What is the perceived quality of life of adults with congenital heart disease and does it differ by anomaly?

Adults with congenital heart disease (CHD) represent a growing population of patients thanks to the medical and surgical advances which enable at least 85% of children to survive to adulthood. These advances may create quality-of-life (QoL) issues not previously considered. The purpose of this cross-sectional study of 124 adults with CHD was to describe their QoL as a basis for providing appropriate information, counseling, and anticipatory guidance. Thirteen patients had single ventricle physiology (SVP), 43 had cyanotic lesions with 2 ventricle repairs, and 68 had acyanotic CHD. On the basis of Sickness Impact Profile (SIP) scores, individuals with SVP had worse QoL than did those with cyanotic lesions (with 2 ventricle repairs) and acyanotic anomalies (SIP = 9.98 vs 4.61 and 3.76). SIP scores were statistically significantly different between those with SVP and those with acyanotic anomalies (P = .02). For all groups, the areas of life most affected were work and sleep and rest. Participants with SVP saw themselves as having the poorest QoL.     

Preoperative expectations and postoperative quality of life in liver transplant survivors

OBJECTIVE: To assess normalization in the lives of liver transplant patients and the impact of preoperative expectations on postoperative quality of life (QOL). DESIGN: A semistructured interview, 2 QOL questionnaires, and chart reviews of medical histories. SETTING: Internal medicine department at Innsbruck university hospital, Austria. PARTICIPANTS: Fifty-five patients (32 men, 23 women) with liver transplants. INTERVENTIONS: The Sickness Impact Profile (SIP) and Functional Assessment of Cancer Therapy-General. RESULTS: Patients' preoperative expectations of a normal life style posttransplantation were predominantly optimistic (60%), but postoperatively only 40% thought that their expectations had been realized. The patients' SIP values showed significant impairments in nearly every area of life when compared with the values of a healthy control group. Only "complications during the hospitalized phase" had a statistically significant impact among the sociodemographic and clinical parameters on postoperative QOL. The lowest QOL scores were found among patients whose expectations of a return to normal life style had not been realized. CONCLUSION: Unmet life-style expectations after liver transplantation may lead to increased stress, which affects QOL long term. This finding is of clinical relevance; therapeutic measures, particularly professional pretransplant counseling, are indicated.     

The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

Background Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.     

Dimensions of quality of life for Chinese adults with spinal cord injury: a qualitative study

Purpose: The purpose of this study was to explore meaning and components of quality of life (QOL) perceived by Chinese adults with a spinal cord injury (SCI) and to examine the frame of reference that this population used to assess quality of their life.

Method: A qualitative research approach was used. Six focus group interviews were conducted with 40 adults with SCI from a northeastern city in China. A content analysis was conducted on interview data to determine meaning and components of QOL perceived by the participants.

Results: Participants defined QOL as satisfaction with one's life, which might vary from person to person and change when the circumstance changed. They identified 18 QOL components that could be grouped into five domains: physical, psychological, economic, social well-being, and a least restrictive environment. When assessing quality of their life, participants used both internal (comparing with oneself) and external (comparing with others) comparisons.

Conclusions: The results of this study contribute to the understanding of dimensions of QOL for people with SCI in China. Although several domains of QOL identified in the present study were similar to those found in previous studies conducted elsewhere, several unique components of QOL, such as relationship with extended family and neighbours, government support, peace in the world and the nation, were identified by the participants. These components appeared to be related to the Chinese culture and socioeconomic system. Specific QOL measurements that address these unique components are needed when assessing QOL of this population.     

