scholarly journals Quality of life in patients with intracranial tumors: does tumor laterality matter?

2016 ◽  
Vol 125 (6) ◽  
pp. 1400-1407 ◽  
Author(s):  
Christina Drewes ◽  
Lisa Millgård Sagberg ◽  
Asgeir Store Jakola ◽  
Ole Solheim
Keyword(s):  
Quality Of Life ◽  
Cerebral Hemisphere ◽  
Intracranial Tumors ◽  
Cross Sectional ◽  
Primary Surgery ◽  
Generic Hrqol ◽  
Patient Reported ◽  
The Impact ◽  
Tumor Laterality

OBJECTIVE Traditionally, the dominant (usually left) cerebral hemisphere is regarded as the more important one, and everyday clinical decisions are influenced by this view. However, reported results on the impact of lesion laterality are inconsistent in the scarce literature on quality of life (QOL) in patients with brain tumors. The authors aimed to study which cerebral hemisphere is the most important to patients with intracranial tumors with respect to health-related QOL (HRQOL). METHODS Two hundred forty-eight patients with unilateral, unifocal gliomas or meningiomas scheduled for primary surgery were included in this prospective cohort study. Generic HRQOL was measured using the EQ-5D-3L questionnaire preoperatively and after 4–6 weeks. Cross-sectional and longitudinal analyses of data were performed. RESULTS Tumor volumes were significantly larger in right-sided tumors at diagnosis, and language or speech problems were more common in left-sided lesions. Otherwise, no differences existed in baseline data. The median EQ-5D-3L index was 0.73 (range −0.24 to 1.00) in patients with right-sided tumors and 0.76 (range −0.48 to 1.00) in patients with left-sided tumors (p = 0.709). Due to the difference in tumor volumes at baseline, histopathology and tumor volumes were matched in 198 patients. EQ-5D-3L index scores in this 1:1 matched analysis were 0.74 (range −0.7 to 1.00) for patients with right-sided and 0.76 (range −0.48 to 1.00) for left-sided lesions (p = 0.342). In the analysis of longitudinal data, no association was found between tumor laterality and postoperative EQ-5D-3L index scores (p = 0.957) or clinically significant change in HRQOL following surgery (p = 0.793). CONCLUSIONS In an overall patient-reported QOL perspective, tumor laterality does not appear to be of significant importance for generic HRQOL in patients with intracranial tumors. This may imply that right-sided cerebral functions are underestimated by clinicians.

scholarly journals Gastrointestinal Symptoms of and Psychosocial Changes in Inflammatory Bowel Disease: A Nursing-Led Cross-Sectional Study of Patients in Clinical Remission

Medicina ◽  
2020 ◽  
Vol 56 (1) ◽  
pp. 45 ◽  
Author(s):  
Rosellina Margherita Mancina ◽  
Raffaele Pagnotta ◽  
Caterina Pagliuso ◽  
Vincenzo Albi ◽  
Daniela Bruno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Gastrointestinal Symptoms ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
The Impact

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients’ quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients’ social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient’s daily life.

Association of Touch Avoidance with Disease Severity and Quality of Life in Psoriasis Patients

2017 ◽  
Vol 2 (3) ◽  
pp. 57-63 ◽  
Author(s):  
April W. Armstrong ◽  
Jennifer C. Cather ◽  
Carle F. Paul ◽  
Emily Edson-Heredia ◽  
Baojin Zhu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Severity ◽  
Linear Models ◽  
Logistic Models ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional ◽  
Patient Reported ◽  
Touch Avoidance ◽  
The Impact

Background and Objective Previous large studies have highlighted the impact of psoriasis on health-related quality of life (HRQoL) but not on interpersonal touch. This survey assessed the prevalence of touch avoidance among psoriasis patients, and its relationship to clinical characteristics and HRQoL. Methods Using an online, cross-sectional study with a standardized questionnaire, psoriasis patients reported their level of touch avoidance. The relationships between touch avoidance, patient-reported outcome measures, and patient demographics were analyzed using linear models for continuous outcomes and logistic models for categorical outcomes. Results Touch avoidance was reported by 48.2% of participants. Higher levels of touch avoidance were associated with worse HRQoL, depression, and itch outcomes (p<.001 for all). The strongest indicators of touch avoidance were HRQoL score (p<.001) and depression score (p<.001). Conclusion Nearly half of psoriasis patients report avoidance of touch. Those who had worse disease severity, HRQoL, and depression reported higher levels of touch avoidance.

