Validation of ketogenic diet adherence questionnaire: Keto-check

The ketogenic diet is a therapeutic option to control drug-resistant epileptic seizures and has difficult compliance standards due to adverse effects, psychosocial factors, or dietary restriction.

Objective

To create and validate a ketogenic diet compliance questionnaire.

Methods

Methodological study, convergent care. The instrument was analyzed (construct validation) by five judges during two cycles of the Delphi technique. The judges assessed the relevance and clarity by using the Likert scale with three levels and made suggestions. The validation of the instrument was calculated using the agreement rate and content validity index (CVI). The application by two nutritionists made it possible to test reproducibility using the Kappa coefficient. When comparing the classification with a template developed by the health professionals who cared for the patients in question, the Pearson correlation and Fisher exact tests were used. For the reliability test, self-applied data were collected and evaluated using Cronbach Alpha coefficient.

Results

The questionnaire initially created with 11 multiple choice questions on a Likert scale was reduced to 10 questions with an agreement rate and the CVI classified as excellent after two rounds with judges. In the application of the tool, a kappa of 0.6087 was obtained, a Pearson that showed no significant difference between evaluators and a Cronbach α of 0.6483, with substantial consistency.

Conclusions

This work resulted in the creation of an unprecedented and reliable questionnaire on adherence to the national ketogenic diet. Further studies should be performed to extrapolate the use of this questionnaire in different populations.

Keywords
Diet; Ketogenic; Surveys and Questionnaires; Treatment Adherence and Compliance

	Characteristics	n°	%
Sex	F	5	100.0
Sex	Total	5	100.0
Place of professional activity	São Paulo	2	40.0
	Recife	3	60.0
	Total	5	100.0
Professional qualification title	Doctorate degree	2	40.0
	Master's degree	1	20.0
	Specialization	2	40.0
	Total	5	100.0
Knowledge area	Doctor	1	20.0
	Nutritionist	4	80.0
	Total	5	100.0
Professional practice area	Assistance	4	80.0
	Teaching and research	1	20.0
	Total	5	100.0

Question		Pertinence		Clarity
Question		First round	Second round	First round	Second round
1	CVI	0.9997	0.9997	0,8663	0,9997
1	% C	100	100	60	100
2	CVI	0.9997	0.9997	0.9330	0.9997
2	% C	100	100	80	100
3	CVI	0.9997	0.9997	0.8663	0.9997
3	% C	100	100	60	100
4	CVI	0.9997	0.9997	0.9330	0.9997
4	% C	100	100	80	100
5	CVI	0.9997	−	0.9330	−
5	% C	100	−	80	−
6	CVI	0.9997	0.9997	0.9330	0.8663
6	% C	100	80	80	100
7	CVI	0.9997	0.9997	0.6663	0.9997
7	% C	100	100	40	100
8	CVI	0.9997	0.9997	0.9330	0.9997
8	% C	100	100	80	100
9	CVI	0.9997	0.9997	0.9330	0.9997
9	% C	100	100	80	100
10	CVI	0.7997	0.9997	0.8663	0.9997
10	% C	60	100	80	100
11	CVI	0.9997	0.9997	0.9330	0.9997
11	% C	100	100	80	100
Categorization	CVI	0.9997		0.9997
Categorization	% C	100		100

Patient	Evaluator 1	Evaluator 2	Gold standard
1	Great	Great	Good
2	Great	Great	Good
3	Great	Good	Good
4	Great	Great	Good
5	Great	Great	Good
6	Great	Great	Good
7	Good	Good	Great
8	Great	Great	Good
9	Great	Great	Good

Characteristic		n	%
Age	0–2 years	8	17
	2–10 years	28	60
	10–18 years	8	17
	Adults	3	6
Time in the ketogenic diet	< 3 months	0	0
	3–6 months	6	13
	6–12 months	8	17
	>12 months	33	70

Question	Cronbach α
Q1	0.6529
Q2	0.6518
Q3	0.5794
Q4	0.5302
Q5	0.6118
Q6	0.6432
Q7	0.6545
Q8	0.5483
Q9	0.6394
Q10	0.6614

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E-mail: revista.arquivos@abneuro.org

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[1] Address for correspondence Lenycia de Cassya Lopes Neri (e-mail: lenycia@gmail.com).