Quality of life in diabetes

Different clinical features of diabetic patients and type of complications are certainly a critical components of the global individual perception of quality of life (qol); but also personal socio-cultural characteristics interfere concurrently. Qol in diabetes was assessed considering disease grade, complications and level of instruction in a population of 100 diabetic patients (30 m, 70 f), aged 66.99 +/- 13.68 years. Two questionnaires were administered to all patients; Sickness Impact Profile (SIP) and Functional Living Index (FLI). SIP is an index of psycho-social, physical and motor functionality; FLI derives from a scale devised for cancer patients and adapted to diabetic patients. Both were analysed by Spearman correlation test, and assayed vs. sociocultural profile and clinical symptoms. Neuro-muscular ailments were more prevalent in women; men experience severe limitations of working capacities an relational possibilities, with severe discomfort. In the whole, higher scores of SIP (greater disability p: ns) and lower score for FLI (scant well-being perception r = 0.29: p<0.01) are related with lower school instruction level. Global QOL score is related as well with degree of instruction (r = 0.22: p<0.03). So QOL is altered during chronic diseases: however, in diabetes, qol impairment does not seem related with severity, treatment features and complications of diabetes. Socio-cultural elements, and particularly instruction level quantified as school grades achieved, interfere with the manner of living diabetic disease.     

社区老年冠心病患者的生活质量及其影响因素

目的评估社区老年冠心病患者的生活质量(quality of life,QOL),分析影响其QOL的相关因素。方法采用问卷对山西省太原市某社区90例老年冠心病患者和90例健康老年人进行调查,该问卷由健康调查问卷、西雅图心绞痛问卷、社会支持量表和人口社会学资料组成。结果社区老年冠心病患者的健康简表评分在8个维度比健康老年人群低(P<0.05),其中生理职能维度下降最明显;影响QOL的因素有生理功能的改变、心理精神因素和社会支持。结论老年冠心病患者的生活质量明显低于健康老年人群,造成社区老年冠心病患者QOL下降的主要因素是生理功能改变导致的日常生活受限,人口社会学因素对QOL的改变也有一定程度的影响。     

Quality of life in survivors of prolonged mechanical ventilatory support

OBJECTIVE: To examine the long-term quality of life (QOL) in a group of patients after prolonged mechanical ventilatory support. DESIGN: Prospective cohort study. SETTING: Outpatient follow-up. PATIENTS: Survivors of prolonged mechanical ventilatory support who were discharged from a ventilator rehabilitation unit (VRU). INTERVENTIONS: Measurement of health-related QOL using the Sickness Impact Profile (SIP). MEASUREMENTS AND MAIN RESULTS: Forty-six patients were contacted approximately 2 yrs after their discharge from the VRU and asked to complete the SIP. Twenty-five patients (age, 59 +/- 17 yrs; duration of mechanical ventilatory support, 45 +/- 36 days [mean +/- sd]) agreed to participate in this study and completed the SIP questionnaire 23 +/- 18 months after their discharge from the VRU. Patients' VRU stay was 29 +/- 21 days. Two patients were discharged with nocturnal ventilatory support, and the rest were completely weaned of mechanical ventilatory support before discharge. Fifteen patients (60%) were discharged to home, eight patients (32%) were discharged to a rehabilitation facility, and two patients (8%) were discharged to a skilled-care facility. Most patients had mild dysfunction, and the global SIP score was 12 +/- 10, the physical dimension score was 12 +/- 12, and the psychosocial dimension score was 9 +/- 11 (SIP scores range from 0 to 100, with higher scores indicating worse QOL). Subgroup analysis showed that postoperative patients had lower SIP scores compared with patients with chronic respiratory diseases (global SIP, 7 +/- 6 vs. 19 +/- 8; p <.05). Moreover, the patients in the postoperative group were older, but had similar SIP scores as patients who had acute lung injury (17 +/- 15). Global SIP scores correlated with age (r = -.40; p =.046), but not with duration of mechanical ventilatory support (r = -.23) or VRU admission Acute Physiology and Chronic Health Evaluation II scores (r = -.39; p =.06). CONCLUSIONS: In survivors of prolonged mechanical ventilatory support, using specific selection criteria shows that there is minimal impairment in the QOL at long-term follow-up. Although some patients continue to have moderate to severe limitations, it is the cause of respiratory failure and the underlying disease, rather than duration of ventilatory support, that have a significant impact on QOL.     

