Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease
The low-carbohydrate ketogenic diet (LCKD) has attracted increased attention in recent years as a potential treatment option for individuals with McArdle disease (glycogen storage disease type V), and despite the absence of strong scientific evidence of the LCKD’s benefits, increased numbers of indi...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-02-01
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| Series: | Nutrients |
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| Online Access: | https://www.mdpi.com/2072-6643/15/4/843 |
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| author | Nicoline Løkken Nicol C. Voermans Linda K. Andersen Walaa Karazi Stacey L. Reason Heidi Zweers Gustav Wilms Alfredo Santalla Edward Susanibar Alejandro Lucia John Vissing |
| author_facet | Nicoline Løkken Nicol C. Voermans Linda K. Andersen Walaa Karazi Stacey L. Reason Heidi Zweers Gustav Wilms Alfredo Santalla Edward Susanibar Alejandro Lucia John Vissing |
| author_sort | Nicoline Løkken |
| collection | DOAJ |
| description | The low-carbohydrate ketogenic diet (LCKD) has attracted increased attention in recent years as a potential treatment option for individuals with McArdle disease (glycogen storage disease type V), and despite the absence of strong scientific evidence of the LCKD’s benefits, increased numbers of individuals with McArdle disease have tried a LCKD. The objective of this study was to collect patient-reported experiences with a LCKD. We aimed to estimate the immediate prevalence of individuals that had tried a LCKD in an international McArdle disease cohort, and we aimed to report on the patient-reported experiences with the diet, both positive and negative. A total of 183 responses were collected from individuals with McArdle disease from 18 countries. We found that one-third of the cohort had tried a LCKD, and almost 90% experienced some degree of positive effect, with the most prominent effects on McArdle disease-related core symptoms (e.g., activity intolerance, muscle pain, and muscle fatigue). Adverse effects were rare and generally rated as mild to moderate. These patient-reported findings underline the need for randomized clinical trials to decisively determine if a LCKD is a suitable nutritional strategy for patients with McArdle disease. The results from this study can prompt and contribute to the design of such a clinical trial. |
| first_indexed | 2024-03-11T08:20:00Z |
| format | Article |
| id | doaj.art-83a661f2c0684702bb0ab02089bbaf1c |
| institution | Directory Open Access Journal |
| issn | 2072-6643 |
| language | English |
| last_indexed | 2024-03-11T08:20:00Z |
| publishDate | 2023-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Nutrients |
| spelling | doaj.art-83a661f2c0684702bb0ab02089bbaf1c2023-11-16T22:29:44ZengMDPI AGNutrients2072-66432023-02-0115484310.3390/nu15040843Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle DiseaseNicoline Løkken0Nicol C. Voermans1Linda K. Andersen2Walaa Karazi3Stacey L. Reason4Heidi Zweers5Gustav Wilms6Alfredo Santalla7Edward Susanibar8Alejandro Lucia9John Vissing10Copenhagen Neuromuscular Center, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, DK-2100 Copenhagen, DenmarkThe Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Nijmegen Medical Centre, 6525 GA Nijmegen, The NetherlandsCopenhagen Neuromuscular Center, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, DK-2100 Copenhagen, DenmarkThe Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Nijmegen Medical Centre, 6525 GA Nijmegen, The NetherlandsInternational Association for Muscle Glycogen Storage Disease, Torrance, CA 90505, USADepartment of Gastroenterology and Hepatology-Dietetics, Radboudumc, 6500 HB Nijmegen, The NetherlandsCopenhagen Neuromuscular Center, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, DK-2100 Copenhagen, DenmarkDepartment of Sport and Computer Science, Section of Physical Education and Sports, Faculty of Sport, Universidad Pablo de Olavide, 41013 Seville, SpainCopenhagen Neuromuscular Center, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, DK-2100 Copenhagen, DenmarkFaculty of Sport Sciences, Universidad Europea de Madrid, 28670 Madrid, SpainCopenhagen Neuromuscular Center, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, DK-2100 Copenhagen, DenmarkThe low-carbohydrate ketogenic diet (LCKD) has attracted increased attention in recent years as a potential treatment option for individuals with McArdle disease (glycogen storage disease type V), and despite the absence of strong scientific evidence of the LCKD’s benefits, increased numbers of individuals with McArdle disease have tried a LCKD. The objective of this study was to collect patient-reported experiences with a LCKD. We aimed to estimate the immediate prevalence of individuals that had tried a LCKD in an international McArdle disease cohort, and we aimed to report on the patient-reported experiences with the diet, both positive and negative. A total of 183 responses were collected from individuals with McArdle disease from 18 countries. We found that one-third of the cohort had tried a LCKD, and almost 90% experienced some degree of positive effect, with the most prominent effects on McArdle disease-related core symptoms (e.g., activity intolerance, muscle pain, and muscle fatigue). Adverse effects were rare and generally rated as mild to moderate. These patient-reported findings underline the need for randomized clinical trials to decisively determine if a LCKD is a suitable nutritional strategy for patients with McArdle disease. The results from this study can prompt and contribute to the design of such a clinical trial.https://www.mdpi.com/2072-6643/15/4/843McArdle diseaseketogenic dietlow carbohydrate ketogenic dietglycogen storage disease type Vsurveypatient-reported experiences |
| spellingShingle | Nicoline Løkken Nicol C. Voermans Linda K. Andersen Walaa Karazi Stacey L. Reason Heidi Zweers Gustav Wilms Alfredo Santalla Edward Susanibar Alejandro Lucia John Vissing Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease Nutrients McArdle disease ketogenic diet low carbohydrate ketogenic diet glycogen storage disease type V survey patient-reported experiences |
| title | Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease |
| title_full | Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease |
| title_fullStr | Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease |
| title_full_unstemmed | Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease |
| title_short | Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease |
| title_sort | patient reported experiences with a low carbohydrate ketogenic diet an international survey in patients with mcardle disease |
| topic | McArdle disease ketogenic diet low carbohydrate ketogenic diet glycogen storage disease type V survey patient-reported experiences |
| url | https://www.mdpi.com/2072-6643/15/4/843 |
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