The impact of the socioeconomic factor on Parkinson's disease medication adherence: a scoping review.

BACKGROUND: Therapeutic adherence is a decisive issue on chronic disease management in patients requiring long-term pharmacotherapy, such as Parkinson's disease (PD). Although it is well known that socioeconomic factor is a barrier to medication adherence in many chronic diseases, its impacts on PD still need to be investigated. OBJECTIVE: Explore what and how socioeconomic factors impact medication adherence in people with PD. METHODS: We carried out a scoping review across three databases to identify studies exploring what and how socioeconomic factors impact medication adherence in people with PD considering eight attributes: 1. educational level, 2. disease-related knowledge, 3. income, 4. cost of medication, 5. drug subsidy (meaning presence of subsidies in the cost of medication), 6. employability, and 7. ethnicity (black, indigenous, immigrants). RESULTS: Of the 399 identified studies (Embase = 294, Medline = 88, LILACS = 17), eight met inclusion criteria. We identified factors covering the eight attributes of socioeconomic impact, and all of them negatively impacted the medication adherence of people with PD. The most prevalent factor in the studies was low patient educational level (four studies), followed by costs of medications (three studies), income (three studies), and disease-related knowledge (three studies). Distinctly from most of the studies selected, one of them evidenced suboptimal adherence in individuals receiving the medication free of charge, and another one could not find correlation between suboptimal adherence and educational level. CONCLUSION: Socioeconomic factors negatively impact medication adherence in PD patients. This review provides basis for developing patient and population-based interventions to improve adherence to treatment in PD.

ANTECEDENTES: A adesão à medicação é um componente crucial no manejo correto da doença de Parkinson (DP) e, embora esteja bem estabelecido que o fator socioeconômico é uma barreira à adesão medicamentosa em muitas doenças crônicas, seus impactos na DP ainda precisam ser investigados. OBJETIVO: Explorar quais são e como os fatores socioeconômicos afetam a adesão à medicação em pessoas com DP. MéTODOS: Realizamos uma revisão de escopo em três bases de dados para identificar estudos que explorassem quais e como os fatores socioeconômicos impactam na adesão à medicação em pessoas com DP, considerando oito atributos: 1. nível educacional, 2. conhecimento relacionado à doença, 3. renda, 4. custo de medicamentos, 5. subsídio de medicamentos (ou seja, presença de subsídios no custo dos medicamentos), 6. empregabilidade e 7. etnia (negra, indígena, imigrantes). RESULTADOS: Dos 399 estudos identificados (Embase = 294, Medline = 88, LILACS = 17), oito preencheram os critérios de inclusão. Identificamos fatores que abrangem os oito atributos de impacto socioeconômico e todos impactaram negativamente na adesão medicamentosa de pessoas com DP. Foram mais prevalentes o baixo nível educacional do paciente (quatro estudos), custos dos medicamentos, nível de renda e conhecimento relacionado à doença (três estudos cada). Diferentemente da maioria dos estudos selecionados, um deles evidenciou adesão subótima em indivíduos que receberam a medicação gratuitamente, e outro não encontrou correlação entre adesão subótima e nível educacional. CONCLUSãO: Fatores socioeconômicos impactam negativamente a adesão ao tratamento medicamentoso em pessoas com DP. Esta revisão fornece base para o desenvolvimento de intervenções baseadas em pacientes e populações no intuito de melhorar a adesão ao tratamento farmacológico de pessoas com DP.

Patient With Parkinson Disease and Care Partner Perceptions of Key Domains Affecting Health-Related Quality of Life: Systematic Review

BACKGROUND AND OBJECTIVES: To effectively customize Parkinson disease (PD) programs, it is important to incorporate the "individual's voice" and have a thorough understanding of the symptom priorities of people with PD (PwP) and care partners (CP). In this convergent integrated mixed-method systematic review, we aimed to analyze qualitative and quantitative evidence of PD motor and nonmotor symptoms affecting health-related quality of life (HRQOL) in PwP and CP, comparing priorities across different levels of disease severity. METHODS: We searched MEDLINE, PsycINFO, Web of Science, Embase, and Scopus; ProQuest Dissertations and Theses Global; and the Michael J. Fox Foundation Data Resources for studies published up to June 29, 2022. We included qualitative, quantitative, and mixed-method studies investigating PD symptom priorities among PwP and CP. We critically appraised eligible studies for methodological quality using the Mixed-Methods Appraisal Tool. Derived terms were mapped and coded according to thematic attribution. Independent syntheses of qualitative and quantitative evidence and transformation of quantitative data into qualitative formats were performed. RESULTS: Of the 7,716 identified studies, we included 70 that provided qualitative (n = 13), quantitative (n = 53), and mixed (n = 4) evidence. We included 604 mapped terms representing 11 PwP-identified and CP-identified motor and nonmotor symptom categories. Across all PD stages, both PwP and CP considered 5 domains more affecting their HRQOL, namely: "motor functionality," "mood," "cognition," "gait, balance, posture, and falls," and "nighttime sleep disorders." In early disease, PwP and CP considered "mood" the domain that most affected their HRQOL. In advanced PD, PwP considered "pain" the domain that most affects their HRQOL, while CP considered "psychiatric symptoms." The domain "gait, balance, posture, and falls" was equally considered by both PwP and CP as the second domain that most affects their HRQOL in the advanced stage of PD. DISCUSSION: The ranking of the priority of symptoms is largely shared by PwP and CP, and motor symptom priorities dominate the full disease spectrum. However, the nonmotor symptom priorities shift according to the disease severity stage. Tailored care and research require that providers consider these shifting priorities and incorporate the "individual's voice" into treatment decisions.

