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Development and psychometric evaluation of the U.S. English Wound-QoL questionnaire to assess health-related quality of life in people with chronic wounds

R.Sommer1, C. C. von Stülpnagel1, C. E. Fife2,3, M. Blasingame3, M. J. Anders4, D. Thompson4, M. Augustin1, N. da Silva1, C. Blome1

1German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg- Eppendorf (UKE), Hamburg, Germany

2Baylor College of Medicine, Houston, Texas, USA

3The U.S. Wound Registry , The Woodlands, Texas, USA

4CHI St. Luke's Wound Clinic , The Woodlands, Texas, USA

Wound Repair Regen. 2020 Sep;28(5):609-616

 

People with chronic wounds perceive an impaired health-related quality of life (HRQoL). For the assessment of HRQoL, valid instruments are needed. Therefore, the Wound-QoL questionnaire was originally developed and psychometrically validated for use in Ger- many. As the Wound-QoL is to be used in numerous countries, international versions are required. Therefore, this study aimed to psychometrically validate the U.S. English Wound-QoL version. Upon translation into U.S. English, psychometric testing was per- formed based on cross-sectional data deriving from the U.S. Wound Registry.

PMID:
33372379
DOI:
10.1111/wrr.12837

The Applicability of the “Revised Burden Measure” in Pediatric Settings: Measuring Parents’ Caregiving Burdens and Uplifts

N. Silva1,2, M. Pereira1, M. C. Canavarro1, R. Montgomery3, C. Carona1,4

1University of Coimbra, Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Educational Sciences, Coimbra, Portugal

2Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

3Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee, Milwaukee, WI, USA

4Cerebral Palsy Association of Coimbra, Coimbra, Portugal

J Child Fam Stud 2020; 29: 3302-3316

 

In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the “Revised Burden Measure” in a sample of parents of children with and without chronic health conditions. The “Revised Burden Measure” and self-reported measures of quality of life and mental health were administered to a sample of parents who had children with (n=277) or without (n=117) chronic health conditions.

DOI:
10.1007/s10826-020-01832-z

Portuguese Version of the DISABKIDS Diabetes Module

N. da Silva1

1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

Central Eur J Paed 2020; 16 (1): 90-92

 

The DISABKIDS questionnaires (1) were devel- oped in 2006 simultaneously in seven European countries, namely Germany, the Netherlands, United Kingdom, France, Greece, Sweden and Austria. They include a set of developmentally ap- propriate and cross-culturally comparable ques- tionnaires for assessing health-related quality of life (HrQoL) in children/adolescents between 8 and 18 years of age.

DOI:
10.5457/p2005-114.261

A systematic review on quality of life assessment in adults with cerebral palsy: challenging issues and a call for research.

A.C. Alves-Nogueira1, N. Silva2, H. McConachie3, C. Carona4

1Cerebral Palsy Association of Coimbra, Portugal

2Faculty of Psychology and Education Sciences, University of Coimbra, Portugal

3Institute of Health and Society, Newcastle University, United Kingdom

Res Dev Disabil. 2020;96:103514

 

Little is known about the quality of life (QoL) of adults with cerebral palsy (CP). This systematic review aimed to examine the extent to which methodological best practices have been applied to achieve valid and informative QoL assessments for this population.

PMID:
31706133
DOI:
10.1016/j.ridd.2019.103514

Nice Kids, Healthy Kids? Prosocial Behavior, Psychological Problems and Quality of Life in Children, Preadolescents, and Adolescents with and without Chronic Health Conditions

C. Carona1,2, C. Vitorino1, A. C. Alves-Nogueira1, H. Moreira2, M. Cristina Canavarro2, N. da Silva2

1Cerebral Palsy Association of Coimbra, Coimbra, Portugal

2Center for Research in Neuropsychology and Cognitive-Behavioral Intervention, Faculty of Psychology and Education Sciences, University of Coimbra, Portugal

Cent Eur J Paediatr, 16(2), 182-199

 

Objective – First, to compare prosocial behaviors and psychological maladjustment between children, preadolescents and adoles- cents with and without chronic health conditions; and second, to test the direct and indirect effects, via psychological problems, of prosocial behavior on quality of life (QoL). In addition, the invariance of this model was examined across different age groups and health conditions.

DOI:
10.5457/p2005-114.276

Body height or height-related cognitive beliefs: What matters the most for the health-related quality of life of children and adolescents with short stature?

B. Mergulhão, JP. Almeida, H. Moreira, MF. Magalhães, M. Bullinger, MC. Canavarro, N. da Silva (2020, October). 

ePoster presented at ISOQOL 27th Annual Conference [Virtual].

Disease severity and patient needs/benefits in genital psoriasis: Patient-reported improvement after 6±1 months of Apremilast treatment

N. da Silva, R. Sommer, L. Mellars, C. von Stülpnagel, M. Cordey, M. Augustin (2020, October). 

ePoster presented at 29th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

Effects of secukinumab on disease burden, patient needs and benefits, and treatment satisfaction in patients with plaque psoriasis across European regions: Patient’s perspective data from the PROSE study

N. da Silva, R. Sommer, C-E. Ortmann, P. Jagiello, T. Bachhuber, M. Augustin (2020, October). 

ePoster presented at 29th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

Psychological (co)morbidity in patients with and without anogenital psoriasis and chronic pruritus: Associations between disease/ treatment burden and clinically significant symptoms of depression and anxiety

N. da Silva, M. Augustin, C. Hilbring, C. von Stülpnagel, R. Sommer (2020, October).

ePoster presented at 29th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

Patient-physician (dis)agreement on their reports of body surface area affected by psoriasis: Associations with disease burden and patient-defined treatment benefits

N. da Silva, M. Augustin, C. Hilbring, C. von Stülpnagel, R. Sommer (2020, October).

ePoster presented at 29th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

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