scholarly journals Long-term health-related quality of life and burden of disease after intensive care: Development of a patient-reported outcome measure.

2021 ◽  
Author(s):  
Johan A Malmgren ◽  
Ann-Charlotte Waldenström ◽  
Christian Rylander ◽  
Elias Johannesson ◽  
Stefan Lundin
Keyword(s):  
Quality Of Life ◽  
Burden Of Disease ◽  
Control Group ◽  
Health Related Quality ◽  
Icu Discharge ◽  
Wide Range ◽  
Related Quality ◽  
Health Related

Abstract BackgroundICU survivorship includes a diverse burden of disease. Current questionnaires used for collecting information about health-related problems and their relation to quality of life lack detailed questions in several areas relevant to ICU survivors. Our aim was to construct a provisional questionnaire on health-related issues based on interviews with ICU survivors and to test if this questionnaire was able to show differences between ICU survivors and a control group.MethodsThirty-two ICU survivors were identified at a post-ICU clinic and interviewed at least six months after ICU discharge. Using an established qualitative methodology from oncology, all dysfunctions and disabilities were extracted, rephrased as questions and compiled into a provisional questionnaire. In a second part, this questionnaire was tested on ICU survivors and controls. Inclusion criteria for the ICU survivors were ICU stay at least 72 hours with ICU discharge six months to three years prior to the study. A non-ICU treated control group was obtained from the Swedish Population Register, matched for age and sex. Eligible participants received an invitation letter and were contacted by phone. If willing to participate, they were sent the questionnaire. Descriptive statistics were applied.ResultsAnalysis of the interviews yielded 238 questions in 13 domains: cognition, fatigue, physical health, pain, psychological health, activities of daily life, sleep, appetite and alcohol, sexual health, sensory functions, gastrointestinal functions, urinary functions and work life.In the second part, 395 of 518 ICU survivors and 197 of 231 controls returned a completed questionnaire, the response rates being 76.2% and 85.3% respectively. The two groups differed significantly in 13 of 22 comorbidities. ICU survivors differed in a majority of questions (p ≤ 0.05) distributed over all 13 domains compared with controls.ConclusionsThis study describes the development of a provisional questionnaire to identify health-related quality of life issues and long-term burden of disease after intensive care.The questionnaire was answered by 395 ICU survivors. The questionnaire could identify that they experience severe difficulties in a wide range of domains compared with a control group.Trial registrationClinicalTrials.gov Ref# NCT 02767180

scholarly journals Long-term health-related quality of life and burden of disease after intensive care: development of a patient-reported outcome measure

Critical Care ◽  
2021 ◽  
Vol 25 (1) ◽  
Author(s):  
Johan Malmgren ◽  
Ann-Charlotte Waldenström ◽  
Christian Rylander ◽  
Elias Johannesson ◽  
Stefan Lundin
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
Burden Of Disease ◽  
Control Group ◽  
Health Related Quality ◽  
Icu Discharge ◽  
Related Quality ◽  
Health Related