Unveiling Assessment Gaps in Parkinson's Disease Psychosis: A Scoping Review.

BACKGROUND: Parkinson's disease psychosis (PDP) is a multidimensional construct that is challenging to measure. Accurate assessment of PDP requires comprehensive and reliable clinical outcome assessment (COA) measures. OBJECTIVE: To identify PDP measurement gaps in available COAs currently used in clinical and research settings. METHODS: We conducted a scoping review using Preferred Reporting Items for Systematic Review and Meta-Analysis Extension for Scoping Reviews (PRISMA-ScR) guidelines. We implemented a three-step search strategy in international databases with keywords related to Parkinson's disease (PD), psychosis, and COA. We analyzed studies using COA to assess PDP, classifying their items according to domains and subdomains. RESULTS: From 5673 identified studies, we included 628 containing 432 PDP core items from 32 COAs. Among the 32 COAs, 19 were PD-specific, containing 266 items, constructed as clinician-reported outcomes (ClinRO) (148 items), patient-reported outcomes (PRO) (112 items), and observer-reported outcomes (ObsRO) (six items). Across all PD-specific COAs, regardless of structure, 89.4% of the items from 27 COAs focused primarily on assessing PDP symptoms' severity, and only 9.7% of items probed the impact of PDP on a person's daily functioning. CONCLUSIONS: Symptom-based domains are currently prioritized for measuring the severity of PDP, with limited coverage of the functional impact of PDP on patients' lives. Whereas the International Parkinson and Movement Disorder Society has traditionally developed a "Unified" COA that culls items from prior COAs to form a new one, a new COA will largely need newly developed items if the functional impact of PDP is prioritized. © 2024 International Parkinson and Movement Disorder Society.

The impact of the socioeconomic factor on Parkinson's disease medication adherence: a scoping review / O impacto do fator socioeconômico na adesão à medicação na doença de Parkinson: uma revisão de escopo

Abstract Background Therapeutic adherence is a decisive issue on chronic disease management in patients requiring long-term pharmacotherapy, such as Parkinson's disease (PD). Although it is well known that socioeconomic factor is a barrier to medication adherence in many chronic diseases, its impacts on PD still need to be investigated. Objective Explore what and how socioeconomic factors impact medication adherence in people with PD. Methods We carried out a scoping review across three databases to identify studies exploring what and how socioeconomic factors impact medication adherence in people with PD considering eight attributes: 1. educational level, 2. disease-related knowledge, 3. income, 4. cost of medication, 5. drug subsidy (meaning presence of subsidies in the cost of medication), 6. employability, and 7. ethnicity (black, indigenous, immigrants). Results Of the 399 identified studies (Embase = 294, Medline = 88, LILACS = 17), eight met inclusion criteria. We identified factors covering the eight attributes of socioeconomic impact, and all of them negatively impacted the medication adherence of people with PD. The most prevalent factor in the studies was low patient educational level (four studies), followed by costs of medications (three studies), income (three studies), and disease-related knowledge (three studies). Distinctly from most of the studies selected, one of them evidenced suboptimal adherence in individuals receiving the medication free of charge, and another one could not find correlation between suboptimal adherence and educational level. Conclusion Socioeconomic factors negatively impact medication adherence in PD patients. This review provides basis for developing patient and population-based interventions to improve adherence to treatment in PD.

