Impact of Completing CLEFT-Q Scales That Ask About Appearance on Children and Young Adults: An International Study

2020 ◽  
Vol 57 (7) ◽  
pp. 840-848
Author(s):  
Anne F. Klassen ◽  
Louise Dalton ◽  
Timothy E. E. Goodacre ◽  
Karen E. Harman ◽  
Rona Slator ◽  
...  
Keyword(s):  
Cleft Lip ◽  
Outcome Measure ◽  
Negative Impact ◽  
International Study ◽  
Female Gender ◽  
Patient Reported Outcome ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Patient Reported ◽  
The Impact

Objective: To describe the impact of completing the CLEFT-Q appearance scales on patients with cleft lip and/or palate and to identify demographic and clinical characteristics and CLEFT-Q scores associated with reporting a negative impact. Design: International cross-sectional survey. Setting: Recruitment took place between October 2014 and November 2016 at 30 craniofacial clinics located in 12 countries. Patients: Aged 8 to 29 years with cleft lip and/or palate. Main Outcome Measure(s): Participants were asked 4 questions to evaluate the impact of completing the field test version of a patient-reported outcome measure (the CLEFT-Q) that included 154 items, of which 79 (51%) asked about appearance (of the face, nose, nostrils, teeth, lips, jaws, and cleft lip scar). Results: The sample included 2056 participants. Most participants liked answering the CLEFT-Q (88%) and the appearance questions (82%). After completing the appearance scales, most participants (77%) did not feel upset or unhappy about how they look, and they felt the same (67%) or better (23%) about their appearance after completing the questionnaire. Demographic and clinical variables associated with feeling unhappy/upset or worse about how they look included country of residence, female gender, more severe cleft, anticipating future cleft-specific surgeries, and reporting lower (ie, worse) scores on CLEFT-Q appearance and health-related quality-of-life scales. Conclusion: Most participants liked completing the CLEFT-Q, but a small minority reported a negative impact. When used in clinical practice, CLEFT-Q scale scores should be examined as soon as possible after completion in order that the clinical team might identify patients who might require additional support.

scholarly journals Comparison of Corresponding Scores From the Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q in Swedish Patients With Cleft Lip and/or Palate

2020 ◽  
pp. 105566562096412
Author(s):  
Mia Stiernman ◽  
Kristina Klintö ◽  
Martin Persson ◽  
Magnus Becker
Keyword(s):  
Health Care Professionals ◽  
Cleft Lip ◽  
Outcome Measure ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
University Hospital ◽  
Cross Sectional ◽  
Specific Patient ◽  
Patient Reported ◽  
Patient Opinion

Objective: The primary aim of this study was to compare corresponding scores between 2 existing cleft-specific patient-reported outcome measures (PROMs)—Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q. The second aim of the study was to investigate patient opinion on the 2 PROMs. Design: Cross-sectional questionnaire study. Setting: Participants were recruited from a University Hospital. They answered CHASQ and CLEFT-Q either in the hospital or at home. Participants: Thirty-three participants with cleft lip and/or palate, aged 10 to 19 years. Main Outcome Measure: CHASQ and CLEFT-Q. Results: The CHASQ scores and the corresponding CLEFT-Q scores on appearance correlated significantly. Corresponding scores regarding speech did not correlate significantly. A majority, 15 (58%) participants, answered that they liked CLEFT-Q more than CHASQ, 18 participants (69%) thought CHASQ was easier to complete, and 19 (76%) thought CLEFT-Q would better inform health care professionals. Conclusion: Both instruments showed strengths and limitations. Clinicians will have to consider each instrument’s respective qualities when choosing to implement either PROM.

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

2021 ◽  
pp. 105566562110628
Author(s):  
Anna Miroshnychenko ◽  
Charlene Rae ◽  
Karen Wong Riff ◽  
Christopher Forrest ◽  
Tim Goodacre ◽  
...  
Keyword(s):  
Construct Validity ◽  
Cleft Lip ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
A Prospective Study

Objective 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. Design Construct validity was assessed through a prospective study that tested hypotheses regarding correlations of scores with other PROMs that measure related constructs. Setting Seven cleft centres in Canada, the USA, and UK were involved. Patients/Participants Patients were aged eight to 29 years with CL/P. Interventions 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). Main Outcome Measure(s) 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. Results 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. Conclusions Cross-sectional construct validity of the CLEFT-Q scales adds further evidence of the psychometric properties of this instrument.

