Khalil H, et al. The role of scoping reviews in reducing research waste. J Clin Epidemiol. 2022;152:30–5. https://doi.org/10.1016/j.jclinepi.2022.09.012.

Article  PubMed  Google Scholar 

Treweek S, Miyakoda V, Burke D, Shiely F. ‘Getting it wrong most of the time? Comparing trialists’ choice of primary outcome with what patients and health professionals want’, Trials. 2022;23(1):537. https://doi.org/10.1186/s13063-022-06348-z.

Article  PubMed  Google Scholar 

Gargon E, Williamson PR, Altman DG, Blazeby JM, Clarke M. The COMET Initiative database: progress and activities from 2011 to 2013. Trials. 2014;15(1):279. https://doi.org/10.1186/1745-6215-15-279.

Article  PubMed  PubMed Central  Google Scholar 

P. R. Williamson et al., ‘The COMET Handbook: version 1.0’, Trials, vol. 18, no. S3, p. 280, Jun. 2017, https://doi.org/10.1186/s13063-017-1978-4.

Health Service Executive Research and Development, ‘Knowledge Translation, Dissemination, and Impact: A Practical Guide for Researchers. Guide No 8: Patient and Public Involvement in HSE Research.’ Research and Development, Health Service Executive., 2021. Accessed: Aug. 15, 2023. [Online]. Available: https://hseresearch.ie/wp-content/uploads/2021/12/Guide-no-8-Patient-and-Public-Involvement-in-HSE-Research.pdf

Dodd S, Gorst SL, Young A, Lucas SW, Williamson PR. Patient participation impacts outcome domain selection in core outcome sets for research: an updated systematic review. J Clin Epidemiol. 2023;158:127–33. https://doi.org/10.1016/j.jclinepi.2023.03.022.

Article  PubMed  Google Scholar 

Sjödahl Hammarlund C, Nilsson MH, Hagell P. Measuring outcomes in Parkinson’s disease: a multi-perspective concept mapping study. Qual Life Res. 2012. https://doi.org/10.1007/s11136-011-9995-3.

Article  PubMed  Google Scholar 

de Roos P, et al. A consensus set of outcomes for Parkinson’s disease from the international consortium for health outcomes measurement. J Park Dis. 2017;7(3):533–43. https://doi.org/10.3233/JPD-161055.

Article  Google Scholar 

Suttrup I, Warnecke T. Dysphagia in Parkinson’s disease. Dysphagia. 2016;31(1):24–32. https://doi.org/10.1007/s00455-015-9671-9.

Article  PubMed  Google Scholar 

Kalf JG, de Swart BJM, Bloem BR, Munneke M. Prevalence of oropharyngeal dysphagia in Parkinson’s disease: a meta-analysis. Parkinsonism Relat Disord. 2012;18(4):311–5. https://doi.org/10.1016/j.parkreldis.2011.11.006.

Article  PubMed  CAS  Google Scholar 

Fernandez HH, Lapane KL. Predictors of mortality among nursing home residents with a diagnosis of Parkinson’s disease. Med Sci Monit Int Med J Exp Clin Res. 2002;8(4):241–6.

Google Scholar 

M. E. Groher and M. A. Crary, Dysphagia: clinical management in adults and children, Second edition. St. Louis, Missouri: Elsevier, 2016.

Hobson P, Meara J. Mortality and quality of death certification in a cohort of patients with Parkinson’s disease and matched controls in North Wales, UK at 18 years: a community-based cohort study. BMJ Open. 2018;8(2):1–7. https://doi.org/10.1136/bmjopen-2017-018969.

Article  Google Scholar 

Hirschwald J, Hofacker J, Duncan S, Walshe M. Swallowing outcomes in dysphagia interventions in Parkinson’s disease: a scoping review. BMJ Evid-Based Med. 2023. https://doi.org/10.1136/bmjebm-2022-112082.

Article  PubMed  Google Scholar 

van Hooren MRA, Vos R, Florie MGMH, Pilz W, Kremer B, Baijens LWJ. Swallowing assessment in Parkinson’s disease: patient and investigator reported outcome measures are not aligned. Dysphagia. 2021. https://doi.org/10.1007/s00455-020-10201-3.

