scholarly journals LINC-10. SIOP PODC ADAPTED TREATMENT GUIDELINES FOR CRANIOPHARYNGIOMA IN LOW- AND MIDDLE-INCOME SETTINGS

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii379-iii380
Author(s):  
Nisreen amayiri ◽  
Ariane Spitaels ◽  
Mohamed Zaghloul ◽  
Anthony Figaji ◽  
Sergio Cavalheiro ◽  
...  

Abstract Pediatric craniopharyngioma is a rare tumor with excellent survival but significant long-term morbidities due to the loco-regional tumor growth or secondary to its treatment. Visual impairment, panhypopituitarism, hypothalamic damage and behavioral changes are amongst the main challenges. This tumor should be managed under the care of a multidisciplinary team to determine the optimum treatment within the available resources. This is particularly important for low middle-income countries (LMICs) where resources are variable. We provide a risk-stratified management guideline for children diagnosed with craniopharyngioma in a resource limited setting based on the service levels describing the facilities and personnel required for management as previously specified by the Pediatric Oncology in Developing Countries (PODC) committee of The International Society of Pediatric Oncology (SIOP). A multi-disciplinary group of neurosurgeons, radiation and pediatric oncologists, radiologists, pediatric endocrinologists and an ophthalmologist with experience in managing children with craniopharyngioma in LMIC setting was formed and carried online meetings to form a consensus guideline. The clinical characteristics (including the visual and endocrine presentations), suggestive radiological features as well as potential treatment options including surgery, radiotherapy and intra-cystic therapies were discussed in depth and in relation to available resources. In addition, hormonal management, pre- and post-operative PICU care and expected future complications related to craniopharyngioma and to follow up these children were discussed and documented in the guideline. We believe this guideline is a useful reference for health care providers in LMIC.

2021 ◽  
Author(s):  
William A. Gahl ◽  
Durhane Wong-Rieger ◽  
Virginie Hivert ◽  
Rachel Yang ◽  
Galliano Zanello ◽  
...  

Abstract Background Treatments are often unavailable for rare disease patients, especially in low-and-middle-income countries. Reasons for this include lack of financial support for therapies and onerous regulatory requirements for approval of drugs. Other barriers include lack of reimbursement, administrative infrastructure, and knowledge about diagnosis and drug treatment options. The International Rare Diseases Research Consortium set up the Rare Disease Treatment Access Working Group with the first objective to develop an essential list of medicinal products for rare diseases. Results The Working Group extracted 215 drugs with Orphan designation in the FDA, EMA databases and/or China’s Rare Diseases Catalog. The drugs were organized in seven disease categories: metabolic, neurologic, hematologic, anti-inflammatory, endocrine, pulmonary, and immunologic, plus a miscellaneous category. Conclusions The proposed list of essential medicinal products for rare diseases is intended to initiate discussion and collaboration among patient advocacy groups, health care providers, industry and government agencies to enhance access to appropriate medicines for all rare disease patients throughout the world.


2020 ◽  
Vol 5 (S1) ◽  
pp. 123-125
Author(s):  
Jan Passchier ◽  
Hari Setyowibowo ◽  
Joke AM Hunfeld ◽  
Aulia Iskandarsyah ◽  
Whisnu Yudiana ◽  
...  

The Covid-19 pandemic has significant consequences for the many self-help psychoeducational programs for patients with cancer (symptoms), especially in Low-Middle-Income Countries. We recommend several measures to adapt these programs to the COVID-19 era, such as the use of mobile versions, the addition of preventive measures to be taken by health care providers and patients concerning a hospital visit and the inclusion of psychological advice for coping with COVID-19 related stress. In this way, the double task of preventing the (progression of the) target disease and a contamination by COVID-19 might be optimally fulfilled.


