Safety and caregiver satisfaction with gastrostomy in patients with Ataxia Telangiectasia

Lefton-Greif, Maureen A; Crawford, Thomas O; McGrath-Morrow, Sharon; Carson, Kathryn A; Lederman, Howard M

doi:10.1186/1750-1172-6-23

Orphanet Journal of Rare Diseases

Table 1 Characteristics of patients tolerating gastrostomy tube (GT) placement and patients with early mortality following GT placement

From: Safety and caregiver satisfaction with gastrostomy in patients with Ataxia Telangiectasia

Pt.	Sex	Age GT Placed(yrs)	Years Post GT	BMI Z-Score¹	A-T Neurologic Score²	Dysphagia³	Immunologic Status		Reason(s) for GT	Alive at Time of Survey	Cause of Death
							IgA	IgG
Patients tolerating GT placement
1	F	10	<1			No	Normal	Deficient	Nutrition	Yes
2	M	15	<1	-1.76	35	Yes: P	Deficient	Normal	Nutrition, GER treated w/nissen fundoplication	Yes
3	M	6	1	0.90		No	Normal	Deficient	Nutrition, GER, pulmonary infections	Yes
4	F	10	1	-6.23	68	No	Normal	Deficient	Nutrition	Yes
5	M	12	1	-2.77	51	No	Deficient	Normal	Nutrition	Yes
6	F	13	1			Yes: P	Normal	Normal	Nutrition, dysphagia	Yes
7	F	15	1	-0.44	40	No	Deficient	Deficient	Nutrition	Yes
8	M	15	1	-5.72	36	No	Normal	Normal	Nutrition, dysphagia	Yes
9	M	10	2	-8.17	59	No	Deficient	Normal	Nutrition	Yes
10	M	10	3			No	Deficient	Normal	Nutrition, cancer	Yes
11	M	13	3	-0.65	38	Yes: P	Deficient	Normal	Nutrition, LL pneumonia	Yes
12	M	10	4	-4.25	32	Yes: A	Deficient	Normal	Nutrition, dysphagia	Yes
13	M	14	4	-4.42	22	Yes: A	Deficient	Normal	Nutrition, dysphagia	Yes
14	M	16	4		41	Yes: A	Deficient	Normal	Nutrition, dysphagia	No	Leukemia, lung complications
15	M	10	5	-0.79	47	Yes: A	Deficient	Deficient	Nutrition, dysphagia	No	Burkitt lymphoma; lung complications; recurrent aspiration
16	F	12	5	-7.57	39	Yes: P	Deficient	Normal	Nutrition, dysphagia	No	Lung complications, failure to thrive, recurrent aspiration
17	M	13	5	-3.39	53	Yes: P	Deficient	Deficient	Nutrition, dysphagia	Yes
18	M	15	6			No	Deficient	Normal	Nutrition	No	Non-Hodgkin Lymphoma T cell
19	M	17	6			Yes: A, R	Deficient	Normal	Nutrition	No	Aspiration pneumonia
20	M	5	8			No	Normal	Deficient		No	Hodgkin lymphoma
21	F	11	8	-3.12	35	No	Normal	Normal	Nutrition	Yes
22	M	17	8	-5.03	21	Yes: P, R	Normal	Normal	Nutrition, dysphagia	No	T-Cell Lymphoma, lung complications
23	M	7	9			No	Deficient	Normal	Nutrition	Yes
24	M	15	9	-11.89	19	Yes: P	Deficient	Deficient		No	Congestive heart failure
25	F	6	11			No	Deficient	Normal	Nutrition, recurrent lung infections	No	Congestive heart failure, lung disease
Patients with early mortality following GT placement
1	F	22	0	-7.03	50	Yes: P, R	Normal	Normal	Nutrition (10 lb weight loss/3 yrs), dysphagia, recurrent pneumonia	No	Did not tolerate GT feedings, pneumonia, and respiratory failure,
2	F	25	0	-1.10	53	Yes: P	Not Done	Not Done	Nutrition (10 lb weight loss/1 yr), dysphagia, chronic cough, declining respiratory function (FVC = 20% predicted)	No	Did not tolerate GT feedings, pneumothorax, and respiratory failure
3	M	27	0	-7.78	15	Yes: P, R	Deficient	Normal	Nutrition (16 lb weight loss/1 yr), dysphagia	No	Did not tolerate GT feedings, pneumonia, pneumothorax, and respiratory failure

¹BMI Z-scores were obtained less than 2 years before GT placement.
²A-T neurologic scores were obtained less than 2 years before or after GT placement
³Dysphagia was defined as Videofluoroscopic Swallow Study findings of Penetration (P), Aspiration (A) or Post-Swallow Residue (R).
Abbr: BMI, body mass index

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ISSN: 1750-1172

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