scholarly journals Patient and Parent Reported Psychosocial Concerns in Children and Adolescents With Turner syndrome

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. A800-A800
Author(s):  
Fiona Fimmel ◽  
Lauren E Clary ◽  
Roopa Kanakatti Shankar
Keyword(s):  
Turner Syndrome ◽  
Peer Relationships ◽  
Estrogen Therapy ◽  
Measurement Information ◽  
Peer Relationship ◽  
Internal Reliability ◽  
Short Forms ◽  
Number Of Patients ◽  
Psychosocial Concerns ◽  
Patient Reported

Abstract Background: Pediatric patients with Turner syndrome (TS) are reported to have a higher incidence of anxiety, depression and social isolation but there is minimal data on self-reported measures. Methods: We utilized the validated PROMIS (Patient Reported Outcomes Measurement Information System) question bank to develop 4-question short forms to assess patient and parent self-reported scores in the domains of depression, anxiety, and peer relationships in our TS cohort. Completed PROMIS short forms from TS patients seen in the multidisciplinary TS clinic between 1/1/2019 and 6/1/2020 were retrospectively analyzed. Clinical data were also abstracted from medical records and correlated with the measures of depression, anxiety, and peer relationships. Descriptive analyses of the T-scores were completed using a non-parametric Wilcoxon rank-sum test and the dyad results were analyzed for agreement between parent and patient reporting. Results: Data from 26 patients (mean age 13y, range 4.6-20.6y) were included in the analysis: 3.9% were clinically referred for depression/anxiety after psychology assessment, 15% had developmental delays and 15% had an individualized education plan. Nearly 77% had short stature (<5%ile), 58% had received growth hormone and 54% were on estrogen therapy. Median scores were not statistically different from population norms for patient (N=22) or parent (N=25) reports in the 3 domains and did not vary by age, estrogen supplementation or stature. Internal reliability of the questionnaires measured by overall Cronbach alpha for each domain were acceptable (0.73-0.93). While parent and patient reported anxiety scores were correlated (R=.452, p=.040.), the depression and peer relationship scores were not correlated. Parent-reported peer relationship scores were negatively correlated with patient-reported anxiety (R=-0.46, p=0.04) and parent reported anxiety (R=-0.43, p=0.04) scores. Parent perceived depression and anxiety measures were also correlated (R=0.77, p< 0.001) as were patient reported scores in these domains (R=0.6, p=0.003). Conclusions: In contrast to existing literature in TS indicating a higher incidence of psychosocial concerns, the patient and parent self-reported scores on depression, anxiety and peer relationship were not statistically different from the population normative data, and parent and patient perceived scores were not correlated in all domains. While the small number of patients in this pilot study may be insufficiently powered to detect a small difference in scores in these domains, the data underscores the need to develop a TS-specific validated psychosocial questionnaire that more adequately assesses the psychosocial concerns in this population.

The Communication Benefits of Participation in Camp Dream. Speak. Live.: An Extension and Replication

2021 ◽  
Vol 42 (02) ◽  
pp. 117-135
Author(s):  
Courtney T. Byrd ◽  
Katherine L. Winters ◽  
Megan Young ◽  
Danielle Werle ◽  
Robyn L. Croft ◽  
...  
Keyword(s):  
Peer Relationships ◽  
Group Treatment ◽  
Short Form ◽  
Kindergarten Children ◽  
Measurement Information ◽  
Psychosocial Needs ◽  
Patient Reported ◽  
Communication Competencies ◽  
Explicit Training ◽  
Parent Proxy

AbstractSchool-based guidelines often require that treatment focuses on minimizing or eliminating stuttered speech. The purpose of this study was to examine the benefits of explicit training in communication competencies to children who stutter without targeting stuttered speech. Thirty-seven children (ages 4–16) completed Camp Dream. Speak. Live., an intensive group treatment program which targets the psychosocial needs and communication of children who stutter. Outcome measures included the Overall Assessment of the Speaker's Experience of Stuttering (OASES), the Communication Attitude Test for Preschool and Kindergarten Children Who Stutter (KiddyCAT), and the Patient Reported Measurement Information System (PROMIS) Pediatric Peer Relationships Short Form (PROMIS Peer Relationships) and Parent Proxy Peer Relationships Short Form (PROMIS Parent Proxy). Pre- and posttreatment public presentations were rated on nine core verbal and nonverbal communication competencies by a neutral observer. Similar to previous studies, participants demonstrated significant improvements in communication attitudes (OASES) and perceived ability to establish peer relationships (PROMIS Peer Relationships), particularly school-aged participants (ages 7–16). Participants also demonstrated significant improvement in eight of the nine communication competencies. Findings suggest that, in addition to the psychosocial gains of programs such as Camp Dream. Speak. Live., children who stutter benefit from explicit training in communication skills, and these gains are not dependent on the presence of stuttered speech.

scholarly journals Performance of Pediatric PROMIS CATs in Children With Upper Extremity Fractures

