scholarly journals Life Impact of Developmental Coordination Disorder: Qualitative Analysis of Patient and Therapist Experiences

2019 ◽  
Vol 12 (1) ◽  
pp. 491-494
Author(s):  
U. Ganapathy Sankar ◽  
R. Monisha
Keyword(s):  
Conceptual Framework ◽  
Health Professionals ◽  
Gold Standard ◽  
Daily Living ◽  
Assessment Tool ◽  
Developmental Coordination Disorder ◽  
Specific Patient ◽  
Patient Reported ◽  
Life Impact ◽  
Coordination Disorder

DCD are one of the more commonly occurring forms of Developmental disorder managed by therapists and their teams worldwide. The impacts of this disorder are not restricted to limitation in activity of daily living and participation in sports and academic activities with peer groups, but may also result in long term physical co morbidities, psychological, and social consequences. There is currently no gold standard assessment tool in the identification of DCD; however specific patient-reported outcome measures DCDQ remains in practice. This analysis aimed to develop a conceptual framework of life impacts of developmental coordination disorder from the experiences of caregivers and parents who have DCD Children as well as the health professionals who treat them. A qualitative investigation was done using semi-structured interviews with people (n=12) who had handling children with DCD (Caregivers/patients) and Therapists (n=6) who treat children with DCD. Interviews with caregivers were recorder and 1 therapist has been individually allotted for transcribing each phrase and codes them. The recorded and coded phrases were finally grouped in categories. Experience of health professionals ranged from 1 year to 15 years working with people with DCD. Health professionals included a pediatrician (1), physiotherapists (2), psychiatrist (1) and an occupational therapist (1). The conceptual framework derived from interview data included five themes (Physical, Occupational, Psychological, Daily Living, and Social). Therapist responses did not reveal any additional items, but majority of responses focus on physical and occupational therapy scope. The nature of life impact following DCD affects many areas of life. The findings from this research have provided an empirically derived conceptual framework from which a gold standard outcome measure can be designed for a geographic location.

scholarly journals Streamlining the KOOS Activities of Daily Living Subscale Using Machine Learning

2020 ◽  
Vol 8 (3) ◽  
pp. 232596712091044 ◽  
Author(s):  
Ashim Gupta ◽  
Ajish S.R. Potty ◽  
Deepak Ganta ◽  
R. Justin Mistovich ◽  
Sreeram Penna ◽  
...  
Keyword(s):  
Machine Learning ◽  
Activities Of Daily Living ◽  
Functional Outcome ◽  
Acl Reconstruction ◽  
Daily Living ◽  
High Accuracy ◽  
Quality Data ◽  
Specific Patient ◽  
Patient Reported ◽  
Essential Questions

Background: Functional outcome scores provide valuable data, yet they can be burdensome to patients and require significant resources to administer. The Knee injury and Osteoarthritis Outcome Score (KOOS) is a knee-specific patient-reported outcome measure (PROM) and is validated for anterior cruciate ligament (ACL) reconstruction outcomes. The KOOS requires 42 questions in 5 subscales. We utilized a machine learning (ML) algorithm to determine whether the number of questions and the resultant burden to complete the survey can be lowered in a subset (activities of daily living; ADL) of KOOS, yet still provide identical data. Hypothesis: Fewer questions than the 17 currently provided are actually needed to predict KOOS ADL subscale scores with high accuracy. Study Design: Cohort study (diagnosis); Level of evidence, 2. Methods: Pre- and postoperative patient-reported KOOS ADL scores were obtained from the Surgical Outcome System (SOS) data registry for patients who had ACL reconstruction. Categorical Boosting (CatBoost) ML models were built to analyze each question and its value in predicting the patient’s actual functional outcome (ie, KOOS ADL score). A streamlined set of minimal essential questions were then identified. Results: The SOS registry contained 6185 patients who underwent ACL reconstruction. A total of 2525 patients between the age of 16 and 50 years had completed KOOS ADL scores presurgically and 3 months postoperatively. The data set consisted of 51.84% male patients and 48.16% female patients, with a mean age of 29 years. The CatBoost model predicted KOOS ADL scores with high accuracy when only 6 questions were asked ( R2 = 0.95), similar to when all 17 questions of the subscale were asked ( R2 = 0.99). Conclusion: ML algorithms successfully identified the essential questions in the KOOS ADL questionnaire. Only 35% (6/17) of KOOS ADL questions (descending stairs, ascending stairs, standing, walking on flat surface, putting on socks/stockings, and getting on/off toilet) are needed to predict KOOS ADL scores with high accuracy after ACL reconstruction. ML can be utilized successfully to streamline the burden of patient data collection. This, in turn, can potentially lead to improved patient reporting, increased compliance, and increased utilization of PROMs while still providing quality data.

