Table 2 Thematic analysis of the QQ10 free-text answers

Layout

“I think it’s well set out in a fairly simple and effective format.”

“Where the table goes over the page, it would be helpful to repeat the headers. Page numbering would be helpful.”

“Sheets should be numbered and column headings should be repeated where they go onto 2 pages.”

“Questions about age etc. should be at the start.”

“Figure diagrams are a more direct indication of the type and location of pain than the written word.”

Content

Depth and detail

“Too much detail, cut down on the number of boxes, they overlap too much. Q5 has too many choices.”

“Seems quite straightforward.”

“Q9 (Do you feel back to the level of health you were at before you had PMR?) - if answer is no, ask why?”

Specificity to PMR

“PMR is not that specific. For me I sometimes ache and sometimes feel a bit down. Muscle power has diminished but that may be age.”

“Many things you ask could be for other reasons such as depression, arthritis, cancer etc. it’s not all PMR.”

“Some info on other conditions should be included e.g., I had had a stroke previously and PMR imposed symptoms on top of those resulting from that.”

“Some symptoms (like weakness and difficulty reaching things in cupboards) I already had from a shoulder injury it’s difficult to tell whether the PMR made it worse or not.”

“As everyone is different there should be room for an individual’s particular symptoms and concerns.”

“Q9 is irrelevant, no-one gets back to feeling as well as before.”

Heterogeneity

“Should pain/ache be quantified? Different people will have different meanings.”

“Some questions didn’t seem to fit my symptoms but I don’t think I’m very severely affected - time will tell.”

“PMR affects all of us in different ways and the questionnaire covers all aspects and does no harm even if some questions overlap.”

Where in the clinical pathway it would be most beneficial

“I think it’s an excellent questionnaire from the outset of a PMR diagnosis to a record of the PMR journey.”

“I think the questionnaire will be very helpful, especially to people at the beginning of their treatment when they probably have all of the problems listed. I would have been reassured to think the doctors knew how I was feeling.”

Specific items missing

“The side effects of prednisolone”

“Diabetes, fluid retention leading to lymphoedema”

“The area of pain”

“More questions about fatigue could be included. Skin/hair condition missed out.”

“Swelling of the joints is not mentioned (hands, wrists, feet and ankles).”

“No real questions about where the pain was or what I couldn’t do.”

“One of my main concerns at the start was inability to fasten my own bra - had to ask for help.”

Other concerns that could be included

“Concerns about recurrence are important.”

“You might like to know how the steroid treatment has helped/been successful.”

“It may be helpful to ask patients to put down aspects of their health that may not be PMR related but which they wish to discuss.”