The ambiguity of the concept of participation in measurement instruments: operationalization of participation influences research outcomes

2014 ◽  
Vol 28 (12) ◽  
pp. 1225-1236 ◽  
Author(s):  
Hillegonda A Stallinga ◽  
Pieter U Dijkstra ◽  
Isaac Bos ◽  
Yvonne F Heerkens ◽  
Petrie F Roodbol
Keyword(s):  
Social Relations ◽  
Sense Of Coherence ◽  
Neuromuscular Disease ◽  
Prediction Models ◽  
University Hospital ◽  
International Classification Of Functioning ◽  
Personal Factors ◽  
Measurement Instruments ◽  
Disease Impact ◽  
The Impact

Objective: This study explores, based on the International Classification of Functioning, Disability and Health, the consequences of different operationalizations of participation in regression models predicting participation in one sample of patients. Design: Cross-sectional, comparative study. Setting: Department of Neurology of a University Hospital. Subjects: A total of 677 patients with a Neuromuscular Disease. Measures: Participation was measured using the Neuromuscular Disease Impact Profile questionnaire, the RAND-36 Item Health Survey (social functioning, role limitations—physical, role limitations—emotional) and the Impact on Participation and Autonomy questionnaire (autonomy outdoors, social relations). Potential predictors of participation included type of neuromuscular disease, body functions (measured with Neuromuscular Disease Impact Profile), activities (measured with Neuromuscular Disease Impact Profile), environmental factors (measured with Neuromuscular Disease Impact Profile), and personal factors (measured with the 13-item Sense of Coherence questionnaire). The results were controlled for patient characteristics. Results: Participation was statistically predicted by different determinants depending on the operationalization used for participation. Additionally, the regression coefficients differed significantly. Body functions and activities were predictors in five out of six operationalizations of participation. Sense of coherence predicted participation in all of the operationalizations. The explained variance of the different models ranged from 25% (RAND-36 role limitations—emotional) to 65% (Neuromuscular Disease Impact Profile). Conclusions: Different operationalizations of participation result in different prediction models. Lack of conceptual consensus makes participation an ambiguous concept in research, and this ambiguity makes evidence-based decisions directed at enhancing participation difficult. Participation needs to be operationalized in an unambiguous and standard way in order to improve the comparability of outcomes.

scholarly journals A delphi procedure on rehabilitation outcome for patients with moderate to severe traumatic brain injury; first phase of the Neurotraumatology Quality Registry (NET-QURE)

2021 ◽  
Author(s):  
Lianne D. Peppel ◽  
Majanka H. Heijenbrok-Kal ◽  
Thomas A. Van Essen ◽  
Godard C. W. De Ruiter ◽  
Wilco C. Peul ◽  
...  
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Psychological Functioning ◽  
International Classification Of Functioning ◽  
Self Awareness ◽  
Personal Factors ◽  
Measurement Instruments ◽  
Rehabilitation Outcome ◽  
Quality Registry ◽  
Delphi Procedure

Objective: To select a set of rehabilitation outcome instruments for a national Neurotrauma Quality Registry (Net-QuRe) among professionals involved in the care of patients with traumatic brain injury. Design: A 3-round online Delphi procedure. Subjects: Eighty professionals from multiple disciplines working in 1 of the 8 participating rehabilitation centres were invited to participate. The response rate varied from 70% to 76% per round. Methods: For the Delphi procedure, multiple outcome categories were defined based on the International Classification of Functioning, Disability and Health (ICF) with concomitant measurement instruments. For each category we strived for consensus on one instrument of at least 75%. Results: After the first round, consensus was reached for the category subjective cognitive functioning. After the second round for quality of life, pain, general functioning, anxiety and depression, general psychological functioning, communication (impairment), and personal factors. Finally, after the third round, consensus was reached for activities of daily living, participation, self-awareness, and aphasia. No consensus was reached for the categories motor function, cognitive function, comorbidity, fatigue, and employment status. Conclusion: Consensus was reached in 12 out of 17 outcome categories. A Delphi procedure seems to be a feasible method to collectively select measurement instruments for a multicentre study.

scholarly journals Psoriasis – the impact on an individual´s mental state and quality of life

2019 ◽  
Vol 5 (2) ◽  
pp. 187-195
Author(s):  
Šárka Vévodová ◽  
Filip Havelka ◽  
Jiří Vévoda ◽  
Bronislava Grygová
Keyword(s):  
Quality Of Life ◽  
Social Relations ◽  
Negative Correlation ◽  
Negative Impact ◽  
University Hospital ◽  
Control Group ◽  
Healthy Population ◽  
Level Of Significance ◽  
The Impact

Introduction: Psoriasis is a chronic skin disease characterized by scaly patches affecting approximately 2-5% of the population. The disease has a negative impact on quality of life and, therefore, psoriatic patients often develop depression. Our work deals with quality of life and depression in psoriasis sufferrers and strives to determine the correlation between their quality of life and depression. Methods: The research took place in the University Hospital Olomouc in 2017 and used questionnaires WHOQOL-BREF and BDI-II. 50 patients with psoriasis were chosen randomly. To process the data we used Mann-Whitney test (the level of significance = 5%) and Spearman´s correlation coefficient (the level of significance = 1%). Results: The results proved that psoriasis has a significant impact on quality of life. The scores for the overall life quality as well as for individual domains were significantly lower in psoriatic patients than in the control group (p<0.001). The degree of depression in patients with psoriasis showed statistically significant correlation in all domains of the quality of life. We proved negative correlation in the overall quality of life (rs =- 0.691**), physical condition (rs =-0.499**), social relations (rs =-0.546**), overall health (rs =-0.396**), and environment (rs =-0.386**). Conclusion: With regard to the ascertained negative correlation between psoriasis and depression and lower quality of life of the sufferers compared to the healthy population, it is essential for healthcare professionals to pay attention not only to somatic manifestations of the disease but also to the patients´ mental health.

Customer service communication with customers with disability

2019 ◽  
Vol 36 (1) ◽  
pp. 228-239 ◽  
Author(s):  
Susan Elizabeth Taylor ◽  
Susan Balandin ◽  
Erin Wilson ◽  
Kevin Murfitt
Keyword(s):  
Customer Service ◽  
Social Inclusion ◽  
Good Practice ◽  
International Classification Of Functioning ◽  
Personal Factors ◽  
Content Type ◽  
Factors Affecting ◽  
The Social ◽  
Communication Needs ◽  
The Impact

PurposeThe purpose of this paper is to review published research on retail customer service communication with people with complex communication needs (CCN) and impacts on their social inclusion.Design/methodology/approachThe researchers searched electronic databases EBSCOHost and Web of Science and found no studies on retail customers with CCN. The search was expanded with the intention of exploring factors affecting people with disability as a group and to locate the experience of people with CCN within findings. Studies found were reviewed by the first author and two external reviewers.FindingsTwelve articles met the broadened inclusion criteria. Analysis using the International Classification of Functioning, Disability and Health (ICF) found the literature demonstrated some environmental and personal factors that are likely to construct disability in the retail environment for people with CCN. The authors proposed further research to further explore ICF factors not identified in research and to establish links with social inclusion.Research limitations/implicationsFurther research is needed to understand the role of retail customer service communication in the social inclusion of people with CCN.Social implicationsThe social inclusion of people with CCN will be assisted by findings on good practice customer service communication.Originality/valueShopping is rarely considered in social inclusion research. This review discovered an absence of research into the impact of retail customer communication on inclusion of customers with CCN and proposed a framework for further enquiry.

Progress on Incorporating the Patient Perspective in Outcome Assessment in Rheumatology and the Emergence of Life Impact Measures at OMERACT 9

2009 ◽  
Vol 36 (9) ◽  
pp. 2071-2076 ◽  
Author(s):  
JOHN R. KIRWAN ◽  
STANTON NEWMAN ◽  
PETER S. TUGWELL ◽  
GEORGE A. WELLS ◽  
SARAH HEWLETT ◽  
...  
Keyword(s):  
Patient Perspective ◽  
Educational Interventions ◽  
International Classification Of Functioning ◽  
Measurement Instruments ◽  
Core Set ◽  
Life Impact ◽  
Rheumatic Conditions ◽  
Sleep Questionnaires ◽  
The Impact ◽  
Emergence Of Life

The Patient Perspective Workshop included over 100 researchers and 18 patient participants from 8 countries. Following preconference reading and short plenary presentations, breakout groups considered work undertaken on measurement of sleep, assessing interventions to develop the effective consumer, and assessing psychological and educational interventions. The workshop explored the best way to identify other outcome domains (and instruments) that should be measured in observational or interventional studies with broader intentions than simply altering outcomes captured in the traditional “core set” plus fatigue. Four sleep questionnaires showed promise and will be the subject of further study. The Effective Consumer scale (EC-17) was reviewed and the concept Effective Consumer was well received. Participants thought it worthwhile to measure the skills and attributes of an effective consumer and develop an intervention that would include education in all of the scale’s categories. Assessment of educational and psychological interventions requires a wider set of instruments than is currently used; these should relate to the purpose of the intervention. This principle was extended to include wider measures of the impact of disease on life, as indicated in the International Classification of Functioning, Disability and Health. Life impact measure sets covering domains appropriate to different rheumatic conditions and focused on different interventions might be defined by future OMERACT consensus. Measurement instruments within these domains that are valid for use in rheumatic conditions can then be identified and, in the case of psychological and educational interventions, chosen to fit with the purpose of the intervention.

scholarly journals AB0717 THE ASAS-HEALTH INDEX MAY BE USEFUL TO IDENTIFY DISEASE ACTIVITY STATES IN PATIENTS WITH SPONDYLOARTHRITIS.

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1654.3-1654
Author(s):  
S. Alonso Castro ◽  
E. Pardo Campo ◽  
L. C. Charca Benavente ◽  
M. Pino Martínez ◽  
S. Fernández ◽  
...  
Keyword(s):  
Disease Activity ◽  
Roc Curve ◽  
International Classification Of Functioning ◽  
Inactive Disease ◽  
P Value ◽  
Health Index ◽  
Asas Criteria ◽  
Disease Impact ◽  
The Impact ◽  
Low Activity

Background:Patients with spondyloarthritis (SpA) suffer not only from pain or physical disability, but they are also affected in multiple facets of life due to this condition (disease impact). Recently, the ASAS group has proposed a new way of capturing the impact that SpA have on patients’ lives, based on the principles proposed by the International classification of functioning, disability and health (ICF). The tool obtained (ASAS-health index or ASAS-HI) includes 17 items that cover most ICF domains.Objectives:To analyze the performance of ASAS-HI in real clinical practice, by comparing it with other standard measures of evaluation of SpA. To assess whether ASAS-HI is able to identify disease activity states in these patients.Methods:This cross-sectional study included 111 consecutive patients with SpA (ASAS criteria). The correlation (Spearman’s rho) between ASAS-HI, BASDAI, ASDAS, and BASFI was analyzed. ROC curves were constructed to analyze ASAS-HI values that determined BASDAI remission, ASDAS inactive disease, and ASDAS low activity. A logistic regression was made to determine the ASAS-HI items with greater capability to discriminate the state of remission / inactive disease.Results:Seventy-four men and 37 women were included, mean age of 43.3 ± 10.6 years. The average duration of illness was 7.6 ± 6.8 years. Sixty percent of the series was under biological therapy. HLA-B27 was positive in 79.3%. The average value of ASAS-HI was 5.4 ± 3.8. There were significant correlations between ASDAS and BASDAI (rho: 0.89, p <0.0005), BASDAI and BASFI (rho: 0.86, p <0.0005), BASFI and ASDAS (rho: 0.78, p <0.0005), BASDAI and ASAS-HI (rho: 0.77, p <0.0005), ASDAS and ASAS-HI (rho: 0.70, p <0.0005). The optimal cut-off point of ASAS-HI for BASDAI remission (Table 1) corresponded to a value ≤ 2. As for the value of ASAS-HI to define ASDAS inactive disease (Table 2), this was ≤ 0. For ASDAS low activity, the value was ≤ 6 [area under the ROC curve 0.82 (95% CI: 0.73-0.89), Sen: 89.5%, Spe: 66.1). In the multivariate regression, the two ASAS-HI items associated with BASDAI non-remission were, “I often get frustrated” [OR 9.2 (95% CI: 1.2-69.4), p = 0.032], and “I sleep badly at night” [OR 7.7 (95% CI: 1.4-41.6), p = 0.018). As for ASDAS, the only question of ASAS-HI significantly associated with active disease was “pain sometimes disrupts my normal activities” [OR 8.7 (95% CI: 1.7-45.2), p = 0.010].Conclusion:ASAS-HI correlates well with most outcome measures in SpA. A cut-off point of ASAS-HI ≤ 6 identifies a low disease activity and could be considered a good treatment objective. The evaluation of SpA should include not only conventional measures (BASDAI / ASDAS) but also disease impact measures (ASAS-HI).Table 1.Area under the ROC curve (AUC)0.88395% CI0.809-0.936p-value<0.0001Optimal cut-off point≤2Sensitivity65.71Specificity96.05Table 2.Area under the ROC curve (AUC)0.87395% CI0.797-0.929p-value<0.0001Optimal cut-off point≤0Sensitivity58.82Specificity94.68Disclosure of Interests:None declared

scholarly journals Social Representation of Disability and Teachers

2021 ◽  
Vol 11 (6) ◽  
pp. 266
Author(s):  
Sara Rizzo ◽  
Alessandro Frolli ◽  
Antonella Cavallaro ◽  
Giuseppina Sinigaglia ◽  
Sebastiano Scire
Keyword(s):  
Teaching Experience ◽  
Social Representation ◽  
Previous Experience ◽  
International Classification Of Functioning ◽  
Future Research ◽  
Personal Factors ◽  
The Social ◽  
Consequent Reduction ◽  
Specialized Education ◽  
The Impact

With the International Classification of Functioning, Disability and Health (ICF), the term disability is consolidated in its dynamic meaning as a condition that is defined by the interaction between personal factors and the environment in which one lives (WHO, 2001). The characteristics of the reference context that can be an obstacle or facilitation are evaluated with greater emphasis, including the perception of disability by teachers as a factor that will mediate the implementation of different behaviors and methodologies stemming from it. The purpose of the present survey, which includes 422 teachers attending a specialization course for support activities and was conducted through the administration of a questionnaire, was precisely to evaluate this perception. In particular, it evaluated the following: the differences in starting and finishing the specialization course for the achievement of the teaching qualification in support, the impact of previous experience with the disability, and the motivation to teach. Outcomes display a progressive normalization in the characteristics of a person with disabilities. The teaching strategies undergo a change between the beginning and the end of the course, with a focus from the general to the particular, becoming more targeted and detailed. In terms of opinions, emotions, and concerns, familiarity with disability seems to produce a less prejudicial and stereotyped representation, as does the teaching experience with a disabled pupil. The importance of active previous experience is confirmed in order to develop a better representation with a consequent reduction in prejudice. Further data emerge in terms of increased ability, at the end of the course, to verbally discriminate the concepts of inclusion and integration, with probable differences in approaches. The motivation for teaching is confirmed to be connected to job placement and therefore should be further investigated with scales that control the social desirability of the response. The present study shows the importance of both the perception of familiarity with disability and specialized education in supporting disabled students. We hope that future research might further investigate this area in order to improve the quality of life of disabled people through better relations with teachers and better academic outcomes.

scholarly journals Icf-based functional profile in education and rehabilitation: a multidisciplinary pilot experience

2020 ◽  
pp. 43-48
Author(s):  
Pasqualotto Luciano ◽  
Lascioli Angelo
Keyword(s):  
Social Inclusion ◽  
Monitoring And Evaluation ◽  
Organizational Level ◽  
International Classification Of Functioning ◽  
Local Health ◽  
Personal Factors ◽  
Life Project ◽  
Pilot Experience ◽  
The Individual ◽  
The Impact

