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