Severely mobility-disabled people assess the quality of their lives

Thirty-six severely mobility-disabled subjects aged 24-52 years using a wheelchair and in need of daily assistance and 36 non-handicapped, matched control-subjects were interviewed. They were asked to rank 30 different abilities involving physical and mental functions, interpersonal and social relationships, and to rate their overall quality of life (QOL) on a 0-10 point scale. Among the severely mobility-disabled subjects the mean value of self-reported QOL was 8.0, which differs only slightly from 8.3 among the controls. The mean QOL among the disabled showed no significant difference regarding congenital/acquired and progressive/permanent disability. The 'abilities' ranked 1-9 were not directly related to mobility and corresponded among the disabled and non-handicapped. The functions lacked by the severely mobility-disabled persons were rated as less important by the disabled. The undiminished QOL is probably a result of personal adjustment, compensation by medical rehabilitation and society, as well as positive features of the disability.     

北京50岁及以上男性夜尿患病率调查

目的调查北京地区50岁及以上男性夜尿患病现状及其与年龄、下尿路症状及膀胱过度活动症(OAB)的相关性。方法采用分层多阶段整群不等比例随机抽样方法选择年龄≥50岁男性作为研究对象。下尿路症状的评估包括国际前列腺症状评分(IPSS)、生活质量(QOL)评分、腹部超声前列腺体积、残余尿量测定和最大尿流率测定。夜尿定义为夜间睡眠过程中≥2次排尿。结果本研究共调查社区中老年男性人群1656人,符合本研究要求的共计1639人。年龄50～89岁,平均(64±10)岁。夜尿的患病率为66.4%(1089/1639)。夜尿的患病率与社区中老年男性的年龄、IPSS评分、QOL评分、残余尿量以及最大尿流率均具有显著相关性(P<0.01)。对年龄以及IPSS评分的分层研究发现,夜尿的患病率随着年龄的增加以及下尿路症状的加重明显升高(P<0.01)。夜尿人群中OAB患病率显著高于非夜尿人群。结论社区中老年男性夜尿的患病率很高,严重影响中老年患者生活质量,是一种常见但未被充分认识的疾病。中老年男性夜尿患病率随年龄增长逐渐增加。     

Return to work and quality of life in severely injured patients

Background. Little is known about the long-term consequences of severe injuries in terms of return to productivity and quality of life.

Methods. In this study we focused on the return to work status and quality of life in 53 severely injured patients (AIS/ISS ≥ 16, mean ISS 24, range 16 – 54), mean age 37 years, one to two years after the injury. Questions were asked concerning employment in the past and at present. Quality of life was measured by means of the Sickness Impact Profile (SIP) questionnaire. Injury-related parameters were analysed in order to study their relation with disablement.

Results. Of those patients who survived their injuries, 87% had resumed their former work. Only 10% of the patients received disability benefits. A mean SIP-total score of 6.7 was found, the mean SIP-physical score was 5.9 and the mean SIP-psychosocial score was 6.9. “No disability” (SIP score ≤ 3) was found in 55% of the patients, whereas 11% of the patients reported “severe disability” (SIP score ≥ 20). Age was a significant predictor of disablement (odds ratio 1.07). The Injury Severity Score (ISS), the length of hospital stay and the number of diagnoses did not predict disablement.

Conclusions. Although the results were obtained in a relatively small sample size, the return to work rate in the surviving severely injured patients appears to be excellent. The quality of life is good; the majority of patients are not disabled. Age (and not the ISS) seems to be a significant predictor of disablement.     

Health-related quality of life in patients with obstructive sleep apnoea and chronic obstructive pulmonary disease (overlap syndrome)