Following the changes introduced by Legislative Decree no. 66/2017, the Multidisciplinary Evaluation Unitsestablished at the local health districts are mandated to draft a Functioning Profile (FP) based on the ICF Classification, for the purposes of establishing an Individual Project (Law No. 328 / 2000, art.14), as well as thepreparation of the Individualized Educational Plan (PEI) (Legislative Decree no. 66/2017, art. 5). The innovation introduced by the legislation is far-reaching, not only for the impact it has on the organization of the Services and on the procedures relating to school support and accompaniment towards the Life Project. Particularly relevant is the change of perspective brought by the adoption of the anthropological model of the International Classification of Functioning, Disability and Health (ICF). If, so far, the condition of disability hasbeen assessed on the basis of clinical parameters, the Functioning Profile now requires a biopsychosocial assessment of the person which will consider not only deficits and impairments, as well as its effect on the development process of personal experiences (personal factors) and the setting of daily life (environmental factors). Indeed, this threefold focal lens is the only means to comprehend the overall condition of a person with disability – encompassing their needs and wishes – which is intertwined to the quality and the complexity of the social networkto which they belong. Accordingly, the regulation foresees that drafting of the FP be jointly carried forth by physicians, rehabilitationprofessionals, evolutional age psychologists, evolutionary psychologists, social workers, paedagogists, specializedteachers, parents, and not least the very individual as by the principal of autodetermination. Following the modifications introduced with such Decree, the University of Verona began a trial aimed at developing n ICF-based FP model that is both sustainable an organizational level and functional to planning the Individual Projects and the PEI. Such trial has involved the Scaligera local health district ‘ULSS Company no. 9 a delegation of family Pediatricians of the province and the Local School Office in Verona. The FP model produced in the pilot experience which is still active, contains some particular features that allow is formal as well as dynamic use in both the design and the monitoring and evaluation of educational, rehabilitation and care interventions. For this purpose, we created an online platform that processes the data collected and makes it available to the user in real time providing a series of qualitative and quantitative graphs and indicators, describing the biopsychosocial functioning of the subject and his/her needs for social inclusion. The present article describes the main elements of this pilot experience and the results obtained.

scholarly journals Experience of Pediatric Patients with Chronic Renal Disease at "Mother Theresa" University Hospital Center

2015 ◽  
Vol 5 (1) ◽  
pp. 451
Author(s):  
Jeta Ajasllari
Keyword(s):  
Renal Disease ◽  
Social Relations ◽  
Chronic Renal Disease ◽  
Psychological Impact ◽  
University Hospital ◽  
Study Results ◽  
Multidisciplinary Staff ◽  
Physical Impact ◽  
The Impact ◽  
Hospital Center

The aim of this study was to present a better understanding of the illness, needs of patients with this type of pathology. Participants on the interview were 15 children and adolescents of age 11-15 years old diagnosed at “Mother Teresa” University Hospital Center, Nephrology Department. To draw the study results it was used “Nvivo” software, where through a careful analyzing process were identified four key topics: Physical impact (medical treatment); psychological impact (anxiety, difficulties they face); impact on social relations (family, activities and relations with age mates); way of adaption (self belief, religious belief, multidisciplinary staff). The findings reveal the impact of the illness on the life of the patients all over the illness course. The main recommending of this study are based on deepened exploration of the patients’ perception of the illness setting up an appropriate program to support patients with chronic renal disease as well as their families.

scholarly journals Problems and Life Effects Experienced by Tinnitus Research Study Volunteers: An Exploratory Study Using the ICF Classification

2018 ◽  
Vol 29 (10) ◽  
pp. 936-947 ◽  
Author(s):  
Vinaya Manchaiah ◽  
Eldré W. Beukes ◽  
Sarah Granberg ◽  
Naresh Durisala ◽  
David M. Baguley ◽  
...  
Keyword(s):  
Research Study ◽  
International Classification Of Functioning ◽  
Rank Test ◽  
Activity Limitations ◽  
Personal Factors ◽  
Cross Sectional Survey ◽  
Handling Stress ◽  
Body Function ◽  
Participation Restrictions ◽  
The Impact