Abstract Background ICU survivorship includes a diverse burden of disease. Current questionnaires used for collecting information about health-related problems and their relation to quality of life lack detailed questions in several areas relevant to ICU survivors. Our aim was to construct a provisional questionnaire on health-related issues based on interviews with ICU survivors and to test if this questionnaire was able to show differences between ICU survivors and a control group. Methods Thirty-two ICU survivors were identified at a post-ICU clinic and interviewed at least six months after ICU discharge. Using an established qualitative methodology from oncology, all dysfunctions and disabilities were extracted, rephrased as questions and compiled into a provisional questionnaire. In a second part, this questionnaire was tested on ICU survivors and controls. Inclusion criteria for the ICU survivors were ICU stay at least 72 h with ICU discharge six months to three years prior to the study. A non-ICU-treated control group was obtained from the Swedish Population Register, matched for age and sex. Eligible participants received an invitation letter and were contacted by phone. If willing to participate, they were sent the questionnaire. Descriptive statistics were applied. Results Analysis of the interviews yielded 238 questions in 13 domains: cognition, fatigue, physical health, pain, psychological health, activities of daily living, sleep, appetite and alcohol, sexual health, sensory functions, gastrointestinal functions, urinary functions and work life. In the second part, 395 of 518 ICU survivors and 197 of 231 controls returned a completed questionnaire, the response rates being 76.2% and 85.3%, respectively. The two groups differed significantly in 13 of 22 comorbidities. ICU survivors differed in a majority of questions (p ≤ 0.05) distributed over all 13 domains compared with controls. Conclusions This study describes the development of a provisional questionnaire to identify health-related quality of life issues and long-term burden of disease after intensive care. The questionnaire was answered by 395 ICU survivors. The questionnaire could identify that they experience severe difficulties in a wide range of domains compared with a control group. Trial registry ClinicalTrials.gov Ref# NCT 02767180

scholarly journals Long-term Health-related Quality of Life and Burden of Disease After Intensive Care: Development of a Patient-reported Outcome Measure.

2020 ◽  
Author(s):  
Johan A Malmgren ◽  
Ann-Charlotte Waldenström ◽  
Christian Rylander ◽  
Elias Johannesson ◽  
Stefan Lundin
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
Burden Of Disease ◽  
Health Related Quality ◽  
Icu Discharge ◽  
Related Quality ◽  
Health Related ◽  
The Right

Abstract BackgroundICU survivorship includes a diverse burden of disease. To understand the extent of the problems, the right issues must be identified, and the right questions need to be asked to the patients. Current follow-up instruments lack detailed questions in several areas relevant to survivors. Our aim was to identify health-related problems relevant and unique to ICU survivors, and to construct a comprehensive questionnaire able to address these issues.Methods Thirty-three ICU survivors were interviewed at least six months after ICU discharge. All types of everyday dysfunctions and disabilities were extracted and compiled into a questionnaire. The questionnaire was tested on ICU survivors and non-ICU treated subjects. Inclusion criteria for the ICU survivors were an ICU stay of at least 72 hours with the ICU discharge six months to three years prior to the study. The non-ICU treated subjects were obtained from the Swedish Population Register, matched for age and sex. Eligible participants received an invitation letter and were contacted by phone. If willing to participate, they were sent the questionnaire. ResultsAnalysis of the interviews yielded 238 questions in 13 domains: cognition, fatigue, physical health, pain, psychological health, activities of daily life, sleep, appetite and alcohol, sexual health, sensory functions, gastrointestinal, urinary tract and work life.In total, 395 of 518 ICU survivors and 197 of 231 non-ICU treated subjects returned a completed questionnaire, the response rate being 76.2% and 85.3% respectively. The two groups differed significantly in 16 of 25 comorbidities. ICU survivors differed in a majority of questions (p ≤ 0.05) compared to non-ICU treated subjects, distributed over all 13 domains. ConclusionsThis study describes the first step in developing a designated questionnaire for identification of health-related quality of life issues and long-term burden of disease after intensive care. A first version of the questionnaire was answered by 395 ICU survivors. The questionnaire could identify that they experience severe difficulties in a wide range of domains compared to non-ICU treated subjects.Trial registrationClinicalTrials.gov Ref# NCT 02767180

scholarly journals Health-related quality of life issues, including symptoms, in patients with active COVID-19 or post COVID-19; a systematic literature review

2021 ◽  
Author(s):  
Cecilie Delphin Amdal ◽  
Madeline Pe ◽  
Ragnhild Sørum Falk ◽  
Claire Piccinin ◽  
Andrew Bottomley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Data Extraction ◽  
Health Related Quality ◽  
Psychological Issues ◽  
Wide Range ◽  
Related Quality ◽  
Health Related

