the clinical definition of PTHS and a molecular diagnostic pathway. Recommendations for managing particular health problems such as dysregulated respiration are provided. We emphasize the need for integration of care for physical and behavioral issues. The recommendations as presented here will need to be evaluated for improvements to allow for continued optimization of diagnostics and care
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