The association of obstructive sleep apnoea (OSA) and chronic obstructive pulmonary disease (COPD) is not rare as COPD and OSA are both frequent diseases. The aim of this study was to determine the effect of OSA on quality of life (QOL) in patients with overlap syndrome (OVS). Thirty subjects with OVS and 15 control subjects participated. The St George's Respiratory Questionnaire (SGRQ) was used to determine QOL. The control group included subjects with COPD and no evidence of OSA by overnight polysomnography. All subjects were habitual snorers with normal Epworth Sleepiness Scale scores. Significant differences were found between the groups for the total score and each of the three components of the SGRQ suggesting worse QOL in OVS patients (symptoms 54.9 +/- 18.9 vs. 38.2 +/- 19.3, p = 0.008; activity 59.2 +/- 16.2 vs. 44.4 +/- 11.3, p = 0.003; impacts 35.2 +/- 23 vs. 20.8 +/- 8.7, p = 0.025 and total 45.7 +/- 17.7 vs. 30.9 +/- 8.7, p = 0.004 in OVS patients and control group, respectively). Obstructive sleep apnoea has a major impact on QOL in patients with OVS and can exist in COPD patients with habitual snoring even in the absence of daytime sleepiness. Further studies are needed to determine the impact of OSA treatment on QOL and morbidity in this population.     

Quality of life of adults with spinal cord injury: a study using the WHOQOL-bref

The objective of this study was to evaluate the quality of life (QOL) of adults with spinal cord injury and to identify the domains that may influence QOL. Data was collected using the WHOQOL-bref and a questionnaire with sociodemographic variables. Participants were 47 subjects, with a mean age of 42.95 years, 91.5% males and 8.5% females. The domains obtained the following scores: physical (58.59), psychological (63.82), social (68.79), and environmental (55.20). Through multiple linear regression, it was verified the correlation between domain scores and the perception of QOL: physical (p <0.187), psychological (p <0.399), social (p <0.000), and environmental (p <0.008). In conclusion, most participants (55.3%) are unsatisfied with their QOL, and the social and environmental domains showed a higher correlation with QOL.     

Electronic aids to daily living and quality of life for persons with tetraplegia

Purpose.?To compare the satisfaction with quality of life (QOL) of adults with tetraplegia from spinal cord injury (SCI) who use and do not use electronic aids to daily living (EADLs).

Method.?This study used a cross-sectional design. Thirty-six persons with spinal cord injuries or conditions at or above C5/6 level participated. Fifteen participants used EADL at home and 21 formed the comparison group of non-users of EADL; all were living in the community. We used the Quality of Life Profile-Physical Disabilities (QOLP-PD) to examine participant's QOL.

Results.?Both groups rated the levels of importance of all aspects of QOL equally. The EADL users rated their satisfaction with QOL significantly higher for total QOLP-PD scores and for four of the nine domains, including all three domains of belonging. The groups did not differ in age, FIM scores, level of education, and hours of paid attendant care. The EADL user group had significantly more males than females, and had higher levels of SCI.

Conclusions.?EADLs appear to contribute to the experience of greater subjective QOL for persons with severe physical disability from high SCI. Prospective cohort studies designs that employ methods and analytic plans to study the causal effect of EADLs on QOL are recommended. The QOLP-PD was found to be a valid measure of QOL for this population.     

A Structural Equation Model of Quality of Life in Adults with Type 2 Diabetes in Korea

PurposeThe purpose of this study was to test a structural equation model in which self-efficacy and self-care activity predicts the quality of life (QOL) of individuals with type 2 diabetes in Korea.MethodA survey about self-care activity, self-efficacy, glucose control, and QOL was completed by 132 diabetic patients from public health centers in Korea. Data were analyzed using SPSSWIN 18.0 and AMOS 19.0.ResultsThe mean age of the participants was 63.2 years. The proposed model was a good fit for the data based on the model fit indices. Self-efficacy had a significant effect on self-care activity (95%), and this model explained 25% of the variance in QOL.ConclusionsThe findings indicate that self-efficacy and self-care activity play important roles in explaining QOL in adults with type 2 diabetes. Nursing strategies to increase QOL in this population should contain self-efficacy enhancement to promote the performance of self-care activity.     

