He/She/They - gender inclusivity in developing and using health-related questionnaires: a scoping review.

PURPOSE: To ensure the recognition and participation of all potential respondents in health research, surveys and care, including LGBTQIA + broadly, and trans people, specifically, the use of inclusive language should be considered. This scoping review aimed to identify and describe strategies considered for gender inclusivity in development and use of health questionnaires and Patient Reported Outcomes Measures (PROMs). METHODS: A systematic search of peer reviewed publications between January 2000 and September 2022 was conducted in Scopus, ProQuest Central, Ovid Medline (PubMed and EBSCO). Two reviewers independently screened identified publications titles and abstracts, followed by full text screening and data extraction from eligible articles. RESULTS: The search of over 5000 publications, retained 18; most acknowledged gaps in representation and advocated for gender-inclusive language. Eight articles discussed exclusion from health care and health research for gender minority groups due to the use of gendered language. Improved reliability, validity and response rates were associated with the use of gender-neutral language in seven articles. Only one article reported finding irritation among cisgender males when non-binary gender response options were used. One paper, focussing on instruments for Rheumatoid Arthritis, discussed gaps in representation if diverse gender identities were not considered when developing PROMs. CONCLUSION: This scoping review points to the importance of adopting gender-inclusive language in health questionnaires and surveys to reduce the risk of excluding gender minority groups. Despite finding very few specific examples of how others have used gender-inclusive language in health questionnaires, many strengths of gender-inclusive language usage were identified.

People from the LGBTQIA + communities are often excluded from health research and from completing heath surveys as they are not able to identify with the questions about male or female genders. This scoping review aimed to examine the literature for any strategies developers of health questionnaires may have come up with to ensure inclusion of all demographic groups. Most of the identified literature highlights the importance of adopting gender-inclusive language in health questionnaires to reduce the risk of excluding gender minority groups. Despite many strengths of gender-inclusive language usage being identified, only a few specific examples were identified of how others have used gender-inclusive language in health questionnaires.

Let's talk about it: an exploration of the comparative use of three different digital platforms to gather patient-reported outcome measures.

BACKGROUND: Patient-reported outcome (PRO) measures provide valuable evidence in clinical trials; however, poor compliance with PRO measures is a notable and long-standing problem, resulting in missing data that potentially impact the interpretation of trial results. Interactive, patient-centric platforms may increase participants' motivation to complete PRO measures over the course of a clinical trial. Thus, the aim of this study was to evaluate and optimize the usability of 3 popular consumer technologies-a traditional app-based interface, a chatbot interface, and a speech-operated interface-that may be used to improve user engagement and compliance with PRO measures. METHODS: Participants aged 18-75 years from the general United States population tested the usability of 3 ePRO platforms: a traditional app-based interface using Datacubed Health Platform (Datacubed), a web-based chatbot interface using the Orbita platform, and a speech-operated Alexa interface using an Alexa Skill called "My Daily Wellness." The usability of these platforms was tested with 2 PRO measures: the EQ-5D-5 L and the SF-12v2 Health Survey (SF-12v2), Daily recall. Using a crossover design, 3 cohorts of participants tested each ePRO platform daily for 1 week. After testing, interviews were conducted regarding the participants' experience with each platform. RESULTS: A total of 24 adults participated in the study. The mean age of participants was 45 years (range, 21-71 years), and half were female (n = 12; 50%). Overall, participants prioritized speed, ease of use, and device portability in selecting their preferred platform. The Datacubed app met these criteria and was the preferred platform among most participants (n = 20; 83%). Participants also suggested various modifications to the platforms, such as programmable notifications, adjustable speed, and additional daily reminders. CONCLUSIONS: These data demonstrate the importance of speed, ease of use, and device portability, features that are currently incorporated in the Datacubed app, in ePRO platforms used in future clinical trials. Additionally, the usability of ePRO platforms may be optimized by adding programmable notifications, adjustable speed, and increased daily reminders. The results of this study may be used to enhance the usability and patient centricity of these platforms to improve user compliance and engagement during clinical trials.

Cross-Cultural Adaptation of the Beta EQ-5D-Y-5L Into Chichewa (Malawi).

