Current practices and barriers in gastrostomy indication in amyotrophic lateral sclerosis: a survey of ALS care teams in The Netherlands

Figures & data

Table 1 Timing of gastrostomy indication.

Clinical indicators	Respondents, n (%)
Malnutrition/weight loss	29 (100)
Dysphagia	29 (100)
Prolonged and effortful meals	29 (100)
Recurrent chest infections	27 (93)
Insufficient intake of liquids	24 (83)
Low vital capacity	24 (83)
Decreased appetite	19 (65)
Dependency on others	10 (34)
Hypermetabolism	2 (7)
Oral hygiene	2 (7)
Criteria/cutoff values^a
Cutoff values for malnutrition/weight loss ^b
≥ 10% weight loss in last 3-6 months	22 (76)
≥ 5% weight loss in last 3-6 months	11 (37)
≥ 10% premorbid weight loss	10 (34)
BMI ≤ 18,5	7 (24)
≥ 5% premorbid weight loss	5 (17)
BMI ≤ 20	4 (14)
No explicit cutoff value	2 (7)
Guidelines	Respondents, n(%)
Dutch guideline PEG placement for patients with ALS (ALS Center Netherlands 2010)	29 (100)
Motor neurone disease: assessment and management (NICE NG42)	2 (7)
Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition (NICE CG32)	1 (3)
EFNS guidelines on the clinical management of ALS (EFNS 2012)	0
The care of the patient with ALS: Drug, nutritional, and respiratory therapies (AAN 2009)	0
Other
Guideline of ALS care team or affiliated hospital/ rehabilitation center	15 (55)

n = 29. ^a All questions on criteria/cutoff values for the clinical indicators were open questions, except for malnutrition/weight loss for which we provided a choice between seven options based on existing guidelines and relevant literature.

^bMultiple answers were possible. BMI: body mass index.

Table 2 Physician goals of gastrostomy placement.

Goals	Description	Respondents, n (%)
Optimize nutritional status	… to prevent weight loss and unnecessary muscle loss, and ensure adequate intake of energy, food, liquids, and medication.	29 (100)
Ensure safe food-intake	… to prevent choking, pneumonia, and other respiratory infections due to aspiration.	21 (72)
Reduce effort of meals	… to decrease energy cost, time loss, strain on patient and caregiver, and anxiety over food intake, and provide more time to enjoy what can be eaten and social aspects of eating.	16 (59)
Optimize quality of life		7 (24)
Prolong survival		2 (7)

n = 29. Multiple answers were possible.

Table 3 Initiating discussion about gastrostomy.

Decision-making	Respondents, n (%)
First introduction
Early after diagnosis	15 (52)
At indication	14 (48)
Involvement in decision-making process
Family	29 (100)
ALS care team members ^a
Speech therapist	29 (100)
Dietician	29 (100)
Social worker	9 (31)
Occupational therapist	8 (28)
Physiotherapist	7 (24)
Psychologist	3 (10)
ALS care team during team meeting	3 (10)
Other healthcare professionals ^a
Gastroenterologist	15 (52)
Pulmonologist	13 (45)
General practitioner	7 (24)
Radiologist	6 (21)
Others (i.e. neurologist or nurse specialist, otorhinolaryngologist, anesthetist, case-manager palliative care team, homecare team)	8 (28)
Information provided to support decision-making on gastrostomy
Website of ALS Center Netherlands	25 (86)
Brochures from ALS care team	17 (59)

n = 29.

^aMultiple answers were possible.

Table 4 Selection criteria for preferred method of gastrostomy placement: PEG or PRG.

Criteria	Description	PEG, n (%)	PRG, n (%)
Physician preference	… for one method (PEG or PRG) because this is the “first choice”, “standard”, or “preferred” method of placement of the physician and/or hospital affiliated with the ALS care team.	15 (52)	5 (17)
Availability of service	… may play a role, in the case of PEG because it is the only available method at the local hospital affiliated with the ALS care team, with PRG available at the regional university medical center; or because there is only collaboration with a radiologist in the case of PRG.	4 (14)	2 (7)
Lower risk of complications	… due to the procedure and less frequent probe changes.	5 (17)
Contraindication PEG	… due to impaired respiratory capacity or health, or previously failed PEG placement.		17 (59)
Patient preference ^a	… for PEG over PRG because probe changes are needed less frequently; or PRG over PEG because conscious sedation is not needed during the procedure making the procedure less threatening, anxiety inducing, and uncomfortable in their perception, and this also enables patients to postpone decision-making on gastrostomy.	2 (7)	7 (24)

n = 29. PEG: Percutaneous endoscopic gastrostomy; PRG: Percutaneous radiological gastrostomy. Multiple answers were possible.

^a Two respondents mentioned patient preferences for both PEG and PRG; thus seven physicians mentioned in total mentioned patient preferences in relation to method of placement.

Table 5 Barriers in indication and decision-making.