scholarly journals Assessment of quality of life among HIV infected people on antiretroviral therapy in a tertiary hospital, Karnataka

2021 ◽  
Author(s):  
Anjan Sreeranga ◽  
P. Pavithra ◽  
Anand D. Meundi
Keyword(s):  
Quality Of Life ◽  
Antiretroviral Therapy ◽  
Rural Areas ◽  
World Health ◽  
Cross Sectional ◽  
Infected People ◽  
Significant Difference ◽  
Patient Reported ◽  
The Impact

Background: With the availability of highly effective antiretroviral treatment, HIV is transforming into a chronic condition, whose management is now experiencing problems of other chronic diseases, where quality of life (QOL) has become an important component of overall assessment of health care and management. This study was conducted with the objective of assessing the QOL and factors influencing it in HIV infected people on antiretroviral therapy (ART).Methods: A cross-sectional study was conducted at district ART center, Hassan. Purposive sampling was used to identify 148 HIV infected people on antiretroviral therapy, who were interviewed using a pretested questionnaire, assessing QOL with the World Health Organization (WHOQOL) HIV‑BREF.Results: The average age of the study population was 37.69 years. Majority of them were males 54.7% compared to 45.3% of females. Most of them resided in rural areas (87.8%). The educational status of the subjects was poor with 33.8% of them being illiterates. The mean score was highest for spirituality and social relationships domain and least for psychological domain. Age, education and socioeconomic status did not have any influence on the QOL. There was significant difference between QOL scores and clinical stages. Individuals in stage I and II had better scores compared to stage 3 and 4. QOL scores decreased with decreasing CD4 count.Conclusions: Our findings suggest that patient-reported measures of health status and related concepts may help provide a feasible, reliable and valid method to assess the impact of HIV/AIDS improve patient outcomes. 

Patient-reported quality of life in multiple sclerosis differs between cultures and countries: a cross-sectional Austrian–German–Polish study

2010 ◽  
Vol 17 (4) ◽  
pp. 478-486 ◽  
Author(s):  
A Pluta-Fuerst ◽  
K Petrovic ◽  
T Berger ◽  
W Fryze ◽  
S Fuchs ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Trials ◽  
Disease Severity ◽  
Multivariate Regression Analysis ◽  
Cross Sectional ◽  
Patient Reported ◽  
Edss Score ◽  
The Impact

Background: Patient-reported quality of life (QOL) is an outcome measure in clinical trials in multiple sclerosis (MS), but translated QOL instruments may affect the actual comparability of data. Objectives: We aimed to investigate possible differences in QOL in MS between cultures and countries. We employed the Functional Assessment of Multiple Sclerosis (FAMS) Version 4 questionnaire, which is a state-of-the-art QOL instrument. Methods: Some 484 MS patients from Austria (145), Germany (144), and Poland (195) aged 20–60 years, and stratified for sex and disease severity as measured by the Expanded Disability Status Scale (EDSS) score completed the respective FAMS translation and a socio-demographic questionnaire. Results: Analysis of variance and post-hoc Scheffé-test showed that 64% of the FAMS items were answered significantly differently ( p < 0.001) between the three countries. A multivariate regression analysis including all the available disease-related and socio-demographic variables revealed the factors age, EDSS score, employment, social contacts, MS course, and country to be significant predictors of both the total FAMS score and the score for items answered differently between the three countries. Conclusions: Differences exist in the QOL of MS patients from Austria, Germany, and Poland which seem to lie beyond the impact of disease severity. They appear to be related to culture or other country-specific factors, as country was an independent predictor of differently answered items of the FAMS and thus also of the whole FAMS. QOL instruments should consider this aspect to faithfully reflect subjective information such as patient-reported benefit of treatment in multinational clinical trials.

scholarly journals Chronic Lymphocytic Leukemia (CLL) Patients Quality of Life (QoL): A Cross-Sectional Analysis of the Italian Experience in the Choice Study during the First Wave of the COVID-19 Pandemic

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4680-4680
Author(s):  
Alessandra Tedeschi ◽  
Idanna Innocenti ◽  
Francesco Albano ◽  
Alessandro Gozzetti ◽  
Luciano Levato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Treated Group ◽  
Concomitant Treatment ◽  
Future Health ◽  
Cross Sectional ◽  
Patient Reported ◽  
C 30 ◽  
Eortc Qlq ◽  
The Impact

Abstract Introduction Although plenty of data exists on efficacy and safety of CLL drugs, their impact on patients' Health-Related Quality of Life (HRQoL) is largely unknown (1-2). Documentation of drug safety via traditional use of adverse events (AE) in hematology is limited if not complemented with Patient-Reported Outcomes (PRO) measures (3-4). Incorporation of HRQoL PROs is now essential to better evaluate risk-benefit of new therapeutic approaches and it is also highly valued by regulatory stakeholders (5). Most PRO data currently available for CLL patients (pts) came from randomized controlled trial settings (6-7), hence limiting generalizability of findings to CLL real-life patients. CHOICE study was designed to investigate CLL patients' QoL and preference towards different treatment profiles through a Discrete Choice Experiment (DCE) methodology in Italy. Due to the timelines of the study, which started in February 2020, the related data offer an insight into patients' perception and worries during the first wave of the COVID-19 pandemic. Methods This cross sectional, multi-center, observational study included CLL patients, treatment naïve during the watch & wait period (W&W) or already TREATED (around 50% each, controlled at site level), who signed the informed consent for study participation. Exclusion criteria were inability to take oral drugs, cognitive disorders that could impair the comprehension of the questionnaires and concomitant treatment for other malignancies. Patients were asked to fill in the following HRQoL questionnaires: EQ-5D-5L, EORTC QLQ-C30 and QLQ CLL-16, as well as a DCE questionnaire, (described elsewhere). Each questionnaire was completed by the patient on a tablet - using an App specifically developed for the study. Results 401 pts were enrolled in Italy in 16 hematology centers (Feb - July 2020); 199 W&W and 196 TREATED pts completed the questionnaires and were included in the evaluable population. Main patients' characteristics are shown in Table 1. 73.7% of TREATED pts were ON-treatment (30.8% were in 1st-line, 69,2% in further lines) and 26.3% were OFF-treatment; the majority of pts (55,6%) were currently treated with a target therapy (Table1). The EQ-5D-5L questionnaire showed no significant differences between groups. In both groups more than 80% of pts reported low values (1 or 2, indicating no or small impact) on all items. Median VAS was 75 for the TREATED group and 80 for the W&W group (0-100; higher scores indicate higher QoL). QLQ C-30 / CLL-16 scores had very similar results between TREATED and W&W pts suggesting a limited impact of CLL on pts QoL. The median (IQR) QoL Scale was 83.3 (67- 83) for TREATED and 83.3 (67- 92) for W&W pts (0-100; all functional scales had high scores, that represent a better level of functioning; all symptoms' scales had low values, representing a less important symptomatology or problem, Figure 1). The main symptoms reported were fatigue, insomnia, pain, and dyspnea, while the main worry was for "future health" (Figure 1). Distribution of data was statistically different between the 2 groups only for the Role functioning Scale (p=0.024) and the Social Functioning Scale (p=0.003) of QLQ-C30 and for the Infection Scale (p&lt;0.001) of QLQ CLL-16, always with slightly but significantly better results for the W&W group. Conclusions CHOICE study helps to understand the CLL patients' mindset and feeling in the light of the COVID-19 pandemic impact on health care for this category of pts, highlighting their preferences and worries in a large cohort of pts in Italy, allowing a comparison between TREATED and W&W pts. The main limitation of the study was its cross-sectional design, which does not allow us to evaluate any change in QoL neither with respect to the impact of the pandemic, nor to the effects of the treatment, if any. CLL pts showed a good QoL, as confirmed by both EQ-5D-5L and EORTC QLQ C-30 / CLL-16 scores, with very similar results between TREATED and W&W pts (although slightly better results in the W&W vs TREATED group). The results of the present study are consistent with previous reports, and fatigue was the most reported symptom, while worry for future health was the most relevant score in CLL-16 questionnaire. Hospital accesses reduction that was detected during the pandemic might have influenced patients' response, as well as the extreme attention towards the danger of infections, and might have impacted patients' perception on future health. Figure 1 Figure 1. Disclosures Tedeschi: Beigene: Honoraria, Speakers Bureau; AstraZeneca: Honoraria, Speakers Bureau; AbbVie: Honoraria, Speakers Bureau; Janssen: Honoraria, Speakers Bureau. Gozzetti: Janssen: Honoraria; AbbVie: Honoraria. Reda: Beigene: Consultancy; Astra Zeneca: Consultancy; Abbvie: Consultancy; Janssen: Consultancy. Gualberti: AbbVie: Current Employment. Malgieri: AbbVie: Current Employment. Finsinger: AbbVie: Current Employment.

