Stigma, both enacted and internalized, is part of the illness experience of many chronic conditions / diseases and has been found to increase psychological distress, lower self-esteem, and impact social engagement lowering quality of life (QOL). Stigma among pediatric patients is of particular concern due to its potential impact on identity formation. Using patient data from the online FD/MAS Alliance Patient Registry (FDMASAPR), this study seeks to 1) determine levels of enacted and self-stigma in a pediatric population of fibrous dysplasia (FD) / McCune Albright syndrome (MAS) patients and 2) to explore the relationship between stigma and anxiety and depression.
This is a cross sectional analysis of deidentified self-report data from 18 pediatric patients. Key analytic variables include the Neuro-QOL stigma short form, the Hospital Anxiety and Depression Scale (HADS), diagnostic category and craniofacial involvement, and select demographics. https://www.selleckchem.com/products/6-thio-dg.html Sample means and score distributions are examined. Bivariate rs can be a useful tool in efforts to improve the QOL of patients.
This study establishes the illness experience of pediatric patients with FD / MAS is impacted by stigma and suggests they should be regularly screened for stigma and psychological distress. It supports the integration of clinical psychologists/ therapists in regular patient care, referral of families to advocacy organizations, and indicates that rare disease patient registries can be a useful tool in efforts to improve the QOL of patients.
The majority of people with cancer have at least one other chronic health condition. With each additional chronic disease, the complexity of their care increases, as does the potential for negative outcomes including premature death. In this paper, we describe cancer patients' clinical complexity (i.e., multimorbidity; MMB) in order to inform strategic efforts to improve care and outcomes for people with cancer of all types and commonly occurring chronic diseases.
We conducted a population-based, retrospective cohort study of adults diagnosed with cancer between 2003 and 2013 (N = 601,331) identified in Ontario, Canada healthcare administrative data. During a five to 15-year follow-up period (through March 2018), we identified up to 16 co-occurring conditions and patient outcomes for the cohort, including health service utilization and death.
MMB was extremely common, affecting more than 91% of people with cancer. Nearly one quarter (23%) of the population had five or more co-occurring conditions. While we saw no differences in MMB between sexes, MMB prevalence and level increased with age. MMB prevalence and type of co-occurring conditions also varied by cancer type. Overall, MMB was associated with higher rates of health service utilization and mortality, regardless of other patient characteristics, and specific conditions differentially impacted these rates.
People with cancer are likely to have at least one other chronic medical condition and the presence of MMB negatively affects health service utilization and risk of premature death. These findings can help motivate and inform health system advances to improve care quality and outcomes for people with cancer and MMB.
People with cancer are likely to have at least one other chronic medical condition and the presence of MMB negatively affects health service utilization and risk of premature death. These findings can help motivate and inform health system advances to improve care quality and outcomes for people with cancer and MMB.
Over 90,000 total knee replacement (TKR) procedures are performed annually in the United Kingdom (UK). Patients awaiting TKR face long delays whilst enduring severe pain and functional limitations. Almost 20% of patients who undergo TKR are not satisfied post-operatively. Optimising pre-operative TKR education and prehabilitation could help improve patient outcomes pre- and post-operatively; however, current pre-operative TKR care varies widely. Definitive evidence on the optimal content and delivery of pre-operative TKR care is lacking. This study aimed to develop evidence- and consensus-based recommendations on pre-operative TKR education and prehabilitation.
A UK-based, three-round, online modified Delphi study was conducted with a 60-member expert panel. All panellists had experience of TKR services as patients (n= 30) or professionals (n= 30). Round 1 included initial recommendations developed from a mixed methods rapid review. Panellists rated the importance of each item on a five-point Likert scaleis modified Delphi study developed a comprehensive set of recommendations that represent a useful resource for guiding decision-making on the content and delivery of pre-operative TKR education and prehabilitation. The recommendations will need to be interpreted and reviewed periodically in light of emerging evidence.
This modified Delphi study developed a comprehensive set of recommendations that represent a useful resource for guiding decision-making on the content and delivery of pre-operative TKR education and prehabilitation. The recommendations will need to be interpreted and reviewed periodically in light of emerging evidence.
Acromegaly is a rare disease caused by high serum levels of growth hormone (GH) and insulin-like growth factor 1 (IGF-1), often originating from a pituitary adenoma. Spinal and peripheral joint abnormalities are caused by these hormonal hypersecretions. In particular, the response to GH is involved in the onset of ossification of the spinal ligament in vitro, especially ossification of the posterior longitudinal ligament (OPLL). However, because acromegaly and OPLL are rare diseases, we seldom encounter them in combination. To the best of our knowledge in the English-language literature, this is the first reported case of acromegaly presenting with thoracic myelopathy due to OPLL.
A 47-year-old woman presented with lower extremity weakness and paresthesia, gait disorder, and bladder disorder without any trauma. The patient's most remarkable symptom was paraplegia, and we diagnosed myelopathy due to cervical and thoracic OPLL. Furthermore, we suspected acromegaly because of the characteristic facial features, and we found a pituitary adenoma by contrast-enhanced MRI.