AbstractTinnitus is one of the most distressing hearing-related symptoms. It is often associated with a range of physiological and psychological complications, such as depression, anxiety, and insomnia. Hence, approaching tinnitus from a biopsychological perspective may be more appropriate than from purely a biomedical model.The present study was aimed at determining the relationship between tinnitus and the problems and life effects experienced by UK-based tinnitus research study volunteers. Open-ended questions were used. Responses were classified using the International Classification of Functioning, Disability and Health (ICF) framework to understand the impact of tinnitus in a multidimensional manner using a biopsychosocial perspective.A cross-sectional survey design was used.Study sample included a sample of 240 adults with tinnitus who were interested in undertaking an Internet-based intervention for tinnitus.The data were collated using two open-ended questions. The first focused on problems related to having tinnitus and the second to life effects as a result of tinnitus. Responses were analyzed using a simplified content analysis approach to link concepts to ICF categories in accordance with established linking rules. A Wilcoxon signed-rank test was performed to compare the number of responses between the two questions.There were 764 responses related to problems identified, 797 responses associated with life effects due to tinnitus, and 37 responses that did not fit into any ICF category. No significant differences were observed in the number of responses between the two questions. In addition, no significant association between the number of responses reported and demographic variables was found. Most of the problems and life effects experienced by tinnitus sufferers were related to body function, followed by activity limitations, and participation restrictions. Only a few responses were related to environmental and personal factors. The most frequent responses related to body function involved “emotional functions” (b152), “sleep functions” (b134), “hearing functions” (b230), “sustaining attention” (b1400), and “energy level” (b1300). For activity limitations and participation restrictions they were “communicating with—receiving—spoken messages” (d310), “socialization” (d9205), “handling stress and other psychological demands” (d240), and “recreation and leisure” (d920). The most frequently occurring responses related to environmental factors were “sound intensity” (e2500), “sound quality” (e2501), and “general products and technology for communication” (e1250). “Coping styles” was the most frequently occurring personal factor.The study highlights the use of open-ended questions in gathering useful information about the impact of tinnitus. The responses coded to ICF show that tinnitus impacts many domains, not only particularly body function, but also activity limitations and participation restrictions. The results demonstrate the heterogeneous nature of the impact of tinnitus on people affected.

scholarly journals The Impact of Place of Residence on the Sense of Coherence of Population Aged 60–89: Evidence from Poland

2022 ◽  
Vol 14 (1) ◽  
pp. 515
Author(s):  
Urszula Michalik-Marcinkowska ◽  
Aleksandra Kiełtyka ◽  
Bartłomiej Buława
Keyword(s):  
Older Adults ◽  
Sense Of Coherence ◽  
Social Assistance ◽  
Health Problems ◽  
Statistical Dependence ◽  
Personal Factors ◽  
Community Sustainability ◽  
Place Of Residence ◽  
Factors Affecting ◽  
The Impact

Place of living is one of the most important socio-demographic factors which characterizes the lives of older people. The importance of with whom and under what conditions older adults live to a large extent determines their health and standard of living. The goal of the study was to find the relationship between the place of residence and housing condition of older adults in Poland and their sense of coherence and health problems. The 29-item Antonovsky SOC questionnaire was used. In the research 303 people (76% women and 24% men) aged 60–89 were evaluated: 158 lived in their own houses/flats, while 145 resided in Daily Homes of Social Assistance (DPS). The overall result for the sense of coherence was 129.65 for older adults living in their own homes and 126.48 for these living in DPS. Statistical dependence between the place of residence and sense of manageability and meaningfulness was found. There is no dependence between gender and the overall score, nor the three components of the sense of coherence. Statistical dependence was determined in the criterion of age. A higher level of meaningfulness was observed in people aged 60–74. Taking into account the place of residents, 52% of the respondents living in their own houses/flats experience loneliness and among the people living in Daily Homes of Social Assistance, 46% experience loneliness. The type of place of residence is one of the most important personal factors affecting the sense of coherence, chronic health problems, and sense of loneliness. The last factor, especially, can adversely affect community sustainability and undermine social cohesion.

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