Resumo Antecedentes A adesão à medicação é um componente crucial no manejo correto da doença de Parkinson (DP) e, embora esteja bem estabelecido que o fator socioeconômico é uma barreira à adesão medicamentosa em muitas doenças crônicas, seus impactos na DP ainda precisam ser investigados. Objetivo Explorar quais são e como os fatores socioeconômicos afetam a adesão à medicação em pessoas com DP. Métodos Realizamos uma revisão de escopo em três bases de dados para identificar estudos que explorassem quais e como os fatores socioeconômicos impactam na adesão à medicação em pessoas com DP, considerando oito atributos: 1. nível educacional, 2. conhecimento relacionado à doença, 3. renda, 4. custo de medicamentos, 5. subsídio de medicamentos (ou seja, presença de subsídios no custo dos medicamentos), 6. empregabilidade e 7. etnia (negra, indígena, imigrantes). Resultados Dos 399 estudos identificados (Embase = 294, Medline = 88, LILACS = 17), oito preencheram os critérios de inclusão. Identificamos fatores que abrangem os oito atributos de impacto socioeconômico e todos impactaram negativamente na adesão medicamentosa de pessoas com DP. Foram mais prevalentes o baixo nível educacional do paciente (quatro estudos), custos dos medicamentos, nível de renda e conhecimento relacionado à doença (três estudos cada). Diferentemente da maioria dos estudos selecionados, um deles evidenciou adesão subótima em indivíduos que receberam a medicação gratuitamente, e outro não encontrou correlação entre adesão subótima e nível educacional. Conclusão Fatores socioeconômicos impactam negativamente a adesão ao tratamento medicamentoso em pessoas com DP. Esta revisão fornece base para o desenvolvimento de intervenções baseadas em pacientes e populações no intuito de melhorar a adesão ao tratamento farmacológico de pessoas com DP.

Learning to PERSEVERE: A pilot study of peer mentor support and caregiver education in Lewy body dementia.

BACKGROUND: Lewy Body Disease (LBD) is the second most common neurodegenerative disorder. Despite high family caregiver strain and adverse patient and caregiver outcomes, few interventions exist for LBD family caregivers. Based on a successful peer mentoring pilot study in advanced Parkinson's Disease, we revised the curriculum of this peer-led educational intervention incorporating LBD caregiver input. OBJECTIVE: We assessed feasibility of a peer mentor-led educational intervention and its impact on LBD family caregivers' knowledge, dementia attitudes, and mastery. METHODS: Using community-based participatory research, we refined a 16-week peer mentoring intervention and recruited caregivers online through national foundations. Experienced LBD caregiver mentors were trained and matched with newer caregiver mentees with whom they spoke weekly for 16 weeks, supported by the intervention curriculum. We measured intervention fidelity biweekly, program satisfaction, and change in LBD knowledge, dementia attitudes, and caregiving mastery before and after the 16-week intervention. RESULTS: Thirty mentor-mentee pairs completed a median of 15 calls (range: 8-19; 424 total calls; median 45 min each). As satisfaction indicators, participants rated 95.3% of calls as useful, and at week 16, all participants indicated they would recommend the intervention to other caregivers. Mentees' knowledge and dementia attitudes improved by 13% (p < 0.05) and 7% (p < 0.001), respectively. Training improved mentors' LBD knowledge by 32% (p < 0.0001) and dementia attitudes by 2.5% (p < 0.001). Neither mentor nor mentee mastery changed significantly (p = 0.36, respectively). CONCLUSIONS: This LBD caregiver-designed and -led intervention was feasible, well-received, and effective in improving knowledge and dementia attitudes in both seasoned and newer caregivers. TRIAL REGISTRATION: https://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov Identifier: NCT04649164; December 2, 2020.

Rating Scales for Medication Adherence in Parkinson's Disease: A Systematic Review for Critique and Recommendations.

Background: Behaviors interfering with medication adherence (MA) are common and often complex in Parkinson's disease (PD), negatively affecting quality of life and undermining the value of clinical trials. The Clinical Outcome Assessments (COA) Scientific Evaluation Committee of the International Parkinson and Movement Disorder Society (MDS) commissioned the assessment of MA rating scales to recommend the use in PD. Objective: Critically review the measurement properties of rating scales used to assess MA in PD and to issue recommendations. Methods: We conducted systematic review across seven databases to identify structured scales to assess MA in PD. Eligible studies were critically appraised for methodological quality using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) Risk of Bias checklist. Standards for good measurement properties of the selected scales were summarized narratively using the COSMIN, the MDS-COA Committee methodology, the World Health Organization concepts, and the Ascertaining Barriers to Compliance taxonomy. The certainty of the evidence was determined using the modified Grades of Recommendation, Assessment, Development and Evaluation approach with final assessments (highest to lowest) of "Recommended," "Suggested" and "Listed". Results: Of the nine reviewed scales, none met the designation "Recommended". The Morisky Medication Adherence Scale (MMAS-8); Beliefs Related to Medications Adherence questionnaire, Beliefs about Medication Questionnaire, Medication Adherence Rating Scale, and Satisfaction with Information on Medicines Scale were rated "Suggested". Conclusions: We suggest further work focusing on resolving the problems of the suggested scales or developing a new scale meeting all required criteria.

Translation and cross-cultural adaptation of the ABC taxonomy for medication adherence into Portuguese - Updating patients into people.

BACKGROUND: The Ascertaining Barriers to Compliance (ABC) taxonomy for describing medication adherence was created in 2012, aiming to standardize terms and definitions in research and practice. The taxonomy comprises seven terms and definitions. Originally developed in English, subsequently translated into French and German, is currently being translated to Portuguese, Spanish, Czech, Romanian and Italian, aiming to promote its global use and overcome cultural barriers. OBJECTIVES: To cross-culturally translate the ABC taxonomy into Portuguese for Portugal and Brazil. METHODS: A systematic literature search was conducted to identify published taxonomy terms and definitions in Portuguese, and to identify panelists in medication adherence. Initial mapping of terms and definitions retrieved was scrutinized by the research team to build an e-survey. The e-survey was piloted and then sent to panelists in both countries seeking consensus using a three-round Delphi method. Consensus was defined as ≥ 85% for round 1 and ≥ 75% for round 2. Terms with agreement <10% were dropped between rounds. In round 3, terms and definitions reaching agreement between 50 and 75% were classified as moderate consensus,>75-95% as consensus and >95% as strong consensus. RESULTS: A total of 778 studies were identified and 84 included, enabling the extraction of 154 terms and 32 definitions. In round 1, 164 panelists participated, 115 in round 2 and 99 in the round 3. Consensus was achieved in both countries for all seven terms and definitions, although with varying intensity of agreement. The term "Management of adherence" and the definition of "Discontinuation" obtained moderate consensus in both countries. CONCLUSIONS: A unified and unique ABC taxonomy in Portuguese was possible to develop for use in Portugal and in Brazil. Its use will harmonize and standardize the terms and definitions used in clinical practice and research.

The Multidimensionality of Low Health Literacy in Older Adults: A Scoping Review of International Studies.

This scoping review aims to map the dimensions encompassing the low health literacy (HL) of older adults, describing their respective causes and consequences. A three-step search strategy was conducted using 16 databases from nine portals and reference lists. Of the 4,259 identified studies, 2,845 were screened and 29 (1%) were included. Studies were published between 1999 and 2021, most of them in English (86.2%), from the American continent (48.3%) and with observational design (86.2%). Four dimensions encompassing the low HL of older adults were mapped: (1) patient dimension, (2) healthcare system dimension, (3) social/economic dimension, and (4) health condition dimension. This review highlights specific dimensions encompassing the low literacy in older adults with evidence about its causes and consequences. These results can guide future research and evidence-based practice involving HL of older adults.

DETERMINANTE SOCIAL EM SAÚDE E ÚLCERA DO PÉ DIABÉTICO: PROTOCOLO DE REVISÃO DE ESCOPO / SOCIAL DETERMINANT IN HEALTH AND DIABETIC FOOT ULCER: SCOPE REVIEW PROTOCOL / DETERMINANTE SOCIAL EN SALUD Y ÚLCERA DE PIE DIABÉTICO: PROTOCOLO DE REVISIÓN DEL ALCANCE

Objetivo: apresentar a sistematização de um protocolo de scoping review para mapear e descrever os determinantes sociais da saúde, propostos pela Organização Mundial da Saúde, presentes em adultos com úlcera do pé diabético. Método: Será utilizada uma estratégia de busca em três etapas. As bases de dados utilizadas são LILACS (Portal BVS), IBECS (Portal BVS), BDENF (Portal BVS), ColecionaSUS (Portal BVS). MEDLINE (PUBMED), Pubmed Central (PMC). Embase (Elsevier), Scopus (Elsevier), Web of Science (Clarivate Analytics), CINAHL (EBSCO). As fontes de estudos não publicados e literatura cinzenta a serem pesquisadas incluem o portal de literatura cinzenta Scielo (Science.gov) e o banco de dados colaborativo e multilíngue Epistemonikos (Epistemonikos). Portal de Periódicos Capes nas bases de dados: Embase (Elsevier), Scopus (Elsevier), Web of Science (Clarivate Analytics), Cumulative Index to Nursing and Allied Health Literature ­ Cinahl, Academic Search Premier - ASP, Academic Source, Open Dissertations e SocINDEX com Texto Completo (EBSCO). Portal da revista Scientific Electronic Library Online (Scielo), Science. As listas de referência de estudos elegíveis serão pesquisadas. O portal de periódicos Scielo (Science.gov) e o banco de dados colaborativo e multilíngue Epistemonikos serão pesquisados por literatura inédita. Será extraído os dados de acordo com as características do estudo e da publicação e classificará os determinantes de acordo com os conceitos da Organização Mundial da Saúde

Objective: to present the systematization of a scoping review protocol to map and describe the social determinants of health, proposed by the World Health Organization, present in adults with diabetic foot ulcers. Method: A three-step search strategy will be used. The databases used are LILACS (VHL Portal), IBECS (VHL Portal), BDENF (VHL Portal), ColecionaSUS (VHL Portal). MEDLINE (PUBMED), Pubmed Central (PMC). Embase (Elsevier), Scopus (Elsevier), Web of Science (Clarivate Analytics), CINAHL (EBSCO). Sources of unpublished studies and gray literature to be searched include the gray literature portal Scielo (Science.gov) and the multilingual collaborative database Epistemonikos (Epistemonikos). Portal de Periódicos Capes in the databases: Embase (Elsevier), Scopus (Elsevier), Web of Science (Clarivate Analytics), Cumulative Index to Nursing and Allied Health Literature ­Cinahl, Academic Search Premier -ASP, Academic Source, Open Dissertations and SocINDEX with Full Text (EBSCO). Portal of Scientific Electronic Library Online (Scielo), Science. Reference lists of eligible studies will be searched. The journal portal Scielo (Science.gov) and the collaborative multilingual database Epistemonikos will be searched for unpublished literature. Data will be extracted according to the characteristics of the study and publication and the determinants will be classified according to the concepts of the World Health Organizationt

Objetivo: presentar la sistematización de un protocolo de revisión de alcance para mapear y describir los determinantes sociales de la salud, propuesto por la Organización Mundial de la Salud, presentes en adultos con úlceras del pie diabético. Las bases de datos utilizadas son LILACS (Portal BVS), IBECS (Portal BVS), BDENF (Portal BVS), ColecionaSUS (Portal BVS). MEDLINE (PUBMED), Pubmed Central (PMC). Embase (Elsevier), Scopus (Elsevier), Web of Science (Clarivate Analytics), CINAHL (EBSCO). Las fuentes de estudios no publicados y literatura gris que se buscarán incluyen el portal de literatura gris Scielo (Science.gov) y la base de datos colaborativa multilingüe Epistemonikos (Epistemonikos). Portal de Periódicos Capes en las bases de datos: Embase (Elsevier), Scopus (Elsevier), Web of Science (Clarivate Analytics), Cumulative Index to Nursing and Allied Health Literature ­Cinahl, Academic Search Premier -ASP, Academic Source, Open Dissertations y SocINDEX con texto completo (EBSCO). Portal de Biblioteca Científica Electrónica en Línea (Scielo), Ciencia. Se buscarán las listas de referencias de los estudios elegibles. Se buscará literatura no publicada en el portal de revistas Scielo (Science.gov) y en la base de datos multilingüe colaborativa Epistemonikos. Los datos se extraerán según las características del estudio y publicación y los determinantes se clasificarán según los conceptos de la Organización Mundial de la Salud

The plight of loneliness in Parkinson's disease: New opportunities.

The human phenomenon of loneliness has been increasing in prominence across societies, with precipitous increase since COVID-19, and individuals with Parkinson's disease are not unscathed. Loneliness is of clinical relevance as it is cross-sectionally related to, and longitudinally precedes, mortality and other health risks, including worse motor, cognitive, and behavioral-psychological functioning. Relatively few studies have evaluated loneliness, or associated social experiences, in the context of Parkinson's, but the existing data is provocative. The authors advocate for clinicians' awareness and researchers' investigational focus.

Fragile X-associated tremor ataxia syndrome rating scale: Revision and content validity using a mixed method approach.

Background: The original Fragile X-associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS) contained 61 items, some requiring modifications to better meet recommendations for patient-focused rating scale development. Purpose: Provide initial validation of a revised version of the FXTAS-RS for motor signs. Method: We conducted a two-phase mixed-method approach. In Phase 1, revision, we implemented a Delphi technique identifying pertinent domains/subdomains and developing items through expert consensus. In Phase 2, content validation, we conducted cognitive pretesting assessing comprehensibility, comprehensiveness, and relevance of items to FXTAS motor signs. Results: After five rounds of Delphi panel and two rounds of cognitive pretesting, the revised version of the FXTAS-RS was established with 18 items covering five domains and 13 subdomains of motor signs. Cognitive pretesting revealed adequate content validity for the assessment of FXTAS motor signs. Conclusion: The revised FXTAS-RS has been successfully validated for content and it is now ready for large-scale field validation.

Brazilian practice guidelines for stroke rehabilitation: Part II.

The Brazilian Practice Guidelines for Stroke Rehabilitation - Part II, developed by the Scientific Department of Neurological Rehabilitation of the Brazilian Academy of Neurology (Academia Brasileira de Neurologia, in Portuguese), focuses on specific rehabilitation techniques to aid recovery from impairment and disability after stroke. As in Part I, Part II is also based on recently available evidence from randomized controlled trials, systematic reviews, meta-analyses, and other guidelines. Part II covers disorders of communication, dysphagia, postural control and balance, ataxias, spasticity, upper limb rehabilitation, gait, cognition, unilateral spatial neglect, sensory impairments, home rehabilitation, medication adherence, palliative care, cerebrovascular events related to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, the future of stroke rehabilitation, and stroke websites to support patients and caregivers. Our goal is to provide health professionals with more recent knowledge and recommendations for better rehabilitation care after stroke.

As Diretrizes Brasileiras de Reabilitação do Acidente Vascular Cerebral (AVC) - Parte II, desenvolvida pelo Departamento Científico de Reabilitação Neurológica da Academia Brasileira de Neurologia é voltada para intervenções específicas de técnicas de reabilitação de déficits neurológicos e incapacidades. Seguindo o mesmo modelo da Parte I, a Parte II também se baseia em estudos randomizados, revisões sistemáticas, metanálises e outras diretrizes sobre o mesmo tema. A segunda parte aborda os distúrbios da comunicação, disfagia, controle postural e equilíbrio, ataxias, espasticidade, reabilitação do membro superior, marcha, cognição, negligência espacial unilateral, déficits sensoriais, reabilitação domiciliar, aderência ao uso de medicamentos, cuidados paliativos, o futuro da reabilitação no AVC, e websites de orientação sobre AVC para pacientes e cuidadores. Nosso objetivo é fornecer aos profissionais envolvidos na reabilitação conhecimento atualizado e recomendações para um melhor cuidado no pós-AVC.

Implementation of an innovative model of community nursing for older adults based on Buurtzorg principles: a scoping review protocol.

OBJECTIVE: The objective of this review is to map the international evidence on the implementation of the Buurtzorg model of community nursing practice for the care of older adults. We will describe where and how it has been used, and the challenges and facilitators of implementing this model of care. INTRODUCTION: The challenges of aging have mobilized health systems around the world to replace the current facility- and disease-centered care model with integrated patient-centered care models. The Buurtzorg model provides autonomy to nurses, who, in turn, empower patients in need-based and self-reliant care. INCLUSION CRITERIA: We will consider both published and unpublished studies and reports exploring the process of implementing the Buurtzorg community nursing model for the care of older adults (65 years and older) internationally, in all settings. Concepts of interest will include where the model has been used, how the model has been implemented, and what challenges and facilitators were reported. METHODS: We will implement a three-step search strategy to locate both published and unpublished primary studies, theses, dissertations, book chapters, and text and opinion reports using the following databases: MEDLINE, LILACS, Cochrane CENTRAL, CINAHL, Web of Science, Google Scholar, Embase, Scopus, ProQuest Dissertations and Theses Global, and the official Buurtzorg website. We will present the search strategy in a PRISMA flow diagram. Data will be extracted using Excel spreadsheets and then analyzed narratively. Extracted data will be quantitatively pooled in tables using descriptive statistics to synthesize the characteristics of the reports and sample, followed by a qualitative summary of how the Buurtzorg model has been used, and the challenges and facilitators of implementing this care model.

Brazilian Academy of Neurology practice guidelines for stroke rehabilitation: part I.

The Guidelines for Stroke Rehabilitation are the result of a joint effort by the Scientific Department of Neurological Rehabilitation of the Brazilian Academy of Neurology aiming to guide professionals involved in the rehabilitation process to reduce functional disability and increase individual autonomy. Members of the group participated in web discussion forums with predefined themes, followed by videoconference meetings in which issues were discussed, leading to a consensus. These guidelines, divided into two parts, focus on the implications of recent clinical trials, systematic reviews, and meta-analyses in stroke rehabilitation literature. The main objective was to guide physicians, physiotherapists, speech therapists, occupational therapists, nurses, nutritionists, and other professionals involved in post-stroke care. Recommendations and levels of evidence were adapted according to the currently available literature. Part I discusses topics on rehabilitation in the acute phase, as well as prevention and management of frequent conditions and comorbidities after stroke.

Brazilian practice guidelines for stroke rehabilitation: part II / Diretrizes brasileiras para reabilitação no acidente vascular cerebral: parte II

Abstract The Brazilian Practice Guidelines for Stroke Rehabilitation - Part II, developed by the Scientific Department of Neurological Rehabilitation of the Brazilian Academy of Neurology (Academia Brasileira de Neurologia, in Portuguese), focuses on specific rehabilitation techniques to aid recovery from impairment and disability after stroke. As in Part I, Part II is also based on recently available evidence from randomized controlled trials, systematic reviews, meta-analyses, and other guidelines. Part II covers disorders of communication, dysphagia, postural control and balance, ataxias, spasticity, upper limb rehabilitation, gait, cognition, unilateral spatial neglect, sensory impairments, home rehabilitation, medication adherence, palliative care, cerebrovascular events related to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, the future of stroke rehabilitation, and stroke websites to support patients and caregivers. Our goal is to provide health professionals with more recent knowledge and recommendations for better rehabilitation care after stroke.

Resumo As Diretrizes Brasileiras de Reabilitação do Acidente Vascular Cerebral (AVC) - Parte II, desenvolvida pelo Departamento Científico de Reabilitação Neurológica da Academia Brasileira de Neurologia é voltada para intervenções específicas de técnicas de reabilitação de déficits neurológicos e incapacidades. Seguindo o mesmo modelo da Parte I, a Parte II também se baseia em estudos randomizados, revisões sistemáticas, metanálises e outras diretrizes sobre o mesmo tema. A segunda parte aborda os distúrbios da comunicação, disfagia, controle postural e equilíbrio, ataxias, espasticidade, reabilitação do membro superior, marcha, cognição, negligência espacial unilateral, déficits sensoriais, reabilitação domiciliar, aderênciaao usode medicamentos, cuidados paliativos,ofuturodareabilitação no AVC, e websites de orientação sobre AVC para pacientes e cuidadores. Nosso objetivo é fornecer aos profissionais envolvidos na reabilitação conhecimento atualizado e recomendações para um melhor cuidado no pós-AVC.

Parkinson's Disease Medication Adherence Scale: Conceptualization, Scale Development, and Clinimetric Testing Plan.

Background: Medication adherence is a crucial component in the management of patients with chronic diseases needing a long-term pharmacotherapy. Parkinson's disease (PD) is a chronic, degenerative disease with complex drug treatment that poses challenging barriers to patient adherence. The adoption of best practices of scale development can contribute to generate solid concepts and, in the long run, a more stable knowledge base on the underlying constructs of medication adherence in PD measured by the items of the first scale to be created for this purpose. Purpose: To present the development process and clinimetric testing plan of the Parkinson's Disease Medication Adherence Scale (PD-MAS). Method: We adopted a hybrid approach plan based on the United States Food and Drug Administration and Benson and Clark Guide that will create a patient-reported outcome instrument. We presented an overview of consecutive and interrelated steps, containing a concise description of each one. International research centers from Brazil and United States were initially involved in the planning and implementation of the methodological steps of this study. Results: We developed a four-phase multimethod approach for the conceptualization and the clinimetric testing plan of the PD-MAS. First, we describe the development process of the conceptual framework of the PD-MAS underpinning the scale construct; second, we formalized the development process of the first version of the PD-MAS from the generation of item pools to the content validation and pre-testing; third, we established the steps for the first pilot testing and revision; fourth, we describe the steps plan for the first pilot testing and revision, to finally describe its clinimetric testing plan and validation. Conclusion: The overview presentation of the development phases and the clinimetric testing plan of the PD-MAS demonstrate the feasibility of creating an instrument to measure the multidimensional and multifactorial components of the medication adherence process in people with PD.

Brazilian Academy of Neurology practice guidelines for stroke rehabilitation: part I / Diretrizes da Academia Brasileira de Neurologia para reabilitação do acidente vascular cerebral: parte I

ABSTRACT The Guidelines for Stroke Rehabilitation are the result of a joint effort by the Scientific Department of Neurological Rehabilitation of the Brazilian Academy of Neurology aiming to guide professionals involved in the rehabilitation process to reduce functional disability and increase individual autonomy. Members of the group participated in web discussion forums with predefined themes, followed by videoconference meetings in which issues were discussed, leading to a consensus. These guidelines, divided into two parts, focus on the implications of recent clinical trials, systematic reviews, and meta-analyses in stroke rehabilitation literature. The main objective was to guide physicians, physiotherapists, speech therapists, occupational therapists, nurses, nutritionists, and other professionals involved in post-stroke care. Recommendations and levels of evidence were adapted according to the currently available literature. Part I discusses topics on rehabilitation in the acute phase, as well as prevention and management of frequent conditions and comorbidities after stroke.

RESUMO As Diretrizes Brasileiras para Reabilitação do AVC são fruto de um esforço conjunto do Departamento Científico de Reabilitação Neurológica da Academia Brasileira de Neurologia com o objetivo de orientar os profissionais envolvidos no processo de reabilitação para a redução da incapacidade funcional e aumento da autonomia dos indivíduos. Membros do grupo acima participaram de fóruns de discussão na web com pré-temas, seguidos de reuniões por videoconferência em que as controvérsias foram discutidas, levando a um consenso. Essas diretrizes, divididas em duas partes, focam as implicações de recentes ensaios clínicos, revisões sistemáticas e metanálises sobre reabilitação do AVC. O objetivo principal é servir de orientação a médicos, fisioterapeutas, fonoaudiólogos, terapeutas ocupacionais, enfermeiros, nutricionistas e demais profissionais envolvidos no cuidado pós-AVC. As recomendações e níveis de evidência foram adaptados de acordo com a literatura disponível atualmente. Aqui é apresentada a Parte I sobre tópicos de reabilitação na fase aguda, prevenção e tratamento de doenças e comorbidades frequentes após o AVC.

Tracking Emergence of New Motor and Non-Motor Symptoms Using the MDS-UPDRS: A Novel Outcome Measure for Early Parkinson's Disease?

BACKGROUND: Summary scores of current clinical rating scales do not appear sensitive enough to quantify changes in disease progression in early Parkinson's disease (PD) clinical trials. An alternate approach might be to track the appearance of new or emergent symptoms (ES) over time as a measure of disease progression. OBJECTIVE: Explore the potential utility of patient reported ES as an outcome measure during the early phase of PD. METHODS: We analyzed data from the MDS-UPDRS Parts IB (non-motor) and II (motor) Experiences of Daily Living scales over two years in the STEADY-PD3 study. We assessed the number of ES reported in each part of the scale in both participants who started symptomatic treatment and those who did not (STx-yes/no) in two periods: between 0 and 12-months (Year 1), and 13 and 24-months (Year 2). RESULTS: Of 331 participants, 87% developed ES, and 55% started STx in Year 1. The median number of Part IB ES did not significantly differ between STx groups, but ES in Part II were significantly more frequent in the STx-yes group. Of 148 participants who remained STx-no into Year 2, 77% developed ES, and 42% started STx. Again, Part II, but not Part IB ES were more frequent the STx-yes group. Using these results, a sample size of ∼90 per group would be required to detect a 30% reduction in combined Part IB and II ES over 12 months. CONCLUSION: Assessing ES of patient-reported experiences of daily living may provide a useful marker for tracking PD progression.

Rating scales for medication adherence in people living with Parkinson's disease: a systematic review protocol.

OBJECTIVE: The objective of the review is to evaluate the measurement properties of rating scales that have been used to assess the components of medication adherence in patients with Parkinson's disease. INTRODUCTION: Drug therapy is a central strategy in the control of Parkinson's disease symptoms. Measuring behaviors related to medication adherence in patients with Parkinson's disease is vital to understanding the therapeutic response. Consequently, it is necessary to define which instrument offers the most reliable and valid screening. INCLUSION CRITERIA: This review will consider studies in English and Portuguese using structured rating scales to assess medication adherence in people with Parkinson's disease. Studies including data from patients with different diseases in addition to Parkinson's disease will be included only if data are clearly available for each disorder covered. Study protocols, letters to the editors, reviews, and studies with clinical judgment scales but no operationally defined anchor points will be excluded. METHODS: A three-step search strategy will be utilized. Databases will include MEDLINE (PubMed), LILACS (BVS Portal), PsycINFO (APA PsycNet), CINAHL (EBSCO), Web of Science (Clarivate Analytics), Embase, and Scopus (Elsevier). The search strategy will be presented using a PRISMA flow diagram. Eligible studies will be critically appraised for methodological quality using the COSMIN Risk of Bias checklist. Criteria for good measurement properties of the selected scales will be summarized narratively using COSMIN, the Movement Disorder Society Rating Scale Program Committee methodology, the World Health Organization concepts, and the ABC taxonomy of medication adherence. The certainty of the evidence will be determined using the modified GRADE recommendations. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO (CRD42021211099).

Nursing and Parkinson's Disease: A Scoping Review of Worldwide Studies.

This scoping review aims to evaluate the characteristics of worldwide studies evolving the scope of nursing practice in Parkinson's disease (PD). We conducted a three-step search strategy using 11 databases and reference lists. Of the 4,174 screened studies we included 324 (8%). Most were published during 1978 to 2020, with significant increasing in publications from 2002 onwards and a forecast to double in the next 10 years (total expected = 614, ±62.2, R2 = .998). We identified studies involving nine contexts of nursing practice in PD, in four continents and 31 countries, most of them of observational design (47.2%), funded (52.2%), authored by nurses (70.1%), and related to Nursing care/Guidelines (32.1%), Educational/Research content (16.4%), Symptom management/Medication adherence (14.5%), and Family caregiving (11.1%). The worldwide studies evolving the scope of nursing practice in PD is growing in several health context. These results can guide future research and evidence-based practice involving the role of nurses in PD.