Skip to main content

Table 7 Social Care Considerations for CLN2 disease, statements and consensus data

From: Guidelines on the diagnosis, clinical assessments, treatment and management for CLN2 disease patients

Statement Responders Evidence level Consensus
Adaptations and support for communication is essential and a speech and language expert should be involved in all patients with CLN2 41 NA 92
Considerations should always be made in order to maintain a patient’s activity and social interaction by aiding their mobility, communication abilities, and special considerations around loss of vision 41 NA 95
Considerations to teach patient alternative communication strategies and strategies for utilising audio sense following vision dysfunction may assist a patient in their ability to socialise 40 NA 92
Early use of medical aids such as orthoses, therapy chairs, standing and walking equipment supports mobility which improves quality of life 41 NA 92
Caregiver burden has a significant impact on families affected by CLN2, and appropriate tools should be used to capture this 41 D 92
Visual support is critical to maintaining function, and all measures should be employed to maintain visual ability 41 NA 86
Physical, occupational, speech, and other supporting therapy interventions are recommended for patients in order to maintain activity and the highest of quality of life 41 D 94