scholarly journals Assessment of Motor Activities of Daily Living: Spanish Cross-Cultural Adaptation, Reliability and Construct Validity of the DCDDaily-Q

2020 ◽  
Vol 17 (13) ◽  
pp. 4802 ◽  
Author(s):  
Laura Delgado-Lobete ◽  
Rebeca Montes-Montes ◽  
Berdien W. van der Linde ◽  
Marina M. Schoemaker
Keyword(s):  
Construct Validity ◽  
Activities Of Daily Living ◽  
Internal Consistency ◽  
Daily Living ◽  
Developmental Coordination Disorder ◽  
Culturally Adapted ◽  
Confirmatory Factor ◽  
Motor Activities ◽  
And Performance ◽  
Coordination Disorder

The DCDDaily-Q is an instrument that aims to comprehensively assess motor performance in a broad range of activities of daily living (ADL) and to identify risk of Developmental Coordination Disorder (DCD) in children. The aim of this study was to cross-culturally adapt the DCDDaily-Q into European Spanish (DCDDaily-Q-ES) and to test its psychometric properties in Spanish 5 to 10 year old children. The DCDDaily-Q was translated and cross-culturally adapted into Spanish following international guidelines. Two-hundred and seventy-six parents of typically developing Spanish children completed the final version of the DCDDaily-Q-ES (M = 7.5 years, SD = 1.7; girls = 50%). Confirmatory Factor Analysis (CFA), internal consistency, and corrected item-total correlations were conducted to test construct validity, internal consistency, and homogeneity of the DCDDaily-Q-ES. The DCDDaily-Q-ES achieved good semantic, conceptual, and cultural equivalence. CFA supported construct validity of the DCDDaily-Q-ES. Reliability values were also good (Cronbach’s alpha = 0.703–0.843; corrected item-total correlations = 0.262–0.567). This is the first study to cross-culturally adapt and examine the DCDDaily-Q outside the Netherlands. The findings suggest that the DCDDaily-Q-ES is a reliable and valid measure to assess learning, participation, and performance in a broad range of ADL.

783 Scar Revisions: Are We Asking the Right Questions?

2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S225-S226
Author(s):  
Natalia Ziolkowski ◽  
Jennifer Zuccaro ◽  
Joel Fish
Keyword(s):  
Gold Standard ◽  
Clinical Care ◽  
Phase 1 ◽  
Psychosocial Impact ◽  
Inclusion Criteria ◽  
Large Area ◽  
Specific Patient ◽  
Scar Revision ◽  
Patient Reported ◽  
Time Since Injury