OBJECTIVES: The EuroQol Group is developing a new EQ-5D-Y-5L version with 5 severity levels for each of the 5 dimensions. The 5 severity levels describe different health severities and there is a potential for severity level inversion. This article aims to report the process of cross-cultural adaptation of the beta EQ-5D-Y-5L into Chichewa (Malawi) using the card ranking exercise, which has been added to the EQ-5D-Y-5L translation protocol. METHODS: To assess the correct hierarchical ordering of severity levels, the adaptation followed the EQ-5D-Y-5L translation protocol. Cognitive interviews were undertaken to establish conceptual equivalence. Thereafter, 4 iterations of ranking exercises were conducted, leading to amendments of the translated Chichewa version to arrive at a final version. RESULTS: The iterations were assessed by 18 participants aged 8 to 14 years. Health proved to be a difficult concept to translate as was "discomfort." Cognitive interviews identified further conceptual issues, particularly with the "looking after myself" dimension. Considerations about lack of soap or water indicated that some children did not fully comprehend this dimension as being about the ability to wash and dress themselves. The iterative card ranking exercise detected severity level inversion between "a little bit" and "some," and between "a lot" and "extreme" and alternative Chichewa words/phrases were then tested. Ultimately, the intended hierarchical severity ranking was achieved and an acceptable Chichewa version was produced. CONCLUSIONS: Conceptual and linguistic equivalence to the English EQ-5D-Y-5L was established for the Chichewa EQ-5D-Y-5L version. The card ranking exercise was instrumental in correcting severity level inversion and supporting the comprehensible translation.

Performance of the Toddler and Infant (TANDI) Health-Related Quality of Life Instrument in 3-4-Year-Old Children.

The Toddler and Infant (TANDI) dimensions of Health-Related Quality of Life assess 'age appropriate' behaviour and measurement could be extended to older children. A sample of 203 children 3-4 years of age was recruited, and their caregivers completed the TANDI, Pediatric Quality of Life Inventory (PedsQL) and EQ-5D-Y Proxy. Spearman and Pearson's correlation coefficients, and Kruskal-Wallis H-test were used to explore the feasibility, known-group validity, discriminate validity and concurrent validity of the TANDI. Children with a health condition (n = 142) had a lower ceiling effect (p = 0.010) and more unique health profiles (p < 0.001) than the healthy group (n = 61). The TANDI discriminated between those with and without a health condition. In children with a health condition, the TANDI discriminated between clinician rated severity of the health condition. The TANDI had moderate to strong correlations with similar PedsQL and EQ-5D-Y items and scores. The TANDI is valid for children aged 3-4 years and is recommended for children with a health condition, whereas the PedsQL may be better for healthy children. The TANDI is recommended for studies with young children whereas the EQ-5D-Y Proxy is recommended for a sample including older children or for longitudinal studies with preschoolers. Further work on the TANDI is recommended to establish test-retest reliability and responsiveness.

Effect of the FIFA 11+ soccer specific warm up programme on the incidence of injuries: A cluster-randomised controlled trial.

BACKGROUND: Soccer players incur injuries that typically affect their performance. Injuries are caused by intrinsic and extrinsic factors that call for multifactorial preventive interventions. The study examines the impact of the FIFA 11+ warm up programme on the incidence and severity of injuries in second division soccer players in Rwanda. METHODS: Twelve teams (309 players) were randomised in the intervention group and 12 teams (317 players) in the control group using a cluster randomized controlled trial with teams as the unit of randomization. Intervention group teams implemented the FIFA 11+ soccer specific warm-up programme during training and matches at least three times a week over seven months of the Rwandan soccer season. Control group teams continued with usual warm up exercises. The primary outcome of this study was the overall incidence of training and match injuries. Injuries, training and match exposure as well as severity categories were recorded per the F-MARC guidelines. RESULTS: A lower proportion of players sustained injuries in the intervention group (52%) compared to the control group (63%) (Odd ratio: 0.7; 95%CI: 0.5-0.9). A significantly lower rate ratio was observed in the intervention group for overall (RR = 0.6; 95%CI: 0.5-0.8) and match (RR = 0.6; 95%CI: 0.5-0.8) injuries. Compliance to the injury prevention programme was 77%. In the intervention group, the incidence of injury was similar across all teams and across the medium and highly compliant teams. There was a statistically significant 55% and 71% reduction of the rate of moderate and severe injuries in the intervention group respectively. CONCLUSION: The 11+ warm up injury prevention programme resulted in a significant reduction in the odds of sustaining injuries. In addition, injuries sustained were less severe. The programme should be rolled out to all teams in Rwanda and may well result in a decrease in the incidence and severity of injury in similar contexts. TRIAL REGISTRATION: Pan African Clinical Trial Registry (PACTR201505001045388).

A New Approach to Assessing Children's Interpretation of Severity Qualifiers in a Multi-Attribute Utility Instrument-The EQ-5D-Y-5L: Development and Testing.

