Working towards patient orientated outcome assessment in normal pressure hydrocephalus, what is the most important?

OBJECTIVE To date, there is no standard outcome assessment scale for shunt treatment in normal pressure hydrocephalus (NPH). In designing such scale, the relative weight of each of the common presentations of the condition from the patient's or his/her carer's point of view should be taken into consideration. METHODS A questionnaire was sent to 24 patients treated for NPH and their family/carer, assessing the patient and carer categorization of the preoperative main complaint, the weight they give to each of the common presentations of NPH and their satisfaction with treatment. RESULTS Twenty-two patients and 20 carers replied. Gait disturbance was the main complaint from both patient's (86%) and carer's (75%) point of view. Similarly, gait disturbance was considered as the most important problem that needs improvement by both patients (77%) and carers (65%). Incontinence was considered the second most important area by 11 (50%) patients and seven (35%) carers. When asked to quantify their satisfaction out of 10, patients had a mean of 7.2 while carers gave a mean of 7.5. Comparing subjective perspective of improvement with that of objective improvement on 10 m walking test and neuropsychological assessment, all patients who improved objectively were perceived as improved to a satisfactory degree by carers. CONCLUSION Walking/balance should be given far greater weight than other components of the NPH triad in future outcome assessment scales in accordance with patient/family perception.