Content Validity of the ADHD Rating Scale (ADHD RS-IV) and Adult ADHD Self-Report Scale (ASRS) in Phenylketonuria

Wyrwich, Kathleen W.; Shaffer, Shannon; Gries, Katharine; Auguste, Priscilla; Mooney, Kim Hart; Prasad, Suyash; Bilder, Deborah A.

doi:10.1177/2326409816639316

Kathleen W. Wyrwich Corresponding Author: Kathleen W. Wyrwich, Evidera, 7101 Wisconsin Avenue, Suite 1400, Bethesda, MD 20814, USA. Email: kathy.wyrwich@evidera.com

Evidera, Bethesda, MD, USA

Declaration of Conflicting Interests The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation.

Shannon Shaffer

Evidera, Bethesda, MD, USA

Declaration of Conflicting Interests The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation.

Katharine Gries

Evidera, Bethesda, MD, USA

Declaration of Conflicting Interests The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation.

Priscilla Auguste

Evidera, Bethesda, MD, USA

Declaration of Conflicting Interests The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation. Author’s Note Priscilla Auguste was formerly at Evidera, Bethesda, MD, USA. Kim Hart Mooney and Suyash Prasad were formerly at BioMarin Pharmaceutical, Novato, CA, USA.

Kim Hart Mooney

BioMarin Pharmaceutical, Novato, CA, USA

Declaration of Conflicting Interests The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation.

Suyash Prasad

BioMarin Pharmaceutical, Novato, CA, USA

Declaration of Conflicting Interests The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation. Author’s Note Priscilla Auguste was formerly at Evidera, Bethesda, MD, USA. Kim Hart Mooney and Suyash Prasad were formerly at BioMarin Pharmaceutical, Novato, CA, USA.

Deborah A. Bilder

Department of Psychiatry, University of Utah, Salt Lake City, UT, USA

Declaration of Conflicting Interests The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation.

Corresponding Author: Kathleen W. Wyrwich, Evidera, 7101 Wisconsin Avenue, Suite 1400, Bethesda, MD 20814, USA. Email: kathy.wyrwich@evidera.com

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Suyash Prasad and Kim Hart Mooney were employees of BioMarin Pharmaceutical at the time this study was conducted and received financial support in terms of salary and stock. Deborah Bilder is a consult to and a Steering Committee Member for BioMarin Pharmaceuticals. Kathleen Wyrwich, Priscilla Auguste, Shannon Shaffer, and Katharine Gries were employees of Evidera, who received financial support from BioMarin Pharmaceutical in connection with the study development and execution as well as the manuscript development. Deborah Bilder received financial support from BioMarin Pharmaceutical for study development. She received no financial support for work on the manuscript preparation.

Author’s Note

Priscilla Auguste was formerly at Evidera, Bethesda, MD, USA. Kim Hart Mooney and Suyash Prasad were formerly at BioMarin Pharmaceutical, Novato, CA, USA.

