Condition-specific Outcome Measures Research Articles

P.069 Development of a streamlined multi-disciplinary care pathway for compression neuropathies

Background: Care for patients with compression neuropathies (carpal tunnel syndrome, ulnar neuropathy) is often fragmented, uncoordinated, and slow. Patients go through multiple steps (neurology consultation, nerve testing, ultrasound, splints, injection, surgical opinion, surgery) with waits between each step. We used a Value-Based Health Care (VBHC) model to develop a multidisciplinary clinic with a novel care pathway. Methods: A Shared Care initiative supported the development of an Integrated Practice Unit (IPU). Key multidisciplinary team members were identified. Participants attended a curated three part VBHC workshop. Process mapping enabled identification of efficiencies. Results: 14 team members participated in the workshops. Condition specific outcome measures were identified (Boston CTS measure, 10-point touch, MRC strength and pain scale) and will be collected longitudinally. Criteria and clinical pathways were developed for mild, moderate, and severe carpal tunnel syndrome. Resource materials for patients and providers were developed. Conclusions: A VBHC framework supported development of a novel clinic for compression neuropathy. Responsibility for the full cycle of care rests with the IPU. Systematically tracking functional outcome measures enables quality improvement. By streamlining the patient journey and substantially reducing wait times between steps, the new care pathway reduces complexity and improve outcomes. Evaluation of impact if this new clinical model is ongoing.

Psychometric analysis of the modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) in a prospective multicentre study

BackgroundLong COVID (LC) is a novel multisystem clinical syndrome affecting millions of individuals worldwide. The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) is a condition-specific patient-reported outcome measure designed for assessment...

Long COVID Clinical Severity Types Based on Symptoms and Functional Disability: A Longitudinal Evaluation.

Background: Long COVID (LC) is a multisystem clinical syndrome with functional disability and compromised overall health. Information on LC clinical severity types is emerging in cross-sectional studies. This study explored the pattern and consistency of long COVID (LC) clinical severity types over time in a prospective sample. Methods: Participants with LC completed the condition-specific outcome measure C19-YRSm (Yorkshire Rehabilitation Scale modified version) at two assessment time points. A cluster analysis for clinical severity types was undertaken at both time points using the k-means partition method. Results: The study included cross-sectional data for 759 patients with a mean age of 46.8 years (SD = 12.7), 69.4% females, and a duration of symptoms of 360 days (IQR 217 to 703 days). The cluster analysis at first assessment revealed three distinct clinical severity type clusters: mild (n = 96), moderate (n = 422), and severe (n = 241). Longitudinal data on 356 patients revealed that the pattern of three clinical severity types remained consistent over time between the two assessments, with 51% of patients switching clinical severity types between the assessments. Conclusions: This study is the first of its kind to demonstrate that the pattern of three clinical severity types is consistent over time, with patients also switching between severity types, indicating the fluctuating nature of LC.

Cross-Cultural Validation of the Thai Oral Health Impact Profile for Temporomandibular Disorders

ObjectivesThe Oral Health Impact Profile for Temporomandibular Disorders (OHIP-TMDs) is a validated condition-specific outcome measure to help guide decision-making in the management of the condition. There is no Thai version of OHIP-TMDs, and therefore the original English version needs cross-cultural adaptation translation, and validation with a Thai population to reduce the anomalies due to language and cultural differences. This study aimed to develop the Thai-language version of OHIP-TMDs, perform a cross-cultural adaptation to Thailand, and assess its content validity, internal consistency, reliability, and construct validity. MethodsThe original English version of OHIP-TMDs was forward and backward translated into Thai language using the International Network for Orofacial Pain and Related Disorders methodology (INfORM) protocol for cross-cultural adaptation. The Content Validity Index (CVI) was performed by 5 orofacial pain (OFP) specialists to establish content validity. The OHIP-TMDs-T was then tested in 2 groups of Thai dental patients including 110 TMD patients and 110 control participants. The internal reliability and test-retest reliability (n = 30) were investigated in the TMD group using Cronbach alpha coefficient and intraclass correlation coefficient (2-way mixed effect model), respectively. The difference in OHIP-TMDs-T score between the TMD group and control group was investigated for known group validity. ResultsCronbach alpha and intraclass correlation coefficients were 0.942 and 0.797, respectively. The CVI collected from the OFP specialists was 0.92. There was a statistical difference in the OHIP-TMDs-T overall score between the TMD group (95% CI, 40–46) and control group (95% CI, 2.0–3.4) (Z = 9.060, r = 1, P < .001). ConclusionsThe OHIP-TMDs-T is a valid and reliable tool for evaluating the quality of life and the impact on oral health in Thai patients with TMD.

What Aspects of Quality of Life are Important from Palliative Care Patients' Perspectives? A Framework Analysis to Inform Preference-Based Measures for Palliative and End-of-Life Settings.

Preference-based outcome measures are commonly applied in economic analyses to inform healthcare resource allocation decisions. Few preference-based outcome measures have been specifically developed for palliative and end-of-life settings. This study aimed to identify which quality-of-life domains are most important to Australians receiving specialised palliative care services to help determine if the development of a new condition-specific preference-based outcome measure is warranted. In-depth face-to-face interviews were conducted with 18 participants recruited from palliative care services in South Australia. Data were analysed using a framework analysis drawing on findings from a systematic review of international qualitative studies investigating the quality-of-life preferences of patients receiving palliation (domains identified included cognitive, emotional, healthcare, personal autonomy, physical, preparatory, social, spiritual). Participants identified missing or irrelevant domains in the EQ-5D and QLU-C10D questionnaires and ranked the importance of domains. A priori domains were refined into cognitive, environmental, financial, independence, physical, psychological, social and spiritual. The confirmation of the eight important quality-of-life domains across multiple international studies suggests there is a relatively high degree of convergence on the perspectives of patients in different countries. Four domains derived from the interviews are not covered by the EQ-5D and QLU-C10D (cognitive, environmental, financial, spiritual), including one of the most important (spiritual). Existing, popular, preference-based outcome measures such as the EQ-5D do not incorporate the most important, patient-valued, quality-of-life domains in the palliative and end-of-life settings. Development of a new, more relevant and comprehensive preference-based outcome measure could improve the allocation of resources to patient-valued services and have wide applicability internationally.

Further psychometric validation and test-retest reproducibility of the WOUND-Q.

WOUND-Q is a condition-specific patient-reported outcome measure developed for all types of chronic wounds, located anywhere on the body. To establish reliability and validity of a patient-reported outcome measure, multiple pieces of evidence are required. The purpose of this study was to examine the measurement properties of 9 of the 13 WOUND-Q scales and perform a test-retest reproducibility study in an international sample. In August 2022, we invited members of an international online community (Prolific.com) with any type of chronic wound to complete a survey containing the WOUND-Q scales, the Wound-QoL and EQ-5D. A test-retest survey was performed 7 days after the first survey. It was possible to examine the reliability and validity of eight of the nine WOUND-Q scales by Rasch Measurement Theory (RMT). To examine test-retest reproducibility intraclass correlation coefficients (ICCs), the standard error of the measurement and the smallest detectable change were calculated. In total, 421 patients from 22 different countries with 11 different types of chronic wounds took part in this study. Our analyses provided further evidence of the reliability and validity of the scales measuring wound characteristics (assessment, drainage, smell), health-related quality of life (life impact, psychological, sleep, social) and wound treatment (dressing).

Assessing the validity and responsiveness of a generic preference quality of life measure in the context of posttraumatic stress disorder