INTRODUCTION: The beta EQ-5D-Y-5L is a new patient-reported outcome measure (PROM) for children aged 8-15 years that is currently under development by the EuroQol Group. The EQ-5D-Y-5L is similar to the EQ-5D-Y but has five levels of severity per dimension rather than three. The increased number of levels increases the granularity of the responses but possibly has also increased the difficulty of distinguishing between levels. The EuroQoL's Version Management Committee (VMC) required a robust method to determine how well children distinguish between the five EQ-5D-Y-5L ordinal severity qualifiers (i.e. 'no problems' through to 'extreme problems'), which are a critical aspect of both health measurement and the valuation of health states. OBJECTIVE: This paper describes the development, testing, selection, and piloting of such a method. METHODS: Following a literature review and consultation with the wider VMC and a Language Support Services agency, a range of exercises were developed to assess the ordering and comprehension of the five severity qualifiers. Three exercises were pre-tested with children in Spain and New Zealand. One exercise, preferred and understood by children, was then piloted. RESULTS: Five children in Spain and 11 in New Zealand tested the three exercises. In both countries, all children found the three exercises easy to understand and complete. Of the 12 children who expressed a preference, nine said they preferred the card ranking. Card ranking also allowed the interviewer to observe difficult choices being made as the children physically rearranged the card order until they settled on their final order. Following rigorous assessment of translatability and cultural portability by an independent Language Support Service, card ranking was piloted in South Africa (n = 9) and in Indonesia (n = 10), where it highlighted severity qualifier order inversions that would otherwise not have been detected. CONCLUSION: The card ranking exercise was found to be a preferred and acceptable means of testing the ordering of translations of severity qualifiers among children. Additional formal testing of the exercise in other countries and languages is now underway. The approach developed and tested by the VMC for cognitive debriefing of beta EQ-5D-Y-5L language/country versions may also be useful in determining the adequacy of translated qualifiers in debriefing of adult EQ-5D-5L versions and other PROMs.

The impact of a training programme incorporating the conceptual framework of the International Classification of Functioning (ICF) on knowledge and attitudes regarding interprofessional practice in Rwandan health professionals: a cluster randomized control trial.

BACKGROUND: The first step in improving interprofessional teamwork entails training health professionals (HP) to acknowledge the role and value the contribution of each member of the team. The International Classification of Functioning, Disability and Health (ICF) has been developed by WHO to provide a common language to facilitate communication between HPs. OBJECTIVE: To determine whether ICF training programme would result in improved knowledge and attitudes regarding interprofessional practice within Rwandan district hospitals. DESIGN, SETTING AND PARTICIPANTS: A cluster randomised, single blinded, control trial design was used to select four district hospitals. Participants included physicians, social workers, physiotherapists, nutritionists, clinical psychologists/mental health nurses. INTERVENTION: Health professionals either received one day's training in interprofessional practice (IPP) based on the ICF (experimental group) as a collaborative framework or a short talk on the topic (control group). OUTCOME MEASURES: Validated questionnaires were used to explore changes in knowledge and attitudes. Ethical approval was obtained from the relevant authorities. RESULTS: There were 103 participants in the experimental and 100 in the control group. There was no significant difference between Knowledge and Attitude scales at baseline. Post-intervention the experimental group (mean = 41.3, SD = 9.5) scored significantly higher on the knowledge scale than the control group (mean = 17.7, SD = 4.7 (t = 22.5; p < .001)). The median scores on the Attitude Scale improved in the Experimental group from 77.8 to 91.1%, whereas the median scores of the control remained approximately 80% (Adjusted Z = 10.72p < .001). CONCLUSION: The ICF proved to be a useful framework for structuring the training of all HPs in IPP and the training resulted in a significant improvement in knowledge and attitudes regarding IPP. As suggested by the HPs, more training and refresher courses were needed for sustainability and the training should be extended to other hospitals in Rwanda. It is thus recommended that the framework can be used in interprofessional education and practice in Rwanda and possibly in other similar countries. TRIAL REGISTRATION: Name of the registry: Pan African Clinical Trial Registry. TRIAL REGISTRATION NUMBER: PACTR201604001185358 . Date of registration: 22/04/2016. URL of trial registry record: www.pactr.org.

Validity and reliability testing of the Toddler and Infant (TANDI) Health Related Quality of Life instrument for very young children.