Barriers	Description	Respondent quotes	Respondents, n (%)
Experienced barriers			23 (69)
Organization
Organizational barriers	… because of the high number of HCP’s and departments involved, lack of expertise with ALS in regional hospitals, and time-consuming referral processes when method of placement is not available locally	“Many patients prefer to do this nearby. I would prefer the ALS Center because of their experience, care and good aftercare. Away from the ALS Center, I often find there aren't enough opportunities to have a short, fast and clear discussion about what the problems are, how these can best be dealt with and how the aftercare can best be arranged. I get bogged down with assistants, secretaries, insufficient communication etc.” (Respondent 12) “First of all, the patient must be registered in the right place and then the dietician must provide proper guidance with the correct information from the hospital where the procedure is to be performed. PEG is done in our hospital, but PRG is not and that requires more energy and time investment on our part to get it right”. (Respondent 26)	5 (17)
Procedure
Uncertainty over timing of indication and intervention	… complicating discussion with patient and family, and placement (i.e. not too early or too late), because of lack of clear cutoff values, interrelated indicators, and unpredictable disease progression	“What does pose a problem is timing. Sometimes there are apparent indications for PEG/PRG whereby it doesn't have to be used for feeding up until death, on the other hand there is sometimes a fairly sudden progression of swallowing problems/weight loss or breathing problems that require intervention at short notice”. (Respondent 3) “It is sometimes difficult to discuss at the right time when you do not know how quick the progress will be”. (Respondent 28) “It is a combination of ‘relative’ indicators”. (Respondent 36)	9 (31)
Uncertainty over risk of complications depending on method of placement (PEG or PRG)		“At other times, there are also complaints/problems after placement of PEG/PRG which (temporarily) reduce functioning/well-being. It is unclear how often this occurs in ALS patients and whether there is a difference between PEG/PRG”. (Respondent 3)	1 (3)
Patient
Promoting patient readiness to make a decision on gastrostomy	… was most frequently reported as a barrier in relation to postponement of decision-making, i.e. unwillingness or inability of some patients to discuss the topic and make a decision on gastrostomy, which could result in placement that was too late when the patient eventually accepted the necessity of gastrostomy. But some physicians also reported struggling to accept patients’ choice when they rejected gastrostomy in the face of, according to their physician, obvious clinical need	“Discussing this is not difficult, but getting people motivated in time is difficult. Many people are reluctant for (too long) a time and keep waiting and then suddenly turn out to want a tube at a much too late stage (where it previously had been firmly rejected time and time again). How to get more people motivated for this procedure at an earlier stage is a real question for me”.. (Respondent 12) “People are not always open to it, but I do discuss it with them. However, it remains their choice, which can sometimes lead to unpleasant scenes”. (Respondent 46) “The patient also has a major say in their situation and sometimes wants something other than what is recommended”. (Respondent 64)	14 (48)
Frontotemporal dementia hindering process of decision-making		“It can be difficult when there is also FTD [frontotemporal dementia]”. (Respondent 45)	1 (3)
No barriers			9 (31)

n = 29. Multiple answers were possible.

Table 6 Physician support needs in indication gastrostomy.

Support needs	Description	Respondent quotes	Respondents, n (%)
Experienced support needs			17 (62)
Organization
Overcoming organizational hurdles	… to facilitate communication between different teams and healthcare professionals.	“I would like a broader network of places where the choice of PRG/PEG can be considered and discussed. I would like to see shorter lines of communication with the specialized home care provider dealing with the feeding tube (working on it). I think there could and should be a clearer network here, managed nationally but spread across the various regions”. (Respondent 12)	3 (10)
Procedure
More evidence-based indication	… resulting in more clarity on cutoff values, timing, and interrelationship of criteria, a decision tool, and an update of the current guideline including PRG.	“More specific interpretation of indications: when can one still wait (certainly with the increasing range of energy/protein-enriched foods), when is PEG/PRG appropriate, and at what time”. (Respondent 3) “An update of the [national] guideline would be appreciated”. (Respondent 20) “I would like to see a decision model that can predict when the patient will need a PEG tube based on e.g. type of ALS, survival, swallow score, BMI (or BMI difference score), duration of meals etc., so that the patient can be told: based on how things are now, you will need a PEG tube in 9 months”. (Respondent 35)	10 (35)
Patient
Tailored patient information	… that includes advantages and disadvantages of gastrostomy, stories of other patients, and more information on the intervention and taking care of the feeding tube.	“What are the advantages and disadvantages (quality of life gain seems to be mainly in subjective indicators such as stressful meal duration/exhaustion, in the case of swallowing problems there is often a clear advantage but weight preservation, for example, is not immediately noticeable for the patient at that moment)”. (Respondent 3) “Stories from experts - explanation of procedure, material, care”. (Respondent 28) “For the patient, I would like to see stories from people with similar problems, who can tell the patient about their own experiences and dilemmas related to the placement of a feeding tube”. (Respondent 31) “More opportunities to inform the patient before tube feeding is necessary, for example about the various possibilities for administering tube feeding”. (Respondent 64)	9 (31)
More attention for psychological factors		“More insight into the psychological factors that may play a role”. (Respondent 65)	1 (3)
No support needs			11 (38)

n = 29. Multiple answers possible.