Add to ORKGThis report documents a mixed-method study examining the symptom profile and family experience of two rare life-limiting conditions. Data was collected across the UK, using a symptom diary designed for the study and qualitative interviews, informed by Grounded Theory
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
This report documents a mixed-method study examining the symptom profile and family experience of tw...
This report documents a mixed-method study examining the symptom profile and family experience of tw...
This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditi...
This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditi...
Aim: The aim was to describe the nature, frequency, severity and management challenges of symptoms ...
This thesis provides an account of a qualitative study that set out to understand more about the nee...
Aim: The aim was to describe the nature, frequency, severity and management challenges of symptoms i...
Aim: The aim was to describe the nature, frequency, severity and management challenges of symptoms ...
Title: The experiences of children diagnosed with a life-threatening or life-limiting illness Backgr...
Changing patterns of childhood deaths and survival from once-fatal medical conditions mean that many...
Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseas...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
This report documents a mixed-method study examining the symptom profile and family experience of tw...
This report documents a mixed-method study examining the symptom profile and family experience of tw...
This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditi...
This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditi...
Aim: The aim was to describe the nature, frequency, severity and management challenges of symptoms ...
This thesis provides an account of a qualitative study that set out to understand more about the nee...
Aim: The aim was to describe the nature, frequency, severity and management challenges of symptoms i...
Aim: The aim was to describe the nature, frequency, severity and management challenges of symptoms ...
Title: The experiences of children diagnosed with a life-threatening or life-limiting illness Backgr...
Changing patterns of childhood deaths and survival from once-fatal medical conditions mean that many...
Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseas...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterise...