Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder-A descriptive population-based study from Switzerland.

BACKGROUND: Low participation in youth with autism spectrum disorder (ASD) has been reported, but age-related and contextual information is rare. OBJECTIVE: This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5-11) and adolescents (age: 12-17) with ASD in Switzerland. METHOD: A cross-sectional design used the German version of the Participation and Environment Measure-Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change. RESULTS: Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement. CONCLUSIONS: This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD.

Implementation of a patient-reported experience measure in a Dutch disability care organization: A process evaluation of cocreated tailored strategies.

INTRODUCTION: In 24/7 disability care facilities, patient-reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. METHODS: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick-offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. RESULTS: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID-19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. CONCLUSION: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility-specific learning goals. Stakeholder engagement and co-created strategies may have strengthened the adoption of and experiences with the implementation. PATIENT OR PUBLIC CONTRIBUTION: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact.

How do clients and (In)formal caregivers experience quality of home care? A qualitative approach.

AIM: To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people. DESIGN: A descriptive qualitative study was conducted using individual interviews. METHODS: Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi-structured interviews took place between April - November 2018. The INDividually EXperienced QUAlity of Long-term care framework was used to guide data collection and content analyses. RESULTS: The analyses revealed several important attributes contributing to experienced quality of home care such as a preferred small number of caregivers, perceived sufficient time for care provision and a caring atmosphere facilitating open communication and humour. Participants indicated that care routines fitting with the care receiver's former way of living were important. A more 'close' personal care relationship related to trust, openness and empathy was preferred over a more 'detached' professional care relationship. CONCLUSION: This study identified a wide range of attributes related to experienced quality of care from the perspectives of clients and formal and informal caregivers in home care. IMPACT: Care providers are being challenged to structurally assess individual experienced quality of home care. This study underlines the importance of incorporating care preferences and experiences throughout the care process from a relationship-centred care approach. Relevant care measures and outcomes should be determined to gain insight and further improve individual care provision.

Who said dialogue conversations are easy? The communication between communication vulnerable people and health-care professionals: A qualitative study.

OBJECTIVE: To gain insight into how communication vulnerable people and health-care professionals experience the communication in dialogue conversations, and how they adjust their conversation using augmentative and alternative communication (AAC) or other communication strategies. METHODS: Communication vulnerable clients and health-care professionals in a long-term care institution were observed during a dialogue conversation (n = 11) and subsequently interviewed (n = 22) about their experiences with the conversation. The clients had various communication difficulties due to different underlying aetiologies, such as acquired brain injury or learning disorder. Results from the observations and interviews were analysed using conventional content analysis. RESULTS: Seven key themes emerged regarding the experiences of clients and professionals: clients blame themselves for miscommunications; the relevance of both parties preparing the conversation; a quiet and familiar environment benefitting communication; giving clients enough time; the importance and complexity of nonverbal communication; the need to tailor communication to the client; prejudices and inexperience regarding AAC. The observations showed that some professionals had difficulties using appropriate communication strategies and all professionals relied mostly on verbal or nonverbal communication strategies. CONCLUSION: Professionals were aware of the importance of preparation, sufficient time, a suitable environment and considering nonverbal communication in dialogue conversations. However, they struggled with adequate use of communication strategies, such as verbal communication and AAC. There is a lack of knowledge about AAC, and professionals and clients need to be informed about the potential of AAC and how this can help them achieve equal participation in dialogue conversations in addition to other communication strategies.

Can resources moderate the impact of levels of frailty on adverse outcomes among (pre-) frail older people? A longitudinal study.

BACKGROUND: Higher levels of frailty result in higher risks of adverse frailty outcomes such as hospitalisation and mortality. There are, however, indications that more factors than solely frailty play a role in the development of these outcomes. The presence of resources, e.g. sufficient income and good self-management abilities, might slow down the pathway from level of frailty to adverse outcomes (e.g. mortality). In the present paper we studied whether resources (i.e. educational level, income, availability of informal care, living situation, sense of mastery and self-management abilities) moderate the impact of the level of frailty on the adverse outcomes mortality, hospitalisation and the development of disability over a two-year period. METHODS: Longitudinal data on a sample of 2420 community-dwelling pre-frail and frail older people were collected. Participants filled out a questionnaire every six months, including measures of frailty, resources and outcomes. To study the moderating effects of the selected resources their interaction effects with levels of frailty on outcomes were studied by means of multiple logistics and linear regression models. RESULTS: Frail older participants had increased odds of mortality and hospitalisation, and had more deteriorating disability scores compared to their pre-frail counterparts. No moderating effects of the studied resources were found for the outcomes mortality and hospitalisation. Only for the outcome disability statistically significant moderating effects were present for the resources income and living situation, yet these effects were in the opposite direction to what we expected. Overall, the studied resources showed hardly any statistically significant moderating effects and the directions of the trends were inconsistent. CONCLUSIONS: Frail participants were more at risk of mortality, hospitalisation, and an increase in disability. However, we were unable to demonstrate a clear moderating effect of the studied resources on the adverse outcomes associated with frailty (among pre-frail and frail participants). More research is needed to increase insight into the role of moderating factors. Other resources or outcome measures should be considered.

Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community: a qualitative diary study.

BACKGROUND: Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents' own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review. METHODS: A qualitative research inquiry was performed based on using a diary over a 7-day period to gather data. To systematically organise data into a structured format, content analysis has been applied using both inductive and deductive reasoning guided by the existing preliminary thematic framework. RESULTS: Analysis of the eligible diaries shows that the actions mentioned by the 47 parents describe several efforts to enhance participation of their children with a physical disability by using, enabling, or changing the social and physical environment, or by supporting their child to perform or engage in meaningful activities. Those parents' actions are primarily a result of challenges caused by restrictions in social and physical environments. Parental responses highlighted, above all, the need for environments designed for all people. Based on the findings a redefined thematic framework is presented. CONCLUSIONS: Parents' actions, challenges, and needs are mainly directed towards the social or/and physical environment. The presented thematic framework can offer practitioners knowledge to support parents. More work is necessary to provide tailored approaches. Paediatric rehabilitation may need to address the importance of the environment on the participation of a child with a physical disability.

The burden of neck pain: its meaning for persons with neck pain and healthcare providers, explored by concept mapping.

PURPOSE: To empirically define the concept of burden of neck pain. The lack of a clear understanding of this construct from the perspective of persons with neck pain and care providers hampers adequate measurement of this burden. An additional aim was to compare the conceptual model obtained with the frequently used Neck Disability Index (NDI). METHODS: Concept mapping, combining qualitative (nominal group technique and group consensus) and quantitative research methods (cluster analysis and multidimensional scaling), was applied to groups of persons with neck pain (n = 3) and professionals treating persons with neck pain (n = 2). Group members generated statements, which were organized into concept maps. Group members achieved consensus about the number and description of domains and the researchers then generated an overall mind map covering the full breadth of the burden of neck pain. RESULTS: Concept mapping revealed 12 domains of burden of neck pain: impaired mobility neck, neck pain, fatigue/concentration, physical complaints, psychological aspects/consequences, activities of daily living, social participation, financial consequences, difficult to treat/difficult to diagnose, difference of opinion with care providers, incomprehension by social environment, and how person with neck pain deal with complaints. All ten items of the NDI could be linked to the mind map, but the NDI measures only part of the burden of neck pain. CONCLUSION: This study revealed the relevant domains for the burden of neck pain from the viewpoints of persons with neck pain and their care providers. These results can guide the identification of existing measurements instruments for each domain or the development of new ones to measure the burden of neck pain.

Fried phenotype of frailty: cross-sectional comparison of three frailty stages on various health domains.

BACKGROUND: The population ageing in most Western countries leads to a larger number of frail older people. These frail people are at an increased risk of negative health outcomes, such as functional decline, falls, institutionalisation and mortality. Many approaches are available for identifying frailty among older people. Researchers most often use Fried and colleagues' description of the frailty phenotype. The authors describe five physical criteria. Other researchers prefer a combination of measurements in the social, psychological and/or physical domains. The aim of this study is to describe the levels of social, psychological and physical functioning according to Fried's frailty stages using a large cohort of Dutch community-dwelling older people. METHODS: There were 8,684 community-dwelling older people (65+) who participated in this cross-sectional study. Based on the five Fried frailty criteria (weight loss, exhaustion, low physical activity, slowness, weakness), the participants were divided into three stages: non-frail (score 0), pre-frail (score 1-2) and frail (score 3-5). These stages were related to scores in the social (social network type, informal care use, loneliness), psychological (psychological distress, mastery, self-management) and physical (chronic diseases, GARS IADL-disability, OECD disability) domains. RESULTS: 63.2% of the participants was non-frail, 28.1% pre-frail and 8.7% frail. When comparing the three stages of frailty, frail people appeared to be older, were more likely to be female, were more often unmarried or living alone, and had a lower level of education compared to their pre-frail and non-frail counterparts. The difference between the scores in the social, psychological and physical domains were statistically significant between the three frailty stages. The most preferable scores came from the non-frail group, and least preferable scores were from the frail group. For example use of informal care: non-frail 3.9%, pre-frail 23.8%, frail 60.6%, and GARS IADL-disability mean scores: non-frail 9.2, pre-frail 13.0, frail 19.7. CONCLUSION: When older people were categorised according to the three frailty stages, as described by Fried and colleagues, there were statistically significant differences in the level of social, psychological and physical functioning between the non-frail, pre-frail and frail persons. Non-frail participants had consistently more preferable scores compared to the frail participants. This indicated that the Fried frailty criteria could help healthcare professionals identify and treat frail older people in an efficient way, and provide indications for problems in other domains.

