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Article ; Online: The Use of the Voice Trainer App for Vocal Control in People with a Degenerative Ataxia: A Pilot Intervention Study.

Knuijt, S / Nonnekes, J / van de Warrenburg, B P C / Nijkamp, M / Scholten, S / de Swart, B J M / Kalf, J G

2024

Abstract: Dysarthria is disabling in persons with degenerative ataxia. There is limited evidence for speech therapy interventions. In this pilot study, we used the Voice trainer app, which was originally developed for patients with Parkinson's disease, as a ... ...

Abstract	Dysarthria is disabling in persons with degenerative ataxia. There is limited evidence for speech therapy interventions. In this pilot study, we used the Voice trainer app, which was originally developed for patients with Parkinson's disease, as a feedback tool for vocal control. We hypothesized that patients with ataxic dysarthria would benefit from the Voice trainer app to better control their loudness and pitch, resulting in a lower speaking rate and better intelligibility. This intervention study consisted of five therapy sessions of 30 min within 3 weeks using the principles of the Pitch Limiting Voice Treatment. Patients received real-time visual feedback on loudness and pitch during the exercises. Besides, they were encouraged to practice at home or to use the Voice trainer in daily life. We used observer-rated and patient-rated outcome measures. The primary outcome measure was intelligibility, as measured by the Dutch sentence intelligibility test. Twenty-one out of 25 included patients with degenerative ataxia completed the therapy. We found no statistically significant improvements in intelligibility (p = .56). However, after the intervention, patients were speaking slower (p = .03) and the pause durations were longer (p < .001). The patients were satisfied about using the app. At the group level, we found no evidence for an effect of the Voice trainer app on intelligibility in degenerative ataxia. Because of the heterogeneity of ataxic dysarthria, a more tailor-made rather than generic intervention seems warranted.
Language	English
Publishing date	2024-01-29
Publishing country	United States
Document type	Journal Article
ZDB-ID	2112586-7
ISSN	1473-4230 ; 1473-4222
ISSN (online)	1473-4230
ISSN	1473-4222
DOI	10.1007/s12311-024-01662-5
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Article: Orofaryngeale slikstoornissen bij de ziekte van Parkinson.

Kalf, J G

Tijdschrift voor gerontologie en geriatrie

2014 Volume 45, Issue 5, Page(s) 282–289

Abstract: Oropharyngeal swallowing disorders in parkinson's disease: Parkinson's disease is one of the most common and best studied neurodegenerative diseases. The typical motor features, like hypokinesia and rigidity are also seen in chewing and swallowing, but ... ...

Abstract	Oropharyngeal swallowing disorders in parkinson's disease: Parkinson's disease is one of the most common and best studied neurodegenerative diseases. The typical motor features, like hypokinesia and rigidity are also seen in chewing and swallowing, but this 'hypokinetic dysphagia' is a complaint that generally occurs in the later stages of the disease. However, consequences as choking on liquid or food and very slow eating and drinking can contribute to a decrease of the quality of life and in combination with decreased coughing capacity cause aspiration pneumonia. Hypokinetic dysphagia can also contribute to drooling, but hypomimia is the best predictor of that complaint. Several validated questionnaires are available in Dutch to assess dysphagia complaints and their severity. The behavioural treatment consists of compensatory techniques, like adapting head posture to avoid liquid aspiration. But also training exercises can be helpful to overcome hypokinesia, similar to talking louder to overcome hypokinetic speech. Medical treatment, either with levodopa or deep brain surgery in general does not provide clinical improvement of swallowing.
Language	English
Publishing date	2014-10
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	604661-7
ISSN	1875-6832 ; 0167-9228
ISSN (online)	1875-6832
ISSN	0167-9228
DOI	10.1007/s12439-014-0090-4
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Article ; Online: Design of the PERSPECTIVE study: PERsonalized SPEeCh Therapy for actIVE conversation in Parkinson's disease (randomized controlled trial).

Maas, J J L / De Vries, N M / Bloem, B R / Kalf, J G

Trials

2022 Volume 23, Issue 1, Page(s) 274

Abstract: Objective: To evaluate the effectiveness of personalized and home-based speech therapy on quality of life, intelligibility, and social participation for people with Parkinson's disease (PD) who have a reduced intelligibility of speech.: Background: ... ...

