Content and psychometric evaluations of questionnaires for assessing physical function in people with neck disorders: a systematic review of the literature

Purpose: The purpose was to investigate how physical function is assessed in people with musculoskeletal disorders (MSD) in the neck. Specifically, we aimed to determine: (1) Which questionnaires are used to assess physical function in people with MSD in the neck? (2) What do those questionnaires measure? (3) What are the measurement properties of the questionnaires?

Materials and methods: A systematic review was performed to identify questionnaires and psychometric evaluations. The content of the questionnaires was categorized according to the International Classification of Function, Disability and Health, and the psychometric properties were quality-rated using the COnsensus-based Standards for the selection of health Measurement INstruments checklist.

Results: Ten questionnaires and 32 articles evaluating measurement properties were analyzed. Most questionnaires covered only the components body functions and activity and participation, more often activity participation than body function. Internal consistency was adequate in most questionnaires, whereas responsiveness was generally low. Neck Disability Index was most evaluated, but the evaluations of all questionnaires tended to cover most properties in the checklist.

Conclusions: The questionnaires differed substantially in items and extent to which their psychometric properties had been evaluated. Focus of measurement was on activities in daily life rather than physical function as such.

• Implications for Rehabilitation

• To provide early diagnostics and effective treatment for patients with neck disorders, valid and reliable instruments that measure relevant aspects of the disorders are needed.

• This paper presents an overview of content and quality of questionnaires used to assess physical function in neck disorders, which may facilitate informed decisions about which measurement instruments to use when evaluating the course of neck disorders.

• Most of the questionnaires need more testing to judge the quality, however the NDI was the most frequently tested questionnaire.

• The COnsensus-based Standards for the selection of health Measurement INstruments checklist is a useful tool in relation to psychometric testing of questionnaires, but clear definitions of interpretation of the quality criteria in each study would enhance comparability of results.

     

A comparative review of measurement instruments to inform and evaluate effectiveness of disability inclusive development

Abstract

Purpose: A review of existing measurement instruments was conducted to examine their suitability to measure disability prevalence and assess quality of life, protection of disability rights and community participation by people with disabilities, specifically within the context of development programs in low and middle-income countries. Methods: From a search of PubMed and the grey literature, potentially relevant measurement instruments were identified and examined for their content and psychometric properties, where possible. Criteria for inclusion were: based on the WHO’s International Classification of Functioning Disability and Health (ICF), used quantitative methods, suitable for population-based studies of disability inclusive development in English and published after 1990. Characteristics of existing instruments were analysed according to components of the ICF and quality of life domains. Results: Ten instruments were identified and reviewed according to the criteria listed above. Each version of instruments was analysed separately. Only three instruments included a component on quality of life. Domains from the ICF that were addressed by some but not all instruments included the environment, technology and communication. Conclusion: The measurement instruments reviewed covered the range of elements required to measure disability-inclusion within development contexts. However no single measurement instrument has the capacity to measure both disability prevalence and changes in quality of life according to contemporary disability paradigms. The review of measurement instruments supports the need for developing an instrument specifically intended to measure disability inclusive practice within development programs.

• Implications for Rehabilitation

• Surveys and tools are needed to plan disability inclusive development.

• Existing measurement tools to determine prevalence of disability, wellbeing, rights and access to the community were reviewed.

• No single validated tool exists for population-based studies, uses quantitative methods and the components of the ICF to measure prevalence of disability, well-being of people with disability and their access to their communities.

• A measurement tool that reflects the UNCRPD and addresses all components of the ICF is needed to assist in disability inclusive development, especially in low and mid resource countries.

     

Measurement of activity limitations and participation restrictions: examination of ICF-linked content and scale properties of the FIM and PC-PART instruments

Purpose: To explore the operationalization of activity and participation-related measurement constructs through comparison of item phrasing, item response categories and scoring (scale properties) for two separate instruments targeting activities of daily living.

Method: Personal Care Participation Assessment and Resource Tool (PC-PART) item content was linked to ICF categories using established linking rules. Previously reported ICF-linked FIM content categories and ICF-linked PC-PART content categories were compared to identify common ICF categories between the instruments. Scale properties of both instruments were compared using a patient scenario to explore the instruments’ separate measurement constructs.

