Patient Reported Outcome Measures in multiple myeloma: real-time rePorTing to improve care

Full description

This is a feasibility study. The patient completes the MyPOS quality of life questionnaire, which should take 7 to 8 minutes to complete, either by tablet whilst in the waiting room for their appointment, online (by emailed link) within a week of their visit, or by hard copy, before 4 clinical visits. The patient indicates whether they completed the questionnaire on their own or with help from a friend/relative or a staff member. A summary of results of concern is generated from the Myeloma and Related Diseases Registry electronic database by
clicking a button and printing the summary. It is provided to the treating clinician by the study coordinator or clinic staff before the first 3 visits. The clinician is made aware that results from the questionnaire summary are to be taken into account in the patient's care by the study coordinator or by an explanatory statement left with the questionnaire summary for the clinician. Visits are:
T1: close to diagnosis, T2: T1 + 1 month, T3: T1 + 6 months, T4: T1 + 10 months.
After each of the first 3 visits the clinician completes an evaluation questionnaire to assess the feasibility of the intervention and after T3 the patient completes an evaluation questionnaire to assess the feasibility of the intervention.