PurposeThere is limited research exploring the usefulness of generic preference-based quality of life (GPQoL) measures used to facilitate economic evaluation in the context of posttraumatic stress disorder (PTSD). The aim of the current study was to explore the validity and responsiveness of a common GPQoL measure (Assessment of Quality of Life 8 Dimension [AQoL-8D]) in relation to a PTSD condition-specific outcome measure (Posttraumatic Stress Disorder Checklist for the DSM-5 [PCL-5]).MethodThis aim was investigated in a sample of individuals (N = 147) who received trauma-focused cognitive-behavioural therapies for posttraumatic stress disorder. Convergent validity was investigated using spearman’s correlations, and the level of agreement was investigated using Bland–Altman plots. Responsiveness was investigated by exploring the standardised response means (SRM) from pre-post-treatment across the two measures, which allow the comparison of the magnitude of change between the measures over time.ResultsCorrelations between the AQoL-8D (dimensions, utility and summary total scores) and the PCL-5 total score ranged from small to large and agreement between the measures was considered moderate to good. While SRMs were large for the AQoL-8D and PCL-5 total scores, the SRM for the PCL-5 was nearly double that of the AQoL-8D.ConclusionOur findings demonstrate that the AQoL-8D has good construct validity but present preliminary evidence that economic evaluations using only GPQoL measures may not fully capture the effectiveness of PTSD treatments.

Patient-reported outcomes and patient-reported outcome measures in liver transplantation: a scoping review.

Generic or condition-specific Patient-reported Outcome Measures (PROMs) are used to measure physical, mental, and social aspects of health to promote patient-centered care. This scoping review aims to identify and summarize generic and condition-specific PRO domains and PROMs that have been assessed and used in liver transplant (LT) candidates and recipients. We searched Medline, Embase, Cochrane Database of Systematic Reviews and Register of Trials, PsychInfo, and CINAHL from inception to 08/26/2020. Included studies addressed a PRO or PROM in LT candidates or recipients. After screening, 341 studies yielded 189 unique PRO domains. Mental health domains (depression, anxiety, and guilt) were most frequently assessed, followed by domains of physical and social health. Fifty-one generic and three condition-specific unique PROMs were identified, with only 13% (n = 45) of studies including condition-specific tools. The most frequent PROMs were the SF-36, Nottingham Health Profile, Hospital Anxiety and Depression Scale, followed by the Liver Disease Quality of Life (LDQoL). Very few studies used transplant-specific PROMs, which may partly be related to the scarcity of LT-specific instruments. We will use these results in future qualitative research to identify PROs and PROMs to build an electronic PROM toolkit to facilitate patient-centered LT care.

Condition-Specific Oral Health-Related Quality of Life (CS-OHRQoL) measures in Orthodontics- A Narrative Review

Outcomes pertaining to orthodontics can be either ‘disease’ outcome or ‘treatment’ outcome. The scales used for outcome assessment are usually the same for both and can be classified as generic or condition-specific. Generic scales are used in general for a variety of clinical conditions in dentistry, whereas condition-specific scales are used for specific problems like malocclusion. Due to the peculiar nature of orthodontic problems that do not fall into the definition of a disease, generic scales are of little use and condition-specific ones are recommended. The present article aims to provide a summary of the available condition-specific patient-reported outcome measures in orthodontics and perform a critical analysis of the same.

Design of a treatment satisfaction measure for patients undergoing varicose vein treatment: Venous Treatment Satisfaction Questionnaire (VenousTSQ).

Established condition-specific patient-reported outcome measures for varicose veins are limited to the measurement of health status and function. A treatment satisfaction measure is needed to understand patient satisfaction with different treatment options. The aim of this study was to design a Venous Treatment Satisfaction Questionnaire (VenousTSQ) that would be ready for large-scale data collection and psychometric evaluation. Relevant items were selected from the -TSQ Item Library and new items were designed where necessary. A draft VenousTSQ was prepared using the existing AneurysmTSQ as a template. Fifteen interviews were conducted from 4 days to 16 months after the procedure. The interviews were designed to elicit important sources of satisfaction or dissatisfaction before completion of draft questionnaires. The VenousTSQ drafts were modified between sets of interviews until no further changes were required. The final VenousTSQ consists of two questionnaires: VenousTSQ early (VenousTSQe) and VenousTSQ status (VenousTSQs). Items that need be asked only once are in the VenousTSQe, whereas those that can usefully be asked more than once are in the VenousTSQs. Of the 16 unique items forming the VenousTSQ, 12 were from the -TSQ Item Library. Only 1 of these 12 required significant modification. The VenousTSQ represents a condition-specific psychological outcome measure for varicose veins, enabling patient satisfaction or dissatisfaction with such treatments to be measured. Large-scale data collection is under way to establish optimal scoring, quantitative validity, and reliability of the VenousTSQ.

LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK.

IntroductionLong COVID, a new condition whose origins and natural history are not yet fully established, currently affects 1.5 million people in the UK. Most do not have access to specialist long COVID services. We seek to optimise long COVID care both within and outside specialist clinics, including improving access, reducing inequalities, helping self-management and providing guidance and decision support for primary care. We aim to establish a ‘gold standard’ of care by systematically analysing current practices, iteratively improving pathways and systems of care.Methods and analysisThis mixed-methods, multisite study is informed by the principles of applied health services research, quality improvement, co-design, outcome measurement and learning health systems. It was developed in close partnership with patients (whose stated priorities are prompt clinical assessment; evidence-based advice and treatment and help with returning to work and other roles) and with front-line clinicians. Workstreams and tasks to optimise assessment, treatment and monitoring are based in three contrasting settings: workstream 1 (qualitative research, up to 100 participants), specialist management in 10 long COVID clinics across the UK, via a quality improvement collaborative, experience-based co-design and targeted efforts to reduce inequalities of access, return to work and peer support; workstream 2 (quantitative research, up to 5000 participants), patient self-management at home, technology-supported monitoring and validation of condition-specific outcome measures and workstream 3 (quantitative research, up to 5000 participants), generalist management in primary care, harnessing electronic record data to study population phenotypes and develop evidence-based decision support, referral pathways and analysis of costs. Study governance includes an active patient advisory group.Ethics and disseminationLOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Participants will provide informed consent. Dissemination plans include academic and lay publications, and partnerships with national and regional policymakers.Trial registration number NCT05057260, ISRCTN15022307.

Long-Term Complications and Patient-Reported Outcomes After Alloplastic Breast Reconstruction.

The most widely used method for breast reconstruction in Taiwan is alloplastic breast reconstruction, and traditionally, it can be categorized into immediate or delayed, single-stage or 2-stage procedures. We evaluated clinical outcomes and analyzed patients' self-reported satisfaction and quality of life after alloplastic breast reconstruction based on a previous preliminary study. The patients who underwent primary alloplastic breast reconstruction after mastectomy were recruited in 2006 to 2020 at a single institute in Taiwan. The assessment of clinical outcomes was conducted by retrospective chart review and risk analysis. The patients also completed the BREAST-Q, a condition-specific patient-reported outcome measure, at least 6 months after treatment. A total of 237 patients with 247 reconstructed breasts were enrolled in this study. The demographics showed that 205 (83%) were reconstructed using a 2-stage tissue expander-based procedure and 42 (17%) were 1-stage direct-to-implant reconstructions. The mean follow-up time was 79.5 months. The clinical assessment revealed that the overall complication rate was 34%, with infection being the most common (21 patients; 8%). According to risk analysis, smoking (odds ratio, 7.626; 95% confidence interval, 1.56-37.30; P = 0.012), and nipple-sparing mastectomy (odds ratio, 3.281; 95% confidence interval, 1.54-6.99; P = 0.002) were significant risk factors for overall complications. The questionnaire response rate was 38% (94 of 247), at least 6 months after treatment. The total mean score was 69.78. At a single institute in Taiwan from 2006 to 2020, alloplastic breast reconstruction, either single- or 2-stage, have acceptable complication rate and good postoperative satisfaction based on patient-reported outcomes. Both patient- and surgery-related factors presented as significant risk factors. Precise patient selection and comprehensive discussion between the patient and physician may play the important role to achieve optimal aesthetic outcomes.

Psychometric Validation of the CLEFT-Q Patient Reported Outcome Measure: A Prospective Study to Examine Cross-Sectional Construct Validity.

CLEFT-Q is a condition-specific patient-reported outcome measure (PROM) for patients with cleft lip and/or palate (CL/P). The aim of this study was to examine the cross-sectional construct validity of the CLEFT-Q scales. Construct validity was assessed through a prospective study that tested hypotheses regarding correlations of scores with other PROMs that measure related constructs. Seven cleft centres in Canada, the USA, and UK were involved. Patients were aged eight to 29 years with CL/P. Before undergoing rhinoplasty, orthognathic, cleft lip scar revision, and alveolar bone graft, participants were asked to complete the following PROMs: CLEFT-Q (9 scales), Child Oral Health Impact Profile (socio-emotional subscale) and Cleft Hearing Appearance and Speech Questionnaire (features 1 subscale). The correlation coefficients examining the relationship between the scales were the main outcome measures. Correlations (Spearman) were calculated and interpreted as follows: <0.3 weak, 0.30 to 0.50 moderate, ≥0.50 strong. Participants (n = 177) were mostly male (61%) and aged between eight and 11 years (42%). Overall, 38 of 52 (73%) hypotheses tested were supported. More specifically, 20 of 26 (77%) hypotheses about correlations between the appearance scales were supported, two of three (67%) hypotheses about correlations between the health-related quality of life scales were supported, and 16 of 23 (70%) hypotheses about correlations between the appearance and health-related quality of life scales were supported. Cross-sectional construct validity of the CLEFT-Q scales adds further evidence of the psychometric properties of this instrument.

Concurrent validity and precision of the thumb disability examination (TDX) in first carpometacarpal osteoarthritis

Study DesignA descriptive psychometric study of precision and concurrent validity of the Thumb Disability Examination (TDX). IntroductionThumb carpometacarpal osteoarthritis (CMC OA) is a painful joint condition impacting the functionality of the hand. Therapists use patient-reported outcome measures to evaluate change in disability and symptomology in response to interventions. The TDX is the only condition-specific outcome measure for persons with thumb CMC OA. Its responsiveness, test-retest reliability and concurrent validity with the DASH are published, yet it's precision and concurrent validity with a hand-region-specific tool has not yet been established. Purpose of the StudyWe aimed to determine the precision and concurrent validity of the TDX with a region-specific outcome measure in people with thumb CMC OA. MethodsSixteen individuals with a medical diagnosis of CMC OA or a positive pressure-shear test completed the TDX across two visits and the Brief Michigan Hand Questionnaire (bMHQ) at the initial visit. The second visit was 7 to 21 days after the first. Self-administration of the TDX and bMHQ were observed by a licensed occupational therapist. ResultsAcross total and subscale scores of the TDX, standard error of measurement (SEM) values are used to indicate the precision of tool and demonstrate how confident a user can be that change in score exceeds the error inherent to the tool. Minimal detectable change percentage (MDC%) values for the TDX are acceptable (<30%). The TDX demonstrated high concurrent validity with the bMHQ (rs = -0.733; P = .001). DiscussionPrecision of the TDX is acceptable and the concurrent validity of the TDX with a commonly used region-specific scale is high. The study was limited by a small, demographically homogeneous sample due to difficulty in recruitment. ConclusionsThe TDX is a precise and valid outcome measure for individuals having a clinical diagnosis or indications of having thumb CMC OA.

A Comparison of Nerve-Specific, Condition-Specific, and Upper Extremity-Specific Patient-Reported Outcome Measures in Patients With Carpal and Cubital Tunnel Syndrome

Arm-, region-, tissue-, and condition-specific patient-reported outcome measures (PROMs) are available to address idiopathic mononeuropathy. This study compared PROMs with varying specificities in patients with idiopathic neuropathy of the upper extremity with respect to correlations with each another, sources of variation in scores, and floor and ceiling effects. One hundred fifty patients (130 with carpal tunnel syndrome, 30 with cubital tunnel syndrome, and 10 with both conditions) completed a nerve-specific PROM (Impact of Hand Nerve Disorders), a condition-specific PROM (Boston Carpal Tunnel Syndrome Questionnaire and/or Patient-Rated Ulnar Nerve Evaluation), and an upper extremity-specific PROM (Patient-Reported Outcomes Measurement Information System Physical Function Upper Extremity 7). We also gathered demographic and condition-related data (side, electrodiagnostic studies present, muscle atrophy, static loss of sensibility), and patients completed questionnaires measuring self-efficacy, kinesiophobia, and symptoms of depression. Correlation of the PROMs with each another and factors accounting for their variation were assessed, as well as the number of items to complete, time to complete, and floor and ceiling effects. Pearson correlations between PROMs were moderate to strong (0.56-0.90). Self-reported symptoms of depression were best able to account for the variations in symptom intensity and activity intolerance on all PROMs (adjusted R2 between 0.09 and 0.31). The Impact of Hand Nerve Disorders is a long questionnaire and took the most time to complete. All instruments had comparable floor effects; Patient-Reported Outcomes Measurement Information System Physical Function Upper Extremity had a ceiling of effect of 16%. This study adds to the evidence that specific and general PROMs correlate with each another, perhaps in part through their correlation with mental health. Based on this line of evidence and pending testing of potentially greater responsiveness in specific settings, we prefer to use a single simple, brief, and general PROM to quantify symptom intensity and activity intolerance for both routine patient care and research. Prognostic II.

Construct Validity and Validity to Change of the Patient-Specific Functional Scale in Patients with Shoulder and Low Back Pain: A Clinimetric Study

Background: Patient-specific and condition-specific measures are widely used in clinical practice and research to measure disability or change over time. While condition-specific outcome measures comprise a range of restrictions generally relevant for all patients, the Patient-Specific Functional Scale measures restrictions chosen by the individual patient. Objectives: Based on the hypothesis that patient-specific and conditionspecific scales deliver comparable results when used on group level. The aim of this study was to test for floor and ceiling effects, to evaluate construct validity and validity to change of the Patient-Specific Functional Scale when compared to condition-specific outcome measures. For this purpose, two datasets from patients with shoulder pain and low back pain were analyzed. Methods: Patient-Specific Functional Scale scores were compared to the Shoulder Pain and Disability Index and the Roland Morris Disability Questionnaire at 4 time-points using stem-and-leaf-plots and correlations using Pearson’s r. Hypothesis-driven correlation levels for data interpretation were predefined, with r ≥0.75=high, r ≥0.5=moderate, r ≥0.25=low. Results: Patient-Specific Functional Scale floor effects were comparable to condition-specific outcome measures in both samples. At none of the timepoints did the Patient-Specific Functional Scale correlate with the conditionspecific outcome measures in the expected manner. Conclusion: Hypotheses regarding expected ranges of correlation between the Patient-Specific Functional Scale and the condition-specific outcome measures for construct validity and validity to change were not met. While the use of the Patient-Specific Functional Scale in a clinical context has its advantages, the measure is not recommended for group-level evaluations.

Condition-specific health-related quality of life amongst amateur athletes six months and one-year following sport-related concussion: A prospective, follow-up

ObjectiveTo prospectively investigate the condition-specific health-related quality of life (HRQoL) of athletes six months and one-year following sport-related concussion. DesignProspective, longitudinal study. SettingClinical research centre at university school of public health. ParticipantsAmateur athletes who were diagnosed with sport-related concussion within one-week after presenting to a hospital emergency department were recruited along with sex-, age-, and activity-matched, non-concussed, control athletes. Concussion and control participants were assessed six months and one-year following sport-related concussion and study enrolment, respectively. Main outcome measuresParticipants completed the Post-Concussion Symptom Scale and five condition-specific HRQoL patient-reported outcome measures – Headache Impact Test-6, Fatigue Severity Scale, Neck Disability Index, Generalised Anxiety Disorder-7, and Dizziness Handicap Inventory. We performed Frequentist and Bayesian mixed-design analyses of variance to compare the concussion group and control group at both assessments and quantify whether there was greater evidence in favour of the null hypothesis compared with the alternative hypothesis. ResultsAt six-month and one-year assessments, the concussion group (n = 47; male = 72%; mean (SD) age = 22.68 (5.07)) and the control group (n = 47; male = 72%; mean (SD) age = 23.81 (4.60)) reported similar clinical symptom severity scores and condition-specific HRQoL. The proportion of athletes in the concussion group with clinically-impaired scores was similar to the proportion of non-concussed athletes with clinically-impaired scores. At six-month and one-year assessments, there was moderate-to-very strong evidence that there was no difference between concussion and control participants’ perceptions of the effects of headache, fatigue, neck pain, anxiety, and dizziness on HRQoL. ConclusionThere was moderate-to-very strong evidence in favour of no difference between the concussion and control groups on symptom severity scores and condition-specific HRQoL patient-reported outcome measures at six-month and one-year assessments. These results suggest that condition-specific HRQoL returns to the levels of non-concussed individuals within six months following sport-related concussion.

Development of a crosswalk for the bidirectional mapping of two commonly used condition-specific patient-reported outcome measures, the oswestry disability index (ODI) and the core outcome measures index (COMI)

Development of a crosswalk for the bidirectional mapping of two commonly used condition-specific patient-reported outcome measures, the oswestry disability index (ODI) and the core outcome measures index (COMI)

Headache- and Dizziness-Specific Health-Related Quality-of-Life Impairments Persist for 1 in 4 Amateur Athletes Who Are Cleared to Return to Sporting Activity Following Sport-Related Concussion: A Prospective Matched-Cohort Study

To prospectively investigate the recovery of athlete-reported symptoms and the condition-specific health-related quality of life (HRQoL) following sport-related concussion. Prospective matched-cohort study. We recruited amateur athletes who were diagnosed with sport-related concussion by emergency department physicians. Study participants were assessed at 3 time points following sport-related concussion. At each assessment, participants completed 5 condition-specific HRQoL patient-reported outcome measures to evaluate participants' perceptions of the effects of specific concussion-related symptoms on their HRQoL. We performed log-linear analyses to assess the proportion of concussed participants with clinically impaired condition-specific HRQoL compared with the proportion of participants in the control group with clinically impaired condition-specific HRQoL. Fifty participants with sport-related concussion and 50 control participants matched by sex, age, and activity completed the study. Upon return to sporting activity, there was a significantly greater proportion of participants in the concussion group who perceived that headache, neck pain, and dizziness had an adverse effect on their HRQoL compared with the control group. Two weeks after return to sporting activity, there was still a significantly greater proportion of participants in the concussion group who perceived that headache (χ21 = 9.0; odds ratio [OR] = 4.4; 95% confidence interval [CI]: 1.5, 15.2; P = .003) and dizziness (χ21 = 9.5; OR = 13.5; 95% CI: 1.8, 604.9; P = .006) had an adverse effect on their HRQoL compared with the proportion of clinically impaired participants in the control group. Of concussed participants, 1 in 4 perceived that headache and dizziness had adverse effects on their HRQoL after returning to sporting activity following sport-related concussion compared with nonconcussed, control participants. J Orthop Sports Phys Ther 2020;50(12):692-701. doi:10.2519/jospt.2020.9485.

Translation with Cross-cultural Adaptation of Cerebral Palsy Quality of Life Questionnaire for Children into Nepali and its Psychometric Properties

Background Cerebral Palsy Quality of Life questionnaire for children primary caregiver version is the widely used condition specific outcome measure which assesses the wellbeing of the child. It has been translated to many languages and shows excellent psychometric properties. Availability in Nepali would facilitate the use in clinical practice and research in Nepali population. Objective The objective of this study was translation with cross-culturally adaption of Cerebral Palsy Quality of Life questionnaire for children primary caregiver version into Nepali and assess its psychometric properties. Method Cross-cultural adaptation was performed using forward and backward translation protocol. Pretesting was done on six participants to confirm that the original concept was preserved. The Nepali version of questionnaire was administered twice for data collection. The feasibility, sensitivity, internal consistency and test-retest reliability was determined. Result Culturally adapted Nepali version showed good feasibility only the domain "Access to service" had a highest missing score related to use of the special equipment, attending kindergarten and applying for respite care. Floor and ceiling effect were < 15% in all the domains except in few items of "Pain and impact of disability" and "Social well being and acceptance". Test retest reliability (0.82 - 0.91) and internal consistency (0.68 - 0.84) was good. There were weak association of domains with the gross motor functional classification system level. Conclusion Cross-culturally adapted Nepali Cerebral Palsy Quality of Life questionnaire for children primary caregiver was developed. It demonstrates good psychometric properties confirming to assess quality of life of children with Cerebral palsy in Nepal.