Results: The PC-PART and FIM shared 15 of the 53 level two ICF-linked categories identified across both instruments. Examination of the instruments’ scale properties for items with overlapping ICF content, and exploration through a patient scenario, provided supportive evidence that the instruments measure different constructs.

Conclusions: While the PC-PART and FIM share common ICF-linked content, they measure separate constructs. Measurement construct was influenced by the instruments’ scale properties. The FIM was observed to measure activity limitations and the PC-PART measured participation restrictions. Scrutiny of instruments’ scale properties in addition to item content is critical in the operationalization of activity and participation-related measurement constructs.

• Implications for Rehabilitation

• When selecting outcome measures for use in rehabilitation it is necessary to examine both the content of the instruments’ items and item phrasing, response categories and scoring, to clarify the construct being measured.

• Measurement of activity limitations as well as participation restrictions in activities of daily living required for community life provides a more comprehensive measurement of rehabilitation outcomes than measurement of either construct alone.

• To measure the effects of interventions used in rehabilitation, it is necessary to select measures with relevant content and scale properties that enable evaluation of change in the constructs that are expected to change, as a result of the rehabilitation intervention.

     

The cross-cultural equivalence of participation instruments: a systematic review

Purpose: Concepts such as health-related quality of life, disability and participation may differ across cultures. Consequently, when assessing such a concept using a measure developed elsewhere, it is important to test its cultural equivalence. Previous research suggested a lack of cultural equivalence testing in several areas of measurement. This paper reviews the process of cross-cultural equivalence testing of instruments to measure participation in society. Methods: An existing cultural equivalence framework was adapted and used to assess participation instruments on five categories of equivalence: conceptual, item, semantic, measurement and operational equivalence. For each category, several aspects were rated, resulting in an overall category rating of ‘minimal/none’, ‘partial’ or ‘extensive’. The best possible overall study rating was five ‘extensive’ ratings. Articles were included if the instruments focussed explicitly on measuring ‘participation’ and were theoretically grounded in the ICIDH(-2) or ICF. Cross-validation articles were only included if it concerned an adaptation of an instrument developed in a high or middle-income country to a low-income country or vice versa. Results: Eight cross-cultural validation studies were included in which five participation instruments were tested (Impact on Participation and Autonomy, London Handicap Scale, Perceived Impact and Problem Profile, Craig Handicap Assessment Reporting Technique, Participation Scale). Of these eight studies, only three received at least two ‘extensive’ ratings for the different categories of equivalence. The majority of the cultural equivalence ratings given were ‘partial’ and ‘minimal/none’. The majority of the ‘none/minimal’ ratings were given for item and measurement equivalence. Conclusion: The cross-cultural equivalence testing of the participation instruments included leaves much to be desired. A detailed checklist is proposed for designing a cross-validation study. Once a study has been conducted, the checklist can be used to ensure comprehensive reporting of the validation (equivalence) testing process and its results.

Implications for Rehabilitation

• Participation instruments are often used in a different cultural setting than initial developed for.

• The conceptualization of participation may vary across cultures. Therefore, cultural equivalence – the extent to which an instrument is equally suitable for use in two or more cultures – is an important concept to address.

• This review showed that the process of cultural equivalence testing of the included participation instruments was often addressed insufficiently.

• Clinicians should be aware that application of participations instruments in a different culture than initially developed for needs prior testing of cultural validity in the next context.

     

Long-term functional outcome of patients with longitudinal radial deficiency: cross-sectional evaluation of function,activity and participation

Purpose: To evaluate all functional aspects of patients with longitudinal radial dysplasia and to clarify the relationship between body functions on the one hand and limitations in activity and participation on the other hand. Methods: Thirty-one arms of seventeen adult patients with longitudinal radial dysplasia were analysed. Body function was assessed by measuring grip and pinch strength and active range of motion (ROM) of the hand. Activities were measured using the “Sequential Occupational Dexterity Assessment “, to measure perceived restrictions in participation the “Impact on Participation and Autonomy questionnaire” was used. Relationships between severity of dysplasia, body function, participation and activity were determined. Results: Patients with a severe type scored significantly lower in body function scores than patients with a mild form. Patients with limited active finger joint motion performed worse on activities. We found no significant differences in activity and participation between mild or severe types and found no correlation in participation scores. Conclusion: Although considerable restrictions in joint mobility and strength were revealed, little or no limitations on the activity and participation level were found. Limitations in body functions hardly influenced capacity on activity level and did not influence participation in societal roles.