Hand ◽  
2018 ◽  
Vol 15 (2) ◽  
pp. 194-200 ◽  
Author(s):  
William D. Gerull ◽  
Ugochi C. Okoroafor ◽  
Jason Guattery ◽  
Charles A. Goldfarb ◽  
Lindley B. Wall ◽  
...  
Keyword(s):  
Upper Extremity ◽  
Peer Relationships ◽  
Outcome Measurement ◽  
Pain Interference ◽  
Measurement Information ◽  
Strong Positive Correlation ◽  
Lower Extremity Function ◽  
Positive Correlation ◽  
Patient Reported ◽  
Parent Proxy

Background: This study was designed to quantify the performance of the pediatric Patient-Reported Outcome Measurement Information System (PROMIS) when delivered as part of routine care to children with upper extremity (UE) fractures. Methods: This cross-sectional study analyzed 964 new pediatric patients presenting with an UE fracture. All patients completed PROMIS computer adaptive tests for pain interference, peer relationships, UE function, and mobility domains at clinic registration. PROMIS was completed by parent-proxy (n = 418) for 5- to 7-year-olds and self-reported by 8- to 10-year-olds (n = 546). PROMIS score distributions were defined, and Pearson correlations assessed the interrelation between PROMIS domains. Student’s t tests compared mean PROMIS scores between parent-proxy and self-completion groups. Results: UE scores indicated the greatest average impairment of all PROMIS domains. However, 13% of patients reached the UE score ceiling indicating maximal UE function. UE scores and mobility scores had a strong positive correlation while UE scores had a moderate negative correlation with pain interference. In all patients, peer relationships were, at most, very weakly correlated with any other PROMIS domain. After grouping by fracture type, parent-proxy completion estimated worse UE function, more pain interference, and worse peer relationship. Conclusions: Pediatric PROMIS UE function scores capture impairment from UE fractures but do have a strong positive correlation with pediatric PROMIS Mobility, which assesses lower extremity function. Among children with UE fractures, parent-proxy completion of pediatric PROMIS appears associated with worse scores on most PROMIS domains.

Validity of the PROMIS-29 in a large Australian cohort of patients with systemic sclerosis

2017 ◽  
Vol 2 (3) ◽  
pp. 188-195 ◽  
Author(s):  
Kathleen Morrisroe ◽  
Wendy Stevens ◽  
Molla Huq ◽  
Joanne Sahhar ◽  
Gene-Siew Ngian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Construct Validity ◽  
Short Form ◽  
Good Alternative ◽  
Measurement Information ◽  
Internal Reliability ◽  
Sf 36 ◽  
Patient Reported

Background We aimed to evaluate the construct validity of the Patient-Reported Outcomes Measurement Information System 29 (PROMIS-29) in Australian systemic sclerosis (SSc) patients. Methods SSc patients, identified through the Australian Scleroderma Cohort Study database, completed two quality-of-life instruments concurrently, the PROMIS-29 and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). The construct validity of the PROMIS-29 was assessed by the correlations between the PROMIS-29 and the SF-36 and Health Assessment Questionnaire Disability Index (HAQ-DI). Cronbach's alpha was used to test the internal reliability of all instruments in Australian SSc patients and non-parametric correlation, including Spearman's correlation, was used to test the construct validity of PROMIS-29 against the SF-36 and HAQ-DI. Results A total of 477 completed questionnaires were returned, equating to a response rate of 59.6%. The mean (±SD) age of respondents at the time of the survey was 64.1 (±11.1) years. They were predominantly female (87.4%), with limited disease subtype (lcSSc) (77.8%) and long disease duration from onset of first non-Raynaud's phenomenon symptom at the time of survey (10.9 ± 11.1 years). For the correlation analysis between the PROMIS-29 and the legacy instruments, all Spearman correlation coefficients were in the logical direction and highly significant suggesting that the PROMIS-29 is a good alternative to other validated measures of disease burden. Conclusions Our study indicates that the PROMIS-29 questionnaire is a valid instrument for measuring health-related quality of life in Australian females with lcSSc of long duration.

Construct Validity of DSM-5 Level 2 Assessments (PROMIS Depression, Anxiety, and Anger): Evidence From the MMPI-2-RF

Assessment ◽  
2020 ◽  
pp. 107319112091109
Author(s):  
Anthony M. Tarescavage ◽  
Emma H. Forner ◽  
Yossef Ben-Porath
Keyword(s):  
Construct Validity ◽  
Convergent Validity ◽  
Minnesota Multiphasic Personality Inventory ◽  
Outcome Measurement ◽  
External Validation ◽  
Patient Reported Outcome ◽  
Measurement Information ◽  
Short Forms ◽  
Patient Reported ◽  
Future Revision

The Patient Reported Outcome Measurement Information System (PROMIS) is a NIH-funded measure that has item banks assessing a variety of physical, social, and mental health domains. Short forms from the emotional distress item bank (which includes measures of Depression, Anxiety, and Anger) were included in the Diagnostic and Statistical Manual for Mental Disorders–Fifth edition as emerging measures to be administered at intake to aid diagnosis and throughout treatment to track progress. The purpose of the current study was to further investigate the PROMIS distress item bank’s construct validity using the Minnesota Multiphasic Personality Inventory–2–Restructured Form (MMPI-2-RF). The sample included 344 college students (119 males, 225 females) who were administered the MMPI-2-RF and the PROMIS Anxiety, Anger, and Depression short forms. Zero-order correlations between the PROMIS scales and the Restructured Clinical Scales and Internalizing Specific Problems Scales were examined. Overall, these results suggest that scores from the PROMIS Anxiety, Anger, and Depression scales evidence convergent validity but have problematic construct validity (particularly for Depression). Future revision of the scales should be considered and sufficient external validation evidence should be available for review before psychological assessments are recommended and distributed for widespread clinical use.

scholarly journals #MadelungDeformity: Insights Into a Rare Congenital Difference Using Social Media

Hand ◽  
2021 ◽  
pp. 155894472110541
Author(s):  
Abbas Peymani ◽  
Max M. Lokhorst ◽  
Austin D. Chen ◽  
Chantal M.A.M. van der Horst ◽  
Bernard T. Lee ◽  
...  
Keyword(s):  
Social Media ◽  
Pain Intensity ◽  
Upper Extremity ◽  
Peer Relationships ◽  
Well Being ◽  
Global Perspective ◽  
Pain Interference ◽  
Measurement Information ◽  
Madelung Deformity ◽  
Patient Reported

Background Madelung deformity is a rare congenital hand difference with little known regarding the patient perspective. In this cross-sectional survey study, we harnessed the global reach of social media to understand the clinical spectrum of Madelung deformity and its impact on physical, mental, and social health. Methods A survey was developed based on a previously published protocol and multiple Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. The survey was distributed on several Madelung deformity communities on Facebook and Instagram. T-scores were calculated, interpreted, and compared between patients who underwent surgery and those who did not. Correlations between scores were calculated using the Spearman rank correlation coefficient. Results Mean PROMIS scores for adults were as follows: pain intensity, 4.9 ± 2.8; pain interference, 57.6 ± 10.0; upper extremity, 35.2 ± 8.1; depression, 53.8 ± 11.1; anxiety, 55.4 ± 11.4; and ability to participate in social roles and activities, 42.5 ± 7.7. Mean scores for children were as follows: pain intensity, 5.0 ± 2.8; pain interference, 55.7 ± 11.3; upper extremity function, 24.6 ± 10.4; depressive symptoms, 57.7 ± 11.3; anxiety, 57.3 ± 11.9; and peer relationships, 42.2 ± 10.3. Conclusions Madelung deformity has significant effects on patients’ physical, mental, and social well-being, even after surgical treatment. Using social media, we were able to compensate for Madelung deformity’s rarity by engaging an international audience, demonstrating the feasibility to conduct research through it, and providing a global perspective of the disease entity.

scholarly journals Translation and Cultural Adaptation of adult PROMIS Physical Function Short Forms into Simplified Chinese

2021 ◽  
Author(s):  
Yueshi Huang ◽  
Xiaoju Zhang ◽  
Yang Yang ◽  
Tingting Cai ◽  
Wen Zhang ◽  
...  
Keyword(s):  
Physical Function ◽  
Cultural Adaptation ◽  
Patient Reported Outcomes ◽  
Measurement Information ◽  
Linguistic Validation ◽  
Outcomes Measurement ◽  
Short Forms ◽  
Simplified Chinese ◽  
Patient Reported ◽  
Measurement Information System

Abstract Background: The Patient-Reported Outcomes Measurement Information System (PROMIS) has been proven to be an effective and efficient measurement tool and has entered its global promotion phase. Our research team was authorized by the PROMIS Health Organization to translate five adult Patient-Reported Outcomes Measurement Information System (PROMIS) physical function short forms (4a, 6b, 8b, 8c, and 8c 7-Day) to ensure the conceptual and semantical equivalence to the source and pretest them in a Chinese population for cultural adaptation.Methods: The translation was conducted following the Functional Assessment of Chronic Illness Therapy (FACIT) methodology, which mainly includes forward translation, reconciliation, back-translation, expert reviews, cognitive testing, and linguistic validation, etc. And cognitive interview was used to pretest the translated items in Chinese patients with cancer and a healthy population.Results: The translation process was relatively smooth, except for some translated versions that slightly altered some word choices or sentence structures. Subsequent pre-testing of the Simplified Chinese short forms showed that clarifying or laying emphasis on the time frame in the instructions was needful, and two sets of response categories and one item stem needed some slight revisions due to cultural or language discrepancies.Conclusion: The translation and linguistic validation of five adult PROMIS physical function short forms into Simplified Chinese have been completed, and field testing, calibration, and psychometric testing are pending.

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