KETO-CHECK - ASSESSMENT TOOL FOR KETOGENIC DIET ADHESION Next you will read 10 sentences. Circle the alternative that corresponds to how much you agree or disagree with the phrase in your reality and routine with your child or teenager.
I. After the beginning of the ketogenic diet, I realize that my child/adolescent has improved the quality of life in general (considering physical health, communication, and emotional and social life; positive effects on family dynamics; and learning and performance in therapies).	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
II. After the beginning of the ketogenic diet, I realize that the number and/or duration and/or intensity of epileptic seizures in my child/adolescent has decreased.	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
III. After starting the ketogenic diet, I measure my child's/adolescent's ketosis (in the blood or urine), and it remains in frank ketosis (in the purple urine strip: ++ or 80 mg/dL to +++ or 160 mg / dL OR in blood: 2–5 mmol).	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
IV. After starting the ketogenic diet, I weigh all the foods (raw) offered to my child/adolescent.	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
V. After the beginning of the ketogenic diet, my child/adolescent never ate food that was not prescribed by the nutritionist (there was never a cheat meal: sneaking or having someone else offer food that is not allowed or using more or less of the ingredients then the recommended).	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
VI. After the beginning of the ketogenic diet, all medications that my child/adolescent uses were exchanged for sugar-free medicines.	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
VII. I attend all appointments scheduled with a nutritionist and neurologist.	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
VIII. After starting the ketogenic diet, I make notes in a notebook daily with food consumed, number of seizures, measured ketosis, and complications (fever, vomiting, refusal to eat).	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
IX. After starting the ketogenic diet, I always read the labels (carbohydrates, proteins, sugars) of all industrialized products and I always ask the nutritionist if such food/product is allowed before offering this product to my child/teenager.	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
X. I cook all my child's meals at home. I always try to vary preparations and look for new recipes.	1- Strongly disagree 2- Partially disagree 3- I do not know how to answer 4- Partially agree 5- I totally agree
TOTAL POINTS - ADD CIRCULATED NUMBERS
• Insufficient adherence: 10 to 35 points • Good adherence: 36 to 45 points • Excellent adherence: 45 to 50 points

KETO-CHECK - FERRAMENTA DE AVALIAÇÃO DA ADESÃO A DIETA CETOGENICA A seguir você vai ler 10 frases. Circule a alternativa que corresponde ao quanto você concorda ou não com a frase na sua realidade e rotina com sua criança ou adolescente.
I. Após o início da dieta cetogênica, eu percebo que minha criança/adolescente melhorou a qualidade de vida de maneira geral (considerando saúde física, comunicação, e vida emocional e social; efeitos positivos na dinâmica familiar; aprendizado e rendimento nas terapias).	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
II. Após o início da dieta cetogênica, eu percebo que diminuíram número e/ou duração e/ou intensidade de crises epilépticas na minha criança/adolescente.	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
III. Após o início da dieta cetogênica, eu realizo aferição da cetose (no sangue ou na urina) da minha criança/adolescente e esta mantém-se em cetose franca (na fita de urina roxinha: ++ ou 80 mg/dL a +++ ou 160 mg/dL OU no sangue: 2–5 mmol).	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
IV. Após o início da dieta cetogênica, eu realizo pesagem de todos os alimentos (crus) oferecidos para minha criança/adolescente.	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
V. Após o início da dieta cetogênica, minha criança/adolescente nunca comeu alimento fora da prescrição do nutricionista (nunca fugiu à dieta: comer escondido ou outra pessoa oferecer alimentos não permitidos ou usar maior ou menor quantidade de ingredientes do que o recomendade).	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
VI. Após o início da dieta cetogênica, todos os medicamentos que minha criança/adolescente utiliza foram trocados por versões sem açúcar.	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
VII. Eu compareço a todas as consultas agendadas com nutricionista e neurologista.	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
VIII. Após o início da dieta cetogênica, eu realizo anotações em um caderno diariamente com os alimentos consumidos, o número de crises, cetose aferida, e intercorrências (febre, vômito, recusa alimentar).	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
IX. Após o início da dieta cetogênica, eu sempre leio os rótulos (carboidratos, proteínas, açúcares) de todos os produtos industrializados e sempre questiono ao nutricionista se estes são permitidos antes de oferecê-los para minha criança/adolescente.	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
X. Eu cozinho em casa todas as refeições da minha criança. Sempre procuro variar preparações e buscar novas receitas.	1- Discordo totalmente 2- Discordo parcialmente 3- Não sei responder 4- Concordo parcialmente 5- Concordo totalmente
TOTAL PONTOS – SOMAR NÚMEROS CIRCULADOS
• Adesão insuficiente: 10 a 35 pontos • Boa adesão: 36 a 45 pontos • Excelente adesão: 45 a 50 pontos