Implications for Rehabilitation

• People with LRD learn to accomplish many of the everyday tasks without great difficulty and do not report a low quality of participation in major life activities.

• Professionals working in rehabilitation medicine should focus on activity and participation rather than on body structure or functions. Therapy focused solely on increasing joint motion or strength does not lead to further improvement.

• For parents it will be reassuring to know that children with severe radial deficiencies can satisfactory fulfill social roles in later life.

     

Utility of the Community Integration Questionnaire in a sample of adults with neurological and neuropsychiatric disorders receiving prevocational training

Purpose: To investigate utility of the Community Integration Questionnaire (CIQ) in a mixed sample of adults with neurological and neuropsychiatric disorders. Method: Cross-sectional, interview-based study. Participants were community-dwelling adults with disabilities resulting from neurological and neuropsychiatric disorders (N?=?54), who participated in a pre-vocational readiness and social skills training program. Psychometric properties of the Community Integration Questionnaire (CIQ) were assessed and validated against Mayo-Portland Adaptability Inventory (MPAI) and The Problem Checklist from the New York University Head Injury Family Interview (PCL). Results: Based on the revised scoring procedures, psychometric properties of the CIQ Home Competency scale were excellent, followed by the Total score and Social Integration scale. Productive Activity scale had low content validity and a weak association with the total score. Convergent and discriminant validity of the CIQ were demonstrated by correlation patterns with MPAI scales in the expected direction. Significant relationship was found with PCL Physical/Dependency scale. Significant associations were found with sex, living status, and record of subsequent employment. Conclusions: The results provide support for the use of the CIQ as a measure of participation in individuals with neurological and neuropsychiatric diagnoses and resulting disabilities.

• Implications for Rehabilitation

• An important goal of rehabilitation and training programs for individuals with dysfunction of the central nervous system is to promote their participation in social, vocational, and domestic activities.

• The Community Integration Questionnaire (CIQ) is a brief and efficient instrument for measuring these participation domains.

• This study demonstrated good psychometric properties and high utility of the CIQ in a sample of 54 individuals participating in a prevocational training program.

     

Conceptual issues in the measurement of participation among wheeled mobility device users

Purpose. To review current measurement approaches to activity and participation among wheeled mobility users and suggest key factors researchers should consider as they continue to develop and refine both the concept of participation and its measurement.

Methods. Literature review and expert opinion.

Results. Four issues are reviewed:

1. Participation as a concept and as a key domain of the revised International Classification of Functioning, Disability and Health (ICF).

2. The ‘perspective’ of current participation self-reports as they reflect the underlying cultural values of autonomy and independence.

3. The lack of sensitivity in current participation measures to assistive technology.

4. The significance of the ICF qualifiers ‘capacity’ and ‘performance’ to the accurate assessment of activity and participation among wheeled mobility users.

Conclusions. The following suggestions are offered as researchers continue to develop increasingly sophisticated instruments and methods: (1) participation measures need to be device-specific; (2) measures ought to capture both ‘capacity’ and ‘performance’; (3) methods need to be sensitive to those factors that impact mobility device use over time; (4) methods need to be sensitive to the complexities of both the social and physical environment as they impact device use; and (5) measures need to reflect the impact of multiple mobility device use.     

The extremity function index (EFI), a disability severity measure for neuromuscular diseases: psychometric evaluation

Objective: To adapt and to combine the self-report Upper Extremity Functional Index and Lower Extremity Function Scale, for the assessment of disability severity in patients with a neuromuscular disease and to examine its psychometric properties in order to make it suitable for indicating disease severity in neuromuscular diseases.

Design: A cross-sectional postal survey study was performed among patients diagnosed with a neuromuscular disease.

Methods: Patients completed both adapted extremity function scales, questionnaires for psychometric evaluation, and disease-specific questions. Confirmatory factor analysis was performed, and reliability and validity were examined.

Results: Response rate was 70% (n?=?702). The Extremity Function Index model with a two-factor structure – for upper and lower extremities – showed an acceptable fit. The Extremity Function Index scales showed good internal consistency (alphas: 0.97–0.98). The known-groups validity test confirmed that Extremity Function Index scales discriminate between categories of “Extent of limitations” and “Quality of Life.” Convergent and divergent validity tests confirmed that Extremity Function Index scales measure the physical impact of neuromuscular diseases. Relative validity tests showed that the Extremity Function Index scales performed well in discriminating between subgroups of patients with increasing “Extent of limitations” compared to concurrent measurement instruments.

Conclusion: The Extremity Function Index proved to be a sound and easy to apply self-report disability severity measurement instrument in neuromuscular diseases.

• Implications for rehabilitation

• The Extremity Function Index reflects the functioning of all muscles in the upper and lower extremities involved in activities of daily living.

• The Extremity Function Index is an easy to administer and patient-friendly disability severity measurement instrument that has the ability to evaluate differences in disability severity between relevant neuromuscular disease subgroups.

• The Extremity Function Index is a valid and reliable disability severity measurement instrument for neuromuscular diseases.

     

Assessment of spasticity after stroke using clinical measures: a systematic review

Abstract

Purpose: To identify and appraise the literature on clinical measures of spasticity that has been investigated in people after stroke. Methods: The literature search involved four databases (PubMed, CINAHL, Embase and The Cochrane Library) up to February 2014. The selected studies included those that aimed to measure spasticity using a clinical assessment tool among adult patients post-stroke. Two independent raters reviewed the included articles using a critical appraisal scale and a structured data extraction form. Results: A total of 40 studies examining 15 spasticity assessment tools in patients post-stroke were reviewed. None of the reviewed measurement tools demonstrated satisfactory results for all psychometric properties evaluated, and the majority lacked evidence concerning validity and absolute reliability. Conclusion: This systematic review found limited evidence to support the use of most of clinical measures of spasticity for people post-stroke. Future research examining the application and psychometric properties of these measures is warranted.

• Implications for Rehabilitation

• There is a need for objective clinical tools for measuring spasticity that are clinically feasible and easily interpreted by clinicians.

• This review identified various clinical measures of spasticity that have been investigated in people after stroke.

• Insufficient evidence of psychometric properties precludes recommending one tool over the others.

• Future research should focus on investigating the psychometric properties of clinical measures of spasticity.

     

The reliability and validity of the World Health Organization Disability Assessment Schedule (WHODAS-II) in stroke

Purpose: Psychometric properties of the World Health Organization Disability Assessment Schedule (WHODAS-II) in stroke have received some attention recently, mostly using classical approaches, but there is still an absence of investigation from a modern psychometric perspective. This study aimed to test the reliability and validity of the WHODAS-II in stroke, using modern psychometric analysis. Methods: A total of 188 community-dwelling poststroke patients were recruited. Internal construct validity was assessed by Rasch analysis, reliability by internal consistency and person separation index (PSI), and external construct validity by associations with Functional Independence Measure (FIM^?). Results: Rasch analysis indicated that total score (based upon 32 items, omitting the work-related items) was satisfactory, after adjustment for local dependency. The proposed “activities” and “participation” components also satisfied Rasch model expectations. An existing short form was problematic due to inclusion of a work-related item, but an alternative 10-item version was acceptable. Cronbach’s α for the WHODAS-II, its domains and components varied between 0.83 and 0.99 and PSI between 0.70 and 0.95. External construct validity was confirmed by expected correlations with FIM^?. Conclusions: WHODAS-II provides a reliable and valid instrument for measuring disability and components of “activities” and “participation” in stroke survivors. Various combinations of the item set may provide a range of scales to suit most research needs.

Implications for Rehabilitation

• The impact of stroke on patients’ functioning in terms of activities and participation is important in the postacute and long-term rehabilitation phase.

• The World Health Organization Disability Assessment Schedule (WHODAS-II) was developed specifically to measure activities and participation.

• Psychometric properties of the WHODAS-II in stroke have received some attention recently, mostly using classical approaches.

