Quality of life and swallowing questionnaire for individuals with Parkinson's disease: development and validation

Abstract

The questionnaire developed is a valid, statistically appropriate and clinically effective self-administered instrument for individuals with PD.

Dysphagia and Quality of Life, Participation, and Inclusion Experiences and Outcomes for Adults and Children With Dysphagia: A Scoping Review

“…Reporting of recruitment was relatively poor: 22 studies provided either no or minimal recruitment data, scoring 0 or 1 on the QATSDD rating for that item. Furthermore, only five studies explicitly described stakeholder involvement in the study design with clients or steering groups (Ang et al, 2019;Carlozzi et al, 2016;Diniz et al, 2018;Karagiannis & Karagiannis, 2014;Remijn et al, 2019), indicating there was little input from people with dysphagia in research to date on dysphagiarelated quality of life (see Supplemental Material S3 for overall QATSDD scores). Almost all of the included studies (n = 95, 90%) related to dysphagia in populations with acquired conditions.…”

“…Overall, the SWAL-QOL questionnaire and/or the EAT-10 was used in 44 of the studies. In studies using the SWAL-QOL questionnaire, participants with dysphagia had significantly reduced quality of life across all domains (McHorney et al, 2002): burden, food selection, frequency of symptoms, eating, fear, fatigue, sleep, communication, mental health, social role, information, and quality of services (Carneiro et al, 2014;Diniz et al, 2018;Vogel et al, 2017).…”

“…et al (2018);Balandin et al (2009);da Costa Franceschini & Mourao (2015);Diniz et al (2018);Ekberg et al (2002);Farri et al (2007);Hellden et al (2018);Klinke et al (2013Klinke et al ( , 2014;Martino et al (2010);Medin, Larson, et al (2010);Miller et al (2006);Moloney & Walshe (2019);Nyberg et al (2018);Remijn et al (2019);Roy et al (2007); andTibbling & Gustafsson (1991) (b) Balandin et al (2009), Klinke et al (2013), McAuliffe et al (2017), and Yi et al (2019) (c) Alali et al (2018); Balandin et al (2009); Gustafsson & Theorell (1995); Jacobsson et al (2000); Klinke et al (2013); Mahant et al (2011); Medin, Windahl, et al (2010); and Moloney & Walshe (2018) (d) Ang et al (2019); Arslan et al (2019); Carlsson et al (2004); de Faria Gaspar et al (2015); Diniz et al (2018); Mahant et al (2011); Manor et al (2018); Medin, Larson, et al (2010); Milte et al (2017); Nyberg et al (2018); Paris et al (2013); Perry & McLaren (2003); Plowman-Prine et al (2009); Remijn et al (2019); Roy et al (2007); Shune & Linville (2019); and Stavroulakis et al (2016) (e) Ang et al (2019); Balandin et al (2009); Hellden et al (2018); Klinke et al (2013, 2014); Klugman & Ross (2002); Medin, Windahl, et al (2010); Milte et al (2017); Perry & McLaren (2003); and Seshadri et al (2018) (f) Alali et al (2018), Carlsson et al (2004), Johansson & Johansson (2009), Klinke et al (2013), Mahant et al (2011), Miller et al (2006), Moloney & Walshe (2018), and Shune & et al (2018), Carlozzi et al (2016), and Jones et al (2018) (b) Arslan et al (2019), Carneiro et al (2013, 2014), da Costa Franceschini & Mourao (2015), Hewett et al (2016), Hong & Yoo (2017), Jones et al (2018), J. S. Kim et al (2005), Leow et al (2010), McAuliffe et al (2017), Pierce et al (2016), Song et al (2020), Tabor et al (2016), Turley & Cohen (2009), van Hooren et al (2016), and Vogel et al (2014) (c) Carneiro et al (2013, 2014), J. S. Kim et al (2005), Leow et al (2010), Plowman-Prine et al (2009), Pontes et al (2017), and van Hooren et al (2016) [38, 58, 67, 73-76] (d) Carneiro et al (2013), P. H. Chen et al (2009), Colpaert et al (2017), Diniz et al (2018), Eslick & Talley (2008), Finger et al (2019), Hellden et al (2018), Jones et al (2018), Klugman & Ross (2002), LaDonna et al (2016), Leow et al (2010), Luchesi & Silveira (2018), Mahant et al (2011), Manor et al (2018), Moloney & Walshe (2019), Morisaki (2017), Paris et al (2013), Pierce et al (2016), Pitts et al (2019), Pontes et al (2017), Printza et al (2020), Roy et al (2007, 2018), and Vogel et al (2017) Dysphagia therapy effects on quality of life (a) No difference between different therapies on quality of life (b) Therapy had no impact on quality of life (c) Therapy improved quality of life (d) Therapy had a negative impact on quality of life (e) Self-taught methods to improve quality ...…”

Tools to assess the quality of life in patients with Parkinson’s disease: a systematic review

“…Previously, the psychometric properties of SCOPA-PS, SCOPA-Sleep, PDSS-2, and PFS, which evaluate the psychosocial component of PD, sleep problems, and the incidence of fatigue in the QoL, respectively, have been analyzed. In addition to these scales, we found scales on the impact of autonomic system dysfunction [84,85] (in particular, systematic research identifying specific scales for dysphagia in patients with PD [86]), on problems related to the risk of falling [79,80] and the phenomenon of freezing [87], on cognitive factors [88] (specifically, on apathy [89] and depression [90] and validated in patients with PD), and on the influence of pain on QoL [91].…”