Dataset Information

Development and validation of the disease - specific problems questionnaire for patients with multiple sclerosis.

ABSTRACT:

Background

Patients with multiple sclerosis face numerous problems during their lifetime. A self-report measurement of disease - specific problems is required to be developed for patients with multiple sclerosis based on different cultural factors. Accordingly, this can advance our understanding on the disease-specific problems for care planning as well as improving coping ways and quality of life. This study aimed to develop and validate the scale of disease-specific problems of Multiple Sclerosis.

Methods

This was an exploratory sequential mixed method study conducted in three phases. Correspondingly, in the first phase, the concept of disease-specific problems was defined using the content analysis approach in patients with MS. In the second phase, the item pool was generated from the findings of the first phase, and in the third phase, psychometric properties of the scale, including face, content, and construct validity and reliability, were evaluated.

Results

After examining both validity and reliability, 28 items were developed in the final questionnaire. As well, by performing the factor analysis, five factors were revealed as follows: physical problems, psychological problems, emotional problems, family problems, and socio-economic problems. Internal consistency and stability of the questionnaire were calculated as 0.82 and 0.90, respectively, indicating an excellent reliability.

Conclusion

The 28-item questionnaire is valid and reliable for measurement of level of disease - specific problems in Iranian people with MS.

SUBMITTER: Dehghani A

PROVIDER: S-EPMC8555153 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Development and validation of the disease - specific problems questionnaire for patients with multiple sclerosis.

Dehghani Ali A

BMC neurology 20211027 1

<h4>Background</h4>Patients with multiple sclerosis face numerous problems during their lifetime. A self-report measurement of disease - specific problems is required to be developed for patients with multiple sclerosis based on different cultural factors. Accordingly, this can advance our understanding on the disease-specific problems for care planning as well as improving coping ways and quality of life. This study aimed to develop and validate the scale of disease-specific problems of Multipl ...[more]

PMID: 34706649

Similar Datasets

Project description:BackgroundPatients making important medical decisions need to evaluate complex information in the light of their own beliefs, attitudes and priorities. The process can be considered in terms of the theory of planned behaviour. Decision support technologies aim at helping patients making informed treatment choices. Instruments assessing informed choices need to include risk knowledge, attitude (towards therapy) and actual uptake. However, mechanisms by which decision support achieves its goals are poorly understood.Our aim was therefore to develop and validate an instrument modeling the process of multiple sclerosis (MS) patients' decision making about whether to undergo disease modifying (immuno-)therapies (DMT).MethodsWe constructed a 30-item patient administered questionnaire to access the elaboration of decisions about DMT in MS according to the theory of planned behaviour. MS-patients' belief composites regarding immunotherapy were classified according to the domains "attitude", "subjective social norm" and "control beliefs" and within each domain to either "expectations" or "values" yielding 6 sub-domains. A randomized controlled trial (n?=?192) evaluating an evidence based educational intervention tested the instrument's predictive power regarding intention to use immunotherapy and its sensitivity to the intervention.ResultsThe psychometric properties of the questionnaire were satisfactory (mean item difficulty 62, mean SD 0.9, range 0-3). Responses explain up to 68% of the variability in the intention to use DMT was explained by up to 68% in the total sample. Four weeks after an educational intervention, predictive power was higher in the intervention (IG) compared to the control group (CG) (intention estimate: CG 56% / IG 69%, p?=?.179; three domains CG 56% / IG 74%, p?=?.047; six sub-domains CG 64% / IG 78%, p?=?.073). The IG held more critical beliefs towards immunotherapy (p?=?.002) and were less willing to comply with social norm (p?=?.012).ConclusionsThe questionnaire seems to provide a valid way of explaining patients' inherent decision processes and to be sensitive towards varying levels of elaboration. Similar tools based on the theory of planned behaviour could be applied to other decision making scenarios.

