Comparison of Feedback From Families of Patients With Neuromuscular Disorders and Malignant Tumors on Communications Among Doctors, Patients, and Family Members in Home Medical Care Settings

We conducted a cross-sectional mail-in survey of families with neuromuscular disorders (ND) or malignant tumors (MT) to compare their preferences for type of future communications in home medical care settings and their previous experience or lack of experience of doctor-patient communication (DPC) and doctor-family communication (DFC). We analyzed 23 families from those with ND and 41 from those with MT. Of 11 families with ND who had not experienced DFC, only 1 (9.1%) wanted future DFC, whereas of 8 families with MT who had not experienced DFC, 5 (62.5%) wanted future DFC (p = .04). Doctors who visit patients need to understand that fewer families with ND than those with MT want DFC, even when they have experienced it.