Stigma, both enacted and internalized, is part of the illness experience of many chronic conditions / diseases and has been found to increase psychological distress, lower self-esteem, and impact social engagement lowering quality of life (QOL). Stigma among pediatric patients is of particular concern due to its potential impact on identity formation. Using patient data from the online FD/MAS Alliance Patient Registry (FDMASAPR), this study seeks to 1) determine levels of enacted and self-stigma in a pediatric population of fibrous dysplasia (FD) / McCune Albright syndrome (MAS) patients and 2) to explore the relationship between stigma and anxiety and depression.
This is a cross sectional analysis of deidentified self-report data from 18 pediatric patients. Key analytic variables include the Neuro-QOL stigma short form, the Hospital Anxiety and Depression Scale (HADS), diagnostic category and craniofacial involvement, and select demographics. https://www.selleckchem.com/products/6-thio-dg.html Sample means and score distributions are examined. Bivariate rs can be a useful tool in efforts to improve the QOL of patients.
This study establishes the illness experience of pediatric patients with FD / MAS is impacted by stigma and suggests they should be regularly screened for stigma and psychological distress. It supports the integration of clinical psychologists/ therapists in regular patient care, referral of families to advocacy organizations, and indicates that rare disease patient registries can be a useful tool in efforts to improve the QOL of patients.
The majority of people with cancer have at least one other chronic health condition. With each additional chronic disease, the complexity of their care increases, as does the potential for negative outcomes including premature death. In this paper, we describe cancer patients' clinical complexity (i.e., multimorbidity; MMB) in order to inform strategic efforts to improve care and outcomes for people with cancer of all types and commonly occurring chronic diseases.
We conducted a population-based, retrospective cohort study of adults diagnosed with cancer between 2003 and 2013 (N = 601,331) identified in Ontario, Canada healthcare administrative data. During a five to 15-year follow-up period (through March 2018), we identified up to 16 co-occurring conditions and patient outcomes for the cohort, including health service utilization and death.
MMB was extremely common, affecting more than 91% of people with cancer. Nearly one quarter (23%) of the population had five or more co-occurring conditions. While we saw no differences in MMB between sexes, MMB prevalence and level increased with age. MMB prevalence and type of co-occurring conditions also varied by cancer type. Overall, MMB was associated with higher rates of health service utilization and mortality, regardless of other patient characteristics, and specific conditions differentially impacted these rates.
People with cancer are likely to have at least one other chronic medical condition and the presence of MMB negatively affects health service utilization and risk of premature death. These findings can help motivate and inform health system advances to improve care quality and outcomes for people with cancer and MMB.
People with cancer are likely to have at least one other chronic medical condition and the presence of MMB negatively affects health service utilization and risk of premature death. These findings can help motivate and inform health system advances to improve care quality and outcomes for people with cancer and MMB.
Over 90,000 total knee replacement (TKR) procedures are performed annually in the United Kingdom (UK). Patients awaiting TKR face long delays whilst enduring severe pain and functional limitations. Almost 20% of patients who undergo TKR are not satisfied post-operatively. Optimising pre-operative TKR education and prehabilitation could help improve patient outcomes pre- and post-operatively; however, current pre-operative TKR care varies widely. Definitive evidence on the optimal content and delivery of pre-operative TKR care is lacking. This study aimed to develop evidence- and consensus-based recommendations on pre-operative TKR education and prehabilitation.
A UK-based, three-round, online modified Delphi study was conducted with a 60-member expert panel. All panellists had experience of TKR services as patients (n= 30) or professionals (n= 30). Round 1 included initial recommendations developed from a mixed methods rapid review. Panellists rated the importance of each item on a five-point Likert scaleis modified Delphi study developed a comprehensive set of recommendations that represent a useful resource for guiding decision-making on the content and delivery of pre-operative TKR education and prehabilitation. The recommendations will need to be interpreted and reviewed periodically in light of emerging evidence.
This modified Delphi study developed a comprehensive set of recommendations that represent a useful resource for guiding decision-making on the content and delivery of pre-operative TKR education and prehabilitation. The recommendations will need to be interpreted and reviewed periodically in light of emerging evidence.
Acromegaly is a rare disease caused by high serum levels of growth hormone (GH) and insulin-like growth factor 1 (IGF-1), often originating from a pituitary adenoma. Spinal and peripheral joint abnormalities are caused by these hormonal hypersecretions. In particular, the response to GH is involved in the onset of ossification of the spinal ligament in vitro, especially ossification of the posterior longitudinal ligament (OPLL). However, because acromegaly and OPLL are rare diseases, we seldom encounter them in combination. To the best of our knowledge in the English-language literature, this is the first reported case of acromegaly presenting with thoracic myelopathy due to OPLL.
A 47-year-old woman presented with lower extremity weakness and paresthesia, gait disorder, and bladder disorder without any trauma. The patient's most remarkable symptom was paraplegia, and we diagnosed myelopathy due to cervical and thoracic OPLL. Furthermore, we suspected acromegaly because of the characteristic facial features, and we found a pituitary adenoma by contrast-enhanced MRI.
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