Systematic implementation of evidence-based practice in a clinical nursing setting: a participatory action research project.

AIMS AND OBJECTIVES: To describe the process of implementing evidence-based practice in a clinical nursing setting. BACKGROUND: Evidence-based practice has become a major issue in nursing, it is insufficiently integrated into daily practice and its implementation is complex. DESIGN: Participatory action research. METHODS: The main participants were nurses working in a lung unit of a rural hospital. A multi-method process of data collection was used during the observing, reflecting, planning and acting phases. Data were continuously gathered during a 24-month period from 2010 to 2012, and analysed using an interpretive constant comparative approach. Patients were consulted to incorporate their perspective. RESULTS: A best-practice mode of working was prevalent on the ward. The main barriers to the implementation of evidence-based practice were that nurses had little knowledge of evidence-based practice and a rather negative attitude towards it, and that their English reading proficiency was poor. The main facilitators were that nurses wanted to deliver high-quality care and were enthusiastic and open to innovation. Implementation strategies included a tailored interactive outreach training and the development and implementation of an evidence-based discharge protocol. The academic model of evidence-based practice was adapted. Nurses worked according to the evidence-based practice discharge protocol but barely recorded their activities. Nurses favourably evaluated the participatory action research process. CONCLUSIONS: Action research provides an opportunity to empower nurses and to tailor evidence-based practice to the practice context. Applying and implementing evidence-based practice is difficult for front-line nurses with limited evidence-based practice competencies. RELEVANCE TO CLINICAL PRACTICE: Adaptation of the academic model of evidence-based practice to a more pragmatic approach seems necessary to introduce evidence-based practice into clinical practice. The use of scientific evidence can be facilitated by using pre-appraised evidence. For clinical practice, it seems relevant to integrate scientific evidence with clinical expertise and patient values in nurses' clinical decision-making at the individual patient level.

Participation and social participation: are they distinct concepts?

INTRODUCTION: The concept of participation has been extensively used in health and social care literature since the World Health Organization introduced its description in the International Classification of Functioning, Disability and Health (ICF) in 2001. More recently, the concept of social participation is frequently used in research articles and policy reports. However, in the ICF, no specific definition exists for social participation, and an explanation of differences between the concepts is not available. AIM: The central question in this discussion article is whether participation, as defined by the ICF, and social participation are distinct concepts. This article illustrates the concepts of participation and social participation, presents a critical discussion of their definitions, followed by implications for rehabilitation and possible future directions. DISCUSSION: A clear definition for participation or social participation does not yet exist. Definitions for social participation differ from each other and are not sufficiently distinct from the ICF definition of participation. Although the ICF is regarded an important conceptual framework, it is criticised for not being comprehensive. The relevance of societal involvement of clients is evident for rehabilitation, but the current ICF definition of participation does not sufficiently capture societal involvement. CONCLUSION: Changing the ICF's definition of participation towards social roles would overcome a number of its shortcomings. Societal involvement would then be understood in the light of social roles. Consequently, there would be no need to make a distinction between social participation and participation.

The feasibility and test-retest reliability of the Dutch Swal-Qol adapted interview version for dysphagic patients with communicative and/or cognitive problems.

PURPOSE: The adaptation of the Dutch Swal-Qol questionnaire to an interview format suitable for dysphagic patients with communicative and/or cognitive problems and evaluation of the feasibility and test-retest reliability. METHODS: An observational study with two measurements within a 2-week time period in a sample of 57 stroke patients with dysphagia in a nursing home environment. The interview version of the Swal-Qol was evaluated in the total group and in subgroups of patients with and without communicative and/or cognitive problems. RESULTS: The constructed interview version was considered feasible from an expert's and patient's point of view. The overall score and seven subscales of the Swal-Qol showed an excellent test-retest reliability (k > 0.75), and two subscales were considered good (k > 0.60). CONCLUSIONS: This study showed that using a structured, and at the same time flexible, interview format tailored to the individual needs of stroke patients enhances the feasibility and does not compromise the test-retest reliability.

Investigating the Dutch Movement-Specific Reinvestment Scale in people with stroke.

OBJECTIVE: Reinvestment is a phenomenon in which conscious control of movements that are best controlled automatically disrupts performance. The propensity for reinvestment may therefore play an important role in the movement rehabilitation process. The Movement-Specific Reinvestment Scale measures an individual's propensity for reinvestment. The aim of this study was to translate the scale for use with Dutch participants with stroke and to assess its reliability. DESIGN: A test-retest design. SETTING: In community after discharge from rehabilitation centre. SUBJECTS: Forty-five people with stroke. MEASURES: Reliability of the translated scale was assessed using intraclass correlation coefficients (ICC) and Bland-Altman plot. RESULTS: The ICC was 0.85 (95% confidence interval (CI) 0.74-0.91). Limits of agreement ranged from -2.38 to 3.10. CONCLUSION: The Dutch Movement-Specific Reinvestment Scale appears to be a reliable tool with which to assess the propensity for movement-specific reinvestment by people with stroke.

Parents' Perceptions: Environments and the Contextual Strategies of Parents to Support the Participation of Children and Adolescents with Autism Spectrum Disorder-A Descriptive Population-Based Study from Switzerland.

Environments have a modifying effect on the participation of children and adolescents with autism spectrum disorder (ASD) in all areas of life. This cross-sectional study investigated parental perspectives on supportive or hindering environments and the daily contextual strategies parents used to enhance their children's participation. Qualitative and quantitative data gathered from 115 parents from German-speaking Switzerland using the participation and environment measure-child and youth (PEM-CY) were analyzed. Results revealed 45 environmental supports and barriers at home, at school, and in the community. Contextual strategies were identified in combination with people, activities, time, objects, and places. Parental perspectives on participation and their contextual strategies should be considered in environmental-based interventions to support the participation of children and adolescents with ASD.

Current use and barriers and facilitators for implementation of standardised measures in physical therapy in the Netherlands.

BACKGROUND: In many countries, the need for physical therapists to use standardised measures has been recognised and is recommended in clinical practice guidelines. Research has shown a lack of clinimetric knowledge and clinical application of measurement instruments in daily practice may hamper implementation of these guidelines. OBJECTIVES: The aims of our study were a) to investigate the current use of measurement instruments by Dutch physical therapists; b) to investigate the facilitators and barriers in using measurement instruments. METHODS: To get a complete and valid overview of relevant barriers and facilitators, different methods of data collection were used. We conducted a literature search, semi-structured interviews with 20 physical therapists and an online survey. RESULTS: Facilitators are the fact that most therapists indicated a positive attitude and were convinced of the advantages of the use of measurement instruments. The most important barriers to the use of measurement instruments included physical therapists' competence and problems in changing behaviour, practice organisation (no room; no time) and the unavailability and feasibility of measurement instruments. Furthermore, physical therapists indicated the need to have a core set of measurement instruments with a short user's instruction on application, scoring and interpretation. CONCLUSIONS: The main barriers are on the level of the physical therapist (lack of knowledge; not focusing on the use of outcome measures) and organisation (lack of time; availability; lack of management support).There seems to be a disparity between what physical therapists say and what they do. The majority of participating physical therapists indicated a positive attitude and were convinced of the advantages of the use of measurement instruments. However, the main problem for physical therapists is when to use which instrument for what patient (lack of knowledge). Furthermore, physical therapists indicated a need to compile a core set of measurement instruments with instructions concerning application, scoring and interpretation. Based on the identified factors, a number of strategies will be developed and evaluated in future studies.

Factors That Influence the Use of Electronic Diaries in Health Care: Scoping Review.

BACKGROUND: A large number of people suffer from psychosocial or physical problems. Adequate strategies to alleviate needs are scarce or lacking. Symptom variation can offer insights into personal profiles of coping and resilience (detailed functional analyses). Hence, diaries are used to report mood and behavior occurring in daily life. To reduce inaccuracies, biases, and noncompliance with paper diaries, a shift to electronic diaries has occurred. Although these diaries are increasingly used in health care, information is lacking about what determines their use. OBJECTIVE: The aim of this study was to map the existing empirical knowledge and gaps concerning factors that influence the use of electronic diaries, defined as repeated recording of psychosocial or physical data lasting at least one week using a smartphone or a computer, in health care. METHODS: A scoping review of the literature published between January 2000 and December 2018 was conducted using queries in PubMed and PsycInfo databases. English or Dutch publications based on empirical data about factors that influence the use of electronic diaries for psychosocial or physical purposes in health care were included. Both databases were screened, and findings were summarized using a directed content analysis organized by the Consolidated Framework for Implementation Research (CFIR). RESULTS: Out of 3170 articles, 22 studies were selected for qualitative synthesis. Eleven themes were determined in the CFIR categories of intervention, user characteristics, and process. No information was found for the CFIR categories inner (eg, organizational resources, innovation climate) and outer (eg, external policies and incentives, pressure from competitors) settings. Reminders, attractive designs, tailored and clear data visualizations (intervention), smartphone experience, and intrinsic motivation to change behavior (user characteristics) could influence the use of electronic diaries. During the implementation process, attention should be paid to both theoretical and practical training. CONCLUSIONS: Design aspects, user characteristics, and training and instructions determine the use of electronic diaries in health care. It is remarkable that there were no empirical data about factors related to embedding electronic diaries in daily clinical practice. More research is needed to better understand influencing factors for optimal electronic diary use.

Stories of Lymphoma Survivors in Early Aftercare: A Narrative Inquiry.

BACKGROUND: Survivors of lymphoma experience multiple challenges after treatment. However, a lack of knowledge of in-depth experiences of lymphoma survivors in early aftercare persists. OBJECTIVE: To gain an in-depth understanding of the experiences of lymphoma survivors in early aftercare who have received an aftercare consultation based on evidence-based guideline recommendations, with an advanced practice nurse. METHODS: This study used a narrative design. We recruited lymphoma survivors after a best-practice aftercare consultation with an advanced practice nurse. A total of 22 lymphoma survivors and 9 partners participated. Data were collected through narrative interviews and analyzed according to thematic narrative analysis. RESULTS: Six themes emerged: living and dealing with health consequences, coping with work and financial challenges, having a positive outlook and dealing with uncertainty, deriving strength from and experiencing tensions in relationships, getting through tough times in life, and receiving support from healthcare professionals. CONCLUSIONS: The stories of lymphoma survivors in early aftercare revealed their experiences of how they coped with a range of challenges in their personal lives. Choosing an aftercare trajectory based on an aftercare consultation that encourages patients to think about their issues, goals, and possible aftercare options may be useful for their transition from treatment to survivorship. IMPLICATIONS FOR PRACTICE: Survivors' social support and self-management capabilities are important aspects to be addressed in cancer care. An aftercare consultation involving shared goal setting and care planning may help nurses provide personalized aftercare.

How to support a co-creative research approach in order to foster impact. The development of a Co-creation Impact Compass for healthcare researchers.

Active participation of stakeholders in health research practice is important to generate societal impact of outcomes, as innovations will more likely be implemented and disseminated in clinical practice. To foster a co-creative process, numerous frameworks and tools are available. As they originate from different professions, it is not evident that health researchers are aware of these tools, or able to select and use them in a meaningful way. This article describes the bottom-up development process of a compass and presents the final outcome. This Co-creation Impact Compass combines a well-known business model with tools from design thinking that promote active participation by all relevant stakeholders. It aims to support healthcare researchers to select helpful and valid co-creation tools for the right purpose and at the right moment. Using the Co-creation Impact Compass might increase the researchers' understanding of the value of co-creation, and it provides help to engage stakeholders in all phases of a research project.

The ability of four frailty screening instruments to predict mortality, hospitalization and dependency in (instrumental) activities of daily living.

The aim of this study was to assess the predictive ability of the frailty phenotype (FP), Groningen Frailty Indicator (GFI), Tilburg Frailty Indicator (TFI) and frailty index (FI) for the outcomes mortality, hospitalization and increase in dependency in (instrumental) activities of daily living ((I)ADL) among older persons. This prospective cohort study with 2-year follow-up included 2420 Dutch community-dwelling older people (65+, mean age 76.3 ± 6.6 years, 39.5% male) who were pre-frail or frail according to the FP. Mortality data were obtained from Statistics Netherlands. All other data were self-reported. Area under the receiver operating characteristic curves (AUC) was calculated for each frailty instrument and outcome measure. The prevalence of frailty, sensitivity and specificity were calculated using cutoff values proposed by the developers and cutoff values one above and one below the proposed ones (0.05 for FI). All frailty instruments poorly predicted mortality, hospitalization and (I)ADL dependency (AUCs between 0.62-0.65, 0.59-0.63 and 0.60-0.64, respectively). Prevalence estimates of frailty in this population varied between 22.2% (FP) and 64.8% (TFI). The FP and FI showed higher levels of specificity, whereas sensitivity was higher for the GFI and TFI. Using a different cutoff point considerably changed the prevalence, sensitivity and specificity. In conclusion, the predictive ability of the FP, GFI, TFI and FI was poor for all outcomes in a population of pre-frail and frail community-dwelling older people. The FP and the FI showed higher values of specificity, whereas sensitivity was higher for the GFI and TFI.

Implementing Experience Sampling Technology for Functional Analysis in Family Medicine - A Design Thinking Approach.

BACKGROUND: A paradigm shift in health care from illness to wellbeing requires new assessment technologies and intervention strategies. Self-monitoring tools based on the Experience Sampling Method (ESM) might provide a solution. They enable patients to monitor both vulnerability and resilience in daily life. Although ESM solutions are extensively used in research, a translation from science into daily clinical practice is needed. OBJECTIVE: To investigate the redesign process of an existing platform for ESM data collection for detailed functional analysis and disease management used by psychological assistants to the general practitioner (PAGPs) in family medicine. METHODS: The experience-sampling platform was reconceptualized according to the design thinking framework in three phases. PAGPs were closely involved in co-creation sessions. In the 'understand' phase, knowledge about end-users' characteristics and current eHealth use was collected (nominal group technique - 2 sessions with N = 15). In the 'explore' phase, the key needs concerning the platform content and functionalities were evaluated and prioritized (empathy mapping - 1 session with N = 5, moderated user testing - 1 session with N = 4). In the 'materialize' phase, the adjusted version of the platform was tested in daily clinical practice (4 months with N = 4). The whole process was extensively logged, analyzed using content analysis, and discussed with an interprofessional project group. RESULTS: In the 'understand' phase, PAGPs emphasized the variability in symptoms reported by patients. Therefore, moment-to-moment assessment of mood and behavior in a daily life context could be valuable. In the 'explore' phase, (motivational) functionalities, technological performance and instructions turned out to be important user requirements and could be improved. In the 'materialize' phase, PAGPs encountered barriers to implement the experience-sampling platform. They were insufficiently facilitated by the regional primary care group and general practitioners. CONCLUSION: The redesign process in co-creation yielded meaningful insights into the needs, desires and daily routines in family medicine. Severe barriers were encountered related to the use and uptake of the experience-sampling platform in settings where health care professionals lack the time, knowledge and skills. Future research should focus on the applicability of this platform in family medicine and incorporate patient experiences.

Substitution of Fried's performance-based physical frailty criteria with self-report questions.

OBJECTIVE: To identify self-report questions that can substitute Fried's performance-based frailty measures for use in large-scale studies and daily practice. METHODS: A cross-sectional study was conducted among community dwelling older people (65+). Based on a literature search and interviews with older people and experts, 11 questions concerning walk time and 10 on handgrip strength were selected. All participants completed these sets of self-report questions as well as the original Fried criteria (including performance-based tests). Regression analyses were performed to find the questions that best substituted the performance-based tests. RESULTS: In total, 135 individuals (mean age 73.8±7.0, 58.5% female) in different stages of frailty (non-frail 38.5%, pre-frail 40.7%, frail 20.7%) were included. Regression analyses revealed four questions for walk time and two for handgrip strength. Cut-off values of three for walk time (range 0-5) and one for handgrip strength (range 0-3) seem most optimal. This resulted in a sensitivity of 69.2%, 86.1% specificity and 79.4% agreement for walk time and a sensitivity of 73.2%, 71.3% specificity and 71.9% agreement for handgrip strength. The comparison of frailty stages using frailty criteria including the performance-based measures and scores based solely on self-report questions, resulted in an observed agreement of 71.1% (kappa value=0.55). CONCLUSIONS: Considering the agreement between the questions and the performance-based tests, these two sets of questions might be used in settings where the performance-based tests of walk time and handgrip strength are unfeasible, such as in daily practice and large-scale research.