Abstract	Objective: To evaluate the effectiveness of personalized and home-based speech therapy on quality of life, intelligibility, and social participation for people with Parkinson's disease (PD) who have a reduced intelligibility of speech. Background: Speech problems in PD have a profound negative impact on social interaction and quality of life. Evidence for speech therapy in PD is growing, but more work remains needed to explore its full potential. Efficacy exists for highly intensive standardized speech treatment programs, but not all patients can comply with this rather intense intervention, especially the more severely affected ones. Here, we aim to study the effectiveness of personalized and home-based (remote) speech therapy in PD on quality of life and speech. The intervention will be supported by a dedicated speech training app. We expect that this approach will improve speech intelligibility and quality of life in patients irrespective of disease stage. Methods: We will perform a single blind, randomized controlled trial, comparing 8 weeks of speech therapy to no intervention using a waiting list design. A total of 215 PD patients with problems in intelligibility will be recruited by 12 highly experienced speech therapists. All patients will be measured at baseline and after 8 weeks (primary endpoint). Additionally, the experimental group will be re-assessed one more time, after a wash-out period of 24 weeks. The control group will receive deferred treatment after 8 weeks, but without additional follow-up assessments. Our primary outcome is quality of life (as measured with PDQ-39). Secondary outcomes include speech and voice quality, intelligibility, severity of voice and speech complaints, and caregiver burden. Results: The inclusion of participants has started on March 1, 2019, and is expected to be finalized on April 1, 2021. We expect to have the first results in January 2022. Conclusions: We will investigate the effectiveness of speech therapy in PD. Particular strengths of our study include a randomized and single-blinded design, the personalized treatment approach, the inclusion of PD patients irrespective of disease stage or severity of the speech complaint, the long-term follow-up, the adequate power, and the use of a patient-relevant primary endpoint. This will allow us to draw firm conclusions about the effectiveness of personalized and remote speech therapy for PD patients in all disease stages. Trial registration: ClinicalTrials.gov NCT03963388 . Registered on May 24, 2019.
MeSH term(s)	Humans ; Parkinson Disease/complications ; Parkinson Disease/diagnosis ; Parkinson Disease/therapy ; Quality of Life ; Single-Blind Method ; Speech Therapy/methods ; Voice
Language	English
Publishing date	2022-04-08
Publishing country	England
Document type	Journal Article ; Randomized Controlled Trial
ZDB-ID	2040523-6
ISSN	1745-6215 ; 1468-6694 ; 1745-6215
ISSN (online)	1745-6215
ISSN	1468-6694 ; 1745-6215
DOI	10.1186/s13063-022-06160-9
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Article ; Online: Comparing videofluoroscopy and endoscopy to assess swallowing in bottle-fed young infants in the neonatal intensive care unit.

de Groot, S / van den Engel-Hoek, L / Kalf, J G / Harding, C

Journal of perinatology : official journal of the California Perinatal Association

2021 Volume 41, Issue 5, Page(s) 1201–1202

MeSH term(s)	Bottle Feeding ; Deglutition ; Endoscopy ; Humans ; Infant ; Infant, Newborn ; Intensive Care Units, Neonatal
Language	English
Publishing date	2021-03-09
Publishing country	United States
Document type	Letter
ZDB-ID	645021-0
ISSN	1476-5543 ; 0743-8346
ISSN (online)	1476-5543
ISSN	0743-8346
DOI	10.1038/s41372-021-00982-2
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Article ; Online: Bridging health technology assessment and healthcare quality improvement using international consortium of health outcomes measurement standard sets.

Kalf, Rachel R J / Zuidgeest, Marloes / Delnoij, Diana M J / Bouvy, Marcel L / Goettsch, Wim G

International journal of technology assessment in health care

2021 Volume 38, Issue 1, Page(s) e6

Abstract: Objective: Although health technology assessment (HTA) and healthcare quality improvement are distinct processes, a greater level of alignment in outcome measures used may increase the quality and efficiency of data collection. This study evaluates the ... ...