BACKGROUND: Despite the high burden of disease in younger children there are few tools specifically designed to estimate Health Related Quality of Life (HRQoL) in children younger than 3 years of age. A previous paper described the process of identifying a pool of items which might be suitable for measuring HRQoL of children aged 0-3 years. The current paper describes how the items were pruned and the final draft of the measure, Toddler and Infant (TANDI) Health Related Quality of Life, was tested for validity and reliability. METHODS: A sample of 187 caregivers of children 1-36 months of age were recruited which included children who were either acutely ill (AI), chronically ill (CI) or from the general school going population (GP). The TANDI, an experimental version of the EQ-5D-Y proxy, included six dimensions with three levels of report and general health measured on a Visual Analogue Scale (VAS) from 0 to 100. The content validity had been established during the development of the instrument. The TANDI, Ages and Stages Questionnaire (ASQ), Faces, Leg, Activity, Cry, Consolabilty (FLACC) or Neonatal Infant Pain Scale (NIPS) and a self-designed dietary information questionnaire were administered at baseline. The TANDI was administered 1 week later in GP children to establish test-retest reliability. The distribution of dimension scores, Cronbach's alpha, rotated varimax factor analysis, Spearman's Rho Correlation, the intraclass correlation coefficient, Pearson's correlation, analysis of variance and regression analysis were used to explore the reliability, and validity of the TANDI. RESULTS: Concurrent validity of the different dimensions was tested between the TANDI and other instruments. The Spearman's Rho coefficients were significant and moderate to strong for dimensions of activity and participation and significant and weak for items of body functions. Known groups were compared and children with acute illness had the lowest ranked VAS (median 60, range 0-100), indicating worse HRQoL. The six dimensions of the TANDI were tested for internal consistency and reliability and the Cronbach's α as 0.83. Test-retest results showed no variance for dimension scores of movement and play, and high agreement for pain (83%), relationships (87%), communication (83%) and eating (74%). The scores were highly correlated for the VAS (ICC = 0.76; p < 0.001). CONCLUSION: The TANDI was found to be valid and reliable for use with children aged 1-36 months in South Africa. It is recommended that the TANDI be included in future research to further investigate HRQoL and the impact of interventions in this vulnerable age group. It is further recommended that future testing be done to assess the feasibility, clinical utility, and cross-cultural validity of the measure and to include international input in further development.

How does the EQ-5D-Y Proxy version 1 perform in 3, 4 and 5-year-old children?

BACKGROUND: The EQ-5D-Y Proxy is currently recommended for Health Related Quality of Life (HRQoL) measurement in children aged 4-8 years of age. However, it has only been validated in children over six years of age. The aim of this study was to investigate the performance of the EQ-5D-Y proxy version 1 in children between the ages of 3-6 years. METHODS: A sample of 328 children between 3 and 6 years of age were recruited which included children who were either acutely-ill (AI), chronically-ill (CI) or from the general school going population (GP). The EQ-5D-Y Proxy Version 1 and the PedsQL questionnaires were administered at baseline. The EQ-5D-Y Proxy was administered telephonically 24 h later to children with chronic illnesses to establish test-retest reliability. The distribution of dimensions and summary scores, Cohen's kappa, the intraclass correlation coefficient, Pearson's correlation and Analysis of variance were used to explore the reliability, and validity of the EQ-5D-Y for each age group. A single index score was estimated using Latent scores and Adult EQ-5D-3 L values (Dolan). RESULTS: The groups included 3-year olds (n = 105), 4-year olds (n = 98) and 5-years olds (n = 118). The dimension Looking after Myself had the greatest variability between age groups and had the highest rate of problems reported. Worried, Sad or Unhappy and Pain or Discomfort were not stable across time in test-retest analysis. The Visual Analogue Scale (VAS), and single index scores estimated using the latent values and Dolan tariff had good test retest (except for the latent value scores in a small number of 4-year olds). EQ-5D-Y scores for all ages had small to moderate correlations with PedsQL total score. The EQ-5D-Y discriminated well between children with a health condition and the general population for all age groups. Caregivers reported difficulty completing the Looking after Myself dimension due to age-related difficulties with washing and dressing. CONCLUSION: The dimension of Looking after Myself is problematic for these young children but most notably so in the 3 year old group. If one considers the summary scores of the EQ-5D-Y Proxy version 1 it appears to work well. Known group validity was demonstrated. Concurrent validity was demonstrated on a composite level but not for individual dimensions of Usual Activities or Worried, Sad or Unhappy.. The observable dimensions demonstrated stability over time, with the inferred dimensions (Pain or Discomfort and Worried, Sad or Unhappy) less so, which is to be expected. Further work is needed in exploring either the adaptation of the dimensions in the younger age groups.

The impact of a training programme incorporating the conceptual framework of the International Classification of Functioning (ICF) on behaviour regarding interprofessional practice in Rwandan health professionals: A cluster randomized control trial.