• This study has tested the reliability and validity of the WHODAS-II in stroke, using modern psychometric analysis and it has been found that WHODAS-II provides a reliable and valid instrument for measuring functioning and components of “activities” and “participation” in stroke survivors.

     

Health disparities among workers and nonworkers with functional limitations: implications for improving employment in the United States

Purpose: The aim of this study was to compare workers and nonworkers who reported mild, moderate, and severe/complete functional limitations to identify disparities in 19 health and social indicators. Method: Using the International Classification of Functioning, Disability and Health as our conceptual framework, we analyzed data from the combined 2000–2008 National Health Interview Survey, comparing workers and nonworkers by severity of functional limitations, as measured by the FL12 Scale of Functional Limitation Severity. Results: Only 9.5% of people reporting moderate/severe functional limitations worked. Although not without exception, not working and severity of functional limitation were associated with poorer health outcomes, with nonworkers reporting severe/complete limitations having least optimal health. Prevalence of chronic conditions was associated with level of functional limitation severity, with the strongest associations among nonworkers. Conclusions: By focusing exclusively on people with functional limitations, we were better able to examine factors contributing to health and participation of workers and nonworkers. People who worked and had moderate or severe/complete limitations often did so while reporting poor health. With improved access to health care, health promotion activities, and other support systems, the quality of life and likelihood of work participation of people with greater functional limitations might also be improved.

Implications for Rehabilitation

• Improving access to health care, health promotion activities, and other support systems may increase the quality of life and likelihood of work participation of people with moderate or severe/complete limitations.

• Specifically addressing health behaviors among workers and nonworkers with moderate and severe/complete functional limitations in the course of rehabilitation may improve both work participation and job retention.

• Workers and nonworkers with mild, moderate, and severe/complete activity limitations exhibit different patterns of health and participation requiring carefully crafted intervention strategies

• Consistent management of chronic health conditions and chronic pain may improve the likelihood of work participation and retention in the workforce among adults with moderate and severe/complete functional limitations.

     

Participation-based environment accessibility assessment tool (P-BEAAT) in the Zambian context

Purpose: The purpose of this study was to describe the preliminary development and validation of a potential measure for assessing the accessibility of the built environment in Zambia. It was designed to identify environmental features that present barriers to participation for people with mobility limitations (PWML) using mobility devices such as wheelchairs or crutches.Method: The Participation-Based Environment Accessibility Assessment Tool (P-BEAAT) was developed through focus group discussions and personal interviews with 88 PWML from five provinces of Zambia regarding the accessibility of their built environment. The content validity of the P-BEAAT checklist was accomplished through three phases of development with data gathered from 11 focus groups and nine personal interviews. Results: Participants described accessibility barriers which affect their participation in daily life. This information generated the P-BEAAT with 66 items describing eight environmental features with potential for identifying environmental barriers. The P-BEAAT has shown good homogeneity with Cronbach’s α score of 0.91. Conclusion: The P-BEAAT was constructed grounded in the reality of people’s experiences in Zambia for use in assessing environmental features important in the participation of daily life of PWML pertinent to developing countries. Further clinimetric testing of the properties of the P-BEAAT to establish reliability should be conducted next.

Implications for Rehabilitation

• Identification of barriers in the built environment is a critical element in the process of eliminating obstacles to participation by people with mobility limitations.

• Accessible built environment facilitates the enhancement of participation of people with mobility limitations.

• The process of identifying obstacles requires audit/assessment tools to evaluate and measure the presence or absence of barriers to accessibility of the built environment.

• This study shows that the Participation-Based Environment Accessibility Assessment Tool provides a preliminary checklist to be used in identifying environmental barriers in the process of promoting lifelong participation for people with mobility limitations using wheelchairs or crutches in Zambia.

