Telehealth as part of specialized ALS care: feasibility and user experiences with “ALS home-monitoring and coaching”

Figures & data

Figure 1 The continuous personalized care design of ALS Home-monitoring and Coaching.

Figure 2 Flowchart of users of ALS home-monitoring and coaching.

Figure 3 Months of follow-up per patient. *Started July 2016 (pilot), E: End-of-life phase, D: Dropout.

Table 1 Patient characteristics.

Characteristic	All patients (N = 50)	N	Prevalent patients (N = 18)	N	Incident patients (N = 32)	N
Gender, male n(%)	32 (64,0)	50	11 (61.1)	18	21 (65.6)	32
Age (years), mean(SD)	61.4 (13.0)	50	56.3 (15.1)	18	64.2 (11.0)	32
Level of education^a, n(%)		34		16		18
Low	16 (47.1)		9 (56.3)		7 (38.9)
High	18 (52.9)		7 (43.8)		11 (61.1)
Diagnosis, n(%)		50		18		32
ALS	38 (76.0)		11 (61.1)		27 (84.4)
PMA	12 (24.0)		7 (38.9)		5 (15.6)
Site of onset, n(%)		46		17		29
Bulbar	13 (28.3)		3 (17.6)		10 (34.5)
Spinal	33 (71.7)		14 (82.4)		19 (65.5)
ALSFRS-R at diagnosis, mean (SD)	42.0 (3.7)	43	42.9 (2.6)	14	41.6 (4.1)	29
ALSFRS-R at start monitoring, mean (SD)	38.3 (8.1)	48	33.8 (9.1)	18	41.0 (6.1)	30
Time between diagnosis and start monitoring (months), median (IQR)	2.4 (1.4-14.3)	48	19.7 (10.6-44.5)	18	1.6 (1.3-2.4)	30

^aLevel of education was classified as low (none, grade school, high school and technical or trade school) and high (University degree or Graduate school). ALSFRS-R = ALS Functional Rating Scale Revised. SD = Standard deviation. IQR = interquartile range.

Table 2 Patient survey results.

Survey item	n (%)	Total (N = 23)
I experience the use of telehealth as easy.	19 (83)	23
I experience the use of telehealth as burdensome.	3 (13)	23
I experience the use of telehealth as time-consuming.	2 (9)	23
I experience the use of telehealth as helpful in care.	19 (83)	23
I succeeded in logging onto my electronic patient record and reading the personal feedback and information in the e-consult.	20 (87)	23
I experience logging onto the electronic patient record as easy.	11 (55)	20
I experience receiving information through the electronic patient record as positive.	18 (90)	20
I experience receiving personalized feedback as positive.	19 (95)	20
Inserting and seeing data about how I am functioning was a positive experience.	17 (74)	23
I experience more control over care.	20 (87)	23
Telehealth helps me to make decisions about care.	13 (59)	22
I believe that care with telehealth is better than care without it.	18 (82)	22
I intend to keep using telehealth.	22 (96)	23
I would recommend telehealth to other patients.	22 (96)	23

Table 3 Healthcare professional survey results.

Survey question	Responses
	Regularly	Sometimes	(Almost) never
How often do you use the well-being data to prepare for consultations?	4/9	3/9	2/9
How often do you use the body weight data to prepare for consultations?	6/9	0/9	3/9
How often do you use the functional status data to prepare for consultations?	6/9	1/9	2/9
How often do you have a consultation due to a referral by the nurse practitioner?	7/9	2/9	0/9
Survey statement	Responses
	(Totally) agree	Neutral	(Totally) disagree
The use of telehealth reduces the workload of healthcare professionals.	2/9	5/9	2/9
Telehealth is of added value to usual ALS care.	9/9	0/9	0/9
I would recommend the use of telehealth to other healthcare professionals.	9/9	0/9	0/9

Table 4 Overview of themes regarding patients’ experiences with telehealth, supported by quotes.