Abstract Purpose This systematic review was performed to identify all relevant health-related quality of life (HRQoL) issues associated with COVID-19. Methods A systematic literature search was undertaken in April 2020. In four teams of three reviewers each, all abstracts were independently reviewed for inclusion by two reviewers. Using a pre-defined checklist of 93 criteria for each publication, data extraction was performed independently by two reviewers and subsequently compared and discussed. If necessary, a third reviewer resolved any discrepancies. The search was updated in February 2021 to retrieve new publications on HRQoL issues including issues related to the long-term consequences of COVID-19. Results The search in April 2020 identified 3342 potentially relevant publications, and 339 publications were selected for full-text review and data extraction. We identified 75 distinct symptoms and other HRQoL issues categorized into 12 thematic areas; from general symptoms such as fever, myalgia, and fatigue, to neurological and psychological issues. The updated search revealed three extra issues experienced during active disease and long-term problems with fatigue, psychological issues and impaired cognitive function. Conclusion This first comprehensive systematic review provides a detailed overview of the wide range of HRQoL issues experienced by patients with COVID-19 throughout the course of the disease. It demonstrates the devastating impact of the disease and provides critically important information for clinicians, to enable them to better recognize the disease and to provide knowledge important for treatment and follow-up. The results provided the foundation for the international development of a COVID-19 specific patient-reported HRQoL questionnaire.

Long-term health related quality of life in patients with sepsis after intensive care stay: A systematic review

2017 ◽  
Vol 16 (4) ◽  
pp. 164-169
Author(s):  
Nadia Alam ◽  
◽  
RS Nannan Panday ◽  
JR Heijnen ◽  
LS van Galen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
Bibliographic Databases ◽  
Health Related Quality ◽  
Icu Discharge ◽  
Related Quality ◽  
Health Related ◽  
Sepsis Survivors

Sepsis is a major health care issue and sepsis survivors are often confronted with long-term complications after admission to the intensive care unit (ICU) which may negatively influence their health related quality of life (HRQOL). This study aimed to systematically evaluate the outcome in terms of HRQOL in patients with sepsis after ICU discharge. A literature search was conducted in the bibliographic databases PubMed, EMBASE, and CINAHL, including reference lists of published guidelines, reviews and associated articles. Sixteen studies were included, thirteen (81.3%) reported that sepsis survivors suffer from impaired HRQOL in physical and mental domains which persist from months to years after a sepsis episode. More focus on improving long-term outcomes for patients surviving sepsis and the ICU is needed.

scholarly journals Dance Fitness Classes Improve the Health-Related Quality of Life in Sedentary Women

2020 ◽  
Vol 17 (11) ◽  
pp. 3771 ◽  
Author(s):  
Yaira Barranco-Ruiz ◽  
Susana Paz-Viteri ◽  
Emilio Villa-González
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Control Group ◽  
Health Related Quality ◽  
Middle Aged ◽  
Post Intervention ◽  
Wide Range ◽  
Related Quality ◽  
Health Related

Introduction: This study aims to analyze the effect of two dance-focused and choreographic fitness classes on Health-Related Quality of Life (HRQoL) in sedentary worker women. Methods: 65 sedentary middle-aged worker women (38 ± 7.3 years old) completed a 16-week intervention randomly assigned to: (1) dance fitness group based on Zumba Fitness classes (DF group, n = 25)], (2) dance fitness + functional strength training group (DFFT group, n = 20), and (3) control group (n = 20). HRQoL was assessed by the 36-Item Short-Form Health-Survey (SF-36), which evaluates 8 dimensions of health [General Health (GH), Physical Functioning (PF), Social Functioning (SF), Physical Role (PR), Emotional Role (ER), Bodily Pain (BP), Vitality (V), and Mental Health (MH)] scored from 0 (worst) to 100 (best health status). Results: The control group statistically differed from both exercise groups in PF and PR, and from the DF group in SF and MH showing a lower score. No statistical differences were observed between exercise groups post-intervention, except in V. DF group showed increases in GH, PF, SF, V, PR, and MH post-intervention. Conclusions: A 16-week dance fitness intervention based on Zumba Fitness classes generates notable improvements in a wide range of HRQoL dimensions in sedentary middle-aged worker women, especially in V, PR and MH dimensions.

scholarly journals The impact of lymphedema on health-related quality of life up to 10 years after breast cancer treatment

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Mads G. Jørgensen ◽  
Navid M. Toyserkani ◽  
Frederik G. Hansen ◽  
Anette Bygum ◽  
Jens A. Sørensen
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Treatment ◽  
Breast Cancer Treatment ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractThe impact of breast cancer-related lymphedema (BCRL) on long-term quality of life is unknown. The aim of this study was to investigate the impact of BCRL on health-related quality of life (HRQoL) up to 10 years after breast cancer treatment. This regional population-based study enrolled patients treated for breast cancer with axillary lymph node dissection between January 1st 2007 and December 31th 2017. Follow up and assessments of the included patients were conducted between January 2019 and May 2020. The study outcome was HRQoL, evaluated with the Lymphedema Functioning, Disability and Health Questionnaire, the Disabilities of the Arm, Shoulder and Hand Questionnaire and the Short Form (36) Health Survey Questionnaire. Multivariate linear logistic regression models adjusted for confounders provided mean score differences (MDs) with 95% confidence intervals in each HRQoL scale and item. This study enrolled 244 patients with BCRL and 823 patients without BCRL. Patients with BCRL had significantly poorer HRQoL than patients without BCRL in 16 out of 18 HRQoL subscales, for example, in physical function (MDs 27, 95%CI: 24; 30), mental health (MDs 24, 95%CI: 21; 27) and social role functioning (MDs 20, 95%CI: 17; 23). Age, BMI, BCRL severity, hand and dominant arm affection had only minor impact on HRQoL (MDs < 5), suggesting a high degree of inter-individual variation in coping with lymphedema. This study showed that BCRL is associated with long-term impairments in HRQoL, especially affecting the physical and psychosocial domains. Surprisingly, BCRL diagnosis rather than clinical severity drove the largest impairments in HRQoL.

Oral Health-Related Quality of Life Among Sudanese Children Treated for Cleft Lip and Palate

2021 ◽  
pp. 105566562098769
Author(s):  
Mecheala Abbas Ali ◽  
Alwaleed Fadul Nasir ◽  
Shaza K. Abass
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Control Group ◽  
Arabic Version ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Objective: This study compared the oral health-related quality of life (OHRQoL) among children with a cleft lip with or without a cleft palate (CL±P) and a group of their peers. The reliability of the Arabic version of the Child Oral Health Impact Profile Questionnaire (COHIP) was also assessed. Design: A cross-sectional study. Settings: Cleft clinic in a private dental college in Omdurman City, Sudan. Patients: In all, 75 children (mean age 11.3 ± 2.5 years) with a history of CL±P and a group of 150 school children without CL±P (mean age 11.4 ± 2.6 years). Main Outcome Measures: Overall and subscale scores on the Arabic version of the COHIP. Results: Test–retest reliability of COHIP in Arabic was high with an interclass correlation coefficient >0.8. Cronbach α value internal consistency was 0.8 for the total scale and between 0.7 and 0.8 for the subscales. The COHIP score was 89.41 ± 19.97 in children with CL±P and 122.82 ± 9.45 for the control group. Children with CL±P had significantly lower scores on the overall and all subscales when compared to children without CL±P ( P ≤ .001). Among the children with CL±P, there were no statistically significant differences on the COHIP based on age and/or gender ( P ≥ .05). Conclusions: Children with CL±P had a relatively high OHRQoL, which was lower than that of their peers without CL±P in both the overall scale and all subscales. Gender and age differences had no significant impact on the OHRQoL. The COHIP Arabic version showed appropriate reliability.

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