Validity and reliability of the Mouth Handicap of Systemic Sclerosis questionnaire in a UK population

Abdouh, Ismail; Porter, Stephen; Fedele, Stefano; Ríordáin, Rícheal Ní

doi:10.1111/jop.13060

Cited by 4 publications

(7 citation statements)

References 23 publications

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“…The low response rate in healthcare surveys has been reported in the literature, and different explored methods have been employed to improve such obstacles including reminders and using online surveys rather than paper or postal surveys. However, similar findings have been previously reported in other cohort of patients with SSc that giving a response rate of 45.3% 30 . Such low response rate might be related to the length and complexity of the survey provided that can result in responded fatigue; hence, providing more convenience and flexibility by using digital surveys may result eliminating barriers that prevent respondents from accessing the surveys and help increasing the response rate.…”

Section: Discussionsupporting

confidence: 82%

Measuring the impact of systemic sclerosis on oral health‐related quality of life in a UK population

Abdouh

Porter

Fedele

et al. 2021

J Oral Pathology Medicine

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Background The objective of the present study was to identify the impact of systemic sclerosis (SSc) upon oral health‐related quality of life (OHRQoL) of affected individuals resident in the UK. Methods A total of 100 patients and their partners or carers were invited to complete questionnaires regarding the impact of SSc on quality of life and psychological well‐being using valid and reliable patient‐reported outcome measures (OHIP‐14, MHISS, OIDP, MDAS and HADS). A total of 50 patients with SSc and 18 partners or carers who acted as controls returned the completed questionnaires. Statistical analyses were performed for comparisons of different variables. Results All the mean scores of OHIP‐14 (SSc [16.5 ± 12.4] Vs controls [6.06 ± 7.6, p = 0.001]) and MHISS components were significantly higher in patients than those of control group (SSc [21.26 ± 12] Vs controls [4.8 ± 7.3, p < 0.0001]). Majority of OIDP mean scores were significantly worse in patients compared with controls [SSc (10 ± 8.7) Vs controls (1.72 ± 3.4, p < 0.0001)]. The mean of total MDAS [SSc (11.7 ± 5.3) Vs controls (9.5 ± 4.4)] and HADS scores were higher in patients compared to controls (SSc depression [4.8 ± 3.3] and anxiety [6 ± 4.6] Vs controls [3.7 ± 3.1] [4.7 ± 3.9]). Conclusions Although the present study is limited by the low response rate and its cross‐sectional design, present results highlighted that systemic sclerosis has a negative impact on OHRQoL of the affected individuals; hence, the evaluation of associated psychological impact including anxiety and depression symptoms is needed to better understand, monitor and evaluate the disease comorbidity in patients with SSc.

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Section: Discussionsupporting

confidence: 82%

Measuring the impact of systemic sclerosis on oral health‐related quality of life in a UK population

Abdouh

Porter

Fedele

et al. 2021

J Oral Pathology Medicine

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“… 36 Eleven studies provided a Cronbach's alpha value, and the internal consistency assessment was rated “very good” for methodological quality, while one (the Regional Oral Dryness Inventory) provided inter‐item correlations and was rated at “inadequate” quality 30 . All seven of the studies involving PROMs with more than one subscale provided an alpha value for each subscale 23,26,31,34,35,37 . Overall, five of the 12 PROMs received a rating of sufficient evidence of internal consistency (the Xerostomia Inventory [XI], the Mouth Handicap of Systemic Sclerosis questionnaire [MHSS], the Modified Oral Health Impact Profile‐14 [M‐OHIP], the Multidisciplinary Salivary Gland Society questionnaire [MSGS], and the Radbound Oral Motor Inventory for Parkinson's Disease [ROMP]) 18,21,34,35,37 .…”

Section: Resultsmentioning

confidence: 99%

“…All seven of the studies involving PROMs with more than one subscale provided an alpha value for each subscale 23,26,31,34,35,37 . Overall, five of the 12 PROMs received a rating of sufficient evidence of internal consistency (the Xerostomia Inventory [XI], the Mouth Handicap of Systemic Sclerosis questionnaire [MHSS], the Modified Oral Health Impact Profile‐14 [M‐OHIP], the Multidisciplinary Salivary Gland Society questionnaire [MSGS], and the Radbound Oral Motor Inventory for Parkinson's Disease [ROMP]) 18,21,34,35,37 . Six of the 12 PROMs received a rating of “indeterminate” due to no evaluation of structural validity, 19,25,26,30,31,33 while one (the Liverpool Sicca Index [LSI]) received a rating of “insufficient” due to a Cronbach's alpha level of <0.7 23 …”

