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Chronic conditions in women: the development of a National Institutes of health framework
Rising rates of chronic conditions were cited as one of the key public health concerns in the Fiscal Year (FY) 2021 U.S. Senate and House of...
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The relationship of chronic disease conditions to mental and physical health among cancer survivors
PurposeThis study examined the relationship between the presence of chronic disease conditions and mental and physical health among cancer survivors...
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Chronic health conditions after childhood Langerhans cell histiocytosis: Results from the Swiss Childhood Cancer Survivor Study
PurposeLangerhans cell histiocytosis (LCH) is a rare disease characterized by dysregulated proliferation of myeloid marrow progenitors and subsequent...
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Loneliness and Its Predictors in Rare Versus Common Chronic Illnesses
BackgroundLoneliness is a growing public health concern associated with substantial negative mental and physical health outcomes. Loneliness is...
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Testing a model of benefit-finding and growth in youths with chronic health conditions
BackgroundThe experience of benefit-finding and growth (BFG), defined as perceiving positive life changes resulting from adversity, is increasingly...
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Barriers to accessing health care for people with chronic conditions: a qualitative interview study
BackgroundThere is a growing interest in redesigning healthcare systems to increase access to and coordination across care settings for people with...
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Randomized pilot trial of cell phone support to improve medication adherence among adolescents and young adults with chronic health conditions
IntroductionAdolescents and young adults (AYA) living with chronic medical conditions often struggle to develop medication adherence skills. This...
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Unmet supportive care needs in families of children with chronic health conditions: an Australian cross-sectional study
BackgroundThe aim of this study was to identify similarities and differences in the unmet supportive care needs (USCN) of families of children with...
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Internet-delivered cognitive behaviour therapy for chronic health conditions: self-guided versus team-guided
There is growing interest in offering Internet-delivered cognitive behaviour therapy (ICBT) to individuals with chronic health conditions, with this...
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The experiences and perceptions of people with chronic and rare diseases during political-economic sanctions in Iran: a qualitative study
BackgroundEconomic sanctions aim to exert pressure on political and economic foundations. Hypothesizing that sanctions might affect various aspects...
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Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey
BackgroundAlthough individually rare, collectively, rare conditions are common and affect a large number of people and are often chronic, life...
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A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial
BackgroundApproximately 50% of rare diseases have symptom onset during childhood. A high level of nursing care and an often uncertain prognosis put...
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Australian children living with rare diseases: health service use and barriers to accessing care
BackgroundChildren with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare. We aimed to...
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Consideration of oral health in rare disease expertise centres: a retrospective study on 39 rare diseases using text mining extraction method
BackgroundAround 8000 rare diseases are currently defined. In the context of individual vulnerability and more specifically the one induced by rare...
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A comprehensive exploration of gallbladder health: from common to rare imaging findings
This comprehensive review explores a wide range of imaging findings associated with the gallbladder (GB), from anatomic variants to rare diseases....
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Whole-exome sequencing of individuals from an isolated population under extreme conditions implicates rare risk variants of schizophrenia
Schizophrenia (SCZ), which affects approximately 1% of the world’s population, is a global public health concern. It is generally considered that the...
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The experience of caregiving for children with rare musculoskeletal conditions: a qualitative study in arthrogryposis multiplex congenita
BackgroundArthrogryposis multiplex congenita (AMC) is a group of rare musculoskeletal conditions that is associated with complex healthcare needs and...
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Age at diagnosis in patients with chronic congenital endocrine conditions: a regional cohort study from a reference center for rare diseases
BackgroundFor chronic congenital endocrine conditions, age at diagnosis is a key issue with implications for optimal management and psychological...
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Improving Interpretation of Evidence Relating to Quality of Life in Health Technology Assessments of Rare Disease Treatments
Rare diseases are often severe, debilitating, life-limiting conditions, many of which occur in childhood. These complex conditions have a wide range...
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Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop
BackgroundRare disease patients and carers report significant impacts on mental health but studies on UK populations have focussed on relatively few,...