2021 ◽  
Vol 3 (2) ◽  
pp. 457-466

Introduction: Retinopathy of Prematurity (ROP) is the significant cause of blindness in children globally. Although the incidence of ROP is greater in premature infants worldwide, statistics show that it is more common in low-middle-income countries. Multiple causes and complications of ROP in low middle-income countries have been reported therefore the purpose of this literature review was to review the findings from literature about the burden, causes, outcomes, and important preventive measures of ROP for low middle-income countries, especially in Pakistan. Methods: A comprehensive review of the literature was conducted from published articles. Research studies were selected that included risk factors of ROP, screening, and diagnosis of ROP, treatment of ROP, and prevention of ROP.Results The cause of the high rate of ROP in Low-middle income countries (LMICs) includes a high rate of preterm babies, lack of awareness regarding ROP, financial instability, and insufficient treatment and screening programs at the newborn units. ROP is found to be the significant cause of preventable blindness in South Asia. There are three different levels of prevention aimed at reducing the burden of ROP in LMICs. Primary prevention aims at reduction in preterm births, secondary prevention aims at early diagnosis of the disease and tertiary prevention aims at reducing deterioration of conditions due to disease. Conclusion: The emphasis on preventive measures especially primary and secondary level prevention can help in decreasing the burden of ROP. This requires a multidisciplinary approach at all levels including at the level of policymaking, program implementation, health care providers, and community level.


2021 ◽  
Vol 16 (1) ◽  
Author(s):  
William A. Gahl ◽  
Durhane Wong-Rieger ◽  
Virginie Hivert ◽  
Rachel Yang ◽  
Galliano Zanello ◽  
...  

Abstract Background Treatments are often unavailable for rare disease patients, especially in low-and-middle-income countries. Reasons for this include lack of financial support for therapies and onerous regulatory requirements for approval of drugs. Other barriers include lack of reimbursement, administrative infrastructure, and knowledge about diagnosis and drug treatment options. The International Rare Diseases Research Consortium set up the Rare Disease Treatment Access Working Group with the first objective to develop an essential list of medicinal products for rare diseases. Results The Working Group extracted 204 drugs for rare diseases in the FDA, EMA databases and/or China’s NMPA databases with approval and/or marketing authorization. The drugs were organized in seven disease categories: metabolic, neurologic, hematologic, anti-inflammatory, endocrine, pulmonary, and immunologic, plus a miscellaneous category. Conclusions The proposed list of essential medicinal products for rare diseases is intended to initiate discussion and collaboration among patient advocacy groups, health care providers, industry and government agencies to enhance access to appropriate medicines for all rare disease patients throughout the world.


2021 ◽  
Vol 12 ◽  
pp. 215013272199219
Author(s):  
Danielle J. O’Laughlin ◽  
Brittany Strelow ◽  
Nicole Fellows ◽  
Elizabeth Kelsey ◽  
Sonya Peters ◽  
...  

To review the anxiety and fear risk factors, pathophysiology, symptoms, screening and diagnosis while highlighting treatment considerations for women undergoing a pelvic examination. Methods: We reviewed the literature pertaining to anxiety and fear surrounding the pelvic examination to help guide health care providers’ on available screening options and to review options for individualized patient management. Results: Anxiety and fear are common before and during the pelvic examination. In fact, the pelvic exam is one of the most common anxiety-provoking medical procedures. This exam can provoke negative physical and emotional symptoms such as pain, discomfort, anxiety, fear, embarrassment, and irritability. These negative symptoms can interfere with preventative health screening compliance resulting in delayed or avoided care and significant health consequences. Conclusion: Assessing women for anxiety related to pelvic examinations may help decrease a delay or avoidance of examinations. Risk factor and symptom identification is also a key component in this. General anxiety questionnaires can help identify women with anxiety related to pelvic examinations. Strategies to reduce anxiety, fear and pain during a pelvic examination should routinely be implemented, particularly in women with high-risk factors or those identified with screening techniques as having anxiety, fear or pain with examinations. Treatment options should be targeted at understanding the patient’s concerns, starting conversations about pelvic examinations early, educating patient’s about the examination and offering the presence of a chaperone or support person. During an examination providers should ensure the patient is comfortable, negative phrases are avoided, the correct speculum size is utilized and proper lubrication, draping, dressing and positioning are performed. Treating underlying gynecologic or mental health conditions, consideration of cognitive behavioral therapy and complementary techniques such as lavender aromatherapy and music therapy should also be considered when appropriate.