Abstract Introduction Scars have wide-ranging effects on the individual and as such, many seek to have their scars. Currently, there is no gold standard for conducting scar revision consults. Scar-specific patient-reported outcome measures (PROM) are questionnaires created by individuals with scars and encompass all concepts of interest (COI) important to them. PROMs can be used for quality improvement (QI) initiatives to determine if all COI are being asked of patients. SCAR-Q, a new, internationally validated, scar-PROM measuring COI related to scar appearance, symptoms and function, and psychosocial impact was used. The purpose of this QI study was to determine if COI important to patients with scars are routinely asked during scar revision consults. Methods All scar revisions consults from July 1, 2017 to June 30, 2019 were reviewed at a single pediatric hospital using an electronic database. This study represents Phase 1 of the QI study approved by the institution and follows Model for Improvement methodology. Inclusion criteria were: patient aged ≥8 years, had a cutaneous scar, and speak English. Demographic information included: gender, age; and items related to the patient’s scar including etiology, time since injury, location, interventions; COI encompassed by SCAR-Q. Results 162 electronic patient charts were reviewed with 88 meeting inclusion criteria. 45 were females (51.1%) with an average age of 12.6(SD 3.1, 8–20 years) with time since injury scar of 4.0 years (SD4.6,1 month-17 years). Burns, specifically scalds (18,45.0%) were the most common etiology (40,45%). Scars were located predominantly on the face/scalp (34,39.5%), chest (16,18.6%), and arm (15,17.4%). Most patients had no previous scar intervention at the time of the consultation (43, 51.2%). No scar revision consults encompassed all COI as defined by the SCAR-Q with appearance and Symptom/Function questions being more common than Psychosocial (Table 1). Specifically, scar color, hardness/thickness, disliking the scar were the most frequently asked questions (Table 2). Conclusions There is currently no established gold standard for conducting scar revision consults. SCAR-Q, a newly validated scar-specific PROM was used to determine if all questions that are important to individuals with scars were asked during routine scar revision consults. The most common questions asked of individuals with scars were related to appearance followed closely by symptoms/functional implications. Questions related to psychosocial impact are not routinely asked and represent a large area of improvement. Next steps include implementing a scar-specific PROM to ensure that all COI are implemented in routine clinical care. Applicability of Research to Practice This research is applicable to practice as it shows that PROM can be utilized for QI studies including identifying areas that are lacking in scar revision consults.

Simultaneous assessment of targeted anticancer therapy-associated mucocutaneous adverse events.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20669-e20669
Author(s):  
Christine Bettine Boers-Doets ◽  
Hans Gelderblom ◽  
Joel Brian Epstein ◽  
Mario E. Lacouture ◽  
Ad A Kaptein
Keyword(s):  
Quality Of Life ◽  
Targeted Therapy ◽  
Adverse Events ◽  
Assessment Tool ◽  
Symptom Burden ◽  
Specific Patient ◽  
Study Protocols ◽  
Patient Reported ◽  
Meta Analyses

e20669 Background: Mucocutaneous adverse events (mcAEs), including papulopustular rash, xerosis, pruritus, paronychia, hand-foot skin reaction, edema, taste alterations, oral pain and ulceration, hair-, periungual-, and ocular changes occur in the majority of patients during targeted anticancer therapies. Different mcAEs can be present with a variable symptom burden and affect upon patients’ quality of life. Use of standardized targeted therapy specific tools allows comparison of outcomes from different studies and in meta-analyses, advancing patient care and improving outcomes. A mcAE specific assessment tool about symptom burden is currently not available. A questionnaire which assesses both targeted therapy specific patient reported outcomes (PRO) measures and healthcare provider reported outcomes (HPRO) measures is warranted, therefore. Methods: A three-phase process was utilized for item generation, item reduction and scale construction. A comprehensive literature review was performed in PubMed, CINAHL and Embase, and study protocols were screened. Keywords were assessment, questionnaire, tool, EGFRI, and rash. All items with potential relevance for the tool were selected for further evaluation. Twentyone EGFRI treated patients filled out the draft-questionnaire. Results: The search resulted in a simultaneous tool in the form of 61 PRO, and 50 HPRO items. Both tools assess experienced mcAEs inclusive number of papules and pustules, area involved, severity and duration of the symptoms, used products, effectiveness of various (medical) interventions, treatment adherence and distress from the symptoms. Patient input resulted in the addition of 1 item, modification of 7 items, and deletion of 2 items. Conclusions: A novel tool has been generated to assess the experienced mcAEs and effectiveness of supportive care interventions. Since the patient and the provider report mcAEs simultaneously, the provided data are directly comparable, facilitating assessment of quality of life and, therefore, improving quality of medical care.

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