Article  PubMed  Google Scholar 

Hirschwald J, Duncan S, Warnecke T, Boyle G, Regan J, Walshe M. Development of a core outcome set for dysphagia interventions in Parkinson’s disease (COS-DIP): study protocol. BMJ Open. 2024;14(2): e076350. https://doi.org/10.1136/bmjopen-2023-076350.

Article  PubMed  PubMed Central  Google Scholar 

Sharma A, et al. A consensus-based checklist for reporting of survey studies (CROSS). J Gen Intern Med. 2021;36(10):3179–87. https://doi.org/10.1007/s11606-021-06737-1.

Article  PubMed  PubMed Central  Google Scholar 

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57. https://doi.org/10.1093/intqhc/mzm042.

Article  PubMed  Google Scholar 

P. C. Bruce, A. Bruce, and P. Gedeck, Practical statistics for data scientists: 50+ essential concepts using R and Python, Second edition. Sebastopol, CA: O’Reilly Media, Inc, 2020.

A. Field, Discovering statistics using SPSS: and sex, drugs and rock’n’roll, 2. ed., Reprinted. in ISM, Introducing statistical methods. London: SAGE Publ, 2005.

Keeley T, et al. The use of qualitative methods to inform Delphi surveys in core outcome set development. Trials. 2016;17(1):230. https://doi.org/10.1186/s13063-016-1356-7.

Article  PubMed  PubMed Central  CAS  Google Scholar 

Vears DF, Gillam L. Inductive content analysis: a guide for beginning qualitative researchers. Focus Health Prof Educ Multi-Prof J. 2022;23(1):111–27. https://doi.org/10.11157/fohpe.v23i1.544.

Article  Google Scholar 

Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107–15. https://doi.org/10.1111/j.1365-2648.2007.04569.x.

Article  PubMed  Google Scholar 

J. Hirschwald, J. Hofacker, S. Duncan, R. Karir, and M. Walshe, ‘Exposing gaps in trial design: a scoping review of outcomes measured and omitted in dysphagia intervention trials in Parkinson’s disease’, presented at the 31. Annual Meeting of the Dysphagia Research Society, San Francisco, USA, Mar. 15, 2023. [Online]. Available: https://doi.org/10.1007/s00455-024-10740-z

Rosenbek JC, Robbins JA, Roecker EB, Coyle JL, Wood JL. A penetration-aspiration scale. Dysphagia. 1996;11(2):93–8. https://doi.org/10.1007/BF00417897.

Article  PubMed  CAS  Google Scholar 

Curtis JA, Dakin AE, Troche MS. Respiratory–swallow coordination training and voluntary cough skill training: a single-subject treatment study in a person with Parkinson’s Disease. J Speech Lang Hear Res. 2020;63(2):472–86. https://doi.org/10.1044/2019_JSLHR-19-00207.

Article  PubMed  Google Scholar 

Pitts T, Bolser D, Rosenbek J, Troche M, Okun MS, Sapienza C. Impact of expiratory muscle strength training on voluntary cough and swallow function in Parkinson disease. Chest. 2009. https://doi.org/10.1378/chest.08-1389.

Article  PubMed  PubMed Central  Google Scholar 

Hewlett SA. Patients and clinicians have different perspectives on outcomes in arthritis. J Rheumatol. 2003;30(4):877–9.

PubMed  Google Scholar 

Sathanapally H, et al. Priorities of patients with multimorbidity and of clinicians regarding treatment and health outcomes: a systematic mixed studies review. BMJ Open. 2020;10(2): e033445. https://doi.org/10.1136/bmjopen-2019-033445.

Article  PubMed  PubMed Central  Google Scholar 

Hirschwald J, Finnegan L, Hofacker J, Walshe M. Underserved groups in dysphagia intervention trials in Parkinson’s disease: a scoping review. Ageing Res Rev. 2023. https://doi.org/10.1016/j.arr.2023.102150.

Article  PubMed  Google Scholar 

Gargon E, Williamson PR, Young B. Improving core outcome set development: qualitative interviews with developers provided pointers to inform guidance. J Clin Epidemiol. 2017;86:140–52. https://doi.org/10.1016/j.jclinepi.2017.04.024.

Article  PubMed  PubMed Central  Google Scholar