Section: Resultsmentioning

confidence: 99%

“…30 All seven of the studies involving PROMs with more than one subscale provided an alpha value for each subscale. 23,26,31,34,35,37 18,21,34,35,37 Six of the 12 PROMs received a rating of "indeterminate" due to no evaluation of structural validity, 19,25,26,30,31,33 while one (the Liverpool Sicca Index [LSI]) received a rating of "insufficient" due to a Cronbach's alpha level of <0.7. 23 Test-retest reliability, or the extent to which patient scores remain stable during repeated measurements, was assessed in 10 of the 16 instruments (63%, Figure 3).…”

Section: Content Validitymentioning

confidence: 99%

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Patient Reported Outcome Measures for Salivary Function: A Systematic Review

2023

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Objective: A number of patient-reported outcome measures (PROMs) assess quality of life and symptom severity in patients with salivary gland dysfunction, but many vary in the extent of validation and domain types addressed. We identified PROMs validated to measure salivary gland function and analyzed key properties.Data Sources: PubMed, Web of Science, Embase, PsycInfo, and CINAHL. Review Methods: A systematic review was performed using Preferred Reporting Items for Systematic Reviews and Metaanalyses (PRISMA) guidelines. Validated instruments with >1 item to assess salivary gland-related symptoms were included. PROMs were evaluated for developmental methodology, structure, validity, and reliability using Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) criteria.Results: A total of 2059 abstracts were retrieved, and 133 full-text articles were reviewed. Sixteen PROMs assessing xerostomia (n = 7), sialadenitis (n = 4), Sjogren's syndrome (n = 2), Parkinson's-associated sialorrhea (n = 2), and oral systemic sclerosis (n = 1) were identified. Most (n = 15) were developed de novo, one was adapted from a pre-existing questionnaire. Eleven PROMs demonstrated "very good" analysis of internal consistency per COSMIN criteria, and 10 included testretest data. Regarding content validity, four PROMs were developed with both patient and physician input, but none were rated as "adequate." All included comparisons against other questionnaires (n = 7), salivary flow rate (n = 9), and/or healthy controls (n = 3). The most rigorously developed PROM, the Xerostomia Inventory, was rated adequate in 6 out of 7 domains.Conclusions: Several PROMs evaluate salivary function. The abilties of these PROMs to meet design and validation standards were variable, with notable limitations in content validity for all tools. New and updated PROMs assessing obstructive and inflammatory salivary symptoms should utilize patient and provider input.

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“…30 However, clinicians should keep in mind that MHISS may be better suited to indicate functional change and/or to examine treatment efficacy, due to it being designed specifically for use with scleroderma patients. 31…”

Section: Discussionmentioning

confidence: 99%

Clinician and patient experiences of managing and living with oral and dental manifestations of scleroderma: A scoping review

Mills,

Price,

Aggarwal

et al. 2023

Journal of Scleroderma and Related Disorders

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Oral and dental manifestations of scleroderma are extremely common, yet they are often overlooked within rheumatology and poorly understood within dentistry. Previous research has indicated the need to understand the oral and dental experiences of people living with scleroderma and those involved in their care. This scoping review aims, for the first time, to comprehensively map what is known regarding the identification and management of oral and dental manifestations of scleroderma, how these are experienced by people living with scleroderma, and to explore key characteristics of barriers and enablers to good oral and dental care in scleroderma. A scoping review was conducted using six databases (Embase, PubMed, PsychINFO, ASSIA, Scopus and SSCI), according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses – extension for Scoping Review. Grey literature was also included. Studies were eligible for inclusion if the full text and abstract were available in English, published between 2002 and 2022, and focused on the concept of oral and dental care in adults with scleroderma, either relating to identification and management, enablers and barriers to best practice, or patient experiences and well-being. Qualitative research which seeks to understand patients’ lived experiences was a notable gap in the literature. Similarly, there was a significant lack of focus on the oral and dental manifestations of scleroderma in rheumatology. Three key features were identified which would facilitate best practice in research and clinical contexts: the necessity of multidisciplinary care; the necessity of centralising patient experience; and the necessity of mitigating barriers to dental care. We conclude that increased awareness of scleroderma within dentistry and streamlining referral procedures between the disciplines of dentistry and rheumatology, to enable the early identification and management of scleroderma, are crucial.

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Validity and reliability of the Mouth Handicap of Systemic Sclerosis questionnaire in a UK population

Cited by 4 publications

References 23 publications

Measuring the impact of systemic sclerosis on oral health‐related quality of life in a UK population

Measuring the impact of systemic sclerosis on oral health‐related quality of life in a UK population

Patient Reported Outcome Measures for Salivary Function: A Systematic Review

Clinician and patient experiences of managing and living with oral and dental manifestations of scleroderma: A scoping review

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