		Adult Participants,	Parents of Children	Children With
		n = 13	With PKU, n = 15	PKU, n = 15
Age, mean (SD), range		34.8 (8.3), 24-46	47.7 (7.3), 35-67	12.9 (3.1), 8-17
Male, n (%)		5 (38.5)	2 (13.3)	7 (46.7)
Race
	White, n (%)	13 (100)	14 (93.3)	14(93.3)
	Other, n (%)	0(0)	1 (6.7)	1 (6.7)
Marital status
	Single, n (%)	5 (38.5)	-
	Married, n (%)	7 (53.9)	12 (80.0)
	Divorced, n (%)	1 (7.7)	2 (l3.3)
	Separated, n (%)	-	1 (6.7)
Current living/domestic situation
	Living alone, n (%)	4 (30.8)	l (6.7)
	Living with a spouse, partner, family, or friends, n (%)	9 (69.2)	l4 (93.3)
Employment status
	Full-time work, n (%)	10 (76.9)	6 (40.0)
	Part-time work, n (%)	1 (7.7)	6 (40.0)
	Homemaker, n (%)	2(15.4)	3 (20.0)
Highest level of education
	Secondary/high school, n (%)	-	l (6.7)
	Some college, n (%)	5 (38.5)	5 (33.3)
	College degree, n (%)	6 (46.2)	5 (33.3)
	Postgraduate degree, n (%)	2(15.4)	4 (26.7)
Other existing diagnoses^a a Not mutually exclusive.
	Attention-deficit hyperactivity disorder (ADHD), n (%)	-		1 (6.7)
	Attention-deficit disorder (ADD), n (%)	1 (7.7)		2 (13.3)
	Autism, n (%)	-		1 (6.7)
	Learning disability, n (%)	3 (23.1)		3(20)
	Intellectual Disability, n (%)	1 (7.7)		1 (6.7)
	Seizures, n (%)	1 (7.7)		1 (6.7)
	Skin rashes or eczema, n (%)	2(15.4)		4 (26.7)
	Anxiety, n (%)	1 (7.7)		-
	Depression, n (%)	1 (7.7)		-
	Other mental health problem^b b Participant noted ‘‘seasonal affect disorder—still under diagnosing.’’ , n (%)	1 (7.7)		-
	Other health problem^c c Participant noted ‘‘gastrointestinal issues.’’ , n (%)	1 (7.7)		-
	None, n (%)	5 (38.5)		7 (46.7)
On a Phe restricted diet, n (%)		11 (84.6)		15 (100)

Key Symptoms^a a Key symptoms had at least 3 endorsements from either the adult group or the parent group.		Adult Reported (n = 13) n (%)	Parent reported for Child <18 Years Old, (n = 15), n (%)
Physical symptoms		12 (92%)	10 (67%)
	Tiredness/fatigue	6 (46%)	4 (27%)
	Skin rashes/eczema	3 (23%)	5 (33%)
	Headaches/migraine	4 (31%)	1 (7%)
	Tremor or jerking movements in	3 (23%)	2 (13%)
	the extremities/seizures
	Hunger	3 (23%)	3 (20%)
	Abnormal body odor	3 (23%)	1 (7%)
	Difficulty sleeping	3 (23%)	0 (0%)
Cognitive symptoms		11 (85%)	13 (87%)
	Difficulty concentrating	11 (85%)	9 (60%)
	Difficulty paying attention	7 (54%)	5 (33%)
	Difficulty focusing	5 (38%)	3 (20%)
	Becoming bored quickly	3 (23%)	4 (27%)
	Forgetful/poor memory	4 (31%)	2 (13%)
	Difficulty staying focused on a single	3 (23%)	2 (13%)
	activity/distractible
	Slow response time/processing	2 (15%)	3 (20%)
	slowly
Emotional, behavioral, or social		12 (92%)	12 (80%)
	symptoms
	Frustration	5 (38%)	0 (0%)
	Anxiety/nervousness	5 (38%)	1 (7%)
	Irritability/agitation	5 (38%)	4 (27%)
	Anger/short tempered/easily upset	4 (31%)	3 (20%)
	Active	3 (23%)	4 (27%)
	Moodiness/crankiness	3 (23%)	3 (20%)
	Bounces from one activity to another	3 (23%)	3 (20%)
	Difficulty in social situations	1 (8%)	4 (27%)
	Low motivation/lazy	3 (23%)	0 (0%)
	Stress	3 (23%)	0 (0%)
	Behavioral issues	0 (0%)	3 (20%)

[1] Corresponding Author: Kathleen W. Wyrwich, Evidera, 7101 Wisconsin Avenue, Suite 1400, Bethesda, MD 20814, USA. Email: kathy.wyrwich@evidera.com

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Content Validity of the ADHD Rating Scale (ADHD RS-IV) and Adult ADHD Self-Report Scale (ASRS) in Phenylketonuria

Abstract