scholarly journals Adaptation and Validation of a Spanish version of the Treatment Burden Questionnaire in Patients with Multiple Sclerosis

2019 ◽  
Author(s):  
Maria Celica Ysrraelit ◽  
Marcela Paula Fiol ◽  
Fernando Vazquez Peña ◽  
Sandra Vanotti ◽  
Sergio Adrián Terrasa ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Medication Adherence ◽  
Pharmacological Treatment ◽  
Health Resources ◽  
Therapeutic Interventions ◽  
Dimensional Structure ◽  
Inverse Association ◽  
Treatment Burden ◽  
Structured Interviews ◽  
Self Monitoring

Abstract Background: The 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). Methods: The 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. Results: The 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). Conclusions: The 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.

scholarly journals Adaptation and Validation of a Spanish version of the Treatment Burden Questionnaire in Patients with Multiple Sclerosis

2019 ◽  
Author(s):  
Maria Celica Ysrraelit ◽  
Marcela Paula Fiol ◽  
Fernando Vazquez Peña ◽  
Sandra Vanotti ◽  
Sergio Adrián Terrasa ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Medication Adherence ◽  
Pharmacological Treatment ◽  
Health Resources ◽  
Therapeutic Interventions ◽  
Dimensional Structure ◽  
Inverse Association ◽  
Treatment Burden ◽  
Structured Interviews ◽  
Self Monitoring

Abstract Background: The 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). Methods: The 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. Results: The 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). Conclusions: The 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.

scholarly journals Adaptation and Validation of a Spanish version of the Treatment Burden Questionnaire in Patients with Multiple Sclerosis

2019 ◽  
Author(s):  
Maria Celica Ysrraelit ◽  
Marcela Paula Fiol ◽  
Fernando Vazquez Peña ◽  
Sandra Vanotti ◽  
Sergio Adrián Terrasa ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Medication Adherence ◽  
Pharmacological Treatment ◽  
Health Resources ◽  
Therapeutic Interventions ◽  
Dimensional Structure ◽  
Inverse Association ◽  
Treatment Burden ◽  
Structured Interviews ◽  
Self Monitoring

Abstract Background: The 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). Methods: The 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. Results: The 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). Conclusions: The 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.

PENERAPAN TEKNIK SELF MANAGEMENT TERHADAP KEPATUHAN BEROBAT PENDERITA HIV DI YOGYAKARTA

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Yuliati Hasanah
Keyword(s):  
Medication Adherence ◽  
Behavioral Approach ◽  
Self Management ◽  
Single Subject ◽  
Single Subject Design ◽  
Self Monitoring ◽  
Self Evaluation ◽  
Subject Design ◽  
Management Techniques ◽  
The Subject

Abstract Self management is a strategy in which the cognitive behavioral approach in the application, subject to the expected full attendance during the intervention process. NAP is an HIV patient and had undergone antiretroviral therapy. Saturation, fatigue experienced by NAP during the ARV therapy, so found some times subject medical leave provisions. Healthy behavior in a sick person (in this case a person suffering from HIV) one of which is adherent to treatment that must be endured. This research aims to gain result the applying of self management techniques against medication adherence of NAP patient with HIV in the Balai Rehabilitasi Sosial Pamardi PutraYogyakarta. This study focuses on the application of self-management techniques that include self-monitoring, self reinforcement and self evaluation of medication adherence that includes aspects of belief, accept and act on the subject. Researchers used quantitative approach by using the method of single subject design N = 1 model A-B-A now where the measurements and observations made in each phase. The subject in this study as many as one person with initials NAP. The purpose of this study is to look at the effect of applying the self management technique against NAP’s medication adherence. The results of this study indicate that the application of self-management techniques have a positive effect in improving NAP’s medication adherence with skor of 2SD smaller than skor of the mean phase difference A2 and A1. Stages through the application of this technique is extracting and determining value, set goals, formulate an action plan, the implementation of self-monitoring, self reinforcement and self evaluation. Based on the analysis of the results of the study concluded that the motivation, participation and discipline will determine the effectiveness of the intervention. Support of family members is also important to support the commitment of the subjects in this therapy.Keywords: behavior modification, HIV, medication adherence, self-management AbstrakManusia dapat memutuskan dan menentukan dirinya sendiri. Berdasarkan asumsi tersebut teknik self management merupakan salah satu teknik modifikasi perilaku yang memfokuskan pada regulasi diri. Self management merupakan salah satu strategi dalam pendekatan perilaku kognitif dimana dalam penerapannya, subjek diharapkan kehadiran penuh selama proses intervensi. NAP adalah seorang penderita HIV dan telah menjalani terapi ARV. Kejenuhan, kelelahan dialami NAP selama mengikuti terapi ARV, sehingga ditemukan beberapa kali subjek meninggalkan ketentuan-ketentuan medis. Perilaku sehat pada orang sakit (dalam kasus ini seseorang yang menderita HIV) salah satunya adalah patuh terhadap pengobatan yang harus dijalani. Penelitian ini bertujuan untuk memperoleh hasil dari penerapan teknik self management terhadap kepatuhan berobat subjek NAP sebagai penderita HIV di Balai Rehabilitasi Sosial Pamardi Putra Yogyakarta. Penelitian ini menitikberatkan pada penerapan teknik self management yang mencakup self monitoring, self reinforcement dan self evaluation terhadap kepatuhan berobat yang mencakup aspek mempercayai (belief), menerima (accept) dan tindakan (act) pada subjek. Peneliti menggunakan pendekatan kuantitatif dengan menggunakan metode single subject design N=1 dengan model A-B-A dinama pengukuran dan pengamatan dilakukan di setiap fase. Subjek dalam penelitian ini sebanyak satu orang dengan inisial NAP. Tujuan penelitian ini adalah untuk melihat pengaruh penerapan teknik self management terhadap kepatuhan berobat subjek NAP. Hasil penelitian ini menunjukkan bahwa penerapan teknik self management mempunyai pengaruh positif dalam meningkatkan kepatuhan berobat subjek NAP dengan nilai 2SD lebih kecil dari selisih mean fase A2 dan A1. Tahapan yang dilalui dalam penerapan teknik ini adalah penggalian dan penentuan value, menetapkan goals, merumuskan rencana tindakan, pelaksanaan self monitoring, self reinforcement dan self evaluation. Berdasarkan analisa hasil penelitian disimpulkan bahwa motivasi, peran serta dan kedisiplinan akan menentukan efektifitas intervensi. Dukungan anggota keluarga juga penting untuk mendukung komitmen subjek dalam terapi ini.Kata kunci:  HIV, kepatuhan berobat, modifikasi perilaku, self management

Patients’ Perspective on the Psychological Impact of Multiple Sclerosis on Their Life

2021 ◽  
pp. 105413732110068
Author(s):  
Chrysoula Baka ◽  
Kalliopi Chatira ◽  
Evangelos C. Karademas ◽  
Konstantinos G. Kafetsios
Keyword(s):  
Multiple Sclerosis ◽  
Grounded Theory ◽  
Psychological Impact ◽  
Autoimmune Disorder ◽  
Positive Outcomes ◽  
Structured Interviews ◽  
Psychosocial Wellbeing ◽  
Positive Meaning ◽  
Patients Perspective ◽  
The Way

Multiple sclerosis is a chronic autoimmune disorder that greatly impacts on patients’ physical and psychosocial wellbeing. The purpose of this study is to investigate the experiences of people diagnosed with multiple sclerosis in Greece (N = 30), with regard to the way they coped with the diagnosis and the symptoms, the psychological implications of the disorder and the meaning they attributed to it. Data were collected through semi-structured interviews and they were analyzed using grounded theory. The findings showed that despite the negative implications of the disorder and the difficulty in managing the diagnosis and the symptoms, half of the patients attributed positive meaning to the disorder. Taking care of oneself, re-evaluation of life and a sense of liberation were described as the positive outcomes of experiencing multiple sclerosis.

scholarly journals Young children’s language-based agency in multilingual contexts in Luxembourg and Israel

2020 ◽  
Vol 0 (0) ◽  
Author(s):  
Mila Schwartz ◽  
Claudine Kirsch ◽  
Simone Mortini
Keyword(s):  
Learning Environment ◽  
Case Studies ◽  
Research Methods ◽  
Language Policies ◽  
Educational Settings ◽  
Structured Interviews ◽  
Self Monitoring ◽  
Teachers And Parents ◽  
Linguistic Backgrounds ◽  
Longitudinal Case Studies

AbstractDrawing on two longitudinal case-studies, this study aimed to identify some salient characteristics of the agentic behaviour of two young emergent multilinguals in two different multilingual contexts: Luxembourg and Israel. Despite the fact that the studies were conducted independently, the two cases were analysed together owing to the similarities in the research methods such as video-recorded observations, and semi-structured interviews with teachers and parents. The data were analysed through thematic and conversational analyses. Findings showed that a boy who learned Luxembourgish in Luxembourg and a girl who learned Hebrew in Israel, were outgoing and active learners who influenced their learning environment. We identified 10 types of agentic behaviour, including engaging in repetition after peers and the teacher, creatively producing language, translanguaging, and self-monitoring. Despite differences of the children’s sociocultural and linguistic backgrounds, and the language policies of their educational settings, we found a striking overlap in their language-based agentic behaviours. We suggest that the identified types can encourage further research in this field. Although our study with talkative children allowed us to observe many types of agentic behaviours, we cannot claim that less outgoing children or children who do not show the same behaviours do not have ways of expressing their agency.

Validity and reliability of the Mandarin version of the Treatment Burden Questionnaire among stroke patients in Mainland China

2021 ◽  
Author(s):  
Qi Zhang ◽  
Ke Zhang ◽  
Miao Li ◽  
Jiaxin Gu ◽  
Xintong Li ◽  
...  
Keyword(s):  
Internal Consistency ◽  
Convergent Validity ◽  
Intraclass Correlation ◽  
Reliability And Validity ◽  
Therapeutic Interventions ◽  
Treatment Burden ◽  
Validity And Reliability ◽  
Stroke Patients ◽  
Retest Reliability ◽  
Test Retest Reliability

Abstract Objectives To examine the validity and reliability of the Mandarin version of the Treatment Burden Questionnaire (TBQ) among stroke patients. Background Stroke patients need long-term management of symptoms and life situation, and treatment burden has recently emerged as a new concept that can influence the health outcomes during the rehabilitation process. Methods The convenience sampling method was used to recruit 187 cases of stroke patients in a tertiary grade hospital in Tianjin for a formal investigation. Item analysis, reliability and validity tests were carried out. The reliability test included internal consistency and test–retest reliability. And as well as content, structure and convergent validity were performed for the validity test. Results Of the 187 completed questionnaires, only 180 (96.3%) were suitable for analysis. According to the experts’ evaluation, the I-CVI of each item was from 0.833 to 1.000, and the S-CVI was 0.967. The exploratory factor analysis yielded three-factor components with a cumulative variation of 53.054%. Convergent validity was demonstrated using measures of Morisky’s Medication Adherence Scale 8 (r = –0.450, P < 0.01). All correlations between items and global scores ranged from 0.403 to 0.638. Internal consistency reliability and test–retest reliability were found to be acceptable, as indicated by a Cronbach’s α of 0.824 and an intraclass correlation coefficient of 0.846, respectively. Conclusions The Mandarin TBQ had acceptable validity and reliability. The use of TBQ in the assessment of treatment burden of stroke survivor may benefit health resources allocation and provide tailor therapeutic interventions to construct minimally disruptive care.

scholarly journals Views of the Future of Partners of People with Multiple Sclerosis Who Attended a Lifestyle Modification Workshop: A Qualitative Analysis of Perspectives and Experiences

2020 ◽  
Vol 18 (1) ◽  
pp. 85
Author(s):  
Sandra L. Neate ◽  
Keryn L. Taylor ◽  
Nupur Nag ◽  
George A. Jelinek ◽  
Steve Simpson-Yap ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Health Outcomes ◽  
Lifestyle Modification ◽  
Structured Interviews ◽  
Interpretive Phenomenology ◽  
Related Risk ◽  
The Future ◽  
Partner Perceptions ◽  
And Control ◽  
The Impact

People with multiple sclerosis (PwMS) often experience uncertainty and fear about their futures. Partners of PwMS may share their concerns and experience fears about their own futures, limitations on their lives, ability to work, and becoming a carer. For PwMS, modification of lifestyle-related risk factors has been associated with improved health outcomes. For PwMS who attended residential lifestyle modification workshops (RLMW), sustained improved health outcomes have been demonstrated. Whether improved outcomes for PwMS who engage with lifestyle modification translate to improved partner perceptions of the future, is yet to be explored. We explored the perspectives of partners of PwMS who had attended a RLMW and the impact that the person with MS’s illness and their engagement with lifestyle modification had on their partners’ views of the future. Analysis of 21 semi-structured interviews used a methodology informed by Heidegger’s Interpretive Phenomenology. Three themes emerged: ‘uncertainty’, ‘planning for the future’ and ‘control, empowerment and confidence’. Subthemes included MS and lifestyle modification being a catalyst for positive change; developing a sense of control and empowerment; and hope, optimism and positivity. Lifestyle modification may provide benefits, not only to PwMS, but also to their partners, and should be considered part of mainstream management of MS.

scholarly journals Acceptability and feasibility of a mobile health application for blood pressure monitoring in rural Uganda

JAMIA Open ◽  
2021 ◽  
Author(s):  
Beatrice Mugabirwe ◽  
Tabor Flickinger ◽  
Lauren Cox ◽  
Pius Ariho ◽  
Rebecca Dillingham ◽  
...  
Keyword(s):  
Social Support ◽  
Blood Pressure ◽  
Medication Adherence ◽  
Blood Pressure Control ◽  
Pressure Control ◽  
Mobile App ◽  
People Living With Hiv ◽  
Resource Limited Settings ◽  
Self Monitoring ◽  
Resource Limited

Abstract Background Mobile technologies to improve blood pressure control in resource-limited settings are needed. We adapted and evaluated the acceptability and feasibility of PositiveLinks, a mobile phone application for self-monitoring, social support, and engagement in care for people living with HIV, among patients with hypertension in rural Uganda. Methods We enrolled adults on treatment for hypertension at Mbarara Regional Referral Hospital and Mbarara Municipal health center IV, southwestern Uganda. We provided and educated all participants on the use of PositiveLinks application and automated blood pressure monitors. We administered a baseline questionnaire and performed in-depth interviews 30 days later to explore acceptability, feasibility, medication adherence, social support, and blood pressure control. Results A total of 37 participants completed the interviews, mean age of 58 years (SD 10.8) and 28 (75.7%) were female. All participants embraced the PositiveLinks mobile app and were enthusiastic about self-monitoring of blood pressure, 35 (94.6%) experienced peer to peer support. Among the 35 participants non-adherent to medications at baseline, 31 had improved medication adherence. All except 1 of the 31(83.8%) who had uncontrolled blood pressure at baseline, had self-reported controlled blood pressure after 30 days of use of PositiveLinks. Conclusion Patients with hypertension in rural Uganda embraced the PositiveLinks mobile application and had improved medication adherence, social support, and blood pressure control. Further assessment of cost-effectiveness of the application in blood pressure control in resource-limited settings will be pursued in future studies.

Exploring Older Adults’ Internalizations And Misconceptions Regarding Antihypertensive Medication Management

2021 ◽  
Vol 10 (1) ◽  
pp. 304-308
Author(s):  
Kenneth A. Blocker ◽  
Wendy A. Rogers
Keyword(s):  
Older Adults ◽  
Medication Adherence ◽  
Antihypertensive Medication ◽  
Medication Management ◽  
Illness Representation ◽  
Effective Management ◽  
Structured Interviews ◽  
Antihypertensive Medications ◽  
Hypertension Knowledge ◽  
Management Behaviors

Hypertension, or high blood pressure, is an asymptomatic cardiovascular condition common with increasing age that must be controlled with proper management behaviors, such as adherence to prescribed antihypertensive medications. Unfortunately, older adults may struggle with consistent and effective management of this medication specifically and the disease generally, which can lead to poorer health outcomes. The goal of the study was to investigate older adults’ antihypertensive medication management using the Illness Representation Model as a lens to identify potential misconceptions that may contribute to medication management. We conducted semi-structured interviews with 40 older adults regarding management routines, hypertension knowledge, perceived nonadherence contributors, and perspectives related to their illness. We identified numerous misconceptions regarding hypertension knowledge, disease severity, as well as perceived adherence performance that may contribute to challenges older adults face with maintaining antihypertensive medication adherence. Moreover, these findings inform the need for and design of effective educational tools for improving antihypertensive medication adherence.

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