Abstract	Objective: Although health technology assessment (HTA) and healthcare quality improvement are distinct processes, a greater level of alignment in outcome measures used may increase the quality and efficiency of data collection. This study evaluates the agreement in outcome measures used in oncology for healthcare quality improvement and HTAs, and how these align to the International Consortium for Health Outcomes Measurement (ICHOM) standard sets. Methods: We conducted a cross-sectional comparative analysis of ICHOM sets focusing on oncological indications and publicly available measures for healthcare quality and HTA reports published by the National Health Care Institute from the Netherlands and the National Institute for Health and Care Excellence from the United Kingdom. Results: All ICHOM sets and HTAs used overall survival, whereas quality improvement used different survival estimates. Different progression estimates for cancer were used in HTAs, ICHOM sets, and quality improvement. Data on health-related quality of life (HRQoL) was recommended in all ICHOM sets and all HTAs, but selectively for quality improvement. In HTAs, generic HRQoL questionnaires were preferred, whereas, in quality improvement and ICHOM sets, disease-specific questionnaires were recommended. Unfavorable outcomes were included in all HTAs and all ICHOM sets, but not always for quality improvement. Conclusions: Although HTA and quality improvement use outcome measures from the same domains, a greater level of alignment seems possible. ICHOM may provide input on standardized outcome measures to support this alignment. However, residual discrepancies will remain due to the different objectives of HTA and quality improvement.
MeSH term(s)	Technology Assessment, Biomedical ; Quality Improvement ; Cross-Sectional Studies ; Quality of Life ; Quality of Health Care ; Delivery of Health Care ; Outcome Assessment, Health Care
Language	English
Publishing date	2021-12-21
Publishing country	England
Document type	Journal Article
ZDB-ID	632573-7
ISSN	1471-6348 ; 0266-4623
ISSN (online)	1471-6348
ISSN	0266-4623
DOI	10.1017/S0266462321000520
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Article ; Online: Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study.

Kalf, Rachel R J / Delnoij, Diana M J / Ryll, Bettina / Bouvy, Marcel L / Goettsch, Wim G

Journal of medical Internet research

2021 Volume 23, Issue 12, Page(s) e27497

Abstract: Background: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the ... ...

Abstract	Background: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful. Objective: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums. Methods: We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached. Results: Of the posts assessed, 36.7% (150/409) of posts on Melanoma International Forum, 45.1% (198/439) on MacMillan, and 35.4% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones. Conclusions: Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment.
MeSH term(s)	Humans ; Melanoma ; Quality of Life ; Social Media ; United Kingdom
Language	English
Publishing date	2021-12-07
Publishing country	Canada
Document type	Consensus Development Conference ; Journal Article ; Patient Education Handout ; Research Support, Non-U.S. Gov't
ZDB-ID	2028830-X
ISSN	1438-8871 ; 1439-4456
ISSN (online)	1438-8871
ISSN	1439-4456
DOI	10.2196/27497
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Article ; Online: Bridging the gap: Can International Consortium of Health Outcomes Measurement standard sets align outcomes accepted for regulatory and health technology assessment decision-making of oncology medicines.

Kalf, Rachel R J / Vreman, Rick A / Delnoij, Diana M J / Bouvy, Marcel L / Goettsch, Wim G

Pharmacology research & perspectives

2021 Volume 9, Issue 2, Page(s) e00742

Abstract: Standard outcome sets developed by the International Consortium for Health Outcomes Measurement (ICHOM) facilitate value-based health care in healthcare practice and have gained traction from regulators and Health Technology Assessment (HTA) agencies ... ...