Understanding the Impact of Bullying in a Unionized U.S. Public Sector Workforce

2019 ◽  
Vol 68 (3) ◽  
pp. 139-153 ◽  
Author(s):  
Mazen El Ghaziri ◽  
Shellie Simons ◽  
Jane Lipscomb ◽  
Carla L. Storr ◽  
Kathleen McPhaul ◽  
...  
Keyword(s):  
Public Sector ◽  
Organizational Climate ◽  
Negative Impact ◽  
Multinomial Logistic Regression ◽  
Female Gender ◽  
Bargaining Unit ◽  
Organizational Level ◽  
Organizational Impact ◽  
Cross Sectional ◽  
The Impact

Background: Workplace Bullying (WPB) can have a tremendous, negative impact on the victims and the organization as a whole. The purpose of this study was to examine individual and organizational impact associated with exposure to bullying in a large U.S. unionized public sector workforce. Methods: A cross-sectional Web-based survey was conducted among 16,492 U.S. state government workers. Survey domains included demographics, negative acts (NAs) and bullying, supportiveness of the organizational climate, and individual and organizational impacts of bullying. Multinomial logistic regression was used to assess the impact among respondents who reported exposure to bullying. Findings: A total of 72% participants responded to the survey (n = 11,874), with 43.7% (n = 5,181) reporting exposure to NAs and bullying. A total of 40% (n = 4,711) participants who experienced WPB reported individual impact(s) while 42% ( n = 4,969) reported organization impact(s). Regular NA was associated with high individual impact (negatively impacted them personally; odds ratio [OR] = 5.03) when controlling for other covariates including: female gender (OR =1.89) and job tenure of 6 to 10 years (OR = 1.95); working in a supportive organizational climate and membership in a supportive bargaining unit were protective of high impact (OR = 0.04 and OR = 0.59, respectively). High organizational impact (transferring to another position) was associated with regular NA and bullying (OR = 16.26), female gender (OR = 1.55), providing health care and field service (OR = 1.68), and protective effect of organizational climate (OR = 0.39). We found a dose-response relationship between bullying and both individual and organizational-level impact. Conclusion/Application to Practice: Understanding the impacts of WPB should serve to motivate more workplaces and unions to implement effective interventions to ameliorate the problem by enhancing the organizational climate, as well as management and employee training on the nature of WPB and guidance on reporting.

scholarly journals Development of a patient-reported outcome measure for neck pain in military aircrew: qualitative interviews to inform design and content

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e039488
Author(s):  
Anna Dowling ◽  
Ellen Slungaard ◽  
Nicola R Heneghan
Keyword(s):  
Neck Pain ◽  
Outcome Measure ◽  
Physical Symptoms ◽  
Patient Reported Outcome ◽  
Direct Access ◽  
Specific Patient ◽  
Concept Elicitation ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
The Impact

IntroductionThe prevalence of flight-related neck pain is 70% in UK fast jet pilots; much higher than the general population. The Aircrew Conditioning Programme and direct access physiotherapy exist to minimise the impact on military capability, but a population specific patient-reported outcome measure (PROM) is required to investigate the effectiveness of these. We aimed to explore the experiences of flight-related neck pain to inform the content validity and development of a population specific PROM.MethodsQualitative semistructured interviews combining phenomenological and grounded theory methods, reported using Consolidated criteria for Reporting Qualitative research guidelines. A purposive sample of 10 fast jet pilots with neck pain was recruited. Concept elicitation interviews were audio recorded, transcribed verbatim along with field notes. Data analysis involved subject and methodological expertise used a concept elicitation approach.ResultsParticipants included 10 male fast jet pilots, age 34.7 years. Identified themes included: (1) physical symptoms associated with flying activities; (2) occupational effects revealed modifications of flying, or ‘suboptimal’ performance owing to neck pain; (3) psychological effects revealed feelings or worry and (4) social and activity effects showed impact on out of work time.ConclusionPopulation-specific occupational, psychological and social factors should be considered alongside physical symptoms when managing neck pain in military aircrew. Findings support the development of a PROM specifically designed for military aircrew with neck pain.

Correlation between nasal mucosal temperature change and the perception of nasal patency: a literature review

2021 ◽  
Vol 135 (2) ◽  
pp. 104-109
Author(s):  
R Tjahjono ◽  
N Singh
Keyword(s):  
Temperature Change ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Subjective Perception ◽  
Nasal Patency ◽  
Patient Reported Outcome Measure ◽  
Physical Measurements ◽  
Pubmed Database ◽  
Patient Reported ◽  
The Impact

AbstractBackgroundThe mechanism of nasal airflow sensation is poorly understood. This study aimed to examine the role of nasal mucosal temperature change in the subjective perception of nasal patency and the methods by which it can be quantified.MethodMedline and PubMed database searches were performed to retrieve literature relevant to the topic.ResultsThe primary mechanism producing the sensation of nasal patency is thought to be the activation of transient receptor potential melastatin family member 8 (‘TRPM8’), a thermoreceptor that is activated by nasal mucosal cooling. Computational fluid dynamics studies have demonstrated that increased airflow and heat flux are correlated with better patient-reported outcome measure scores. Similarly, physical measurements of the nasal cavity using temperature probes have shown a correlation between lower nasal mucosal temperatures and better patient-reported outcome measure scores.ConclusionNasal mucosal temperature change may be correlated with the perception of improved nasal patency. Future research should quantify the impact of mucosal cooling on the perception of nasal airway obstruction.

