What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Figures & data

Table 1 Participant demographics

Participant characteristics	Parameter
Age at interview (years)	Mean 60.5 (range 40–77)
Time from diagnosis to interview (months)	Mean 32.07 (range 2–93)
ALSFRS-R score (0, minimal physical function; 48, full physical function)	Mean 35.3 (range 22–47)
Gender	Male, 7 (50%)
	Female, 7 (50%)

Abbreviation: ALSFRS-R, Amyotrophic Lateral Sclerosis Functional Rating Scale- Revised.

Table 2 Interview themes and questions

Theme	Question
Experience with multidisciplinary care	A1. Can you tell me about receiving your diagnosis of ALS?
	B1. How did you access ALS services and information?
Decision-making activity	C1. What decisions have you had to make since your diagnosis?
	C2. Which were the most important decisions to you?
	D1. How did you make your decisions?
	D2. Who did you involve?
	D3. Who had the final say in your decisions?
	D4. Has this changed since your diagnosis?
	E1. What things do you feel you have control over? What things do you not?
	F1. How capable have you felt to make your decisions?
	F2. Have you ever wanted someone to make them on your behalf?
	Choose one health care decision:
	G1. What help have you had to make this decision?
	G2. What information did you receive about this treatment?
	G3. How did this information influence your decision?
	H2. What do you feel influenced your decisions?
Improvements to ALS care	I1. How could services for people with ALS be improved?

Abbreviation: ALS, amyotrophic lateral sclerosis.