Abstract	Standard outcome sets developed by the International Consortium for Health Outcomes Measurement (ICHOM) facilitate value-based health care in healthcare practice and have gained traction from regulators and Health Technology Assessment (HTA) agencies that regularly assess the value of new medicines. We aimed to assess the extent to which the outcomes used by regulators and HTA agencies are patient-relevant, by comparing these to ICHOM standard sets. We conducted a cross-sectional comparative analysis of ICHOM standard sets, and publicly available regulatory and HTA assessment guidelines. We focused on oncology due to many new medicines being developed, which are accompanied by substantial uncertainty regarding the relevance of these treatments for patients. A comparison of regulatory and HTA assessment guidelines, and ICHOM standard sets showed that both ICHOM and regulators stress the importance of disease-specific outcomes. On the other hand, HTA agencies have a stronger focus on generic outcomes in order to allow comparisons across disease areas. Overall, similar outcomes are relevant for market access, reimbursement, and in ICHOM standard sets. However, some differences are apparent, such as the acceptability of intermediate outcomes. These are recommended in ICHOM standard sets, but regulators are more likely to accept intermediate outcomes than HTA agencies. A greater level of alignment in outcomes accepted may enhance the efficiency of regulatory and HTA processes, and increase timely access to new medicines. ICHOM standard sets may help align these outcomes. However, some differences in outcomes used may remain due to the different purposes of regulatory and HTA decision-making.
MeSH term(s)	Antineoplastic Agents/therapeutic use ; Clinical Trials as Topic/standards ; Cross-Sectional Studies ; Decision Making, Organizational ; Drug Approval ; Humans ; Medical Oncology/standards ; Outcome Assessment, Health Care/standards ; Practice Guidelines as Topic ; Technology Assessment, Biomedical/standards ; Value-Based Purchasing/standards
Chemical Substances	Antineoplastic Agents
Language	English
Publishing date	2021-04-09
Publishing country	United States
Document type	Comparative Study ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2740389-0
ISSN	2052-1707 ; 2052-1707
ISSN (online)	2052-1707
ISSN	2052-1707
DOI	10.1002/prp2.742
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Article ; Online: Muscle MRI in Patients With Oculopharyngeal Muscular Dystrophy: A Longitudinal Study

Kroon, Rosemarie H M J M / Kalf, Johanna G / de Swart, Bert J M / Heskamp, Linda / de Rooy, Jacky W J / van Engelen, Baziel G M / Horlings, Corinne G C

Neurology

2023 Volume 102, Issue 1, Page(s) e207833

Abstract: Background and objectives: Oculopharyngeal muscular dystrophy (OPMD) is a rare progressive neuromuscular disease. MRI is one of the techniques that is used in neuromuscular disorders to evaluate muscle alterations. The aim of this study was to describe ... ...

Abstract	Background and objectives: Oculopharyngeal muscular dystrophy (OPMD) is a rare progressive neuromuscular disease. MRI is one of the techniques that is used in neuromuscular disorders to evaluate muscle alterations. The aim of this study was to describe the pattern of fatty infiltration of orofacial and leg muscles using quantitative muscle MRI in a large national cohort and to determine whether MRI can be used as an imaging biomarker of disease progression in OPMD. Methods: Patients with OPMD (18 years or older) were invited from the national neuromuscular database or by their treating physicians and were examined twice with an interval of 20 months, with quantitative MRI of orofacial and leg muscles to assess fatty infiltration which were compared with clinical measures. Results: In 43 patients with genetically confirmed OPMD, the muscles that were affected most severely were the tongue (mean fat fraction: 37.0%, SD 16.6), adductor magnus (31.9%; 27.1), and soleus (27.9%; 21.5) muscles. The rectus femoris and tibialis anterior muscles were least severely affected (mean fat fractions: 6.8%; SD 4.7, 7.5%; 5.9). Eleven of 14 significant correlations were found between fat fraction and a clinical task in the corresponding muscles ( Discussion: According to quantitative muscle MRI, the tongue, adductor magnus and soleus show the largest fat infiltration levels in patients with OPMD. Fat fractions increased in several orofacial and leg muscles over 20 months, with the largest fat fraction increase seen in the soleus. This study supports that this technique is sensitive enough to show worsening in fat fractions of orofacial and leg muscles and therefore a responsive biomarker for future clinical trials.
MeSH term(s)	Humans ; Muscular Dystrophy, Oculopharyngeal/diagnostic imaging ; Leg ; Magnetic Resonance Imaging ; Quadriceps Muscle ; Biomarkers
Chemical Substances	Biomarkers
Language	English
Publishing date	2023-12-14
Publishing country	United States
Document type	Journal Article
ZDB-ID	207147-2
ISSN	1526-632X ; 0028-3878
ISSN (online)	1526-632X
ISSN	0028-3878
DOI	10.1212/WNL.0000000000207833
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Article ; Online: Design of the PERSPECTIVE study

J. J. L. Maas / N. M. De Vries / B. R. Bloem / J. G. Kalf

Trials, Vol 23, Iss 1, Pp 1-

PERsonalized SPEeCh Therapy for actIVE conversation in Parkinson’s disease (randomized controlled trial)

2022 Volume 11

Abstract: Abstract Objective To evaluate the effectiveness of personalized and home-based speech therapy on quality of life, intelligibility, and social participation for people with Parkinson’s disease (PD) who have a reduced intelligibility of speech. Background ...