BACKGROUND: Appropriate collaboration between health professionals (HP) can reduce medical errors, enhance the spread of critical information, and assist in interpretation of health information resulting in improved patient care. The International Classification of Functioning, Disability and Health (ICF) may provide a useful conceptual framework to facilitate better interprofessional practice. PURPOSE: To determine whether a training programme based on the ICF framework resulted in improved interprofessional behaviour among HPs in Rwanda. METHODOLOGY: A cluster randomised control trial was used. Four district hospitals were randomly allocated to receive either a day's training in interprofessional practice based on the ICF framework (experimental) or a short talk and a booklet on the topic (control). A total of 203 participants included medical doctors, nurses, and other HPs took part in this study. Simple random sampling was used to select the hospital records of 200 patients discharged from relevant wards at both the experimental and control hospitals at baseline and at two, four and six months after training (800 patients' records from each group). A self-designed checklist has undergone some validation and was based on the ICF conceptual model was used to audit the quality of information included in the patients' records. Ethical approval was obtained from the relevant authorities. RESULTS: The demographic and medical profile of the patients in the two sets was equivalent. An ANOVA and post-hoc Tukey test indicated the mean number of items correctly filled in was not significant at baseline (p = 0.424) but the difference was significant (p < .001) for the post-intervention scores at two, four and six months. The control group scores did not improve over time. The improved behavior was still evident at six months although it had begun to decay. CONCLUSION: Behaviour change as evidenced by more comprehensive recording of patient management can result from a well-structured training programme. The ICF appeared to provide a common language and facilitate HPs interaction and patient management plans. IMPLICATION: The ICF provided an effective conceptual framework to structure the content of the training and the audit tool. It is recommended that the framework be used to facilitate interprofessional education and practice in Rwanda and that the training approach may be applicable to other health care contexts.

Item generation for a proxy health related quality of life measure in very young children.

BACKGROUND AND AIMS: Very young children have a relatively high prevalence of morbidity and mortality. Health care and supportive technology has improved but may require difficult choices and decisions regarding the allocation of these resources in this age group. Cost-effective analysis (CEA) can inform these decisions and thus measurement of Health-Related Quality of Life (HRQoL) is becoming increasingly important. However, the components of HRQoL are likely to be specific to infants and young children. This study aimed to develop a bank of items to inform the possible development of a new proxy report instrument. METHODS: A review of the literature was done to define the concepts, generate items and identify measures that might be an appropriate starting point of reference. The items generated from the cognitive interviews and systematic review were subsequently pruned by experts in the field of HRQoL and paediatrics over two rounds of a Delphi study. RESULTS: Based on the input from the different sources, the greatest need for a new HRQoL measure was in the 0-3-year age group. The item pool identified from the literature consisted of 36 items which was increased to 53 items after the cognitive interviews. The ranking of items from the first round of the Delphi study pruned this pool to 28 items for consideration. The experts further reduced this pool to 15 items for consideration in the second round. The experts also recommended that items could be merged due to their similar nature or construct. This process allowed for further reduction of items to 11 items which showed content validity and no redundancy. CONCLUSION: The need for an instrument to measure appropriate aspects of HRQoL in infants and young children became apparent as items included in existing measures did not cover the required spectrum. The identification of the final items was based on a sound conceptual model, acceptability to stakeholders and consideration of the observability of the item selected. The pruned item bank of 11 items needs to be subject to further testing with the target population to ensure validity and reliability before a new measure can be developed.

Disability prevalence-context matters: A descriptive community-based survey.

BACKGROUND: There is increasing interest in the collection of globally comparable disability data. Context may influence not only the rates but also the nature of disability, thus locally collected data may be of greater use in service delivery planning than national surveys. OBJECTIVES: The objective of this article was to explore the extent to which two areas, both under-resourced but geographically and socially distinct, differed in terms of the prevalence and patterns of disability. METHOD: A cross-sectional descriptive survey design was utilised, using stratified cluster sampling in two under-resourced communities in the Western Cape, South Africa. Nyanga is an informal urban settlement in Cape Town and Oudtshoorn is a semi-rural town. The Washington Group Short Set of questions was used to identify persons with disabilities (PWD), and a self-developed questionnaire obtained socio-demographic information. RESULTS: The overall prevalence of disability was 9.7% (confidence intervals [CIs] 9.7-9.8) and the proportion of PWD was significantly different between the two sites (Chi-Sq = 129.5, p < 0.001). In the urban area, the prevalence rate of any disability was 13.1% (CIs 12.0-14.3) with 0.3% (CIs 0.1-0.6) reporting inability to perform any function at all. In contrast, the semi-rural community had a lower overall prevalence rate of 6.8% (CIs 6.0% - 7.8%) but a higher rate of those unable to perform any function: 1% (CIs 0.07-1.4). Disability was associated with gender, age, unemployment and lower income status in both areas. CONCLUSION: Deprived areas tend to show higher disability prevalence rates than the National Census estimates. However, the discrepancy in prevalence and patterns of disability between the two under-resourced areas indicates the need for locally specific data when planning health interventions.

Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa.

BACKGROUND: Health-Related Quality of Life (HRQoL) data together with clinical findings allow for monitoring of intervention efficacy and the effect on HRQoL. Children with Juvenile Idiopathic Arthritis (JIA) experience symptoms often persisting into adulthood, emphasising the need to track HRQoL. OBJECTIVES: The aim of this study was to investigate psychometric properties of the EuroQol five-dimensional youth questionnaire (EQ-5D-Y) in children with JIA. METHODS: A cross-sectional, analytical study design was used. Children 8 to 15 years were recruited, completing the self-report EQ-5D-Y and two other HRQoL questionnaires. Known group validity was established by comparing the effect size between children with different disease severities. Concurrent validity was tested using Kruskal-Wallis to compare the ranking of scores on different questionnaires. Feasibility was assessed by number of missing responses and time to complete each questionnaire. RESULTS: All questionnaires were able to distinguish between children with different JIA severity. There was a significant difference in ranking of most Juvenile Arthritis Multidimensional Assessment Report dimension scores across EQ-5D-Y levels, (p < 0.05), indicating concurrent validity. There was poor concurrent validity with the PedsQL dimensions tested with EQ-5D-Y, except for 'pain' (p = 0.001). The EQ-5D-Y was the quickest to complete with no missing values. CONCLUSION: This study showed that the EQ-5D-Y is valid and feasible in measuring HRQoL in JIA children and adequately responsive to detect change over time. CLINICAL IMPLICATIONS: It is quick and easy to use in a busy clinical setting, allowing for effective JIA management monitoring.

Improvements in health-related quality of life and function in middle-aged women with chronic diseases of lifestyle after participating in a non-pharmacological intervention programme: A pragmatic randomised controlled trial.

BACKGROUND: Musculoskeletal diseases consume a large amount of health and social resources and are a major cause of disability in both low- and high-income countries. In addition, patients frequently present with co-morbid chronic diseases of lifestyle. The area of musculoskeletal disease is restricted by a lack of epidemiological knowledge, particularly in low- and middle-income countries. OBJECTIVES: This pragmatic randomised controlled trial assessed the benefits of a 6-week physiotherapy intervention for middle-aged women with musculoskeletal conditions compared to usual care. METHOD: A weekly 2-h educational programme utilising a workbook, discussion group and exercise class was presented for the intervention group, while the control group received usual care. The primary outcome was health-related quality of life. Parametric and non-parametric data were used to determine the equivalence between the groups. RESULTS: Twenty-two participants were randomised to the intervention and 20 to the control group. The control group demonstrated no within-group improvement in health-related quality of life items, compared to significant improvements in two items in the intervention group. The change in median utility score within the intervention group was twice as large as the change in the control group. With regard to self-efficacy, the intervention group demonstrated significant within-group changes in perceived management of fatigue and discomfort. CONCLUSION: The positive impact of the intervention on the participants suggests that the programme should continue at the clinic in question, but should be presented at a more convenient time for participants who work, as recruitment to the study was less than anticipated. Primary health care systems in South Africa urgently need to put structures in place for effective management of the functional impact of chronic diseases of lifestyle and musculoskeletal conditions. It is time for physiotherapists and possibly other health care professionals to participate in the development of appropriate community level interventions to address the functioning and quality of life of individuals living with the diseases.

Joint pain within adult middle-aged women, attending a community clinic in a peri-urban area in South Africa: a cross-sectional survey.

BACKGROUND: This study aimed to investigate the prevalence of joint pain in women between the ages of 40 and 64 years who attended a community clinic in the Free State to provide micro-information for health care planners. METHODS: A sample of convenience was utilized in the cross-sectional survey. Health care workers were recruited to conduct the survey. Outcome measures included the Community-Oriented-Programme-For-The-Control-Of-Rheumatic-Disease questionnaire and European Quality of Life - 5 Dimensions health related quality of life measure. Descriptive statistics were calculated for categorical data and non-parametric tests for ordinal data. Quality Adjusted Life Years lost were based on the preference weights generated by the European Quality of Life - 5 Dimensions. RESULTS: One thousand three hundred seventy-six participants were enrolled. The prevalence of joint pain experienced in either the short or the long term was 62.1% (CI 59.5-64.6%). The total number of Quality Adjusted Life Years lost in this sample was 41.4, that is a rate of 3008.7 (CI 2740-3310) per 100,000. CONCLUSION: Epidemiological transition seems to be rapidly taking place in South Africa and the prevalence of joint pain is considerable. Primary health care systems should develop a cost-effective approach to manage and identify joint pain and improve the health-related quality of life of those living with this. Implications for Rehabilitation Prevalence of joint pain is considerable. Consume large amounts of health and social resources. A protocol for routine screening should be developed in community clinics. Cost-effective approach to manage joint pain should be identified to improve healthrelated quality of life of individuals living with joint pain.

An ultrasonographic analysis of the activation patterns of abdominal muscles in children with spastic type cerebral palsy and in typically developing individuals: a comparative study.

BACKGROUND: Abdominal muscles have stiffer appearance in individuals with spastic type cerebral palsy (STCP) than in their typically developing (TD) peers. This apparent stiffness has been implicated in pelvic instability, mal-rotation, poor gait and locomotion. This study was aimed at investigating whether abdominal muscles activation patterns from rest to activity differ in the two groups. METHOD: From ultrasound images, abdominal muscles thickness during the resting and active stages was measured in 63 STCP and 82 TD children. The thickness at each stage and the change in thickness from rest to activity were compared between the two groups. RESULTS: Rectus abdominis (RA) muscle was the thickest muscle at rest as well as in active stage in both groups. At rest, all muscles were significantly thicker in the STCP children (p <  0.001). From rest to active stages muscle thickness significantly increased (p <  0.001) in the TD group and significantly decreased (p <  0.001) in the STCP children, except for RA, which became thicker during activity in both groups. In active stages, no significant differences in the thickness in the four abdominal muscles were found between the STCP and the TD children. CONCLUSION: Apart from the RA muscle, the activation pattern of abdominal muscles in individuals with STCP differs from that of TD individuals. Further studies required for understanding the activation patterns of abdominal muscles prior to any physical fitness programmes aimed at improving the quality of life in individuals with STCP. TRIAL REGISTRATION: HREC REF: 490/2011. Human Research Ethics Committee, Faculty of Health Sciences, University of Cape Town, South Africa. November 17, 2011.

A systematic review of the psychometric properties of the cross-cultural translations and adaptations of the Multidimensional Perceived Social Support Scale (MSPSS).

BACKGROUND: Social support (SS) has been identified as an essential buffer to stressful life events. Consequently, there has been a surge in the evaluation of SS as a wellbeing indicator. The Multidimensional Perceived Social Support Scale (MSPSS) has evolved as one of the most extensively translated and validated social support outcome measures. Due to linguistic and cultural differences, there is need to test the psychometrics of the adapted versions. However, there is a paucity of systematic evidence of the psychometrics of adapted and translated versions of the MSPSS across settings. OBJECTIVES: To understand the psychometric properties of the MSPSS for non-English speaking populations by conducting a systematic review of studies that examine the psychometric properties of non-English versions of the MSPSS. METHODS: We searched Africa-Wide Information, CINAHL, Medline and PsycINFO, for articles published in English on the translation and or validation of the MSPSS. Methodological quality and quality of psychometric properties of the retrieved translations were assessed using the COSMIN checklist and a validated quality assessment criterion, respectively. The two assessments were combined to produce the best level of evidence per language/translation. RESULTS: Seventy articles evaluating the MSPSS in 22 languages were retrieved. Most translations [16/22] were not rigorously translated (only solitary backward-forward translations were performed, reconciliation was poorly described, or were not pretested). There was poor evidence for structural validity, as confirmatory factor analysis was performed in only nine studies. Internal consistency was reported in all studies. Most attained a Cronbach's alpha of at least 0.70 against a backdrop of fair methodological quality. There was poor evidence for construct validity. CONCLUSION: There is limited evidence supporting the psychometric robustness of the translated versions of the MSPSS, and given the variability, the individual psychometrics of a translation must be considered prior to use. Responsiveness, measurement error and cut-off values should also be assessed to increase the clinical utility and psychometric robustness of the translated versions of the MSPSS. TRIAL REGISTRATION: PROSPERO - CRD42016052394.

Influence of the child's perceived general health on the primary caregiver's health status.

BACKGROUND: In estimating the impact of an intervention, ignoring the effect of improving the health of one member of the caregiver/child dyad on the Health Related Quality of Life (HRQoL) of the other member may lead to an underestimation of the utility gained. This may be particularly true for infants/young children and their caregivers. The aim of this study was to quantify the interaction between the child's perceived general health as assessed by the newly developed Toddler and Infant Questionnaire (TANDI) on the reporting of the caregiver's own HRQoL as assessed by the EQ-5D-3 L. METHODS: A sample of 187 caregivers participated. A total of 60 caregivers of acutely-ill (AI) and 60 caregivers of chronically-ill (CI) children were recruited from a children's hospital. The 67 caregivers of general population (GP) children were recruited at a pre-school. Each caregiver completed the proxy rating of their child's HRQoL on the TANDI (The TANDI is an experimental HRQoL instrument, modelled on the EQ-5D-Y proxy, for children aged 1-36 months), which comprises of six dimensions of health and a rating of general health on a Visual Analogue Scale (VAS). The caregiver completed the EQ-5D-3 L, a self-report measure of their own HRQoL. Forward stepwise regression models were developed with 1) the VAS score of the caregiver and 2) the VAS score of the child as dependent variables. The independent variables for the caregiver included dummy variables for the presence or absence of problems on the EQ-5D-3 L and the VAS score of the child. The independent variables for the child included dummy variables for each TANDI dimension and the VAS of the caregiver. RESULTS: The TANDI results indicated that in five of the six dimensions AI children had more problems than the other two groups and the GP children were reported to have a significantly higher VAS than the other two groups. The child's VAS was significantly correlated with the caregiver's VAS in all groups, but most strongly in the AI group. The preference based scores (using the UK TTO tariff) were only correlated in the AI group. The inclusion of the child's VAS increased the variance accounted for 11% of the VAS score of the caregiver. Anxiety and depression was the only dimension which accounted for more variance (18%). Similarly the perceived health state, VAS of the caregiver accounted for 14% of the variance in the child's VAS, second only to problems with play (25%). CONCLUSION: There does indeed appear to be a strong relationship between the VAS scores of the children and their caregivers. The perceived general health of the child influences the caregivers reporting of their general health, more than their own report of experiencing pain or discomfort or problems with mobility. Thus, improving the HRQoL of the very young child may improve the caregiver's HRQoL as well. Conversely, if the caregiver has a lower perceived HRQoL this may result in a decrement in the reported VAS of the child, independent of the presence or absence of problems in the different dimensions. This improvement is not currently captured by Cost Utility Analysis (CUA). It is recommended that future research investigates this effect with regards to CUA calculations.

Assisted autogenic drainage in infants and young children hospitalized with uncomplicated pneumonia, a pilot study.

BACKGROUND AND PURPOSE: Pneumonia is the most important respiratory problem in low-to-middle income countries. Airway clearance therapy continues to be used in children with pneumonia and secretion retention; however, there is lack of evidence to support or reject this treatment. This study aimed to investigate the feasibility of a randomized controlled trial (RCT) on the efficacy and safety of assisted autogenic drainage (AAD) compared to standard nursing care in children hospitalized with uncomplicated pneumonia. METHODS: A single-blinded pilot RCT was conducted on 29 children (median age 3.5 months, IQR 1.5-9.4) hospitalized with uncomplicated pneumonia. The intervention group received standard nursing care with additional bi-daily AAD, for 10 to 30 min. The control group only received standard nursing care, unless otherwise deemed necessary by the physician or physiotherapist. The primary outcome measure was duration of hospitalization. The secondary outcome measures included days of fever and supplemental oxygen support; respiratory rate (RR) and heart rate adjusted for age; RR and oxygen saturation pre-, post-, and 1-hr post-treatment; oxygen saturation; adverse events; and mortality. RESULTS: No difference was found for duration of hospitalization (median 7.5 and 7.0 days for the control and intervention groups, respectively); however, Kaplan-Meier analysis revealed a strong tendency towards a shorter time to discharge in the intervention group (p = .06). No significant differences were found for the other outcome measures at time of discharge. No adverse events were reported. Within the intervention group, a significant reduction in RR adjusted for age was found. DISCUSSION: As no adverse events were reported, and AAD did not prolong hospitalization; AAD might be considered as safe and effective in young children with uncomplicated pneumonia. However, a larger multicentred RCT is warranted to determine the efficacy of AAD compared to standard nursing care.

A systematic review protocol on the effectiveness of therapeutic exercises utilised by physiotherapists to improve function in patients with burns.

BACKGROUND: Therapeutic exercises play a crucial role in the management of burn injuries. The broad objective of this review is to systematically evaluate the effectiveness, safety and applicability to low-income countries of therapeutic exercises utilised by physiotherapists to improve function in patients with burns. Population = adults and children/adolescents with burns of any aspect of their bodies. Interventions = any aerobic and/or strength exercises delivered as part of a rehabilitation programme by anyone (e.g. physiotherapists, occupational therapists, nurses, doctors, community workers and patients themselves). Comparators = any comparator. Outcomes = any measure of outcome (e.g. quality of life, pain, muscle strength, range of movement, fear or quality of movement). Settings = any setting in any country. METHODS/DESIGN: A systematic review will be conducted by two blinded independent reviewers who will search articles on PubMed, CiNAHL, Cochrane library, Medline, Pedro, OTseeker, EMBASE, PsychINFO and EBSCOhost using predefined criteria. Studies of human participants of any age suffering from burns will be eligible, and there will be no restrictions on total body surface area. Only randomised controlled trials will be considered for this review, and the methodological quality of studies meeting the selection criteria will be evaluated using the Cochrane Collaboration tool for assessing risk of bias. The PRISMA reporting standards will be used to write the review. A narrative analysis of the findings will be done, but if pooling is possible, meta-analysis will be considered. DISCUSSION: Burns may have a long-lasting impact on both psychological and physical functioning and thus it is important to identify and evaluate the effects of current and past aerobic and strength exercises on patients with burns. By identifying the characteristics of effective exercise programmes, guidelines can be suggested for developing intervention programmes aimed at improving the function of patients with burns. The safety and precautions of exercise regimes and the optimal frequency, duration, time and intensity will also be examined to inform further intervention. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CDR42016048370 .