Quality of Life in People Living With HIV: An Exploratory Cross-Sectional Survey in Belgium

2021 ◽  
Vol 33 (3) ◽  
pp. 249-264
Author(s):  
Gert Scheerder ◽  
Sandra Van den Eynde ◽  
Patrick Reyntiens ◽  
Ria Koeck ◽  
Jessika Deblonde ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Sexual Life ◽  
People Living With Hiv ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Related Stigma ◽  
Living With Hiv ◽  
The Impact

This cross-sectional survey explored the quality of life in 505 people living with HIV in Belgium. Several domains of quality of life were impaired: 26% had been diagnosed with depression and 43% had weak social support. HIV-related stigma is still widespread, with 49% believing most people with HIV are rejected and 65% having experienced discrimination due to HIV. The impact of HIV was limited on professional life, but 40% experienced a negative impact on life satisfaction and 41% a negative impact on sexual life. For several domains, people with a recent diagnosis of HIV and long-term survivors had significantly worse scores. This survey also uncovered strengths of people living with HIV, such as positive coping and HIV self-image. Expanding the scope of quality of life in people living with HIV may provide a more complete picture of relevant life domains that may be impacted by living with HIV, but this needs further validation.

scholarly journals Alcohol-related harm to others in England: a cross-sectional analysis of national survey data

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e021046 ◽  
Author(s):  
Caryl Beynon ◽  
David Bayliss ◽  
Jenny Mason ◽  
Kate Sweeney ◽  
Clare Perkins ◽  
...  
Keyword(s):  
Negative Impact ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
Harm To Others ◽  
Using Data ◽  
Socioeconomic And Demographic Factors ◽  
The Impact ◽  
Alcohol Related Harm ◽  
Related Harm

ObjectivesTo estimate the prevalence, the frequency and the perpetrators of alcohol-related harm to others (AHTO) and identify factors associated with experiencing harm and aggressive harm.DesignCross-sectional survey.SettingEngland.ParticipantsAdults (general population) aged 16 and over.Outcome measuresPercentage of respondents who experienced harm. Socioeconomic and demographic factors associated with the outcomes. Outcomes were (1) experienced harm/did not experience harm and (2) experienced aggressive harm (physically threatened, physically hurt and forced/pressured into something sexual)/did not experience an aggressive harm (no aggressive harm plus no harm at all).ResultsData to support a response rate calculation were not collected; 96.3% of people surveyed completed the AHTO questions. The weighted sample was 4874; 20.1% (95% CI 18.9 to 21.4, N=980) reported experiencing harm in the previous 12 months and 4.6% (95% CI 4.0 to 5.4, N=225) reported experiencing an aggressive harm. Friends and strangers were the dominant perpetrators. Most harms (74.8%) occurred less than monthly. Factors associated with experiencing harm were: younger age (p<0.001), drinking harmfully/hazardously (p<0.001), white British (p<0.001 compared to other white groups and Asian groups and p=0.017 compared to black groups), having a disability (p<0.001), being educated (p<0.001 compared to no education) and living in private rented accommodation (p=0.004 compared with owned outright). Being in the family stage of life (defined as having children in the household) had significantly lower odds of harm (p=0.006 compared to being single), as did being retired (p<0.001 compared to being employed). Factors associated with experiencing an aggressive harm were similar.ConclusionsThis exploratory study, using data collected through the Alcohol Toolkit Survey, shows that AHTO affects 20.1% of the population of England. Even apparently minor harms, like being kept awake, can have a negative impact on health, while aggressive harms are clearly of concern. Using a standard methodology to measure harm across studies would be advantageous. Policies that focus on alcohol must take into consideration the impact of drinking on those other than the drinker.

Impact of skeletal related events (SREs) on health-related quality of life (HRQoL) and healthcare resource utilization (HRU) in prostate cancer patients with bone metastases (BM).

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e16046-e16046
Author(s):  
Jorge Arellano ◽  
Kristina S Chen ◽  
Carolyn Atchison ◽  
Alex Rider ◽  
Andrew Worsfold ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Cancer Patients ◽  
Negative Impact ◽  
Underlying Disease ◽  
Cord Compression ◽  
Healthcare Resource Utilization ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Cancer Disease ◽  
The Impact

e16046 Background: Advanced prostate cancer often leads to the development of BM and as a result SREs. Treatment and management of SREs, as well as the underlying disease, influences the patient’s HRQoL and HRU. We evaluated the impact of SREs on HRQoL (FACT-P) and HRU in patients with BM. Methods: Data were extracted from the Adelphi Prostate Cancer Disease-Specific Programme (DSP), a cross-sectional survey of 150 urologists and oncologists and their prostate cancer patients conducted from March to June 2012 in the US. Each specialist completed comprehensive record forms on 12 of their patients being treated for prostate cancer. Patients were invited to complete a questionnaire, which included the FACT-P HRQoL instrument. Patients were stratified by SRE experience to assess the impact of SRE on patients with BM. SRE was defined as an event of bone radiation, bone surgery, fracture, or spinal cord compression. Results: Data were collected from 1,749 prostate cancer patients, of which 941 were identified with BM; SRE status was recorded in 499 BM patients (Table). HRQoL was significantly lower in patients experiencing SREs, while the rate of consultations and likelihood of being hospitalized was significantly higher. Conclusions: SREs result in a significant economic burden on the healthcare system and negative impact on HRQoL in prostate cancer patients with BM. [Table: see text]

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