Abstract	Abstract Objective To evaluate the effectiveness of personalized and home-based speech therapy on quality of life, intelligibility, and social participation for people with Parkinson’s disease (PD) who have a reduced intelligibility of speech. Background Speech problems in PD have a profound negative impact on social interaction and quality of life. Evidence for speech therapy in PD is growing, but more work remains needed to explore its full potential. Efficacy exists for highly intensive standardized speech treatment programs, but not all patients can comply with this rather intense intervention, especially the more severely affected ones. Here, we aim to study the effectiveness of personalized and home-based (remote) speech therapy in PD on quality of life and speech. The intervention will be supported by a dedicated speech training app. We expect that this approach will improve speech intelligibility and quality of life in patients irrespective of disease stage. Methods We will perform a single blind, randomized controlled trial, comparing 8 weeks of speech therapy to no intervention using a waiting list design. A total of 215 PD patients with problems in intelligibility will be recruited by 12 highly experienced speech therapists. All patients will be measured at baseline and after 8 weeks (primary endpoint). Additionally, the experimental group will be re-assessed one more time, after a wash-out period of 24 weeks. The control group will receive deferred treatment after 8 weeks, but without additional follow-up assessments. Our primary outcome is quality of life (as measured with PDQ-39). Secondary outcomes include speech and voice quality, intelligibility, severity of voice and speech complaints, and caregiver burden. Results The inclusion of participants has started on March 1, 2019, and is expected to be finalized on April 1, 2021. We expect to have the first results in January 2022. Conclusions We will investigate the effectiveness of speech therapy in PD. Particular strengths of our study include a ...
Keywords	Parkinson’s disease ; Speech therapy ; Telemedicine ; Randomized controlled trial ; Medicine (General) ; R5-920
Subject code	410
Language	English
Publishing date	2022-04-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Development of the Experienced Communication in Dementia Questionnaire: A Qualitative Study.

Olthof-Nefkens, Maria W L J / Derksen, Els W C / de Swart, Bert J M / Nijhuis-van der Sanden, Maria W G / Kalf, Johanna G

Inquiry : a journal of medical care organization, provision and financing

2021 Volume 58, Page(s) 469580211028181

Abstract: Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of ... ...

Abstract	Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of this article is to describe the development of a questionnaire that measures the "experienced communication" of persons with dementia (ECD-P) as well as of their caregivers (ECD-C). Interviews were conducted with five person with dementia-caregiver dyads who had recently received a new communication intervention. Reflexive thematic analysis was performed on the transcripts using ATLAS.ti. Codes were created, categories and themes were identified, and items for the questionnaires were generated. Selection of items and response scales was done in collaboration with the same dyads. The final version was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. Analysis of the transcripts resulted in 212 codes and 17 categories within four themes: caregiver competence, social communication, communication difficulties in daily life, and experienced emotions during conversations. The final version of the ECD-P consists of part 1 with 22 items and 4-point Likert scales, and part 2 with two items and 1 to 10 scales. In the final ECD-C (proxy version), part 1 and part 2 are similar to the ECD-P, while a part 3 was added to assess caregivers' own perspective and emotions (five items). Based on the experiences of people with dementia and their caregivers, we constructed a face-valid questionnaire. This justifies future research to test its clinimetric characteristics.
MeSH term(s)	Caregivers ; Communication ; Dementia ; Humans ; Qualitative Research ; Surveys and Questionnaires
Language	English
Publishing date	2021-06-21
Publishing country	United States
Document type	Journal Article
ZDB-ID	42153-4
ISSN	1945-7243 ; 0046-9580
ISSN (online)	1945-7243
ISSN	0046-9580
DOI	10.1177/00469580211028181
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