2007 ◽  
Vol 45 (7) ◽  
pp. 807-825 ◽  
Author(s):  
L. Joseph Wheat ◽  
Alison G. Freifeld ◽  
Martin B. Kleiman ◽  
John W. Baddley ◽  
David S. McKinsey ◽  
...  

Abstract Evidence-based guidelines for the management of patients with histoplasmosis were prepared by an Expert Panel of the Infectious Diseases Society of America. These updated guidelines replace the previous treatment guidelines published in 2000 (Clin Infect Dis 2000; 30:688–95). The guidelines are intended for use by health care providers who care for patients who either have these infections or may be at risk for them. Since 2000, several new antifungal agents have become available, and clinical trials and case series have increased our understanding of the management of histoplasmosis. Advances in immunosuppressive treatment for inflammatory disorders have created new questions about the approach to prevention and treatment of histoplasmosis. New information, based on publications from the period 1999–2006, are incorporated into this guideline document. In addition, the panel added recommendations for management of histoplasmosis in children for those aspects that differ from aspects in adults.


2021 ◽  
Vol 46 (11) ◽  
pp. 3-4
Author(s):  
Molly Antone ◽  

Dying today looks dramatically different than it did a century ago, largely due to wider treatment options and more specialized medical practices. Often missing from these advancements is the focus on factors relative to a patient’s total circumstances. Especially in light of the recent pandemic, it is incumbent upon Catholic health care providers to treat who whole person rather than simply focus on more utilitarian philosophies of care.


2015 ◽  
Vol 14 (1) ◽  
pp. 42-46 ◽  
Author(s):  
Zobaer Alam ◽  
Md Monoarul Haque ◽  
Md Rijwan Bhuiyan ◽  
Md Shahinoor Islam ◽  
Monirul Haque ◽  
...  

Background: The burden of childhood disability as a public health problem in developing countries remains relatively unrecognized. One out of 750 children born in the world suffer from club foot among them 80% are in low and middle income countries. Most of these babies have limited access to receive effective treatment for their clubfoot due to lack o knowledge, awareness and some barriers. We actually don’t know the level of knowledge of parents who have child with clubfoot deformity. The purpose of this study was to assess the level of knowledge of parents who have children with clubfoot during clubfoot treatment. Materials and Methods: This cross sectional study was conducted among 102 parents who have children with clubfoot deformity during its treatment in a selected clinic. The samples were selected purposively from the clinics where clubfoot treatment was given and face to face interview was done by using semi-structured questionnaire. Results: The mean (±SD) age of the respondents were 24.7 (±6.0) years where 87.3% (n=89) respondents ware female and 59.8 %(n=61) respondent’s educational status ware up to primary level. About 44.1% respondents started treatment of their child within 6 months of birth and 33% within 6 to 12 months where 57% (n=58) respondents are referred by health care professional to this clinics. About 93.1% of parents (n=95) said that they knew nothing about clubfoot deformity before their child was diagnosed where 97% are aware after diagnosis of their child. About 93.1% respondents knew the best time for treatment initiation where 59.8% respondents know the correct follow up time of clubfoot management. In case of knowledge of parents’ roles in the treatment of clubfoot about 91.2%, parents have knowledge weekly visit for treatment and 86.3% know the plaster care where 52.9% (n=54) parents have lack of knowledge about how to use the brace Conclusion: There is need to improve the communication skills of clinicians/health care providers offering treatment to children with clubfoot at the Clinics. Need to share information with the parents about the condition. Finally, there is need to emphasize of educating parents about plaster care and how to use brace. DOI: http://dx.doi.org/10.3329/cmoshmcj.v14i1.22882 Chatt Maa Shi Hosp Med Coll J; Vol.14 (1); Jan 2015; Page 42-46