     

Effects of a multidisciplinary group rehabilitation programme on participation of the visually impaired elderly: a pilot study

Purpose: To pilot test the newly developed multidisciplinary group rehabilitation programme Visually Impaired elderly Persons Participating (VIPP). Method: A single group pretest–posttest design pilot study included 29 visually impaired persons (≥55 years). The intervention (20 weekly meetings) consisted of four components (practical training; education, social interaction, counselling and training of problem-solving skills; individual and group goal setting; home-based exercise programme). Participation was assessed with the Utrecht Scale for Evaluation of Rehabilitation–Participation (USER-P) and the Impact on Participation and Autonomy (IPA) questionnaire at baseline, immediately and 6 months after the intervention. Results: At scale level, no statistical significant changes over time were found whereas the effect size indicated small effects for restrictions and satisfaction with participation, and a medium effect for autonomy outdoors. At item level, improvements tended to occur in frequency of housekeeping, in restrictions in housekeeping and outdoor activities and in satisfaction with the partner relationship. Satisfaction with leisure indoors and autonomy regarding using leisure time tended to increase as well. Conclusions: The tentative conclusion of this small-scale pilot study is that the VIPP programme modestly benefits perceived restrictions in participation, satisfaction with participation and autonomy outdoors of the visually impaired elderly. These preliminary findings warrant further investigation.

Implications for Rehabilitation

• Visually impaired elderly persons perceive restrictions in participation and participate less in society compared to peers.

• Since participation contributes to quality of life and well-being, it is important that visually impaired elderly persons maintain or enhance their level of participation in society.

• This pilot study showed that the multidisciplinary group rehabilitation programme Visually Impaired elderly Persons Participating (VIPP) modestly benefits perceived restrictions in participation, satisfaction with participation and autonomy outdoors of the visually impaired elderly.

     

Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition characterized by a number of symptoms which typically worsen following minimal exertion. Various strategies to manage the limited energy levels have been proposed. Of these, pacing has been consistently rated as one of the most helpful in surveys conducted by patient groups. This review is a response to the paucity of the information on pacing in the scientific literature. Method: We describe the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy. Results: Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise. Conclusion: Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.

Implications for Rehabilitation

• Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology.

• Pacing is appropriate for those who operating near or at their maximum level of functioning, and for individuals with neurological and immunological abnormalities.

• Pacing may be offered as part of an individualized, multi-component management programme.

     

Test–retest reliability and responsiveness of a French Canadian Upper Limb Functional Index (ULFI-FC)

Abstract

Purpose: The Upper Limb Functional Index (ULFI) is a self-report questionnaire assessing activity limitations and participation restrictions resulting from an upper limb musculoskeletal disorder (MSD). A French Canadian version of the ULFI (ULFI-FC) has recently demonstrated good internal consistency, and convergent validity, as well as clinical applicability in a rehabilitation context where clinicians have important time constraints. This study aimed to examine the test–retest reliability and responsiveness of the ULFI-FC. Methods: In order to study the ULFI-FC’s responsiveness, 60 participants completed the ULFI-FC and a French Canadian version of the DASH (DASH-FC) twice at an interval of two to six weeks, based on the evolution of their upper limb MSD. Half of the sample also completed the ULFI-FC three days after the second assessment for the test–retest reliability analysis. Results: The ULFI-FC demonstrated high test–retest reliability (ICC?=?0.92–0.97) and good internal responsiveness (Cohen’s d?=?0.49–0.62; standardized responsive means?=?0.60–0.88). External responsiveness was further supported by moderate correlations of change scores with the DASH-FC (r?=?0.42–0.64). Conclusions: Study findings support the use of the ULFI-FC in rehabilitation as an outcome measure to monitor activity limitations and participation restrictions among French-speaking patients presenting with upper limb MSD.

• Implications for Rehabilitation

• The ULFI-FC is a reliable and valid tool with good responsiveness to change for assessing activity limitations and participation restrictions in adults presenting with upper limb musculoskeletal disorders.

• This tool can thus be useful in clinical and research settings.

• By exploring meaningful activities that are affected by patients' upper limb musculoskeletal disorders, the tool's Patient Specific Index is particularly relevant for clinicians adhering to a patient-centered approach.