Burden of illness of people with persistent symptoms of schizophrenia: A multinational cross-sectional study

2017 ◽  
Vol 63 (2) ◽  
pp. 139-150 ◽  
Author(s):  
Anna-Lena Nordstroem ◽  
Darren Talbot ◽  
Corrado Bernasconi ◽  
Carmen Galani Berardo ◽  
Justine Lalonde
Keyword(s):  
Quality Of Life ◽  
Rating Scales ◽  
Burden Of Illness ◽  
Resource Utilisation ◽  
Cross Sectional ◽  
Carer Burden ◽  
Persistent Symptoms ◽  
Patient Reported ◽  
The Impact

Background: Few studies have examined the impact of persistent symptoms of schizophrenia, especially with respect to patient-reported outcomes (PROs), carer burden and health economic impact. Aims: Analyse data relating to burden and severity of illness, functional impairment and quality of life for patients with persistent symptoms of schizophrenia. Methods: A cohort of stable outpatients with persistent symptoms of schizophrenia across seven countries were assessed in a multicentre, non-interventional, cross-sectional survey and retrospective medical record review using PRO questionnaires, clinical rating scales and carer questionnaires. Results: Overall, 1,421 patients and 687 carers were enrolled. Approximately two-thirds of patients had moderate/mild schizophrenia with more severe negative symptoms predominating. Patients showed impaired personal/social functioning and unsuitability for work correlated with various patient factors, most notably symptom-related assessments. Quality-of-life assessments showed 25% to ⩾30% of patients had problems with mobility, washing or dressing. Carer burden was also considerable, with carers having to devote an average of 20.5 hours per week and notable negative impact on quality-of-life measures. Healthcare resource utilisation for in-hospital, outpatient and other care provider visits was significant. Conclusion: These results demonstrate the significant burden of schizophrenia for patients, carers and society and highlight the need for improved treatment approaches.

The effect of surgery in tenosynovial giant cell tumours as measured by patient-reported outcomes on quality of life and joint function

2019 ◽  
Vol 101-B (3) ◽  
pp. 272-280 ◽  
Author(s):  
F. G. M. Verspoor ◽  
M. J. L. Mastboom ◽  
G. Hannink ◽  
W. T. A. van der Graaf ◽  
M. A. J. van de Sande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Giant Cell ◽  
Diffuse Type ◽  
Joint Function ◽  
Population Means ◽  
Sf 36 ◽  
Patient Reported ◽  
The Impact

Aims The aim of this study was to evaluate health-related quality of life (HRQoL) and joint function in tenosynovial giant cell tumour (TGCT) patients before and after surgical treatment. Patients and Methods This prospective cohort study run in two Dutch referral centres assessed patient-reported outcome measures (PROMs; 36-Item Short-Form Health Survey (SF-36), visual analogue scale (VAS) for pain, and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC)) in 359 consecutive patients with localized- and diffuse-type TGCT of large joints. Patients with recurrent disease (n = 121) and a wait-and-see policy (n = 32) were excluded. Collected data were analyzed at specified time intervals preoperatively (baseline) and/or postoperatively up to five years. Results A total of 206 TGCT patients, 108 localized- and 98 diffuse-type, were analyzed. Median age at diagnosis of localized- and diffuse-type was 41 years (interquartile range (IQR) 29 to 49) and 37 years (IQR 27 to 47), respectively. SF-36 analyses showed statistically significant and clinically relevant deteriorated preoperative and immediate postoperative scores compared with general Dutch population means, depending on subscale and TGCT subtype. After three to six months of follow-up, these scores improved to general population means and continued to be fairly stable over the following years. VAS scores, for both subtypes, showed no statistically significant or clinically relevant differences pre- or postoperatively. In diffuse-type patients, the improvement in median WOMAC score was statistically significant and clinically relevant preoperatively versus six to 24 months postoperatively, and remained up to five years’ follow-up. Conclusion Patients with TGCT report a better HRQoL and joint function after surgery. Pain scores, which vary hugely between patients and in patients over time, did not improve. A disease-specific PROM would help to decipher the impact of TGCT on patients’ daily life and functioning in more detail. Cite this article: Bone Joint J 2019;101-B:272–280.

Patients With a History of Oronasal Fistula Repair Exhibit Lower Oral Health Measured With Patient-Centric Outcomes Measures

2020 ◽  
pp. 105566562098133
Author(s):  
Alyssa Fritz ◽  
Diana S. Jodeh ◽  
Fatima Qamar ◽  
James J. Cray ◽  
S. Alex Rottgers
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Palate ◽  
Fistula Repair ◽  
Old Patients ◽  
Oronasal Fistula ◽  
Patient Reported ◽  
History Of ◽  
The Impact

Introduction: Oronasal fistulae following palatoplasty may affect patients’ quality of life by impacting their ability to eat, speak, and maintain oral hygiene. We aimed to quantify the impact of previous oronasal fistula repair on patients’ quality of life using patient-reported outcome psychometric tools. Methods: A cross-sectional study of 8- to 9-year-old patients with cleft palate and/or lip was completed. Patients who had a cleft team clinic between September 2018 and August 2019 were recruited. Participants were divided into 2 groups (no fistula, prior fistula repair). Differences in the individual CLEFT-Q and Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19) Oral Health scores between the 2 groups were evaluated using a multivariate analysis controlling for Veau classification and syndromic diagnosis. Results: Sixty patients with a history of cleft palate were included. Forty-two (70%) patients had an associated cleft lip. Thirty-two (53.3%) patients had no history of fistula and 28 (46.7%) patients had undergone a fistula repair. CLEFT-Q Dental, Jaw, and Speech Function were all higher in patients without a history of a fistula repair; however, none of these differences were statistically significant. The COHIP-SF 19 Oral Health score demonstrated a significantly lower score in the fistula group, indicating poorer oral health ( P = .05). Conclusions: One would expect that successful repair of a fistula would result in improved function and patient satisfaction, but the consistent trend toward lower CLEFT-Q scores and significantly increased COHIP-SF 19 Oral Health scores in our study group suggests that residual effects linger and that the morbidity of a fistula may not be completely treated with a secondary correction.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

scholarly journals Quality of life and perceived health status in surviving adults with univentricular heart

Heart ◽  
2001 ◽  
Vol 86 (1) ◽  
pp. 69-73
Author(s):  
Z Saliba ◽  
G Butera ◽  
D Bonnet ◽  
P Bonhoeffer ◽  
E Villain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Normal Population ◽  
Psychosocial Problems ◽  
Perceived Health ◽  
Univentricular Heart ◽  
Cross Sectional ◽  
Clinical Variables ◽  
Health Measures ◽  
The Impact

OBJECTIVETo evaluate the quality of life in patients with univentricular heart and to determine the impact of sociodemographic and clinical characteristics.DESIGN AND SETTINGRetrospective, cross sectional study conducted in a regional paediatric cardiology centre.PATIENTSThe health records of 89 survivors with univentricular heart (median age 21 years; range 17–49 years) were reviewed. Sixty seven answered the Duke questionnaire. Sociodemographic and clinical variables were similar in the responders and non-responders. The impact of sociodemographic and clinical variables on individual Duke's measures was assessed.RESULTSThe Duke scores of adults with univentricular heart were similar to the normal population. Cyanosis predicted a worse score for physical (p = 0.05) and perceived health measures (p = 0.02). A higher educational level predicted a better score for physical (p = 0.004), mental (p = 0.01), and general health measures (p = 0.02). Orthopaedic problems worsened the social score (p = 0.05). Psychosocial problems worsened the pain score (p = 0.04). In comparison with the other anatomical types, mitral atresia worsened the perceived health score (p = 0.02). Patients younger than 23 years scored better for almost all health and dysfunction measures.CONCLUSIONSDespite repeated interventions and other disease related everyday stresses, a selected group of adults with univentricular heart had a satisfying quality of life.

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