2021 ◽  
Vol 9 ◽  
Author(s):  
Babar S. Hasan ◽  
Muneera A. Rasheed ◽  
Asra Wahid ◽  
Raman Krishna Kumar ◽  
Liesl Zuhlke

Along with inadequate access to high-quality care, competing health priorities, fragile health systems, and conflicts, there is an associated delay in evidence generation and research from LMICs. Lack of basic epidemiologic understanding of the disease burden in these regions poses a significant knowledge gap as solutions can only be developed and sustained if the scope of the problem is accurately defined. Congenital heart disease (CHD), for example, is the most common birth defect in children. The prevalence of CHD from 1990 to 2017 has progressively increased by 18.7% and more than 90% of children with CHD are born in Low and Middle-Income Countries (LMICs). If diagnosed and managed in a timely manner, as in high-income countries (HICs), most children lead a healthy life and achieve adulthood. However, children with CHD in LMICs have limited care available with subsequent impact on survival. The large disparity in global health research focus on this complex disease makes it a solid paradigm to shape the debate. Despite many challenges, an essential aspect of improving research in LMICs is the realization and ownership of the problem around paucity of local evidence by patients, health care providers, academic centers, and governments in these countries. We have created a theory of change model to address these challenges at a micro- (individual patient or physician or institutions delivering health care) and a macro- (government and health ministries) level, presenting suggested solutions for these complex problems. All stakeholders in the society, from government bodies, health ministries, and systems, to frontline healthcare workers and patients, need to be invested in addressing the local health problems and significantly increase data to define and improve the gaps in care in LMICs. Moreover, interventions can be designed for a more collaborative and effective HIC-LMIC and LMIC-LMIC partnership to increase resources, capacity building, and representation for long-term productivity.


2021 ◽  
Author(s):  
Brenda Kitilya ◽  
Erica Sanga ◽  
George PrayGod ◽  
Robert Peck ◽  
Bazil B Kavishe ◽  
...  

Abstract BackgroundPeople Living with HIV (PLWH) have low levels of physical activity. Understanding of perceptions, facilitators and barriers of physical activity in this population is of importance for future perspectives in developing contextual based intervention to improve physical activity in PLWH. MethodThis study explored perceptions, facilitators and barriers of physical activity in PLWH using sixteen in-depth interviews and three focus group discussions conducted in Mwanza, Tanzania. The interviews and discussions were audio recorded, transcribed and translated into English. Transcripts were coded and analysed deductively using thematic content analysis. The themes were interpreted and presented using the social ecological model. ResultsForty-three PLWH age 23-61 years old participated in this study. The findings showed that, PLWH perceived physical activity was beneficial to their health and that their perceptions and practices were rooted within the existing gender stereotypes and roles in the community. In addition to that, house-chores and income generating activities were perceived as sufficient physical activity to achieve adequate levels of physical activity. As facilitators, social support and interactions from family and friends were appraised positively as motivating factors of physical activity in this population. Indeed, at individual to community/environmental levels, PLWH reported barriers of physical activity were lack of time, money, and availability of facilities, as well as lack of social groups participating in physical activity in the communities and inadequate information on physical activity from health care providers at ART clinics. HIV disease was not reported as a main barrier of physical activity but rather stipulated from family members as a reason not to support physical activity in PLWH. ConclusionThe findings demonstrated differing perceptions, facilitators and barriers of physical activity among PLWH. Interventions addressing physical activity awareness, gender stereotypes and roles relating to physical activity performances from individual to community level, building supportive environment and infrastructures are needed to elevate physical activity levels in PLWH particularly in low and -middle income countries.


Sign in / Sign up

Export Citation Format

Share Document