     

Development of the MG-DIS: an ICF-based disability assessment instrument for myasthenia gravis

Abstract

Purpose: To develop a preliminary version of a disease-specific, patient-reported disability assessment instrument for myasthenia gravis (MG) based on the International Classification of Functioning, Disability and Health (ICF): the MG-DIS. Methods: Five consecutive steps were taken: literature review and selection of outcome measures; linking of measures’ concepts to ICF categories and selection of those reported by 30% of the instruments; comparison of linking results with a previous selection of MG-relevant ICF categories; patient interview; development of questions based on retained ICF categories. Results: Thirty-one papers containing 21 different outcome measures were found: 13 ICF categories were linked to them. Fifty-five items were retained after the comparison with the list of MG-specific categories, and were used for patient interview. Thirteen interviews were conducted before saturation of data was reached and the final list was composed of 42 categories: based upon them, 44 questions were developed. Conclusions: The preliminary version of the MG-DIS contains more information than each single MG-specific tool, in particular, for the component of environmental factors. Further research is needed to test its psychometric properties.

• Implications for Rehabilitation

• It is important that patient-reported outcome is incorporated in MG patient’s assessment.

• MG features can be evaluated with ICF-based methods.

• An MG-specific patient-reported disability assessment instrument can be used to monitor changes of functioning in patients on MG-specific treatments, and can be used in clinical trials as outcome measure.

     

Upper limb function and activity in people with facioscapulohumeral muscular dystrophy: a web-based survey

Purpose To investigate the upper extremity (UE) at the level of impairments and related activity limitations and participation restrictions in people with facioscapulohumeral muscular dystrophy (FSHD). Methods The study was conducted using web-based questionnaires that were distributed amongst people with FSHD in the Netherlands. Eighty-eight respondents started the survey, and 71 completed it. The questionnaires covered the following dimensions: Function, Activity and Participation of the International Classification of Functioning Disability and Health. Results More than 40% of the respondents experienced pain in one arm or both the arms. Increased pain and stiffness scores and longer disease duration were associated with increased limitation scores. For basic activities, lifting the arm above shoulder-level was most frequently reported as most limited, coherent with the clinical picture of FSHD. Among the respondents, 50% indicated restrictions at school, 78% indicated restrictions at work and more than 80% indicated restrictions whilst participating in sports, hobbies, household activities and romantic relationships. Conclusions This study has shown that alongside the well-known problem of lifting the arms above shoulder-level, UE activities below shoulder height during vocational and occupational activities are also problematic in patients with FSHD. Alongside disease duration, pain and stiffness are associated with UE activity limitations.

• Implications for Rehabilitation

• Attention is needed for pain and experienced stiffness in the upper extremity as it is frequently present in patients with FSHD.

• Rehabilitation professionals need to be aware that patients with FSHD not only experience problems with activities above shoulder height, but also with activities below shoulder height.

• At least 50% of the patients with FSHD experience restrictions in participation as a result of limitations in their UE.

     

The construct validity of the Dutch version of the activity card sort

Purpose: Establishing construct validity of the ACS-NL in individuals with Parkinson’s disease (PD).

Method: Discriminative validity was established in 191 community-dwelling individuals with PD using an extreme groups design (Hoehn and Yahr stages 1 and 3). Convergent validity was determined by relating the performance scores of the ACS-NL to the scores of the Canadian Occupational Performance Measure (COPM) and the Parkinson’s Disease Questionnaire (PDQ-39) scores, and relating ACS-NL satisfaction scores to the COPM scores and to the Utrecht Scale for Evaluation of Rehabilitation Participation (USER-P).

Results: The ACS-NL discriminated between individuals with PD with H&;Y stages 1 and 3 (U?=?524.5, Z?=??5.453). ACS-NL performance scores correlated weakly with COPM scores (r?=?(0).19) and moderately with PDQ-39 scores (r?=?0.44–0.55). The ACS-NL satisfaction scores correlated weakly with COPM scores (r?= 0.23), and moderately with USER-P scores (r?≥?0.40).

Conclusions: This study contributed to the validation of the ACS-NL. The assessment enhances the possibility of monitoring participation in activities in individuals with PD.

• Implications for Rehabilitation

• The ACS-NL appears to hold good potential for use in the assessment of participation in activities in individuals with PD.

• The ACS-NL has added value parallel to administration of other instruments measuring participation (COPM) and quality of life (PDQ-39).

• This study demonstrates the capacity of the ACS to measure a unique construct of participation and helps to improve the psychometric properties and administration of the ACS-NL in practice.