Impact of headache on quality of life in a general population survey in France (GRIM2000 Study)

OBJECTIVES: The objectives of this study were to determine the impact of headache on health-related quality of life in a nationwide sample of the French general population using a disease-specific measure, the Qualité de Vie et Migraine (QVM), to compare quality of life in subjects reporting different headache to types, and to evaluate the relationship between quality of life and severity, frequency, associated disability, and treatment responsiveness of headaches. METHODS: The QVM questionnaire was included within a large epidemiological survey of 1486 headache sufferers. Diagnosis was assigned retrospectively using an algorithm based on the International Headache Society classification. Headache severity was assessed with the MIGSEV scale and disability with the MIDAS scale. RESULTS: The mean global QVM score in the sample was 80.2. Quality of life was poorer in subjects with chronic daily headache (QVM score: 66.2) than in those with migraine (QVM score: 76.7), while those with other forms of episodic headache had the best quality of life (QVM score: 91.7). Quality-of-life scores were correlated with frequency, severity, disability, and treatment resistance of headaches (P <.001). CONCLUSION: The QVM scale is a sensitive tool to measure health-related quality of life in headache sufferers in the general population.     

Investigating the Domains of Life Satisfaction in Middle-Aged,Late Middle-Aged,and Older Adults with a Physical Disability

Little research exists that explores which domains of life satisfaction contributed to life satisfaction among Korean older adults with a physical disability. The purpose of this study was to investigate which domains of life satisfaction predicted life satisfaction by the identified different age groups among Korean older adults with a physical disability. This study analyzed the Panel Survey of Employment for the Disabled (PSED) collected in 2015 in Korea. A total of 2331 participants were used and examined their socio-demographic status, the satisfaction of life domains (social, health, finance, leisure, work and marital), and the overall life satisfaction. The results show that marital and employment statuses play an important role in promoting the overall life satisfaction for adults and older adults with a physical disability. In addition, this study suggests that the social and leisure satisfaction of an individual are the major contribution to life satisfaction among older adults (aged 55 and over) who have a physical disability.     

The effect of technology assisted therapy for intellectually and visually impaired adults suffering from separation anxiety: Conquering the fear

Persons with an intellectual disability (ID) are at risk of developing separation anxiety (SA) and, if left untreated, this can be a risk factor for the development of psychopathology. The effects of an intervention, namely technology assisted therapy for SA (TTSA), were examined on the SA, challenging behavior, psychosocial functioning, and quality of life (QOL) experienced by moderate to mild intellectually and visually disabled adults. This study aimed to determine whether TTSA reduces SA and challenging behavior in persons with ID and visual impairment, and if this results in increased psychosocial functioning and QOL. A pre-experimental within-group design with randomized multiple baselines and staggered intervention start-points was used (n = 6). The variables were monitored with standardized instruments. The frequencies of each participant’s use of the technology and the frequency and intensity of their behavior were recorded over time. Results indicate that the SA and challenging behavior experienced by the participants decreased significantly and their psychosocial functioning and QOL increased significantly. The conclusions are that TTSA has the potential to be a valid intervention to address SA in adults with visual and moderate to mild IDs.     

Assessment of former ICU patients' quality of life: comparison of different quality-of-life measures

OBJECTIVE: To compare three different measures to assess quality of life (QOL) after an Intensive Care Unit (ICU) stay: a standardized telephone interview, a satisfaction scale, and the Sickness Impact Profile (SIP). DESIGN: Prospective study, evaluating QOL 6 months after ICU discharge. SETTING: Medical ICU of a Swiss tertiary-care university hospital. PATIENTS AND METHODS: Patients admitted to the ICU between July and November 1998 for more than 24 h were included. Six months after ICU discharge overall QOL and health-related QOL were evaluated. Of the 118 patients approached, 85 returned valid questionnaires. RESULTS: The majority of patients indicated good QOL 6 months after ICU stay on each measure. A correlation for both overall and health-related QOL was found between the SIP and the satisfaction scales, between SIP and the telephone interviews, between the telephone interviews and satisfaction scales. The correlation between rating by scale or telephone interview and SIP in patients with cardiovascular disease differed from patients with other diagnoses. CONCLUSIONS: For the global assessment of overall or health-related QOL after ICU stay, long questionnaires such as SIP may be replaced by a short, structured telephone interview or, better, by a satisfaction scale. Quantitative measures such as SIP may be needed for comparison of therapeutic interventions or specific functional or psychosocial aspects.