Topic	Theme	Description	Quotes
Negative experiences	Log-in issues	Some of the patients experienced logging into the electronic patient record with their digital ID as a barrier for reading the feedback in their e-consultations. Most patients, however, did not perceive this as a barrier.	“A hassle with the digital ID, it takes four steps before you find out what it’s about.” Patient 2 “Logging in is difficult with the digital ID.” Patient 10
	Confronting experiences	Self-monitoring of health status and specifically the functional status assessment, was experienced as confronting by some of the patients in the early disease stages. This was due to the answer options of the ALSFRS-R showing the worsening of the disease yet to come. However, over time patients got used to the idea and no longer experienced it as confronting. Furthermore, patients generally had no interest in the graphs and the decline their data showed.	“At the start it was a bit confrontational. You see things and think: ‘is that what is going to happen?’. On the other hand, you get used to it the more often you do it.” Patient 1 “It is like a falling stock market, you are simply not happy about it. I understand that it is great for science, but it is useless for the patient.” Patient 6
Positive experiences	User-friendliness	In general, patients were very satisfied with the ALS app, because it was easy to use and worked well. Some patients did have some minor technical complaints (notifications did not repeat, app-screen did not rotate with phone).	“Very user-friendly. Nothing to comment on. Graphs look clean, well laid out.” Patient 1
	Low burden	The majority of patients reported that self-monitoring cost very little time and was not burdensome. Patients felt that they got much more in return compared to the amount of time and effort that was required.	“It is so easy… a daily routine. More of a burden, but you get more in return. On balance, the end result is always positive; despite requiring something from me, I have the feeling that I get a lot more out of it than if I did not do it.” Patient 1
	Self-reflection	A benefit of self-monitoring reported by patients was that it helped them reflect on their mood and feelings.	“The greatest advantage is that you become aware of how you are doing, and that’s good. When I am aware that I am feeling really good or even slightly worse, those are the moments I use the app.” Patient 2 “Actually choosing a fixed moment of the day to reflect on that day. How am I feeling and why? Because you don’t always know what the cause is and this makes you think about it. A moment of reflection.” Patient 12
	Increased perceived control	Patients experienced more control over their healthcare due to telehealth. Patients reported that the use of telehealth facilitated communication with the ALS care team, which helped them to better indicate which topics they wanted to discuss or focus on.	“I think that by monitoring myself, I am able to give others more information to make decisions about me. I am in control and can enable others to observe me better.” Patient 1 “It is an easy way for me to pass things on to the physician. I tell them what the problem is and the hospital indicates what is useful. So I am in control without having to possess the knowledge. I just want advice. This makes it more problem-driven and up-to-date. And I like that.” Patient 10
	Continuity of care/ reassurance	At home, patients experienced the feeling of being monitored continuously by the ALS care team in between visits, which felt personal and reassuring. Patients also found it a comforting thought to know that the ALS care team would intervene when the disease would worsen.	“You really have the feeling that there is continuous interaction, that someone is keeping an eye on you. You are no longer counting the days from one consultation to another.” Patient 2 “That’s what I find ideal. We will not be going again in three months’ time, because if the app shows in a month that I am not doing well, the hospital takes the initiative. I have experienced this and I like it. This means I do not have to wonder ‘should I call the physician?’, because if the physician is worried they will call me. Now that’s what I call service.” Patient 10 “I notice that the measurements are being read and that the care team knows how I am doing from day to day.” Patient 11
	Flexible consultations	Continuous monitoring allowed for more flexible consultations, which patients were highly satisfied about. Patients liked that it reduced the amount of unnecessary visits and travel burden.	“My last appointment was 6 months ago, i.e. the routine visit. I find that smart, because if it is not necessary, then it is not necessary.” Patient 1 “For now we have agreed with the physician not to plan a new appointment but to do that on the basis of the app. If no tests are necessary, there is no point, it is only an extra burden.” Patient 7 “You don’t feel you are going for no good reason. You have some control over that.” Patient 12