Project description:BackgroundThe Treatment Burden Questionnaire (TBQ) is a self-reported measure of the effect of treatment workload on patient wellbeing. We sought to validate the TBQ in Spanish and use it to estimate the burden of treatment in Argentinian patients with multiple sclerosis (MS).MethodsThe TBQ was forward-backward translated into Spanish. Two focus groups and 25 semi-structured interviews focused on wording and possible item exclusion. Validation was performed in 2 steps. First, 162 patients across a range of MS severity completed the questionnaire. Confirmatory factor analysis assessed the dimensional structure of the TBQ. Construct validity was assessed by studying correlations with fatigue and quality of life (QoL). Then, in a second cohort of 171 patients, we evaluated the association between TBQ scores and patients' sex, age, education level, employment status, type of MS, disease duration, comorbidities, EDSS, pharmacological treatment and medication adherence.ResultsThe questionnaire presented a 3-factor structure in which burden was related to pharmacological treatment; comprehensive health assistance; and psycho-social-economic context. Composite reliability was > 0.8 for all factors. TBQ showed positive correlation with fatigue (rs = 0.467, p = 0.006), negative correlation with QoL (rs - 0.446, p = 0.009). For the second cohort, total TBQ score was 43 (SD 29). Lowest scores were observed on self-monitoring (0.53, SD 1.3) and highest for administrative load (4.2, SD 3.4). Inverse association was found between the TBQ score and medication adherence (r 0.243 p = 0.001). TBQ scores also correlated with daily patient pill/injection requirements (r 0.175 p = 0.020). Individuals receiving injectable treatment scored higher than patients on oral drugs (total TBQ 51 (SD 32) vs 39 (SD 27) p = 0.002).ConclusionsThe TBQ in Spanish is a reliable instrument and showed adequate correlation with QoL and adherence scales in MS patients. TBQ may benefit health resources allocation and provide tailor therapeutic interventions to construct a minimally disruptive care.

Project description:UnlabelledTreatment of polycystic liver disease (PLD) focuses on symptom improvement. Generic questionnaires lack sensitivity to capture PLD-related symptoms, a prerequisite to determine effectiveness of therapy. We developed and validated a disease-specific questionnaire that assesses symptoms in PLD (PLD-Q). We identified 16 PLD-related symptoms (total score 0-100 points) by literature review and interviews with patients and clinicians. The developed PLD-Q was validated in Dutch (n = 200) and United States (US; n = 203) PLD patients. We assessed the correlation of PLD-Q total score with European Organization for Research and Treatment of Cancer (EORTC) symptom scale, global health visual analogue scale (VAS) of EQ-5D, and liver volume. To test discriminative validity, we compared PLD-Q total scores of patients with different PLD severity stages (Gigot classification) and PLD-Q total scores of PLD patients with general controls and polycystic kidney disease patients without PLD. Reproducibility was tested by comparing original test scores with 2-week retest scores. In total, 167 Dutch and 124 US patients returned the questionnaire. Correlation between PLD-Q total score and EORTC symptom scale (The Netherlands [NL], r = 0.788; US, r = 0.811) and global health VAS (NL, r = -0.517; US, r = -0.593) was good. There was no correlation of PLD-Q total score with liver volume (NL, r = 0.138; P = 0.236; US, r = 0.254; P = 0.052). Gigot type III individuals scored numerically higher than type II patients (NL, 46 vs. 40; P = 0.089; US, 48 vs. 36; P = 0.055). PLD patients scored higher on the PLD-Q total score than general controls (NL, 42 vs. 17; US, 40 vs. 13 points) and polycystic kidney disease patients without PLD (22 points). Reproducibility of PLD-Q was excellent (NL, r = 0.94; US, 0.96).ConclusionPLD-Q is a valid, reproducible, and sensitive disease-specific questionnaire that can be used to assess PLD-related symptoms in clinical care and future research. (Hepatology 2016;64:151-160).

Dataset Information

Development and validation of the disease - specific problems questionnaire for patients with multiple sclerosis.

Background

Methods

Results

Conclusion

Publications

Development and validation of the disease - specific problems questionnaire for patients with multiple sclerosis.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets