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1.
Health Qual Life Outcomes ; 22(1): 48, 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38978063

RESUMO

PURPOSE: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024. METHODS: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement. RESULTS: From the literature and expert consultation, 49 potentially relevant reporting items were identified. Round 1 of the Delphi study was completed by 103 panelists, whereas round 2 and 3 were completed by 78 panelists. After 3 rounds, agreement (≥ 67%) on inclusion and wording was reached for 44 items. Eleven items without consensus for inclusion and/or wording were discussed at a workgroup meeting attended by 24 participants. Agreement was reached for the inclusion and wording of 10 items, and the deletion of 1 item. Pilot testing with 65 authors of OMI systematic reviews further improved the guideline through minor changes in wording and structure, finalized during the end-of-project meeting. The final checklist to facilitate the reporting of full systematic review reports contains 54 (sub)items addressing the review's title, abstract, plain language summary, open science, introduction, methods, results, and discussion. Thirteen items pertaining to the title and abstract are also included in a separate abstract checklist, guiding authors in reporting for example conference abstracts. CONCLUSION: PRISMA-COSMIN for OMIs 2024 consists of two checklists (full reports; abstracts), their corresponding explanation and elaboration documents detailing the rationale and examples for each item, and a data flow diagram. PRISMA-COSMIN for OMIs 2024 can improve the reporting of systematic reviews of OMIs, fostering their reproducibility and allowing end-users to appraise the quality of OMIs and select the most appropriate OMI for a specific application. NOTE: In order to encourage its wide dissemination this article is freely accessible on the web sites of the journals: Health and Quality of Life Outcomes; Journal of Clinical Epidemiology; Journal of Patient-Reported Outcomes; Quality of Life Research.


Assuntos
Técnica Delphi , Avaliação de Resultados em Cuidados de Saúde , Revisões Sistemáticas como Assunto , Humanos , Guias como Assunto , Lista de Checagem , Projetos de Pesquisa/normas , Consenso
2.
Qual Life Res ; 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38961010

RESUMO

PURPOSE: Systematic reviews evaluating and comparing the measurement properties of outcome measurement instruments (OMIs) play an important role in OMI selection. Earlier overviews of review quality (2007, 2014) evidenced substantial concerns with regards to alignment to scientific standards. This overview aimed to investigate whether the quality of recent systematic reviews of OMIs lives up to the current scientific standards. METHODS: One hundred systematic reviews of OMIs published from June 1, 2021 onwards were randomly selected through a systematic literature search performed on March 17, 2022 in MEDLINE and EMBASE. The quality of systematic reviews was appraised by two independent reviewers. An updated data extraction form was informed by the earlier studies, and results were compared to these earlier studies' findings. RESULTS: A quarter of the reviews had an unclear research question or aim, and in 22% of the reviews the search strategy did not match the aim. Half of the reviews had an incomprehensive search strategy, because relevant search terms were not included. In 63% of the reviews (compared to 41% in 2014 and 30% in 2007) a risk of bias assessment was conducted. In 73% of the reviews (some) measurement properties were evaluated (58% in 2014 and 55% in 2007). In 60% of the reviews the data were (partly) synthesized (42% in 2014 and 7% in 2007); evaluation of measurement properties and data syntheses was not conducted separately for subscales in the majority. Certainty assessments of the quality of the total body of evidence were conducted in only 33% of reviews (not assessed in 2014 and 2007). The majority (58%) did not make any recommendations on which OMI (not) to use. CONCLUSION: Despite clear improvements in risk of bias assessments, measurement property evaluation and data synthesis, specifying the research question, conducting the search strategy and performing a certainty assessment remain poor. To ensure that systematic reviews of OMIs meet current scientific standards, more consistent conduct and reporting of systematic reviews of OMIs is needed.

3.
Qual Life Res ; 33(8): 2029-2046, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38980635

RESUMO

PURPOSE: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024. METHODS: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement. RESULTS: From the literature and expert consultation, 49 potentially relevant reporting items were identified. Round 1 of the Delphi study was completed by 103 panelists, whereas round 2 and 3 were completed by 78 panelists. After 3 rounds, agreement (≥ 67%) on inclusion and wording was reached for 44 items. Eleven items without consensus for inclusion and/or wording were discussed at a workgroup meeting attended by 24 participants. Agreement was reached for the inclusion and wording of 10 items, and the deletion of 1 item. Pilot testing with 65 authors of OMI systematic reviews further improved the guideline through minor changes in wording and structure, finalized during the end-of-project meeting. The final checklist to facilitate the reporting of full systematic review reports contains 54 (sub)items addressing the review's title, abstract, plain language summary, open science, introduction, methods, results, and discussion. Thirteen items pertaining to the title and abstract are also included in a separate abstract checklist, guiding authors in reporting for example conference abstracts. CONCLUSION: PRISMA-COSMIN for OMIs 2024 consists of two checklists (full reports; abstracts), their corresponding explanation and elaboration documents detailing the rationale and examples for each item, and a data flow diagram. PRISMA-COSMIN for OMIs 2024 can improve the reporting of systematic reviews of OMIs, fostering their reproducibility and allowing end-users to appraise the quality of OMIs and select the most appropriate OMI for a specific application. NOTE: In order to encourage its wide dissemination this article is freely accessible on the web sites of the journals: Health and Quality of Life Outcomes; Journal of Clinical Epidemiology; Journal of Patient-Reported Outcomes; Quality of Life Research.


Assuntos
Técnica Delphi , Avaliação de Resultados em Cuidados de Saúde , Revisões Sistemáticas como Assunto , Humanos , Guias como Assunto , Projetos de Pesquisa/normas , Lista de Checagem
4.
J Sleep Res ; 32(2): e13753, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36254358

RESUMO

Psychometric properties of the v1.0 Patient-Reported Outcomes Measurement Information System (PROMIS®) sleep disturbance (27 items) and sleep-related impairment (SRI; 16 items) item banks, short forms derived from the item bank, and simulated computerised adaptive test (CAT), were assessed in a representative sample of 1,006 adults from the Dutch general population. For sleep disturbance all items fitted the item response theory model. Four items showed differential item functioning (i.e., lack of measurement invariance) for age and two for language but the impact on scores (expressed as T-scores) was small. Reliable scores (r > 0.90) were found for 92.2%-96.3% of respondents with the full bank, short forms with six and eight items, and CAT, but for only 25.6% with the four-item short form. For SRI two items did not fit the item response theory model. Four items showed differential item functioning for language but the impact on T-scores was small. Reliable scores were found for 82.1% with the full bank, for 47.8%-69.5% with short forms and CAT. T-scores of 49.7 and 49.3 represent the average score of the Dutch general population for sleep disturbance and SRI, respectively. In conclusion, sufficient structural validity, reliability, and cross-cultural validity was found for the full banks but short forms of four items are not reliable enough for clinical practice. For SRI we recommend the full item bank if this is the primary outcome.


Assuntos
Idioma , Sono , Humanos , Inquéritos e Questionários , Psicometria , Reprodutibilidade dos Testes , Valores de Referência , Medidas de Resultados Relatados pelo Paciente , Sistemas de Informação , Qualidade de Vida
5.
Ophthalmic Physiol Opt ; 43(4): 725-737, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36807604

RESUMO

PURPOSE: To investigate the agreement between an online nurse-assisted eye-screening tool and reference tests in older adults receiving home healthcare and to collect user experiences. METHODS: Older adults (65+) receiving home healthcare were included. Home healthcare nurses assisted in administering the eye-screening tool at participants' homes. Approximately 2 weeks later, a researcher administered reference tests at participants' homes. Experiences from participants and home healthcare nurses were collected. Agreement in outcomes (distance and near visual acuity, with the latter being measured using two different optotypes, and macular problems) between the eye-screening tool and reference clinical testing was compared. A difference of less than ±0.15 logMAR was considered acceptable. RESULTS: A total of 40 participants were included. Here, we describe the results for the right eye; results for the left eye were similar. The mean difference between the eye-screening tool and reference tests for distance visual acuity was 0.02 logMAR. The mean difference between the eye-screening tool and reference tests using two different optotypes for near visual acuity was 0.06 and 0.03 logMAR, respectively. The majority of the individual data points were within the ±0.15 logMAR threshold (75%, 51% and 58%, respectively). The agreement between tests for macular problems was 75%. Participants and home healthcare nurses were generally satisfied with the eye-screening tool, although remarks for further improvements were made. CONCLUSIONS: The eye-screening tool is promising for nurse-assisted eye screening in older adults receiving home healthcare, with the mostly satisfactory agreement. After implementing the eye-screening tool in practice, cost-effectiveness needs to be investigated.


Assuntos
Atenção à Saúde , Humanos , Idoso , Acuidade Visual
6.
Curr Diab Rep ; 22(9): 405-421, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35819705

RESUMO

PURPOSE OF REVIEW: We aimed to systematically evaluate the content validity of patient-reported outcome measures (PROMs) specifically developed to measure (aspects of) health-related quality of life (HRQOL) in people with type 2 diabetes. A systematic review was performed in PubMed and Embase of PROMs measuring perceived symptoms, physical function, mental function, social function/participation, and general health perceptions, and that were validated to at least some extent. Content validity (relevance, comprehensiveness, and comprehensibility) was evaluated using COSMIN methodology. RECENT FINDINGS: We identified 54 (different versions of) PROMs, containing 150 subscales. We found evidence for sufficient content validity for only 41/150 (27%) (subscales of) PROMs. The quality of evidence was generally very low. We found 66 out of 150 (44%) (subscales of) PROMs with evidence for either insufficient relevance, insufficient comprehensiveness, or insufficient comprehensibility. For measuring diabetes-specific symptoms, physical function, mental function, social function/participation, and general health perceptions, we identified one to 11 (subscales of) PROMs with sufficient content validity, although quality of the evidence was generally low. For measuring depressive symptoms, no PROM with sufficient content validity was identified. For each aspect of HRQL, we found at least one PROM with sufficient content validity, except for depressive symptoms. The quality of the evidence was mostly very low.


Assuntos
Diabetes Mellitus Tipo 2 , Qualidade de Vida , Humanos , Medidas de Resultados Relatados pelo Paciente
7.
Qual Life Res ; 31(12): 3447-3458, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35751760

RESUMO

PURPOSE: To investigate the structural validity, internal consistency, measurement invariance, and construct validity of the Dutch PROMIS-29 v2.1 profile, including seven physical (e.g., pain, physical function), mental (e.g., depression, anxiety), and social (e.g., role functioning) domains of health, in a Dutch general population sample including subsamples with and without chronic diseases. METHODS: The PROMIS-29 was completed by 63,602 participants from the Lifelines cohort study. Structural validity of the PROMIS-29, including unidimensionality of each domain and the physical and mental health summary scores, was evaluated using factor analyses (criteria: CFI ≥ 0.95, TLI ≥ 0.95, RMSEA ≤ 0.06, SRMR ≤ 0.08). Internal consistency, measurement invariance (no differential item functioning (DIF) for age, gender, administration mode, educational level, ethnicity, chronic diseases), and construct validity (hypotheses on known-groups validity and correlations between domains) were assessed per domain. RESULTS: The factor structure of the seven domains was supported (CFI = 0.994, TLI = 0.993, RMSEA = 0.046, SRMR = 0.031) as was unidimensionality of each domain, both in the entire sample and the subsamples. Model fit of the physical and mental health summary scores reached the criteria, and scoring coefficients were obtained. Cronbach's alpha for the seven PROMIS-29 domains ranged from 0.75 to 0.96 in the complete sample. No DIF was detected. Of the predefined hypotheses, 78% could be confirmed. CONCLUSION: Sufficient structural validity, internal consistency and measurement invariance were found, both in the entire sample and in subsamples with and without chronic diseases. Requirements for sufficient evidence for construct validity were (almost) met for most subscales. Future studies should investigate test-retest reliability, measurement error, and responsiveness of the PROMIS-29.


Assuntos
Etnicidade , Qualidade de Vida , Humanos , Reprodutibilidade dos Testes , Estudos de Coortes , Qualidade de Vida/psicologia , Doença Crônica , Psicometria , Inquéritos e Questionários
8.
Ophthalmic Physiol Opt ; 41(5): 1007-1020, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34392553

RESUMO

PURPOSE: Strabismus often has an impact on a patient's quality of life (QoL). The Adult Strabismus-20 questionnaire (AS-20) is an instrument developed to assess the strabismus-specific QoL. The aim was to investigate several psychometric properties of the Dutch-AS-20 among adult patients with strabismus. METHODS: Patients with any type of strabismus completed the Dutch-AS-20, the EuroQol five-dimensional questionnaire (EQ-5D-5L) and the Amblyopia and Strabismus Questionnaire (A&SQ) (N = 286). Psychometric properties were evaluated with the use of item response theory (IRT) analysis (graded response model) and by determining the internal consistency, test-retest reliability after two weeks, targeting and measurement precision. Construct validity of the AS-20 was tested against the EQ-5D-5L and the A&SQ. RESULTS: Principal component analysis indicated a psychosocial and function subscale. After collapsing underutilised response options for 10 items, subsequent fit analysis showed that the function subscale benefitted from removal of two items. Differential item functioning (DIF) was detected on four items for age and gender subgroups, but with minimal impact on the total score. Internal consistency (Cronbach's alpha 0.93 psychosocial and 0.87 function subscale) and test-retest reliability (ICC 0.91 psychosocial and 0.88 function subscale) were sufficient. Targeting and measurement precision of both subscales was appropriate for patients with low to moderate levels of visual and psychosocial functioning but suboptimal for patients with high levels of visual and psychosocial functioning. Correlations were between 0.4 and 0.7 for (subscales of) the Dutch-AS-20 and the A&SQ or EQ-5D-5L, confirming expected construct validity. CONCLUSIONS: The 18-item Dutch-AS-20 has sound psychometric properties to assess the strabismus-specific QoL among Dutch adult patients with low to moderate levels of visual and psychosocial functioning. Care must be taken when interpreting the results due to lower measurement precision at the higher end of both subscales. In future longitudinal studies, properties to assess treatment effects should be evaluated.


Assuntos
Qualidade de Vida , Estrabismo , Adulto , Humanos , Psicometria , Reprodutibilidade dos Testes , Estrabismo/diagnóstico , Inquéritos e Questionários
9.
Qual Life Res ; 29(3): 775-781, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31673921

RESUMO

PURPOSE: To identify and monitor the developmental and participation needs of visually impaired (VI) children, the Participation and Activity Inventory for Children and Youth (PAI-CY) has recently been developed involving end-users as stakeholders. The aim was to investigate psychometric properties of the PAI-CY for children between 0 and 2 years. METHODS: Responses from 115 parents were included in item analyses, after which a combination of classical test theory and item response theory (IRT) was used. Internal consistency, known-group validity, and test-retest reliability at item and scale level were investigated. RESULTS: After deleting four items, the PAI-CY met IRT assumptions, i.e., unidimensionality, local independence, and monotonicity, and satisfactory model fit was obtained. Participants with more severe VI and comorbidity scored significantly worse than those with less severe VI and without comorbidity, supporting known-group validity. Satisfactory internal consistency and test-retest reliability were obtained (Cronbach's alpha 0.95, kappa 0.60-0.91, ICC 0.920). CONCLUSIONS: The PAI-CY 0-2 years has acceptable psychometric properties and can be used to systematically assess and monitor developmental and participation needs of very young children with VI from parents' perspectives in low vision practice and research. Confirmation of psychometric properties is necessary, possibly facilitating further item reduction, increased precision, and improved user-friendliness.


Assuntos
Psicometria/métodos , Qualidade de Vida/psicologia , Baixa Visão/psicologia , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pais , Reprodutibilidade dos Testes , Inquéritos e Questionários
10.
BMC Med Res Methodol ; 19(1): 221, 2019 12 03.
Artigo em Inglês | MEDLINE | ID: mdl-31795950

RESUMO

BACKGROUND: To assess cross-cultural validity between Dutch and English versions of the FVQ_CYP, a patient-reported outcome measure developed in the United Kingdom (UK) for children and adolescents with (severe) visual impairment or blindness (VI for brevity) to measure functional vision. METHODS: The 36-item FVQ_CYP was translated and adapted into Dutch using standard guidelines. The questionnaire was administered to Dutch children and adolescents aged 7-17 years (N = 253) with impaired vision (no restrictions regarding acuity). Data were compared to existing UK data of children and adolescents aged 10-15 years (N = 91) with VI (acuity LogMar worse than 0.48). As with the original UK FVQ_CYP validation, a rating scale model (RSM) was applied to the Dutch data. RESULTS: Minor adaptations were needed in translation-rounds. Significant differences in item responses were found between the Dutch and UK data. Item response theory assumptions were met, but fit to the RSM was unsatisfactory. Therefore, psychometric properties of the Dutch FVQ_CYP were analysed irrespective of the original model and criteria used. A graded response model led to the removal of 12 items due to missing data, low information, overlapping content and limited relevance to Dutch children. Fit indices for the remaining 24 items were adequate. CONCLUSIONS: Differences in population characteristics, distribution of responses, non-invariance at the model level and small sample sizes challenged the cross-cultural validation process. However, the Dutch adapted FVQ_CYP showed high measurement precision and broad coverage of items measuring children's functional vision. The underlying reasons for differences between countries in instrument performance are discussed with implications for future studies.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Transtornos da Visão/psicologia , Transtornos da Visão/terapia , Adolescente , Fatores Etários , Criança , Comparação Transcultural , Feminino , Humanos , Idioma , Masculino , Países Baixos , Psicometria , Reprodutibilidade dos Testes , Traduções
12.
Ophthalmic Physiol Opt ; 39(5): 378-391, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31468574

RESUMO

PURPOSE: The Participation and Activity Inventory for Children and Youth 3-6 years (PAI-CY 3-6) was recently developed to assess the participation needs of children with visual impairment (VI) by means of parent-proxy report. This study reports on its psychometric properties. METHODS: Parents of children aged 3-6 years registered at two low vision rehabilitation centers in the Netherlands were invited to participate and completed the 52-item PAI-CY. Satisfaction with the PAI-CY 3-6 was determined using an evaluation form. Basic item analyses was conducted, after which an item response theory (IRT) model (i.e. the graded response model, GRM) was fitted. Deletion of items was informed by results of item analyses, fulfillment of IRT assumptions, differential item functioning, fit to the GRM and item information content. Face and content validity were considered; professionals from low vision rehabilitation centers were asked for their opinion in the item deletion process. After obtaining a satisfactory set of items, known-group validity, concurrent validity and test-retest reliability were also investigated. RESULTS: Data of 237 parents were included in the analyses. Various aspects of the PAI-CY 3-6 were perceived as neutral to positive by over 85% of the respondents. After removing 17 items, the remaining 35 items reflected satisfactory fit to the GRM. Known-group validity was supported, since participants with more severe VI and comorbidity scored significantly worse than those with less severe VI and without comorbidity after correcting for potential confounders. Test-retest reliability was adequate, and the PAI-CY showed to have good concurrent validity. Feedback from professionals motivated the maintenance of 3 of the 17 deleted items, although not included in the scoring. Furthermore, two new items were added, resulting in a 40-item instrument. CONCLUSIONS: The PAI-CY 3-6 has sound psychometric properties and can now be used to assess the participation needs of children aged 3-6 years with VI by means of proxy. Implementation in routine low vision rehabilitation care enables further optimization and investigation of its acceptability and feasibility.


Assuntos
Técnicas de Diagnóstico Oftalmológico/normas , Psicometria/instrumentação , Transtornos da Visão/diagnóstico , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Satisfação do Paciente , Reprodutibilidade dos Testes
13.
Ophthalmic Physiol Opt ; 39(6): 399-413, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31696537

RESUMO

PURPOSE: The aim was to compare fatigue levels between patients with visual impairment and controls with normal sight and to examine the association between fatigue and vision loss severity. METHODS: A systematic literature search was performed using databases of PubMed, Embase, PsycINFO and Cochrane to identify observational studies with outcomes related to fatigue (e.g. vitality subscale of the Short-Form 36, Fatigue Assessment Scale). A meta-analysis was performed using standardised mean differences (SMDs) and odds ratios (OR) to quantitatively summarise the association between visual impairment and fatigue. Sources of heterogeneity were explored by subgroup and sensitivity analyses. Study quality was assessed with the Newcastle-Ottawa scale. RESULTS: After reviewing 4477 studies, 22 studies with a total of 40 004 participants were included, of which 18 contributed to meta-analysis. Among these, eight were assessed as moderate quality studies and 10 as high quality studies. Pooled analysis involving 2500 patients and 8395 controls showed higher fatigue severity levels (S.M.D. = -0.36, 95% CI -0.50 to -0.22, 14 studies) among visually impaired patients compared to normally sighted controls. This effect size was small and persisted in sensitivity analyses that involved study quality, fatigue assessment tools and visual acuity data. Furthermore, pooled analysis of four studies including 2615 patients and 5438 controls showed a significant association between visual impairment and fatigue (OR = 2.61, 95% CI 1.69 to 4.04). Secondary meta-analysis of four studies showed no significant difference in fatigue severity (S.M.D. = 0.01, 95% CI -0.37 to 0.39) between patients with moderate visual impairment and patients with severe visual impairment or blindness. CONCLUSIONS: Current moderate to high quality evidence suggest that patients with visual impairment experience more severe fatigue symptoms than persons with normal sight. However, a limited number of available studies indicates that fatigue is not associated with severity of vision loss. Future studies are required to determine which factors and underlying mechanisms may explain the association between visual impairment and fatigue. Discussing fatigue at an early stage and developing intervention options for vision-related fatigue should be considered within the field of low vision rehabilitation.


Assuntos
Fadiga/complicações , Estudos Observacionais como Assunto/métodos , Transtornos da Visão/etiologia , Acuidade Visual , Saúde Global , Humanos , Incidência , Transtornos da Visão/epidemiologia
14.
Health Qual Life Outcomes ; 15(1): 98, 2017 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-28490332

RESUMO

BACKGROUND: Having a visual impairment affects quality of life, daily functioning and participation. To assess rehabilitation needs of visually impaired children and young adults, the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) were developed. The PAI-CY comprises four questionnaires for different age categories: 0-2 years, 3-6 years, 7-12 years and 13-17 years. This pilot study assesses the feasibility and acceptability of the PAI-CY and PAI-YA, and the relevance of the content of the questionnaires. METHODS: In addition to the regular admission procedure, the PAI-CY and PAI-YA were completed by 30 participants (six per questionnaire). For the PAI-CY, parents completed the questionnaire online prior to admission. From age 7 years onwards, children completed the questionnaire face-to-face with a rehabilitation professional during the admission procedure. Young adults completed the PAI-YA online. Subsequently, participants and professionals administered an evaluation form. RESULTS: Overall, 85% of the parents rated all aspects of the PAI-CY neutral to positive, whereas 100% of all children and young adults were neutral to positive on all aspects, except for the duration to complete. The main criticism of professionals was that they were unable to identify actual rehabilitation needs using the questionnaires. Minor adjustments were recommended for the content of questions. CONCLUSIONS: Parents, children and young adults were mostly satisfied with the questionnaires, however, professionals suggested some changes. The adaptations made should improve satisfaction with content, clarification of questions, and satisfaction with the questionnaires in compiling a rehabilitation plan. Although face and content validity has been optimized, a larger field study is taking place to further develop and evaluate the questionnaires.


Assuntos
Avaliação do Impacto na Saúde/métodos , Qualidade de Vida , Inquéritos e Questionários , Transtornos da Visão/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pais , Projetos Piloto , Adulto Jovem
16.
Qual Life Res ; 25(10): 2633-2643, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27076189

RESUMO

PURPOSE: To develop a comprehensive, conceptual model detailing the aspects of a child's life (<18 years) that are affected by low vision. METHODS: Three stakeholders were involved in the developmental process of the conceptual model: children and adolescents with a visual impairment (n = 40), parents of children with a visual impairment (n = 25) and professionals of multidisciplinary rehabilitation centres and specialised schools (n = 25). Qualitative methods including focus groups, online and face-to-face brainstorming sessions and concept mapping were used to investigate the impact of visual impairment on the lives of children and adolescents and to create the conceptual model. To aid interpretation of the large age range, four age-bands were formed. RESULTS: For each age-band (0-2, 3-6, 7-12 and 13-17 years), a total of 153, 200, 297 and 306 statements were generated by all stakeholders, respectively. The conceptual models show that low vision affects the sensorial development as well as the physical, psychological and social well-being of children and adolescents. In addition, identified external factors (i.e. education/employment and parental influence) can either facilitate or hinder participation. CONCLUSIONS: The developed model shows which life aspects of children are affected by low vision. The needs identified by children and adolescents correspond not entirely to the perspective of parents and low vision professionals. Future research should focus on developing and validating a new questionnaire based on the conceptual model. This will aid goal setting, rehabilitation referral and the accomplishment of developmental milestones and life transitions of children and adolescents with a visual impairment, ultimately improving their participation and quality of life.


Assuntos
Perfil de Impacto da Doença , Baixa Visão/reabilitação , Adolescente , Criança , Feminino , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Masculino , Pesquisa Qualitativa , Inquéritos e Questionários
17.
BMC Public Health ; 14: 1108, 2014 Oct 27.
Artigo em Inglês | MEDLINE | ID: mdl-25346512

RESUMO

BACKGROUND: Although lifestyle interventions have shown to be effective in reducing the risk for type 2 diabetes mellitus, maintenance of achieved results is difficult, as participants often experience relapse after the intervention has ended. This paper describes the systematic development of a maintenance programme for the extensive SLIMMER intervention, an existing diabetes prevention intervention for high-risk individuals, implemented in a real-life setting in the Netherlands. METHODS: The maintenance programme was developed using the Intervention Mapping protocol. Programme development was informed by a literature study supplemented by various focus group discussions and feedback from implementers of the extensive SLIMMER intervention. RESULTS: The maintenance programme was designed to sustain a healthy diet and physical activity pattern by targeting knowledge, attitudes, subjective norms and perceived behavioural control of the SLIMMER participants. Practical applications were clustered into nine programme components, including sports clinics at local sports clubs, a concluding meeting with the physiotherapist and dietician, and a return session with the physiotherapist, dietician and physical activity group. Manuals were developed for the implementers and included a detailed time table and step-by-step instructions on how to implement the maintenance programme. CONCLUSIONS: The Intervention Mapping protocol provided a useful framework to systematically plan a maintenance programme for the extensive SLIMMER intervention. The study showed that planning a maintenance programme can build on existing implementation structures of the extensive programme. Future research is needed to determine to what extent the maintenance programme contributes to sustained effects in participants of lifestyle interventions.


Assuntos
Diabetes Mellitus Tipo 2/prevenção & controle , Estilo de Vida , Comportamento de Redução do Risco , Grupos Focais , Humanos , Países Baixos , Desenvolvimento de Programas
18.
Res Involv Engagem ; 10(1): 33, 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38515153

RESUMO

BACKGROUND: In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects have not yet been established. We recently developed an extension of PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), to be used for systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) for OMIs 2024. Patients and public members formed a small but impactful stakeholder group. We critically evaluated the PPI component in this project and developed recommendations for conducting PPI when developing reporting guidelines. MAIN TEXT: A patient partner was an integral research team member at the project development and grant application stage. Once the project started, five patient and public contributors (PPCs) were recruited to participate in the Delphi study; three PPCs contributed to subsequent steps. We collected quantitative feedback through surveys; qualitative feedback was garnered through a focus group discussion after the Delphi study and through debrief meetings after subsequent project activities. Feedback was thematically combined with reflections from the research team, and was predominantly positive. The following themes emerged: importance of PPI partnership, number of PPCs involved, onboarding, design of Delphi surveys, flexibility in the process, complexity of PPI in methodological research, and power imbalances. Impacts of PPI on the content and presentation of the reporting guideline were evident, and reciprocal learning between PPCs and the research team occurred throughout the project. Lessons learned were translated into 17 recommendations for future projects. CONCLUSION: Integrating PPI in the development of PRISMA-COSMIN for OMIs 2024 was feasible and considered valuable by PPCs and the research team. Our approach can be applied by others wishing to integrate PPI in developing reporting guidelines.

19.
Transl Vis Sci Technol ; 13(7): 18, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-39052253

RESUMO

Purpose: To compare objective physical activity (PA) levels of children with visual impairment (VI) and children with normal sight. Methods: One hundred children with VI and 100 age- and gender-matched normal-sighted peers 7 to 17 years of age wore an ActiGraph for 1 week. Activity count per minute (cpm) was modeled using a series of generalized linear mixed-effects models including vision, age, sex, time of day, and vision by time of day interaction. PA outcomes included mean counts per minute and proportion of time spent on sedentary, light, moderate, and vigorous intensity PA. Results: Data of 83 children with VI and 77 normal-sighted peers were included. Mean counts per minute were lower in children with VI (P < 0.001), especially during and after school. Children with VI were less sedentary (55%; 95% confidence interval [CI], 53-57) than children with normal sight before school (62%; 95% CI, 60-64) and over weekends: children with VI, 41% (95% CI, 39-43); children with normal sight, 45% (95% CI, 43-47). Yet, children with VI were more sedentary during school (36%; 95% CI, 34-37) compared with children with normal sight (30%; 95% CI, 29-32). They also spent more time performing light PA and less time performing moderate PA at school and vigorous PA across all periods of day (P < 0.001). Conclusions: Children with VI participated in light and moderate PA but did not perform as much vigorous PA as children with normal sight, especially during school hours. Translational Relevance: There is a need to promote more intense PA programs in schools tailored for children with VI.


Assuntos
Exercício Físico , Transtornos da Visão , Humanos , Criança , Feminino , Masculino , Exercício Físico/fisiologia , Adolescente , Transtornos da Visão/fisiopatologia , Transtornos da Visão/epidemiologia , Comportamento Sedentário , Pessoas com Deficiência Visual , Actigrafia
20.
Artigo em Inglês | MEDLINE | ID: mdl-39151790

RESUMO

OBJECTIVE: To systematically evaluate the measurement properties of 12 patient-reported outcome measures (PROMs) used to measure depression symptom severity in adolescents with depression. Depression symptom severity was chosen as the outcome of focus given its importance as an outcome to measure in adolescents with depression across clinical trials and/or care. METHOD: MEDLINE, PsycInfo, Scopus, CINAHL, and Web of Science were searched from year of inception up to December 7th, 2023. Study appraisal (i.e., risk of bias), evaluation of measurement properties, and evidence synthesis followed the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines. Included studies evaluated at least one of nine measurement properties as detailed in the COSMIN taxonomy within a reported sample or subgroup of youth 12-24 years, with at least 40% meeting criteria for any depressive disorder. RESULTS: Of the 15,560 records identified, 31 studies for seven PROMs were included in the COSMIN appraisal. Although several PROMs have the potential to accurately measure depression symptom severity in adolescents with depression, at this time none of the PROMs can be recommended for use without further evaluative work. High-quality evidence was generally lacking, largely due to few or inconsistent findings, small sample sizes, and other methodological concerns. CONCLUSION: This systematic review of the measurement properties of 12 PROMs used to measure depression symptom severity in adolescents with depression found that none of the PROMs can be recommended for use until further evaluative work is conducted. Clinicians and researchers should proceed with caution when using these PROMs.

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